2009 Alzheimer's disease facts and figures

Article Outline

• Abstract
• 1. About this report
• 2. Overview of AD
  • 2.1. Dementia: definition and specific types
  • 2.2. More about AD
  • 2.3. Symptoms of AD
  • 2.4. Risk factors for AD
  • 2.5. Treatment and prevention of AD
• 3. Prevalence
  • 3.1. Prevalence of AD and other dementias
  • 3.2. Prevalence of AD and other dementias in women and men
  • 3.3. Prevalence of AD and other dementias according to years of education
  • 3.4. Prevalence of AD and other dementias in African-Americans and whites
  • 3.5. Lifetime risk estimates for AD and other dementias
  • 3.6. Estimates of numbers of people with AD, by state
  • 3.7. Causes of dementia
  • 3.8. Looking to the future
• 4. Mortality
  • 4.1. Deaths from AD
  • 4.2. State-by-state deaths from AD
  • 4.3. Death rates by age, gender, and ethnicity
  • 4.4. Location of death
• 5. Caregiving
  • 5.1. Paid caregivers
  • 5.2. Family caregiving
    • 5.2.1. Number of caregivers
    • 5.2.2. Hours of unpaid care
    • 5.2.3. Economic value of caregiving
    • 5.2.4. Who are the caregivers?
    • 5.2.5. Long-distance caregivers
    • 5.2.6. Caregiving tasks
    • 5.2.7. Duration of caregiving
    • 5.2.8. Impact of caregiving on the caregiver
      • 5.2.8.1. Impact on a caregiver's emotional well-being
      • 5.2.8.2. Impact on a caregiver's health
      • 5.2.8.3. Impact on a caregiver's employment
      • 5.2.8.4. Impact on a caregiver's income and financial security
    • 5.2.9. Emerging trends and issues from new data
• 6. Use and costs of healthcare, long-term care, and hospice care
  • 6.1. Use and costs of healthcare services
    • 6.1.1. Use of healthcare services by setting
    • 6.1.2. Impact of coexisting medical conditions
    • 6.1.3. Costs of healthcare services by setting
    • 6.1.4. Costs of coexisting medical conditions
  • 6.2. Use and costs of long-term care services
    • 6.2.1. Use of long-term care services by setting
    • 6.2.2. Costs of long-term care services by setting
    • 6.2.3. Affordability of long-term care services
    • 6.2.4. Long-term care insurance
    • 6.2.5. Medicaid costs
    • 6.2.6. Out-of-pocket costs for healthcare and long-term care services
  • 6.3. Use and costs of hospice care
    • 6.3.1. Use of hospice services
    • 6.3.2. Costs of hospice services
• 7. Special report: MCI and early-stage AD
  • 7.1. Assessing memory loss
  • 7.2. Frequency
  • 7.3. Outcomes
  • 7.4. Predictors of progression from MCI to dementia
  • 7.5. Treatment
  • 7.6. The future
• Appendix:. End notes
• References
• Copyright

Abstract 

Alzheimer's disease (AD) is the sixth leading cause of all deaths in the United States, and the fifth leading cause of death in Americans aged 65 and older. Whereas other major causes of death have been on the decrease, deaths attributable to AD have been rising dramatically. Between 2000 and 2006, heart-disease deaths decreased nearly 12%, stroke deaths decreased 18%, and prostate cancer-related deaths decreased 14%, whereas deaths attributable to AD increased 47%. An estimated 5.3 million Americans have AD; the approximately 200,000 persons under age 65 years with AD comprise the younger-onset AD population. Every 70 seconds, someone in America develops AD; by 2050, this time is expected to decrease to every 33 seconds. Over the coming decades, the “baby-boom” population is projected to add 10 million people to these numbers. In 2050, the incidence of AD is expected to approach nearly a million people per year, with a total estimated prevalence of 11 to 16 million people. Significant cost implications related to AD and other dementias include an estimated $148 billion annually in direct (Medicare/Medicaid) and indirect (e.g., decreased business productivity) costs. Not included in these figures is the $94 billion in unpaid services to individuals with AD provided annually by an estimated 10 million caregivers. Mild cognitive impairment (MCI) is an important component in the continuum from healthy cognition to dementia. Understanding which individuals with MCI are at highest risk for eventually developing AD is key to our ultimate goal of preventing AD. This report provides information meant to increase an understanding of the public-health impact of AD, including incidence and prevalence, mortality, lifetime risks, costs, and impact on family caregivers. This report also sets the stage for a better understanding of the relationship between MCI and AD.

Keywords: Alzheimer's disease, Dementia, Incidence, Prevalence, Mortality, Lifetime risks, Mild cognitive impairment, Caregivers, Healthcare costs, Direct costs, Indirect costs

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1. About this report 

The 2009 Alzheimer's Disease Facts and Figures provides a statistical resource containing U.S. data related to Alzheimer's disease (AD), the most common type of dementia, as well as other dementias. The background and context for interpretation of the data are contained in the Overview. This includes definitions of the types of dementias and a summary of current knowledge about AD. Additional sections address the prevalence, mortality, and lifetime risk of AD and other dementias, as well as paid and family caregiving, and the use and costs of care and services. The special report for 2009 focuses on the emerging issue of mild cognitive impairment (MCI).

Specific information in this year's Alzheimer's Disease Facts and Figures includes:

The Appendix details the sources and methods used to derive data presented here. Definitions of terms and extensive References are also provided.

This report frequently cites statistics that apply to individuals with all types of dementia. When possible, specific information about AD is provided. In other cases, the reference may be a more general one to “AD and other dementias.”

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2. Overview of AD 

Alzheimer's disease is the most common cause of dementia. Here we provide information about the definition of dementia, the characteristics of specific types of dementia, and the symptoms of, risk factors for, and treatment of AD. More detailed information on these topics is available at www.alz.org.

2.1. Dementia: definition and specific types 

Dementia is characterized by a loss of or decline in memory and other cognitive abilities. It is caused by various diseases and conditions that result in damaged brain cells. To be classified as dementia, the following criteria must be met:

Different types of dementia are associated with distinct symptom patterns and distinguishing microscopic brain abnormalities. Increasing evidence from long-term epidemiological observations and autopsy studies suggests that many people have microscopic brain abnormalities associated with more than one type of dementia. The symptoms of different types of dementia also overlap, and can be further complicated by coexisting medical conditions. Table 1 provides information about the most common types of dementia.

