Alzheimer's Association 2024 Alzheimer's Disease Facts and Figures

2024

ALZHEIMER’S DISEASE

FACTS AND FIGURES

SPECIAL REPORT

MAPPING A BETTER

FUTURE FOR DEMENTIA

CARE NAVIGATION

Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

About this report

2024 Alzheimer’s Disease Facts and Figures is a statistical

resource for U.S. data related to Alzheimer’s disease, the

most common cause of dementia. Background and context

for interpretation of the data are contained in the Overview.

Additional sections address prevalence, mortality and

morbidity, caregiving, the dementia care workforce, and

the use and costs of health care and services. The Special

Report provides a comprehensive look into dementia care

navigation, revealing signiﬁcant insights into the experiences

and challenges faced by caregivers and health care

workers in helping people living with Alzheimer’s or other

dementia navigate the health care system.

The statistics, facts, ﬁgures, interpretations and statements made in this report

are based on currently available data and information as cited in this report, all of

which are subject to revision as new data and information become available.

12024 Alzheimer’s Disease Facts and Figures

Speciﬁc information in this year’s

Alzheimer’s Disease Facts and Figures includes:

Brain changes that occur with Alzheimer’s disease (page 8).

Risk factors for Alzheimer’s dementia (page 15).

Number of Americans with Alzheimer’s dementia nationally (page 22) and for each state (page 26).

Lifetime risk for developing Alzheimer’s dementia (page 28).

Proportion of women and men with Alzheimer’s and other dementias (page 28).

Number of deaths due to Alzheimer’s disease nationally (page 35) and for each state (page 38),

and death rates by age (page 40).

Number of family caregivers, hours of care provided, and economic value of unpaid care nationally

(page 43) and for each state (page 47).

The impact of caregiving on caregivers (page 48).

The impact of COVID-19 on dementia caregiving (page 55).

Members of the paid workforce involved in diagnosing, treating and caring for people with

Alzheimer’s or other dementias (page 59).

Expected home health and personal care aide job growth, 2020-2030 (page 63).

National cost of care for individuals with Alzheimer’s or other dementias, including costs paid by

Medicare and Medicaid and costs paid out of pocket (page 71).

Medicare payments for people with dementia compared with people without dementia (page 72).

Care navigator services that would be valuable to dementia caregivers (page 105).

The Appendices detail sources and methods used to derive statistics in this report.

When possible, specific information about Alzheimer’s disease is provided; in other cases, the reference may be

a more general one of “Alzheimer’s or other dementias.” This report keeps the racial and ethnic terms and other

population identifiers used in source documents when describing study findings.

2 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Contents

Prevalence

Prevalence of Alzheimer’s

and Other Dementias in

the United States 22

Underdiagnosis of

Alzheimer

’

s and Other

Dementias in the

Primary Care Setting 23

Prevalence of Subjective

Cognitive Decline 23

Prevalence Estimates

Estimates of the

Number of People with

Alzheimer’s Dementia by

State and County

Incidence of

Alzheimer’s Dementia

Lifetime Risk of

Alzheimer’s Dementia

Differences Between Women

and Men in the Prevalence

and Risk of Alzheimer’s and

Other Dementias

Racial and Ethnic Differences

in the Prevalence and Risk

of Alzheimer’s and Other

Dementias

Risk for Alzheimer’s

and Other Dementias in

Sexual and Gender

Minority Groups

Trends in the Prevalence

and Incidence of Alzheimer’s

Dementia Over Time

Looking to the Future

Overview

Alzheimer’s Disease

or Dementia? 5

Brain Changes of

Alzheimer’s Disease 8

Alzheimer’s Disease

Continuum 10

Mixed Dementia 12

When Dementia-Like

Symptoms Are Not

Dementia 12

Treatments 12

Actions to Proactively

Manage Dementia 14

Risk Factors for

Alzheimer’s Dementia 15

Looking to the Future 20

Caregiving

Unpaid Caregivers 43

Caregiving and Women 44

Race, Ethnicity and

Dementia Caregiving 45

Caregiving Tasks 45

Duration of Caregiving 46

Hours of Unpaid Care

and Economic Value of

Caregiving 48

Health and Economic

Impacts of Alzheimer’s

Caregiving 48

Interventions Designed

to Assist Caregivers 53

COVID-19 and Dementia

Caregiving 55

Trends in Dementia

Caregiving 56

A National Strategy

to Support Family

Caregivers 57

Mortality and Morbidity

Deaths from

Alzheimer’s Disease 35

The Effect of the COVID-19

Pandemic on Deaths from

Alzheimer’s Disease 36

Public Health Impact of

Deaths from Alzheimer’s

Disease 39

State-by-State Deaths

from Alzheimer’s 39

Alzheimer’s Death Rates 39

Duration of Illness from

Diagnosis to Death and Time

Spent in Nursing Home 40

The Burden of

Alzheimer’s Disease 40

Looking to the Future 41

3Contents

Use and Costs of

Health Care, Long-Term

Care and Hospice

Total Cost of Health Care

and Long-Term Care 71

Use and Costs of

Health Care Services 73

Use and Costs of

Long-Term Care Services 76

Medicare Does Not

Cover Long-Term Care

in a Nursing Home 81

Use and Costs of

Health Care and

Long-Term Care Services

by Race and Ethnicity 87

The COVID-19 Pandemic

and Health Care

Utilization and Costs 88

Use of Potentially Avoidable

Health Care Services 89

Looking to the Future 90

Caregiver Burden and

Stress Are Compounded

by the Complexity of

Dementia Care 94

Nationwide Movement

to Improve Care While

Reducing Strain on

Caregivers 94

What is GUIDE? 94

Navigators as Dementia

Care Wayfinders 95

Prioritizing Person-

Centered Care in Dementia

Care Navigation 96

Awareness and

Understanding of

Dementia Care Navigation:

Caregiver and Health Care

Workforce Surveys 96

Key Findings 96

Survey Design and

Research Methods 98

Dementia Care

Survey Results 99

Cultural Competency is

Fundamental for Dementia

Care Navigation 102

Non-Physician

Health Care Workforce

Survey Results 104

A Path Forward:

Revolutionizing Dementia

Care With Person-

Centered Navigation 111

Conclusion 114

Workforce

Screening and

Diagnosing Workforce 59

Medical Treatment and

Care Team Workforce 62

Collaborative Workforce

Models for Dementia

Care Management 64

Direct Care Workforce 64

Impact of COVID-19

on the Workforce 66

Dementia-Friendly

Initiatives and the

Community-Based

Workforce 67

Looking to the Future 67

Appendices

End Notes 115

References 118

Special Report – Mapping

a Better Future for

Dementia Care Navigation

Overview

Alzheimer’s begins 20 years

or more before memory loss

and other symptoms develop.

5Overview

Alzheimer’s disease is a type of brain disease, just as

coronary artery disease is a type of heart disease. It is

caused by damage to nerve cells (neurons) in the brain.

The brain’s neurons are essential to all human activity,

including thinking, talking and walking.

Individuals with mild symptoms often may continue to

work, drive and participate in their favorite activities,

with occasional help from family members and friends.

However, Alzheimer’s disease is a progressive disease,

meaning it gets worse with time. How quickly it

progresses and what abilities are affected vary from

person to person. As time passes, more neurons are

damaged and more areas of the brain are affected.

Increased help from family members, friends and

professional caregivers is needed to carry out everyday

activities. Eventually, people may need help with activities

of daily living. These are activities a person typically

performs without assistance, including getting into and

out of a bed or chair, bathing, dressing, using the toilet,

eating and grooming.

Individuals living with Alzheimer’s dementia may develop

changes in mood, personality or behavior. One behavior

of special concern is wandering. For the person with

dementia, wandering is likely an intentional effort to

reach a destination. However, they may not be able to

retrace their steps and may become lost. Wandering puts

individuals at risk of significant injury and death.

Alzheimer’s Disease or Dementia?

Many people wonder what the difference is

between Alzheimer’s disease and dementia.

Dementia is an overall term for a particular

group of symptoms. The characteristic

symptoms of dementia are difficulties with

memory, language, problem-solving and

other thinking skills that affect a person’s

ability to perform everyday activities.

Changes to the brain cause dementia, and

many different brain changes can lead to

dementia (see Table 1, page 6).

Alzheimer’s disease is one cause of dementia.

The brain changes of Alzheimer’s disease

include the excessive accumulation of the

protein fragment beta-amyloid and an

abnormal form of the protein tau, as well as

damage to and destruction of neurons. The

brain changes of Alzheimer’s disease are

the most common contributor to dementia.

Dementia caused by Alzheimer’s disease is

called Alzheimer’s dementia.

In Alzheimer’s disease, the neurons

damaged ﬁrst are those in parts of the

brain responsible for memory, language

and thinking, which is why the ﬁrst symptoms

tend to be memory, language and thinking

problems. Although these symptoms are

new to the individual aﬀected, the brain

changes that cause them are thought to

begin 20 years or more before symptoms

start.

1-8

When symptoms become severe

enough to interfere with a person’s ability

to perform everyday tasks, a person is said

to have Alzheimer’s dementia.

Eventually, the neuronal damage of Alzheimer’s extends

to parts of the brain that enable basic bodily functions

such as walking and swallowing. Because of mobility

limitations, individuals may spend most of their time in a

wheelchair or on a bed. This loss of mobility, along with

cognitive limitations, means they often require around-

the-clock care. Ultimately, Alzheimer’s disease is fatal,

although many people die of other conditions before

Alzheimer’s becomes fatal. Studies indicate that people

age 65 and older survive an average of four to eight years

after a diagnosis of Alzheimer’s dementia, yet some live as

long as 20 years.

10-18

Many factors influence how long

6 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Alzheimer’s disease

Accumulation of the protein beta-amyloid outside neurons and twisted strands of the

protein tau inside neurons are hallmarks. They are accompanied by the death of neurons

and damage to brain tissue. Inflammation and atrophy of brain tissue are other changes.

Cerebrovascular disease

Blood vessels in the brain are damaged and/or brain tissue is injured from not

receiving enough blood, oxygen or nutrients. People with these changes who

develop dementia symptoms are said to have vascular dementia.

Frontotemporal

degeneration (FTD)

Nerve cells in the front and temporal (side) lobes of the brain die and the lobes shrink.

Upper layers of the cortex soften. Abnormal amounts or forms of tau or transactive

response DNA-binding protein (TDP-43) are present.

Cause Brain changes

*This table describes the most common causes of dementia. Emerging causes such as limbic-predominant age-related TDP-43 encephalopathy

(LATE) are under active investigation.

Hippocampal sclerosis (HS)

HS is the shrinkage and hardening of tissue in the hippocampus of the brain.

The hippocampus plays a key role in forming memories. HS brain changes are often

accompanied by accumulation of the misfolded protein TDP-43.

Lewy body disease

Lewy bodies are abnormal aggregations (or clumps) of the protein alpha-synuclein

in neurons. When they develop in a part of the brain called the cortex, dementia

can result. This is called dementia with Lewy bodies or DLB.

Mixed pathologies

When an individual shows the brain changes of more than one cause of dementia,

“mixed pathologies” are considered the cause. When these pathologies result in

dementia symptoms during life, the person is said to have mixed dementia or

mixed etiology dementia.

Parkinson’s disease (PD)

Clumps of the protein alpha-synuclein appear in an area deep in the brain called the

substantia nigra. These clumps are thought to cause degeneration of the nerve cells

that produce the chemical dopamine.

As PD progresses, alpha-synuclein can also

accumulate in the cortex.

Common Causes of Dementia*

Table

7Overview

Alzheimer’s is the most common cause of dementia,

accounting for an estimated 60% to 80% of cases. Most

individuals also have the brain changes of one or more other

causes of dementia.

21,22

This is called mixed pathologies,

and if recognized during life is called mixed dementia.

Difficulty remembering recent conversations, names or events;

apathy; and depression are often early symptoms. Communication

problems, confusion, poor judgment and behavioral changes may

occur next. Difficulty walking, speaking and swallowing are common

in the late stages of the disease.

About 5% to 10% of individuals with dementia show evidence

of vascular dementia alone.

21,22

However, it is more common

as a mixed pathology, with most people living with dementia

showing the brain changes of cerebrovascular disease and

Alzheimer’s disease.

21,22

Slowed thoughts or impaired ability to make decisions, plan

or organize may be the initial symptoms, but memory may also

be affected. People with vascular dementia may become less

emotional and have difficulty with motor function, especially

slow gait and poor balance.

About 60% of people with FTD are ages 45 to 60.

In a

systematic review, FTD accounted for about 3% of dementia

cases in studies that included people 65 and older and about

10% of dementia cases in studies restricted to those younger

than 65.

Typical early symptoms include marked changes in personality

and behavior and/or difficulty with producing or comprehending

language. Unlike Alzheimer’s, memory is typically spared in the

early stages of disease.

HS is present in about 3% to 13% of people with dementia.

It often occurs with the brain changes of other causes of

dementia. An estimated 0.4% to 2% of dementia cases are

due to HS alone.

The most pronounced symptom of HS is memory loss, and

individuals are often misdiagnosed as having Alzheimer’s disease.

HS is a common cause of dementia in individuals age 85 or older.

About 5% of older individuals with dementia show evidence

of DLB alone, but most people with DLB also have the brain

changes of Alzheimer’s disease.

Early symptoms include sleep disturbances, well-formed visual

hallucinations and visuospatial impairment. These symptoms

may change dramatically throughout the day or from day to day.

Problems with motor function (similar to Parkinson’s disease) are

common. Memory loss may occur at some point in the disease.

More than 50% of people diagnosed with Alzheimer’s

dementia who were studied at Alzheimer’s Disease Research

Centers had mixed dementia.

In community-based studies,

the percentage is considerably higher.

Mixed dementia is

most common in people age 85 or older.

27,28

Symptoms vary depending on the combination of brain

changes present.

A systematic review found that 3.6% of dementia cases were due

to PD and 24.5% of people with PD developed dementia.

Problems with movement (slowness, rigidity, tremor and changes

in gait) are common symptoms of PD. Cognitive symptoms may

develop later in the disease, typically years after movement symptoms.

Percentage of dementia cases Symptoms

8 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

individuals live after receiving a diagnosis. They include

age at diagnosis, how far the disease has progressed at

diagnosis, whether the individual has other health

conditions such as diabetes or kidney disease that may

limit remaining lifespan and complicate care and

treatment, and whether the individual has mixed dementia

— the brain changes of not only Alzheimer’s disease but

also another type of dementia.

There is no proven way to prevent Alzheimer’s disease,

and there is currently no cure. However, because of the

large number of people living with Alzheimer’s and other

dementias worldwide (more than 55 million)

and the

devastating effect of dementia on individuals, families,

communities and health care systems, finding ways to

prevent, slow, better manage and cure Alzheimer’s and

other dementias is a top priority for research centers

around the globe.

Brain Changes of Alzheimer’s Disease

A healthy adult brain has billions of neurons, each

with long, branching extensions. These extensions

enable individual neurons to form connections with

other neurons. At such connections, called synapses,

information flows in tiny bursts of chemicals that are

released by one neuron and taken up by another

neuron. The brain contains trillions of synapses.

They allow signals to travel rapidly through the brain.

These signals are the basis of memories, thoughts,

sensations, emotions, movements and skills.

Over the years, researchers have identified many

changes in the brain that may interfere with chemical

signaling and lead to problems with thinking, learning

and everyday function that arise as a result of

Alzheimer’s disease. The accumulation of the protein

fragment beta-amyloid into clumps (called beta-amyloid

plaques) outside neurons and the accumulation of an

abnormal form of the protein tau (called tau tangles)

inside neurons are two of several brain changes

associated with Alzheimer’s disease.

Beta-amyloid and tau have different roles in Alzheimer’s.

Plaques and smaller accumulations of beta-amyloid may

damage neurons by interfering with neuron-to-neuron

communication at synapses. Inside neurons, tau tangles

block the transportation of nutrients and other

molecules essential for the normal function and survival

of neurons while harming connections between neurons.

Beta-amyloid and tau accumulation are followed by

damage to and destruction of neurons (called

neurodegeneration) and other brain cells.

Neurodegeneration, along with beta-amyloid and tau

accumulation, are key features of Alzheimer’s disease.

The presence of toxic beta-amyloid and tau proteins is

believed to activate immune system cells in the brain

called microglia. Microglia try to clear the toxic proteins

and debris from dead and dying cells. Chronic inflammation

may set in when the microglia can't keep up with all that

needs to be cleared.

Another brain change associated with Alzheimer’s disease

is atrophy (decreased brain volume) resulting from

neurodegeneration and other factors. While some degree

of brain atrophy is common in older age, even in people

who are cognitively healthy, atrophy is accelerated in

people with Alzheimer’s dementia.

Normal brain function

is further compromised by decreases in the brain's ability to

metabolize glucose, its main fuel.

Timing of Brain Changes

Researchers have gained insight into the timing of

these brain changes. Among people with rare genetic

mutations that cause Alzheimer’s disease for whom

long-term data have been collected, researchers have

found that levels of beta-amyloid significantly increased

starting 22 years before symptoms were expected to

develop (individuals with these genetic mutations usually

develop symptoms at the same or nearly the same age

as their parent with Alzheimer’s).

In another study,

abnormal levels of the neurofilament light chain protein,

a biomarker of neurodegeneration, were also found to

start 22 years before symptoms were expected to

develop.

A third group of researchers found that levels

of different types of tau protein increase when beta-

amyloid clumps together as amyloid plaques, and that

levels of these types of tau increase as early as two

decades before the characteristic mature tau tangles of

Alzheimer’s disease appear.

Researchers also found that

glucose metabolism starts decreasing 18 years before

expected symptom onset, and brain atrophy begins

13 years before expected symptom onset.

Brain Changes as Biomarkers

These brain changes are biomarkers of Alzheimer’s

disease. Biomarkers are biological changes that can be

measured to indicate the presence or absence of a

disease or the risk of developing a disease. For example,

the level of glucose in blood is a biomarker of diabetes,

and cholesterol level is a biomarker of cardiovascular

disease risk. Great progress has been made in measuring

Alzheimer’s disease biomarkers. For example, we can

now identify abnormal levels of beta-amyloid and tau in

cerebrospinal fluid (CSF, the fluid surrounding the brain),

and an imaging technique known as positron emission

tomography (PET) can produce pictures showing where

beta-amyloid and tau have accumulated in the brain. In

addition, many research groups are working on blood

tests for Alzheimer’s disease. If these blood tests prove

effective they could simplify and greatly speed-up

diagnosis of Alzheimer’s.

9Overview

Signs of Alzheimer’s Dementia Typical Age-Related Changes

Memory loss that disrupts daily life: One of the most common signs of Alzheimer’s dementia,

especially in the early stage, is forgetting recently learned information. Others include asking

the same questions over and over, and increasingly needing to rely on memory aids (for example,

reminder notes or electronic devices) or family members for things that used to be handled on

one’s own.

Sometimes forgetting names or

appointments, but remembering

them later.

Challenges in planning or solving problems: Some people experience changes in their ability to

develop and follow a plan or work with numbers. They may have trouble following a familiar recipe

or keeping track of monthly bills. They may have difficulty concentrating and take much longer to

do things than they did before.

Making occasional errors

when managing finances or

household bills.

Difficulty completing familiar tasks: People with Alzheimer’s often find it hard to complete daily

tasks. Sometimes, people have trouble driving to a familiar location, organizing a grocery list or

remembering the rules of a favorite game.

Occasionally needing help to

use microwave settings or record

a television show.

Confusion with time or place: People living with Alzheimer’s can lose track of dates, seasons

and the passage of time. They may have trouble understanding something if it is not happening

immediately. Sometimes they forget where they are or how they got there.

Getting confused about the

day of the week but figuring it

out later.

Trouble understanding visual images and spatial relationships: For some people, having vision

problems is a sign of Alzheimer’s. They may also have problems judging distance and determining

color and contrast, causing issues with driving.

Vision changes related to

cataracts.

New problems with words in speaking or writing: People living with Alzheimer’s may have trouble

following or joining a conversation. They may stop in the middle of a conversation and have no idea

how to continue or they may repeat themselves. They may struggle with vocabulary, have trouble

naming a familiar object or use the wrong name (e.g., calling a watch a “hand clock”).

Sometimes having trouble

finding the right word.

Misplacing things and losing the ability to retrace steps: People living with Alzheimer’s may put

things in unusual places. They may lose things and be unable to go back over their steps to find

them. They may accuse others of stealing, especially as the disease progresses.

Misplacing things from time

to time and retracing steps to

find them.

Decreased or poor judgment: Individuals may experience changes in judgment or decision-making.

For example, they may use poor judgment when dealing with money or pay less attention to

grooming or keeping themselves clean.

Making a bad decision or

mistake once in a while, such

as neglecting to schedule an oil

change for a car.

Withdrawal from work or social activities: People living with Alzheimer’s disease may experience

changes in the ability to hold or follow a conversation. As a result, they may withdraw from hobbies,

social activities or other engagements. They may have trouble keeping up with a favorite sports

team or activity.

Sometimes feeling uninterested

in family and social obligations.

Changes in mood, personality and behavior: The mood and personalities of people living with

Alzheimer’s can change. They can become confused, suspicious, depressed, fearful or anxious.

They may be easily upset at home, at work, with friends or when out of their comfort zones.

Developing very specific ways

of doing things and becoming

irritable when a routine is disrupted.

*For more information about the symptoms of Alzheimer’s, visit alz.org.

Signs of Alzheimer’s Dementia Compared With Typical Age-Related Changes*

Table

Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).10

Preclinical Alzheimer’s Disease

In this phase, individuals may have measurable brain changes that indicate the earliest signs of Alzheimer’s disease,

but they have not yet developed symptoms such as memory loss or difficulty thinking. Examples of Alzheimer's brain

changes that might be detected in this phase include abnormally increased levels and distribution of beta-amyloid and

tau and decreased metabolism of glucose as shown on positron emission tomography (PET) scans, as well as changes

in tau protein in cerebrospinal fluid (CSF).

45-47

When the early changes of Alzheimer’s disease occur, the brain

compensates for them, enabling individuals to continue to function normally.

Although research settings have the tools and expertise to identify some of the early brain changes of Alzheimer’s

disease, additional research is needed to fine-tune the tools’ accuracy before they become available for widespread use

in hospitals, doctors’ offices and other clinical settings. It is important to note that not all individuals with evidence of

Alzheimer’s-related brain changes go on to develop symptoms of MCI or dementia due to Alzheimer’s disease before

their deaths, even if they live for many years or decades after these biomarkers are detected.

48-50

On this continuum, there are three broad phases:

preclinical Alzheimer’s disease, mild cognitive impairment

(MCI) due to Alzheimer’s disease and dementia due to

Alzheimer’s disease, also called Alzheimer’s dementia

(see Figure 1).

40-43

The Alzheimer’s dementia phase is

further broken down into mild, moderate and

severe dementia.

While we know the Alzheimer’s disease continuum

starts with preclinical Alzheimer’s disease (no

symptoms) and ends with severe Alzheimer’s dementia

(severe symptoms), how long individuals spend in each

part of the continuum varies. The length of each part

of the continuum is influenced by age, genetics and

other factors.

The progression of Alzheimer’s disease from

brain changes that are unnoticeable by the

person affected to brain changes that cause

problems with memory and thinking, and

eventually physical disability, is called the

Alzheimer’s disease continuum.

Alzheimer’s Disease Continuum

Symptoms interfere

with most everyday

activities

Symptoms interfere

with many everyday

activities

Symptoms interfere

with some everyday

activities

Very mild symptoms

that may not interfere

with everyday activities

No symptoms but

possible biological

changes in the brain

Preclinical AD

Mild Cognitive

Impairment Due to AD

Mild Moderate

Dementia Due to ADDementia Due to AD

*Although these arrows are of equal size, the components of the AD continuum are not equal in duration.

Severe

Dementia Due to AD

Alzheimer’s Disease (AD) Continuum*

Figure

11Overview

MCI Due to Alzheimer’s Disease

People with MCI due to Alzheimer’s disease have biomarker evidence of Alzheimer’s brain changes plus new

but subtle symptoms such as problems with memory, language and thinking. These cognitive problems may

be noticeable to the individual, family members and friends, but not to others, and they may not interfere with

the individual’s ability to carry out everyday activities.

Everyone who develops Alzheimer’s dementia first experiences MCI, although it might not be recognized or

diagnosed because of the subtlety of symptoms. Among those with MCI, about 15% develop dementia after two

years.

About one-third develop dementia due to Alzheimer’s within five years.

However, some individuals

with MCI do not have additional cognitive decline or revert to normal cognition. Among population-based studies,

a systematic review and meta-analysis reported a reversion rate of 26%.

Identifying which individuals with MCI

are more likely to develop dementia is a major goal of current research.

Dementia Due to Alzheimer’s Disease

Dementia due to Alzheimer’s disease is characterized by noticeable memory, language, thinking or behavioral

symptoms that impair a person’s ability to function in daily life, combined with biomarker evidence of Alzheimer’s-

related brain changes. As Alzheimer’s disease progresses, individuals commonly experience multiple types of

symptoms that change with time. These symptoms reflect the degree of damage to neurons in different parts

of the brain. The pace at which symptoms of dementia advance from mild to moderate to severe differs from

person to person.

Mild Alzheimer’s Dementia

In the mild stage of Alzheimer’s dementia, most individuals are able to function independently in many areas but are

likely to require assistance with some activities to maximize independence and remain safe. They may still be able to

drive, work and participate in their favorite activities. They may need more time to complete common daily tasks.

Paying bills and making financial decisions may be especially challenging. The U.S. Social Security Administration

notes that people living with dementia are at an especially high risk of becoming victims of fraud and financial

abuse.

This may be because handling finances is a particularly complex cognitive activity made even harder by

declines in executive function. Executive function comprises the higher-level cognitive skills used to control and

coordinate other cognitive abilities and behaviors.

Declines in executive function can play out as difficulty

planning, organizing and carrying out tasks, as well as poor judgment, socially inappropriate behavior, and inability to

understand how one’s behavior or choices affect others.

Impaired executive function not only makes it challenging

for individuals with Alzheimer’s dementia to manage finances, but may also make them especially vulnerable to

financial abuse and scams because their ability to discern between well-intentioned and ill-intentioned behavior and

language in others may be diminished.

Moderate Alzheimer’s Dementia

In the moderate stage of Alzheimer’s dementia, which is often the longest stage, individuals experience more

problems with memory and language, are more likely to become confused, and find it harder to complete multistep

tasks such as bathing and dressing. They may become incontinent at times, begin to have problems recognizing

loved ones, and start showing personality and behavioral changes, including suspiciousness and agitation.

Severe Alzheimer’s Dementia

In the severe stage of Alzheimer’s dementia, individuals’ ability to communicate verbally is greatly diminished, and

they are likely to require around-the-clock care. Because of damage to areas of the brain involved in movement,

individuals may be unable to walk. As a result, they may spend most of their time in a wheelchair or bed. This loss of

mobility increases their vulnerability to physical complications including blood clots, skin infections and sepsis (a

condition that triggers body-wide inflammation that can result in organ failure). Damage to areas of the brain that

control swallowing makes it difficult to eat and drink. This can result in individuals swallowing food into the trachea

(windpipe) instead of the esophagus (food pipe). As a result, food particles may be deposited in the lungs and cause a

type of lung infection called aspiration pneumonia. Aspiration pneumonia is a contributing cause of death among

many individuals with Alzheimer’s dementia (see Mortality and Morbidity section, page 34).

12 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Mixed Dementia

Many people with dementia have brain changes

associated with more than one cause.

21, 31-36

This is called

mixed dementia. Some studies report that the majority

of people with the brain changes of Alzheimer’s disease

also have the brain changes of a second cause of

dementia on autopsy.

21, 22

One autopsy study showed

that of 447 older people who were believed to have

Alzheimer’s dementia when they died, only 3% had the

brain changes of Alzheimer’s disease alone, while 15%

had the brain changes of an entirely different cause of

dementia, and 82% had the brain changes of Alzheimer’s

disease plus at least one other cause of dementia.

Studies suggest that mixed dementia is the norm,

not just for those diagnosed with Alzheimer’s dementia but

also for those diagnosed with other types of dementia.

37, 38

Mixed dementia is especially common at advanced

ages.

31, 39

For example, those age 85 or older are more

likely than those younger than 85 to have evidence of

two or more causes of dementia.

27, 28

Having Alzheimer’s

brain changes plus brain changes of another type of

dementia increases one’s chances of having dementia

symptoms in one’s lifetime compared with having

Alzheimer’s brain changes alone.

21, 31

Mixed dementia

may also account for the wide variety of memory and

thinking problems experienced by people living with

dementia. It is currently not possible to determine with

certainty which symptoms are due to which dementia.

Treatments

Drug Treatments

A total of eight drugs are available for the treatment

of Alzheimer’s disease. Two of these drugs change the

underlying biology of Alzheimer’s and slow cognitive and

functional decline in some individuals. A third such drug

was under review by the FDA for potential approval at

press time. Six additional drugs have been approved that

treat the symptoms of Alzheimer’s dementia.

Treatments to Slow Alzheimer’s Disease

The drugs aducanumab and lecanemab change the

underlying biology of Alzheimer’s disease and delay

disease progression. They do this by helping remove

plaques and a form of beta-amyloid called protofibrils

that plays a role in the development of beta-amyloid

plaques. Earlier this year, the manufacturer of

aducanumab announced that the drug was being

discontinued.

The manufacturer said aducanumab

is being discontinued in order for the company "to

reprioritize its resources in Alzheimer's disease."

Aducanumab is not being discontinued for reasons

related to safety or efficacy. People who are now

receiving the drug as part of a clinical trial will continue

to have access to aducanumab until May 1, 2024, and

aducanumab will continue to be available until

November 1, 2024, for people who are now receiving

it by prescription.

Focusing on lecanemab, clinical trials of the drug showed

moderate slowing of cognitive and functional decline

in individuals with mild cognitive impairment (MCI) or

mild dementia due to Alzheimer’s.

Only individuals with

MCI or mild dementia due to Alzheimer’s and evidence of

beta-amyloid buildup in the brain based on brain imaging

or CSF analysis were eligible to participate in clinical

trials of lecanemab. Lecanemab is not a cure for

Alzheimer’s disease and not appropriate for all individuals

living with Alzheimer’s. Safety and effectiveness have

only been established in individuals living with MCI due

to Alzheimer’s disease and mild dementia due to

Alzheimer’s disease.

It’s important to note that while clinical trials showed

statistically significant differences in cognitive outcomes

between people randomized to receive lecanemab and

those randomized to receive placebo, the benefits of

lecanemab in the short term may be imperceptible to

those receiving them. Because lecanemab has been

approved fairly recently, we don’t know its effectiveness

over the long term, although extension studies, in which

people who volunteer for a clinical trial continue to

receive treatment after a trial is completed, are underway.

When Dementia-Like Symptoms

Are Not Dementia

It is important to note that some individuals

have dementia-like symptoms without the

progressive brain changes of Alzheimer’s or

other degenerative brain diseases. Causes of

dementia-like symptoms include depression,

untreated sleep apnea, delirium, side

effects of medications, Lyme disease, thyroid

problems, head injury, blood clots or tumors

in the brain, certain vitamin deficiencies

and excessive alcohol consumption. Unlike

Alzheimer’s and other dementias, the

dementia caused by these conditions often

may be reversed with treatment.

The differences between normal age-related

cognitive changes and the cognitive

changes of Alzheimer’s disease can be subtle

(see Table 2, page 9). People experiencing

cognitive changes should seek medical

help to determine if the changes are normal

for their age, are reversible, or may be a

symptom of Alzheimer’s or another dementia.

13Overview

Anti-amyloid treatments such as aducanumab and

lecanemab can have side effects. They can cause serious

allergic reactions as well as amyloid-related imaging

abnormalities (ARIA), infusion-related reactions,

headaches and falls.

ARIA is a common side effect that does not usually cause

symptoms but can be serious. It is typically a temporary

swelling in areas of the brain and usually resolves over

time. Some people may also have small spots of bleeding

in or on the surface of the brain along with swelling.

Most people with swelling who experience ARIA do not

have symptoms. Those who do experience symptoms

of ARIA may have headache, dizziness, nausea, confusion

and vision changes. Management of ARIA may include

discontinuation of the medication either temporarily

or indefinitely.

Individuals with two copies of the APOE-e4 gene are

at higher risk of developing ARIA.

The FDA encourages

APOE-e4 testing before starting treatment. Prior to

testing, doctors should discuss with patients the risk of

ARIA and the implications of genetic testing results.

These are not all the possible side effects. Individuals

should talk with their doctors to develop a treatment

plan that is right for them, including weighing the

benefits and risks of all approved therapies.

Appropriate use recommendations have been

developed to guide physicians in determining which

individuals should and should not receive treatment with

lecanemab.

The recommendations also discuss ARIA

monitoring and management, key points to share with

individuals living with dementia and their care partners,

and incorporating treatments into clinical practice.

A variety of other treatments targeting the underlying

biology of Alzheimer’s disease are being developed.

They address many of the known brain changes

associated with Alzheimer’s disease, including but not

limited to tau accumulation, inflammation, altered cell

metabolism and oxidative stress (damage from toxic

oxygen molecules).

60,61

As of January 1, 2023,

156 clinical trials were underway testing additional

disease-modifying therapies.

Treatments to Address Cognitive and Behavioral Symptoms

Five of these eight drugs — donepezil, rivastigmine,

galantamine, memantine and memantine combined with

donepezil — are aimed at treating cognitive symptoms.

They do not affect the underlying brain changes that

cause Alzheimer’s, nor do they slow or stop the course

of the disease. With the exception of memantine, they

treat symptoms by increasing the amount of chemicals

called neurotransmitters in the brain. Neurotransmitters

help brain cells communicate with each other. Memantine

protects the brain from excessive levels of a

neurotransmitter called glutamate, which overstimulates

neurons and can damage them. These five drugs may

have side effects, such as headaches and nausea. These

are not all the possible side effects. As with lecanemab,

individuals should talk with their doctors to develop a

treatment plan that is right for them, including weighing

the benefits and risks of all approved therapies.

One of the eight drugs, brexpiprazole, has been approved

by the FDA to treat agitation that can occur in

Alzheimer’s. Agitation is common in Alzheimer’s disease,

with 60% of people with MCI and 76% of people with

Alzheimer’s dementia experiencing agitation.

Brexpiprazole is thought to lessen agitation through its

effects on dopamine and serotonin receptors in the

brain. Brexpiprazole is also FDA-approved for the

treatment of major depressive disorder. It's important to

note that brexpiprazole is an atypical antipsychotic drug,

Atypical antipsychotics have been associated with an

increased risk of stroke and death in older patients with

dementia-related psychosis.

64, 65

Non-drug interventions

should be tried first.

In addition to these eight drugs, the drug suvorexant,

approved for insomnia, has been shown in clinical trials

to be effective in treating problems with falling asleep

and staying asleep that can occur in people with mild to

moderate Alzheimer's disease. Suvorexant inhibits the

activity of orexin, a type of neurotransmitter involved

in the sleep-wake cycle. Possible side effects include,

but are not limited to, impaired alertness and motor

coordination (including impaired driving), worsening of

depression or suicidal thinking, complex sleep behaviors

(such as sleep-walking and sleep-driving), sleep paralysis

and compromised respiratory function.

Why insomnia and other sleeping problems occur in

people living with Alzheimer's is unclear. However,

researchers have found that Alzheimer’s brain changes

disrupt the sleep-wake cycle, leading to increased sleep

fragmentation and wakefulness and decreased slow-

wave sleep.

Researchers have also found that sleep

abnormalities accelerate the accumulation of beta-

amyloid and release of toxic tau in the brain, increasing

the risk of dementia. In this way, sleep problems may be

bidirectional, with Alzheimer’s disease increasing the risk

of sleep disturbances and sleep disturbances increasing

the risk of Alzheimer’s.

66, 67

More research is needed to

better understand the relationship between sleep

abnormalities and Alzheimer’s. About one-quarter of

people with dementia have problems sleeping, and the

problems can worsen as the disease progresses.

As of January 1, 2023, 31 clinical trials were underway

testing additional agents to treat Alzheimer’s cognitive,

behavioral and neuropsychiatric symptoms.

14 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Non-Drug Treatments

There are also non-drug treatments for the symptoms

of Alzheimer’s disease. Non-drug treatments do not

change the underlying biology of the disease. They are

often used with the goals of maintaining or improving

cognitive function, overall quality of life and engagement,

and the ability to perform activities of daily living.

Non-drug treatments include physical activity,

memory and orientation exercises, music- and art-based

therapies, and many others. Non-drug treatments may

be used with a more specific goal of reducing behavioral

and psychological symptoms such as depression, apathy,

wandering, sleep disturbances, agitation and aggression.

For example, a review and analysis of nonpharmacologic

treatments for agitation and aggression in people with

dementia concluded that non-drug interventions

seemed to be more effective than pharmacologic

interventions for reducing aggression and agitation.

Risk Factors for Alzheimer’s Dementia

The vast majority of people who develop Alzheimer’s

dementia are age 65 or older. This is called late-onset

Alzheimer’s dementia. Experts believe that Alzheimer’s

dementia, like other common chronic diseases and

conditions, develops as a result of multiple factors

rather than a single cause. Exceptions are cases of

Alzheimer’s related to trisomy 21 in Down syndrome

and rare cases of Alzheimer’s disease related to specific

genetic mutations.

Age, Genetics and Family History

The greatest risk factors for Alzheimer’s dementia are

older age,

70, 71

genetics — especially the e4 form of the

apolipoprotein E (APOE) gene

72, 73

— and having a family

history of Alzheimer’s dementia.

74-77

Age

Age is the greatest of these three risk factors. The

percentage of people with Alzheimer’s dementia

increases dramatically with age. Five percent of people

age 65 to 74, 13.2% of people age 75 to 84, and 33.4%

of people age 85 or older have Alzheimer’s dementia

(see Prevalence section, page 22). The aging of the

population, including the baby-boom generation, will

significantly increase the number of people in the

United States with Alzheimer’s dementia.

However,

it is important to note that Alzheimer’s dementia is

not a normal part of aging, and older age alone is not

sufficient to cause Alzheimer’s dementia.

Actions for the Person Living with Dementia

and Their Caregivers

These actions include:

• Becoming educated about the disease.

• Maintaining a sense of self and relationships

with others.

- Identifying and participating in activities that

are meaningful and bring purpose to one’s life.

- Identifying opportunities to connect with

others living with dementia and their caregivers

and participating in related activities.

• Planning for the future, including future

health care needs, changes in employment

and financial changes.

Actions for Health Care Providers and Other

Members of the Health Care Workforce

These actions include:

• Appropriate use of available treatment options.

• Effective management of coexisting conditions.

• Coordination of care among health care providers,

other health care professionals and lay caregivers.

• Directing family caregivers to resources to help

them learn how to manage the day-to-day needs

of the individual living with dementia.

To learn more, see the Caregiving section (page 42)

and Workforce section (page 58). Visit alz.org to

learn more about Alzheimer’s disease, as well as

practical information for living with Alzheimer’s and

being a caregiver.

Actions to Proactively Manage Dementia

Proactive management of Alzheimer’s and other dementias can improve the quality of life of affected

individuals and their caregivers. Proactive management includes actions by the person living with dementia

and their caregivers and actions by health care providers and other members of the health care workforce.

15Overview

Genetics

Researchers have found many genes that increase or

decrease the risk of Alzheimer’s dementia. In fact, in

2022 researchers identified 31 new genes that appear

to affect biological processes known to be at play in

Alzheimer’s disease.

Of the many genes that increase

risk, APOE-e4 has the strongest impact on risk of

late-onset Alzheimer’s dementia. APOE provides the

blueprint for a protein that transports cholesterol in

the bloodstream. Everyone inherits one of three forms

(alleles) of the APOE gene — e2, e3 or e4 — from

each parent, resulting in six possible APOE pairs: e2/e2,

e2/e3, e2/e4, e3/e3, e3/e4 and e4/e4.

Having the e4 form of APOE increases one’s risk of

developing Alzheimer’s dementia compared with having

the e3 or e2 forms but does not guarantee that an

individual will develop Alzheimer’s dementia. Having the

e2 form may decrease one’s risk compared with having

the e3 or e4 form. Individuals with the e2 form who

develop Alzheimer’s dementia generally do so later in life

than those without the e2 form. The e3 form is thought

to have a neutral effect on Alzheimer’s dementia risk.

In general, the risk of developing Alzheimer’s dementia

increases with inheriting one copy of the e4 form and

increases further still with inheriting two copies of the

e4 form, compared with inheriting only copies of the e2

or e3 forms.

79-81

For example, based on data from a

study in Europe and a study in the United States, of

*Data for APOE pairs in other populations are not available.

Percentages do not total 100 due to rounding.

†

Study provided a percentage for women and a percentage for men.

Percentages represent the range for the two.

Created from data from Rajan et al

and Kataoka et al.

APOE Pair

African

Americans

European

Americans

American

Indians

†

e3/e3 45.2 63.4 71.6 - 73.2

e3/e4 28.6 21.4 22.7 - 23.9

e3/e2 15.1 10.2 2.6 - 3.0

e2/e4 5.7 2.4 0.5

e4/e4 4.5 2.4 1.0 - 1.2

e2/e2 0.7 0.2 0.0 - 0.1

Percentage of African Americans, European Americans

and American Indians with Speciﬁed APOE Pairs*

This report keeps the racial, ethnic and other

population identiﬁers used in source documents

when describing ﬁndings from speciﬁc studies.

Table

people age 65-69, the risk of developing dementia by

the early to mid-80s was 5% to 7% among those with no

copies of the e4 form, 15% to 16% among those with

one copy, and 31% to 40% among those with two

copies.

In addition, those with the e4 form are more

likely to have beta-amyloid accumulation and Alzheimer’s

dementia at a younger age than those with the e2 or e3

forms of the APOE gene.

A meta-analysis including 20 published articles

describing the frequency of the e4 form among people

in the United States who had been diagnosed with

Alzheimer’s dementia found that 56% had one copy of

the APOE-e4 gene, and 11% had two copies of the

APOE-e4 gene.

Another study found that among

1,770 diagnosed individuals from 26 Alzheimer’s Disease

Research Centers across the United States, 65% had at

least one copy of the APOE-e4 gene.

Most of the research to date associating APOE-e4

with increased risk of Alzheimer’s dementia has studied

White individuals. Studies of this association in Black and

Hispanic populations have had inconsistent results. For

example, some have found that having the e4 allele did

not increase risk among Black people,

86-88

while other

studies have found that it significantly increased risk.

89-92

In addition, researchers have found differences in the

frequency of APOE pairs among racial and ethnic

groups. For instance, data show that a higher percentage

of African Americans have at least one copy of the e4

allele (see Table 3) than European American and

American Indian people.

86, 87, 93, 94

Among individuals of

African ancestry who have one copy of e3 and one of e4,

those with a particular variant of e3 called R145C are at

increased risk of developing Alzheimer’s dementia

compared with those who do not have this variant.

Researchers have also found that another genetic

factor, the ATP-binding cassette transporter (ABCA7)

protein, doubles the risk of Alzheimer’s dementia in

Black people with ABCA7 compared with Black people

without ABCA7.

To better understand inconsistencies in the effect of

APOE-e4 in Hispanic/Latino groups, one research team

analyzed the effect of APOE-e4 in 4,183 individuals from

six Latino backgrounds: Central American, Cuban,

Dominican, Mexican, Puerto Rican and South American.

16 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

They found that the effect of APOE-e4 on cognitive

decline differed among groups, suggesting that factors

related to geographic background and genetic ancestry

may alter the extent to which APOE-e4 contributes to

cognitive decline.

These inconsistencies point to the need for more

research to better understand the genetic mechanisms

involved in Alzheimer’s risk among different racial and

ethnic groups.

Trisomy in Down Syndrome

In Down syndrome, an individual is born with three

copies of chromosome 21 (called trisomy 21) instead of

two. People with Down syndrome have an increased risk

of developing Alzheimer’s dementia, and this is believed

to be related to trisomy 21. Chromosome 21 includes

the gene that encodes for the production of the

amyloid precursor protein (APP), which in people with

Alzheimer’s is cut into beta-amyloid fragments that

accumulate into plaques. Having an extra copy of

chromosome 21 may increase the production of

beta-amyloid fragments in the brain.

Overall, people with Down syndrome develop

Alzheimer’s dementia at an earlier age than people

without Down syndrome. By age 40, most people with

Down syndrome have significant levels of beta-amyloid

plaques and tau tangles in their brains.

According to

the National Down Syndrome Society, about 30% of

people with Down syndrome who are in their 50s, and

about 50% of those in their 60s, have Alzheimer’s

disease dementia.

Emerging research suggests that

Alzheimer’s brain changes in people with Down

syndrome may be even more common than these

percentages indicate.

99, 100

As with all adults, advancing age increases the likelihood

that a person with Down syndrome will exhibit

symptoms of Alzheimer’s dementia. Life expectancy of

people with Down syndrome has more than doubled in

the last 70 years, which corresponds to a growing

population of adults living with both this condition and

dementia. Dementia is the leading cause of death for

adults with Down syndrome.

101

Care for people with

Down syndrome and dementia is especially challenging

due to the intellectual, cognitive and communication

impairments associated with Down syndrome that are

present in addition to the cognitive impairments of

dementia. Making advances in the care of people living

with Down syndrome and dementia is stymied by the

common exclusion of people with Down syndrome from

research studies.

Genetic Mutations

An estimated 1% or less of people living with Alzheimer’s

dementia develop the disease as a result of mutations to

any of three specific genes.