Table 1. Common types of dementia and their typical characteristics

Mild cognitive impairment (MCI) is a condition in which a person has problems with memory, language, or another essential cognitive function that are severe enough to be noticeable to others and show up on tests, but not severe enough to interfere with daily life. Some people with MCI go on to develop dementia. For others, the symptoms of MCI do not progress to dementia, and some people who have MCI at one point in time later revert to normal cognitive status. To learn more about the potential role of MCI as a transitional state to early AD, see Special Report: Mild Cognitive Impairment and Early-Stage AD.

2.2. More about AD 

In AD, as in other types of dementia, increasing numbers of nerve cells deteriorate and die. A healthy adult brain has 100 billion nerve cells, or neurons, with long branching extensions connected at 100 trillion points. At these connections, called synapses, information flows in tiny chemical pulses, released by one neuron and taken up by the receiving cell. Different strengths and patterns of signals move constantly through the brain's circuits, creating the cellular basis of memories, thoughts, and skills.

In AD, the information transfer at the synapses begins to fail, the number of synapses declines, and eventually cells die. Brains with advanced AD show dramatic shrinkage from cell loss and widespread debris from dead and dying neurons.

2.3. Symptoms of AD 

Alzheimer's disease can affect different people in different ways, but the most common symptom pattern begins with gradually worsening difficulty in remembering new information. This is because disruption of brain cells usually begins in regions involved in forming new memories. As damage spreads, individuals also experience confusion, disorganized thinking, impaired judgment, trouble expressing themselves, and disorientation with regard to time, space, and location, which may lead to unsafe wandering and socially inappropriate behavior. In advanced AD, people need help bathing, dressing, using the bathroom, eating, and carrying out other daily activities. Those in the final stages of the disease lose their ability to communicate, fail to recognize loved ones, and become bedbound and reliant on continual care. Alzheimer's disease is ultimately fatal.

Although families generally prefer to keep a person with AD at home as long as possible, most people with the disease eventually need more assistance than families can provide, and they move into a nursing home or other residence where professional care is available.

2.4. Risk factors for AD 

Although the cause or causes of AD are not yet known, most experts agree that AD, like other common chronic conditions, probably develops as a result of multiple factors rather than a single cause.

The greatest risk factor for AD is advancing age. Most Americans with AD are aged 65 years or older, although individuals younger than age 65 years can also develop the disease.

When AD or other dementia is recognized in a person under age 65 years, these conditions are referred to as “younger-onset” or “early-onset” AD, or “younger-onset” or “early-onset” dementia.

A small percentage of AD cases (probably less than 5%) is caused by rare genetic variations found in a small number of families worldwide. In these inherited forms of AD, the disease tends to develop before age 65 years, and sometimes in individuals as young as 30 years.

A genetic factor in late-onset AD (AD developing at age 65 years or older) is apolipoprotein E ɛ4 (APOE ɛ4). APOE ɛ4 is one of three common forms of the APOE gene, which provides the blueprint for a protein that carries cholesterol in the bloodstream. Everyone inherits one form of the APOE gene from each of his or her parents. Those who inherit one APOE ɛ4 gene run an increased risk of developing AD. Those who inherit two APOE ɛ4 genes have an even higher risk. However, inheriting one or two copies of the gene does not guarantee that the individual will develop AD.

2.5. Treatment and prevention of AD 

No treatment is available to slow or stop the deterioration of brain cells in AD. The U.S. Food and Drug Administration has approved five drugs that temporarily slow the worsening of symptoms for about 6 to 12 months, on average, for about half of the individuals who take them. Based on deepening insights into the underlying biology of AD and emerging conceptual frameworks for understanding the disease, researchers have identified treatment strategies that may have the potential to change the course of AD. A number of experimental therapies are undergoing clinical tests in human volunteers.

Despite the present lack of disease-modifying therapies, studies consistently show that the active medical management of AD and other dementias can significantly improve quality of life through all stages of the disease for diagnosed individuals and their caregivers. Active management includes the appropriate use of available treatment options, an effective integration of coexisting conditions into the treatment plan, and the use of supportive services such as counseling, activity, and support groups and adult day-center programs.

Many scientists consider the emerging field of prevention one of the most exciting recent developments in dementia research. A growing body of evidence suggests that the health of the brain (one of the body's most highly vascular organs) is closely linked to the overall health of the heart and blood vessels. Some data indicate that management of cardiovascular risk factors, such as high cholesterol, type 2 diabetes, high blood pressure, and overweight, may help avoid or delay cognitive decline. Additional evidence points to a significant role for regular physical exercise in maintaining lifelong cognitive health. More limited data suggest that a low-fat diet, rich in fruits and vegetables, may support brain health, as may a robust social network and a lifetime of intellectual curiosity and mental stimulation.

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3. Prevalence 

Millions of Americans have AD or other dementias. More women than men have AD and other dementias, primarily because women live longer, on average, than men, and their longer life expectancy increases the time in which to develop AD or other dementia. The prevalence of AD and other dementias also differs by education: those with fewer years of education appear to have higher rates of AD and other dementias. Some researchers believe that more years of education (compared with fewer years) provide a “cognitive reserve” that allows individuals to compensate for symptoms of AD or other dementias. It is also believed that these differences reflect socioeconomic factors such as higher rates of disease and less access to medical care in lower socioeconomic groups. Racial and ethnic differences in the rates of AD and other dementias were also reported, although differences were not consistently found.

The number of Americans with AD and other dementias is increasing every year because of the steady growth of the older population. This number will continue to escalate rapidly in the coming years as the “baby-boom” generation ages.

Figures from different studies on the prevalence and characteristics of people with AD and other dementias vary, depending on how each study was conducted. Data from several studies are used here to describe the prevalence of these conditions and the proportion of people with these conditions in terms of gender, years of education, race, and cause of dementia. Data sources and methodologies are described, and more detailed information is contained in the End Notes section of the Appendix. Estimates of the lifetime risk of AD and other dementias are also briefly discussed.

3.1. Prevalence of AD and other dementias 

An estimated 5.3 million Americans of all ages have AD. This figure includes 5.1 million people aged 65 years and older,^A1 and 200,000 individuals under age 65 years with younger-onset AD [1]. Based on these estimates, approximately 500,000 Americans under age 65 years have AD or other dementias. Of these, about 40% are estimated to have AD:

3.2. Prevalence of AD and other dementias in women and men 

Women are more likely than men to have AD and other dementias. Based on estimates from the Aging, Demographics, and Memory Study (ADAMS), 14% of all people aged 71 years and older have dementia [2].^A4 As shown in Fig. 1, women aged 71 and older had higher rates than men: 16% for women, and 11% for men. The 2008 estimate is that 2.4 million women and 1 million men aged 71 years and older have dementia.

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• Fig. 1. 

  Estimated percentage of Americans aged 71+ with dementia by gender, ADAMS, 2002.

Further analysis of these data indicates that the larger proportion of older women than men with dementia is primarily because women live longer, on average, than men [2]. Likewise, many studies of the age-specific incidence (new cases) of dementia found no significant difference by gender [3], [4], [5], [6], [7].

The same is true for AD. The larger proportion of older women than men with AD is believed to be explained by women's longer lives [2]. Again, many studies of the age-specific incidence of AD showed no significant difference for women and men [3], [6], [7], [8], [9], [10], [11]. Thus, gender appears not to be a risk factor for AD or other dementias after age is taken into account. Women in particular are more likely to have AD and other dementias because they live long enough to develop these conditions, and generally live longer than men.

3.3. Prevalence of AD and other dementias according to years of education 

People with fewer years of education appear to be at higher risk for AD and other dementias than those with more years of education. Studies of the prevalence of dementia show that fewer years of education are associated with a greater likelihood of having dementia [2], [12], and incidence studies show that fewer years of education are associated with a greater risk of developing dementia [5], [6], [13]. One study found, for example, that people with less than 12 years of education had a 15% greater risk of developing dementia than people with 12 to 15 years of education, and a 35% greater risk of developing dementia than people with more than 15 years of education [6].

Similar findings were reported for AD. Studies of the prevalence of AD show that fewer years of education are associated with a higher likelihood of AD [2], [12], and incidence studies show that fewer years of education are associated with a greater risk of developing AD [6], [9], [13], [14].

A number of researchers noted that years of education may be a surrogate marker for factors that affect access to education, such as socioeconomic status and place of residence as a child [14], [15]. Fewer years of education are generally related to additional factors that are associated with the development of dementia, such as lower levels of occupational attainment and a higher prevalence of physical health conditions in adulthood.

3.4. Prevalence of AD and other dementias in African-Americans and whites 

African-Americans are frequently reported to be more likely than whites to have AD and other dementias. However, a more detailed analysis of these relationships indicates that the differences may be largely explained by factors other than race. Most analyses that examined racial differences in AD and other dementias, and that simultaneously looked at age, gender, years of education, and comorbid conditions, concluded that significant differences on the basis of race do not persist [2], [4], [5], [6], [12], [16].

Researchers who examined racial differences in risk factors for AD alone reported similar findings. Most analyses that combined age, gender, years of education, African-American versus white race, and APOE status found that the higher prevalence of AD in African-Americans is primarily explained by these other factors, or that their increased risk is greatly reduced after these factors are taken into account [2], [4], [5], [6], [9], [12].

3.5. Lifetime risk estimates for AD and other dementias 

The original Framingham Study population was used to estimate short-term (10-year), intermediate (20-year and 30-year), and lifetime risks for AD, as well as overall risk for any dementia [17].^A5 Nearly 2800 persons aged 65 years and free of dementia were identified in 1975, and provided the basis for an incidence study of dementia as well as AD. This group (or cohort) was followed for up to 29 years. Key findings included a significantly higher lifetime risk for both dementia and AD in women compared with men. More than 20% of women at age 65 years would ultimately develop dementia (estimated lifetime risk), compared with approximately 17% of men. For AD, the estimated lifetime risk was nearly 1 in 5 for women, compared to 1 in 10 for men. Unpublished data from the Framingham Study indicated that at age 55 years, the estimated lifetime risk for AD was 17% in women (approximately 1 in 6 women), compared with 9% in men (nearly one in 10 men). The unpublished data for any dementia in women at age 55 years was 21%, and for men, 14% [18].

Increases in short-term and intermediate risks for dementia and AD were evident not only at age 65 years, but were markedly increased at ages 75 and 85 years for both women and men. However, compared with women, the risks were not as high in men. Fig. 2, Fig. 3, Fig. 4, Fig. 5 present 10-year risks for men and women for dementia and AD, and estimated lifetime risks for these disorders. Again, these differences in lifetime risks for women compared with men are largely attributable to the longer life expectancy for women.

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• Fig. 2. 

  Framingham estimated risks for dementia (all types) by age and sex.

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• Fig. 3. 

  Framingham estimated risks for AD by age and sex.

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• Fig. 4. 

  Framingham estimated lifetime risks for dementia (all types) by age and sex.

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• Fig. 5. 

  Framingham estimated lifetime risks for AD by age and sex.

For women at age 65 years, the short-term risk for developing dementia over the next 10 years is approximately 1%. However, for women at age 75 years, the risk of developing dementia over the next 10 years jumps more than sevenfold, and at 85 years, the risk skyrockets to 20-fold. Similar dramatic increases were seen for AD. The risk scenario for men follows a similar trajectory.

The Framingham Study lifetime risk estimate for women is above 20% for dementia, and clearly higher in women than in men. Although the concept of lifetime risk generally reflects the risk from birth to death, dementia is a condition that usually occurs after age 65 years. Although there is an important minority of people with younger-onset AD, the dementia risk before age 65 years is relatively modest. Estimating the risk in people who reach age 65 years dementia-free provides a reasonable estimate of lifetime risk in the bulk of the population at risk for dementia.

The definition of AD and other dementias in the Framingham Study required the documentation of moderate to severe disease, and of symptoms lasting a minimum of 6 months. As a result of these requirements, the Framingham Study estimates are considered conservative. Thus, when one considers the numbers of people with mild to moderate levels of dementia, as well as those with dementia of less than 6 months' duration, the present and future numbers of people at risk for AD and other dementias far exceed those stated in the Framingham Study.