102

(A genetic mutation is an

abnormal change in the sequence of chemical pairs that

make up genes.) This is called dominantly inherited or

autosomal dominant Alzheimer’s dementia. These

mutations involve the amyloid protein precursor gene

and the genes for the presenilin 1 and presenilin 2

proteins. Symptoms tend to develop before age 65 and

sometimes as young as age 30. Because of this,

individuals with these mutations may also be referred to

as having younger-onset Alzheimer’s dementia. People

who inherit an Alzheimer’s mutation to these genes are

virtually guaranteed to develop the disease if they live a

normal life span.

103

However, rare cases of individuals

who have one of these mutations and do not develop

dementia symptoms until late life have recently been

reported.

104, 105

The experiences of these individuals

highlight the possibility of being resilient to Alzheimer’s

dementia despite genetic mutations, and point to new

areas of investigation to better understand resilience.

Family History

A family history of Alzheimer’s dementia is not necessary

for an individual to develop the disease. However,

individuals who have or had a parent or sibling (first-

degree relative) with Alzheimer’s dementia are more likely

to develop the disease than those who do not have a

first-degree relative with Alzheimer’s dementia.

74, 81

Those

who have more than one first-degree relative with

Alzheimer’s dementia are at even higher risk.

A large,

population-based study found that having a parent with

dementia increases risk independent of known genetic

risk factors such as APOE-e4.

106

When diseases run in

families, heredity (genetics) and shared non-genetic

factors (for example, access to healthy foods and habits

related to physical activity) may play a role.

Modiﬁable Risk Factors

Although age, genetics and family history cannot be

changed, some risk factors can be changed or modified

to reduce the risk of cognitive decline and dementia.

Examples of modifiable risk factors are physical activity,

smoking, education, staying socially and mentally active,

blood pressure and diet. In fact, The Lancet Commission

report on dementia prevention, intervention and care

suggests that up to 40% of dementia cases may be

attributable to modifiable risk factors.

107

A 2022 study

found that nearly 37% of cases of dementia in the United

States were associated with eight modifiable risk factors,

the most common being midlife obesity, followed by

physical inactivity and low educational attainment.

108

Overview

In addition to The Lancet Commission report, a number

of other influential reports point to the promising role

of addressing these factors to reduce risk of dementia

and cognitive decline. These include the 2019 World

Health Organization (WHO) recommendations to reduce

risk of cognitive decline and dementia and a report from

the National Academy of Medicine.

109, 110

There are many

potentially modifiable risk factors for Alzheimer’s disease

— too many to discuss in a single report. This section

focuses on some of the modifiable risk factors with

substantial supportive evidence identified in The Lancet

Commission report, the WHO recommendations and

the National Academy of Medicine report.

As mentioned earlier, most people living with dementia

have the brain changes of Alzheimer’s disease as well

as another form of dementia (see mixed dementia,

page 12), and it can be difficult to tell which brain changes

are the cause of dementia. As a result, research linking

risk factors to dementia is often assumed to support a link

between risk factors and Alzheimer’s disease. However,

additional research is needed to disentangle risk factors

that are specific to Alzheimer’s disease from those that

are specific to other causes of dementia.

111

Cardiovascular Health Factors

Brain health is affected by the health of the heart and

blood vessels. Although the brain makes up just 2% of

body weight, it consumes 20% of the body’s oxygen and

energy supplies.

112

A healthy heart ensures that enough

blood is pumped to the brain, while healthy blood vessels

enable the oxygen- and nutrient-rich blood to reach the

brain so it can function normally. One of the clearest

examples of this relationship is how stroke, which occurs

when a blood vessel in the brain is blocked or bursts,

markedly increases dementia risk.

113

Many factors that increase the risk of cardiovascular

disease are also associated with a higher risk of

dementia.

114

These factors include hypertension,

91, 115-117

diabetes

118-120

and smoking.

121, 122

Likewise, factors that

decrease risk of cardiovascular disease are associated

with decreased risk of dementia. Physical activity is an

example of a modifiable factor that reduces risk of

cardiovascular disease and may also reduce risk of

dementia.

123-133

Although researchers have studied a

wide variety of physical activities, they do not know if

specific types of physical activity are more effective at

decreasing risk, or how the frequency or duration of

physical activity may influence the effectiveness of

physical activity.

In addition to physical activity, many but not all studies

suggest that consuming a heart-healthy diet may be

associated with reduced dementia risk.

134-142

A heart-

healthy diet emphasizes fruits, vegetables, whole grains,

fish, chicken, nuts, legumes and healthy fats such as olive

oil while limiting saturated fats, red meat and sugar.

Examples of heart-healthy diets include but are not

limited to the Mediterranean, DASH (Dietary Approaches

to Stop Hypertension) and MIND (Mediterranean-DASH

Intervention for Neurodegenerative Delay) diets.

143-145

However, a recent trial of the MIND diet did not show a

difference in cognitive change for people following the

diet compared with a control group over three years.

141

It’s possible that dietary changes take many years to

influence dementia risk. No single food, beverage,

ingredient, vitamin or supplement has been proven to

prevent or cure Alzheimer's or any other dementia.

146

The risk of developing dementia in later life can be

influenced by health factors present years and

decades earlier. For example, midlife obesity,

115, 147, 148

hypertension

91, 115-117

and high cholesterol

149

are among

the midlife factors associated with an increased risk of

dementia in later life.

Today, researchers are looking at potential risk

factors present even earlier in life, such as in young

adulthood, to understand how health factors

experienced throughout one’s life span may affect later

life cognitive health.

150-154

This life course approach

offers the potential to inform preventive measures

across multiple stages of life.

Education

Researchers have long reported that people with

more years of formal education are at lower risk for

Alzheimer’s and other dementias than those with fewer

years of formal education.

86, 155-160

Much of the research

linking formal education to decreased risk of Alzheimer’s

dementia was conducted without the benefit of

technological advances such as positron emission

tomography (PET) imaging of the brain that might shed

light on whether education affects Alzheimer’s

biomarkers such as beta-amyloid and tau accumulation

that lead to dementia symptoms. More recent research

incorporating these technological advances suggests

that rather than reducing the risk of developing

Alzheimer’s brain changes, formal education may help

sustain cognitive function in mid- and late life and delay

the development of symptoms.

161, 162

18 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

To that point, some researchers believe that having

more years of education builds “cognitive reserve.”

Cognitive reserve refers to the brain’s ability to make

flexible and efficient use of cognitive networks

(networks of neuron-to-neuron connections) to

enable a person to continue to carry out cognitive

tasks despite brain changes.

163, 164

The number of years

of formal education is not the only determinant of

cognitive reserve. Having a mentally stimulating job

and engaging in other mentally stimulating activities

may also help build cognitive reserve.

165-170

Other researchers emphasize the indirect effects of

the number of years of formal education, such as its

effects on dementia risk through socioeconomic status

(SES). SES typically is defined as access to economic

resources, including income, education, employment

and occupation, but also includes factors such as

financial security and perceived social standing. Having

fewer years of formal education is associated with

lower median income and lower SES.

171

SES has many

effects on one’s health that are relevant to dementia

risk. Researchers report that lower SES is associated

with being less physically active,

172

having a higher

risk of diabetes,

173-175

and being more likely to have

hypertension

176

and to smoke

177

— all of which are risk

factors for dementia. In fact, in 2022 researchers

reported that SES is associated with changes in brain

anatomy, including gray matter volume, that may affect

overall cognitive ability.

178

In addition, lower SES may decrease one’s access to

and ability to afford heart-healthy foods that support

brain health; decrease one’s ability to afford health

care or medical treatments, such as treatments for

cardiovascular risk factors that are closely linked to

brain health; and limit one’s access to physically safe

housing and employment. Housing and employment

conditions can also influence brain health–promoting

activities and health care, as well as influence one’s

exposure to substances that are toxic to the nervous

system such as air pollution,

179

lead

180

and pesticides.

181

It’s important to realize that SES is not a biological

entity, but rather a social construct reflecting

inequities in how individuals and populations are

treated and have been treated over time. It also

reflects inequities in the perceived social standing of

individuals and populations based on factors largely

outside of their control.

Social and Cognitive Engagement

Additional studies suggest that remaining socially and

cognitively active throughout life may support brain

health and possibly reduce the risk of Alzheimer’s and

other dementias.

123, 182-190

Socially and cognitively

stimulating activity might help build cognitive reserve.

However, it is also possible that undetected cognitive

impairment decreases one’s interest in and ability to

participate in activities involving social and cognitive

skills. In this case, the association may reflect the effect

of cognitive impairment on social and cognitive

engagement rather than the effect of engagement on

dementia risk.

188

More research is needed to better

understand the mechanisms that link social and cognitive

engagement to dementia risk, along with types of

activities that provide benefit.

Traumatic Brain Injury (TBI)

TBI is a head injury caused by an external force that

results in disruption of normal brain function.

191

TBI is

associated with an increased risk of dementia.

192-194

According to the Centers for Disease Control and

Prevention (CDC), in 2020, people age 75 and older

had the highest numbers and rates of TBI-related

hospitalizations and deaths, accounting for about

32% of TBI-related hospitalizations and 28% of TBI-

related deaths.

195

In 2018 and 2019, falls were the

leading cause of TBI-related deaths among those 75

and older.

191

Two ways to classify the severity of TBI are by the

duration of loss of consciousness or post-traumatic

amnesia

196

and by the individual’s initial score on the

15-point Glasgow Coma Scale.

197

• Mild TBI (also known as a concussion) is characterized

by loss of consciousness or post-traumatic amnesia

lasting 30 minutes or less, or an initial Glasgow score

of 13 to 15; about 75% of TBIs are mild.

198

• Moderate TBI is characterized by loss of

consciousness or post-traumatic amnesia lasting

more than 30 minutes but less than 24 hours, or an

initial Glasgow score of 9 to 12.

• Severe TBI is characterized by loss of consciousness

or post-traumatic amnesia lasting 24 hours or more,

or an initial Glasgow score of 8 or less.

Moderate and severe TBIs increase risk of dementia

between 2- and 4-fold compared with risk among

individuals without a history of moderate or severe

TBI.

199

In this case, the cause of dementia is almost

always brain damage attributable to the TBI, not

Alzheimer’s disease. The risk of dementia increases with

the number of TBIs sustained.

192-194

In addition, studies

have found that people with a history of TBI who

develop dementia do so at a younger age than those

without a history of TBI.

200, 201

Whether TBI causes

dementia, other conditions that lead to dementia, or

both, is being investigated.

The relationship between TBI and chronic traumatic

encephalopathy (CTE) is a growing area of research. Like

Alzheimer’s disease, CTE is characterized by tangles of an

abnormal form of the protein tau in the brain. Beta-

amyloid plaques may also be present, with one study

indicating that more than 50% of individuals with CTE had

beta-amyloid plaques.

202, 203

The brain changes of CTE can

only be identified at autopsy. The greatest risk factor for

developing CTE-related brain changes is repetitive brain

trauma — repeated, forceful blows to the head that do

not, individually, result in symptoms.

204

Among former

amateur and professional football players, the odds of

developing CTE increased 30% per year played.

205

A review

of published articles examining CTE suggests that the

relationship between these repeated impacts and

CTE is likely causal.

206

Other Risk Factors

As mentioned earlier, there are many potentially

modifiable risk factors for dementia. Among those with

growing supportive evidence are the following.

Sleep

Among the many factors being studied is inadequate

sleep or poor sleep quality.

207-209

Researchers have found

that an important function of sleep is the removal of

toxic beta-amyloid and other substances from the

brain.

210, 211

Inadequate or poor sleep may compromise

the brain’s ability to remove beta-amyloid and other

toxins, enabling levels of toxins to remain elevated. In

addition, poor sleep quality such as that caused by

obstructive sleep apnea may increase risk by interfering

with blood flow to the brain and normal patterns of

brain activity that promote memory and attention.

212, 213

As discussed earlier, many researchers believe that the

relationship between sleep and Alzheimer’s disease is

bidirectional, meaning that not only may poor sleep

increase one’s risk of Alzheimer’s, but also that the brain

changes of Alzheimer’s may increase the risk of poor

sleep.

214-216

For example, increases in beta-amyloid and

tau may interrupt the sleep-wake cycle,

217

leading to

increased sleep fragmentation and wakefulness and

decreased slow-wave sleep.

Poor sleep may have

similar bidirectional relationships with other causes of

dementia, including poor cerebrovascular health.

218

Air Pollution

There is also rapidly emerging evidence on how

exposure to toxicants in the environment, especially air

pollution, may be related to dementia risk. A number of

different air pollutants have been studied in relation to

cognition, cognitive decline and dementia itself. The

most consistent and rigorous results concern fine

particulate matter (PM) air pollution. PM consists of tiny

solid particles and liquid droplets generated by fuel

combustion, fires and processes that produce dust.

2.5

, particulate matter that is 2.5 microns in diameter

or smaller, is small enough to be inhaled deeply into the

lungs. This subset of PM particles has been shown to

have the greatest health impact and is the focus in most

studies. Based on its sweeping review in 2019, the U.S.

Environmental Protection Agency judged long-term

exposure to PM

2.5

as “likely to be causal” in relation to

“nervous system effects.”

219

Studies specific to dementia

and related outcomes have reported that higher

long-term exposure to PM

2.5

is associated with worse

cognitive decline,

179, 220

reduced brain volumes

179

and

increased rates of incident (newly onset) dementia.

220-222

Whether air pollution promotes the brain changes of

Alzheimer’s or other dementias is unclear.

Critical illness in older adults

A growing body of evidence suggests that critical illness

and medical encounters such as hospitalization in older

people increase their risk of long-term cognitive

impairment and dementia.

223-227

There are a number of

ways that critical illness and aspects of the hospital

experience may affect the brain.

228

One example is that

experiencing hospitalization may make older adults more

vulnerable to the existing brain changes of dementia.

229

This is not to suggest that hospitalization should be

avoided if one is ill; rather, researchers are focusing on

specific aspects of hospitalization, such as prolonged

sedation, immobilization, and lack of family engagement

that may increase risk of cognitive impairment.

228

Furthermore, experiencing delirium — a sudden and

transient state of confusion common in hospitalized

older adults — has been linked to long-term cognitive

decline and dementia.

228,230

Modifying these aspects

of hospitalization may decrease risk of cognitive decline.

In addition, better preventive health measures and

improved and expanded health care coordination may

help to prevent critical illness and subsequent

hospitalization and the negative cognitive outcomes

that may follow.

Additional research is needed to build the evidence for

these and other risk factors being investigated and,

importantly, to determine how such risk factors may

vary for different causes of dementia, across the

lifecourse, and among different racial and ethnic groups.

Overview

20 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Looking to the Future

Importance of Biomarkers

The discovery that Alzheimer’s disease begins 20 years

or more before the onset of symptoms suggests that

there is a substantial window of time in which we may

be able to intervene in the progression of the disease.

Scientific advances are already helping the field to make

progress in these presymptomatic years. For example,

advances in the identification of biomarkers for

Alzheimer’s disease make it possible to identify

individuals who have beta-amyloid accumulation in

the brain and who may qualify for clinical trials of

experimental treatments that aim to reduce the

accumulated beta-amyloid and in doing so prevent or

delay the onset of symptoms. Biomarkers also enable

earlier detection of the brain changes of Alzheimer’s

disease, giving those affected the opportunity to address

modifiable risk factors that may slow or delay cognitive

decline. Biomarkers are already accelerating the

development of new treatments by making it possible for

clinical trials to specifically recruit individuals with the

brain changes that experimental therapies target. In

addition, biomarker, basic science and other research

advances offer the potential to expand the field’s

understanding of which therapies or combination of

therapies may be most effective at which points in the

Alzheimer's disease continuum.

When validated biomarker tests become available for

routine use in health care providers’ offices and other

clinical settings, it will be important to provide

educational materials to help individuals and their

families understand the risks and benefits of biomarker

tests, make informed decisions about whether to have

biomarker testing, and know what to expect in care after

testing.

231, 232

On a broader scale, biomarker disclosure

may have social and societal implications. For example,

biomarker results that are positive for increased

dementia risk and that are shared with others may result

in individuals experiencing the social stigma and

discrimination so often experienced by people living with

dementia, even though individuals with increased risk may

never develop dementia.

233

In addition, disclosure may well

highlight the need for reform in societal areas such as

health insurance coverage and costs, the capacity of the

health care workforce, and health equity.

233

The Need for Increased Diversity in Research

Participation

A fuller understanding of Alzheimer’s — from its causes

to how to prevent, manage and treat it — depends on

crucial factors outside of biomarker, basic science and

other research advances. Among these is the inclusion

of participants from diverse racial and ethnic groups in

research. The lack of inclusion has several consequences.

First, without adequate data from diverse racial and

ethnic groups, the current and future burden of

Alzheimer’s disease and Alzheimer’s dementia in the

United States cannot be accurately measured.

234

Such

data is necessary because the populations of older adults

from these groups make up nearly a quarter of the

nation’s older adult population, and that share is

projected to grow.

235

Second, current data indicate that,

compared with non-Hispanic White older adults, Black

and Hispanic older adults are at increased risk for

Alzheimer’s dementia (see Prevalence section).

Alzheimer’s research with too few Black and Hispanic

participants to reflect the proportion of these groups in

the overall population largely ignores populations who

bear the greatest risk. As a result, risk factors common

in these populations but less common in non-Hispanic

White older adults are likely to be poorly understood. In

addition, lack of inclusion limits our ability to understand

whether and how dementia risk factors and

interventions work in populations that carry different

baseline susceptibility to Alzheimer’s disease including

those with Down syndrome.

Inclusion is more than a matter of enrolling more

participants from underrepresented groups. Increasing

diversity among researchers and engaging with and

seeking input from marginalized communities are also

important. Improving inclusion in all of these ways

expands the range of lived experiences among

participants and the extent to which those experiences

are known and become topics of investigation.

236

Only

by improving representation in the participation and

leadership of clinical trials, observational studies and

other investigations will everyone have the potential to

benefit from advances in dementia research.

Prevalence

An estimated 6.9 million

Americans are living with

Alzheimer's dementia.

This section reports on the number and

proportion of people with Alzheimer’s

dementia to describe the magnitude of the

burden of Alzheimer’s dementia on

communities, health care systems and social

safety nets. The prevalence of Alzheimer’s

dementia refers to the number and proportion

of people in a population who have Alzheimer’s

dementia at a given point in time. Incidence

refers to the number or rate of new cases per

year, often expressed as the number of people

per 100,000 who newly develop the condition

in a year. This section reports estimates from

several studies of the number of people and

proportion of the population with Alzheimer’s

or other dementias. Those estimates vary

depending on how each study was conducted.

The number and proportion of Americans with

Alzheimer’s or other dementias is expected to continue

to grow in coming years because the risk of dementia

increases with advancing age. The population of

Americans age 65 and older is projected to grow from

58 million in 2022 to 82 million by 2050.

237

By 2030, all

members of the of the baby-boom generation (Americans

born between 1946 and 1964) will be age 65 or older,

238

the age range of greatest risk of Alzheimer’s dementia;

239

in fact, the oldest members of the baby-boom generation

turned age 75 in 2021. A number of recent studies

have reported that the incidence rate of Alzheimer’s

and other dementias appears to have declined in recent

decades (see “Trends in the Prevalence and Incidence of

Alzheimer’s Dementia Over Time” in this section). This

decline in incidence has been attributed to improvements

over the 20th century in modifiable risk factors for

dementia, such as increased prevention and treatment of

hypertension and greater educational attainment.

240

It is

Millions of Americans are living with Alzheimer’s or other

dementias. As the size of the U.S. population age 65 and older

continues to grow, so too will the number and proportion of

Americans with Alzheimer’s or other dementias.

Prevalence of Alzheimer’s and Other

Dementias in the United States

An estimated 6.9 million Americans age 65 and older

are living with Alzheimer’s dementia in 2024.

A2,241

Seventy-three percent are age 75 or older (see Figure 2,

page 23).

241

Of the total U.S. population:

• About 1 in 9 people (10.9%) age 65 and older has

Alzheimer’s dementia.

A2,241

• The percentage of people with Alzheimer’s dementia

increases with age: 5.0% of people age 65 to 74,

13.2% of people age 75 to 84, and 33.4% of people

age 85 and older have Alzheimer’s dementia.

A2, 241

People younger than 65 can also develop Alzheimer's

dementia. Although prevalence studies of younger-

onset dementia in the U.S. are limited, researchers

believe about 110 of every 100,000 people age 30 to

64 years, or about 200,000 Americans in total, have

younger-onset dementia.

242

The estimated number of people age 65 and older with

Alzheimer’s dementia comes from an updated study using

the latest data from the 2024 population projections from

the U.S. Census Bureau and the Chicago Health and Aging

Project (CHAP), a population-based study of chronic

health conditions of older people.

241

unknown how COVID-19, including infection with SARS-

CoV-2 (the virus that causes COVID-19), mortality from

COVID-19, and changes in health care access resulting

from the COVID-19 pandemic will influence the number

and proportion of people in the U.S. with Alzheimer’s

dementia in years to come. However, even with this

potentially lower incidence rate and the impact of COVID

on people at risk of dementia, the absolute number of

people with Alzheimer’s and other dementias is expected

to continue growing because of the large increase in the

number of adults age 65 and older, the age group that is

at increased risk of Alzheimer’s and many other dementias.

22 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Whereas CHAP generated estimates specific to

Alzheimer’s dementia, national estimates of the

prevalence of all dementias combined are available from

other population-based studies, including the Health

and Retirement Study (HRS), a nationally representative

sample of older adults. Based on newly available estimates

from HRS’s Harmonized Cognitive Assessment Protocol

(HCAP), 10% of people age 65 and older in the U.S. had

dementia in 2016.

A3, 160

Underdiagnosis of Alzheimer’s and Other

Dementias in the Primary Care Setting

Prevalence studies such as CHAP and HRS are designed

so that everyone in the study undergoes evaluation for

dementia. But outside of research settings, a substantial

portion of those who would meet the diagnostic criteria

for Alzheimer’s and other dementias are not diagnosed

with dementia by a physician.

252-261

Furthermore, only

about half of Medicare beneficiaries who have a diagnosis

of Alzheimer’s or another dementia in their Medicare

billing records report being told of the diagnosis.

262-266

Because dementia is often underdiagnosed — and if

it is diagnosed by a clinician, some people appear to

be unaware of their diagnosis — a large portion of

Americans with dementia may not know they have it.

267

Some studies indicate that underdiagnosis is higher in

Black and Hispanic older adults.

260, 261, 268

A number of

potential harms may result from a missed or delayed

dementia diagnosis. These include delayed access to

treatment, less time for care planning, higher costs of

care, and negative impact on the individual’s physical or

mental health or even the mental health of their family

members and potential caregivers; more research is

needed to better understand the potential harms of

delayed or lack of diagnosis.

269

Underdiagnosis is most

pronounced at the earliest stages of dementia when

symptoms are mild.

268

Even fewer people living with mild

cognitive impairment (MCI), a precursor to dementia

(see Overview page 10), receive a diagnosis despite this

being a stage where treatment and planning may be most

effective.

270

One recent study estimates that only 8% of

older Americans living with MCI receive a diagnosis.

271

Prevalence of Subjective Cognitive Decline

Subjective cognitive decline refers to an individual’s

perception that their memory or other thinking abilities

are worsening, independent of cognitive testing or a

physician’s diagnosis. Subjective cognitive decline is one

of the earliest warning signs of dementia and may be a

way to identify people who are at high risk of developing

Alzheimer’s or other dementias, as well as MCI.

272-276

Not

all those who experience subjective cognitive decline

go on to develop MCI or dementia, but many do.

277-279

Subjective cognitive decline often prompts medical

attention, and a formal diagnosis can help distinguish

experiences potentially related to higher dementia risk

from experiences less likely to be related, such as other

underlying health conditions.

280

One study showed

those who consistently reported subjective cognitive

decline that they found worrisome were at higher risk for

developing Alzheimer’s dementia.

281

The Behavioral Risk

Factor Surveillance System survey, a large cross-sectional,

telephone-based survey of community-dwelling people

across the U.S. that includes questions on subjective

cognitive decline, found that 10% of Americans age 45

and older reported subjective cognitive decline, but 54%

of those who reported it had not consulted a health care

professional.

282

Individuals concerned about declines in

memory and other cognitive abilities should consult a

health care professional.

Prevalence

*Percentages do not total 100 due to rounding.

Created from data from Rajan et al.

A2, 241

65-74 years:

1.83 million (26.4%)

75-84 years:

2.67 million (38.6%)

85+ years:

2.42 million (35.4%)

Number and Ages of People 65 or Older

with Alzheimer's Dementia, 2024*

Total:

6.9 Million

Figure

Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).24

Prevalence Estimates

The prevalence numbers included in this report are

based on estimates of how many people in the U.S. are

living with Alzheimer’s dementia; that is, the number

of people living with the clinical symptoms described

in the “Dementia Due to Alzheimer’s Disease” (mild,

moderate, or severe) portion of the “Alzheimer’s Disease

Continuum” described on pages 10-11 of the Overview.

The estimate of 6.9 million older adults who have

Alzheimer’s dementia comes from a single longitudinal

study in which participants were systematically evaluated

and then re-evaluated on a regular basis; those who

exhibited the clinical symptoms of Alzheimer’s dementia

were classified as having Alzheimer’s dementia.

A2, 241

A major advantage of this approach is that it attempts to

capture all individuals living with the condition and does

not rely on the diagnosis of people living with Alzheimer’s

by the health care system, a process that has resulted

in a substantial undercount (i.e., “underdiagnosis”) of

the Alzheimer’s population. The disadvantage is that the

longitudinal study is located in a single, small geographic

area and may not be nationally representative (although

the estimation process attempted to account for

the demographics of the entire U.S. population). In

the future, Facts and Figures could report estimates

of Alzheimer’s dementia prevalence from multiple

longitudinal studies or using different symptom-based

diagnostic criteria; these differences in criteria could

result in different prevalence estimates from what we

report here.

A3, 160

Almost all existing Alzheimer’s dementia prevalence

studies are based on the identification of clinical

symptoms to classify an individual as having Alzheimer’s

dementia; they do not rely on the brain changes believed

to be responsible for Alzheimer’s disease across the

continuum of the disease. As data sources, methods and

scientific knowledge improve, estimates of prevalence may

incorporate these brain changes using biomarkers. This

addition could lead to very different prevalence estimates

for a number of reasons, which are discussed below.

Prevalence Estimates of Dementia Due to Alzheimer’s

Disease Based on Biomarkers and Dementia Symptoms

Prevalence estimates of dementia due to Alzheimer’s

disease based on Alzheimer’s brain changes, as well

as overt clinical dementia symptoms, are likely to be

lower than the 6.9 million figure reported here. This

is because autopsy- and biomarker-based studies

21, 79,

243-245

indicate that some individuals counted as having

Alzheimer’s dementia based on symptoms do not have

the biological brain changes defined as Alzheimer’s

disease; that is, their dementia is caused by something

other than Alzheimer’s disease. Both autopsy studies and

clinical trials have found that 15% to 30% of individuals

who meet the criteria for clinical Alzheimer’s dementia

based on symptoms did not have Alzheimer’s-related

brain changes. Thus, these studies indicate that estimates

using biomarkers of Alzheimer’s disease could be up to

30% lower than prevalence estimates based only on

symptoms. This would translate to roughly 4.8 million

Americans age 65 and older being classified as having

dementia due to Alzheimer’s disease in 2024.

A3, 160

Prevalence Estimates of MCI due to Alzheimer’s Disease

Based on Biomarkers and Mild Cognitive Symptoms

For decades it has been recognized that all individuals

with dementia pass through a precursor stage

frequently referred to as mild cognitive impairment

(MCI; see Overview, page 10). With the recent advent

of biomarkers that detect the brain changes believed

to characterize Alzheimer’s disease, it may now be

possible to determine which individuals diagnosed with

MCI have MCI due to Alzheimer’s disease. The number

and proportion of older adults who have MCI due to

Alzheimer’s disease are currently difficult to estimate

because they require studies with both population-based

prevalence measures of MCI and tests of Alzheimer’s

biomarkers, and this line of research is in its infancy.

Furthermore, there is variation across studies in both

the threshold of cognitive impairment required for an

MCI diagnosis and the level of biomarker burden that

defines the presence of Alzheimer’s disease. However,

we can roughly estimate this prevalence indirectly using

multiple data sources. A systematic review of more than

30 studies of all-cause MCI reported that about 17%

of people age 65 and older had MCI.

The HRS HCAP

study more recently estimated the prevalence of MCI in

people age 65 and older to be 22%.

160

Meanwhile, studies

assessing biomarkers for Alzheimer’s disease with PET

scans have reported that about half of people with MCI

have Alzheimer’s-related brain changes.

246, 247

Therefore,

roughly 8% to 11% of the 63 million Americans who

are age 65 and older in 2024 — or approximately

5 to 7 million older Americans — may have MCI due to

Alzheimer’s disease.

248

This broad prevalence estimate

needs to be refined with population-based studies

involving biomarkers and more precise estimates from

narrower age ranges.

Prevalence Estimates of Alzheimer’s Disease

Based on Biomarkers and any Cognitive Symptoms

(MCI or Dementia)

Combining the estimates of the prevalence of dementia

due to Alzheimer’s disease and the prevalence of MCI

due to Alzheimer’s disease provides an estimate of

people living with the brain changes of Alzheimer’s

disease and some form of cognitive impairment. This

estimate would include older adults with the earliest

detectable stages of cognitive impairment who have

the brain changes of Alzheimer’s but may or may not

have the overt symptoms of dementia that interfere

with their ability to carry out everyday activities.

Combining the estimates of roughly 4.8 million

Americans age 65 and older with dementia due to

Alzheimer’s disease based on Alzheimer’s brain changes

and the 5 to 7 million older Americans with MCI due

to Alzheimer’s disease translates to approximately

10 to 12 million older Americans with Alzheimer’s

disease and some form of cognitive impairment in 2024.

Furthermore, because MCI develops years before

dementia onset and can affect individuals younger

than 65, there are likely more than 5 to 7 million

people of any age with MCI due to Alzheimer’s disease,

and thus the 10 to 12 million estimate could be even

higher if we consider Americans of all ages, not just

those 65 or older.

Prevalence Estimates of Alzheimer’s Disease

Across the Entire Cognitive Spectrum

Finally, as measurements of the brain changes of

Alzheimer’s disease become more widely available in

research, we will be able to estimate how many people

have Alzheimer’s disease regardless of the presence

or absence of dementia or any form of cognitive

impairment. The total number of people living with the

brain changes of Alzheimer’s disease is likely to be much

larger than the number with MCI or dementia due to

Alzheimer’s disease given that there is an incipient and

silent (i.e., “preclinical”) stage of Alzheimer’s disease

before the emergence of cognitive symptoms of either

MCI or dementia (see Overview, page 10).

249

While this

is still the subject of ongoing research, estimates are

emerging of the prevalence of preclinical Alzheimer’s

disease in the population.

250, 251

More research is needed

to validate preclinical Alzheimer's and determine how to

measure it with biomarkers that conclusively represent

Alzheimer’s disease, as opposed to other dementia-

Prevalence

causing diseases. We also need to further understand

if this preclinical stage is a valid representation of

people who may go on to develop dementia due to

Alzheimer’s disease. When a conclusive connection is

shown between biomarkers and the preclinical stage,

and when epidemiological studies include biomarker-

based diagnoses, it will be possible to estimate the

number of individuals throughout the entire continuum

of Alzheimer’s disease (i.e., those with biomarker-

confirmed Alzheimer’s dementia, those with biomarker-

confirmed MCI due to Alzheimer’s disease and those with

biomarker-confirmed preclinical Alzheimer’s disease).

The resulting estimated prevalence will be even higher

than any estimates presented in the current report.

Future Facts and Figures Prevalence Estimates

What does all this mean for future prevalence estimates?

Future Facts and Figures reports will continue to include

the estimated prevalence of individuals in the Alzheimer’s

dementia stage, defined according to clinical symptoms,

currently estimated at 6.9 million Americans, in addition

to the best available estimated prevalence of MCI due

to Alzheimer’s disease. Accurate, up-to-date estimates

of the number of people living with these conditions

will remain essential to understanding the demands

on affected families, health systems, social and health

safety nets, and, of course, the people living with these

conditions. When biomarker-based prevalence estimates

become available, Facts and Figures will also report the

estimated prevalence of individuals with any clinical

cognitive impairment and Alzheimer’s disease to reflect

both those in the dementia phase and those in the MCI

phase of Alzheimer’s. Facts and Figures will not include

prevalence estimates of the preclinical Alzheimer’s

disease stage until (1) there is convincing evidence of a

connection between biomarkers in this silent stage

and the development of MCI due to Alzheimer’s disease

and (2) epidemiologic studies have estimated the number

of individuals in this stage. In addition, as the evidence

and epidemiological data warrant, future reports may

also include estimates of the prevalence of dementia

from all causes. It should be noted that both symptom-

based prevalence estimates of Alzheimer’s dementia

and biomarker-based prevalence estimates of

Alzheimer’s disease are expected to increase in the

future due to growth in the population of Americans

age 65 and older, the group most at risk for developing

cognitive symptoms.

26 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

State

Number

(in thousands)

Montana 21 9.8

Nebraska 35.1 11

Nevada 54.9 10.6

New Hampshire 26.5 10.1

New Jersey 185.3 12.3

New Mexico 46 11.8

New York 426.5 12.7

North Carolina 210.5 11.6

North Dakota 13.7 11.1

Ohio 236.2 11.3

Oklahoma 70.5 10.8

Oregon 79.1 10

Pennsylvania 282.1 11.5

Rhode Island 22 11.4

South Carolina 112.5 11.5

South Dakota 16.5 10.5

Tennessee 129.2 10.9

Texas 459.3 11.9

Utah 38.3 10

Vermont 12.8 9.9

Virginia 164 11.7

Washington 126.7 10.2

West Virginia 38.1 10.2

Wisconsin 110.9 10.6

Wyoming 10.3 9.9

Estimated Prevalence (Number and Percentage) of Alzheimer’s Dementia (AD) in the 50 U.S. States

and District of Columbia Among Adults Age 65 Years and Older in 2020

State

Number

(in thousands)

Alabama 103.6 11.8

Alaska 8.4 8.8

Arizona 151.5 11

Arkansas 60.4 11.3

California 719.7 12

Colorado 90.8 10.4

Connecticut 76.8 11.9

Delaware 22.3 11.3

District of Columbia 15.1 16.8

Florida 579.9 12.5

Georgia 188.3 12

Hawaii 31.2 11.3

Idaho 29.9 9.8

Illinois 250.6 12

Indiana 121.3 10.9

Iowa 62.1 11

Kansas 54.5 11.2

Kentucky 80.5 10.4

Louisiana 94.7 12.4

Maine 29.6 10.1

Maryland 127.2 12.9

Massachusetts 135.2 11.3

Michigan 202.8 11.2

Minnesota 101.9 10.7

Mississippi 62.5 12.5

Missouri 122.3 11.2

Created from data from Dhana et al.

283

Table

* Only counties with 10,000 or more residents age 65 or older were included in the ranking.

Created from data from Dhana et al.

283

Prevalence

8.8% - 9.9% 10.0% - 10.9% 11.0% - 11.9% 12.0% - 12.9%

Prevalence of Alzheimer's Disease in the 50 U.S. States, and the 10 Counties with the Highest Prevalence, 2020*

4 Prince George’s County, MD

(16.1%)

5 Hinds County, MS

(15.5%)

6 Orleans Parish, LA

(15.4%)

7 Dougherty County, GA

(15.3%)

1 Miami-Dade County, FL

(16.6%)

2 Baltimore City, MD

(16.6%)

3 Bronx County, NY

(16.6%)

8 Orangeburg County, SC

(15.2%)

9 Imperial County, CA

(15.0%)

10 El Paso County, TX

(15.0%)

Figure

28 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Estimates of the Prevalence of Alzheimer’s

Dementia by State and County

Recently, an analysis was conducted using the same data

sources that generated the national prevalence estimate

in this report that provides estimates of the prevalence

of Alzheimer’s dementia by state and, for the first time,

by county.

283

As shown in Figure 3, states and counties in

the eastern and southeastern U.S. have the highest

prevalence of Alzheimer’s dementia; eight of the

10 counties (with at least 10,000 older adults) with the

highest prevalence are in the East and Southeast. In

these regions, older people and Black and Hispanic

residents — groups that are at higher risk of Alzheimer's

dementia — comprise larger percentages of the

population (see Racial and Ethnic Differences in the

Prevalence of Alzheimer’s and Other Dementias on pages

29-31). Table 4 displays the prevalence (both number

and percentage)of Alzheimer’s dementia for each state.

Understanding these regional differences can help guide

the allocation of resources to public health programs for

Alzheimer’s in the U.S.

Incidence of Alzheimer’s Dementia

While prevalence refers to existing cases of a disease in a

population at a given time, incidence refers to new cases

of a disease that develop in a given period in a defined

population — for example, the number of people who

develop Alzheimer’s dementia during 2024 among U.S.

adults who are age 65 or older. Incidence provides a

measure of risk for developing a disease. According to

estimates using data from the CHAP study and the U.S.

Census Bureau, approximately 910,000 people age 65 or

older developed Alzheimer’s dementia in the U.S. in 2011,

a number that would be expected to be even higher in

2024 if CHAP estimates were available for that year.

284

The rate at which new cases of Alzheimer’s develop

increases dramatically with age: according to estimates

from CHAP, in 2011 the average annual incidence in

people age 65 to 74 was 0.4% (meaning four of every

1,000 people age 65 to 74 developed Alzheimer’s

dementia in 2011); in people age 75 to 84, the annual

incidence was 3.2% (32 of every 1,000 people); and in

people age 85 and older, the incidence was 7.6% (76 of

every 1,000 people).

284

A 2015 study using data from the

Adult Changes in Thought Study, a cohort of members of

a health care delivery system in the Seattle area, reported

similar incidence rates to the CHAP study.

Because of

the increasing number of people age 65 and older in the

U.S., particularly those age 85 and older, the annual

number of new cases of Alzheimer’s and other dementias

is projected to double by 2050.

285

Lifetime Risk of Alzheimer’s Dementia

Lifetime risk is the probability that someone of a given

age who does not have a particular condition will develop

the condition during that person’s remaining life span.

Data through 2009 from the Framingham Heart Study

were used to estimate lifetime risk of Alzheimer’s

dementia by age and sex.

A4, 286

As shown in Figure 4, the

study estimated that the lifetime risk for Alzheimer’s

dementia at age 45 was approximately 1 in 5 (20%) for

women and 1 in 10 (10%) for men. The risks for both

sexes were slightly higher at age 65.

286

Diﬀerences Between Women and Men in

the Prevalence and Risk of Alzheimer’s and

Other Dementias

Almost two-thirds of Americans with Alzheimer’s are

women.

241

Of the 6.9 million people age 65 and

older with Alzheimer’s dementia in the United States,

4.2 million are women and 2.7 million are men.

241

This

represents 11% of women and 9% of men age 65 and

older in the United States.

287

Women live longer than men on average, and older

age is the greatest risk factor for Alzheimer’s.

286, 288, 289

This survival difference contributes to higher prevalence

of Alzheimer’s and other dementias in women compared

with men. However, it is not clear that the risk of

developing Alzheimer’s or other dementias differs

between men and women of the same age. Most studies

of incidence in the United States have found no

meaningful difference between men and women in the

proportion who develop Alzheimer’s or other dementias

Created from data from Chene et al.

286

10.3%

19.5%

45Age 65

11.6%

21.1%

MenPercentage Women

Estimated Lifetime Risk for Alzheimer’s Dementia,

by Sex, at Ages 45 and 65

Figure

at any given age,

10, 86, 289-291

while some European studies

have reported a higher incidence among women at older

ages,

292, 293

or higher incidence among men.

294

Therefore,

differences in the risk of dementia between men and

women may depend in part on age, birth cohort and/or

geographic region.

295, 296

Other studies have provided evidence that any observed

difference in dementia risk between men and women may

be an artifact of who is more or less likely to die of other

health factors before developing dementia. A study using

Framingham Heart Study data suggested that men in the

study appeared to have a lower risk for dementia due to

“survival bias,” in which the men who survived to age 65

or beyond and were included in the study were the ones

with a healthier cardiovascular risk profile (men have a

higher rate of death from cardiovascular disease in middle

age than women) and thus a lower risk for dementia.

288

Recent studies have supported the notion that selection

bias contributes to reports of sex and gender differences

in Alzheimer’s dementia risk.

285, 297

More research is

needed to support this interpretation.

Although differences in the rates at which men and

women develop Alzheimer’s or other dementias do not

appear to be large or consistent, the reasons men and

women develop dementia may vary. These differences

may be based in biology, such as chromosomal or

hormonal differences related to reproductive history

298

(i.e., sex differences), or in how social and cultural factors

are distributed among or are experienced by men and

women (i.e., gender differences), or a combination of the

two.

295, 299, 300

Gender differences may exist in the

distribution of or even the effect of known risk factors for

dementia, such as education, occupation, cardiovascular

disease and health behaviors. For example, lower

educational attainment in women than in men born in the

first half of the 20th century may contribute to elevated

risk in women, as limited formal education is a risk factor

for dementia.

301

This possibility requires more research,

but evidence supports that greater educational

attainment over time in the United States — the gains in

which have been more substantial for women than men

— has led to decreased risk for dementia.

302

In addition to

differences in educational attainment relating to

dementia risk differences in men and women, the same

level of education affect men's and women's dementia risk

differently. European studies have found that the

association of lower educational attainment with

dementia outcomes may be stronger in women than

men.

303, 304

Other societal gender differences may also be at play,

such as differences in occupational attainment between

men and women, with a recent study showing that women

who participated in the paid workforce earlier in life had

better cognitive outcomes after age 60 than women

who were not part of the paid workforce.

297, 305, 306

recently, gender differences during the lockdown phase

in the early part of the COVID-19 pandemic included

increased child care and job loss in sectors where women

were more likely to be employed.

307-309

It is unclear how

these differential impacts on women may affect their

brain health in the future. Researchers have begun

exploring how mental health challenges, lost job

opportunities, and decreased employment earnings

experienced during the pandemic may affect women’s

ability to maintain brain health.

308

It is unclear whether genetic risk operates differently in

women and men in the development of, or susceptibility to,

Alzheimer’s pathology.

310

A number of studies have

indicated that the APOE-e4 genotype, the best known

common genetic risk factor for Alzheimer’s dementia, may

have a stronger association with Alzheimer’s dementia

311, 312

and neurodegeneration

313

in women than in men. However,

a meta-analysis found no difference between men and

women in the association between APOE-e4 and

Alzheimer’s dementia overall, although age played an

interesting interactive role. That is, APOE-e4 was related

to higher Alzheimer’s risk in women than men between

ages 55 and 70, when APOE is thought to exert its largest

effects.

314

It is unclear whether the influence of APOE-e4

may depend on the sex hormone estrogen.

315, 316

It should be recognized that sex and gender identities

cannot be reduced to binary categories. Individuals who

identify with nonbinary sex or gender identities may have

different risks for Alzheimer’s disease (see “Risk for

Alzheimer’s and Other Dementias in Sexual and Gender

Minority Groups” in this section).

Racial and Ethnic Diﬀerences in the Prevalence

and Risk of Alzheimer’s and Other Dementias

The risk of Alzheimer’s and other dementias appears to

vary by race and ethnicity in the U.S. While risk is poorly

characterized in smaller racial and ethnic groups in the

U.S., multiple studies have reported on differences in risk

across non-Hispanic Black, non-Hispanic White, and

Hispanic Americans. In the U.S., non-Hispanic Black and

Hispanic older adults are more likely than White older

adults to have Alzheimer’s or other dementias.

317-323

Data

from the CHAP study indicates 19% of Black and 14%

of Hispanic adults age 65 and older have Alzheimer’s

dementia compared with 10% of White older adults.

241

In line with these observations, most other prevalence

studies indicate that Black older adults are about twice as

likely to have Alzheimer’s or other dementias as White

older adults.

160, 284, 324, 325

Some other studies indicate

Hispanic older adults are about one and one-half times as

likely to have Alzheimer’s or other dementias as White

Prevalence

30 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

older adults,

325-327

though others have shown similar

prevalences among Hispanic older adults and White older

adults.

160

The population of Hispanic people comprises

very diverse groups with different cultural histories and

health profiles, and there is evidence that prevalence may

differ from one specific Hispanic ethnic group to another

(for example, Mexican Americans compared with

Caribbean Americans).

328, 329

The higher prevalence of Alzheimer’s dementia in Black

and Hispanic populations compared with the White

population appears to be due to a higher risk of

developing dementia in these groups compared with the

White population of the same age.

330, 331

Race is a social

construct with little to no genetic or biological basis.

Instead, race is an idea created and used throughout

history by groups in power to justify their control and

dominance over other groups, and genetic factors do not

account for the large differences in prevalence and

incidence among racial groups.

330, 332

While there is some

research into how the influence of genetic risk factors on

Alzheimer’s and other dementias may differ by race —

for example, the influence of the APOE-e4 allele on

Alzheimer’s risk may be stronger for White Americans

than Black Americans

88-92, 333

— these small differences in

genetic influence do not account for the large differences

in dementia risk across racial groups. Instead, research

suggests that the historic and continued marginalization

of Black and Hispanic people in the U.S. has produced

disparities between older Black and Hispanic populations

and older White populations in life experiences,

socioeconomic indicators and, ultimately, health

conditions. It is these disparities that most likely explain

the difference in risk for Alzheimer’s and other dementias

among racial and ethnic groups.

334

These health and

socioeconomic disparities are rooted in the history of

discrimination against Black individuals and other people

of color in the U.S., not only during interpersonal

interactions, but also as codified in the rules, practices

and policies of U.S. banks, laws, health care and other

systems — that is, structural racism.