3.6. Estimates of numbers of people with AD, by state 

As described in Table 2, the projected number of people aged 65 years and older with AD varies by region of the country, as well as by state [19]. Table 2 presents the estimated numbers of people with AD by age groups of 65 years and older. The projections are presented by region and state for the years 2000, 2010, 2020, and 2025. The percent change in AD between 2000 and each subsequent time period is also shown. Comparable projections for prevalence data on dementia according to state are not available.

Table 2. Projections by region and state for total numbers of Americans aged 65 and older with AD^∗

		Projected numbers (in 1,000s) with AD by age group
	Year	65–74	75–84	85+	Total	Percentage change in AD (compared with 2000)
Northeast∗
Connecticut	2000	3.6	35.0	30.0	68.0
	2010	2.8	30.0	37.0	70.0	3
	2020	3.6	29.0	38.0	70.0	3
	2025	3.9	34.0	38.0	76.0	12
Maine	2000	1.6	13.0	10.0	25.0
	2010	1.2	12.0	12.0	25.0	0
	2020	1.7	12.0	12.0	25.0	0
	2025	2.0	14.0	12.0	28.0	12
Massachusetts	2000	6.6	61.0	52.0	120.0
	2010	5.1	54.0	64.0	120.0	0
	2020	6.8	51.0	66.0	120.0	0
	2025	7.5	61.0	67.0	140.0	17
New Hampshire	2000	1.2	9.8	8.0	19.0
	2010	1.0	9.9	11.0	22.0	16
	2020	1.4	10.0	12.0	23.0	21
	2025	1.7	13.0	12.0	26.0	37
New Jersey	2000	9.1	80.0	63.0	150.0
	2010	7.5	73.0	74.0	150.0	0
	2020	9.4	71.0	77.0	160.0	7
	2025	10.0	83.0	79.0	170.0	13
New York	2000	20.0	170.0	140.0	330.0
	2010	16.0	150.0	150.0	320.0	−3
	2020	20.0	150.0	160.0	330.0	0
	2025	21.0	170.0	160.0	350.0	6
Pennsylvania	2000	17.0	150.0	110.0	280.0
	2010	12.0	130.0	140.0	280.0	0
	2020	15.0	120.0	130.0	260.0	−7
	2025	17.0	140.0	130.0	280.0	0
Rhode Island	2000	1.3	12.0	10.0	24.0
	2010	0.9	10.0	13.0	24.0	0
	2020	1.2	9.1	12.0	23.0	−4
	2025	1.4	11.0	12.0	24.0	0
Vermont	2000	0.6	5.2	4.4	10.0
	2010	0.5	5.1	5.3	11.0	10
	2020	0.8	5.2	5.5	12.0	20
	2025	0.9	6.5	5.6	13.0	30
Midwest∗
Illinois	2000	12.0	110.0	89.0	210.0
	2010	10.0	98.0	100.0	210.0	0
	2020	13.0	97.0	110.0	220.0	5
	2025	14.0	110.0	110.0	240.0	14
Indiana	2000	6.6	54.0	42.0	100.0
	2010	5.9	55.0	54.0	120.0	20
	2020	7.0	56.0	58.0	120.0	20
	2025	8.4	65.0	60.0	130.0	30
Iowa	2000	3.3	32.0	30.0	65.0
	2010	3.0	30.0	36.0	69.0	6
	2020	3.6	30.0	38.0	71.0	9
	2025	4.2	34.0	39.0	77.0	18
Kansas	2000	2.6	25.0	23.0	50.0
	2010	2.3	24.0	26.0	53.0	6
	2020	3.2	25.0	28.0	56.0	12
	2025	3.7	30.0	29.0	62.0	24
Michigan	2000	11.0	89.0	67.0	170.0
	2010	8.3	82.0	85.0	180.0	6
	2020	10.0	77.0	86.0	170.0	0
	2025	12.0	90.0	87.0	190.0	12
Minnesota	2000	4.5	43.0	40.0	88.0
	2010	4.0	41.0	50.0	94.0	7
	2020	5.4	43.0	53.0	100.0	14
	2025	6.4	51.0	56.0	110.0	25
Missouri	2000	6.5	55.0	48.0	110.0
	2010	5.6	53.0	55.0	110.0	0
	2020	7.2	53.0	57.0	120.0	9
	2025	8.3	63.0	58.0	130.0	18
Nebraska	2000	1.7	16.0	15.0	33.0
	2010	1.6	16.0	19.0	37.0	12
	2020	2.1	17.0	21.0	39.0	18
	2025	2.4	20.0	21.0	44.0	33
North Dakota	2000	0.8	7.5	7.3	16.0
	2010	0.7	7.7	9.8	18.0	13
	2020	0.8	7.3	11.0	19.0	19
	2025	1.0	8.4	11.0	20.0	25
Ohio	2000	13.0	110.0	82.0	200.0
	2010	11.0	110.0	110.0	230.0	15
	2020	13.0	100.0	120.0	230.0	15
	2025	15.0	120.0	120.0	250.0	25
South Dakota	2000	0.9	8.1	7.7	17.0
	2010	0.8	8.0	9.7	19.0	12
	2020	1.0	7.8	10.0	19.0	12
	2025	1.2	9.2	11.0	21.0	24
Wisconsin	2000	5.7	51.0	45.0	100.0
	2010	4.9	49.0	55.0	110.0	10
	2020	6.4	49.0	58.0	110.0	10
	2025	7.5	58.0	60.0	130.0	30
South∗
Alabama	2000	5.6	44.0	35.0	84.0
	2010	5.2	44.0	41.0	91.0	8
	2020	6.9	47.0	44.0	99.0	18
	2025	7.8	56.0	46.0	110.0	31
Arkansas	2000	3.5	29.0	23.0	56.0
	2010	3.5	29.0	28.0	60.0	7
	2020	4.7	32.0	30.0	67.0	20
	2025	5.4	39.0	32.0	76.0	36
Delaware	2000	0.9	6.7	4.8	12.0
	2010	0.7	6.7	6.9	14.0	17
	2020	0.9	6.7	7.2	15.0	25
	2025	1.0	8.0	7.4	16.0	33
District of Columbia	2000	0.6	5.2	4.2	10.0
	2010	0.5	4.2	4.5	9.1	−9
	2020	0.6	3.9	4.7	9.1	−9
	2025	0.6	4.5	4.8	10.0	0
Florida	2000	23.0	200.0	150.0	360.0
	2010	22.0	210.0	220.0	450.0	25
	2020	32.0	230.0	250.0	510.0	42
	2025	37.0	290.0	270.0	590.0	64
Georgia	2000	7.5	58.0	44.0	110.0
	2010	7.4	60.0	57.0	120.0	9
	2020	10.0	68.0	64.0	140.0	27
	2025	12.0	84.0	68.0	160.0	45
Kentucky	2000	5.1	39.0	30.0	74.0
	2010	4.9	41.0	35.0	80.0	8
	2020	6.3	43.0	38.0	87.0	18
	2025	7.0	50.0	39.0	97.0	31
Louisiana	2000	5.1	38.0	30.0	73.0
	2010	4.7	41.0	37.0	83.0	14
	2020	6.0	43.0	43.0	92.0	26
	2025	7.0	51.0	46.0	100.0	37
Maryland	2000	5.1	42.0	31.0	78.0
	2010	4.4	40.0	41.0	86.0	10
	2020	5.8	41.0	44.0	90.0	15
	2025	6.6	49.0	45.0	100.0	28
Mississippi	2000	3.4	26.0	22.0	51.0
	2010	3.2	26.0	24.0	53.0	4
	2020	4.1	28.0	26.0	58.0	14
	2025	4.7	33.0	27.0	65.0	27
North Carolina	2000	9.4	72.0	53.0	130.0
	2010	9.2	80.0	78.0	170.0	31
	2020	12.0	88.0	89.0	190.0	46
	2025	14.0	110.0	94.0	210.0	62
Oklahoma	2000	3.8	31.0	27.0	62.0
	2010	3.7	34.0	37.0	74.0	19
	2020	5.0	37.0	42.0	85.0	37
	2025	5.8	45.0	45.0	96.0	55
South Carolina	2000	4.8	36.0	25.0	67.0
	2010	4.5	38.0	37.0	80.0	19
	2020	6.2	42.0	43.0	91.0	36
	2025	7.0	51.0	45.0	100.0	49
Tennessee	2000	6.9	54.0	41.0	100.0
	2010	6.6	56.0	54.0	120.0	20
	2020	8.7	61.0	59.0	130.0	30
	2025	9.8	73.0	62.0	140.0	40
Texas	2000	19.0	140.0	110.0	270.0
	2010	19.0	160.0	160.0	340.0	26
	2020	26.0	190.0	190.0	400.0	48
	2025	31.0	230.0	200.0	470.0	74
Virginia	2000	7.1	56.0	41.0	100.0
	2010	6.6	59.0	60.0	130.0	30
	2020	8.9	64.0	67.0	140.0	40
	2025	10.0	77.0	71.0	160.0	60
West Virginia	2000	2.7	21.0	16.0	40.0
	2010	2.5	22.0	19.0	44.0	10
	2020	3.2	22.0	20.0	46.0	15
	2025	3.5	26.0	21.0	50.0	25
West ∗
Alaska	2000	0.3	1.9	1.1	3.4
	2010	0.4	2.7	1.9	5.0	47
	2020	0.5	3.4	2.7	6.6	94
	2025	0.6	4.1	3.1	7.7	126
Arizona	2000	5.4	43.0	29.0	78.0
	2010	5.4	47.0	45.0	97.0	24
	2020	7.9	54.0	52.0	110.0	41
	2025	9.3	68.0	57.0	130.0	67
California	2000	28.0	240.0	180.0	440.0
	2010	24.0	220.0	230.0	480.0	9
	2020	36.0	250.0	270.0	560.0	27
	2025	44.0	320.0	300.0	660.0	50
Colorado	2000	3.1	26.0	21.0	49.0
	2010	3.7	34.0	35.0	72.0	47
	2020	5.4	40.0	44.0	90.0	84
	2025	6.3	50.0	48.0	110.0	124
Hawaii	2000	1.4	12.0	8.9	23.0
	2010	1.1	12.0	15.0	27.0	17
	2020	1.5	11.0	18.0	30.0	30
	2025	1.0	14.0	19.0	34.0	48
Idaho	2000	1.1	9.9	7.9	19.0
	2010	1.3	12.0	13.0	26.0	37
	2020	2.0	15.0	15.0	32.0	68
	2025	2.4	19.0	17.0	38.0	100
Montana	2000	0.9	8.4	6.8	16.0
	2010	1.0	9.3	11.0	21.0	31
	2020	1.5	11.0	13.0	25.0	56
	2025	1.7	13.0	14.0	29.0	81
Nevada	2000	1.8	12.0	7.1	21.0
	2010	2.0	15.0	12.0	29.0	38
	2020	2.8	18.0	14.0	35.0	67
	2025	3.3	22.0	16.0	42.0	100
New Mexico	2000	1.9	14.0	11.0	27.0
	2010	1.8	16.0	14.0	31.0	15
	2020	2.5	18.0	17.0	37.0	37
	2025	3.0	22.0	18.0	43.0	59
Oregon	2000	3.2	30.0	24.0	57.0
	2010	3.5	34.0	39.0	76.0	33
	2020	5.5	40.0	45.0	90.0	58
	2025	6.6	52.0	49.0	110.0	93
Utah	2000	1.4	12.0	8.8	22.0
	2010	1.6	15.0	16.0	32.0	45
	2020	2.4	19.0	20.0	41.0	86
	2025	3.0	24.0	23.0	50.0	127
Washington	2000	4.7	43.0	35.0	83.0
	2010	5.1	48.0	53.0	110.0	33
	2020	8.0	58.0	62.0	130.0	57
	2025	9.7	75.0	69.0	150.0	81
Wyoming	2000	0.5	3.7	2.9	7.0
	2010	0.5	4.9	4.7	10.0	43
	2020	0.7	5.8	6.0	13.0	86
	2025	0.9	7.2	6.7	15.0	114

NOTE. Created from data from Herbert et al.^19,A7

There is substantial variability by state in the projected numbers of people with AD, and this variability is also reflected between regions of the country (see Figs. 6 and 7 for estimated numbers of people with AD in 2000 and 2025). Some of the difference is clearly attributable to where the population aged 65 years and older resides in the U.S. However, between 2000 and 2025, it also is clear that across the country, states and regions are expected to experience double-digit percent increases overall in numbers of people with AD. Compared with the numbers of people with AD estimated for 2000, the South, Midwest, and West are expected to experience 30% to 50% (and greater) increases over this 25-year period. Some states in the West (Alaska, Colorado, Idaho, Nevada, Utah, and Wyoming) are projected to experience a doubling (or more) of their populations aged 65 years and older with AD.