335, 336

Structural

racism pervades many aspects of life that may directly or

indirectly alter dementia risk, including where people can

live, the quality of schools in their communities, exposure

to harmful toxicants and pollutants, access to quality

health care, employment prospects, occupational safety,

the ability to pass wealth to subsequent generations,

treatment by the legal system and exposure to

violence.

337-340

The cumulative stress imparted by the effects of

structural racism and the resulting differences in social

and physical environments may directly influence

dementia risk among historically marginalized and socially

disadvantaged racial and ethnic groups. Further, structural

racism leads to disparities by race and ethnicity in a wide

range of health outcomes including increased risk for

chronic conditions that are themselves associated with

higher dementia risk, such as cardiovascular disease and

diabetes. These health conditions, which disproportionately

affect Black and Hispanic populations, are believed to

explain much of the elevated risk of dementia among Black

and Hispanic populations.

88, 334, 341, 342

Many studies suggest

that racial and ethnic differences in dementia risk do not

persist in rigorous analyses that account for health and

socioeconomic factors.

156, 330, 343

The influence of structural racism on health and dementia

risk may cascade and compound across the course of a

person’s life. For example, some studies indicate that early

life experiences with residential and school segregation can

have detrimental effects on the cognitive health of Black

Americans in later life.

337-339

This points to a need for health

disparities researchers to employ a life course perspective

and to seek the insights of race equity scholars to account

for the cumulative interplay of many environmental and

sociopolitical factors that may put some groups of people

at increased risk for Alzheimer’s and other dementias.

334, 342

Many of the social processes that influence disparities in

the development of Alzheimer’s could also influence

whether and when a diagnosis of dementia occurs. There

is evidence that missed or delayed diagnoses of Alzheimer’s

and other dementias are more common among Black

and Hispanic older adults than among White older

adults.

254, 256, 259, 344, 345

Based on data from Medicare

beneficiaries age 65 and older, it has been estimated that

Alzheimer’s or another dementia has been diagnosed in

10.3% of White older adults, 12.2% of Hispanic older

adults and 13.8% of Black older adults.

346

Although these

percentages indicate that the dementia burden is greater

among Black and Hispanic older adults than among White

older adults, the percentages should be even higher according

to prevalence studies that detect all people who have

dementia irrespective of their use of health care systems.

Population-based cohort studies regarding the prevalence

and incidence of Alzheimer’s and other dementias in racial

and ethnic groups other than White, Black and Hispanic

populations are relatively sparse.

331

Among the few studies,

one examined electronic medical records of members of a

large health plan in California. Its findings indicated that

dementia incidence — determined by the first presence of

a dementia diagnosis in members’ medical records — was

highest among African American older adults (the term

used in the study for those who self-reported as Black or

African-American); intermediate for Latino older adults

(the term used in the study for those who self-reported as

Latino or Hispanic), American Indian and Native Alaskan

older adults, Pacific Islander older adults and White

older adults; and lowest among Asian American older

adults.

347

A follow-up study with the same cohort showed

differences across Asian American subgroups, but all

31Prevalence

subgroups studied had lower dementia incidence than the

White population.

348

A systematic review of the literature

found that Japanese Americans were the only Asian

American subgroup with reliable prevalence data, and that

they had the lowest prevalence of dementia compared with

all other ethnic groups.

328

We have limited understanding of

Alzheimer’s disease as experienced by people of Middle

Eastern and North African descent,

349

those who identify

with more than one race or ethnicity, and subgroups of origin

within racial or ethnic groups.

346

More studies, especially

those involving community-based cohorts and those that

focus on racial/ethnic groups historically not included in

Alzheimer’s research, are necessary to draw conclusions

about the prevalence of Alzheimer’s and other dementias in

different racial and ethnic groups and subgroups.

Risk for Alzheimer’s and Other Dementias

in Sexual and Gender Minority Groups

There are other groups with shared social identities

and characteristics that may experience different risks

of Alzheimer’s and other dementias. This includes

members of sexual and gender minority (SGM) groups.

SGM refers to individuals who identify as lesbian, gay,

bisexual (sexual minorities), and/or transgender or

gender nonbinary, as well as people with a gender

identity, gender expression or reproductive

development that varies from traditional, societal,

cultural or physiological norms (gender minorities).

SGM older adults may face an increased dementia

risk, through pervasive exposure to systematic

discrimination, marginalization, disadvantage and/or

exclusion from social organizations and enterprises.

Those enterprises include Alzheimer's research, and,

until recently, little has been known about the dementia

risks of people who self-identify as SGM. Although few

studies have been designed to investigate whether SGM

older adults are at greater risk for dementia than

non-SGM older adults, a growing body of preliminary

evidence suggests that this may be the case. In a study

of adults living in any of 25 U.S. states, SGM older adults

reported experiencing more cognitive problems than

non-SGM older adults.

350

Two population-based studies

found higher rates of cognitive impairment among SGM

older adults than among non-SGM older adults,

351, 352

yet a third study reported that the risks for dementia

and mild cognitive impairment were similar for people in

same-sex relationships and people in another-sex

relationships.

353

Two studies found indications of

potentially elevated dementia risk among transgender

adults. One study of Medicare beneficiaries estimated

that dementia was present among 18% of transgender

adults age 65 years and older, compared with 12%

among cisgender (not transgender) adults.

354

A second

study of adults in Florida reported that transgender

adults were more likely than cisgender adults to have a

diagnosis of Alzheimer’s and other dementias in their

electronic medical records.

355

A recent review of the evidence

found that most studies examining subjective cognitive

decline as an outcome showed higher prevalence among

SGM older adults, while those examining objective

measures of cognitive performance showed more

mixed results.

356

More research is necessary to establish whether

SGM older adults face elevated dementia risk and if

so, to understand reasons for it. Researchers have

hypothesized that stressors experienced by SGM older

adults, such as discrimination and marginalization, may

elevate their risk for Alzheimer’s and other

dementias.

300

These stressors could take a toll on the

physical and mental health of SGM older adults.

357

One study showed that SGM older adults who were

experiencing depression were more likely to report

subjective cognitive decline than SGM older adults

without depression.

358

SGM older adults experience

disparities in other health-related factors that elevate

the risk of Alzheimer’s and other dementias, including

higher rates of alcohol and tobacco use, obesity and

other cardiovascular risk factors compared with

non-SGM older adults. SGM older adults also have

lower rates of health care access and preventive health

screenings, in part due to experiencing barriers such as

discrimination and heterosexist attitudes in health care

settings.

359

Finally, the history of HIV/AIDS and its

burden of illness, mortality and social stigma has been

tied to the SGM population, particularly gay and bisexual

men and transgender people. HIV/AIDS is now a chronic

condition that can be managed successfully with

medication, and many people with HIV/AIDS survive into

older ages. In addition to any effects of this history on

aforementioned social stressors and health care access,

HIV/AIDS itself is a risk factor for dementia.

360

The

elevated prevalence of HIV/AIDS in gay and bisexual men

and transgender people puts them at higher risk for

dementia due to HIV/AIDS than non-SGM older adults.

There is increasing recognition that historically

marginalized groups — whether defined by gender,

sexual orientation, race, ethnicity or other traits — are

not monolithic when it comes to their identities and

experiences. These identities and experiences intersect,

and belonging to more than one of these groups may be

particularly consequential for health, including dementia

risk. For example, a recent study showed that

This report keeps the racial, ethnic and other

population identiﬁers used in source documents

when describing ﬁndings from speciﬁc studies.

32 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

transgender adults from minoritized ethnoracial groups

are more likely to report subjective cognitive decline

than other transgender adults.

361

This “intersectionality”

framework is important for developing more informative

dementia research and more effective and compassionate

dementia care in these communities.

362

It is important

that research and care efforts consider how systems of

oppression based on gender, race, ethnicity, class,

sexual orientation and HIV status may intersect and

influence dementia.

363, 364

Trends Over Time in the Prevalence and

Incidence of Alzheimer’s Dementia

A growing number of studies indicate that the

prevalence (i.e., proportion)

239, 259, 290, 345-349, 365-367

and

incidence

294, 365-374

of Alzheimer’s and other dementias

in the U.S. and other high income countries may have

declined in the past 25 years,

294, 302, 365-373, 375-379

though

results are mixed.

70, 284, 380, 381

One recent systematic

review found that incidence of dementia has decreased

worldwide over the last four decades while incidence of

Alzheimer’s dementia, specifically, has held steady, but

more research on this distinction is needed, especially in

low-income and middle-income countries.

382

Declines in

dementia risk have been attributed to increasing levels

of education and improved control of cardiovascular

risk factors.

302, 368, 371, 375, 383, 384

Such findings are

promising and suggest that identifying and reducing

risk factors for dementia may be effective — whether

interventions occur person by person (such as obtaining

treatment for one’s blood pressure) or are integrated

into the fabric of communities (such as changes in

education policies). Although these findings indicate

that a person’s risk of dementia at any given age may

be decreasing slightly, the total number of people with

Alzheimer’s or other dementias in the U.S. and other

high-income countries is expected to continue to

increase dramatically because of the increase in the

number of people at the oldest ages.

It is unclear whether these encouraging declines

in incidence will continue. For example, worldwide

increases in diabetes and obesity, which are risk

factors for dementia, among people younger than

65 may lead to a rebound in dementia risk in coming

years.

366, 385-388

It is also not clear that the encouraging

trends pertain to all racial and ethnic groups.

284, 323, 383,

384, 389, 390

Thus, while recent findings are promising, the

social and economic burden of Alzheimer’s and other

dementias will continue to grow. Moreover, 68% of

the projected increase in the global prevalence and

burden of dementia by 2050 will take place in low- and

middle-income countries, where current evidence

does not support a decline in the risk of Alzheimer’s

and other dementias.

391

Finally, it is not known how

Created from data from Rajan et al.

A5,241

2020Year 2030 2040 2050 2060

Ages 65-74 Ages 75-84 Ages 85+

Millions of people

6.1

8.5

11.2

12.7

13.8

Projected Number of People Age 65 and Older (Total and by Age) in the U.S. Population

with Alzheimer’s Dementia, 2020 to 2060

Figure

COVID-19 will influence the prevalence and incidence

of Alzheimer’s dementia. For example, the neurologic

effects of COVID-19

392

and the pandemic’s disruptions

to general and brain-related health care may increase

the incidence of Alzheimer’s and other dementias.

Some researchers have surmised that factors such

as social isolation from lockdowns, no-visitor policies

in long-term care facilities, and increased intensive

hospitalizations may increase dementia risk at the

population level, but research in coming years will be

necessary to confirm this and examine whether the

impact is time-limited or long term. On the other

hand, the number of people living with Alzheimer’s

dementia could be influenced in the opposite direction

by increased mortality due to COVID-19 and other

causes of death during the pandemic in 2020–2023,

which may have resulted in death prior to the onset of

Alzheimer’s dementia, or death with fewer years lived

with Alzheimer’s dementia.

393

Looking to the Future

Continued Population Aging

In 2011, the largest ever demographic generation of

the American population — the baby-boom generation

— started reaching age 65. By 2030, the segment of

the U.S. population age 65 and older will have grown

substantially, and the projected 71 million older

Americans will make up over 20% of the total population

(up from 17% in 2022).

237

Additionally, the size of the

older adult population is expected to continue to

increase relative to the population age 64 and younger

— a shift known as population aging — due to a

projected decline in fertility, as well as to mortality

improvements at older ages. Fertility, the average

number of children per woman, has decreased since

1960 in the United States.

394

With fewer babies born

each year, older adults will make up a larger proportion

of the population. Because increasing age is the

predominant risk factor for Alzheimer’s dementia, as the

number and proportion of older Americans grows

rapidly, so too will the numbers of new and existing cases

of Alzheimer’s dementia, as shown in Figure 5, page 32.

A5, 241

By 2060, the number of people age 65 and older with

Alzheimer’s dementia is projected to reach 13.8 million,

barring the development of medical breakthroughs to

prevent or cure Alzheimer’s disease.

A5, 241

Growth of the Age 85 and Older Population

The number of Americans in their 80s, 90s and beyond

is expected to grow dramatically due to population

aging.

237

This will lead to an increase in the number and

percentage of Americans 85 and older. This age group

is expected to comprise 11% of the population age 65

and older in 2025 and 21% of the population age 65

and older in 2050.

395

This will result in an additional

10 million people age 85 and older — individuals at the

highest risk for developing Alzheimer’s dementia.

395

• In 2024, about 2.4 million people living with Alzheimer’s

dementia are expected to be age 85 or older,

accounting for 34% of all people with Alzheimer’s

dementia.

241

• By 2060, 6.7 million people age 85 and older are

expected to have Alzheimer’s dementia, accounting

for about half (48%) of all people 65 and older with

Alzheimer’s dementia.

241

Increased Diversity of Older Adults

The group of older adults who will be at risk for

Alzheimer’s in the coming years will be socially,

culturally and economically different from previous

groups of older U.S. adults. For example, between 2018

and 2040, projections for older adults show increases

in the American Indian population of 75%, in the Black

population of 88%, in the Asian population of 113% and

in the Hispanic population of 175% compared with an

increase of 32% in the White population.

396

In addition, in the coming decades women age 65 and

older will be among the first generations of women

to have widely worked outside the home, and they will

have more years of formal education than previous

generations of women.

397

In parallel these generations

of women came of age during a decrease in the birth

rate, resulting in smaller family size.

398

Whether and

how these social and economic experiences influence

women’s risk of and resilience to Alzheimer’s will

become clearer in the decades ahead.

Since the 1970s, the gap in income in the U.S. between

lower-income, middle-income, and upper-income

households has been widening.

399

This means that the

many people who are age 65 and over experienced

their adulthood during this trend, which may have

influenced health and health behaviors prior to age 65.

In older adulthood, income inequality may influence a

wealth gap, which may have implications for health care,

health behaviors, and social determinants of health that

influence Alzheimer’s risk in particular among low-

income households.

Given the different life experiences of future older adult

populations, it is unclear what the accompanying changes

will be to dementia incidence and prevalence, both at the

population level and within racial/ethnic, socioeconomic,

and sex and gender groups. A birth cohort perspective,

which considers how a certain group of people has passed

through different stages of life in particular years, will be

increasingly important for understanding factors of risk

and resilience that may be unique to the groups of people

at risk for dementia in the coming decades.

400-402

Prevalence 33

Mortality and Morbidity

Among people age 70, 61% of

those with Alzheimer’s dementia

are expected to die before age 80

compared with 30% of people

without Alzheimer’s dementia.

Alzheimer’s disease was the ﬁfth-leading

cause of death among individuals age 65 and

older in 2021.

403

Alzheimer’s disease may

cause even more deaths than oﬃcial sources

recognize. It is also a leading cause of disability

and poor health (morbidity) in older adults.

405

Before a person with Alzheimer’s dies, they

are likely to live through years of morbidity

as the disease progresses.

Alzheimer’s disease was oﬃcially listed as the sixth-leading

cause of death in the United States in 2019;

403

in the years

2020 and 2021, when COVID-19 became the third-leading

cause of death, Alzheimer’s disease was the seventh-leading

cause of death. Oﬃcial counts for more recent years are still

being compiled.

404

Deaths from Alzheimer’s Disease

The data presented in this section are through 2021, the

latest year for which finalized death data are available.

Starting in 2020, the COVID-19 pandemic had a dramatic

effect on deaths in the United States (see the box “The

Effect of the COVID-19 Pandemic on Deaths from

Alzheimer’s Disease” for a discussion of the effect of the

pandemic on Alzheimer’s mortality). In 2021, Alzheimer’s

mortality trends started to more closely resemble the

year-by-year trends from before the COVID-19 pandemic.

In this section, “deaths from Alzheimer’s disease” refers to

what is officially reported on death certificates. Note that

while death certificates use the term “Alzheimer’s disease,”

the determination is made based on clinical symptoms

in almost every case, and thus more closely aligns with

“Alzheimer’s dementia” as we have defined it in previous

sections of this report; to remain consistent with the

CDC terminology for causes of death, we use the term

“Alzheimer’s disease” for this section when referring to

officially reported statistics gleaned from death certificates.

It is difficult to determine how many deaths are caused by

Alzheimer’s disease each year because of the way causes

of death are recorded. According to data from the Centers

for Disease Control and Prevention (CDC), 119,399

people died from Alzheimer’s disease in 2021.

403

The CDC

considers a person to have died from Alzheimer’s if the

death certificate lists Alzheimer’s as the underlying cause

of death, defined as “the disease or injury which initiated

the train of events leading directly to death.”

406

The number of deaths from dementia of any type is

much higher than the number of reported Alzheimer’s

deaths. In 2021, some form of dementia was the

officially recorded underlying cause of death for 279,704

individuals (this includes the 119,399 from Alzheimer’s

disease).

403

Therefore, the number of deaths from all

causes of dementia, even as listed on death certificates,

is more than twice as high as the number of reported

Alzheimer’s deaths alone.

Severe dementia frequently causes complications such

as immobility, swallowing disorders and malnutrition that

significantly increase the risk of acute conditions that can

cause death. One such condition is pneumonia (infection

of the lungs), which is the most commonly identified

immediate cause of death among older adults with

Alzheimer’s or other dementias.

407-410

One pre-COVID-19

autopsy study found that respiratory system diseases

were the immediate cause of death in more than half of

people with Alzheimer’s dementia, followed by circulatory

system disease in about a quarter.

408

Death certificates

for individuals with Alzheimer’s often list acute conditions

such as pneumonia as the primary cause of death rather

than Alzheimer’s.

408, 409

As a result, people with Alzheimer’s

dementia who die due to these acute conditions may not

be counted among the number of people who die from

Alzheimer’s disease, even though Alzheimer’s disease may

well have caused the acute condition listed on the death

certificate. This difficulty in using death certificates to

determine the number of deaths from Alzheimer’s and other

dementias has been referred to as a “blurred distinction

between death with dementia and death from dementia.”

411

Another way to determine the number of deaths from

Alzheimer’s dementia is through calculations that

compare the estimated risk of death in those who

have Alzheimer’s dementia with the estimated risk of

death in those who do not have Alzheimer’s dementia.

A study using data from the Rush Memory and Aging

Project and the Religious Orders Study estimated that

500,000 deaths among people age 75 and older in the

United States in 2010 could be attributed to Alzheimer’s

dementia (estimates for people age 65 to 74 were not

available), meaning that those deaths would not be

Mortality and Morbidity 35

36 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

The Eﬀect of the COVID-19 Pandemic on Deaths from Alzheimer’s Disease

In 2020 and 2021, COVID-19 was the third-leading cause of

death in the United States, pushing Alzheimer’s disease from

the sixth- to the seventh-leading cause of death.

404

Data for

more recent years were still being compiled as of the time this

report was written. Despite the change in rankings on the list

of causes of death, the total number of deaths from Alzheimer’s

disease recorded on death certificates increased 10.5% between

2019 and 2020 to 134,242.

403

COVID-19 was likely a significant

contributor to the large increase in deaths from Alzheimer’s.

Data from the Centers for Disease Control and Prevention

(CDC) show that excess mortality (the difference between the

observed number of deaths and the expected number of deaths

during a given period) from any cause has been very high during

the height of the pandemic, especially among older adults.

416

Many of these excess deaths were in vulnerable older adults

with Alzheimer’s disease and other dementias. Among Medicare

beneficiaries age 65 and over with Alzheimer’s disease and other

dementias, overall mortality increased 26% between 2019 and

2020, which is twice as high as the increase among beneficiaries

without Alzheimer’s disease and other dementias.

417

Furthermore,

increased mortality between 2019 and 2020 among Medicare

beneficiaries with Alzheimer’s disease and related dementia

was greater among Black, Hispanic and Asian beneficiaries than

among White beneficiaries and the nursing home population.

417

As shown in Figure 6, compared with the average annual number

of deaths in the five years before 2020, there were 13,925 more

deaths from Alzheimer’s disease and 44,729 more deaths from

all dementias, including Alzheimer’s, in 2020. This is, respectively,

12% and 17% more than expected.

403

In 2021, there were 1,082

more deaths from Alzheimer’s disease and 20,449 more deaths

from all dementias compared with the average of the five years

before 2020.

403

The number of people dying from Alzheimer’s

has been increasing over the last two decades, but the number

of excess deaths from Alzheimer’s disease in 2020 far exceeded

what would have been expected from this pre-pandemic trend.

The number for 2021, by contrast, is closer to the pre-pandemic

trend. Data for more recent years are still being compiled, but one

study found that deaths due to all dementias, including Alzheimer’s,

decreased between March 2021 and February 2022, in particular

among residents of nursing homes and long-term care facilities.

418

The impact of COVID-19 can also be seen when examining the

number of deaths from COVID-19 for which death certificates

also listed Alzheimer’s or another dementia as a cause of death

(referred to as a “multiple cause of death”). In 2020 and 2021,

1 in every 10 death certificates listing COVID-19 as the primary

cause of death also listed Alzheimer’s disease or another dementia

as a multiple cause of death. Among people age 85 or older who

died of COVID-19 in 2020 or 2021, Alzheimer’s disease or

another dementia was listed as a multiple cause of death on

almost a quarter of death certificates.

404

The COVID-19 pandemic had a dramatic effect on mortality

from Alzheimer’s and other dementias. Nursing homes and other

long-term care facilities were the site of major outbreaks in the

early stages of the pandemic, and residents with Alzheimer’s

and other dementias were particularly vulnerable. What remains

unclear is whether and how this will affect the longer-term trend

in deaths from Alzheimer’s now that the COVID-19 pandemic has

subsided. As the pandemic has progressed and COVID-19 is no

longer as fatal for most people, the question of “dying with” or

“dying from” COVID-19 is getting harder to parse. In many ways

this echoes the discussion about dying with or from Alzheimer’s

disease discussed in this section. What is clear is that for at least

the first years of the pandemic, having Alzheimer’s or another

dementia made older adults more vulnerable to COVID-19 and

increased the risk of dying from COVID-19.

2015-2019 Average 2020 2021

Deaths

*Data for 2021 are as of February 7, 2022.

Created from data from the National Center for Health Statistics.

416

8,000

6,000

4,000

2,000

Month

Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov

Dec

Deaths Due to Alzheimer’s and Other Dementias in the United States in 2020 and 2021 Compared with Previous Years*

Figure

expected to occur in that year if the individuals did not

have Alzheimer’s dementia.

407

A more recent study using

data from the nationally representative Health and

Retirement Study (HRS) estimated that about 14% of

deaths among Americans age 70 and older from 2000-

2009 were attributable to dementia, while only 5% of

death certificates listed dementia as the underlying cause

of death for this age group, indicating underreporting

on death certificates.

412

According to 2019 Medicare

claims data, about one-third of all Medicare beneficiaries

who die in a given year have been diagnosed with

Alzheimer’s or another dementia.

413

Based on data from

the Chicago Health and Aging Project (CHAP) study, in

2020 an estimated 700,000 people age 65 and older in

the United States had Alzheimer’s dementia at death.

414

Although some undoubtedly died from causes other than

Alzheimer’s, it is likely that many died from Alzheimer’s

disease itself or from conditions for which Alzheimer’s

was a contributing cause, such as pneumonia. Thus,

taken together, the specific number of deaths caused by

Alzheimer’s is unknown.

Adding further complexity, the vast majority of death

certificates listing Alzheimer’s disease as an underlying

cause of death are not verified by autopsy, and research

has shown that 15% to 30% of those diagnosed with

Alzheimer’s dementia during life do not have the brain

changes of Alzheimer's disease but instead have the

Mortality and Morbidity

Created from data from the National Center for Health Statistics.

403,419

1.2%

Percentage

160

140

120

100

-20

-40

-60

-80

Breast

cancer

Cause

of death

Prostate

cancer

Heart

disease

Stroke HIV Alzheimer’s

disease

140.9%

-65.6%

-2.8%

-2.1%

4.8%

Percentage Changes in Selected Causes of Death (All Ages) Between 2000 and 2021

This report keeps the racial, ethnic and other

population identiﬁers used in source documents

when describing ﬁndings from speciﬁc studies.

Figure

38 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Number of Deaths and Annual Mortality Rate (per 100,000 People) Due to Alzheimer’s Disease by State, 2021

Created from data from the National Center for Health Statistics.

A6,403

State

Number

of Deaths

Mortality

Rate

Alabama 2,725 54.1

Alaska 135 18.4

Arizona 2,754 37.8

Arkansas 1,559 51.5

California 16,911 43.1

Colorado 1,778 30.6

Connecticut 1,049 29.1

Delaware 381 38.0

District of Columbia 66 9.9

Florida 6,716 30.8

Georgia 4,378 40.5

Hawaii 562 39.0

Idaho 789 41.5

Illinois 4,025 31.8

Indiana 2,238 32.9

Iowa 1,185 37.1

Kansas 805 27.4

Kentucky 1,632 36.2

Louisiana 2,121 45.9

Maine 539 39.3

Maryland 1,129 18.3

Massachusetts 1,558 22.3

Michigan 4,198 41.8

Minnesota 2,251 39.4

Mississippi 1,694 57.4

Missouri 2,517 40.8

State

Number

of Deaths

Mortality

Rate

Montana 341 30.9

Nebraska 687 35.0

Nevada 804 25.6

New Hampshire 422 30.4

New Jersey 2,399 25.9

New Mexico 634 30.0

New York 3,582 18.1

North Carolina 4,260 40.4

North Dakota 325 41.9

Ohio 4,947 42.0

Oklahoma 1,580 39.6

Oregon 2,047 48.2

Pennsylvania 4,109 31.7

Rhode Island 445 40.6

South Carolina 2,419 46.6

South Dakota 396 44.2

Tennessee 2,879 41.3

Texas 10,437 35.3

Utah 998 29.9

Vermont 337 52.2

Virginia 2,582 29.9

Washington 3,644 47.1

West Virginia 851 47.7

Wisconsin 2,371 40.2

Wyoming 208 35.9

Total 119,399 36.0

Table

brain changes of another cause of dementia (see Table 1,

pages 6-7).

21, 79, 243-245

Therefore, an underlying cause of

death listed as Alzheimer’s disease may not be accurate.

Irrespective of the cause of death, among people age 70,

61% of those with Alzheimer’s dementia are expected to

die before age 80 compared with 30% of people without

Alzheimer’s dementia.

415

Public Health Impact of Deaths from

Alzheimer’s Disease

In the past two decades, although the number of

deaths from other major causes decreased significantly

or remained approximately the same, official records

indicate that deaths from Alzheimer’s disease increased

significantly. Between 2000 and 2021, the number of

deaths from Alzheimer’s disease as recorded on death

certificates more than doubled, increasing 141%, while

deaths from the number-one cause of death (heart

disease) decreased 2.1% (Figure 7).

403, 419

The increase

in the number of death certificates listing Alzheimer’s

as the underlying cause of death probably reflects two

trends: first, Alzheimer’s has become a more common

cause of death as the population ages; and second, over

time, physicians, coroners and others who assign causes

of death may be increasingly likely to report Alzheimer’s

on death certificates.

420

State-by-State Deaths from Alzheimer’s

Table 5 provides information on the number of deaths

due to Alzheimer’s by state in 2021, the most recent

year for which state-by-state data are available. This

information was obtained from death certificates and

reflects the condition identified by the physician or other

medical personnel who filled out the death certificate as

the underlying cause of death. The table also provides

annual mortality rates by state, computed with the death

certificate data, to compare the risk of death due to

Alzheimer’s disease across states with varying population

sizes. For the United States as a whole, in 2021, the

mortality rate for Alzheimer’s disease was 36 deaths per

100,000 people.

A6, 403

Alzheimer’s Death Rates

As shown in Figure 8, the annual rate of deaths due to

Alzheimer’s — that is, the number of Alzheimer’s deaths

per 100,000 people in the population — has risen

substantially since 2000.

403

Table 6 shows that the

annual rate of death from Alzheimer’s increases

dramatically with age, especially after age 65.

A6, 403

The

increase in the Alzheimer’s death rate over time has

disproportionately affected people age 85 and older.

419

Between 2000 and 2021, the death rate from

Alzheimer’s increased 41% for people age 65 to 74,

54% for people age 75 to 84 and 86% for people age 85

Mortality and Morbidity

Created from data from the National Center for Health Statistics.

403

U.S. Annual Alzheimer’s Death Rate (per 100,000 People) by Year

Rate

17.6

20.5

22.5

24.3

27.1

27.0

26.6

29.3

40.7

36.0

37.3

35.9

2000 2002 2004 2006 2008 2010 2012 2014 2018 2020 20212016Year

Figure

and older.

403

A report by the CDC determined that even

after adjusting for changes over time in the specific ages

of people within these age groups, the annual Alzheimer’s

death rate in the U.S. increased substantially between

1999 and 2014.

420

Therefore, the advancing average age

of the older adult population in the U.S. is not the only

explanation for the increase in Alzheimer’s death rates.

Other possible reasons include fewer deaths from other

common causes of death in old age such as heart disease

and stroke; increased clinical recognition of and formal

diagnosis of Alzheimer’s dementia; and increased

reporting of Alzheimer’s as a cause of death by physicians

and others who complete death certificates.

420

Duration of Illness from Diagnosis to Death

and Time Spent in Nursing Home

Studies indicate that people age 65 and older survive

an average of four to eight years after a diagnosis of

Alzheimer’s dementia, yet some live as long as 20 years

with Alzheimer’s dementia.

10-18

This reflects the slow,

insidious and uncertain progression of Alzheimer’s. A

person who lives from age 70 to age 80 with Alzheimer’s

dementia will spend an average of 40% of this time in the

severe stage.

415

Much of this time will be spent in a nursing

home (see Use and Costs section, page 70). At age 80,

approximately 75% of people with Alzheimer’s dementia

live in a nursing home compared with only 4% of the

general population age 80.

415

In all, an estimated

two-thirds of those who die of dementia do so in

nursing homes, compared with 20% of people with cancer

and 28% of people dying from all other conditions.

421

The Burden of Alzheimer’s Disease

The long duration of illness before death contributes

significantly to the public health impact of Alzheimer’s

disease because much of that time is spent in a state of

severe disability and dependence. Scientists have developed

measures that compare the burden of different diseases on

a population in a way that takes into account not only the

number of people with the condition, but also the number

of years of life lost due to that disease and the number of

healthy years of life lost by virtue of being in a state

of disability. One measure of disease burden is called

disability-adjusted life years (DALYs), which is the sum of

the number of years of life lost (YLLs) due to premature

mortality and the number of years lived with disability

(YLDs), totaled across all those with the disease or injury.

These measures indicate that Alzheimer’s is a very

burdensome disease, not only to the individuals with the

disease, but also to their families, informal caregivers and

communities at large. In recent years, the burden of

Alzheimer’s has increased more dramatically in the United

States than the burden of other diseases. According to the

most recent Global Burden of Disease classification system,

Alzheimer’s disease rose from the 12th most burdensome

disease or injury in the United States in 1990 to the sixth

in 2016 in terms of DALYs.

405

In 2016, Alzheimer’s disease

was the fourth highest disease or injury in terms of YLLs

and the 19th in terms of YLDs.

405

These estimates should be interpreted with consideration

of the comparability of data across time and

422

and how

disability is incorporated. These Alzheimer’s burden

estimates use different sources for each state in a given

Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).40

Created from data from the National Center for Health Statistics.

403

U.S. Annual Alzheimer’s Death Rates (per 100,000 People) by Age and Year

Age 2000 2002 2004 2006 2008 2010 2012 2014 2016 2018 2020 2021

45-54 0.2 0.1 0.2 0.2 0.2 0.3 0.2 0.2 0.2 0.3 0.2 0.3

55-64 2.0 1.9 1.8 2.1 2.2 2.1 2.2 2.1 2.7 2.9 3.3 3.2

65-74 18.7 19.6 19.5 19.9 21.1 19.8 17.9 19.6 23.6 24.7 28.6 26.4

75-84 139.6 157.7 168.5 175.0 192.5 184.5 175.4 185.6 214.1 213.9 229.3 214.3

85+ 667.7 790.9 875.3 923.4 1,002.2 987.1 936.1 1,006.8 1,216.9 1,225.3 1,287.3 1,243.6

Table

year, and data sources for states may differ over the years.

Estimates do not account for the context in which

disability is experienced, including social support and

economic resources,

423

which vary widely. Estimates may

not fully account for variation in disability levels between

individuals and along the stages of Alzheimer’s dementia.

These variations in data sources and consideration of

disability may limit the value of these metrics and the

comparability of estimates across states and across years.

Looking to the Future

Taken together, these statistics indicate that not only is

Alzheimer’s disease responsible for the deaths of more and

more Americans, but also that Alzheimer’s and other

dementias are contributing to more and more cases of poor

health and disability in the U.S. With population aging, the

percentage of deaths related to Alzheimer’s and other

dementias will likely continue to increase. The health and

well-being of people with Alzheimer’s and other dementias

should continue to be prioritized. Thus, it will remain

important to develop a comprehensive understanding of

how Alzheimer’s and other dementias contribute to poor

health, disability and mortality. That understanding requires

innovation in research methods that are more inclusive and

that fully capture the lived experience of disability of people

living with dementia and of their families and caregivers.

Mortality and Morbidity 41

Caregiving

More than  million Americans

provide unpaid care for a family

member or friend with dementia,

a contribution to the nation

valued at nearly $ billion

When supporting a person living with

Alzheimer’s dementia, caregiving often includes

assistance with one or more activities of daily

living (ADLs), such as bathing and dressing, as

well as multiple instrumental activities of daily

living (IADLs), such as paying bills, shopping and

using transportation.

424, 425

Caregivers also

provide emotional support to people with

Alzheimer’s dementia, help them manage health

conditions, and communicate and coordinate

care with other family members and health care

providers (see Table 7). In addition to providing

descriptive information about caregivers of

people with Alzheimer’s or other dementias,

this section characterizes caregivers of people

with dementia in comparison with either

caregivers of people with other medical

conditions or, if that comparison is not available,

with people who are not caregivers (referred to

here as non-caregivers).

Unpaid Caregivers

Eighty-three percent of the help provided to older adults

in the United States comes from family members, friends

or other unpaid caregivers.

426

Nearly half of all caregivers

(48%) who provide help to older adults do so for someone

with Alzheimer’s or another dementia.

427

More than

11 million Americans provide unpaid care for people with

Alzheimer's or other dementias.

Table 8 provides details

about unpaid caregivers.

In 2023, caregivers of people with Alzheimer’s or other

dementias provided an estimated 18.4 billion hours

informal — that is, unpaid — assistance, a contribution

valued at $346.6 billion.

This is approximately 57% of the

net value of Walmart’s total revenue in fiscal year 2023

($611.3 billion)

428

and nearly 15 times the total revenue of

McDonald’s in 2022 ($23.3 billion).

429

The total lifetime cost

of care for someone with dementia was estimated at almost

$400,000 in 2023 dollars. Seventy percent of this lifetime

cost of care is borne by family caregivers in the forms of

unpaid caregiving and out-of-pocket expenses for items

ranging from medications to food for the person with

Caregiving refers to attending to another

person’s health needs and well-being.

dementia. Remaining costs encompass payments by

Medicare and Medicaid (see the Use and Costs of Health Care,

Long-Term Care and Hospice section, page 70).

430, 431

Current

estimates of the lifetime costs of care may underestimate

the financial impact of a relative’s dementia on family

caregivers’ health and workplace productivity, as other

potential costs such as home modifications, respite service

use, and health/work productivity challenges are not always

considered in cost estimates.

432

Caregiving

Helping with instrumental activities of daily living

(IADLs), such as household chores, shopping, preparing

meals, providing transportation, arranging for doctor’s

appointments, managing finances and legal affairs, and

answering the telephone.

Helping the person take medications correctly, either via

reminders or direct administration of medications.

Helping the person adhere to treatment recommendations

for dementia or other medical conditions.

Assisting with personal activities of daily living (ADLs), such

as bathing, dressing, grooming and feeding and helping the

person walk, transfer from bed to chair, use the toilet and

manage incontinence.

Managing behavioral symptoms of the disease such as

aggressive behavior, wandering, depressive mood, agitation,

anxiety, repetitive activity and nighttime disturbances.

Finding and using support services such as support groups

and adult day service programs.

Making arrangements for paid in-home, nursing home or

assisted living care.

Hiring and supervising others who provide care.

Assuming additional responsibilities that are not necessarily

specific tasks, such as:

• Providing overall management of getting through the day.

• Addressing family issues related to caring for a relative

with Alzheimer’s disease, including communication with

other family members about care plans, decision-making

and arrangements for respite for the main caregiver.

• Managing other health conditions (i.e., “comorbidities”),

such as arthritis, diabetes or cancer.

• Providing emotional support and a sense of security.

Dementia Caregiving Tasks

Table

44 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Among the reasons shared by caregivers for providing

assistance to a person with Alzheimer’s or another

dementia are the desire to keep a family member or friend

at home (65%), close proximity to the person with dementia

(48%), and the caregiver’s perceived obligation to the

person with dementia (38%).

A10

In addition, caregivers often

indicate love and a sense of duty when describing what

motivates them to assume care responsibilities for a

relative or friend living with dementia.

433

Individuals with dementia living in the community are

more likely than older adults without dementia to rely on

multiple unpaid caregivers (often family members); 30%

of older adults with dementia rely on three or more unpaid

caregivers, whereas 23% of older adults without dementia

do so.

434

Only a small percentage (8%) of older adults with

dementia do not receive help from family members or

other informal care providers. Of these individuals,

nearly half live alone, perhaps making it more difficult to

ask for and receive informal care.

434

Among caregivers

of spouses with dementia who are at the end of life,

close to half provide care without the help of other family

or friends.

435

Living alone with dementia may be a particular challenge

for certain subgroups, such as lesbian, gay, bisexual

and transgender (LGBT) individuals, who may experience

greater isolation due to potential social stigma and

a diminished social network of available family or

friend caregivers.

436-439

Caregiving and Women

The responsibilities of caring for someone with dementia

often fall to women. Approximately two-thirds of dementia

caregivers are women.

A10, 440, 441, 446

Findings from the 2018

National Health and Wellness survey indicated that more

dementia caregivers in the United States are women

(61.5%) than in Japan (51.9%) or five European countries/

regions (56.3%: France, Germany, the United Kingdom, Italy

and Spain).

448

Over one-third of dementia caregivers in the

United States are daughters caring for a parent.

426, 434

It is

more common for wives to provide informal care for a

husband than vice versa.

449

On average, female caregivers

spend more time caregiving than male caregivers.

434

The

2015-2017 BRFSS surveys found that of all dementia

caregivers who spend more than 40 hours per week

providing care, 73% were women.

443

Two and a half times

as many women as men reported living with the person

with dementia full time.

450

Of those providing care to

someone with dementia for more than five years, 63%

were women.

443

Similarly, caregivers who are women may

experience slightly higher levels of burden, impaired mood,

depression and impaired health than do caregivers who

are men, with evidence suggesting that these differences

arise because female caregivers tend to spend more time

caregiving, assume more caregiving tasks, and care for

someone with more cognitive, functional and/or behavioral

problems.

451-453

Among dementia caregivers who indicated

a need for individual counseling or respite care, the large

majority were women (individual counseling, 85%, and

respite care, 84%).

443

Sex/gender

•

Approximately two-thirds of dementia caregivers are women.

A10, 440, 441

Race/ethnicity

•

Two-thirds of caregivers are White,

A10, 441, 442

10% are Black, 8% are Hispanic, and 5% are

Asian American.

A10

The remaining 10% represent a variety of other racial/ethnic groups.

Living status

•

Most caregivers (66%) live with the person with dementia in the community.

434

•

Over 60% of caregivers are married, living with a partner or in a long-term relationship.

A10, 441

•

Approximately one-quarter of dementia caregivers are “sandwich generation” caregivers — meaning that

they care not only for an aging parent but also for at least one child.

A10, 442, 443

Caring for parents

•

Over half of caregivers are providing assistance to a parent or in-law with dementia.

442

•

Among primary caregivers (individuals who indicate having the most responsibility for helping their relatives)

of people with dementia, over half take care of their parents.

444-446

Income

•

Forty-one percent of caregivers have a household income of $50,000 or less.

A10

Education

•

Approximately 40% of dementia caregivers have a college degree or more of education.

A10, 441, 442

Age

•

About 30% of caregivers are age 65 or older.

A10

•

Twenty-three percent of caregivers ages 18 to 49 help someone with dementia, which is an increase of

7% between 2015 and 2021.

447

Caring for spouse

•

Approximately 10% of caregivers provide help to a spouse with Alzheimer’s disease or another dementia.

442

Who Are the Caregivers?

Table

Race, Ethnicity and Dementia Caregiving

Only recently have population-based studies examined

racial disparities in dementia caregiving. Close to half of

Black and Hispanic individuals with dementia live with adult

children (47.1%), compared with less than a quarter of

White individuals with dementia (24.6%).

454

Compared

with White caregivers, Black caregivers are more likely

to provide more than 40 hours of care per week

(54.3% versus 38.6%) and care for someone with dementia

(31.7% versus 11.9%). Black dementia caregivers are

also more likely to provide help with ADLs than White

dementia, White non-dementia, and Black non-dementia

caregivers.

455, 456

Black male dementia caregivers are

3.3 times more likely to experience financial burdens when

compared with Black female and White male and female

dementia caregivers, whereas Black and White male

dementia caregivers are 37% to 71% less likely than White

female dementia caregivers to indicate emotional

burden.

457

Black dementia caregivers were found to be 69%

less likely than White caregivers to use respite services,

although the need for dementia care relief is considerable

among Black families.

458, 459

Hispanic, Black and Asian

American dementia caregivers indicate greater care

demands, less outside help/formal service use and greater

depression compared with White caregivers.

460-462

In a

nationally representative study,

463

Black and Hispanic

participants had poorer health prior to becoming a

caregiver for a spouse with dementia than those of similar

race/background who did not become caregivers; such

differences were not apparent among White caregivers.

Discrimination is also linked with depressive symptoms

among African American dementia caregivers.

464

Black caregivers are more likely than White caregivers to

report positive aspects of caregiving.

455

A meta-analysis

found that Black dementia caregivers indicate slightly

higher psychological well-being than White dementia

caregivers. Hispanic dementia caregivers, however,

reported slightly lower physical well-being than White

dementia caregivers.

465

Other research has examined

variations in self-rated health among dementia caregivers

of diverse racial and ethnic backgrounds. Support from

family and friends is associated with better self-rated

health for Black dementia caregivers but not for White or

Hispanic caregivers.

460

Having a more positive perceived

relationship between the caregiver and person with

dementia was associated with better self-rated health

among Black and White caregivers.

460

Non-Hispanic Black

dementia family caregivers are less likely to exercise and

live with diabetes than non-Hispanic White and non-

Hispanic Asian dementia family caregivers.

466

The need for culturally informed theories, research

frameworks, and services for people living with dementia

and their caregivers is pronounced.

467-471

Cultural values

(e.g., familismo: the Latino cultural value of placing family

needs and loyalty to one’s family above one's own needs)

may influence disparities in perceptions and use of support

among caregivers across diverse racial and ethnic

contexts.

472, 473

Underutilization of needed services on the

part of Latino dementia caregivers may be due to culturally

incongruent expectations on the part of health care

systems and providers that assume that families are the

predominant/only support network for Latino individuals

with dementia.

474

Black/African-American dementia

caregivers' needs include greater education about

dementia treatment, diagnosis, and care strategies;

navigating what is often perceived as a “broken” health care

system; improved access to affordable transportation and

health care services; greater education about navigation of

family conflict; increased availability of respite support;

better communication about dementia within the Black/

African-American community; and increased availability of

financial/legal planning.

459, 475-477

Dementia caregiving is experienced by many, regardless of

race or ethnicity. The comparisons above suggest that the

experience of caregiving often varies depending on racial

and ethnic context. Studies of caregivers often lack

sufficient numbers of diverse participants to confirm these

findings or delve deeper into them for important insights.

Recent reviews and national summits have emphasized the

need to revise recruitment strategies to capture the range

of dementia care experiences among caregivers of diverse

racial and ethnic identity.

462

If representation in dementia

care research is not improved, our ability to generalize

findings or determine whether findings vary by diverse

subgroups is not possible. This hinders the progress of all

dementia caregiving research. Furthermore, if individuals

continue to lack representation in dementia research, they

will not receive the benefits of racially and ethnically

sensitive prevention, treatment or care innovations.

460, 462

Establishing stronger relationships with existing organizations

and resources in Black communities, indigenous communities

and other communities of color offers the potential for

research-based partnerships to enhance representation in

dementia research and result in more culturally appropriate

and effective services.

468, 474, 478-490

Caregiving Tasks

The care provided to people with Alzheimer’s or other

dementias is wide-ranging and in some instances all-

encompassing. Table 7, page 43, summarizes some of the

most common types of dementia care provided.

Caregiving

This report keeps the racial, ethnic and other

population identiﬁers used in source documents

when describing ﬁndings from speciﬁc studies.

46 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Created from data from the National Alliance for Caregiving in Partnership with the Alzheimer’s Association.

442

Although the care provided by family members of people

with Alzheimer’s or other dementias can be similar to that

provided by caregivers of people with other conditions,

dementia caregivers tend to provide more extensive

assistance.

491

Family caregivers of people with dementia are

more likely to monitor the health of the care recipient than

are caregivers of people without dementia (79% versus

66%).

492

Data from the 2011 National Health and Aging

Trends Study indicated that caregivers of people with

dementia are more likely than caregivers of people without

dementia to provide help with self-care and mobility

(85% versus 71%) and health or medical care (63% versus

52%).

427, 440

Figure 9 illustrates how caregivers of people

with dementia are more likely than caregivers of other

older people to assist with ADLs.