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• Fig. 6. 

  Estimated number of people with AD by state, 2000.

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• Fig. 7. 

  Estimated number of people with AD by state, 2025.

The increased numbers of people with AD will have a marked impact on states' infrastructures and healthcare systems, and on families and caregivers. Although the projected increases in the Northeast are not nearly as marked as those in other regions of the U.S., this section of the country is the residence of a large proportion of people aged 65 years and older with AD.

Table 2 also underscores that the impact of AD is not equal across groups constituting people aged 65 years and older. Although there are dramatic increases in AD across elderly age groups, an especially significant impact is expected to occur in those aged 85 years and older.

A color-coded map of the U.S. (Fig. 8) provides an overview of the amount of change in the proportion of the U.S. population that is expected to be aged 65 years and older between 2000 and 2025. Of particular note are states that are anticipated to experience growth exceeding 80%.

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• Fig. 8. 

  Projected changes between 2000 and 2025 in AD prevalence by state.

3.7. Causes of dementia 

Alzheimer's disease is the most frequent cause of dementia. As shown in Fig. 9, AD accounts for 70% of all cases of dementia in Americans aged 71 years and older [2]. Vascular dementia accounts for 17% of cases of dementia, and other diseases and conditions, including Parkinson's disease, Lewy-body disease, frontotemporal dementia, and normal-pressure hydrocephalus, account for the remaining 13%. These data reflect the conclusions of an expert panel of physicians and psychologists regarding the primary cause of dementia in each subject found to have dementia in ADAMS [2]. Some subjects were also given secondary diagnoses in recognition of the growing awareness that dementia is often associated with more than one disease or condition. See Table 1 in the “Overview of AD” for a brief explanation of mixed dementia, i.e., dementia with symptoms and brain abnormalities associated with two or more diseases and conditions, e.g., AD plus vascular dementia.

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• Fig. 9. 

  Causes of dementia in people aged 71+, ADAMS, 2002.

The proportion of dementias attributable to AD increases with age. In people aged 90 years and older, AD accounts for 80% of all dementias, compared with 47% for people aged 71 to 79 years.

However, data are emerging to suggest that the attribution of dementia to specific types may not be as clear-cut as previously believed. According to Schneider et al., most older community-dwelling residents (mean age at death, approximately 88 years) undergo changes in the brain suggestive of disease, and those with dementia often have evidence of multiple types of brain disease [20].

Of the first 141 autopsies [20], 80 involved brain tissue from people with an intermediate or high likelihood of having AD based on a clinical evaluation that included medical history, neuropsychological tests, and physical examination with an emphasis on neurologic function. Less than half of the 80 autopsies showed evidence of AD alone. Nearly a third showed evidence of AD and infarcts; 15% showed evidence of AD and Parkinson's disease or Lewy-body disease; 5% showed evidence of all three diseases; and 2.5% showed evidence of AD and brain disease other than infarcts and Parkinson's disease or Lewy-body disease. Although 50% of participants with no or low likelihood of having AD based on clinical evaluation also had no evidence of dementia on autopsy, approximately one third showed evidence of brain infarcts. Thus, there is reason to believe that the causes of dementia may be much more complicated than originally thought.

3.8. Looking to the future 

The number of Americans surviving into their 80s and 90s and beyond is expected to grow because of advances in medicine and medical technology, as well as social and environmental conditions. Because the incidence and prevalence of AD and other dementias increase with age, the number of people with these conditions will also grow rapidly:

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4. Mortality 

Alzheimer's disease was the sixth leading cause of death across all ages in the U.S. in 2006. It was the fifth leading cause of death for those aged 65 years and older [23]. In 2006, AD was reported as the underlying cause of death for 72,914 people. However, underreporting of AD as an underlying cause of death is well-documented [24], [25], [26], [27]. Death rates from the disease can vary a great deal across states, and result from differences in state demographics and reporting practices. On the other hand, death rates among people with AD dramatically increase with age. From one community-based, 15-year prospective study, the mortality rate for people aged 75 to 84 years with AD was nearly 2.5 times greater than for those aged 55 to 74 years with the disease. At age 85 years and older, the rate was nearly twice that of those with AD aged 75 to 84 years [28]. Two thirds of those dying of dementia did so in nursing homes, compared with 20% of cancer patients and 28% of people dying from all other conditions.

4.1. Deaths from AD 

Although the total number of deaths attributed to other major causes of deaths is decreasing, those attributable to AD continue to increase. In 1991, only 14,112 death certificates recorded AD as the underlying cause [29]. Comparing changes in selected causes of death between 2000 and 2006 (Fig. 10), deaths attributed to AD increased 47.1%, whereas those attributed to the number one cause of death, heart disease, decreased 11.5%. Table 3 compares the number of deaths and the percent change for selected causes of death in 2000 and 2006.

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• Fig. 10. 

  Percentage changes in selected causes of death between 2000 and 2006.

Table 3. Percentage changes in selected causes of death, 2000 and 2006

Although deaths attributed to AD are increasing, underreporting of this condition on death certificates results in significant underestimates of the public-health impact of AD. A number of studies documented substantial underreporting of AD on death certificates as an underlying or contributory cause of death. Underreporting AD as a cause of death occurs in the community, as well as in nursing homes [25], [26], [27].

An increased risk of death may also apply to people newly diagnosed with AD. One 2004 study noted that people newly diagnosed with AD survived about half as long as those of similar age who did not have the disease [33]. In that study, the average survival time was 4 to 6 years after diagnosis, but survival can be as long as 20 years from the first symptoms (although these early symptoms may be fairly subtle and not immediately recognized).

The mechanisms by which dementia leads to death may create ambiguity about the underlying cause of death. Severe dementia frequently causes such complications as immobility, swallowing disorders, or malnutrition. These complications can significantly increase the risk of developing pneumonia, which was found in several studies to be the most commonly identified cause of death among elderly people with AD and other dementias. One researcher described the situation as a “blurred distinction between death with dementia and death from dementia” [28].

4.2. State-by-state deaths from AD 

Table 4 provides information on the number of deaths attributable to AD by state and overall in the U.S. This information was obtained from death certificates, and reflects the underlying cause of death: “the disease or injury which initiated the train of events leading directly to death” [34]. Table 4 also provides age-adjusted rates by state. Age adjustment should not be viewed as providing a measurement of actual risk, but as providing an indication of relative risk between states. Thus, in terms of relative comparisons, the highest age-adjusted rates for deaths attributable to AD occurred in southern states (Alabama, Louisiana, South Carolina, and Tennessee), with the exceptions of Arizona and Washington State. The age-adjusted rate for Florida would suggest, on the surface, that the risk of mortality from AD is more modest in that state compared with others. Florida is home to a large number of people aged 65 years and older, and this is the age group at highest risk for AD and death from this disease. However, it may well be that the large number of active, healthy retirees aged 65 years and older living in the state has an impact on producing its more modest levels of age-adjusted relative risks.

Table 4. Number of deaths due to AD, and age-adjusted rates^∗ per 100,000 population, by state, 2005

NOTE. Created from data from Kung et al. [34].

4.3. Death rates by age, gender, and ethnicity 

Although AD and death from AD can occur in people under age 65 years, the primary occurrence of AD is in the elderly. However, as shown in Table 5, death rates for AD increase dramatically between the elderly age groups of 65 to 74, 75 to 84, and 85+ years. Increased rates were also apparent between 2004 and 2005 for these older age groups. To put these age-related differences into perspective, for U.S. deaths in 2005, the differences in total mortality rates between ages 65 to 74 years and 75 to 84 years was 2.5-fold, and between ages 75 to 84 years and 85 years and older, 2.6-fold. For heart disease, the differences were 2.9-fold and 3.2-fold, respectively. For all cancers, the differences were 1.7-fold and 1.3-fold, respectively. The corresponding differences for AD were 8.6-fold and 4.9-fold. The large increase in death rates attributable to AD among America's oldest age groups underscores the impact of having neither a cure nor highly effective treatments for AD [34].

Table 5. U.S. AD death rates (per 100,000) by age, for 2000, 2004, and 2005

NOTE. Created from data from Kung et al. [34].

In 2005, the AD death rate for females was approximately twice that of males, and this relationship was seen across racial and ethnic groups. White females had the highest death rates for AD. As shown in Table 6, there was substantial variability in rates among racial groups and by gender [34]. However, the lower death rates among non-Hispanic blacks and those of Hispanic origin probably reflect the relatively younger age distributions for those two groups, compared with non-Hispanic whites, rather than a true lower occurrence of AD.

Table 6. U.S. AD death rates (per 100,000) by race/ethnicity and gender, 2005

NOTE. Created from data from Kung et al. [34].

4.4. Location of death 

A study of national death certificates for 2001 found that 66.9% of people aged 65 years and older who died of dementia did so in nursing homes [35] (Table 7). In contrast, 20.6% of patients dying from cancer died in nursing homes. Among those dying of other conditions, 28% died in nursing homes. Location of death varied significantly across regions of the country. For example, the percentage of dementia deaths in hospitals ranged from 5% in Rhode Island to 37% in the District of Columbia. Those with dementia died more frequently in hospitals in southeastern states.

Table 7. Location of death for people aged 65 and older, 2001

NOTE. Created from data from Mitchell et al. [35].

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5. Caregiving 

5.1. Paid caregivers 

In the next 2 years, the first baby boomers will reach their 65th birthdays. By 2029, all baby boomers will be at least 65 years old. The estimated 70 million people aged 65 years and older will have a significant impact on the U.S. healthcare system. Older Americans represent approximately 12% of the population. However, they comprise 26% of physician office visits, approximately a third of all hospital stays, a third of all prescriptions, nearly 40% of all medical emergency responses and 90% of nursing-home residents, according to the National Academy of Sciences [36]. Alzheimer's disease will clearly require a significant portion of future healthcare workforce needs.

In its Executive Summary, the National Academy of Sciences stated that an estimated 3.5 million additional formally trained healthcare providers will be required by 2030 (more than a one-third increase in the current ratio of providers to the total population) just to maintain current levels of staffing. The Executive Summary also documents that the vast majority of healthcare workers who provide the bulk of services to the elderly do not have training in geriatrics. Currently, less than 1% of physician assistants specialize in geriatrics. A similar percentage of pharmacists and registered nurses are certified in geriatrics. Only about 4% of social workers (33% of what is needed) specialize in geriatrics.

As of 2007, the number of physicians certified in geriatric medicine totaled 7128. Those certified in geriatric psychiatry totaled 1596. By 2030, the number of geriatricians needed is estimated at approximately 36,000. Some estimate that the increase from present levels will amount to less than 10%, whereas others believe there will be a net loss of physicians for geriatric patients.

Thus, significant formal healthcare staffing needs are anticipated to be unmet or underserved as America approaches unparalleled demands for these services in its elderly population. The National Academy of Sciences report provided only a snapshot of health-worker needs and the shortages thereof affecting people with AD and other dementias and their families. Increased staffing to meet the needs of the dementia population must include not only increased numbers of staff, but also specific dementia-care training of physicians, nurses, social workers, and other healthcare providers in these settings.

5.2. Family caregiving 

Almost 10 million Americans provide unpaid care for a person with AD or other dementias. These unpaid caregivers are primarily family members, but also include friends and neighbors. In 2008, they provided 8.5 billion hours of unpaid care, a contribution to the nation valued at $94 billion.

Caring for a person with AD or other dementias is often very difficult, and many family and other unpaid caregivers experience high levels of emotional stress and depression as a result. Caregiving also has a negative impact on the health, employment, income, and financial security of many caregivers.