442

People with dementia tend to have larger networks of

family and friends involved in their care compared with

people without dementia. More family members and

friends in dementia care networks tend to provide help

for household activities, mobility and functional needs,

and transportation than family members and friends in

non-dementia care networks.

493

When a person with Alzheimer’s or another dementia

moves to an assisted living residence or a nursing home,

the help provided by his or her family caregivers usually

changes from the comprehensive care summarized in

Table 7 to providing emotional support, interacting with

residential care staff and advocating for appropriate care.

However, some family caregivers continue to help with

bathing, dressing and other ADLs.

494, 495

Duration of Caregiving

One national poll found that 86% of dementia caregivers

provided assistance for at least the past year.

A10

According

to another study, well over half (57%) of family caregivers

of people with Alzheimer’s or other dementias living in the

community had provided care for four or more years.

434

Hours of Unpaid Care and Economic Value of Caregiving

In 2023, the 11.5 million family and other unpaid

caregivers of people with Alzheimer’s or other dementias

provided an estimated 18.4 billion hours of unpaid help.

This number represents an average of nearly 31 hours of

care per caregiver per week, or 1,612 hours of care per

caregiver per year.

With this care valued at the average

of the state minimum wage and the median hourly cost of

a home health aide (a conservative estimate),

the

estimated economic value of care provided by family and

other unpaid caregivers of people with dementia across the

United States was $346.6 billion in 2023. Table 9, page 47,

shows the total hours of unpaid care as well as the value of

care provided by family and other unpaid caregivers for the

Getting in and out

of beds and chairs

Dealing with

incontinence

Activity Bathing or

showering

Feeding Getting to and

from the toilet

Getting

dressed

Caregivers of people with Alzheimer’s or other dementias

Percentage Caregivers of other older people

45%

43%

38%

30%

34%

23%

33%

20%

32%

25%

32%

12%

Proportion of Caregivers of People with Alzheimer’s or Other Dementias Versus Caregivers of

Other Older People Who Provide Help with Speciﬁc Activities of Daily Living, United States, 2015

Figure

47Caregiving

*State totals do not add to the U.S. totals due to rounding.

Created from data from the 2016, 2020, 2021, and 2022 Behavioral Risk Factor Surveillance System survey,

U.S. Census Bureau, National Alliance for Caregiving, AARP, U.S. Department of Labor and Genworth.

A7,A8,A9

State

Number of

Caregivers

(in thousands)

Hours of

Unpaid Care

(in millions)

Value of

Unpaid Care

(in millions

of dollars)

Alabama 217 387 $5,310

Alaska 25 39 796

Arizona 292 483 10,228

Arkansas 155 270 4,448

California 1,373 1,864 44,272

Colorado 177 307 7,249

Connecticut 128 201 4,331

Delaware 31 46 909

District of Columbia 14 15 343

Florida 840 1,321 24,437

Georgia 374 755 11,417

Hawaii 60 91 1,907

Idaho 66 105 1,875

Illinois 311 480 9,840

Indiana 216 322 5,186

Iowa 98 125 2,284

Kansas 89 125 1,989

Kentucky 157 302 4,869

Louisiana 168 256 3,428

Maine 51 87 1,911

Maryland 247 405 8,144

Massachusetts 213 246 5,668

Michigan 380 872 17,044

Minnesota 164 225 5,276

Mississippi 93 175 2,380

Missouri 223 350 6,478

State

Number of

Caregivers

(in thousands)

Hours of

Unpaid Care

(in millions)

Value of

Unpaid Care

(in millions

of dollars)

Montana 17 25 $478

Nebraska 40 62 1,188

Nevada 84 142 2,681

New Hampshire 48 77 1,529

New Jersey 272 494 10,882

New Mexico 67 118 2,142

New York 543 879 18,996

North Carolina 373 723 10,939

North Dakota 19 25 465

Ohio 414 624 11,427

Oklahoma 108 189 3,099

Oregon 170 229 5,285

Pennsylvania 465 822 13,668

Rhode Island 36 51 1,132

South Carolina 219 361 5,550

South Dakota 27 34 716

Tennessee 369 499 7,804

Texas 1,016 1,532 23,937

Utah 112 132 2,465

Vermont 19 28 615

Virginia 342 662 12,572

Washington 247 378 9,499

West Virginia 65 115 1,585

Wisconsin 205 297 5,528

Wyoming 16 21 385

U.S. Total 11,457 18,376 $346,585

Number of Caregivers of People with Alzheimer’s or Other Dementias, Hours of Unpaid Care

and Economic Value of Unpaid Care by State, 2023*

Table

48 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

United States and each state. Unpaid caregivers of people

with Alzheimer’s or other dementias provided care valued

at more than $5 billion in each of 25 states. Unpaid

caregivers provided care valued at more than $18 billion in

each of the four most populous states — California, Texas,

Florida and New York. A longitudinal study of the monetary

value of family caregiving for people with dementia found

that the overall value of daily family care increased 18% with

each additional year of providing care, and that the value of

this care further increased as the care recipient’s cognitive

abilities declined.

496

In contrast, family care costs are

reduced up to 24% in situations where caregivers

indicated they were emotionally close to the person with

dementia.

497

More research is needed to estimate the

future value of family care for people with Alzheimer’s

disease and other dementias as the U.S. population

continues to age, particularly since many existing

economic studies only consider primary caregivers when

there are often multiple relatives and others helping an

older person with dementia.

434, 498

Apart from its long duration, caregiving involves demands

that are time-intensive. Caregivers of people with dementia

report providing 27 hours more care per month on

average (92 hours versus 65 hours) than caregivers of

people without dementia.

440

An analysis of national

caregiving trends from 1999 to 2015 found that among

dementia caregivers the average hours of care per week

increased from 45 in 1999 to 48 in 2015; among non-

dementia caregivers, weekly hours of care decreased from

34 to 24.

499

The amount of time required for caregiving

increases as dementia progresses; one study showed that

people with dementia required 151 hours of caregiving

per month at the outset of dementia and this increased to

283 hours per month eight years later. This is an increase

from approximately 5 hours a day to 9 hours a day (it is

important to note that some family members/caregivers

provide assistance to someone due to cognitive issues

before a formal diagnosis of Alzheimer’s disease or a

related dementia).

500, 501

Each instance of a decrease in

ADL or IADL function in someone with dementia results

in nearly five more hours of monthly caregiving compared

with a similar functional decrease for someone without

dementia.

502

Over a two-year period, one national study

found that impairment in one additional self-care activity

(e.g., bathing, dressing, eating and using the toilet) for

those with dementia resulted in 28 additional hours

of family care required per month; for those without

dementia, an additional self-care need was associated

with an increase in 15 hours of family care per month.

503

Health and Economic Impacts of Alzheimer’s Caregiving

Caring for a person with Alzheimer’s or another dementia

poses special challenges. For example, people in the

moderate to severe stages of Alzheimer’s dementia

experience losses in judgment, orientation, and the ability

to understand and communicate effectively. Family

caregivers must often help people with dementia manage

these issues. The personality and behavior of a person with

dementia are affected as well, and these changes are often

among the most challenging for family caregivers.

504-506

Individuals with dementia also require increasing levels of

supervision and personal care as the disease progresses. As

the person with dementia’s symptoms worsen, caregivers

can experience increased emotional stress and depression;

new or exacerbated health problems; and depleted income

and finances due in part to disruptions in employment and

paying for health care or other services for both

themselves and the person living with dementia.

507-514

Caregiver Emotional and Social Well-Being

The intimacy, shared experiences and memories that

are often part of the relationship between a caregiver

and person living with dementia may be threatened due

to the memory loss, functional impairment and

psychiatric/behavioral disturbances that can accompany

the progression of dementia. In the 2017 National Poll

on Healthy Aging, however, 45% of caregivers of people

with dementia indicated that providing help to someone

with cognitive impairment was very rewarding.

446

In the

2011 National Study of Caregiving, greater satisfaction

from dementia caregiving was associated with more

emotional support from family members and friends.

515

Although caregivers report positive feelings about

caregiving, such as family togetherness and the

satisfaction of helping others,

A10, 516-524

they also

frequently report higher levels of burden and stress;

depression or other adverse mental health outcomes;

strain; and problems with navigating care transitions

when compared with other caregivers or non-caregivers.

Created from data from the Alzheimer’s Association.

A10

59%

Emotional stress

of caregiving

Stress Physical stress

of caregiving

38%

Percentage

Percentage of Dementia Caregivers Who Report

High to Very High Stress Due to Caregiving

Figure

Burden and Stress

• Compared with caregivers of people without

dementia, caregivers of those with dementia indicate

more substantial emotional, financial and physical

difficulties.

440, 491

• Fifty-nine percent of family caregivers of people with

Alzheimer’s or other dementias rated the emotional

stress of caregiving as high or very high (Figure 10).

A10

• Spousal dementia caregivers are more likely than

non-spousal dementia caregivers to experience

increased burden over time. This increased burden

also occurs when the person with dementia develops

behavioral changes and decreased functional ability.

525

• Many people with dementia have co-occurring

chronic conditions, such as hypertension or arthritis,

which may complicate caregiving. For example, a

national study found that caregivers of people with

dementia who had a diagnosis of diabetes or

osteoporosis were 2.6 and 2.3 times more likely,

respectively, to report emotional difficulties with care

compared with caregivers of people with dementia

who did not have these co-occurring conditions.

526

Depression and Mental Health (see also Table 10, page 51)

• A meta-analysis reported that caregivers of

people with dementia were significantly more

likely to experience depression and anxiety than

non-caregivers.

453

Dementia caregivers also indicate

more depressive symptoms than non-dementia

caregivers.

527

• The prevalence of depression is higher among

dementia caregivers (30% to 40% as reported in

multiple studies) than other caregivers, such as those

who provide help to individuals with schizophrenia

(20%) or stroke (19%).

528, 529

• Caring for a spouse with dementia is associated with a

30% increase in depressive symptoms compared with

spousal caregivers of partners without dementia.

530

• In a meta-analysis, the type of relationship was the

strongest predictor of caregiver depression;

caregivers of spouses with dementia had two-and-

a-half times higher odds of having depression than

caregivers of people with dementia who were

not spouses.

528

• The prevalence of anxiety among dementia

caregivers is 44%, which is higher than among

caregivers of people with stroke (31%).

528

• Dementia caregivers in the United States were more

likely to have experienced depression (32.5%) or

anxiety (26%) when compared with dementia

caregivers from Japan (16.8% and 12.9%, respectively)

or those from across Germany, Italy, Spain, France

and the United Kingdom (29.3% for depression and

22.4% for anxiety).

448

• Caregivers of individuals with Alzheimer’s report

more subjective cognitive problems (for example,

problems with memory) and experience greater

declines in cognition over time than non-caregivers

matched on age and other characteristics.

531, 532

• Caring for people with dementia who have four or

more behavioral and psychological symptoms (for

example, aggression, self-harm and wandering)

represents a “tipping point,” as these caregivers are

more likely to report clinically meaningful depression

and burden.

533

• A systematic review found the prevalence of suicidal

ideation (thinking about or making plans for suicide)

in dementia caregivers with a mean age of 64 was

32% compared with 2.7% in U.S. adults age 56 and

older (please note that an exact age comparator is

not available).

534, 535

• Providing physical and medical care is associated with

worse mental health among dementia caregivers than

non-dementia caregivers.

491

Other Key Findings About the Challenges of

Dementia Caregiving

• Caregivers of people with Alzheimer’s or other

dementias are twice as likely as caregivers of

individuals without dementia (22% compared with

11%) to report that completing medical/nursing-

related tasks (for example, injections, tube feedings

and catheter/colostomy care) was difficult.

492

• Dementia caregivers often experience challenges

managing medications for individuals with dementia,

such as non-adherence.

536-539

• Compared with non-dementia caregivers, dementia

caregivers indicate a greater decrease in their social

networks (e.g., other relatives, friends, acquaintances).

540

• According to a national Alzheimer’s Association poll

of caregivers, respondents often believed they had

no choice in taking on the role of caregiver.

A10

• The poll also found that more than half (53%) of

women with children under age 18 felt that

caregiving for someone with dementia was more

challenging than caring for children.

A10

• Non-heterosexual dementia caregivers are

significantly younger and more likely to be employed

than heterosexual dementia caregivers and indicate

greater difficulty when paying for necessities while

also reporting higher family quality of life than their

heterosexual peers.

541

• Many caregivers of people with Alzheimer’s or other

dementias are at risk of social isolation.

542

Forty-one

percent of dementia caregivers in the 2014

Alzheimer’s Association poll reported that no one

else provided unpaid assistance.

A10

Caregiving

50 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

• Among dementia caregivers of care recipients who

have experienced severe psychiatric symptoms

(e.g., aggression, anxiety), those who live in low- or

medium-income neighborhoods indicate higher

distress than those caregivers living in high-income

neighborhoods.

543

• In a survey of caregivers from a large health care

system, less than 4 in 10 respondents (39.2%) agreed

that their primary care providers help them with

managing symptoms of a care recipient with

dementia.

544

Stress of Care Transitions

• Caregivers who helped someone with a formal

diagnosis of dementia indicated more emotional

difficulty and family disagreement than caregivers

of individuals without a formal diagnosis. However,

those caregivers of individuals with a formal dementia

diagnosis were also more engaged in communication

during doctors’ visits and also more likely to receive

caregiver training than those who assisted someone

without a diagnosis of dementia, suggesting the

importance of linking support to dementia diagnostic

procedures.

545

• Admitting a relative to a residential care facility has

mixed effects on the emotional and psychological

well-being of dementia family caregivers. Some

studies suggest that distress remains unchanged or

even increases for some caregivers (such as spouses),

but other studies have found that distress

decreases.

495, 546-548

• The demands of caregiving may intensify as people

with dementia approach the end of life.

549

In the year

before the death of the person living with dementia,

59% of caregivers felt they were “on duty” 24 hours

a day, and many felt that caregiving during this time

was extremely stressful.

550

The same study found

that 72% of family caregivers experienced relief

when the person with Alzheimer’s or another

dementia died.

550

• In the last 12 months of life, people with dementia

relied on more hours of family care (64.5 hours

per week) than people with cancer (39.3 hours

per week).

551

Caregiver Physical Health and Health Conditions

For some caregivers, the demands of caregiving may

cause declines in their own health. Evidence suggests

that the stress of providing dementia care increases

caregivers’ susceptibility to disease and health

complications.

552

As shown in Figure 10, page 48, 38% of

Alzheimer’s and other dementia caregivers indicate that

the physical stress of caregiving is high to very high.

A10

Dementia caregivers are 1.5 times more likely to indicate

substantial physical difficulty providing assistance to

their care recipients compared with non-dementia

caregivers.

553

The distress associated with caring for a

relative with Alzheimer’s or another dementia has also

been shown to negatively influence the quality of family

caregivers’ sleep.

554-557

Compared with those of the same

age who were not caregivers, caregivers of people with

dementia are estimated to lose between 2.4 hours and

3.5 hours of sleep a week.

555

Tables 10 and 11 present data on caregiver physical and

mental health. Table 10, page 51, presents state-by-state

data on the health status of dementia caregivers, and

Table 11, page 52, compares the percentages of dementia

caregivers, non-dementia caregivers and non-caregivers

who report having a specific chronic health condition.

General Health

Seventy-four percent of caregivers of people with

Alzheimer’s or other dementias reported that they were

“somewhat concerned” to “very concerned” about

maintaining their own health since becoming a

caregiver.

A10

A 2017 poll found that 27% of dementia

caregivers delayed or did not do things they should to

maintain their own health.

446, 558, 559

Data from the Health

and Retirement Study showed that dementia caregivers

who provided care to spouses were much more likely (41%

increased odds) than other spousal caregivers of similar

age to become increasingly frail during the time between

becoming a caregiver and their spouse’s death.

560-563

Physiological Changes

The chronic stress of caregiving may be associated

with an increased incidence of hypertension and a number

of physiological changes that could increase the risk of

developing chronic conditions, including high levels of stress

hormones, impaired immune function, slow wound healing

and coronary heart disease.

564-571

A recent meta-analysis

of studies examining the associations between family

caregiving, inflammation and immune function suggests

that dementia caregivers had slight reductions in immune

function and modestly elevated inflammation.

572

However,

a study of physiological changes before and after the start

of caregiving found no change in six biomarkers of

inflammation among dementia caregivers.

573

Health Care

When people with dementia also have depression,

behavioral disturbances or low functional status, their

caregivers face a higher risk of emergency department visits

and hospitalization compared with caregivers of people

with dementia without these challenges.

574, 575

Increased

depressive symptoms among caregivers are linked to more

frequent caregiver doctor visits, increased outpatient tests

and procedures, and greater use of over-the-counter and

prescription medications.

575

Dementia caregivers also have

twice the odds of experiencing an overnight hospitalization

than non-caregivers.

576

51Caregiving

*Data are for caregivers of individuals whose main reason for needing care is Alzheimer’s or other dementia.

For other states, the individuals' main reason for needing care could be another condition, but the individuals also

were living with Alzheimer's or other dementia.

†

Data not included because the sample size was less than 50 or the relative standard error was greater than 30%.

Created from data from the Behavioral Risk Factor Surveillance System Survey.

443

State

Percentage

Reporting at Least

One Chronic

Condition

Percentage

Reporting

Depression

Percentage

Reporting

Frequent

Poor Physical

Health

Alabama 57.5 30.9 15.0

Alaska 53.7 27.7 15.2

Arizona 66.7 27.7 15.5

Arkansas 72.8 38.0 25.0

California 61.0 18.6 13.1

Colorado 58.0 36.7 15.5

Connecticut 64.0 27.9 9.4

Delaware 61.8 23.3 †

District of Columbia* 65.1 † †

Florida 66.4 28.6 13.6

Georgia 64.9 33.2 15.1

Hawaii 49.6 16.5 8.1

Idaho 57.5 31.1 13.4

Illinois 64.2 29.0 †

Indiana 57.3 34.1 18.2

Iowa 60.5 27.4 13.8

Kansas 60.6 33.8 18.7

Kentucky 65.5 39.8 21.4

Louisiana 62.4 37. 2 15.9

Maine 60.8 38.0 12.8

Maryland 55.7 24.8 8.4

Massachusetts 54.2 20.2 †

Michigan 66.0 30.6 22.1

Minnesota 53.1 29.8 8.4

Mississippi 57.0 25.9 22.2

Missouri 59.5 28.1 20.2

State

Percentage

Reporting at Least

One Chronic

Condition

Percentage

Reporting

Depression

Percentage

Reporting

Frequent

Poor Physical

Health

Montana* 56.9 22.8 †

Nebraska 57.6 25.4 13.2

Nevada 54.2 31.1 †

New Hampshire 66.2 28.4 14.7

New Jersey 62.3 27.9 12.8

New Mexico 64.8 31.3 12.6

New York 59.0 24.7 12.0

North Carolina 58.8 41.0 18.1

North Dakota 60.1 30.4 8.6

Ohio 63.7 27.8 17.4

Oklahoma 68.2 39.6 17.2

Oregon 57.4 33.6 8.5

Pennsylvania 76.6 32.5 16.0

Rhode Island 54.2 41.0 11.5

South Carolina 60.6 31.0 15.2

South Dakota 61.0 22.2 †

Tennessee* 66.7 29.8 †

Texas 59.0 26.7 11.2

Utah 59.3 34.6 14.9

Vermont 61.5 35.4 10.7

Virginia 64.1 31.2 15.1

Washington 61.1 39.0 18.0

West Virginia 63.5 32.2 12.0

Wisconsin 62.9 27.8 18.9

Wyoming 59.8 22.8 †

Percentage of Dementia Caregivers Reporting Health Conditions by State, 2016-2022

Table

*Table includes caregivers age 18 and older.

†

Combination of coronary heart disease and stroke.

Created from data from the Behavioral Risk Factor Surveillance

System survey.

443

Mortality

Studies of how the health of people with dementia

affects their caregivers’ risk of dying have had mixed

findings.

577, 578

For example, spouses of hospitalized care

recipients with dementia were more likely to die in the

following year than caregivers whose spouses were

hospitalized but did not have dementia (after accounting

for differences in caregiver age).

579

In addition, caregivers

who perceived higher strain due to care responsibilities

were at higher risk for death than caregivers who

perceive little or no strain.

580

In contrast, a longitudinal

analysis of the Health and Retirement Study found that

dementia caregivers were less likely to die than non-

caregivers of similar age over a 12-year period. These

results are consistent with a protective effect of dementia

care, at least as it pertains to mortality.

577

The findings

are also consistent with the possibility that individuals

who assume dementia care roles do so in part because

their initial health allows them to do so. Eighteen percent

of spousal caregivers die before their partners with

dementia.

581

Caregiver Employment and Finances

Six in 10 caregivers of people with Alzheimer’s or

another dementia were employed or had been employed

in the prior year while providing care.

442

These

individuals worked an average of 35 hours per week

while caregiving.

442

Among people who were employed

in the past year while providing care to someone with

Alzheimer’s or another dementia, 57% reported

sometimes needing to go in late or leave early compared

with 47% of non-dementia caregivers. Eighteen percent

of dementia caregivers reduced their work hours due

to care responsibilities, compared with 13% of non-

dementia caregivers. In particular, adult daughters with

less than a high school degree are most likely to reduce

work hours when compared with other dementia

caregivers. Other work-related changes among dementia

and non-dementia caregivers who had been employed in

the past year are summarized in Figure 11.

442

In the 2018

National Health and Wellness Survey, close to 13% of

dementia caregivers in the United States indicated

absence from work in the past seven days due to a health

problem compared with 6% of dementia caregivers in

Japan and 10% of dementia caregivers across France,

Germany, Italy, Spain and the United Kingdom.

448

addition, caregivers living with a family member with

dementia pay for 64% of total care costs (e.g., total health

care spending and out-of-pocket costs) incurred during

their relatives' last seven years of life.

582

In 2021, it was estimated that dementia caregivers bore

nearly twice the average out-of-pocket costs of non-

dementia caregivers ($12,388 versus $6,667).

431, 583

Examples include costs of medical care, personal care and

household expenses for the person with dementia, and

personal expenses and respite services for the caregiver.

Caregivers of a spouse with dementia indicate higher

home health care expenditures but lower outpatient

expenditures than those who do not have a spouse with

dementia, which suggests a possible “substitution” effect

and greater referrals to home health care by providers for

patients with dementia.

584, 585

National survey data among

“care contributors” (or, a friend or relative who paid for

dementia expenses and/or provided care for someone

with dementia at least once a month in the prior year)

revealed that 48% cut back on other spending and 43%

cut back on savings due to the out-of-pocket costs of

providing help to someone with dementia.

513

Due to care

responsibilities, close to 4 in 10 care contributors

indicated that the “food they bought just didn’t last, and

they didn’t have money to get more,” and 3 in 10 ate less

because of care-related costs.

513

One in 5 caregivers of people with Alzheimer’s or other

dementias (22%) report problems dealing with a bank

or credit union when helping to manage the finances

of people living with dementia, compared with 9% of

caregivers of people without dementia.

442

Condition

Dementia

Caregivers

Non-

Dementia

Caregivers

Non-

Caregivers

Stroke 5.2 3.4 3.2

Coronary heart disease 8.3 7.2 6.6

Cardiovascular disease

†

11.8 9.5 8.6

Diabetes 12.8 11.1 11.3

Cancer 14.3 13.3 11.5

Obesity 32.7 34.6 29.5

Percentage of Dementia Caregivers Who Report Having

a Chronic Health Condition Compared with Caregivers of

People without Dementia or Non-Caregivers*

Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Table

Created from data from the National Alliance for Caregiving in Partnership with the Alzheimer’s Association.

442

Eﬀects of Stress and Other Caregiving Factors on

People with Dementia

Research has documented the effects of caregiver stress

on people with dementia and their use of health care

services. For example, distress on the part of family

caregivers is associated with increased odds of residential

care entry for the person with dementia, exacerbated

behavioral and psychological challenges in the person with

dementia, and increased likelihood of someone with

dementia being abused.

586

Individuals with dementia are

more likely to be hospitalized if their caregiver has less

than one year of caregiving experience when compared

with caregivers who have provided assistance for more

than one year.

587

In addition, care recipients with dementia

whose caregivers indicate greater distress are also more

likely to experience hospitalization.

587, 588

A synthesis of

available qualitative studies found that “personhood,” or

the extent to which others value, support and establish

meaningful relationships with someone with dementia, is

enhanced through personal interactions with family,

friends, other people with dementia and professional

caregivers as well as through opportunities for ongoing

engagement in social and occupational activities/roles.

589

Some meta-analyses suggest that care coordination/case

management and psychoeducational and multi-component

programs delivered to dementia caregivers may improve

important care recipient outcomes, including improvements

in behavior, mood and quality of life and delayed

institutionalization. However, effects sizes are small.

590

Interventions Designed to Assist Caregivers

For more than 35 years, strategies to support family

caregivers of people with dementia have been developed

and evaluated. The types and focus of these strategies (often

called “interventions”) are summarized in Table 12.

511, 591

In general, the goal of interventions is to improve the

health and well-being of dementia caregivers by relieving

the negative aspects of caregiving. Some also aim to delay

nursing home admission of the person with dementia by

providing caregivers with skills and resources (emotional,

social, psychological and/or technological) to continue

helping their relatives or friends at home. Specific

approaches used in various interventions include

providing education to caregivers, helping caregivers

manage dementia-related symptoms, improving social

support for caregivers and providing caregivers with

respite from caregiving duties.

According to a publication on dementia caregiver

interventions that reviewed seven meta-analyses and

17 systematic reviews of randomized controlled trials,

the following characteristics distinguish interventions

Caregiving

Caregivers of people with Alzheimer’s or other dementiasPercentage Caregivers of other people

57%

47%

18%

13%

16%

14%

7% 7% 7%

Went in late,

left early or

took time oﬀ

Took a leave

of absence

Turned down

a promotion

Lost any

beneﬁts

Changes Went from full-

to part-time or

cut back hours

Gave up

working entirely

Received a warning

about performance/

attendance

Retired

early

Work-Related Changes Among Caregivers of People with Alzheimer’s or Other

Dementias Who Had Been Employed at Any Time Since They Began Caregiving

Figure

that are effective: family caregivers are actively involved

in the intervention, in contrast to passively receiving

information; the intervention is tailored and flexible to

meet the changing needs of family caregivers during the

course of a relative’s dementia; and the intervention

meets the needs not only of caregivers but of people

living with dementia as well.

592

A meta-analysis examining

the components of dementia caregiver interventions that

are most beneficial found that interventions that initially

enhance caregiving competency, gradually address the

care needs of the person with dementia, and offer

emotional support for loss and grief when needed

appeared most effective.

593

A prior report examined

randomized, controlled studies of caregiver interventions

and identified 44 interventions that benefited individuals

with dementia as well as caregivers, and more such

interventions are emerging each year.

594-599

Although

several national reports have suggested that the available

scientific evidence does not provide clear suggestions as

to which intervention types benefit dementia caregivers

consistently,

600

other recent meta-analyses report that

specific intervention types (such as psychoeducation;

see Table 12) may result in a small reduction in burden for

caregivers, with other meta-analyses indicating broader

effects of various interventions across multiple dementia

caregiver outcomes.

590, 601-605

A meta-review of over 60

meta-analyses and systematic reviews of dementia

caregiver interventions indicate that although various

interventions may have positive effects on depression and

other measures of caregiver well-being, challenges

related to how interventions are reported and classified

has made it difficult to ascertain what works and why for

dementia caregivers.

606

Interventions for dementia caregivers that have

demonstrated efficacy in scientific evaluations have been

gradually implemented in the community, but are still not

widespread or available to all family caregivers.

607-609

When interventions are implemented, they are generally

successful at improving how caregiver services are

delivered and have the potential to reach a large number

of families while also helping caregivers cope with their

responsibilities (this includes the Alzheimer’s Association

24/7 Helpline).

610-613

In one example, researchers utilized

an “agile implementation” process to more rapidly select,

locate, evaluate and replicate a collaborative care model

for dementia care. This care model has successfully

operated for over a decade in an Indianapolis health care

system.

614

Other efforts have attempted to broaden the

reach and accessibility of interventions for dementia

caregivers through the use of technologies (for instance,

video-phone delivery and online training),

615-623

while

others have disseminated evidence-based dementia care

Type Focus

Case management Provides assessment, information, planning, referral, care coordination and/or advocacy for

family caregivers.

Psychoeducational

approaches

Include structured programs that provide information about the disease, resources and services, and about

how to expand skills to effectively respond to symptoms of the disease (for example, cognitive impairment,

behavioral symptoms and care-related needs). Include lectures, discussions and written materials and are led

by professionals with specialized training.

Counseling Aims to resolve preexisting personal problems that complicate caregiving to reduce conflicts between

caregivers and care recipients and/or improve family functioning.

Psychotherapeutic

approaches

Involve the establishment of a therapeutic relationship between the caregiver and a professional therapist

(for example, cognitive behavioral therapy for caregivers to focus on identifying and modifying beliefs

related to emotional distress, developing new behaviors to deal with caregiving demands, and fostering

activities that can promote caregiver well-being).

Respite Provides planned, temporary relief for the caregiver through the provision of substitute care; examples

include adult day services and in-home or institutional respite care for a certain number of weekly hours.

Support groups Are less structured than psychoeducational or psychotherapeutic interventions. Support groups provide

caregivers the opportunity to share personal feelings and concerns to overcome feelings of isolation.

Multicomponent

approaches

Are characterized by intensive support strategies that combine multiple forms of intervention, such as

education, support and respite, into a single, long-term service (often provided for 12 months or more).

Type and Focus of Caregiver Interventions

Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).54

Created from data from Sörensen et al.,

511

Gaugler et al.

591

and Walter and Pinquart.

603

Table

55Caregiving

COVID-19 and Dementia Caregiving

Existing reports indicate that the COVID-19 pandemic

has posed significant social, psychological, emotional

and physical challenges to family members and friends

who provide care for people with dementia.

657-667

Fatigue and burnout among dementia caregivers and

their lack of access to services and supports for

themselves and for the people for whom they provide

care are common themes in research on the wide-

ranging effects of the COVID-19 pandemic.

668

For

these reasons the pandemic has created a crisis for

dementia caregivers.

657, 669, 670

Telephone interviews with family caregivers in rural

Virginia following the governor's stay-at-home order

in 2020 found that those who were more concerned

about the COVID-19 pandemic and those who received

less help from family and friends experienced greater

feelings of emotional exhaustion and fatigue related to

dementia care.

671

In the earlier stages of the pandemic,

caregivers were limited in or completely barred from

visiting and communicating with relatives who lived in

long-term care residences due to COVID-19 lockdown

procedures. The inability to visit or engage with relatives

resulted in distress as well as significant concerns about

the health of relatives living in residential long-term

care during the pandemic.

672, 673

Studies of end-of-life

care during the pandemic indicated that dementia

caregivers felt that enforced social isolation was

prevalent and adversely influenced the death and dying

experience of relatives during the pandemic.

674

Adult

day programs and other community-based services in

many states were interrupted or closed.

675

These and

other factors shaped by the COVID-19 pandemic have

caused emotional distress and other negative outcomes

among caregivers.

623, 676

In addition, staff and directors

of adult day service programs in the United States

reported perceived declines in cognition, function and

well-being among clients due to state closures during

the pandemic.

676

Together, this suggests the need for

improved support of long-term programs that serve

community-residing people with dementia and their

caregivers as well as strategies/policies to maintain links

between family caregivers and residents of congregate

care settings (assisted living, nursing homes) during

future public health emergencies.

677, 678

Studies have shown that family caregivers who were

able to engage in more direct phone and email contact

with relatives in long-term care residences during

COVID-19 lockdowns indicated greater emotional

well-being for themselves and their relatives, whereas

relying on residential care staff to engage in

communication resulted in lower perceived well-being

among family caregivers and their relatives.

679

Other

studies suggested that some dementia family caregivers

adjusted during the pandemic by relying more heavily

on other sources of family/unpaid help as well as

technologies to maintain social connection with

relatives.

680-683

In studies of dementia caregivers of

relatives living in nursing homes or similar residential

settings, caregivers indicated a number of challenges

during the COVID-19 pandemic, including severely

limited contact with relatives due to visitation

restrictions, a lack of transparent information and

communication from care residences, fears of relatives

dying alone and concerns about overburdened staff at

care residences.

673, 684

In addition, caregivers highlighted

a number of resources and practices that were helpful

during COVID-19, including effective infection control

measures adopted by care residences, robust

communication with staff, and the need for creativity

when remaining socially connected with relatives in

nursing homes or similar residential settings.

673

There

is also evidence of racial and gender differences in

dementia care provision during the pandemic. Compared

with White dementia and non-dementia caregivers as

well as Black non-dementia caregivers, Black dementia

caregivers provided greater ADL care to relatives with

dementia.

456

Providing telehealth support to dementia

caregivers that was culturally appropriate, delivering

COVID-19 safety education, and offering compassionate

listening appeared to benefit social connections and

reduce distress.

685, 686

In a survey, women dementia

caregivers were more likely to indicate needs related

to carrying out caregiving responsibilities during the

pandemic, whereas men indicated more needs for health

and social resources. Men were also more likely to

report psychological distress.

687

At the outset of the pandemic, the National Institutes

of Health and other federal agencies issued multiple

requests for rapid grant applications to study and design

interventions to mitigate the effects of COVID-19 on

people with dementia and their caregivers.

688

The

Alzheimer’s Association also provided regularly updated

guidance for dementia caregivers and professional care

providers as the pandemic unfolded. In addition, the

challenges of the pandemic have motivated some

service providers to transition their support programs

toward remote/virtual care delivery, which has helped to

extend the reach and accessibility of dementia care

innovations.

689, 690

Concerns remain, however, about the

“digital divide” facing caregivers who do not have reliable

broadband access or do not regularly use the internet.

56 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

interventions into community-based programs and health

care systems.

610, 624, 625

Dissemination efforts, such as

Best Practice Caregiving, have attempted to provide

tools and resources to providers and others to facilitate

the implementation of successful interventions into

community-based organizations, health care systems

and other “real-world” settings.

626

Because caregivers and the settings in which they

provide care are diverse, more studies are required to

define which interventions are most effective for

specific situations and how these interventions are

successful.

627-631

Improved tools and measures to

personalize services for caregivers to maximize their

benefits represent an emerging area of research.

632-637

More studies are also needed to adapt proven

interventions or develop new intervention approaches for

families from different racial, ethnic and socioeconomic

backgrounds and in different geographic settings.

462, 638-646

Additional research on interventions focused on disease

stages is also required, as is research on specific

intervention needs for LGBT caregivers for whom a lack

of inclusive practices on the part of health care

professionals, stigma, and a reluctance to seek support

may result in greater unmet needs compared with

non-LGBT dementia caregivers.

439, 647, 648

In 2019, the National Institute on Aging (NIA) awarded

funding to create the NIA Imbedded Pragmatic AD/ADRD

Clinical Trials (IMPACT) Collaboratory. The Collaboratory

includes experts from more than 30 research universities/

centers and supports pilot trials and larger studies that

test non-drug, care-based interventions for people living

with dementia. The goal of IMPACT is to expedite the

timeline of research implementation in real-world

settings to improve care for people living with dementia

and their caregivers. In 2020, the CDC established three

Public Health Centers of Excellence on dementia to

disseminate best practices and tools to local, tribal and

state public health organizations throughout the

United States; one of those Centers focuses on

dementia caregiving.

The Alzheimer’s Association has also undertaken several

efforts to improve dementia care interventions and

services. Its dementia care practice recommendations

649

place individuals with dementia and their caregivers at the

center of how care should be delivered (see Figure 12).

Essential to this model is the need to reconsider how care

for people with dementia is measured and designed by

moving away from an approach that focuses on loss of

abilities to one that emphasizes the individual’s unique

needs, personal experiences and strengths. This person-

centered care philosophy not only values and respects the

individual with dementia but also promotes well-being and

health.

589, 650

Frameworks such as the Alzheimer’s

Created from data from the Alzheimer’s Association.

649

Association dementia care practice recommendations

are designed to shift how researchers and care providers

think about dementia and may point the way to a

greater understanding of the resilience, adaptability and

possibilities of maintenance or even improvement of

skills and abilities when living with dementia.

651, 652

A core

element of these frameworks is ensuring that every

experience and interaction is seen as an opportunity to

have authentic and meaningful engagement, which in

turn helps create a better quality of life for the person

with dementia and their caregivers.

Trends in Dementia Caregiving

There is some indication that families have greater

capacity to manage the care they provide to relatives

with dementia than in the past. Compared with dementia

caregivers in 1999, dementia caregivers in 2015 were

significantly less likely to report physical difficulties (from

30% in 1999 to 17% in 2015) and financial difficulties

(from 22% in 1999 to 9% in 2015) related to care

provision. In addition, use of respite care by dementia

caregivers increased substantially (from 13% in 1999 to

27% in 2015).

499

However, as noted earlier, more work is

needed to ensure that interventions for dementia

caregivers are available and accessible to those who need

them. A 2016 study of the Older Americans Act’s National

Family Caregiver Support Program found that over half

Individuals with

Dementia and

Their Caregivers

Detection and

Diagnosis

Assessment and

Care Planning

Medical

Management

Information,

Education and

Support

Dementia-

Behaviors

Activities of

Daily Living

Workforce

Supportive and

Therapeutic

Environment

Transition and

Coordination

of Services

Person-Centered Care Delivery

Figure

(52%) of Area Agencies on Aging did not offer evidence-

based family caregiver interventions.

653

In addition, there

is some indication that the number of family members

available to provide care to older relatives with

health needs is likely to decrease due to a range of

sociodemographic and health trends in the U.S. (e.g., the

aging of the U.S. population, a lower birth rate and adult

children’s geographic mobility/dispersion over the prior

several decades).

654

The need to bridge this impending

“family care gap” and other dementia caregiving

challenges and concerns through new policies, services

and research is a growing public health concern.

655, 656

A National Strategy to Support

Family Caregivers

The Recognize, Assist, Include, Support, and Engage

(RAISE) Family Caregivers Act, which was signed into law

in January 2018, authorized the Secretary of Health

and Human Services to develop the first national

strategy to support family caregivers. To advance the

development of this strategy, a 30-member Family

Caregiving Advisory Council was established to provide

key recommendations, guidance and best practices that

support family caregivers. In September 2022 the

Advisory Council delivered its National Strategy to

Support Family Caregivers to Congress. It features

nearly 350 actions that 15 federal agencies will adopt

and 150 actions that states, communities and others can

take. The four core principles that drive these many

supportive actions include: 1) placing the family and

person at the center of all interactions; 2) addressing

trauma and its impact on families; 3) advancing equity,

accessibility and inclusion for family caregivers in

underserved communities; and 4) elevating direct care

workers as family caregiving partners.

691

On July 31, 2023, the Centers for Medicare & Medicaid

Services (CMS) announced that beginning July 2024

it will support the Guiding an Improved Dementia

Experience (GUIDE) Model until 2032. The GUIDE

Model features the provision of comprehensive

dementia care coordination and management, caregiver

education and support, and respite services. Individuals

living with dementia and their caregivers will also have

access to a 24/7 support line. The GUIDE Model is

unique in that it incentivizes providers to incorporate

both the person with dementia and the caregiver

(or caregivers) into the collaborative, multidisciplinary

service approach. Critically, CMS will include policies

to ensure that underserved communities have equal

access to GUIDE Model services to address disparities

in access to and quality of dementia care.

692

Caregiving

Workforce

More than 1 million additional

direct care workers will be needed

between 2021 and 2031 — more

new workers than in any other single

occupation in the United States.

As the prevalence of Alzheimer’s disease and other

dementias increases, so does the need for more members

of the paid workforce to be knowledgeable and skillful

about working with a diverse population of people living

with dementia as well as with their families.

693, 694

A dementia-capable workforce addresses the

full arc of care — from identifying a concern

to screening, detecting and diagnosing within

clinical settings, to treating, monitoring and

caring for those living with these diseases in

residential or home and community-based

settings. This workforce includes, but is not

limited to, primary care physicians (PCPs) and

advanced practice clinicians; specialists, such

as geriatricians, neurologists and psychiatrists;

other licensed providers, such as registered

nurses, psychologists, therapists and social

workers; members of the direct care workforce,

including personal care aides, home health

aides and nursing assistants; and the broader

community-based workforce who interact

with the public and help meet the needs of

people living with dementia, such as police

oﬃcers, bank tellers, librarians, hairdressers,

bus drivers and others.

Screening, Detecting and Diagnosing

Workforce

Improving dementia screening, detection and diagnosis

is a high priority.

267, 695-697

A recent study of Medicare

beneficiaries found that only about 8% of expected mild

cognitive impairment (MCI) cases are diagnosed on

average, suggesting there may be as many as 8 million

people with undiagnosed MCI (acknowledging that not

all individuals with MCI develop dementia; see Overview,

page 4).

271, 698

Among over 200,000 clinicians and

practices surveyed, only 0.1% had diagnosis rates within

the expected range, likely due to limited expertise and

confidence and other factors discussed on the following

pages.

271

See the Special Report from 2022 Alzheimer’s

Disease Facts and Figures that examines consumers’ and

primary care physicians' perspectives on awareness,

diagnosis and treatment of MCI, including MCI due to

Alzheimer’s disease.

697

With early detection of cognitive impairment comes

opportunities for individuals and their families to plan for

future care and to participate in clinical trials or be

treated with FDA-approved disease-modifying therapies.

Suboptimal detection and diagnosis of dementia,

conversely, reduces the ability of individuals and their

families to make informed decisions, access appropriate

medical care, create financial and legal plans, and pursue

services and support. Timely and accurate detection is

particularly important considering that dementia is

progressive. While more evidence is needed to support

screening of asymptomatic individuals,

699

it is generally

accepted that clinically significant cognitive concerns that

arise in the primary care setting should be followed by an

evaluation for cognitive impairment using a standardized

and validated assessment.

700-702

See the Special Report

from 2019 Alzheimer’s Disease Facts and Figures that

explores the state of cognitive assessment in the primary

care setting and identifies potential solutions for existing

barriers to widespread adoption of assessment in primary

care settings.

267

Health care professionals who are involved in screening

for, detecting, and/or diagnosing Alzheimer’s and other

dementias include PCPs (e.g., family medicine and internal

medicine physicians), advanced practice clinicians (e.g.,

nurse practitioners and physician assistants), and specialists

such as geriatricians (who specialize in caring for older

adults), neurologists (especially geriatric and cognitive

neurologists), neuropsychologists, geropsychologists and

geriatric psychiatrists. However, limited skill and confidence

in diagnosing dementia,

703, 704

time constraints among

PCPs during routine office visits

705, 706

and a widespread

shortage of geriatricians and other specialists has resulted

in delayed screening, detection and diagnosis of Alzheimer’s

disease and other dementias.

Workforce

Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).60

The 10% column is how many geriatricians will be needed to serve only those 65 and older projected to have Alzheimer’s dementia in 2050,

assuming that the percentage of people age 65 and older with Alzheimer’s dementia remains at approximately 10%. The 30% column is how many

geriatricians will be needed to serve the 30% of people age 65 and older who need geriatrician care, regardless of whether they have dementia.

The number of practicing geriatricians in 2021 was provided by IQVIA and includes physicians with geriatrics as either their primary or secondary

specialty. Calculations assume that each geriatrician can care for up to 700 patients.

725

The underlying state-by-state estimates of the 2050

population age 65 and older were provided by Claritas Pop-Facts 2020.

Number of Geriatricians in 2021 and Projected Number of Geriatricians Needed in 2050 by State

Montana 9 59 177

Nebraska 23 84 253

Nevada 43 158 474

New Hampshire 33 72 217

New Jersey 206 398 1,193

New Mexico 27 93 279

New York 568 818 2,454

North Carolina 158 535 1,606

North Dakota 12 34 103

Ohio 163 537 1,611

Oklahoma 26 171 512

Oregon 69 232 695

Pennsylvania 273 601 1,803

Rhode Island 33 49 147

South Carolina 66 288 865

South Dakota 15 44 131

Tennessee 37 343 1,029

Texas 333 1,255 3,766

Utah 25 114 341

Vermont 9 32 95

Virginia 113 406 1,218

Washington 126 399 1,198

West Virginia 16 83 250

Wisconsin 83 273 820

Wyoming 3 26 79

U.S. Total 5,170 15,417 46,252

Alabama 33 228 684

Alaska 8 31 92

Arizona 92 363 1,089

Arkansas 55 134 402

California 587 1,676 5,029

Colorado 96 289 867

Connecticut 91 166 497

Delaware 18 55 165

District of Columbia 36 28 83

Florida 362 1,365 4,096

Georgia 100 492 1,476

Hawaii 63 64 192

Idaho 8 87 261

Illinois 212 517 1,551

Indiana 66 299 897

Iowa 26 142 426

Kansas 20 121 364

Kentucky 39 207 622

Louisiana 31 198 595

Maine 36 71 213

Maryland 146 288 865

Massachusetts 214 347 1,042

Michigan 164 465 1,394

Minnesota 84 270 811

Mississippi 23 124 373

Missouri 91 283 849

Number of Number of

Geriatricians Geriatricians

Number of Needed in 2050 Needed in 2050

Geriatricians to Serve 10% of to Serve 30% of

State in 2021 Those 65 and Older Those 65 and Older

Number of Number of

Geriatricians Geriatricians

Number of Needed in 2050 Needed in 2050

Geriatricians to Serve 10% of to Serve 30% of

State in 2021 Those 65 and Older Those 65 and Older

Table

Primary Care Physicians

PCPs are most likely to make the initial diagnosis of

dementia.

707, 708

A study of Medicare beneficiaries found

that 85% of people living with dementia were diagnosed by

providers who do not specialize in dementia (e.g., PCP,

emergency medicine physician, nurse practitioner, clinical

psychologist). Among the remaining 15% diagnosed by a

provider who specializes in dementia, 47% were diagnosed

by a psychiatrist, including geriatric psychiatrists and

neuropsychiatrists, 44% by a neurologist and 9% by

a geriatrician.

709

PCPs are well-situated to detect dementia because they

often have long-standing relationships with patients and

may witness clinical manifestations of cognitive decline —

both overt functional and communication changes and

subtle signs, such as irregularities in medication or

appointment adherence, loss of control of chronic disease,

weight loss, or increase in emergency room visits or

hospitalizations. Even though the vast majority of initial

dementia diagnoses are made by PCPs, studies have found

that diagnosis is delayed until moderate or advanced stages

in 50% or more patients with Alzheimer’s,

710, 711

with greater

delays among individuals from racial and ethnic minority

groups.

712-715

It is important to reiterate that many people

living with dementia never receive a diagnosis in the

primary care setting (see Prevalence section). During these

delays or lack of diagnosis, people living with dementia

could otherwise have been enrolled in potentially life-

changing clinical trials of new treatments, begun taking

currently approved treatments, receiving emotional

support through a support group of others living with

dementia, and started planning for financial, caregiving and

accommodation changes they may experience as their

condition progresses.

If a person shows signs of cognitive impairment during a

routine doctor’s visit, Medicare covers a separate visit to

assess the person’s cognitive function and develop a care

plan.

716, 717

As of January 1, 2024, Medicare reimbursed

approximately $268 to physicians and other eligible billing

practitioners for providing a comprehensive clinical visit

that results in a written care plan (current procedural

terminology code 99483; rate may be geographically

adjusted).

716, 718-720

Although screening is now a

reimbursable service by Medicare,

716

PCPs experience

numerous barriers to detecting cognitive impairment and

diagnosing dementia.

267

For instance, commonly used

cognitive assessments take time and training to administer,

interpret, document and follow up on, which makes them

hard to use in a busy practice setting.

704, 721

Furthermore,

the next steps following detection can be seen as a barrier

as many PCPs report low confidence disclosing a dementia

diagnosis and providing post-diagnostic care.

704, 722

Even if

dementia is diagnosed, providers sometimes wait to

disclose this information to the patient due to diagnostic

uncertainty, time constraints, stigma and fear of causing

emotional distress. The U.S. Government Accountability

Office (GAO) found that use of the cognitive assessment

and care plan service in traditional fee-for-service

Medicare tripled from 2018 through 2022. However, use of

the service was relatively low among Medicare beneficiaries

diagnosed with a cognitive impairment; GAO estimated that

in 2021, the most recent year of data available, only 2.4% of

beneficiaries with a dementia diagnosis received the service

through traditional Medicare.

723

Among PCPs surveyed by the Alzheimer’s Association in

2019, nearly 40% reported that they were “never” or “only

sometimes” comfortable making a diagnosis of Alzheimer’s

or another dementia.

703

More than 25% of PCPs reported

being “never” or “only sometimes” comfortable answering

patient questions about Alzheimer’s or other dementias,

and 50% did not feel adequately prepared to care for

individuals who had been diagnosed. Given this discomfort

and uncertainty, almost one-third of PCPs in the survey

reported referring patients to specialists; however, most

PCPs (55%) reported that there were not enough

specialists (e.g., geriatricians) in their area to meet the

demand.

703

See the Special Report from 2020 Alzheimer’s

Disease Facts and Figures that examines the gaps and

projected shortages in specialty care for Alzheimer’s and

other dementias.

724

Geriatricians and Other Specialists

There is a particular need for geriatricians to screen for,

detect, and diagnose possible dementia. Geriatricians are

family physicians or board-certified internists who are

specially trained to evaluate and manage the unique health

care needs and treatment preferences of older adults.

Up to 30% of people age 65 and older are estimated to

need a geriatrician.

725

There were approximately 5,170 to

7,454 geriatricians in the United States in 2021, depending

on the source of the estimate,

726, 727

indicating a sizable

and potentially consequential shortage relative to need.

Indeed, the National Center for Health Workforce Analysis

(NCHWA) determined that there was already a shortage of

geriatricians a decade ago,

728

and the projected increase in

demand for geriatricians by 2050 is expected to far exceed

the supply in every region of the United States.

725, 728, 729

Table 13 shows state-by-state projections for the number

of geriatricians needed in 2050, using December 2021

data from IQVIA as a starting point.

727

If things continue at

the current pace, the United States will have to nearly

triple the number of geriatricians who were practicing in

2021 to effectively care for the approximately 10% of

those 65 and older who are projected to have Alzheimer's

dementia in 2050. The number must increase nearly nine

Workforce

Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

times to have enough geriatricians to care for the

approximately 30% of the population age 65 and older who

will need geriatrician care.

725

These shortages will affect states differently. For example,

Hawaii and Washington, D.C., have almost enough or more

than enough geriatricians (respectively) to match the

approximately 10% of those age 65 and older projected to

have Alzheimer’s dementia in 2050. In contrast, 12 states

need to at least quintuple the number of practicing

geriatricians by 2050 to care for those 65 and older

projected to have Alzheimer’s dementia, or increase the

number by at least 13 times to care for the 30% of the

population age 65 and older projected to need geriatrician

care. Two states, Tennessee and Idaho, will need to increase

the number of geriatricians by at least nine times just to

meet the care needs of those projected to have

Alzheimer’s dementia in 2050, or by at least 29 times to

meet the needs of all those age 65 and older who are

projected to need geriatrician care in 2050.

While the shortage of geriatricians and other specialists

extends nationwide, it appears to be most acute in rural

settings — with many rural counties facing a shortage of

health care providers overall.

730, 731

For instance, according to

the 2019 Alzheimer’s Association survey, 44% of PCPs in

large cities and 54% in suburban areas near large cities

reported that there were not enough specialists in their

area, while 63% of PCPs in small cities or towns and 71%

of PCPs in rural areas reported the same.

703

Another

indicator of the growing shortage of geriatricians is that,

in 2023, there were 411 geriatric medicine fellowship

positions available, but more than half (234) went unfilled.

732

The shortage of specialists extends to neurologists as well.

The National Center for Health Workforce Analysis

(NCHWA) projected that there will be a shortfall of

neurologists by 2025, but suggested that the growing

number of physician assistants in neurology could help

address this workforce gap.

733

Twenty U.S. states have

already been identified as “dementia neurology deserts,”

meaning they are projected to have fewer than 10

neurologists per 10,000 people with dementia in 2025.

734

The shortage of geriatricians and other relevant specialists

has been attributed to a combination of factors, including

growth in demand due to population aging; a smaller

percentage of working aged adults; substantively lower pay

for geriatricians and neurologists compared with many other

specialist physicians; an inadequate number of clinician

educators with relevant specialties on the faculties of health

professional schools; limited availability of incentives to

choose these specialties, such as loan forgiveness programs;

and the insufficient respect and recognition accorded to

geriatricians and related specialists.

735, 736

Many of these

factors are modifiable and must be addressed in order to

increase the number of providers available to provide

specialized dementia diagnosis and care. Moreover, beyond

increasing the supply of dementia specialists, geriatric care

principles should be integrated across all health care

professionals' educational curricula to ensure widespread

delivery of age-friendly care.

Medical Treatment and Care Team Workforce

As well as screening for, detecting and diagnosing

dementia, PCPs are responsible for managing treatment

for people living with dementia.

737

Even so, dementia care

is inadequately covered in health care training programs,

both in curricula and in opportunities for clinical practice.

738

Advanced practice providers, including physician

assistants and nurse practitioners, also play key roles in

treatment for people living with dementia. However,

there is limited specialization in caring for older adults

among these advanced practice roles, likely for many of

the same reasons cited for the shortages of geriatricians

and neurologists. In 2022, there were 355,000 nurse

practitioners licensed in the United States, up from 91,000

in 2010, but less than 1% had a certification in gerontology,

6.1% had a certification in gerontology acute care, and

8.9% had a certification in gerontology primary care.

739, 740

Also, less than 700 geriatric psychiatrists were certified by

the American Board of Psychiatry and Neurology (ABPN)

in the last decade (from 2012 to 2020)

741

and over half of

geriatric psychiatrists certified by the ABPN are

concentrated in just seven states (2015).

742

As of 2018, less than 1% of physician assistants were

certified in geriatric medical care. Although this figure

represents a nearly 400% increase in the absolute number

of physician assistants specializing in geriatric care since

2013 (indicating a positive trend),

743

significant gaps remain

in the capacity of this workforce to support older adults

living with dementia and other chronic health concerns.

Registered nurses, licensed practical nurses, licensed

psychologists and licensed therapists comprise other

critical segments of the dementia care workforce,

providing a range of nursing, rehabilitation and supportive

services in community settings, skilled nursing homes and

other settings. These services include medication

administration, intravenous injections, wound care,

catheter care, physical therapy, occupational therapy,

behavioral consultation and much more. In addition, social

workers assist with care navigation and management, and

licensed clinical social workers and psychologists may

provide therapeutic services to people living with dementia

and their caregivers.

Specialization in caring for older adults, however, remains

limited across these occupational groups as well. For

instance, a survey of Masters of Social Work students who

63Workforce

Created from data from Projections Managing Partnership. Projections Central: Long-Term Occupational Projections (2020-2030).

Available at: https://www.projectionscentral.org/Projections/LongTerm. Accessed January 17, 2024.

Expected Home Health and Personal Care Aide Job Growth, 2020-2030

Percentage

Increase

State 2020 2030 2020-2030

Alabama 21,700 25,910 19.4

Alaska 6,270 7,130 13.7

Arizona 72,920 117,740 61.5

Arkansas 21,900 28,350 29.5

California 766,000 985,800 28.7

Colorado 36,890 49,220 33.4

Connecticut 44,180 53,250 20.5

Delaware 8,430 11,780 39.7

District of Columbia 12,120 15,180 25.2

Florida 76,140 93,270 22.5

Georgia 44,060 60,350 37.0

Hawaii 9,290 12,270 32.1

Idaho 17,400 20,640 18.6

Illinois 99,460 118,600 19.2

Indiana 42,200 55,720 32.0

Iowa 23,880 31,580 32.2

Kansas 25,710 30,110 17.1

Kentucky 22,230 30,130 35.5

Louisiana 37,900 44,160 16.5

Maine 17,380 18,710 7.7

Maryland 42,560 56,790 33.4

Massachusetts 109,430 139,560 27.5

Michigan 71,750 89,820 25.2

Minnesota 107,500 133,420 24.1

Mississippi 19,130 25,200 31.7

Missouri 75,960 86,160 13.4

Percentage

Increase

State 2020 2030 2020-2030

Montana 7,190 9,670 34.5

Nebraska 12,500 15,210 21.7

Nevada 15,830 23,860 50.7

New Hampshire 8,410 10,970 30.4

New Jersey 59,610 76,930 29.1

New Mexico 32,360 40,750 25.9

New York 510,870 710,570 39.1

North Carolina 65,150 82,070 26.0

North Dakota 6,790 8,540 25.8

Ohio 95,560 118,540 24.0

Oklahoma 20,460 26,210 28.1

Oregon 32,330 39,960 23.6

Pennsylvania 175,140 214,740 22.6

Rhode Island 7,410 9,450 27.5

South Carolina 31,750 41,850 31.8

South Dakota 3,830 4,570 19.3

Tennessee 31,470 44,740 42.2

Texas 320,780 418,500 30.5

Utah 17,080 22,440 31.4

Vermont 7,770 10,310 32.7

Virginia 56,390 73,160 29.7

Washington 63,300 80,760 27.6

West Virginia 16,470 21,370 29.8

Wisconsin 77,810 92,320 18.6

Wyoming 3,750 5,020 33.9

U.S. Total 3,470,700 4,600,600 32.6

Number in 2020

and Projected Number

Needed in 2030

Number in 2020

and Projected Number

Needed in 2030

Table

64 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

graduated from 2017 to 2019 found that only 4.2% were

specializing in aging or gerontology.

744

Despite these low

percentages, between 20% to 48% of social work students

have high interest in working with older adults.

745-749

Since

the social work profession has a broad scope, student

interest may focus on social problems rather than age-based

populations.

750

Other reports indicate that less than 1% of

registered nurses are certified in geriatrics

751, 752

and only

1.2% of psychologists specialize in geropsychology.

753

Collaborative Workforce Models for

Dementia Care Management

Several decades of research supports the value of

collaborative primary care models that bring different health

professionals together, such as social workers, registered

nurses and non-clinical care managers, in addition to

physicians and advanced practice providers, to care for

people living with dementia.

754, 755

Researchers and

practitioners have identified eight essential elements of

comprehensive dementia care to improve outcomes and

lower costs: treatment of related conditions, coordination of

care, continuous monitoring and assessment, ongoing care

plan, psychosocial interventions, self-management, caregiver

support and medication management.

756

These collaborative

and comprehensive models have been associated with a

range of benefits including reduced behavioral symptoms,

improved function and quality of life, decreased caregiver

burden, and lower health care costs related to

hospitalizations, emergency department visits and other

outpatient visits.

755, 757, 758

As one collaborative dementia care example, the

Alzheimer’s and Dementia Care (ADC) Program is a health

systems-based model in which clinical providers with

extensive training in dementia care, known as dementia

care specialists (DCSs), co-manage care with the PCP. DCSs

provide comprehensive care addressing medical, behavioral

and social aspects of dementia through the development of

care plans tailored to the needs and goals of each patient

living with dementia and their caregiver. In this

co-management model, the PCP is responsible for the

patient’s primary care needs but shares responsibility for

the dementia-related aspects of care with the DCS,

including reviewing and providing input on the dementia

care plan. The care plan is then implemented by a team, led

by the DCS, that includes family members, other health

professionals and community-based organizations.

625

This

model was found to reduce nursing home admissions for

participating Medicare beneficiaries. The findings were

$601 per patient per quarter ($2,404 per year) in savings,

while the cost of running the program was $317 per patient

per quarter ($1,268 per year), for a net savings of $284 per

patient per quarter ($1,136 per year) for Medicare.

759

As a second example, the Care Ecosystem — a

collaborative, team-based dementia care program utilizing

telehealth that involved care navigators, advanced practice

nurses, social workers and pharmacists — resulted in

fewer ambulance rides, emergency department visits and

hospitalizations and lower total cost of care compared

with usual care.

760, 761

A non-academic health care delivery

organization which adopted the Care Ecosystem found that

the model can be successfully implemented and integrated

into purely clinical settings.

762

With regard to cost savings,

participation in the Care Ecosystem reduced the total cost

of care by $3,290 from 1 to 6 months post-enrollment

and by $3,027 from 7 to 12 months post-enrollment,

corresponding to a mean monthly cost reduction of $526

across 12 months.

761

An implementation toolkit for the

Care Ecosystem is publicly available at: https://memory.

ucsf.edu/sites/memory.ucsf.edu/files/wysiwyg/

CareEcosystemToolkit.pdf.

763

As further evidence of the cost-saving potential of

collaborative dementia care team models, an

interprofessional memory care clinic called the Healthy

Aging Brain Center was shown to reduce per-person

health care costs by $3,474 over a year for individuals with

memory problems, compared with those whose care was

overseen by a PCP only.

761

More than half of the cost

savings were attributed to lower inpatient hospital costs.

The average annual cost of the program was $618 per

person — indicating a nearly 6-to-1 return on investment.

See a description of the new Guiding an Improved

Dementia Experience (GUIDE) Model in the Caregiving

section on page 57 and later in the Workforce section on

page 69 to learn more about efforts to disseminate

collaborative dementia care widely.

Direct Care Workforce

The largest segment of the workforce that supports people

living with dementia is the direct care workforce.

764

Direct

care workers — who are formally classified as personal

care aides, home health aides and nursing assistants, but

known by a wide range of job titles in the field — assist

older adults and people with disabilities in private homes,

community-based settings such as adult day services and

residential care, skilled nursing homes and other settings

such as hospitals.

765

Across these settings, direct care

workers deliver the majority of day-to-day care to patients,

clients or residents living with Alzheimer’s disease and

other forms of dementia.

Direct care workers provide assistance with ADLs, such

as bathing, eating, toilet care and mobility. In home care

settings, they also support individuals with household chores,

meal preparation, attending appointments and other

instrumental activities of daily living (IADLs). Under the

supervision of licensed nurses or other health care

professionals, home health aides and nursing assistants

also perform certain clinical tasks, such as wound care,

measuring vital signs and medication administration

(depending on the setting and regulatory context).

766, 767

Beyond these distinct tasks, direct care workers play a

broader role in promoting nutrition, exercise, functional

ability, social engagement and emotional well-being for

those living with dementia. With training in active listening,

empathic response and other relevant skills, direct care

workers can reduce social isolation, provide emotional

support and, with additional training, help administer

nonpharmacological treatments — such as music and pet

therapy and person-centered bathing — to prevent or

reduce distress associated with dementia.

768-771

Direct care workers also support quality outcomes and cost

savings. Direct care workers providing in-home care enable

individuals to continue living at home and help prevent or

delay nursing home placement.

772

Across settings, they also

provide care to individuals returning from a hospital stay

and can help reduce the risk of readmission, as well as assist

with end-of-life care transitions.

773-776

Thanks to their daily

caregiving role, direct care workers are well-placed to

observe and report changes of status to clinical colleagues,

thereby helping to reduce the risk of emergency

department visits, avoidable hospitalizations and other

adverse outcomes that are disproportionately high among

people living with dementia.

777, 778

Research suggests that

with enhanced dementia-specific training, direct care

workers may also play a role in reducing inappropriate

antipsychotic prescribing for individuals living with dementia

in nursing homes.

779

Between 2012 and 2022, the number of direct care workers

increased from 3.2 million to 4.8 million due to growing

demand for long-term care.

765

Looking ahead, just over

1 million additional direct care workers will be needed

between 2021 and 2031 — more new workers than in any

other single occupation in the United States.

765

This job

growth is occurring primarily among personal care aides and

home health aides, reflecting the overwhelming preference

for “aging in place” and public policies that have expanded

access to home and community-based services.

780

This projected growth in the direct care workforce is seen

across the country. As shown in Table 14, page 63, double-

digit percentage increases in the number of home health

and personal care aides will be needed between 2020 and

2030 to meet demand in every state except Maine. (Unlike

the national workforce projections, updated state-specific

projections will not be available until mid-2024.) Twenty-one

states are expected to see a 30% to 40% increase in the size

of this workforce, while in two states (Arizona and Nevada)

the workforce is expected to increase more than 50%.

Although sizable, these employment projections fall short of

65Workforce

true workforce demand, as they do not account for the

additional workers who will be needed through the

“gray market,” meaning private-pay, usually unreported

employment arrangements. One study using a nationally

representative sample of adults found that nearly a third of

people who arrange paid care for an aging adult or person

living with dementia rely on the gray market (rather than

a home care agency or other formal care provider).

781

Although more direct care workers will be needed in the

years ahead, the long-term care field is already struggling

to fill existing direct care positions. Turnover rates are high

in this workforce — with an estimated median rate of

77% annually for direct care workers providing home

care

782

and 99% for nursing assistants in nursing homes

783

— and recruitment and retention are long-standing

challenges.

784-786

In turn, instability in the workforce and

understaffing across care settings can lead to stress, injury

and burnout among direct care workers, thereby further

contributing to turnover while also compromising care

access and quality.

787, 788

Workforce challenges are driven by persistently low

compensation and poor job conditions for direct care

workers, which are in turn underpinned by structural racial

and gender inequities (that marginalize this workforce

composed predominantly of women and people of color),

765

as well as ageism and disablism (toward the individuals

receiving care and, by extension, those providing it).

789

According to the most recent national data available, the

median wage for direct care workers is just $15.43 per

hour and, due to low wages and the high prevalence of

part-time positions, median annual earnings are less than

$24,000.

765

Research shows that, despite their complex

and critical role in supporting the health and well-being of

older adults and people with disabilities, direct care workers

earn a lower median wage than workers in other “entry-

level” occupations with similar education and training

requirements, such as janitors, retail salespersons and

customer service representatives.

790

Direct care workers also receive limited training and

professional development opportunities, another indicator

of poor job conditions. Nursing assistants in nursing homes

and home health aides employed by Medicare-certified

home health agencies are required by federal regulations

to complete at least 75 hours of entry-level training and

12 hours of annual continuing education (although many

states have set higher training requirements).

786

Care for

individuals with cognitive impairment is among the requisite

training topics for nursing assistants, but not for home

health aides. In contrast, training requirements for other

direct care workers vary by state and setting. With regards

to dementia-specific training, a 2015 review found that

only 13 states had established dementia care training

requirements for direct care workers who provide in-home

66 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Impact of COVID-19 on the Workforce

The COVID-19 pandemic has had a significant

and enduring impact on the health care workforce

and especially on the dementia care workforce,

given the disproportionately high infection and

death rates due to COVID-19 among people living

with Alzheimer’s disease and other dementias.

816

At the onset of the pandemic, the number of people

employed in health care fell from 16.2 to 14.9 million, an

unprecedented decrease of more than 8%.

817, 818

As of

October 2023, the number of people employed in the

health sector was 3.9% higher than in February 2020,

compared with 2.9% higher in all other sectors — but health

sector employment still remained below expected levels

(i.e., there were nearly 482,000 fewer jobs in October 2023

than would have been expected without the pandemic).

817, 818

Employment levels in nursing homes and community care

settings — where a significant proportion of dementia care

takes place — are still far below pre-pandemic levels and

direct care workforce shortages remain acute.

817

As of

October 2023, employment was nearly 10% lower in nursing

homes and 1.3% lower in assisted living and continuing care

retirement communities than in February 2020.

817, 818

Some of the initial job loss in health care was caused by

changes in service delivery and utilization. Elective

procedures were canceled, routine and preventive care visits

were postponed, and admissions into congregate care

settings such as nursing homes were avoided if possible.

Health care workers also had to leave their jobs to safeguard

their own or their families’ health because of illness, or for

caregiving or other reasons. As one startling example of how

COVID-19 directly impacted health care workers, more than

1.7 million COVID-19 cases had been confirmed among

nursing home staff as of October 2023 and over 3,000

nursing home staff had died from the disease.

819

Working during the COVID-19 pandemic has also taken

a significant emotional and psychological toll on the

health care workforce.

820-822

As stated by the U.S.

Surgeon General, “COVID-19 has been a fully and uniquely

traumatic experience for the health workforce, and for their

families.”

823

A systematic review of research published in the

first year of the pandemic found evidence for increased

levels of burnout, emotional exhaustion, depersonalization

and compassion fatigue among health care workers, with

nurses, women and those working directly with COVID-19

patients most impacted.

824

One survey of nearly 21,000 U.S.

health care workers in 2020 found that stress related to

workload and mental health was highest among nursing

assistants, medical assistants and social workers versus other

occupational groups, workers in inpatient versus outpatient

settings, women versus men, and Black and Latinx workers

versus White workers.

825

Researchers are now assessing

these outcomes over time; one example is the longitudinal

COVID-19 Study of Healthcare and Support Personnel

(CHAMPS), which aims to document the effects of the

pandemic on the long-term physical and mental health of

the health care workforce.

826

Participants were recruited for

the initial CHAMPS study in 2020–2021 and, if they

consented to be recontacted, were surveyed at six months’

follow-up and will be surveyed annually thereafter.

The workforce employed by home and community-based

services who assist community-dwelling older adults,

including people living with dementia and their caregivers,

such as those in adult day programs or who deliver

congregate meals, developed new strategies to provide

services and programming to maintain safety, improve

socialization and reduce isolation and loneliness during

lockdown periods. These strategies included providing

home-delivered groceries or grab-and-go meals; facilitating

virtual and remote socialization activities; engaging in

vaccine education and distribution; and deploying

technology, digital literacy and device support,

827-829

with

many of these remote and virtual activities still ongoing.

For the dementia care workforce, the trauma of caring

for those most vulnerable to COVID-19 (and related

challenges, such as social isolation) has likely been

significant.

830

Given the preexisting shortages among

different segments of this workforce, the longer-term

impact of this crisis on workforce recruitment and retention

— as well as on individual health and well-being — must be

closely monitored.

826

care. According to the same review, 44 states and the

District of Columbia had set dementia care training standards

for assisted living staff, but those regulations only pertained to

special dementia care facilities or units in 14 of those states.

791

Inadequate training for direct care workers perpetuates their

mischaracterization as “low-skill” workers, fails to prepare

them for the complexity and challenges of their role,

undermines job satisfaction and retention, and directly

impacts the provision of dementia care.

Direct care is also physically and emotionally demanding

work, which is not well-reflected in the training standards

or compensation for this workforce. As one indicator,

occupational injury data from the Bureau of Labor

Statistics show that nursing assistants in nursing homes

were nearly eight times more likely than U.S. workers

overall to experience workplace injuries in 2020 (the most

recent available year of occupation-specific data on injuries

in nursing homes).

765

These data reflect the impact of the

COVID-19 pandemic on this workforce — as COVID-19

was classified as a “workplace injury”

792

— as well as

long-standing occupational risks.

793

Comparable

occupational injury data are not available for direct care

workers in home and community-based settings due to

reporting limitations, but these workers are also exposed

to a range of occupational risks, including unsafe physical

environments, infection hazards, interpersonal violence

and more.

794

Dementia-Friendly Initiatives and the

Community-Based Workforce

The term “dementia-friendly” has become increasingly

common to describe initiatives to make local communities,

environments and health and social systems more

supportive of people living with dementia and their

caregivers.

795

Work on dementia-friendly communities

began in Japan as early as 2004, with a nationwide campaign

to better understand dementia and build supportive

community networks, which inspired growth of the

movement worldwide.

796

In the U.S., the Dementia-Friendly

America (DFA) initiative launched in 2015 and was described

as a first-of-its-kind national effort that was announced at

the White House Conference on Aging.

797

DFA was built on

the leadership of ACT on Alzheimer’s, a community-led

initiative in Minnesota that began in 2013.

798

There are other

ever-evolving dementia-friendly efforts as well that

encompass a range of settings and contexts, including

dementia-friendly care for people living in hospitals;

799-801

dementia-friendly design for nursing homes, senior centers,

and similar settings;

802-804

and dementia-friendly

neighborhood efforts to improve quality of life for local

residents.

805, 806

Research is still needed on the effectiveness

of these various dementia-friendly efforts.

67Workforce

Looking to the Future

In 2020, the American Public Health Association (APHA)

identified “strengthening the dementia care workforce” as

a public health priority.

831

“Continued failure to strengthen

the dementia care workforce,” according to the APHA, “will

increasingly limit the ability of people living with dementia to

access quality services and supports, adding to health, social

and economic burdens for individuals, families and society.”

This section outlines four emergent areas that will

strengthen the dementia care workforce into the future.

Health Care Workforce Development

First, the health care workforce must expand overall to

meet the needs of the rapidly growing population of older

adults, who are at the highest risk of developing Alzheimer’s

disease and other dementias (see Prevalence section,

page 21).

832

More PCPs, geriatricians, physician assistants,

nurse practitioners, psychologists, therapists, social workers,

direct care workers, other health care workers and

community-based workers who are specifically trained in

caring for people living with dementia will be critically

needed in the years ahead.

One important effort to build the health care workforce

is the Geriatrics Workforce Enhancement Program

(GWEP) funded by the Health Resources and Services

Administration, which comprises a network of 48 GWEPs

across most U.S. states and two territories.

833

The goals of

this program are to educate and train the health care

workforce to provide value-based care for older adults in

integrated geriatrics and primary care models and to deliver

community-based programs that improve health outcomes

for older adults. One particular goal for the GWEPs is to

provide dementia training to a broad range of health care

professionals, educators, individuals and families.

To support people living with dementia in their homes and

communities, as well as their family caregivers, greater

dementia-related knowledge, skills and competencies are

needed in the workforce beyond health care. For instance,

dementia gatekeeper programs have had some success

identifying and supporting people with dementia by training

postal workers, bank tellers, ministers and other personnel

to identify signs of cognitive impairment in older adults and

provide appropriate direction to services.

807

Additional

workforces that play a role in creating dementia-friendly

environments include librarians who provide supportive

services and programming;

808

architects and others who

design floor plans, landscapes, soundscapes and sonic

environments;

802, 809

adult protective service workers who

handle elder abuse cases;

810, 811

police officers and law

enforcement agencies that interact with the public;

812, 813

and hairdressers,

814

bus drivers and building superintendents

among others.

815

68 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Additionally, recognizing the need for expanded training for

professionals who serve older adults, the Substance Abuse

and Mental Health Services Administration (SAMHSA) has

funded a Center of Excellence for Behavioral Health

Disparities in Aging and a Center of Excellence for Building

Capacity in Nursing Facilities to Care for Residents with

Behavioral Health Conditions.

In 2023, the National Institute on Aging funded the National

Dementia Workforce Study (NDWS) under the leadership of

a team of experts in survey research, health workforce

research, and clinical care of people living with dementia.

The NDWS will build a data infrastructure to inform efforts

to strengthen the workforce of clinicians and other care

providers required by the growing population of people

living with dementia in the United States.

834

Dementia Training and Specialization

Targeted dementia training and specialization among PCPs

and across the health care workforce is also needed,

835, 836

including training to address PCPs’ lack of confidence in

diagnosing dementia and communicating that diagnosis,

as discussed earlier. Training in cultural and linguistic

competency is also needed to help the dementia care

workforce better support individuals from diverse

populations, including individuals from various racial and

ethnic and sexual and gender minority groups. Moreover,

language-concordant and culturally tailored resources and

referrals are important for overcoming misunderstandings,

biases, misdiagnoses and related disparities experienced by

people of color and other individuals in minority populations

who are living with dementia and by their families.

837-842

One successful training model is the Alzheimer’s and

Dementia Care ECHO® Program, which pairs PCPs with

multidisciplinary specialist teams through telementoring to

develop their knowledge and confidence in dementia care.

According to an evaluation of the program, which was

launched in 2018 by the Alzheimer’s Association, 94% of

surveyed providers participating in the program reported

making changes in their delivery of dementia care due to

the program and 87% reported higher job satisfaction.

843

Another burgeoning program is Dementia Care Aware,

a state-wide program in California that equips PCPs with

information and tools to successfully administer cognitive

health assessments and determine appropriate next steps

for patients.

844

Once they have completed the online

training, PCPs can receive $29 for providing an annual

screening for cognitive impairment (current procedural

terminology code 1494F) for California Medicaid patients

who are fee-for-service and do not have Medicare.

845

If the initial screening leads to concerns regarding

cognitive impairment, providers can receive $246 for

conducting a cognitive assessment and providing care

plan services (current procedural terminology code 99483)

for California Medicaid patients (Medicare reimburses

approximately $266).

716, 845, 846

The Gerontological Society of America’s Kickstart, Assess,

Evaluate, Refer (KAER) model provides another example of

how to expand the workforce to better detect and manage

dementia.

847

Among other strategies, this model suggests

that non-clinical office staff are well-positioned to

participate in the primary care team’s efforts to detect

cognitive impairment. Receptionists or schedulers, for

example, can take note when patients miss their

appointments, show up at the wrong time, defer to family

members while completing paperwork or answering

questions, or have difficulty following care plans.

Nurse practitioners, physician assistants and other care

providers can also play a greater role in dementia

care delivery, particularly for rural and underserved

communities.

743, 848

With training, support and recognition,

direct care workers can also provide more tailored care for

people living with dementia, for example, by implementing

non-pharmacological interventions to mitigate distress;

observing and recording changes to clinical team members;

and educating and supporting family members.

849

Furthermore, as new therapies for Alzheimer’s and other

dementias develop, the composition and size of the dementia

care workforce must continue to evolve. For example, the

U.S. Food and Drug Administration recently approved two

drugs for the treatment of Alzheimer’s that are delivered

through intravenous infusion and require careful

monitoring of patients for a serious potential side effect

called amyloid-related imaging abnormalities (ARIA, for

more information, see the Overview, page 4). Ensuring the

health of individuals while they receive these drugs requires

an expanded workforce including infusion nurses, radiologists

and radiology technicians with special training in recognizing

ARIA, and specialists with expertise in managing ARIA if it

occurs. Neuropsychologists and other health professionals

are also needed to evaluate whether individuals are

benefiting from the treatments, as those who do not

experience improvements in cognitive skills and the ability to

perform ADLs may be advised to discontinue treatment.

Many people living with dementia move to a nursing home

or other group home setting because there are inadequate

community-based services and supports in their local

area.

850

To create dementia-friendly communities that

support people to age in place, it will be important to also

bolster the dementia knowledge and skills of the broader

community-based workforce — such as postal workers,

bank tellers, ministers, church leaders, librarians, police

officers, building superintendents, bus drivers and hair

dressers.

483, 624, 807, 808, 812-815

For instance, financial advisors

are on the frontline with their clients. Research conducted

by Bank of America found that Alzheimer’s dementia was the

most feared condition in later life among the bank’s clients

across all ages and genders. Given this insight, Bank of

America created training programs for their financial

advisors on both Alzheimer’s dementia and caregiving.

851

Payment Models to Support the Dementia Care Workforce

Alternative payment models may be needed to scale-up the

delivery of collaborative, comprehensive and innovative

dementia care.

758, 852, 853

One development in this area is that

since 2017 Medicare reimburses physicians, nurse

practitioners, physician assistants and nurse specialists for

health care visits that result in a comprehensive dementia

care plan. Reimbursement requires cognition-focused

evaluation, identification of caregiver needs, and

development, revision or review of an advance care plan.

Early uptake of this benefit has been limited; a study using a

20% nationwide random sample of eligible fee-for-service

Medicare beneficiaries’ claims data found that only 0.65%

had received this benefit in the first two years.

854

The

authors of this study concluded that providers may be

insufficiently aware of these billing codes, especially in

smaller practices and rural areas, and/or may be billing for

similar services under different codes. In the future,

providers could be better informed about these codes, and

the codes could be revised to include other professionals

such as social workers and psychologists as billing entities.

Another development in the area of payment models is

the nationwide voluntary GUIDE (Guiding an Improved

Dementia Experience) Model, announced by CMS in

2023.

692, 855

Through the GUIDE Model, participating

organizations will offer dementia care programs that provide

ongoing, longitudinal care and support for dually eligible

Medicare and Medicaid people living with dementia and their

caregivers, through an interdisciplinary team. Each team

must include a knowledgeable and skilled care navigator to

help people living with dementia and their caregivers access

clinical and non-clinical services and supports, such as

person-centered assessments and care plans, care

coordination, caregiver training and education, meals and

transportation through community-based organizations,

and 24/7 access to a support line. CMS will test an

alternative payment for participating organizations, who

must be Medicare Part B enrolled providers/suppliers and

eligible to bill for Medicare Physician Fee Schedule services.

To address racial health disparities and inequities in dementia

care, CMS will actively seek out safety-net organizations

that provide care to underserved communities to participate

in the GUIDE Model and will provide financial and technical

supports to ensure they can develop their infrastructure,

improve their workforce and care delivery capabilities, and

participate successfully.

855

Financing and other public policy reforms are also needed

to strengthen and stabilize the direct care workforce. On

a hopeful note, the federal government and states are taking

unprecedented action to improve job quality and bolster

this workforce, particularly through Medicaid, including by

overhauling training and credentialing systems, designing

new career development opportunities, implementing

reimbursement rate increases tied to increased

compensation, developing new recruitment campaigns and

pipeline programs and more.

856, 857

The challenge will be to

sustain these investments into the future, as the need for

direct care services continues to escalate.

Technology to Augment Dementia Care Delivery

Major advances in technology are optimizing the time and

effectiveness of the dementia care workforce. As one

example, e-learning programs can greatly increase access

to dementia care training, although evidence suggests

that the effectiveness of such programs relies on the

relevance of the content and the inclusion of interactive

learning strategies.

858

Technology is also helping to improve access to care for

people living with dementia, especially for those in rural

areas and those with mobility limitations.

859

A randomized

clinical trial of more than 1,500 individuals across urban and

rural areas in California, Nebraska and Iowa to determine

whether telephone- and internet-based delivery of the Care

Ecosystem (a program described on page 64) was effective

in improving outcomes found that the intervention resulted

in better quality of life, reduced emergency department

visits and decreased caregiver depression and burden.

760

A systematic review of telehealth for dementia care,

including routine care, cognitive assessment and

rehabilitation, found that telehealth delivered results similar

to those of in-person services.

860

More research is needed

to identify the strengths and weaknesses of telehealth and

how it can be utilized appropriately in the diagnosis and

treatment of individuals living with dementia, as well as in

supporting their caregivers.

Assistive, therapeutic and remote monitoring technologies,

which range from smart home devices to automated

medication prompts to robotic animals and devices that

support personalized activities and much more, can be used

to augment the role of the dementia care workforce.

861

As with telehealth, more research is needed to understand

the efficacy of these myriad different technologies and to

address concerns and unintended consequences related to

privacy, autonomy and interpersonal interactions. As the

2020 report of The Lancet Commission on dementia

prevention, intervention, and care concluded, “technology

is not a replacement for human contact.”

107

Workforce

Use and Costs of Health Care,

Long-Term Care and Hospice

In 2024, health and long-term

care costs for people living with

Alzheimer’s and other dementias

are projected to reach $360 billion.

The costs of health care and long-term care for

individuals with Alzheimer’s or other dementias are

substantial, and dementia is one of the costliest

conditions to society.

862

Total Cost of Health Care and Long-Term Care

Table 15 reports the average annual per-person

payments for health care and long-term care services for

fee-for-service (i.e., traditional) Medicare beneficiaries

age 65 and older with and without Alzheimer’s or other

dementias based on data from the 2018 Medicare Current

Beneficiary Survey.

A13

Unless otherwise noted, cost and

health care utilization statistics for Medicare beneficiaries

are for fee-for-service Medicare and do not represent

those enrolled in Medicare Advantage.

A14

Total per-person

health care and long-term care payments in 2023 dollars

from all sources for Medicare beneficiaries with

Alzheimer’s or other dementias were nearly three times as

great as payments for other Medicare beneficiaries in the

same age group ($43,644 per person for those with

dementia compared with $14,660 per person for those

without dementia).

A15, 863

Despite having Medicare and other sources of financial

assistance, individuals with Alzheimer’s or other

dementias and their family members still incur high

out-of-pocket costs. These costs are for Medicare

deductibles, copayments and coinsurance; other health

insurance premiums, deductibles, copayments and

coinsurance; and services not covered by Medicare,

Medicaid or other sources of support. On average,

Medicare beneficiaries age 65 and older with Alzheimer’s

or other dementias paid $10,289 out of pocket annually

for health care and long-term care services not covered

by other sources (Table 15).

863

One group of researchers

found that out-of-pocket and informal caregiving costs

for a family member with dementia total $203,117 in

2016 dollars ($240,046 in 2023 dollars) in the last seven

years of life, compared with $102,955 in 2016 dollars

($121,674 in 2023 dollars) for those without dementia.

582

However, informal caregiving costs in the last seven years

of life were considerably higher for households with a

family member with dementia living in the community

compared with households with a family member with

dementia living in a nursing home ($231,730 versus

$165,910 in 2016 dollars [$273,862 versus $196,075

in 2023 dollars]), due to Medicaid covering the cost of

nursing home care for many individuals.

582

Total payments in 2024 (in 2024 dollars) for all

individuals with Alzheimer’s or other dementias

are estimated at $360 billion (Figure 13), not

including the value of informal caregiving

that is described in the Caregiving section.

Medicare and Medicaid are expected to cover

$231 billion, or 64%, of the total health care

and long-term care payments for people with

Alzheimer’s or other dementias. Out-of-pocket

spending is expected to be $91 billion, or

25% of total payments.

A11

For the remainder

of this section, costs are reported in 2023

dollars unless otherwise indicated.

A12

With

the exception of the section, “The COVID-19

Pandemic and Health Care Utilization and

Costs,” data reported in this section reﬂect

patterns of use before the pandemic. It is

unclear at this point what long-term eﬀect the

pandemic will have on these patterns.

*Data are in 2024 dollars. “Other” payment sources include private

insurance, health maintenance organizations, other managed care

organizations and uncompensated care. The sum of individual dollar

amounts does not equal the total cost due to rounding. Before

rounding, Medicare and Medicaid costs totaled $231 billion.

Created from data from the Lewin Model.

A11

Medicare

$164 B, 45%

Total cost:

$360 Billion (B)

Medicaid

$68 B, 19%

Out of pocket

$91 B, 25%

Other

$38 B, 11%

Distribution of Aggregate Costs of Care by Payment

Source for Americans Age 65 and Older with Alzheimer’s

or Other Dementias, 2024*

71Use and Costs of Health Care, Long-Term Care and Hospice

Figure

Researchers have evaluated the additional or

“incremental” health care, residential long-term care

and family caregiving costs of dementia (that is, the

costs specifically attributed to dementia when

comparing people with and without dementia who have

the same coexisting medical conditions and demographic

characteristics).

431, 862, 864, 865

These studies have used

different time horizons, ranging from lifetime costs

(i.e., costs between the time of diagnosis and death) to

annual costs. The lifetime total cost of care, including

out-of-pocket expenses, Medicare and Medicaid

expenditures, and informal caregiving is estimated at

$321,780 per person with Alzheimer’s dementia in

2015 dollars ($394,683 in 2023 dollars), more than

twice the estimated lifetime cost for individuals without

Alzheimer’s dementia).

430

Another group of researchers

found that lifetime total costs were three times higher

for women compared with men with Alzheimer’s

dementia, due to women having a longer duration of

illness and spending more time in a nursing home.

866

Annual incremental health care and nursing home costs

for individuals with dementia (that is, the additional costs

compared with those for individuals without dementia)

are estimated at $28,501 per person per year in 2010

dollars ($40,209 in 2023 dollars).

A16, 862

The majority of

incremental costs have been attributed to informal care

and out-of-pocket costs, rather than medical care and

nursing home costs paid by Medicare or Medicaid.

430, 866, 867

The incremental five-year cost of care for dementia paid

by Medicare has been estimated at nearly $16,000 per

person in 2017 dollars ($22,573 in 2023 dollars), with

nearly half of these costs incurred in the year after

diagnosis and 87% concentrated in the two years after

diagnosis.

867, 868

However, these estimates include costs

for individuals who died during the five-year time period,

and the incremental costs for individuals who survive at

least five years after diagnosis are even higher.

Several groups of researchers have specifically examined

out-of-pocket costs and found that individuals with

Alzheimer’s or other dementias and their families incur

substantially higher out-of-pocket costs compared with

individuals without Alzheimer’s. Although incremental

Medicare expenditures peak in the year after diagnosis and

decrease in the subsequent four years, out-of-pocket costs

have been shown to increase over time, from $3,104 in

the first two years after diagnosis to $3,730 in years three

to four after diagnosis, to $3,934 in years seven to eight

after diagnosis (in 2017 dollars; $3,579, $4,300 and

$4,535 in 2023 dollars).

869

Higher out-of-pocket costs for

Alzheimer’s and other dementias have been attributed to

nursing home care, home health care and prescription drug

payments.

870, 871

Furthermore, individuals with Alzheimer’s

dementia spend 12% of their annual income on out-of-

pocket health care services on average, excluding nursing

home and informal care, compared with 7% for individuals

without Alzheimer’s dementia.

871

Another perspective to examine incremental costs for

individuals with Alzheimer’s and other dementias is

through end-of-life costs. A recent systematic review of

end-of-life costs for individuals with dementia reported

that costs were especially high during the last month of

life, even compared with monthly costs over the last year

of life.

872

Researchers comparing end-of-life costs in the

last five years of life for individuals with and without

dementia found that the total cost was $287,038 per

person for individuals with dementia in 2010 dollars and

$183,001 per person for individuals without dementia

($404,949 and $258,175, respectively, in 2023 dollars),

a difference of 57%.

873

Out-of-pocket costs represent

a substantially larger proportion of total wealth for

those with dementia than for people without dementia

(32% versus 11%).

72 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Payment

Source

Beneﬁciaries

with Alzheimer’s

or Other

Dementias

Beneﬁciaries

without

Alzheimer’s or

Other Dementias

Medicare $21,973 $7,918

Medicaid 6,771 305

Uncompensated 192 240

Health maintenance

organization 1,952 2,292

Private insurance 1,534 958

Other payer 933 419

Out of pocket 10,289 2,529

All sources 43,644 14,660

*Payments for beneficiaries with Alzheimer’s or other dementias

include payments for community-dwelling beneficiaries and

beneficiaries residing in residential care facilities.

Created from unpublished data from the Medicare Current

Beneficiary Survey for 2018.

863

Average Annual Per-Person Payments by Payment Source

for Health Care and Long-Term Care Services, Medicare

Beneﬁciaries Age 65 and Older, with and without

Alzheimer’s or Other Dementias, in 2023 Dollars*

Table

Use and Costs of Health Care Services

Use of Health Care Services

Unadjusted data (that is, data that don’t account for

differences in the characteristics of people with versus

without Alzheimer’s or other dementias) show that people

with Alzheimer’s or other dementias have more than

twice as many hospital stays per year as other older

people.

413

Moreover, the use of health care services by

people with other serious medical conditions is strongly

affected by the presence or absence of dementia. In

particular, people with coronary artery disease, diabetes,

chronic kidney disease, chronic obstructive pulmonary

disease, stroke or cancer who also have Alzheimer’s or

other dementias have higher use and costs of health care

services than people with these medical conditions but

no coexisting dementia.

In addition to having more hospital stays, older people

with Alzheimer’s or other dementias have more skilled

nursing facility stays per year than other older people.

• Hospital. In 2019, there were 518 hospital stays per

1,000 Medicare beneficiaries age 65 and older with

Alzheimer’s or other dementias compared with 234

hospital stays per 1,000 Medicare beneficiaries age 65

and older without these conditions.

413

Overall, 32%

of Medicare beneficiaries with Alzheimer’s or other

dementias have at least one hospital discharge annually

compared with 15% of beneficiaries without these

conditions, with average hospital lengths of stay of

5.1 days versus 4.5 days, respectively.

413

The most

common reasons that people with Alzheimer’s

dementia are hospitalized are not due to the disease

itself, but for other reasons, including syncope

(fainting), fall and trauma (26%), ischemic heart disease

(17%), and gastrointestinal disease (9%),

874

although

the COVID-19 pandemic may have changed the most

common reasons for hospitalization starting in 2020.

A study of inpatient hospitalizations of adults age 60

and older found that those with Alzheimer’s dementia

were at 7% greater risk of dying during the hospital

stay and stayed nearly a day longer than individuals

without Alzheimer’s dementia.

875

Among Medicare

beneficiaries with Alzheimer’s or other dementias,

22% of hospital stays are followed by a readmission

within 30 days.

854

Although not directly comparable,

one study of a random sample of Medicare

beneficiaries from 50 U.S. hospital referral regions

found an overall 30-day readmission rate of 18%.

876

The proportion of hospital stays followed by a

readmission within 30 days remained relatively

constant between 2008 and 2018 for Medicare

beneficiaries with Alzheimer’s and related dementias

(23% in 2008 versus 22% in 2018).

877

• Emergency department. There were nearly 1.8 million

emergency department visits for people with

Alzheimer’s in 2021, representing 1.3% of all

emergency department visits.

878

There are 1,545

emergency department visits per 1,000 Medicare

beneficiaries with Alzheimer’s or other dementias per

year, including emergency department visits that result

in a hospital admission.

877

Although not directly

comparable, there were 640 emergency department

visits per 1,000 Medicare beneficiaries per year based

on a review of utilization patterns of a subset of

Medicare beneficiaries.

876

Emergency department

visits for people with Alzheimer’s or other dementias

increased 22% between 2008 and 2018 (from 1,265

to 1,545 per 1,000 Medicare beneficiaries), exceeding

the increases in emergency department visits for

individuals with cancer, ischemic heart disease and

heart failure among others (Figure 14, page 74).

877

One group of researchers found that individuals

with Alzheimer’s or another dementia seen in the

emergency department are more likely to be admitted

to the hospital or a nursing home from the emergency

department than Medicare beneficiaries without

Alzheimer’s or other dementias.

879

Additionally,

individuals with Alzheimer’s or other dementias are

more likely to have at least one hospitalization, have at

least one subsequent emergency department visit and

be admitted to hospice in the 12 months following the

initial emergency department visit.

• Skilled nursing facility. Skilled nursing facilities provide

direct medical care that is performed or supervised by

registered nurses, such as giving intravenous fluids,

changing dressings, administering tube feedings and

providing around-the-clock personal care services.

880

There are 188 skilled nursing facility stays covered by

Medicare per 1,000 Medicare beneficiaries with

Alzheimer’s or other dementias per year compared

with 40 stays per 1,000 beneficiaries without these

conditions — a rate nearly five times as high.

413

Overall, 19% of Medicare beneficiaries with Alzheimer’s

or other dementias have at least one skilled nursing

facility stay annually compared with 4% of Medicare

beneficiaries without these conditions.

413

73Use and Costs of Health Care, Long-Term Care and Hospice

Costs of Health Care Services

Average per-person payments for health care services

(hospital, physician and other medical provider, nursing

home, skilled nursing facility, hospice and home health

care) and prescription medications were higher for

Medicare beneficiaries with Alzheimer’s or other dementias

than for Medicare beneficiaries without dementia in the

same age group (see Table 16).

A13, 863

Use and Costs of Health Care Services by State

Substantial geographic variation exists in health care

utilization and Medicare payments by individuals with

Alzheimer’s or other dementias (see Table 17, page 77).

Emergency department visits, including visits that result

in a hospital admission, range from 1,154 per 1,000

beneficiaries annually in Nebraska to 1,811 per 1,000

beneficiaries annually in West Virginia, and the

percentage of hospital stays followed by hospital

readmission within 30 days ranges from 16% in Hawaii to

25.8% in Nevada. Medicare spending per capita ranged

from $21,711 in North Dakota to $44,310 in California.

877

Use and Costs of Health Care Services Across the

Alzheimer’s Disease Continuum

Health care costs increase with the presence of

dementia. In a population-based study of adults age 70

to 89, annual health care costs were significantly higher

for individuals with dementia than for those with either

mild cognitive impairment (MCI) or without cognitive

impairment.

882

Annual health care costs for individuals

with MCI were not significantly different, however, from

costs for individuals without cognitive impairment.

Several groups of researchers have found that both

health care and prescription drug spending are

significantly higher for people diagnosed with Alzheimer’s

or other dementias in the year prior to diagnosis,

883-885

although the sources of increased spending differed

across these studies. In one study, the largest differences

in spending were due to inpatient and post-acute

care,

884

while in another study the differences in

spending were primarily due to outpatient care, home

care and medical day services, with only a small

difference in inpatient care costs.

885

*Includes Medicare beneﬁciaries with a claims-based diagnosis of each chronic condition. Beneﬁciaries may have more than one chronic condition.

Created from data from the U.S. Centers for Medicare & Medicaid Services.

877

Percentage

-5

-10

9% 9% 9%

14%

23%

26%

28%

-9%

Percentage Changes in Emergency Department Visits per 1,000 Fee-for-Service

Medicare Beneﬁciaries with Selected Health Conditions Between 2008 and 2018*

Chronic

kidney

disease

Health

condition

Diabetes Cancer StrokeIschemic

heart

disease

HypertensionCOPD Heart

failure

Alzheimer’s

and other

dementias

74 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Figure

Three groups of researchers have found that spending in

the year after diagnosis was substantially higher than

spending for individuals who had similar characteristics but

did not have Alzheimer’s or dementia, by amounts ranging

from $7,264 in 2017 dollars ($8,374 in 2023 dollars)

867

based on individuals with fee-for-service (i.e., traditional)

Medicare coverage, to $17,852 in additional costs in 2014

dollars ($22,473 in 2023 dollars)

884

based on another

group of individuals with fee-for-service Medicare. One

group of researchers, however, did not find a significant

difference in health care spending in the two years

after diagnosis.

886

Researchers have found that health care costs remain

higher beyond the year after diagnosis. One group of

researchers also found the incremental costs remained

higher in the second year after diagnosis ($7,327 in

additional costs in 2014 dollars [$9,224 in 2023 dollars]).

884

Another research team found that health care costs

remained higher in the second through fourth years after a

dementia diagnosis but were not significantly different

from costs for individuals without the diagnosis in the fifth

year after diagnosis.

867

Incremental costs decreased over

time, from $4,241 in 2014 dollars ($4,889 in 2023 dollars)

in year two to $1,302 ($1,501 in 2023 dollars) in year four,

although costs increase dramatically in the last year and last

month of life.

854

Researchers have also found a similar

increase in health care costs in the year before and two

years after a diagnosis of MCI, although the additional costs

were lower than costs for Alzheimer’s.

884

One possible

explanation for the spike in health care costs in the year

immediately before and the year immediately after

diagnosis of Alzheimer’s or another dementia relates to

delays in timely diagnosis. One group of researchers found

that individuals with cognitive decline who sought care

from a specialist (that is, a neurologist, psychiatrist or

geriatrician) had a shorter time to diagnosis of Alzheimer’s

disease.

887

Additionally, individuals diagnosed with cognitive

impairment by a specialist had lower Medicare costs in the

year after receiving a diagnosis of Alzheimer’s dementia

than those diagnosed by a non-specialist.

Impact of Alzheimer’s and Other Dementias on

the Use and Costs of Health Care in People with

Coexisting Medical Conditions

Nearly 9 out of 10 Medicare beneficiaries with Alzheimer’s

disease or other dementias have at least one other chronic

condition.

413

Additionally, they are more likely than those

without dementia to have other chronic conditions.

413

Overall, 2.7 times more Medicare beneficiaries with

Alzheimer’s or other dementias have four or more chronic

conditions (excluding Alzheimer’s disease and other

dementias) than Medicare beneficiaries without dementia.

413

Table 18, page 78, reports the percentage of people with

Alzheimer’s or other dementias who had certain coexisting

medical conditions. In 2019, 46% of Medicare beneficiaries

age 65 and older with dementia also had coronary artery

disease, 46% had chronic kidney disease, 37% had diabetes,

34% had congestive heart failure and 20% had chronic

obstructive pulmonary disease.

413

Medicare beneficiaries who have Alzheimer’s or other

dementias and a coexisting medical condition have higher

average per-person payments for most health care

services than Medicare beneficiaries with the same medical

condition but without dementia. Table 19

A13

, page 79,

shows the average per-person Medicare payments for

seven specific medical conditions among beneficiaries who

have Alzheimer’s or other dementias and beneficiaries who

do not have Alzheimer’s or another dementia.

A13, 413

Medicare beneficiaries with Alzheimer’s or other dementias

have higher average per-person payments in all categories

except physician care. Additionally, one group of

researchers found that individuals with dementia and

behavioral disturbances, such as agitation, had more

psychiatric comorbidities than individuals with dementia

but without behavioral disturbances.

888

This group of

researchers also found that larger proportions of

individuals with dementia and behavioral disturbances used

75Use and Costs of Health Care, Long-Term Care and Hospice

*“Medical provider” includes physician, other provider and laboratory

services, and medical equipment and supplies.

†

Information on payments for prescription medications is only

available for people who were living in the community, that is, not

in a nursing home or an assisted living residence.

Created from unpublished data from the Medicare Current

Beneﬁciary Survey for 2018.

A13, 863

Payment

Source

Beneﬁciaries

with Alzheimer’s

or Other

Dementias

Beneﬁciaries

without

Alzheimer’s or

Other Dementias

Inpatient hospital $7,580 $2,836

Outpatient events 2,867 2,256

Medical provider* 5,956 3,844

Skilled nursing facility 3,890 392

Nursing home 14,347 555

Hospice 2,321 136

Home health care 1,857 274

Prescription medications

†

5,016 3,383

Average Annual per-Person Payments by Type of

Service for Health Care and Long-Term Care Services,

Medicare Beneﬁciaries Age 65 and Older, with and

without Alzheimer’s or Other Dementias, in 2023 Dollars

Table

76 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

medications including antihypertensives, dementia

treatments, antipsychotics, antidepressants, antiepileptics

and hypnotics compared with individuals with dementia

but without behavioral disturbances.

Use and Costs of Long-Term Care Services

Long-term care services include home- and community-

based services and services delivered in assisted living

residences and nursing homes. An estimated 65% of older

adults with Alzheimer’s or other dementias live in the

community, compared with 98% of older adults without

Alzheimer’s or other dementias.

863

Of those with

dementia who live in the community, 74% live with

someone and the remaining 26% live alone.

863

As their

disease progresses, people with Alzheimer’s or other

dementias generally receive more care from family

members and other unpaid caregivers. Many people with

dementia also receive paid long-term care services at

home; in adult day centers, assisted living residences or

nursing homes; or in more than one of these settings at

different times during the often long course of the

disease. Medicaid is the only public program that covers

the long nursing home stays that most people with

dementia require in the severe stage of their illnesses.

Use of Long-Term Care Services by Setting

Most people with Alzheimer’s or other dementias who

live at home receive unpaid help from family members

and friends, but some also receive paid home- and

community-based services, such as personal care and

adult day care. People with Alzheimer’s or other

dementias make up a large proportion of all older adults

who receive adult day services and nursing home care.

• Home health services and other home-based services.

Medicare covers home health services, such as

part-time skilled nursing care; skilled therapy services;

home health aide care, such as intermittent help with

bathing, toileting and dressing if needed, with skilled

nursing or therapy services; and medical social services

in the home. Home health agencies provide the

majority of home health care services.

889

Fee-for-

service Medicare does not cover homemaker services,

such as meal preparation, or personal care services,

such as help with bathing, toileting and dressing, if this

is the only care that is needed; however, Medicare

Advantage plans (Medicare Part C) are allowed to offer

these services as supplemental benefits, and 17%

offered in-home support services as a benefit in

2023.

890

Additionally, 16% of Medicare Advantage

plans offered food and produce as a supplemental

benefit, and 8% offered meals beyond a limited basis.

890

These supplemental benefits are more common in

Medicare Advantage Special Needs Plans (i.e., plans

that are designed for Medicare enrollees with specific

needs, such as individuals with a chronic condition,

individuals who are also enrolled in Medicaid, and

institutionalized enrollees), with 41% offering a food

and produce benefit, 31% offering in-home support

services, and 15% offering meals beyond a limited

basis. Although Medicare Advantage Special Needs

Plans can be offered to individuals with specific

chronic conditions, including dementia, only 8% of

Special Needs Plan enrollees are enrolled in a plan for

chronic or disabling conditions, representing less than

1% of all Medicare enrollees.

891, 892

The vast majority

of Special Needs Plan enrollees are individuals also

enrolled in Medicaid (i.e., Dual Eligible Special Needs

Plan enrollees).

Thirty-six percent of individuals using home health

services have Alzheimer’s or other dementias.

893

Of Medicare beneficiaries age 65 and older with

Alzheimer’s or other dementias, 26% have at least one

home health visit paid by Medicare during the year,

compared with 8% of Medicare beneficiaries age 65

and older without Alzheimer’s or other dementias

413

and they use an average of 110 days of home care per

year (including homemaker services and other services

not covered by Medicare) compared with 64 days per

year for individuals age 65 and older without the

disease.

889

Receipt of home health services after

hospital discharge has been shown to increase the

likelihood of remaining in the community for at least

30 days after hospital discharge, with greater benefits

from longer durations of home health care.

894

• Adult day services. The fourth most common chronic

condition in participants using adult day services is

Alzheimer’s disease or other dementias, and 25% of

individuals using adult day services have Alzheimer’s or

other dementias.

893

Fourteen percent of adult day

service centers in the United States specialized in caring

for individuals with Alzheimer’s disease or other

dementias in 2020, up from 10% in 2016.

893, 895

The

percentage of participants with Alzheimer’s or other

dementias was higher in adult day service centers

that provided either low- or moderate-level medical

services than in centers that either provided no medical

services or mainly provided health or medical services.

895

• Residential care facilities. Forty-two percent of

residents in residential care facilities (that is, housing

that includes services to assist with everyday activities,

such as personal care, medication management

and meals), including assisted living facilities, had

Alzheimer’s or other dementias in 2020, up from

34% in 2016.

893, 896

Sixty-one percent of residential

care communities are small (four to 25 beds),

896

and

these facilities have a higher percentage of residents

with Alzheimer’s or other dementias than larger

facilities (51% in facilities with four to 25 beds

compared with 47% in facilities with 26 to 50 beds and

*Based on Medicare utilization for 2018.

†

Based on Medicare utilization for 2022.

Created from data from the U.S. Centers for Medicare & Medicaid Services.

877, 881

State

Number of

ED Visits

per 1,000

Beneﬁciaries*

Percentage of

Hospital Stays

Followed by

Readmission

within 30 Days*

Per Capita

Medicare

Payments

†

Alabama 1,410.8 21.2 $27,369

Alaska 1,477.6 19.3 29,741

Arizona 1,436.2 20.2 29,111

Arkansas 1,530.4 21.5 27,092

California 1,496.3 23.0 44,310

Colorado 1,424.8 18.6 28,687

Connecticut 1,635.4 22.7 34,958

Delaware 1,577.6 21.5 32,413

District of Columbia 1,741.7 25.6 39,378

Florida 1,551.9 23.0 34,142

Georgia 1,573.2 22.5 30,219

Hawaii 1,248.2 16.0 24,763

Idaho 1,389.2 17.2 25,057

Illinois 1,624.1 23.4 34,637

Indiana 1,514.2 21.3 30,219

Iowa 1,310.7 18.0 22,067

Kansas 1,406.0 19.8 27,260

Kentucky 1,735.5 23.1 29,473

Louisiana 1,709.9 22.1 34,182

Maine 1,665.3 19.7 24,119

Maryland 1,524.1 24.4 37,381

Massachusetts 1,668.4 24.7 36,930

Michigan 1,691.4 24.0 30,432

Minnesota 1,467.1 21.6 27,300

Mississippi 1,714.8 22.1 31,174

Missouri 1,529.6 22.6 28,324

State

Number of

ED Visits

per 1,000

Beneﬁciaries*

Percentage of

Hospital Stays

Followed by

Readmission

within 30 Days*

Per Capita

Medicare

Payments

†

Montana 1,328.6 16.6 $22,360

Nebraska 1,153.6 18.7 25,345

Nevada 1,711.5 25.8 41,608

New Hampshire 1,493.8 20.4 28,663

New Jersey 1,456.3 22.9 38,795

New Mexico 1,563.7 20.6 27,258

New York 1,461.3 23.7 43,601

North Carolina 1,683.8 21.5 27,591

North Dakota 1,173.3 18.4 21,711

Ohio 1,618.7 22.5 30,661

Oklahoma 1,692.1 21.6 32,584

Oregon 1,628.4 18.7 25,470

Pennsylvania 1,470.5 22.0 31,112

Rhode Island 1,605.6 23.2 30,782

South Carolina 1,558.2 21.7 29,657

South Dakota 1,200.1 18.6 24,776

Tennessee 1,548.6 21.5 28,543

Texas 1,549.1 22.1 37,679

Utah 1,194.3 16.7 26,233

Vermont 1,528.4 19.6 23,329

Virginia 1,621.7 21.6 27,870

Washington 1,479.2 18.6 25,274

West Virginia 1,811.4 24.1 29,240

Wisconsin 1,519.9 19.9 27,335

Wyoming 1,445.9 17.4 25,452

Emergency Department (ED) Visits, Hospital Readmissions and Per Capita Medicare Payments in 2023 Dollars

by Medicare Beneﬁciaries with Alzheimer’s or Other Dementias

77Use and Costs of Health Care, Long-Term Care and Hospice

Table

78 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Created from unpublished data from the National 100% Sample

Medicare Fee-for-Service Beneﬁciaries for 2019.

413

39% in facilities with more than 50 beds).

897

Fifty-eight

percent of residential care facilities offer activities or

programs for residents with Alzheimer’s or other

dementias.

898

Average aide staff hours per resident day

in residential care communities range from 2.2 hours

per day in facilities with less than 25% of residents

diagnosed with dementia to 2.7 hours per day in

facilities with more than 75% of residents diagnosed

with dementia.

896

• Nursing home care. Overall, 46% of nursing home

residents have Alzheimer’s or other dementias,

893

although the prevalence differs by duration of nursing

home stay. While 36% of short-stay (less than 100

days) nursing home residents have Alzheimer’s or

other dementias, 58% of long-stay (100 days or longer)

residents have these conditions. Twenty-four percent

of Medicare beneficiaries with Alzheimer’s or other

dementias reside in a nursing home, compared with 1%

of Medicare beneficiaries without these conditions.

863

At age 80, approximately 75% of people with

Alzheimer’s dementia live in a nursing home compared

with only 4% of the general population age 80.

415

• Alzheimer’s special care units and dedicated facilities.

An Alzheimer’s special care unit is a dedicated unit, wing

or floor in a nursing home or other residential care

facility that has tailored services for individuals with

Alzheimer’s or other dementias. Thirteen percent of

nursing homes and 21% of assisted living and other

residential care communities have a dementia special

care unit.

893

Less than 1% (0.3%) of nursing homes and

11% of other residential care facilities exclusively

provide care to individuals with dementia.

Long-Term Care Services Provided at Home and

in the Community

Overall, 70% of spending for long-term care services and

supports is covered by public payers, including Medicaid

(43%), Medicare (21%) and other public payers (6%), and 15%

is covered by out-of-pocket payments, including direct

payments and deductibles and copayments for services

covered by another payment source (15%). Private insurance

covers only 9% of long-term services and supports.

899

Nationally, state Medicaid programs are shifting long-term

care services from institutional care to home- and

community-based services as a means to both reduce

unnecessary costs and meet the growing demand for these

services by older adults. The federal and state governments

share the management and funding of Medicaid, and states

differ greatly in the services covered by their Medicaid

programs. In 2020, home- and community-based services

represented the majority (62%) of the $199.4 billion spent

by Medicaid on long-term care services and supports, with

institutional care representing the remaining 38%.

900

However, there is substantial variation across states in

spending on home- and community-based services, ranging

from 32% of total Medicaid long-term care services and

supports in Mississippi to 84% of long-term care services

and supports spending in Oregon, despite evidence

demonstrating that Medicaid spending on these services

reduces costs.

901

Thirty-three percent of Medicaid’s total

expenditures cover expenditures related to long-term care

services and supports.

Between 2010 and 2020, Medicaid spending on

home- and community-based services increased from

48% to 62% of total long-term services and supports

expenditures.

900

Additionally, total spending on home care

for Medicare beneficiaries with Alzheimer’s or other

dementias increased dramatically between 2004 and

2018.

902

Increases in spending may have been due to a

variety of factors, including more people being diagnosed

with Alzheimer’s dementia, more people using home care,

an increase in the number of coexisting medical

conditions, more intensive use of home care services and

an increase in Medicaid coverage for older adults.

902

two systematic reviews of the cost-effectiveness of

enhanced home support interventions for individuals with

dementia, researchers found some evidence to support

occupational therapy, home-based exercise, and some

psychological and behavioral treatments as potentially

cost-effective approaches, although research that has

evaluated both the costs and benefits of enhanced home

support interventions is scant.

903, 904

Coexisting Condition Percentage

Coronary artery disease 46

Chronic kidney disease 46

Diabetes 37

Congestive heart failure 34

Chronic obstructive pulmonary disease 20

Stroke 13

Cancer 10

Percentage of Medicare Beneﬁciaries Age 65 and

Older with Alzheimer's or Other Dementias Who

Have Speciﬁed Coexisting Conditions

Table

Created from unpublished data from the National 100% Sample Medicare Fee-for-Service Beneﬁciaries for 2019.

A13,413

Medical Condition by

Alzheimer’s/Dementia

(A/D) Status

Average Per-Person Medicare Payments

Total

Medicare

Payments

Hospital

Care

Physician

Care

Skilled

Nursing

Home Care

Home

Health Care

Hospice

Care

Coronary artery disease

With A/D $28,418 $8,462 $4,815 $4,362 $2,446 $3,799

Without A/D 17,976 6,119 4,718 1,353 938 421

Diabetes

With A/D 28,064 8,478 4,834 4,417 2,353 3,263

Without A/D 15,729 5,213 4,225 1,227 827 291

Congestive heart failure

With A/D 31,433 9,739 5,006 4,928 2,595 4,305

Without A/D 25,415 9,331 5,478 2,385 1,557 798

Chronic kidney disease

With A/D 29,151 8,799 4,791 4,552 2,471 3,857

Without A/D 19,733 6,720 4,918 1,626 1,082 470

Chronic obstructive pulmonary disease

With A/D 31,981 10,055 5,226 5,088 2,622 3,842

Without A/D 22,785 8,086 5,372 1,898 1,298 708

Stroke

With A/D 30,551 9,154 5,069 4,854 2,584 3,753

Without A/D 22,196 7,310 5,226 2,334 1,548 652

Cancer

With A/D 28,352 8,127 5,200 4,076 2,429 3,760

Without A/D 18,330 5,056 5,717 1,032 732 732

Average Annual Per-Person Payments by Type of Service and Coexisting Medical Condition for Medicare

Beneﬁciaries Age 65 and Older, with and without Alzheimer’s or Other Dementias, in 2023 Dollars

79Use and Costs of Health Care, Long-Term Care and Hospice

Table

80 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Transitions Between Care Settings

Individuals with dementia often move between a nursing

facility, hospital and home, rather than remaining solely

in a nursing facility. In a longitudinal study of primary care

patients with dementia, researchers found that individuals

discharged from a nursing facility were nearly equally as

likely to be discharged home (39%) as discharged to a

hospital (44%).

905

Individuals with dementia may also

transition between a nursing facility and hospital or

between a nursing facility, home and hospital, creating

challenges for caregivers and providers to ensure that care

is coordinated across settings. Other researchers have

shown that nursing home residents frequently have

burdensome transitions at the end of life, including

admission to an intensive care unit in the last month of life

and late enrollment in hospice,

906

although the number of

care transitions for nursing home residents with advanced

cognitive impairment varies substantially across geographic

regions of the United States.

907

Costs of Long-Term Care Services

• Home care. The median cost in 2021 for a nonmedical

home health aide was $27 per hour and $5,148 per

month ($28 and $5,341 in 2023 dollars).

908

Nonmedical home care costs increased 5.9% annually

on average between 2017 and 2021. The cost of

homemaker services was $26 per hour and $4,957 per

month ($27 and $5,143 in 2023 dollars) and increased

5.4% annually on average between 2017 and 2021.

• Adult day centers. The median cost of adult day services

was $78 per day in 2021 ($85 in 2023 dollars).

908

The

cost of adult day services increased 2.8% annually on

average between 2017 and 2021.

• Assisted living residences. The median cost for care in

an assisted living residence was $4,500 per month, or

$54,000 per year in 2021 ($4,921 and $59,047 in

2023 dollars).

908

The cost of assisted living increased

4.4% annually on average between 2017 and 2021.

• Nursing homes. The 2021 average cost for a private

room in a nursing home was $297 per day, or

$108,405 per year ($325 and $118,536 in 2023

dollars), and the average cost of a semi-private room

was $260 per day, or $94,900 per year ($284 and

$103,769 in 2023 dollars).

908

The cost of nursing home

care increased 3.3% annually on average for a private

room and 2.9% annually on average for a semi-private

room between 2017 and 2021.

Aﬀordability of Long-Term Care Services

Few individuals with Alzheimer’s or other dementias have

sufficient long-term care insurance or can afford to pay

out of pocket for long-term care services for as long as

the services are needed.

• Medicare beneficiaries with a dementia diagnosis

have lower household incomes on average than

beneficiaries without a dementia diagnosis. In 2018,

23% of community-dwelling Medicare beneficiaries

with a dementia diagnosis had household incomes

below the federal poverty level, and 53% had

household incomes between 100% and 200% of the

federal poverty level, while 15% of those without a

dementia diagnosis lived below the federal poverty

level and 40% had household incomes between 100%

and 200% of the federal poverty level.

909

• Asset data are not available for people with Alzheimer’s

or other dementias specifically, but 50% of Medicare

beneficiaries age 65 and older had total savings of

$83,850 or less in 2019 dollars ($92,188 in 2023

dollars), and 25% had savings of $9,650 or less in 2019

dollars ($10,610 in 2023 dollars). Median savings for

White Medicare beneficiaries were 8.5 times higher

than for Black beneficiaries and more than 15 times

higher than for Hispanic beneficiaries.

910

In a 2022

survey of adults about the affordability of long-term

care, less than one-third (31%) of adults age 65 and

older reported being very confident that they would

have the financial resources to pay for necessary care

as they age.

911

Additionally, of adults age 50 and older,

nearly two-thirds reported feeling anxious about being

able to afford nursing home or assisted living care,

if they should need it. Although individuals from lower

income households were more likely to report feeling

anxious about the affordability of long-term care

(77% with household incomes less than $40,000 reported

being anxious about the affordability of long-term care),

nearly half of individuals from households with incomes

$90,000 or greater also reported being anxious about

the affordability (in 2022 dollars; $41,553 and $93,495,

respectively, in 2023 dollars).

Long-Term Care Insurance

Long-term care insurance typically covers the cost of

care provided in a nursing home, assisted living residence

and Alzheimer’s special care residence, as well as

community-based services such as adult day care and

services provided in the home, including nursing care

and help with personal care.

921

81Use and Costs of Health Care, Long-Term Care and Hospice

Although Medicare covers care in a long-term

care hospital, skilled nursing care in a skilled

nursing home and hospice care, it does not

cover long-term care (i.e., stays more than

90 days) in a nursing home.

912

Results from a 2022 survey about the affordability of

long-term care revealed that 23% of adults believed that

Medicare would cover the cost of nursing home care,

and 28% were not sure who would pay for nursing home

care. Even more concerning, 45% of individuals age

65 and older believed that Medicare would cover the

cost of nursing home care.

911

These findings suggest

that Medicare beneficiaries and caregivers need more

education and information about the types of services

that Medicare covers. In particular, Medicare does not

cover custodial care, that is, care to assist with activities

of daily living, such as dressing and bathing. Most

nursing home care is custodial care, and therefore is

not covered by Medicare.

Medicare does cover post-acute skilled nursing care,

or nursing and therapy care that must be performed

or supervised by medical professionals, such as

registered or licensed nurses.

913

For Medicare to cover

skilled nursing care, the Medicare beneficiary must

have a qualifying hospital stay, a physician must

decide that skilled care is needed, and the medical

condition requiring skilled care must be related to the

hospitalization.

914

Fee-for-service Medicare (Part A)

covers the first 20 days of skilled nursing care with

$0 coinsurance for each benefit period. For the next

80 days of skilled nursing care (days 21-100), the

beneficiary pays $204 per day in coinsurance.

915

A long-term care hospital is an acute care hospital that

specializes in caring for people who stay more than

25 days, on average. A long-term care hospital provides

specialized care, such as respiratory therapy, pain

management and treatment for head trauma.

916

Benefits work in the same way that Medicare covers

other acute care hospitalizations.

The terms “Medicare” and “Medicaid” are also often

confused. Most individuals who are age 65 or older, have

a permanent disability or have end-stage kidney disease

qualify for Medicare Part A, which is also referred to as

hospital insurance.

917

Individuals are eligible to receive

Medicare Part A at no cost if they have worked and paid

Medicare taxes for at least 10 years (i.e., have a sufficient

earnings history) or a spouse, parent or child has a

sufficient earnings history. Medicare Part B (medical

insurance) is a voluntary program that requires enrollees

to pay a monthly premium. Medicare Advantage Plans,

also referred to as Medicare Part C, are becoming more

common, with more than one-half (51%) of Medicare

beneficiaries enrolled in this type of plan in 2023.

918

Advantage Plans are privately offered Medicare plans

that combine Medicare Parts A and B and often also

include prescription drug coverage (Medicare Part D).

919

While Medicare is a federal program, Medicaid is a

joint federal and state program, and benefits vary

state-to-state.

920

Individuals with low incomes and/or

low resources may qualify for Medicaid coverage.

Medicaid covers some services that Medicare either

does not cover or only partially covers, such as

nursing home care and home- and community-based

care. Individuals who are enrolled in both Medicare

and Medicaid are sometimes referred to as being

“dually eligible.”

For more information about Medicare, visit

medicare.gov. For more information about Medicaid,

visit https://www.medicaid.gov/.

Medicare Does Not Cover Long-Term Care in a Nursing Home

82 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Based on data from the National Health Expenditure

Account, it is estimated that private insurance covered

only 9% ($38.5 billion) of the cost of long-term services

and supports in 2019.

899

Industry reports estimate that

between 5.3 and 7.1 million Americans had private

long-term care insurance in 2020-2021.

922, 923

However,

the long-term care insurance market is shrinking, with

only 57,000 new policies sold in 2018, compared with

754,000 in 2002.

924

The average premium for a long-

term care insurance policy was $155 per month in

2021.

923

The private long-term care insurance market

has consolidated since 2000. In 2000, 41% of individuals

with a long-term care policy were insured by one of the

five largest insurers versus 60% in 2020.

913, 922

Cognitive

conditions are the most common final diagnosis for

long-term care insurance claims lasting more than

one year, representing 49% of claims; however, these

conditions are third most common (16%) for insurance

claims lasting one year or less, after cancer and

musculoskeletal conditions (31% and 25% of claims,

respectively).

922

Medicare Advantage plans are allowed to

provide supplemental benefits, such as adult day care,

caregiver support and in-home support services for

chronically ill beneficiaries. However, only 17% of

individual plans offered in-home support services as a

benefit in 2023, and these supplemental benefits are

unlikely to offset a substantial portion of long-term

care costs.

890

To address the dearth of private long-term care

insurance options and the high out-of-pocket cost of

long-term care services, Washington became the first

state in the country to create a public state-operated

long-term care insurance program.

925

The Long-Term

Services and Supports Trust Program (WA Cares Fund)

is funded by a payroll tax on employees of 58 cents per

$100 earned that began in July 2023, and self-employed

individuals can choose to participate in the program. The

program is currently structured to pay up to $36,500 in

lifetime benefits beginning in July 2026.

926

Although

other states have contemplated implementing a long-

term care tax to fund long-term care insurance, none

have yet passed legislation.

927

Medicaid Costs

Medicaid covers nursing home care and long-term

care services in the community for individuals who meet

program requirements for level of care, income and

assets.

928

To receive coverage, beneficiaries must have

low incomes. Beneficiaries with financial resources

above Medicaid thresholds may spend down their assets

and income to become eligible for coverage. Once

enrolled, most nursing home residents with Medicaid

must spend all of their Social Security income and any

other monthly income, except for a very small personal

needs allowance, to pay for nursing home care.

Medicaid only makes up the difference if the nursing

home resident cannot pay the full cost of care or has a

financially dependent spouse. Although Medicaid covers

the cost of nursing home care, its coverage of many other

long-term care and support services, such as assisted

living care, home-based skilled nursing care and help with

personal care, varies by state.

Twenty-four percent of older individuals with Alzheimer’s

or other dementias who have Medicare also have

Medicaid coverage, compared with 10% of individuals

without dementia.

863

Because Medicaid pays for nursing

home and other long-term care services, the high use

of these services by people with dementia translates

into high costs to Medicaid. Average annual Medicaid

payments per person for Medicare beneficiaries with

Alzheimer’s or other dementias ($6,771) were 22 times as

great as average Medicaid payments for Medicare

beneficiaries without Alzheimer’s or other dementias

($305) (see Table 15, page 72).

863

Much of the difference

in payments for beneficiaries with Alzheimer’s or other

dementias compared with other beneficiaries is due to

the costs associated with nursing home care.

Total Medicaid spending for people with Alzheimer’s or

other dementias is projected to be $68 billion in 2024.

A11

Actual and estimated state-by-state Medicaid spending

for people with Alzheimer’s or other dementias in

2020 and 2025 (in 2020 dollars) is included in Table 20,

page 83.

Use and Costs of Care at the End of Life

Hospice care provides medical care, pain management,

and emotional and spiritual support for people who

are dying, including people with Alzheimer’s or other

dementias, either in a care residence or at home.

Hospice care also provides emotional and spiritual

support and bereavement services for families of people

who are dying. The main purpose of hospice is to allow

individuals to die with dignity and without pain and other

distressing symptoms that often accompany terminal

illness. Medicare is the primary source of payment for

hospice care, but private insurance, Medicaid and other

sources also pay for hospice care. Medicare beneficiaries

enrolled in Medicare Part A (i.e., Medicare’s hospital

insurance) can choose to enroll in Medicare’s hospice

benefit if a hospice physician certifies that the individual

is terminally ill (i.e., expected to live six months or less),

and the individual accepts palliative or comfort care and

forgoes curative care for the terminal illness. In this way,

hospice care replaces other Medicare-covered benefits

for treating the terminal illness and related conditions.

929

Based on data from the National Hospice Survey for

2008 to 2011, nearly all hospices (99%) cared for

*All cost ﬁgures are reported in 2020 dollars.

Created from data from the Lewin Model.

A11

State

2020

(in millions

of dollars)

2025

(in millions

of dollars)

Percentage

Increase

Alabama $925 $1,127 21.8

Alaska 76 110 44.6

Arizona 414 545 31.7

Arkansas 396 454 14.6

California 4,197 5,235 24.7

Colorado 635 789 24.1

Connecticut 1,022 1,187 16.1

Delaware 253 313 23.6

District of Columbia 126 135 6.8

Florida 2,689 3,453 28.4

Georgia 1,265 1,594 26.0

Hawaii 240 285 18.7

Idaho 149 196 31.2

Illinois 1,787 2,199 23.1

Indiana 1,054 1,233 17.1

Iowa 676 792 17.2

Kansas 473 543 14.6

Kentucky 803 949 18.2

Louisiana 765 934 22.1

Maine 212 274 29.5

Maryland 1,231 1,535 24.7

Massachusetts 1,753 2,031 15.9

Michigan 1,487 1,738 16.9

Minnesota 905 1,087 20.1

Mississippi 606 729 20.4

Missouri 973 1,137 16.8

State

2020

(in millions

of dollars)

2025

(in millions

of dollars)

Percentage

Increase

Montana $166 $203 22.2

Nebraska 372 411 10.3

Nevada 203 277 36.5

New Hampshire 254 335 31.9

New Jersey 2,186 2,614 19.6

New Mexico 227 279 22.9

New York 5,453 6,306 15.6

North Carolina 1,332 1,628 22.2

North Dakota 190 215 13.2

Ohio 2,534 2,940 16.0

Oklahoma 516 611 18.3

Oregon 253 317 25.4

Pennsylvania 3,658 4,029 10.2

Rhode Island 470 565 20.1

South Carolina 652 818 25.4

South Dakota 182 212 16.6

Tennessee 1,109 1,377 24.2

Texas 3,202 3,949 23.3

Utah 185 235 27.0

Vermont 116 146 26.4

Virginia 1,000 1,266 26.6

Washington 547 689 26.0

West Virginia 445 521 17.1

Wisconsin 777 924 18.9

Wyoming 86 111 28.8

Total Medicaid Payments for Americans Age 65 and Older Living with Alzheimer’s or Other Dementias by State*

83Use and Costs of Health Care, Long-Term Care and Hospice

Table

84 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

individuals with dementia, and 67% of hospices had

residents with a primary diagnosis of dementia.

930

2017, 4,254 U.S. companies provided hospice care in

the home, assisted living communities, long-term care

residences, inpatient hospitals, and inpatient hospice

and other settings.

931

Nearly two-thirds (63%) of Medicare decedents

(i.e., people who have died) with Alzheimer’s or other

dementias used hospice in their last six months of life

in 2017 compared with 36% of Medicare decedents

without Alzheimer’s or other dementias.

932

In 2017,

dementia, including Alzheimer’s dementia, was the

second most common primary diagnosis for Medicare

beneficiaries using hospice care, representing 18% of

Medicare beneficiaries receiving hospice care (Table 21,

page 85).

931

Alzheimer’s or other dementias are even

more common in individuals receiving hospice care

when taking into account the disease as a coexisting

or secondary condition. Forty-five percent of hospice

users in 2020 had a diagnosis of Alzheimer’s or

other dementias.

893

Patterns of hospice use for individuals with dementia

differ from patterns for individuals without dementia in

at least two notable ways. The average number of days

of hospice care for individuals with a primary diagnosis

of dementia was 50% higher than for individuals with

other primary diagnoses, based on data from the 2008

to 2011 National Hospice Survey.

930

Individuals with a

primary diagnosis of dementia use an average of 112

days of hospice care versus 74 days for individuals with

other primary diagnoses. Recently, researchers found

that individuals with dementia as either the primary

hospice diagnosis or as a secondary condition were more

likely than other hospice users to be enrolled in hospice

for more than six months.

933

However, long hospice stays

place individuals with dementia at risk for disenrollment,

and researchers have found that individuals with

dementia are more likely to be disenrolled after more

than six months in hospice than patients with other

diagnoses.

930, 933

Reasons for disenrollment include

admission to an acute care hospital, loss of eligibility

because the individual was no longer terminally ill,

and failure to recertify for hospice.

934

For hospice

enrollments of at least six months, hospice providers are

required to assess individuals every 60 days, beginning

at six months, to ensure they continue to meet eligibility

requirements, and these assessments coupled with

Medicare payment rates that are roughly 20% lower

after the first 60 days, may contribute to disenrollment;

however, more research is needed to understand the

implications of these policies for individuals with

dementia in hospice.

935, 936

Overall, 12.2% of Medicare beneficiaries with

Alzheimer’s had at least one hospice claim in 2018,

compared with 1.4% of Medicare beneficiaries without

the disease, translating into per-person hospice

payments (for all beneficiaries, regardless of whether

they used any hospice services) of $2,321 for individuals

with Alzheimer’s compared with $136 for all other

Medicare beneficiaries.

863

In 2016, Medicare

reimbursement for home hospice services changed from

a simple daily rate for each setting to a two-tiered

approach that provides higher reimbursement for days

1 to 60 than for subsequent days and a service intensity

add-on payment for visits by a registered nurse or social

worker in the last seven days of life. In fiscal year 2024,

the routine home care rates are $218.33 per day for days

1 to 60 and $172.35 per day for days 61 and beyond.

935

Intensity of care at the end of life has decreased over

the past two decades as hospice enrollment has

increased. One group of researchers found that the

number of inpatient hospital days in the last six months

of life decreased from 15.3 to 11.8 between 2004 and

2017, although intensive care unit stays and number of

days in a skilled nursing facility increased modestly over

the same time period.

932

Expansion of hospice care is

associated with fewer individuals with dementia having

more than two hospitalizations for any reason or more

than one hospitalization for pneumonia, urinary tract

infection, dehydration or sepsis in the last 90 days of

life.

937

For Medicare beneficiaries with advanced

dementia who receive skilled nursing home care in the

last 90 days of life, those who are enrolled in hospice are

less likely to die in the hospital.

938

Additionally, those

enrolled in hospice care are less likely to be hospitalized

in the last 30 days of life

939

and more likely to receive

regular treatment for pain.

940

Satisfaction with medical

care is higher for families of individuals with dementia

who are enrolled in hospice care than for families of

individuals with dementia not enrolled in hospice care.

941

Despite the important role of end-of-life care for

individuals with Alzheimer’s, differences in hospice use

by race/ethnicity exist. One group of researchers found

substantially smaller proportions of Black and Hispanic

Medicare beneficiaries with dementia enrolled in hospice

in the last six months of life compared with White

Medicare beneficiaries with dementia (38% and 43%

versus 51% respectively).

942

Furthermore, larger

proportions of Black and Hispanic beneficiaries with

dementia had at least one emergency department visit

(80% and 77% respectively) and at least one

hospitalization (77% for both groups) compared with

White beneficiaries with dementia (71% and 68%

respectively) in the last six months of life.

942

Black and

Hispanic beneficiaries were also more likely to have an

emergency department visit and/or a hospitalization

after hospice enrollment.

Created from data from the U.S. Centers for Medicare & Medicaid Services.

931

State

Number of

Beneﬁciaries

Percentage of

Beneﬁciaries

Alabama 5,867 18

Alaska 95 14

Arizona 7,229 18

Arkansas 3,133 18

California 30,045 20

Colorado 3,254 15

Connecticut 2,380 15

Delaware 716 12

District of Columbia 263 18

Florida 19,897 15

Georgia 10,435 21

Hawaii 943 16

Idaho 1,566 17

Illinois 9,795 18

Indiana 5,922 17

Iowa 3,278 17

Kansas 2,770 18

Kentucky 2,895 15

Louisiana 4,786 19

Maine 1,494 19

Maryland 4,072 17

Massachusetts 7,245 23

Michigan 9,001 16

Minnesota 5,399 21

Mississippi 3,547 20

Missouri 5,991 17

State

Number of

Beneﬁciaries

Percentage of

Beneﬁciaries

Montana 507 11

Nebraska 1,648 18

Nevada 2,167 17

New Hampshire 1,007 17

New Jersey 8,207 23

New Mexico 1,523 15

New York 7,669 16

North Carolina 8,486 17

North Dakota 468 18

Ohio 12,656 17

Oklahoma 4,102 18

Oregon 3,565 17

Pennsylvania 12,384 17

Rhode Island 1,657 25

South Carolina 6,038 20

South Dakota 421 13

Tennessee 6,435 19

Texas 26,672 22

Utah 2,506 19

Vermont 543 17

Virginia 6,440 19

Washington 5,459 20

West Virginia 1,552 15

Wisconsin 5,086 16

Wyoming 89 7

U.S. Total 278,192 18

Number and Percentage of Medicare Beneﬁciaries Admitted to Hospice with a Primary Diagnosis of Dementia by State, 2017

85Use and Costs of Health Care, Long-Term Care and Hospice

Table

86 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Researchers have found similar reductions in

hospitalizations at the end of life for individuals

receiving palliative care. For nursing home residents

with moderate-to-severe dementia, those who received

an initial palliative care consultation between one and

six months before death had significantly fewer

hospitalizations and emergency department visits in the

last seven and 30 days of life compared with those who

did not receive palliative care.

943

Individuals with an initial

palliative care consultation within one month of death

also had significantly fewer hospitalizations in the last

seven days of life compared with those who did not

receive palliative care.

943

One essential component of

palliative care is advance care planning (i.e., a plan for

future medical care that includes the patient’s goals and

preferences, should the patient become unable to make

their own decisions). Although Medicare reimburses

physicians for visits related to advance care planning,

these visits rarely occur. In 2017, less than 3% of fee-for-

service Medicare beneficiaries had at least one claim for

advance care planning.

944

However, compared with

individuals without newly diagnosed conditions, Medicare

beneficiaries with newly diagnosed Alzheimer’s were 1.3

times as likely to have one or more claims for advance

care planning. Racial/ethnic disparities in the completion

of advance care planning in the last six months of life are

concerning. One group of researchers found that the

proportion of Black and Hispanic Medicare beneficiaries

with dementia with advance care planning was less than

half that of White beneficiaries.

942

Life-Sustaining Interventions at the End of Life

Life-sustaining interventions, such as mechanical

ventilation, tracheostomy, tube feeding and

resuscitation can be especially harmful to individuals

with Alzheimer’s. Although these interventions may not

be consistent with patient preferences, individuals with

Alzheimer’s may be at greater risk for receiving these

treatments. One group of researchers found that

Medicare beneficiaries with advanced dementia who

lived in the community were 1.8 times as likely to

receive life-sustaining treatments in the last three

months of life, compared with individuals without

dementia living in the community.

945

Individuals with

frequent transitions between health care settings are

more likely to have feeding tubes at the end of life, even

though feeding tube placement does not prolong life or

improve outcomes.

946

The odds of having a feeding tube

Created from data from the National Center for Health Statistics.

948,949

Nursing home/long-term care

Percentage

Decedent’s home Hospice facility

Medical facility Other Place of death not recorded

Place of Death Due to Alzheimer’s Disease, 2002 to 2021

100

02 03 04 05 06 07 08 09 10 11 12 13 14 15 16 17 18 19 20 21Year

Figure

inserted at the end of life vary across the country and

are not explained by severity of illness, restrictions on

the use of artificial hydration and nutrition, ethnicity or

gender. With the expansion of Medicare-supported

hospice care, the use of feeding tubes in the last three

to six months of life has decreased for individuals with

Alzheimer’s or other dementias.

932, 937

Finally, with the

increased focus on the lack of evidence supporting

feeding tube use for people with advanced dementia,

the proportion of nursing home residents receiving a

feeding tube in the 12 months before death decreased

from nearly 12% in 2000 to less than 6% in 2014.

947

However, individuals with advanced dementia are

significantly more likely to receive tube feeding in

the last three months of life compared with those

without dementia.

945

Place of Death for Individuals with Alzheimer’s Disease

Between 2002 and 2021, the proportion of individuals

with Alzheimer’s who died in a nursing home decreased

from 67% to 42%, and the proportion who died in a

medical facility decreased from 13% to 5%. During the

same period, the proportion of individuals who died at

home increased from 15% to 37% (Figure 15).

948, 949

Use and Costs of Health Care and Long-Term

Care Services by Race and Ethnicity

Among Medicare beneficiaries with Alzheimer’s or other

dementias, Black beneficiaries had the highest unadjusted

Medicare payments per person per year, while White

beneficiaries had the lowest payments ($27,814 versus

$22,306, respectively) (Table 22, page 88). The largest

difference in payments was for hospital care, with Black

Medicare beneficiaries incurring 1.6 times as much in

hospital care costs as White beneficiaries ($9,006 versus

$5,791).

413

White beneficiaries had the highest hospice

payments, however, of all racial and ethnic groups. A study

of racial and ethnic differences in health care spending

using the Medical Expenditure Panel Survey found similar

patterns in unadjusted total spending.

950

However, after

adjusting for socioeconomic characteristics and functional

status, total health care spending did not differ significantly

among groups.

Created from unpublished data from the National 100% Sample Medicare Fee-for-Service Beneﬁciaries for 2019.

413

Congestive

heart failure

CancerCondition Chronic

kidney

disease

Coronary

artery

disease

Stroke DiabetesChronic

obstructive

pulmonary

disease

With Alzheimer’s or other dementias

Hospital stays Without Alzheimer’s or other dementias

Number of Hospital Stays per 1,000 Medicare Beneﬁciaries Age 65 and Older with Speciﬁed

Coexisting Medical Conditions, with and without Alzheimer’s or Other Dementias, 2019

1,000

800

600

400

200

816

606

774

668

722

536

706

478

682

436

666

368

666

366

87Use and Costs of Health Care, Long-Term Care and Hospice

This report keeps the racial, ethnic and other

population identiﬁers used in source documents

when describing ﬁndings from speciﬁc studies.

Figure

88 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

The COVID-19 pandemic has disproportionately

affected Americans living with Alzheimer’s and

other dementias.

As data continue to emerge on the toll of the pandemic, it is

increasingly clear that these individuals are more susceptible

both to contracting COVID-19 and developing severe illness

due to COVID-19. Individuals living and working in care

communities have been extremely vulnerable to COVID-19

due to the communal nature of these settings. Overall,

21% of all U.S. COVID-19 deaths occurred in either residents

or staff of long-term care facilities.

961

Through November 2021, of all people with fee-for-

service Medicare coverage who were hospitalized due to

COVID-19, 27% had a diagnosis of Alzheimer’ disease or

another dementia.

962

Even after adjusting for demographic

characteristics and other COVID-19 risk factors (including

living in long-term care or other care communities),

individuals with Alzheimer’s were at higher risk for

contracting and dying of COVID-19.

963, 964

One study using

data from electronic health records and adjusting for

COVID-19 risk factors found that individuals with

Alzheimer’s had twice the odds of being diagnosed with

COVID-19 as individuals without Alzheimer’s. The risk was

even higher for Black adults with dementia, who had nearly

three times the odds of contracting COVID-19 compared

with White adults with dementia.

964

Another study using

In a study of Medicare-Medicaid dually eligible

beneficiaries diagnosed with Alzheimer’s dementia,

researchers found significant differences in the costs of

care by race and ethnicity.

951

These results demonstrated

that Blacks had significantly higher costs of care than

Whites or Hispanics, primarily due to more inpatient care

and more comorbidities. These differences may be

attributable to later-stage diagnosis, which may lead to

higher levels of disability while receiving care; delays in

accessing timely primary care; lack of care coordination;

duplication of services across providers; or inequities in

access to care. However, more research is needed to

understand the reasons for this health care disparity.

Use of Potentially Avoidable Health

Care Services

Preventable Hospitalizations and Emergency

Department Care

Preventable hospitalizations are one common measure

of health care quality. Preventable hospitalizations are

hospitalizations for conditions that could have been

avoided with better access to, or quality of, preventive and

primary care. Unplanned hospital readmissions within 30

days are another type of hospitalization that potentially

could have been avoided with appropriate post-discharge

care. In 2013, 21% of hospitalizations for fee-for-service

Medicare enrollees with Alzheimer’s or other dementias

Medicare claims data similarly found that beneficiaries

with a diagnosis of dementia were 50% more likely to be

diagnosed with COVID-19 and 60% more likely to die of

COVID-19 than were beneficiaries without dementia, after

adjusting for COVID-19 risk factors.

963

Evidence is still emerging on how health care utilization

changed during the pandemic for individuals with

Alzheimer’s and other dementias. For example, one area of

concern is the effect of not receiving some types of health

care because of service and other limitations related to

COVID-19. However, we do know that individuals

diagnosed with dementia had the highest rates of

hospitalization for COVID-19 compared with individuals

with any of the 20 other common chronic conditions

analyzed (including chronic kidney disease, diabetes,

hypertension and obesity) in 2020.

965

This risk was not

limited to congregate settings such as assisted living

residences and nursing homes. Individuals with a diagnosis

of Alzheimer’s who were living in the community were

more than 3.5 times as likely to be hospitalized for

COVID-19 as individuals without Alzheimer’s who were

living in the community.

965

The COVID-19 Pandemic and Health Care Utilization and Costs

Created from unpublished data from the National 100% Sample Medicare Fee-for-Service Beneﬁciaries for 2019.

413

Race/Ethnicity

Total Medicare

Payments

Per Person Hospital Care Physician Care

Skilled

Nursing Care

Home

Health Care Hospice Care

White $22,306 $5,791 $3,725 $3,297 $1,912 $4,137

Black 27,814 9,006 4,528 4,338 1,970 2,910

Hispanic 25,729 7,836 4,298 3,763 2,371 3,416

Other 22,864 7,260 3,917 3,663 1,959 2,817

Average Annual Per-Person Payments by Type of Service and Race/Ethnicity for Medicare

Beneﬁciaries Age 65 and Older, with Alzheimer’s or Other Dementias, in 2023 Dollars

89Use and Costs of Health Care, Long-Term Care and Hospice

were either for unplanned readmissions within 30 days or

for an ambulatory care-sensitive condition (a condition

that was potentially avoidable with timely and effective

ambulatory — that is, outpatient — care).

952

The total

cost to Medicare of these potentially preventable

hospitalizations was $4.7 billion (in 2013 dollars; $6.1 billion

in 2023 dollars).

952

Of people with dementia who had at

least one hospitalization, 18% were readmitted within

30 days; and of those who were readmitted within 30 days,

27% were readmitted two or more times.

952

Ten percent

of Medicare enrollees had at least one hospitalization

for an ambulatory care-sensitive condition, and 14% of

total hospitalizations for Medicare enrollees with

Alzheimer’s or other dementias were for ambulatory

care-sensitive conditions.

952

Based on Medicare administrative data from 2013 to 2015,

23.5% of diagnosed individuals with Alzheimer’s or other

dementias had at least one preventable hospitalization.

953

Black older adults had a substantially higher proportion of

preventable hospitalizations (31%) than Hispanic and White

older adults (22% for each group).

Based on data from the Health and Retirement Study (HRS)

and Medicare, after controlling for demographic variables,

clinical characteristics (e.g., presence of chronic medical

conditions, number of hospitalizations in the prior year) and

health risk factors, individuals with dementia had a 30%

greater risk of having a preventable hospitalization than

those without a neuropsychiatric disorder (that is,

dementia, depression or cognitive impairment without

dementia).

954

Moreover, individuals with both dementia and

depression had a 70% greater risk of preventable

hospitalization than those without a neuropsychiatric

disorder.

954

Another group of researchers found that

individuals with dementia and a caregiver with depression

had 73% higher rates of emergency department use over

six months than individuals with dementia and a caregiver

who did not have depression.

955

Medicare beneficiaries who have Alzheimer’s or other

dementias and a serious coexisting medical condition (for

example, congestive heart failure) are more likely to be

hospitalized than people with the same coexisting medical

condition but without dementia (Figure 16, page 87).

413

One

research team found that individuals hospitalized with heart

failure are more likely to be readmitted or die after hospital

discharge if they also have cognitive impairment.

956

Another

research team found that Medicare beneficiaries with

Alzheimer’s or other dementias have more potentially

avoidable hospitalizations for diabetes complications and

hypertension, meaning that the hospitalizations could possibly

have been prevented through proactive care management in

the outpatient setting.

957

A third research team found that

having depression, rheumatoid arthritis or osteoarthritis was

associated with higher emergency department use in

Medicare beneficiaries with possible or probable dementia

and two or more other chronic conditions.

958

Differences in health care use between individuals with and

without dementia are most prominent for those residing in

the community. Based on data from the HRS, community-

residing individuals with dementia were more likely to have a

potentially preventable hospitalization, an emergency

department visit that was potentially avoidable, and/or an

emergency department visit that resulted in a hospitalization

than community-residing individuals without dementia.

959

For individuals residing in a nursing home, there were no

differences between those with and without dementia in the

likelihood of being hospitalized or having an emergency

department visit.

Table

90 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Health Care Delivery Models with Skilled

Nursing Facilities

Changes in health care delivery and payment models, such

as the integration of care across different health care

settings and the structure of health care payments, may

impact health care utilization for individuals with

Alzheimer’s disease or other dementias. Research has

shown modest differences in outcomes for skilled nursing

facilities that share providers with at least one hospital

versus those that have dedicated providers within the

skilled nursing facilities. An analysis of Medicare claims data

for 2008 to 2016 showed that skilled nursing facilities that

shared providers with at least one hospital were more likely

to have an Alzheimer’s unit, had fewer 30-day

readmissions, and had more patients successfully

discharged to the community. The skilled nursing facilities

that maintain these relationships have modestly better

outcomes,

960

although there has been a decline in hospital-

skilled nursing facility linkages in the past two decades due

to a shift toward dedicated hospitalists and skilled nursing

facility providers.

Looking to the Future

Absent additional treatment breakthroughs, total

annual payments for health care and long-term care for

people with Alzheimer’s or other dementias are projected

to increase from $360 billion in 2024 to just under

$1 trillion in 2050 (in 2024 dollars). This dramatic rise

includes nearly three-fold increases both in government

spending under Medicare and Medicaid and in out-of-

pocket spending.

A11

Concurrent with this large projected

increase, the Medicare Hospital Insurance Trust Fund,

which covers spending for Medicare Part A (hospital care),

is projected to go into a deficit, based on projections of

growth, overall health care spending trends and

population aging.

966

Potential Impact of Changing the Trajectory of

Alzheimer’s Disease

While there are currently no treatments approved by the

U.S. Food and Drug Administration (FDA) that prevent or

cure Alzheimer’s disease, two drugs that change the

underlying biology of Alzheimer’s disease (aducanumab and

lecanemab) have recently been approved. They were tested

in people with confirmed beta-amyloid accumulation in the

brain who were living with MCI due to Alzheimer’s disease

or mild dementia due to Alzheimer’s. Several other

treatments that target beta-amyloid accumulation and

other well-established brain changes of Alzheimer’s disease

are in late-stage development. These treatments are

promising for changing the course of the disease.

Although these treatments, and others on the horizon,

have the potential to improve quality of life for millions of

adults and their families, there are some considerations.

For example, while lecanemab demonstrated clinically

significant changes in cognition and function, its effects

may be imperceptible to those being treated.

967

Additionally, there is an increased risk of adverse events

with lecanemab and other anti-amyloid therapies, including

amyloid-related imaging abnormalities with edema or

effusions. Another concern is the affordability of treatment

to both payers, such as Medicare, and to individuals and

their families, who may bear out-of-pocket costs due to

deductibles, copayments and coinsurance.

968

Additionally,

the current market price of treatment is high, at $26,500

per person per year.

969, 970

Lack of affordability of Medicare

supplemental insurance is also likely to widen disparities in

access to treatment for Medicare enrollees with low

incomes given these market prices.

From a societal perspective, the number of people

potentially eligible and the total cost of these treatments is

a potential concern. The Centers for Medicare & Medicaid

Services covers Medicare beneficiaries diagnosed with MCI

or Alzheimer’s dementia, and has a physician participating

in a registry for these treatments.

971

Although aducanumab

and lecanemab are for individuals with mild Alzheimer’s

dementia and MCI due to Alzheimer's disease, the actual

number of people who may be eligible is projected to be

much smaller. One group of researchers applied the clinical

trial eligibility criteria to a sample of adults with dementia

or MCI and a positive brain amyloid PET scan and found

that only 8% of the sample would meet the lecanemab

clinical trial inclusion and exclusion criteria.

972

Before the approval of aducanumab and lecanemab,

several groups of researchers had estimated the health

and long-term care cost implications of hypothetical

interventions that either slow the onset of dementia or

reduce the symptoms.

431, 973-975

One analysis assumed a

treatment that delayed onset of Alzheimer’s by five years

would reduce total health and long-term care spending for

people with Alzheimer’s by 33%, including a 44% reduction

in out-of-pocket payments by 2050,

973

and another study

projected a 14% reduction in total health care spending for

people age 70 and older with Alzheimer’s from a one-year

delay, a 27% reduction from a three-year delay and a 39%

reduction from a five-year delay by 2050.

974

Beyond the

single-year costs, the study also found that a delay in onset

may increase total lifetime per capita health care spending

due to longer life associated with delaying the onset of

dementia, although the additional health care costs may be

offset by lower informal care costs. Finally, a third study

estimated that a treatment slowing the rate of functional

decline among people with dementia by 10% would reduce

91Use and Costs of Health Care, Long-Term Care and Hospice

total average per-person lifetime costs by $3,880 in 2015

dollars ($4,759 in 2023 dollars), while a treatment that

reduces the number of behavioral and psychological

symptoms by 10% would reduce total average per-person

lifetime costs by $680 ($834 in 2023 dollars).

431

However,

these studies did not take into account the current market

price for FDA-approved drugs.

Therapies that change the course of the disease may not

be the only way to reduce health and long-term care costs.

The Alzheimer’s Association commissioned a study of the

potential cost savings of early diagnosis,

975

assuming that

88% of individuals who will develop Alzheimer’s disease

would be diagnosed in the MCI phase rather than the

dementia phase or not at all. Approximately $7 trillion could

be saved in medical and long-term care costs for individuals

who were alive in 2018 and will develop Alzheimer’s

disease. Cost savings were the result of (1) a smaller spike in

costs immediately before and after diagnosis during the

MCI phase compared with the higher-cost dementia phase,

and (2) lower medical and long-term care costs for

individuals who have diagnosed and managed MCI and

dementia compared with individuals with unmanaged MCI

and dementia.

The savings from a treatment or an earlier diagnosis may

depend on structural changes to the health care system.

Capacity constraints — such as a limited number of

qualified providers and facilities — could severely restrict

access to new treatments.

976, 977

For example, modeling by

the RAND Corporation in 2017 showed that with an

anti-amyloid therapy for people in the MCI and early

dementia stages of the disease, approximately 2.1 million

individuals with MCI due to Alzheimer’s disease would

develop Alzheimer’s dementia between 2020 and 2040

while on waiting lists for treatment. This model assumed

that the hypothetical treatment would require infusions at

infusion centers and PET scans to confirm the presence of

amyloid in the brain to support initiation of treatment with

an anti-amyloid medication.

Special Report

Mapping a Better Future for

Dementia Care Navigation

“Following a dementia diagnosis too many individuals

and families are left on their own groping in the dark

for services that can help them. I don’t want others to

go through what I did. I lost two to three years searching

for answers. It was time I could have spent diﬀerently.”

— Pamela, individual living with early-onset Alzheimer’s disease

Today's Dementia Care

978

Dementia care is a complex maze encompassing

interactions with primary care providers,

specialists (including those involved in managing

chronic conditions coexisting with cognitive

issues), social services, medication management

and caregiver support (Figure 17).

978

Navigating this maze is diﬃcult and often frustrating for

people living with Alzheimer's or other dementia and their

caregivers. Without a clear path forward, any roadblock or

detour along the way can have considerable ramiﬁcations.

This could materialize as delayed detection, diagnosis

and treatment of early-stage cognitive issues or mild

cognitive impairment (MCI). For caregivers, a detour could

cause them to miss valuable or necessary educational

opportunities, miss connections with community-based

services for respite and behavioral health support or be

unable to locate resources that could help reduce their

stress. Breakdowns in transitions of care between

health care providers and settings limit high-quality,

comprehensive and/or appropriate dementia care, as

evidenced by an increase in emergency room visits and

hospitalizations and decreased quality of life.

979

Today’s

Dementia Care

Patient

Caregiver

Specialist

Social Services

Primary Care Provider

Medication

Caregiver Supports

Figure

Special Report - Mapping a Better Future for Dementia Care Navigation

94 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Caregiver Burden and Stress Are Compounded

by the Complexity of Dementia Care

Unpaid caregivers (sometimes referred to as care partners),

who can be a spouse, family member or friend, provide

extensive, sometimes all-encompassing care for people

living with Alzheimer's or other dementia. In 2023,

11.5 million family members and other caregivers of

people living with Alzheimer's or other dementia provided

an estimated 18.4 billion hours of unpaid help. On average,

this represents nearly 31 hours of care per caregiver per

week or 1,612 hours per caregiver per year.

Caregivers

spend much of this time interacting with the health care

system or learning more about dementia caregiving, and

nearly 2 in 3 (63%) help with health or medical care.

427, 440

Daily health care activities may include scheduling

appointments with health care providers, attending

doctor's visits, and scheduling social and community

support for themselves and the person living with

dementia, such as in-home assistance, adult day programs

or meal delivery. Collectively, performing these activities

and the organization of care across multiple health care

providers can be described as care coordination.

980, 981

The effort expended trying to find their way through the

health care system can add to the already high emotional

and physical stress levels that caregivers experience.

Caregivers need assistance to gather dementia care

information, synthesize it and act upon it in a way that

does not add to their stress level — support that primary

care providers and health systems have historically

been ill-equipped or unprepared to provide. (For more

information on supporting people living with Alzheimer’s

or other dementia and the impact of unpaid caregiving,

see the Caregiving section, page 42.)

Nationwide Movement to Improve Care

While Reducing Strain on Caregivers

For more than a decade, the National Plan to Address

Alzheimer's Disease has included goals to improve health

care quality and expand support for individuals living with

Alzheimer’s disease or other dementia and their families.

982

Recently, the Alzheimer’s Association and the Alzheimer's

Impact Movement (AIM) — a separately incorporated

advocacy affiliate of the Alzheimer's Association —

championed critical legislation to help unravel the health

care maze.

983

This legislation, the bipartisan Comprehensive

Care for Alzheimer's Act, proposed a new approach to

dementia care management covering care coordination

and navigation, caregiver education and support, and

alternative payment models for physician

reimbursement.

983, 984

In July 2023, the Centers for Medicare & Medicaid Services

(CMS) announced the culmination of policy, working group

and legislative efforts like the Comprehensive Care for

What is GUIDE?

986

The Guiding an Improved Dementia Experience

(GUIDE) Model is an eight-year pilot program in

dementia care management designed to help dementia

patients and caregivers better navigate health care and

social support systems to improve dementia care.

Three primary aims of GUIDE are to:

• Improve quality of life for people living with

dementia.

• Reduce strain on their unpaid caregivers.

• Enable people living with dementia to remain in

their homes and communities.

Beginning in July 2024, health care providers

who participate in GUIDE will deliver supportive

services to people living with dementia, including

comprehensive, person-centered assessments and

care plans, care coordination and 24/7 access to a

support line. They will also provide access to a care

navigator to help patients and caregivers access

services and support.

GUIDE acknowledges that current fee-for-service

payment structures prevent many practices from

implementing sustainable dementia care management

programs.

984-986

To overcome this challenge, GUIDE

is testing an alternative payment model (APM) to

incentivize health systems and increase the likelihood

that smaller practices, rural practices and inner-city

health centers that traditionally do not have the

financial resources of larger entities will be able to

deliver this type of program.

984, 986

The APM shifts

payments from a fee for individual services to a

monthly per-patient payment for all services under the

GUIDE Model umbrella, including those not typically

reimbursed by Medicare.

984, 986

Recognizing that some health care providers will face

resource, staffing and capability constraints, a second

GUIDE Model track will engage those who do not have

experience offering comprehensive dementia care

services. The Centers for Medicare & Medicaid Services

will offer these organizations technical assistance,

learning support and a preparatory pre-implementation

year to facilitate their participation in the model. (For

more information about GUIDE and other national

strategies to support caregivers, see the Caregiving

section, page 42, and the Workforce section, page 58.)

Alzheimer’s Act with the introduction of the Guiding an

Improved Dementia Experience (GUIDE) Model.

985

The new

model represents a pivotal opportunity to reshape and

enhance dementia care in the United States.

Navigators as Dementia Health Care Wayfinders

What is Care Navigation?

Care navigation is a critical process that assists patients and

caregivers with various aspects of obtaining health care,

such as helping them understand and overcome the

complex logistics of the health care system.

987-989

The

concept originated in cancer clinics in the 1990s to address

the overwhelming experience cancer patients faced trying

to manage their care.

989

It has since expanded to support

individuals with chronic diseases, including kidney disease,

diabetes and dementia.

987, 990-992

This assistance aims to be holistic and spans both medical

and nonmedical needs. On the medical side, care navigation

encompasses:

988, 991

• Scheduling appointments.

• Coordinating diagnostic testing or follow-ups.

• Providing disease education.

• Facilitating communication and referrals across clinical

specialties and organizations.

• Offering insurance and benefits assistance.

• Medication management.

Beyond medical support, care navigation programs may

connect patients and caregivers to nonmedical resources,

such as education, social services and community support.

991

Providing both types of navigation services underscores

the importance of a comprehensive approach to health

care.

991

By addressing medical and nonmedical needs, care

navigation programs strive to ensure better access to

health care, improve health outcomes and reduce

disparities in care.

990-992

What is Dementia Care Navigation?

Dementia care navigation shares many features of care

navigation programs in other specialties. However,

dementia care navigation emphasizes person-centered,

empowered support throughout the dementia care

journey.

990

This includes addressing nonmedical needs

unique to dementia care, such as behavioral symptom

management and access to community-based services and

supports for individuals with dementia and their

caregivers.

987, 990, 992, 993

The approach remains nimble to

adapt to emerging treatments and diagnostic tests, disease

progression, or other individual needs as they arise.

A key tenet of dementia care navigation is recognizing

the importance of the “care dyad”— the partnership

between people living with Alzheimer’s disease or other

dementia and their caregivers — in all aspects of dementia

care.

987, 992

As described previously, caregivers are prone to

information overload and may feel lost and overwhelmed

as they try to find their way to quality dementia care for

the person living with dementia. Dementia care navigation

programs are primed to offer assistance in this area.

In 2023, an expert workgroup convened by the

Alzheimer’s Association defined dementia care navigation

as “a program that provides tailored, strengths-based

support to persons living with dementia and their care

partners across the illness continuum and settings to

mitigate the impact of dementia through collaborative

problem solving and coaching.”

990

The workgroup outlined seven essential principles for

dementia care navigation, which underscore person-

centered care. According to the workgroup, dementia care

navigation should:

990, 993

1. Be person- and family-centered to ensure collaboration

and enhance engagement.

. Be culturally responsive and address disparities in access

to health care and support services.

Include well-defined roles and responsibilities for all

members of the dementia care navigation team.

Address barriers relating to medical, legal, financial,

emotional and other domains facing the person living

with dementia and their care partners.

Provide coaching, education, and coordination in a

manner that is empowering, solution-focused and

strengths-based.

Focus on the family unit as defined by the person living

with dementia.

Ensure processes and protocols are evidence-based.

By adhering to these principles, dementia care navigation

programs can achieve more coordinated care for patients.

Health systems are already finding that dementia care

navigation can improve health outcomes, decrease the

number of emergency room visits, lower hospital

readmissions, shorten hospital stays and minimize delays

in long-term care placement.

993

What is a Care Navigator?

Care navigators are staff who guide patients and caregivers

through the health care system and help overcome barriers

that prevent them from getting the care they need.

991, 995

As integral members of interprofessional care teams, care

navigators are connectors — liaising, communicating and

facilitating medical and nonmedical needs.

991, 992, 995

Unlike

other care team members, their work spans various settings,

making them crucial touchpoints for care coordination.

991, 992

Common synonyms for “care navigator” include patient

navigator, care consultant and care team coordinator.

990, 992, 995

“ Due to high incidence, duration

and medical-social complexity,

dementia is an ideal candidate for

patient-centric health care delivery

models such as care navigation.”

990

Special Report - Mapping a Better Future for Dementia Care Navigation

96 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Prioritizing Person-Centered Care

in Dementia Care Navigation

990, 992-994

Person-centered care is the foundation of quality

dementia care. It challenges the traditional medical

model of care that tends to focus on processes,

schedules, and staff and organizational needs. Instead,

person-centered care stresses knowing the person

living with dementia, including their values, beliefs,

interests, abilities, likes and dislikes — both past

and present. A person-centered approach to care

assures the individual living with dementia and their

caregivers that health professionals know the

person, understand the person’s unique needs and

circumstances, and put these needs at the forefront in

making decisions and directing the person’s care.

Anchoring dementia care navigation in the principles

of person-centered care prioritizes the humanity of

each individual living with dementia while also

committing to a standard of care that elevates their

dignity, autonomy and quality of life at every stage.

Qualifications, training and time dedicated to the care

navigator role vary based on the care team structure and

the health system. They range from paraprofessionals to

licensed health care professionals, including nurses,

physician assistants, social workers, community health

workers or even former caregivers.

991

Care navigators,

including dementia care navigators, frequently share the

racial, ethnic or cultural background of those they assist,

enhancing the delivery of culturally competent care and

building stronger patient-navigator relationships.

987, 991

Dementia care navigators work with care dyads, but

evidence suggests that the primary recipients of navigation

services are caregivers.

987

In addition to the typical

navigation services, dementia caregivers frequently look to

care navigators for emotional support.

987

Through these

interactions, navigators and caregivers establish trusting,

long-term relationships.

In summary, care navigators are pivotal in helping patients

and caregivers find their way through an increasingly

intricate dementia care landscape.

Awareness and Understanding of Dementia

Care Navigation: Caregiver and Health Care

Workforce Surveys

This year’s Special Report takes a deeper look into how

dementia caregivers interact with the health care system

and how the non-physician health care workforce currently

employs care navigation. To better understand these

aspects of dementia care, the Alzheimer’s Association

commissioned Versta Research to conduct surveys of

(1) current or recent caregivers of adults age 50 or older

with cognitive issues (referred to in this report as dementia

caregivers) and (2) health care workers who are likely to

assume care navigation responsibilities in their role,

including nurses, social workers, and community health

workers (referred to in this report as the non-physician

health care workforce).

Key Findings

Dementia Caregivers

Dementia caregivers experience difficulty and stress

interacting with the health care system.

• Seven in 10 dementia caregivers (70%) report that

coordinating care is stressful. More than half of

caregivers (53%) said navigating health care is difficult.

Two in 3 dementia caregivers (66%) also have difficulty

finding resources and support for their needs.

Cost and care coordination are top stressors for

dementia caregivers.

• Two in 5 caregivers (42%) cite cost as a stressor in

getting care for their recipient. More than 1 in 3

caregivers report coordinating care with multiple

doctors (36%), securing appointments (35%) and getting

help taking a break (35%) as leading stressors in

navigating care for their recipient.

• Despite these and other stressors, only half of the

caregivers (51%) report ever talking with a health care

professional to help address their challenges.

Care navigation is an unfamiliar term for most

dementia caregivers, although many receive help akin

to care navigation.

• Three in 4 dementia caregivers (75%) report little or

no familiarity with the term “care navigator.” Half of

caregivers (50%) say they receive help with dementia

health care, support and services for the care recipient

from someone within their physician’s office or hospital.

• Nurses (42%) and social workers (35%) most often

provide navigation help to dementia caregivers.

Overwhelmingly, caregivers would welcome dementia

care navigator support and believe it would benefit both

the person living with dementia and the caregiver.

• More than 4 in 5 dementia caregivers (85%) say having

access to a care navigator would influence their choice

of dementia health care provider for the person they

care for.

• Three in 5 dementia caregivers (61%) cite improvement

in quality of life for their care recipient as a benefit of

having a care navigator. Two in 5 caregivers (43%)

believe access to a care navigator would improve the

overall health of their care recipient.

• Three in 5 dementia caregivers say less stress (62%)

and more peace of mind (62%) would be valuable

outcomes of having a care navigator. More than half

(56%) say having a care navigator could help them be

better caregivers.

Top services that would be helpful to dementia caregivers

include around-the-clock support, care coordination and

help understanding their care recipient’s condition.

• The vast majority of dementia caregivers (97%) say

they would find navigation services helpful.

• Nearly 2 in 5 dementia caregivers (36%) say a 24/7

helpline would be valuable in helping navigate care for

someone living with Alzheimer’s or other dementia.

Coordinating care and communication between

different specialists (34%) and getting help in

understanding their care recipient's condition (34%)

are also viewed as valuable services.

• Almost 1 in 3 dementia caregivers say it would be

helpful to have assistance with insurance or public

benefits (32%), scheduling appointments (31%), caregiver

training (31%), managing behavioral symptoms (31%),

understanding the health care system (30%) and finding

services to help with respite care (30%).

• The most helpful community-based resources cited

to help dementia caregivers include local caregiver

support groups (41%), respite programs (38%) and

availability of financial resources in the community (37%).

Non-Physician Health Care Workforce

The findings below reflect the views of the non-physician

health care workforce currently providing navigator-type

services to patients and caregivers in addition to the

other responsibilities of their role. The health care

workers surveyed included medical professionals (nurse

practitioners, physician assistants and registered nurses)

and nonmedical professionals (health care social workers,

community health workers and home health aides).

Most health care workers who provide navigator-type

services are familiar with the concept of care navigation,

even if that is not their focus.

• Three in 4 survey respondents (77%) are familiar with

the term “care navigator.” They spend roughly half their

time providing navigator-type services, even if they do

not refer to themselves as care navigators.

• Nearly 2 in 3 survey respondents (62%, predominantly

nonmedical professionals) help people living with

Alzheimer’s or other dementia and caregivers

understand the health care system, and more than 1 in

2 health care workers (57%) say they coordinate care

and communication with specialists.

• The most frequently provided navigator services are

referrals to community support services and resources

(75%), helping with emotional and cultural support

(68%), and screening for safety needs (66%).

Most health care workers providing navigator-type

services have experience in other medical specialties,

with few focusing exclusively on dementia.

• Four in 5 survey respondents (80%) have navigation

experience in non-dementia medical specialties, and

fewer than 1 in 10 (7%) focus primarily on offering

navigator-type support and services to people living

with dementia.

• Most providing navigation services (93%) feel at least

somewhat knowledgeable about MCI, Alzheimer’s

disease and other dementia but only 1 in 3 (36%) report

they are very knowledgeable.

• Nearly 9 in 10 (86%) feel knowledgeable about directing

patients with dementia and caregivers to appropriate

health care resources, but less than 1 in 3 (30%) feel

very knowledgeable. Four in 5 (82%) feel knowledgeable

about directing patients with dementia and caregivers

to community resources, but only 31% say they are very

knowledgeable.

Training in dementia care navigation is lacking and not

standardized.

• Three in 4 health care workers providing care navigation

(75%) indicate they received no formal training in

dementia care navigation.

• Those who did receive training were predominantly

nonmedical professionals, receiving a median of

30 hours of formal training. Medical professionals

who were trained received a median of 20 hours of

formal training.

Nonmedical professionals are viewed as best suited to help

people with dementia and their caregivers navigate care.

• Nine in 10 health care workers offering navigation

support (92%) say social workers, community health

workers or home health aides are best suited to help

people living with dementia and their caregivers

navigate health care.

Special Report - Mapping a Better Future for Dementia Care Navigation

98 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Health care workers say more can be done to help

patients and families navigate dementia care but point out

current barriers.

• Six in 10 survey respondents (60%) believe that the

U.S. health care system is not effectively helping

patients and their families navigate dementia care.

• Nearly half surveyed (46%) say their organizations do

not have a clearly defined process for care coordination

and clinical pathways for patients with MCI, Alzheimer’s

disease or other dementia.

• More than 3 in 4 (77%) identified a lack of community-

based resources as a barrier, and 44% viewed it as the

greatest barrier. Seven in 10 (70%) called out current

reimbursement as a barrier, with 41% saying this was

the greatest barrier.

• Nearly 9 in 10 (87%) say developing alternative

payment models is important in providing future care

coordination for people diagnosed with dementia.

Survey Design and Research Methods

The surveys were designed to elicit in-depth responses

from both dementia caregivers and the non-physician

health care workforce about the current state and

challenges of navigation in dementia care.

The dementia caregiver survey analyzed distinct aspects

of the caregiving journey, including:

• Time spent on caregiving and top stressors.

• Challenges in navigating health care services.

• Challenges in locating or accessing community

supports and services.

• Awareness of dementia care navigators and/or

navigation programs.

• Which health care workers help with care navigation.

• Communication preferences for care navigation.

• Value of navigation services and community-based

resources.

• Anticipated benefits and outcomes of care navigation.

The non-physician health care workforce survey covered

various aspects of care navigation, including:

• Familiarity with navigator terminology.

• Focus areas for care navigation services being delivered.

• Frequency and preferred method of communication.

• Perceived value of care navigation.

• Which health care workers deliver navigation services.

• Barriers to care navigation.

• Background and training in care navigation.

Dementia Caregiver Survey

A survey of 1,533 U.S. adults who were current or recent

unpaid caregivers for a relative or friend age 50 or older

experiencing problems with thinking, understanding, or

remembering things or who sometimes have physical

problems or behavioral changes was conducted from

November 20, 2023, through December 20, 2023. The

sample included White (n=629), Hispanic (n=309), Black

(n=308), Asian (n=206) and Native American (n=24)

caregivers and caregivers who identified as belonging to

other ethnic or racial groups (n=57). While Native

Americans were oversampled in an attempt to get

subgroup estimates, the sample size was still insufficient;

thus, Native American respondents were included in the “all

caregivers” grouping. Respondents were recruited via

non-probability online panels used exclusively for research,

with full population screening data weighted to match U.S.

Census data on age, gender, income, education and race/

ethnicity to ensure accurate representation of the

caregiving population and to establish weighting

benchmarks for demographic oversamples. The survey was

offered in both English and Spanish. Differences noted in

the report between racial and ethnic groups were tested

and found to be statistically significant at the p<.05 level.

Non-Physician Health Care Workforce Survey

A survey of 1,204 U.S. health care workers was conducted

from November 13, 2023, through December 6, 2023.

The survey collected the views of medically-trained and

nonmedically-trained professionals who perform navigation

duties, regardless of whether they describe themselves as

navigators or hold a formal navigator position at their

organization.

A17

For brevity, medically-trained professionals

are referred to as “medical professionals” and nonmedically-

trained professionals as “nonmedical professionals”

throughout the remainder of the report. The report refers

to the combined group of medical and nonmedical

professionals as “health care workers.”

Medical professionals (n=708) included:

• Registered nurses (RN, n=526).

• Nurse practitioners (NP, n=145).

• Physician assistants (PA, n=46).

Nonmedical professionals (n=503) included:

• Social workers (MSW, n=458).

• Community health workers (CHW, n=32).

• Home health aides (HHA, n=14).

Health care workers are classified as both medical and

nonmedical professionals if they indicate both types of

training (e.g., RN with MSW degree). Because of this,

the total of the numbers of medical and nonmedical

professionals shown above exceeds 1,204. Likewise, if

health care workers are classified as having more

than one role in the medical or nonmedical category

(e.g., community health worker and home health aide),

they are included in the count for each role. As a result, the

total of the specific roles in the medical and nonmedical

categories exceeds the 708 and 503 shown above.

Dementia Caregiver Survey Results

Dementia Caregiving is a Demanding Job That

Can Last for Years

People with memory and thinking problems see an average

of four different doctors every year, with more than 1 in 4

(27%) seeing five or more doctors annually. Scheduling and

managing doctor's visits can be time-consuming, and more

than 1 in 3 dementia caregivers (35%) coordinate health

care needs (communicating with doctors, taking care of

insurance, getting appointments, picking up medication,

etc.) at least once daily, with some caregivers saying they

coordinated care several times per day.

Caregivers for people with Alzheimer's and other dementia

provide approximately 26 hours of care per week. This is

consistent with other reports that caregivers spend almost

31 hours per week on caregiving.

Additionally, a large

majority of dementia caregivers surveyed spend years

providing care, with nearly 1 in 2 acting as a caregiver for

one to three years and almost 1 in 3 spending four years

or more as a caregiver.

Black Caregivers Report More Time on Caregiving

Responsibilities Than Other Groups

The need to coordinate health care is common for

dementia caregivers, and this is especially true for Black

and Hispanic caregivers, who are more likely to coordinate

health care at least once per day than White caregivers

(43%, 45%, and 31%, respectively). This likely influences the

overall time spent providing care, with Black caregivers

reporting the most time at 30 hours per week followed

by White caregivers (27 hours), Hispanic caregivers

(25 hours) and Asian caregivers (19 hours).

Dementia Caregivers Experience Diﬃculty and

Stress Interacting With the Health Care System and

Addressing Their Own Needs

A majority of caregivers surveyed (70%) indicated that

coordinating care is stressful. More than half (53%) said

navigating health care for the person they care for was

difficult. Finding resources and support for their needs is

also a challenge for 2 in 3 caregivers (66%; Figure 18).

Black Caregivers Report Less Stress and Diﬃculty

With Dementia Care

Black caregivers find coordinating dementia care somewhat

less difficult and stressful than all other groups. Three in 5

Black caregivers (58%) reported that coordinating care

was somewhat or very stressful compared with Hispanic

caregivers (71%), White caregivers (72%) and Asian

caregivers (76%). When asked about difficulty coordinating

health care, Asian caregivers expressed the greatest

challenges, with 7 in 10 (68%) indicating that they found it

somewhat or very difficult (vs. Black caregivers, 37%; White

caregivers, 54%; and Hispanic caregivers, 57%). Additionally,

Black caregivers have less difficulty finding support for their

own needs as a caregiver than other groups (52% report

somewhat or very difficult vs. White caregivers, 66%;

Hispanic caregivers, 70%; and Asian caregivers, 77%).

Figure

60%

40%

20%

Stress of Coordinating Health Care*

Diﬃculties and Stressors That Caregivers Experience

Very

stressful

Not too

stressful

Somewhat

stressful

Not at all

stressful

52%

24%

18%

70% Stressful 30% Not Stressful

Very

diﬃcult

Somewhat

easy

Somewhat

diﬃcult

Very

easy

53% Diﬃcult 47% Easy

Very

diﬃcult

Somewhat

easy

Somewhat

diﬃcult

Very

easy

66% Diﬃcult 34% Easy

23%

28%

42%

Diﬃculty of Finding Caregiver Support*

44%

40%

Diﬃculty of Navigating the

Health Care System

*Percentages of bars may not total the percentages above due to rounding.

Special Report - Mapping a Better Future for Dementia Care Navigation

100 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Worries About Costs and Coordinating Health Care

Are Top Stressors

The most often cited worry for dementia caregivers is cost

(42% of caregivers), followed by the stress of coordinating

with multiple doctors (36%), securing appointments (35%)

and getting help taking a break (35%; Figure 19). Finding

appropriate doctors (32%) rounded out the top five

stressors. When viewed together, these top five stressors

underscore challenges in coordinating dementia health

care without greater assistance from a care navigator.

Asian caregivers report worries about costs and expenses

(51%) as the top stressor, more so than other groups

(Black caregivers, 37%; Hispanic caregivers, 42%; White

caregivers, 41%). Asian caregivers also are more likely to

report stress in finding appropriate doctors (41%) and

understanding recommended treatments (30%) than other

groups. Finding respite care is the top stressor for Black

caregivers (39%), and concerns about cost and expenses

are top of mind for Hispanic caregivers.

Despite these current stressors, only half of the dementia

caregivers surveyed (51%) have ever talked with a health

care professional about challenges finding their way

through the health care system or asked for help with

dementia care.

Although Largely Unfamiliar With the Term

“Care Navigator,” Dementia Caregivers Receive Help

Navigating Care

Three in 4 dementia caregivers surveyed report little or no

familiarity with the term “care navigator,” with 30% saying

they know very little about the term and 45% reporting

they have never heard of the term. Yet half of caregivers

(50%) receive help with dementia health care, support and

services for the care recipient from someone within their

physician's office or hospital. These health care workers

may or may not be serving in a formalized navigator role.

Nurses (42%) or social workers (35%) most often provide

navigation help to dementia caregivers, with physician

assistants (18%), community health workers (14%), other

caregivers (12%) or actual care navigators (7%) providing

health care guidance to a lesser degree (Figure 20).

Nearly 7 in 10 Black caregivers (68% ) report receiving help

navigating care. Asian caregivers (52%), Hispanic caregivers

(51%), and White caregivers (47%) also report currently

receiving help navigating care.

Figure

Worries about cost and expenses

Coordinating with multiple doctors

Scheduling and helping with appointments

Getting help to take a break

Finding appropriate doctors

Finding support services and resources

Feeling unprepared to be a caregiver

Transportation to doctor visits

Getting care for urgent needs

Contacting administrators or billing

Getting prescriptions

Understanding recommended treatments

Lack of knowledge about the disease

Finding clinical trials

Stressors When Getting Health Care for Care Recipients

36%

35%

32%

30%

29%

24%

22%

20%

18%

42%

101

When working with staff helping with care navigation, a

majority of caregivers would prefer that they communicate

via more traditional channels, with nearly 2 in 3 saying

a phone call was best and 1 in 2 saying they desired

in-person communication during a visit (Figure 21).

Overall, very few caregivers wanted to communicate

through electronic health record (EHR) messaging or

a patient portal (12%).

Navigator’s Professional Role

Nurse

42%

Social

worker

35%

Physician

assistant

18%

Community

health worker

14%

Caregiver

12%

Navigator

Not sure

Other

50%

40%

30%

20%

10%

In-person

visits

Electronic health

record messaging or

patient portal

EmailText

messaging

Video

conferencing

Phone calls

Preferred Channels for Communicating With a Care Navigator

61%

49%

44%

40%

12%

28%

70%

60%

50%

40%

30%

20%

10%

Figure

Special Report - Mapping a Better Future for Dementia Care Navigation

102 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Caregivers for people living with dementia stressed that it is

essential for care navigators to understand their ethnic or racial

background. Significantly, 9 in 10 Asian, Black, and Hispanic

caregivers felt it crucial for navigators to be aware of the

background of the person they are caring for (Figure 22).

In contrast, White caregivers placed less importance on this

shared experience. Among White caregivers who received

important for navigators to understand (Figure 23). Four in 5

health care workers believe their organization has an effective

understanding of the racial, ethnic, and cultural backgrounds

and experiences of people with dementia and their caregivers.

Cultural Competency is Fundamental for Dementia Care Navigation

navigation help, 84% believed the person helping them had a

good or excellent grasp of their care recipient’s background,

a confidence level higher than that for other racial and ethnic

groups. Confidence in the cultural competency of the person

providing navigation assistance was lower for all other groups, and

lowest for Asian caregivers, with only 54% rating understanding

of the person helping them as “good” or “excellent.”

100%

80%

60%

40%

20%

88%

54%

Asian

84%

74%

HispanicBlack

88%

68%

White

57%

84%

Important for care navigator to understand the ethnic or racial background of the person being cared for

Provider of navigator-type service rated “good” or “excellent” on understanding the ethnic or racial background of the person being cared for

Access to Care Navigators With Cultural Competency by Race/Ethnicity of Care Recipient

Health care workers surveyed echoed that empathy for racial,

ethnic and cultural backgrounds and experiences is key. They

overwhelmingly agreed that effective dementia care navigation

requires cultural competence, with 99% saying that it is

Very

important

82%

Somewhat

important

17%

Not too

important

Not at all

important

<1%

99% Important 1% Not Important 81% Eﬀective 19% Not Eﬀective

Very

eﬀective

24%

Somewhat

eﬀective

57%

Not too

eﬀective

17%

Not at all

eﬀective

Health Care Professionals’ Views on Cultural Competence

Importance of Navigators Understanding the

Cultural, Racial and Ethnic Backgrounds and

Experiences of Dementia Patients and Caregivers

Eﬀectiveness of Organization in Understanding the

Cultural, Racial and Ethnic Backgrounds and

Experiences of Dementia Patients and Caregivers

100%

80%

60%

40%

20%

Figure

103

Caregivers Welcome Dementia Navigation Support

Overwhelmingly, dementia caregivers surveyed would

welcome navigator support, with 4 in 5 caregivers (85%)

indicating that having access to a care navigator would

influence their choice of a dementia health care provider

for the person they care for. This sentiment was strongest

among Black caregivers, with 52% saying it would influence

their choice a great deal, followed by Hispanic caregivers

(44%), White caregivers (43%) and Asian caregivers (38%).

Less Stress and Better Outcomes are Biggest

Beneﬁts of Working With a Dementia Care Navigator

Caregivers see improvement in quality of life (61%) and

health (43%) for the person they care for as being the

greatest positives of working with a dementia care

navigator (Figure 24). Other benefits for the person living

with Alzheimer’s or other dementia include less depression

(35%), longer period of time at home (35%) and fewer

behavioral symptoms (26%).

For themselves, 2 in 5 caregivers surveyed see less stress

(62%) and more peace of mind (62%) as the most valuable

outcomes of having a navigator as part of the dementia

care team (Figure 25). They also think a care navigator

could help them be better caregivers (56%), improve their

mental health (45%) and help them find opportunities to

take a break from their care responsibilities (38%). Overall,

very few dementia caregivers believed a care navigator

would make caregiving less expensive (18%); however,

there was a clear difference in this view among caregivers

from different racial and ethnic groups. Nearly twice as

many Asian, Black and Hispanic caregivers thought working

with a navigator could make caregiving less expensive

compared with White caregivers (26%, 23% and 22%,

respectively, vs. 14%)

Around-the-Clock Support, Care Coordination and

Help Understanding the Care Recipient’s Condition

Viewed as Most Valuable Navigation Services Overall

Nearly all dementia caregivers (97%) say they would find

navigation services helpful. Almost 2 in 5 caregivers (36%)

said a 24/7 helpline to call is the top service a care

navigation program should provide (Figure 26).

Coordinating care and communication between different

specialists (34%) and helping to understand their care

recipient’s condition (34%) are also viewed as valuable

services. Overall, caregivers see value in a mix of medical

and nonmedical navigation services. Other helpful services,

according to 1 in 3 caregivers, included:

• Assistance with insurance or public benefits (32%).

• Help with scheduling appointments (31%).

• Training on how to care for someone with thinking or

memory problems (31%).

• Help managing behavioral symptoms (31%).

• Help understanding the health care system (30%).

• Help finding services to take a temporary break from

caregiving (30%).

Anticipated Outcomes for Care Recipients of a Navigator Program

70%

60%

50%

40%

30%

20%

10%

Improvement

in quality of

daily living

61%

Less

depression

35%

43%

Overall

improvement

in health

35%

Longer period

of time living

at home

22%

Fewer

emergency

room visits

21%

Fewer

hospitalizations

14%

Fewer

illnesses

Not sure

26%

Fewer behavioral

symptoms (aggression,

anger, etc.)

None

Figure

Special Report - Mapping a Better Future for Dementia Care Navigation

104 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

The findings highlight services more relevant to dementia

care navigation than care navigation for other health

conditions, such as respite services, managing behavioral

symptoms and support for unanticipated needs outside of

regular clinic hours in the form of the helpline. Typically,

community-based organizations provide these services.

Although 1 in 3 caregivers (30%) have received nonmedical

supports and services, such as meal delivery, home care

aides, or companions to give time away from caregiving,

only 17% found these resources with the help of a person

providing care navigation services.

Community-Based Resources May Address

Some Stressors

Community-based resources and services can play an

important role in supporting caregivers. While many of

these services are delivered outside traditional health care

settings, finding ways to connect caregivers to these

resources should be viewed as an essential deliverable in

dementia care navigation.

The three most helpful community-based resources

cited by caregivers in the survey were local caregiver

support groups (41%), respite programs (38%) and

availability of financial resources in the community (37%).

These resources could alleviate some of the top stressors,

like worries about costs and expenses and getting help

taking a break (Figure 27).

Caregivers of all races and ethnicities surveyed pointed to

connections to local adult daycare programs as a valuable

navigation service (Asian, 45%; Black, 36%; Hispanic, 35%;

White, 28%).

Non-Physician Health Care Workforce

Survey Results

“Care Navigator” is a Known Term in Health Care

Three in 4 health care workers who provide navigator-type

services (77%) are familiar with the term “care navigator.”

Nonmedical professionals (CHW, HHA or MSW) were the

most familiar, with 4 in 5 (83%) indicating they had heard

this term before.

Many Professionals Already Provide Navigation

Services, but This is not Their Focus

Health care workers participating in the survey spend

roughly half (53%) their time providing navigator-type

services, even if they do not refer to themselves as care

navigators (Figure 28, page 106). Nearly 1 in 3 of the

patients they provide navigation services for have cognitive

issues, including MCI, Alzheimer’s disease or other

dementia (Figure 28, page 106). The vast majority of

respondents (93%) say that caregivers or family are

almost always involved in discussions of navigation-type

services — with or without the person they are caring for.

Anticipated Outcomes for Caregivers of a Navigator Program

Reducing

the stress of

caregiving

62%

Helping me

be a better

caregiver

56%

Not sure

70%

60%

50%

40%

30%

20%

10%

62%

Giving me

more peace

of mind

45%

Improving

my mental

health

Making

caregiving less

time-consuming

34%

18%

Making

caregiving less

expensive

None

38%

Allowing me to

take a break from

caregiving

25%

Improving my

physical health

Figure

105

Having a 24/7 support or help line to call

Coordinating care and communication between diﬀerent specialists

Help understanding the care recipient's condition

Assistance with insurance or public beneﬁts

Help with scheduling appointments

Training on how to care for someone with thinking or memory problems

Help managing behavioral symptoms

Help understanding the health care system

Help ﬁnding services to take a temporary break from caregiving

Helping with emotional and cultural support

Help monitoring medications

Assessing whether a medical care plan is on track

Referrals to community support services and resources

Arranging transportation or meal delivery

Help contacting health care administrators or billing

Screening for safety needs

Help with planning for end-of-life decisions

Care Navigator Services That Would Be Valuable to Dementia Caregivers

34%

32%

31%

30%

29%

28%

27%

26%

23%

22%

21%

36%

Community-Based Services That Would Be Valuable to Dementia Caregivers

Local

caregiver

support

groups

41%

Local respite

programs that

provide temporary

care to give

caregivers a break

38%

Financial

resources

in your

community

37%

Local

programs,

workshops and

classes

35%

Disease

information

including a

24/7 helpline

26%

Legal help,

including elder

law attorneys

23%

Local adult

day-care

programs

32%

50%

40%

30%

20%

10%

Figure

Special Report - Mapping a Better Future for Dementia Care Navigation

106 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Nearly all health care workers in the survey provide

support for medical and nonmedical needs, with only 5%

focusing exclusively on one type of need (Figure 29). The

most frequently provided navigator services are referrals

to community support services and resources (75%),

helping with emotional and cultural support (68%) and

screening for safety needs (66%) (Figure 30). Of those top

navigation services, referrals to community support are

more often provided by nonmedical professionals, whereas

screening for safety needs is most often performed by

medical professionals.

Unsurprisingly, medical professionals tend to offer more

medically-related navigation services, such as screening for

safety, assessing if the medical plan is on track, monitoring

medications and staffing helplines (Figure 30). They also

viewed these services as more valuable to patients and

families than nonmedical professionals did. Nonmedical

professionals, on the other hand, report that they are more

often involved in making referrals to community resources,

disease education, assisting caregivers looking for respite

care, arranging transportation or meal delivery and

insurance-related support such as working with billing or

insurers (Figure 30).

Further illustrating the complicated nature of dementia

care and the need for navigation as outlined earlier in the

Special Report, health care workers also report that they

are heavily involved in guiding patients and families

through the health care system. Nearly 2 in 3 health care

workers (62%; predominantly nonmedical professionals)

help patients and caregivers understand the health care

system, and more than 1 in 2 health care workers say

they coordinate care and communication with specialists

(Figure 30).

Greatest Value From Navigators is in Connections to

Community Support and Services

More than 2 in 3 health care workers (68%) said the top

service provided, referrals to community support services

and resources, was the most valuable navigation offering

(Figure 31). The top five most valuable navigation services

according to survey respondents were:

• Referrals to community support services and

resources (68%).

• Training on how to care for someone with

dementia (63%).

• Help managing behavioral symptoms (62%).

• Helping with emotional and cultural support (59%).

• Coordinating care and communication between

different specialists (59%).

Time Spent on Navigator-Type Services and Percentage of Patients with Cognitive Issues Receiving Navigation Services

Professional Time Spent Providing

Navigator-Type Services

Patients Receiving Navigation Services

Who Have Mild Cognitive Impairment,

Alzheimer’s Disease or Other Dementia

Mean percentage of time

Mean percentage of patients

53%

32%

Figure

107

More than half of respondents also said that finding

respite services to take a temporary break from caregiving,

understanding the health care system, and screening for

safety needs were valuable.

Interestingly, there were two notable disconnects

between what health care workers perceive as valuable

and what they deliver in the form of navigation services.

The first is training for family members on how to care for

someone with dementia. Whereas 63% of survey

respondents rated this as valuable, only 2 in 5 (40%)

provide such training. The second disconnect was in the

utility of a 24/7 helpline. This feature of navigation was

valued by 1 in 3 health care workers (33%), yet only 15%

are currently providing this service.

70%

60%

50%

40%

30%

20%

10%

83% Medical 79% Nonmedical

Only

medical

needs

Both

medical and

nonmedical

needs

Mostly

medical

needs

Mostly

nonmedical

needs

Only

nonmedical

needs

19%

62%

14%

Focus of Dementia Care Support Provided

Figure

Referrals to community support services and resources

Helping with emotional and cultural support

Screening for safety needs

Help understanding the health care system

Help managing behavioral symptoms

Coordinating care and communication between diﬀerent specialists

Help understanding mild cognitive impairment or dementia

Help monitoring medications

Help with planning for end-of-life decisions

Assessing whether a medical care plan is on track

Help ﬁnding services to take a temporary break from caregiving

Arranging transportation or meal delivery

Assistance with insurance or public beneﬁts

Training on how to care for someone with dementia

Help contacting health care administrators or billing

Providing support via a 24/7 help line

Services Provided That Support Dementia Care for Patients and Their Families

68%

66%

62%

60%

57%

53%

52%

50%

44%

43%

41%

40%

25%

15%

75%

Provided especially by medical professionals Provided especially by nonmedical professionals

Special Report - Mapping a Better Future for Dementia Care Navigation

108 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Nonmedical Professionals Communicate More

Frequently With Patients and Families

Two in 5 nonmedical professionals (39%) report they

connect with individuals living with dementia and their

families every two weeks, and 1 in 3 (32%) make contact

every month. Medical professionals typically communicate

with patients every two weeks (28%) and every month

(24%). However, medical professionals report that they are

more likely to communicate every 3 months and 6 months

than nonmedical professionals (15% vs. 7% and 5% vs. 1%).

This distinction between medical and nonmedical

professionals may be a result of the cadence of follow-up

visits with a physician, and medical professionals may be

more likely to incorporate navigation services into a routine

visit. Across groups, 1 in 4 health care workers (23%)

discuss dementia care services only as needed.

On average, nonmedical professionals interact most often

with patients and families:

• All health care workers: 12 times per year.

• All medical professionals (NP, PA or RN): 11 times

per year.

• All nonmedical professionals (CHW, HHA or MSW):

14 times per year.

Health Care Workers Providing Navigation-Type

Services Use Traditional Communication Channels

Instead of Newer Technologies

In-person visits and phone calls are by far the most

common channels for dementia care navigation and

dramatically outpace usage of newer technologies like video

conferencing, email, patient portals and text messaging.

Care navigation services are 3 to 4 times more likely to be

provided in-person or by phone than other channels, and

most communication still occurs at in-person visits.

There are some distinctions in how medical and nonmedical

professionals deliver navigation services. Medical

professionals communicate more often via a patient portal

than nonmedical professionals (19% vs. 14%). The most

striking difference is how nonmedical professionals appear

to have gravitated toward digital communication, possibly

because they engage with patients and families more

regularly. Nonmedical professionals use video conferencing

and email to reach patients and families twice as often

as medical professionals (29% vs. 11% and 26% vs. 12%,

respectively). Nonmedical professionals also report using

a phone call to communicate more often than medical

professionals (76% vs. 62%).

Figure

Referrals to community support services and resources

Training on how to care for someone with dementia

Help managing behavioral symptoms

Helping with emotional and cultural support

Coordinating care and communication between diﬀerent specialists

Help ﬁnding services to take a temporary break from caregiving

Help understanding the health care system

Screening for safety needs

Help understanding mild cognitive impairment or dementia

Help monitoring medications

Help with planning for end-of-life decisions

Assistance with insurance or public beneﬁts

Assessing whether a medical care plan is on track

Arranging transportation or meal delivery

Providing support via a 24/7 help line

Help contacting health care administrators or billing

Most Valuable Services in Supporting Dementia Care for Patients and Their Families

63%

62%

59%

57%

54%

50%

49%

47%

37%

36%

33%

24%

68%

Seen as especially important by medical professionals

109

Training in Dementia Care Navigation is Lacking and

Not Standardized

Three in 4 health care workers providing navigation services

indicated that they received no formal training in dementia

care navigation. The 1 in 4 health care workers who did

receive some kind of training were predominantly

nonmedical professionals and received a median of 30 hours

of formal training. On the other hand, medical professionals

received a median of 20 hours of formal training.

If they received formal training, more than 1 in 2 surveyed

received it from their employer (59%), not from colleges,

universities or other outside programs, such as a certificate

or public health program. Except for nonmedical professionals

being more likely than medical professionals to have exposure

to navigation training during college or university coursework

(47% vs. 23%), there were no differences between the

groups surveyed.

Dementia Care is Rarely the Sole Focus of

Navigation Activities, but Health Care Workers Still

Feel Knowledgeable

Four in 5 health care workers (80%) have navigation

experience in non-dementia medical specialties, and fewer

than 1 in 10 (7%) focus primarily on providing navigator

support and services to people living with dementia. Most

providing navigation services (93%) feel at least somewhat

knowledgeable about MCI, Alzheimer’s disease and other

dementia but only about 1 in 3 (36%) report they are

very knowledgeable.

Central to effective, valuable navigation that benefits

patients and families is a strong knowledge of dementia

care support and resources in health care settings and the

community. Nearly 9 in 10 health care workers (86%) feel

knowledgeable about directing dementia patients and

caregivers to appropriate health care resources, but fewer

than 1 in 3 (30%) report feeling very knowledgeable. Four

in 5 (82%) feel knowledgeable about directing dementia

patients and caregivers to community resources, but only

31% say they are very knowledgeable.

When the group is separated into medical or nonmedical

professionals, nonmedical professionals report feeling

better equipped and more knowledgeable than medical

professionals about health care resources (93% vs. 81%) and

community-based resources (92% vs. 75%). Understandably,

nonmedical professionals feel more capable, given that

they are more likely to communicate regularly with

patients and caregivers and could have received formal

training on delivering navigation services. Additionally,

some health care workers categorized as nonmedical

professionals in this survey, such as community health

workers or home health aides, may have direct exposure or

interaction with resources in the community.

A crucial component of dementia care today is familiarity

with new and emerging treatment options and awareness

of clinical trials. Nearly all health care workers surveyed

believe it is important to be familiar with new treatments

(98%) and with clinical trial options (93%).

Figure

82% Eﬀective 18% Not Eﬀective

61%

Very

eﬀective

Not too

eﬀective

Somewhat

eﬀective

Not at all

eﬀective

35%

70%

60%

50%

40%

30%

20%

10%

50%

10%

40% Eﬀective 60% Not Eﬀective

Health Care System’s Eﬀectiveness at Helping

Dementia Patients and Families Navigate Health Care

Very

eﬀective

Not too

eﬀective

Somewhat

eﬀective

Not at all

eﬀective

21%

16%

Own Organization’s Eﬀectiveness at Helping

Dementia Patients and Families Navigate Health Care

Health Care Workers’ Views on the Eﬀectiveness of Dementia Care Navigation

Special Report - Mapping a Better Future for Dementia Care Navigation

110 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

The Health Care System Could Do More to Help

People Navigate Dementia Care

Health care workers shed light on current deficits in

dementia care. Sixty percent believe that the U.S. health

care system is not effectively helping patients and their

families navigate dementia care (Figure 32). They perceive

their own organization’s efforts more positively, however,

with 4 in 5 saying that their organization is effective

(somewhat effective [61%] or very effective [21%]) at

providing dementia care; Figure 32). Nearly half surveyed

(46%) say their organizations do not have a clearly defined

process for care coordination and clinical pathways for

patients with MCI, Alzheimer’s disease or other dementia.

Health care workers pointed to a lack of community-based

resources for dementia caregivers and current payment

models that do not incentivize care coordination as the

greatest barriers to dementia care navigation (Figure 33).

More than 3 in 4 of the health care workers surveyed (77%)

identified a lack of community-based resources as a barrier,

and 44% viewed it as the greatest barrier. Seven in 10 (70%)

called out restrictions in current reimbursement as a

barrier, with 41% saying this was the greatest barrier.

Interestingly, health care workers did not identify

workforce shortages as a top limitation for dementia care

navigation (Figure 33). There were no differences in

perceived barriers to dementia care navigation between

medical and nonmedical professionals.

Almost 9 in 10 health care workers (87%) feel that

developing alternative payment models is important in

providing future care coordination for people diagnosed

with dementia.

Nonmedical Professionals Are Best Suited to be

Dementia Care Navigators

Survey respondents overwhelmingly agreed that

nonmedical professionals are best suited to provide

navigation services (Figure 34). Within their

organizations, those surveyed reported that social

workers, community health workers, and home health

aides are more often formally involved in care navigation,

and 9 in 10 reported that these individuals are best suited

to offer navigation services. The next group of individuals

health care workers believed are suited for navigation

roles are former caregivers or others who have lived the

caregiving experience, but few reported that these

individuals are formally involved in dementia care

navigation at their organizations. Surprisingly, nearly

2 in 3 health care workers indicated that physicians at

their organization are involved in helping patients and

caregivers navigate health care but fewer than half of the

health care workers surveyed think that physicians are

best suited for this work.

Figure

77%

50%

44%

10%

Lack of community-

based resources for

dementia caregiver

Lack of trained health

care social workers

Current payment

models do not incentivize

care coordination

Lack of trained nurse

practitioners

70%

29%

41%

Seen as a barrier Seen as the biggest barrier

Barriers to Dementia Care Navigation

80%

60%

40%

20%

111

A Path Forward: Revolutionizing Dementia

Care With Person-Centered Navigation

As the complexity of health care for Alzheimer’s and

other dementias continues to challenge individuals living

with dementia and caregivers alike, the Alzheimer’s

Association dementia caregiver and non-physician health

care workforce surveys call attention to the urgent

need for person-centered dementia care navigation and

care delivery solutions for health systems, health care

professionals, caregivers and people living with dementia.

Dementia care management is emerging as an ideal model

to unravel dementia care complexity, improve outcomes

and lower costs (Figure 35).

978

Care navigation is a crucial

component that touches all other aspects of care

management, such as caregiver education and training,

care coordination, medication management, management

of chronic conditions, safety assessments, and advance

care planning.

978

Dementia care navigation, as part of

comprehensive dementia care management, has the

potential to revolutionize care if it is:

• Person-centered to meet the evolving, unique needs of

all individuals living with Alzheimer’s or other dementia.

• Durable yet adaptable to accommodate new treatments,

new diagnostics and other improvements to care.

• Comprehensive to cover medical and nonmedical needs.

• Coordinated to connect disparate care teams and

community resources.

• Feasible regardless of health system structure.

• Cognizant of geographic and socioeconomic barriers.

Ultimately, the goal of care navigation is to improve the

quality of life for people living with dementia, reduce

caregiver stress and enable people living with dementia to

live in their homes and communities as long as possible.

The GUIDE Model is a reason for optimism that

emphasizes streamlined care coordination and robust

support for caregivers — including forging a vital

connection with a dedicated care navigator — and

creating an alternative payment model to reimburse

physicians (see What is GUIDE? on page 94).

986

However, while the GUIDE Model offers one potential

approach toward enhancing dementia care navigation,

it is a limited pilot program that will not be delivered by

all health care providers nor available to all patients with

dementia. Therefore, it is important for health systems,

private insurers and other stakeholders to develop their

own strategies to help people living with dementia and

their caregivers navigate care.

The Special Report survey results brought to light three

themes to advance dementia care navigation efforts:

Formalizing the dementia care navigator role and

increasing navigator proficiency in dementia care.

Scaling and expanding access to dementia care

navigation programs.

Creating direct lines to dementia care navigators.

Special Report - Mapping a Better Future for Dementia Care Navigation

Figure

85%

56%

92%

44%

Social workers,

community health workers,

home health aides

Nurse practitioners,

physician assistants,

registered nurses

Physicians Former caregivers of

others who have lived

the dementia caregiving

experience

61%

18%

40%

46%

Who is formally involved Who is best suited

Professionals Who Help Dementia Patients and Caregivers Navigate Health Care

100%

80%

60%

40%

20%

112 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

Formalize the Dementia Care Navigator Role

Survey responses revealed a noteworthy trend: many

health care workers are undertaking navigator duties

in addition to their usual responsibilities. Ideally, practices

and health systems should transition from ad hoc

navigation support to formalizing dedicated dementia

care navigator roles that are recognized for their vital

and essential contributions to interdisciplinary, person-

centered dementia care.

As mentioned in the Workforce section (see page 64),

several decades of research support the value of

collaborative models that bring different health

professionals together, such as social workers, registered

nurses and non-clinical care managers, physicians and

advanced practice providers, and direct care workers,

including nurse aides, nursing assistants, home health

aides and personal care aides.

754, 755

If these individuals are

the spokes in the dementia care wheel, the care navigator

is the hub — supporting patients and caregivers as they

find their way through the dementia care ecosystem.

Given that this is a relatively new role in the dementia

workforce, it’s crucial for organizations to create a

practice framework to seamlessly integrate dementia

care navigators into existing teams and workflows to

effectively coordinate longitudinal care that spans the

disease course.

Increase Dementia Proficiency to Cultivate

Specialist Navigators

In identifying ideal candidates for navigator roles, medical

and nonmedical professionals agreed that community

health workers, social workers and home health aides are

best suited to be dementia care navigators. Despite

receiving some formal education in navigation, often

The Ideal Future State of Dementia Care

978

as part of college coursework or employer-provided

training, these professionals are typically trained as

generalists. Supplemental training and resources are

necessary to build a solid foundation in both the practical

and emotional aspects of dementia care. Their skills

and compassion for the challenges caregivers and

individuals living with dementia face could be enhanced

with supplemental dementia-specific training and

resources, such as:

• Materials for health care workers from the Health

Resources & Services Administration.

996

• Professional development programs in dementia care

recognized by the Alzheimer’s Association.

997

• The Care Ecosystem Toolkit from the University

of California, San Francisco (UCSF) Memory and

Aging Center.

998

• Home health clinician manuals from the Wisconsin

Alzheimer’s Institute.

999

• Caregiver training videos from UCLA Health.

1000

• Resources, webinars, presentations and toolkits

from the National Alzheimer’s and Dementia

Resource Center.

1001

• Community health worker training for participants

in programs funded by the Administration for

Community Living-Alzheimer’s Disease Program

Initiative (ACL-ADPI).

982

• Resources and webinars on brain health and

dementia from the National Association of

Community Health Centers.

1002

To bolster the training and resources outlined here, the

Alzheimer’s Association is developing a person-centered

navigator training curriculum and certification that is

slated for release in late 2024. This curriculum, which

Patient

Caregiver

Dementia Care

Management

(Including

Navigation)

Specialist

Social Services

Medication

Caregiver Supports

Primary Care Provider

Better

Dementia Care

Improved

Outcomes for

Patients and

Caregivers

Loer

Medicare

Costs

Figure

113

incorporates the Alzheimer’s Association's evidence-

based Dementia Care Practice Recommendations, has the

potential to increase the proficiency of care navigators,

ensuring that they are well-equipped to meet the distinct

needs of individuals living with dementia and their

caregivers. Investment in navigator training and

development could yield a marked improvement in the

overall quality and effectiveness of dementia care.

Incentivize Scalability of Dementia Care Navigation

to Expand Reach

Fee-for-service payment has dominated the health care

market. Under these structures, health care providers are

paid for individual services they perform, such as office

visits or tests.

1003

Experts have long argued that fee-for-

service is inefficient because it encourages the delivery

of more potentially unnecessary care while discouraging

care coordination.

1004

The U.S. health care system is

increasingly transitioning from fee-for-service structures

to alternative payment models, including value-based

payment.

1004

Often called “volume to value,” the goal

of value-based payments is to restructure the approach

“from one that incentivizes volume to one that

rewards value.”

1005

Dementia care is not immune from financial

incentives.

984, 1006, 1007

Health care workers in this year’s

survey believed that current reimbursement systems fail

to incentivize dementia care and are one of the greatest

barriers to dementia care navigation. They strongly

believe that alternative payment models are important in

providing future care coordination for people diagnosed

with dementia.

Work to Make Existing and Future Dementia Care

Navigation Programs Visible and Accessible

According to this year’s caregiver survey, awareness

of dementia care navigators remains low despite the

recognized value of navigation. This may, in part, be due

to variations in terminology used by different health care

providers, inconsistent definitions or that these individuals

simply do not yet exist within organizations. Depending

on the setting, what is defined as dementia care

navigation in this Special Report may also be called

memory care navigation, care navigation, a navigator

program, dementia navigation or not have terminology at

all, but simply be services provided to patients.

990, 992

Future programs must focus on elevating the visibility of

navigation services through targeted outreach efforts.

This involves leveraging community resources, social

media and health care settings to inform and educate

dementia caregivers about the support available to them.

A compendium that defines terms and lists programs by

region could be a useful tool to empower individuals living

with Alzheimer’s or other dementia and their caregivers.

Furthermore, integrating care navigation into primary

care and specialty clinics can ensure that more patients

and families benefit from these services from the onset

of their dementia care journey.

Another key factor limiting access to existing dementia

care navigation programs is their location. Existing

dementia care navigation programs are typically housed

within large health systems or academic medical centers,

putting them out of reach for many individuals from rural

and underrepresented communities who receive care

from hospitals or clinics within their community.

992

anticipation of the growing need for dementia care

navigation programming, the Alzheimer’s Association

created the Dementia Care Navigation Roundtable,

which will help organizations establish best practices,

support implementation and increase access to

navigation programs.

Leverage 24/7 Helplines and Technology to Create

Direct Lines to Care Navigators

Dementia caregivers reported that the most valuable

service that care navigation could offer would be a 24/7

helpline. The Alzheimer’s Association currently offers a

24/7 helpline that performs some navigation activities,

such as assisting individuals with Alzheimer’s or other

dementia and their caregivers with recommendations for

finding qualified care providers, general information

about legal, financial and care decisions, and referrals to

local programs and services.

1008

Ideally, access to 24/7

assistance would be connected directly with an

individual’s interdisciplinary care team. This allows the

care team to manage longitudinal care, proactively assess

any changes needed in care and potentially mitigate

unnecessary emergencies.

While dementia caregivers and health care workers

acting as navigators still prefer traditional communication

methods such as phone calls and in-person visits for

everyday communication, there is an opportunity to

integrate technology solutions to streamline care

coordination and support; these solutions should be

viewed as complementary to existing person-centered

approaches rather than replacements. Several companies

are exploring on-demand virtual and app-based dementia

care navigation, and the GUIDE Model supports

contracting with suppliers to meet care delivery

requirements that participants in the model wouldn’t

otherwise be able to meet on their own.

986

Digital

platforms can offer caregivers and patients easier access

to resources, appointment scheduling and direct

communication with care navigators. However, any

technological solution must be user-friendly and

accessible to all caregivers, regardless of their familiarity

Special Report - Mapping a Better Future for Dementia Care Navigation

114 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

with digital tools, and compatible with any platforms

used by health care providers. Navigators should be

trained on how to communicate effectively through

different channels.

Conclusion

The path forward for person-centered dementia care

navigation is illuminated by the insights and experiences

of dementia caregivers and health care professionals.

The first step on this path is to establish proficient,

dedicated dementia care navigators as a new role in the

interdisciplinary dementia care workforce. Then, by

addressing these key areas — training, person-centered

care, accessibility, collaboration, novel payment models,

and technology — future dementia care navigation

programs can build on the learnings of their predecessors.

Such efforts strive to improve the quality of life for

individuals living with dementia and their caregivers and

pave the way for a more sustainable, efficient and

compassionate health care system.

115

A1. Racial and ethnic identifiers: Facts and Figures keeps the racial

and ethnic terms used in source documents when describing

study findings. When not referring to data from specific studies,

adjectives such as “Black,” “Hispanic” and “White” may be used

(for example, Black populations and Hispanic communities).

A2. Estimated prevalence (number and proportion) of Americans age

65 and older with Alzheimer’s dementia for 2024: The estimated

6.9 million individuals ages 65 years and older with Alzheimer’s

dementia and the estimated numbers of individuals with

Alzheimer’s in each age group were reported from a study that

used data from the Chicago Health and Aging Project (CHAP) in

combination with population projections from the U.S. Census.

241

The number, 6.9 million, is higher than estimated from previous

study that also combined CHAP and U.S. Census data. This is

because the more recent study used updated Census projections

and incorporated information from Hispanic/Latino American

individuals. The proportion of the population with Alzheimer’s

dementia (among people age 65 and older and by age group) is

calculated using as the numerators the numbers of people with

Alzheimer’s dementia, as reported by the recent study in

CHAP.

241

The denominators were the U.S. Census population

projections for the specific age groups of interest.

A3. Differences between CHAP and HRS-HCAP estimates for

Alzheimer’s dementia prevalence: The number of people

estimated to have any form of dementia in the U.S. in 2016 from

the Health and Retirement Study’s (HRS) Harmonized Cognitive

Assessment Protocol (HCAP; 4.92 million) is lower than the

CHAP estimate of how many people were living with Alzheimer’s

dementia only (6.07 million).

160

This is because of differences in

dementia ascertainment between the two studies: both studies

used scores on batteries of cognitive tests, but the HRS-HCAP

study additionally required an informant report of functional

impairment (i.e. disability). Because the more stringent threshold

for dementia in HRS-HCAP may miss people with mild

Alzheimer’s dementia, the Association believes that the larger

CHAP estimates may be a more relevant estimate of the burden

of Alzheimer’s dementia in the United States.

A4. Criteria for identifying people with Alzheimer’s or other

dementias in the Framingham Heart Study: From 1975 to 2009,

7,901 people from the Framingham Study who had survived free

of dementia to at least age 45, and 5,937 who had survived free

of dementia until at least age 65 were followed for incidence of

dementia.

286

Diagnosis of dementia was made according to the

Diagnostic and Statistical Manual of Mental Disorders, 4th

Edition (DSM-IV) criteria and required that the participant

survive for at least 6 months after onset of symptoms. Standard

diagnostic criteria (the NINCDS-ADRDA criteria from 1984)

were used to diagnose Alzheimer’s dementia. The definition of

Alzheimer’s and other dementias used in the Framingham Study

was very strict; if a definition that included milder disease and

disease of less than six months’ duration were used, lifetime risks

of Alzheimer’s and other dementias would be higher than those

estimated by this study.

A5. Projected number of people with Alzheimer’s dementia,

2020-2060: This figure comes from the CHAP study.

241

Other projections are somewhat lower (see, for example,

Brookmeyer et al.

1009

) because they relied on more conservative

methods for counting people who currently have Alzheimer’s

dementia.

Nonetheless, these estimates are statistically

consistent with each other, and all projections suggest

substantial growth in the number of people with Alzheimer’s

dementia over the coming decades.

A6. Annual mortality rate due to Alzheimer’s disease by state:

Unadjusted death rates are presented rather than age-adjusted

death rates in order to provide a clearer depiction of the burden

of mortality for each state. States such as Florida with larger

populations of older people will have a larger burden of mortality

due to Alzheimer’s — a burden that appears smaller relative to

other states when the rates are adjusted for age.

A7. Number of family and other unpaid caregivers of people with

Alzheimer’s or other dementias: To calculate this number, the

Alzheimer’s Association started with data from the Behavioral

Risk Factor Surveillance System (BRFSS) survey. Since 2016, all

states and the District of Columbia utilized the BRFSS caregiver

module. This module identified respondents age 18 and over

who had provided any regular care or assistance during the past

month to a family member or friend who had a health problem,

long-term illness or disability. The module asks a series of

follow-up questions, including asking the caregiver to identify

what the main health problem, long-term illness, or disability that

the person they care for has. One of the reported condition

categories is “Alzheimer’s disease, dementia, or other cognitive

impairment.” In the BRFSS surveys conducted in 2019 and after,

an additional follow-up question was included, asking if the

caregiving recipient also had dementia in addition to their main

condition. Prior to 2019, the survey did not include caregivers of

recipients for whom dementia was not their main condition, so

these numbers were imputed using data collected in 2019 by the

National Alliance for Caregiving (NAC)/AARP survey. The NAC/

AARP survey asked respondents age 18 and over whether they

were providing unpaid care for a relative or friend age 18 or

older or had provided such care during the past 12 months.

Respondents who answered affirmatively were then asked about

the health problems of the person for whom they provided care:

11% of respondents reported dementia as the main condition of

their care recipient, while 26% of all respondents reported the

presence of dementia. Using this ratio in combination with

BRFSS data, the Alzheimer’s Association was able to determine

the percentage of adults in all states and the District of Columbia

who are caregivers for individuals living with Alzheimer’s or

another dementia. These percentages were applied to the

estimated number of people age 18 and older in each state

in July 2023, using U.S. Census Bureau data available at:

https://www.census. gov/programs-surveys/popest/data/tables.

html. This resulted in a total of 11.457 million Alzheimer’s

and dementia caregivers across all 50 states and the District

of Columbia.

A8. Number of hours of unpaid care: The BRFSS survey asks

caregivers to identify, within five time frames, the number of

hours they provide care in an average week. Using the method

developed by Rabarison and colleagues,

441

the Alzheimer’s

Association assumed the midpoint of each time frame was the

average number of hours for each caregiver within that time

frame and then calculated the overall average number of hours

of weekly care provided by dementia caregivers in each state.

This number was then converted to a yearly average and

multiplied by the number of caregivers in each state

determine the total number of hours of care provided. When

added together, across all 50 states and the District of Columbia,

the total number of hours provided by Alzheimer’s and dementia

caregivers is 18.376 billion hours.

A9. Value of unpaid caregiving: For each state, the hourly value of

care was determined as the average of the state minimum hourly

wage

1010

and the most recently available state median hourly cost

of a home health aide. (For Nevada, the minimum wage used was

the average of the minimum wage for those who are not

provided health insurance and the minimum wage for those who

are provided health insurance.)

908

The average for each state was

then multiplied by the total number of hours of unpaid care in

that state

to derive the total value of unpaid care. Adding the

totals from all states and the District of Columbia resulted in an

economic value of $346.585 billion for dementia caregiving in

the United States in 2023.

Appendices

End Notes

Appendices

116 Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2024;20(5).

A10. The 2014 Alzheimer’s Association Women and Alzheimer’s Poll:

This poll questioned a nationally representative sample of

3,102 American adults about their attitudes, knowledge and

experiences related to Alzheimer’s and dementia from Jan. 9,

2014, to Jan. 29, 2014. An additional 512 respondents who

provided unpaid help to a relative or friend with Alzheimer’s or

a related dementia were asked questions about their care

provision. Random selections of telephone numbers from

landline and cell phone exchanges throughout the United States

were conducted. One individual per household was selected

from the landline sample, and cell phone respondents were

selected if they were 18 years old or older. Interviews were

administered in English and Spanish. The poll “oversampled”

Hispanics/Latinos, selected from U.S. Census tracts with higher

than an 8% concentration of this group. A list sample of Asian

Americans was also utilized to oversample this group. A general

population weight was used to adjust for number of adults in the

household and telephone usage; the second stage of this weight

balanced the sample to estimated U.S. population characteristics.

A weight for the caregiver sample accounted for the increased

likelihood of female and White respondents in the caregiver

sample. Sampling weights were also created to account for the

use of two supplemental list samples. The resulting interviews

comprise a probability-based, nationally representative sample

of U.S. adults. A caregiver was defined as an adult over age 18

who, in the past 12 months, provided unpaid care to a relative or

friend age 50 or older with Alzheimer’s or another dementia.

Questionnaire design and interviewing were conducted by Abt

SRBI of New York.

A11. Lewin Model on Alzheimer’s and dementia costs: These numbers

come from a model created for the Alzheimer’s Association by

the Lewin Group. The model estimates total payments for health

care, long-term care and hospice — as well as state-by-state

Medicaid spending — for people with Alzheimer’s and other

dementias. The model was updated by the Lewin Group in

January 2015 (updating previous model) and June 2015

(addition of state-by-state Medicaid estimates). Detailed

information on the model, its long-term projections and its

methodology are available at: alz.org/trajectory. For the

purposes of the data presented in this report, the following

parameters of the model were changed relative to the

methodology outlined at alz.org/trajectory: (1) cost data from

the 2018 Medicare Current Beneficiary Survey (MCBS) were

used rather than data from the 2008 MCBS; (2) prevalence

among older adults was assumed to equal the prevalence levels

from Rajan and colleagues

241

and included in this report

(6.9 million in 2024), rather than the prevalence estimates

derived by the model itself; (3) estimates of inflation and excess

cost growth reflect the most recent relevant estimates from the

cited sources (Centers for Medicare & Medicaid Services [CMS]

actuaries and the Congressional Budget Office); and (4) 2014

state-by-state data from CMS on the number of nursing home

residents and percentage with moderate and severe cognitive

impairment were used in lieu of 2012 data. The Lewin Model's

state-specific Medicaid costs for 2020 and 2025 are based on an

earlier estimate of state prevalence than reported here (Weuve

J, Hebert LE, Scherr PA, Evans DA. Prevalence of Alzheimer

disease in U.S. states. Epidemiology 2015;26(1):E4-6).

A12. All cost estimates were inflated to year 2023 dollars using the

Consumer Price Index (CPI): All cost estimates were inflated

using the seasonally adjusted average prices for medical care

services from all urban consumers. The relevant item within

medical care services was used for each cost element. For

example, the medical care item within the CPI was used to inflate

total health care payments; the hospital services item within the

CPI was used to inflate hospital payments; and the nursing home

and adult day services item within the CPI was used to inflate

nursing home payments.

A13. Average annual per-person payments for health care and

long-term care services for Medicare beneficiaries age 65 and

older with and without Alzheimer’s or other dementias:

Payments are unadjusted, and therefore, do not account for

differences in patient characteristics, such as age or sex.

Additionally, payments are based on health care utilization and

payments in 2018, prior to the COVID-19 pandemic, and do not

reflect any pandemic-related changes in utilization.

A14. Enrollment in fee-for-service Medicare versus Medicare Part C:

Individuals eligible for Medicare can enroll in traditional

Medicare, also referred to as fee-for-service Medicare and

original Medicare, or Medicare Advantage, also referred to as

Medicare Part C.

1011

With traditional Medicare, beneficiaries can

receive care from any doctor or hospital that accepts Medicare

in the United States. Generally, beneficiaries can seek care from

a specialist without a referral. Traditional Medicare has fixed cost

sharing, which includes coinsurance of 20% of the Medicare-

approved amount for services covered by Part B after the

deductible is met. Individuals enrolled in traditional Medicare can

also enroll in Medicare Supplemental Insurance (also referred to

as Medigap) to help cover the out-of-pocket costs. Traditional

Medicare does not have an annual limit on the amount

beneficiaries pay out-of-pocket. Benefits are the same for all

individuals enrolled in traditional Medicare. Individuals enrolled in

traditional Medicare can also enroll in a Medicare Part D plan to

cover some of the costs of prescription drugs. Medicare Part D

enrollment has a separate premium. With Medicare Advantage,

individuals must enroll in a specific private plan. Premiums,

benefits and out-of-pocket costs may vary across plans.

Medicare Advantage plans have an annual limit on the amount

individuals pay out-of-pocket. Individuals enrolled in a Medicare

Advantage plan are not allowed to enroll in Medigap. Medicare

Advantage plans are also allowed to offer additional benefits not

included in traditional Medicare, such as vision, hearing and

dental services as well as some non-health care benefits, such as

transportation costs and gym memberships. Many Medicare

Advantage plans include prescription drug coverage (Medicare

Part D). Individuals enrolled in a Medicare Advantage plan have a

specific network of doctors and hospitals that enrollees need to

use for services to be paid by the Medicare Advantage plan.

Additionally, individuals enrolled in a Medicare Advantage plan

may need a referral to see a specialist. Enrollment in Medicare

Advantage has increased dramatically over the past decade, with

51% of all Medicare beneficiaries enrolled in a Medicare

Advantage plan in 2023 compared to 29% in 2013.

918

A15. Medicare Current Beneficiary Survey Report: These data come

from an analysis of findings from the 2018 Medicare Current

Beneficiary Survey (MCBS). The analysis was conducted for the

Alzheimer’s Association by Health Care Cost Institute.

863

The

MCBS, a continuous survey of a nationally representative sample

of about 15,000 Medicare beneficiaries, is linked to Medicare

claims. The survey is supported by the U.S. Centers for Medicare

& Medicaid Services (CMS). For community-dwelling survey

participants, MCBS interviews are conducted in person three

times a year with the Medicare beneficiary or a proxy

respondent if the beneficiary is not able to respond. For survey

participants who are living in a nursing home or another

residential care setting, such as an assisted living residence,

retirement home or a long-term care unit in a hospital or mental

health facility, MCBS interviews are conducted with a staff

member designated by the facility administrator as the most

appropriate to answer the questions. Data from the MCBS

analysis that are included in 2024 Alzheimer’s Disease Facts and

Figures pertain only to Medicare beneficiaries age 65 and older.

117

Appendices

For this MCBS analysis, people with dementia are defined as:

A16. Differences in estimated costs reported by Hurd and colleagues:

Hurd and colleagues

862

estimated per-person costs using data

from participants in ADAMS, a cohort in which all individuals

underwent diagnostic assessments for dementia. One reason

that the per-person costs estimated by Hurd and colleagues are

lower than those reported in Facts and Figures is that ADAMS,

with its diagnostic evaluations of everyone in the study, is more

likely than MCBS to have identified individuals with less severe

or undiagnosed Alzheimer’s. By contrast, the individuals with

Alzheimer’s registered by MCBS are likely to be those with more

severe, and therefore more costly, illness. A second reason is that

the Hurd et al. estimated costs reflect an effort to isolate the

incremental costs associated with Alzheimer’s and other

dementias (those costs attributed only to dementia), while the

per-person costs in 2024 Alzheimer’s Disease Facts and Figures

incorporate all costs of caring for people with the disease

(regardless of whether the expenditure was related to dementia

or a coexisting condition).

A17. For the health care workforce survey, medical and nonmedical

respondents were required to meet the following

screening criteria:

• Community-dwelling survey participants who answered yes

to the MCBS question, “Has a doctor ever told you that you had

Alzheimer’s disease or dementia?” Proxy responses to this

question were accepted.

• Survey participants who were living in a nursing home or other

residential care setting and had a diagnosis of Alzheimer’s

disease or dementia in their medical record

• Survey participants who had at least one Medicare claim with a

diagnostic code for Alzheimer’s or other dementias in 2008.

The claim could be for any Medicare service, including hospital,

skilled nursing facility, outpatient medical care, home health

care,hospice or physician, or other health care provider visit.

The diagnostic codes used to identify survey participants with

Alzheimer’s or other dementias are 331.0, 331.1, 331.11,

331.19, 331.2, 331.7, 331.82, 290.0, 290.1, 290.10, 290.11,

290.12, 290.13, 290.20, 290.21, 290.3, 290.40, 290.41,

290.42, 290.43, 291.2, 294.0, 294.1, 294.10 and 294.11.

Costs from the MCBS analysis are based on responses from

2018 and reported in 2023 dollars.

• Spend at least 20% of professional time interacting

directly with patients or caregivers.

• Report at least 10% of their patients being age 60 or older.

• Spend at least 10% of professional time performing

navigation-type services.

• Report at least 10% of patients for whom they perform

these services having Alzheimer’s disease, other dementia

or mild cognitive impairment (MCI).

Dementia care navigation was defined as the following for

this group:

Whether or not you consider yourself a care navigator, do you

provide any of these types of care, support or services in your

current role?

• Patient education around diagnosis, treatment options

and resources.

• Patient referrals to clinical specialists.

• Patient referrals to clinical trials.

• Patient referrals to social workers.

• Patient referrals to community-based services.

• Patient scheduling (labs, care team appointments, etc.)

• Patient assistance with insurance.

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The Alzheimer’s Association acknowledges the

contributions of Joseph Gaugler, Ph.D., Bryan

James, Ph.D., Tricia Johnson, Ph.D., Jessica Reimer,

Ph.D., Kezia Scales, Ph.D., Sarah Tom, Ph.D., M.P.H.,

Jennifer Weuve, M.P.H., Sc.D., and Jarmin Yeh,

Ph.D., M.P.H., M.S.S.W., in the preparation of

2024 Alzheimer’s Disease Facts and Figures.

Alzheimer’s Association

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