In 2008, 9.9 million family members, friends, and neighbors provided unpaid care for a person with AD or other dementias.^A8 Table 8 shows the number of family and other unpaid caregivers for the U.S. and each state. The number of caregivers by state ranged from about 15,000 in Alaska to 1.1 million in California.

Table 8. Number of AD and other dementias caregivers, hours of unpaid care, and economic value of the care, by state, 2008

NOTE. Created from data from the 2000 BRFSS, U.S. Census Bureau, National Alliance for Caregiving and AARP [66].^A8–A10

Some people with AD and other dementias have more than one unpaid caregiver, e.g., people who live with their primary caregiver and also receive help from another relative, friend, or neighbor [37].

Many people with AD or other dementias also have serious medical conditions such as diabetes and congestive heart failure [38]. Their family and other unpaid caregivers often help manage these other medical conditions, in addition to the AD or other dementias. Some of these caregivers say that the person's AD or other dementia is his or her main health problem, whereas others say that another serious medical condition is his or her main health problem [37]. On average, about 29% of all unpaid caregivers of older people in the U.S. say that they are caring for a person with AD or other dementia, and one quarter to one third of these caregivers say that the person's AD or other dementia is his or her main health problem.^A8

In 2008, 9.9 million family members and other unpaid caregivers of people with AD and other dementias provided 8.5 billion hours of care. This number represents an average of 16.6 hours of care per caregiver per week, or 863 hours of care per caregiver per year.^A9 Table 8 shows the total hours of unpaid care provided in the U.S. and each state. Even in a small state like Rhode Island, caregivers of people with AD and other dementias provided 30 million hours of unpaid care in 2008.

Caregivers of people with AD and other dementias provide more hours of help, on average, than caregivers of other older people. The number of hours varies in different studies. One study found that 23% of caregivers of people with AD and other dementias provided more than 40 hours a week, compared with 16% of caregivers of other older people [37]. Another study found that 40% of caregivers of people with AD and other dementias provided more than 40 hours a week of help, compared with 28% of caregivers of other older people. [39].

The average number of hours of unpaid care provided for people with AD and other dementias increases as the person's disease worsens [40]. The number of hours of unpaid care is also greater, on average, for people with medical conditions coexisting with AD or other dementias [40].

Some family and other unpaid caregivers who live with a person who has AD or other dementias provide supervision and help 24 hours a day, 7 days a week, getting up with the person at night and assisting in all daily activities [41], [42]. Such around-the-clock care is needed when a person cannot be left alone because of the risk of wandering, getting lost, and other unsafe activities.

In 2008, the economic value of the care provided by family and other unpaid caregivers of people with AD and other dementias was $94 billion. This number represents 8.5 billion hours of care valued at $11.10 per hour, which is the average of the minimum wage ($5.85 per hour) and the average wage of a home health aide in July 2008 ($16.35 per hour).^A10 Table 8 shows the value of care provided by family and other unpaid caregivers for the U.S. and each state.

Unpaid caregivers of people with AD and other dementias provided care valued at more than $1 billion in each of 31 states. Unpaid caregivers in each of five states (California, Florida, New York, Pennsylvania, and Texas) provided care valued at more than $4 billion.

About 60% of family and other unpaid caregivers of people with AD and other dementias are women [37], [39], [43]. These caregivers provide assistance for various relatives and nonrelatives. One study found that 87% of caregivers of people with AD and other dementias were taking care of a relative, including a parent or parent-in-law (57%), a grandparent (11%), or a spouse (6%). The remaining 13% of caregivers were taking care of a nonrelative, including a friend or neighbor [37].

Some caregivers live with the people for whom they are providing care, and other caregivers do not. One study found that 23% of caregivers of people with AD and other dementias lived in the same household as the person for whom they were providing care [37]. This proportion varies in different studies, depending on how caregivers were recruited for a particular study. Another study of caregivers of people with AD and other dementias who were receiving long-term care insurance benefits found that two thirds of caregivers lived in the same household as the person for whom they were providing care [39].

Caregivers range in age from very young to very old. One study found that 19% of caregivers of people with AD and other dementias were under age 35 years; 29% were aged 35 to 49; 37% were age 50 to 64 years; and 14% were age 65 years and older (Fig. 11) [37]. Their average age was 48 years.

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• Fig. 11. 

  Ages of AD and other dementia caregivers, 2003.

In addition, a 2003 survey found that about 250,000 American children aged 8 to 18 years are unpaid caregivers for a person with AD or another dementia [44]. These children represent 18% of the 1.4 million American children aged 8 to 18 years who provide unpaid help for any person [44].

Ten percent of the 9.9 million family and other unpaid caregivers of people with AD and other dementias live more than 2 hours from the person for whom they provide care, and another 4% live 1 to 2 hours away [37]. Depending on the definition of “long-distance caregiving,” these numbers indicate that 990,000 to 1.4 million caregivers of people with AD and other dementias are “long-distance caregivers.”

The kinds of help provided by family and other unpaid caregivers depend on the needs of the person with AD or other dementia, and change as the disease worsens. Caregiving tasks can include [37], [39]:

As shown in Fig. 12, family and other unpaid caregivers of people with AD and other dementias are more likely than caregivers of other older people to assist with all kinds of personal care, e.g., bathing a person (35% of AD and dementia caregivers versus 25% of other caregivers) and dealing with bladder and bowel incontinence (32% of AD and dementia caregivers versus 13% of other caregivers) [37]. These tasks are often made more difficult by the confusion, disorientation, and agitation of a person with dementia, who may be unable to cooperate and may even resist care.

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• Fig. 12. 

  Percentage of AD and other dementia caregivers vs. caregivers of the other older people who provide help with specific daily tasks, 2003.

When a person with AD or another dementia moves to an assisted-living facility or nursing home, the kinds of help provided by his or her family and other unpaid caregivers usually change, but many caregivers continue to assist with financial and legal affairs and arrangements for medical care, and to provide emotional support. Some also continue to help with bathing, dressing, and other personal-care needs [45], [46].

Because AD and other dementias usually progress slowly, most caregivers spend many years in a caregiving role. At any one time, 32% of family and other unpaid caregivers of people with AD and other dementias have been providing help for 5 years or longer, and 39% have been providing care for 1 to 4 years [37]. In contrast, 27% of caregivers of other older people have been providing help for 5 years or longer, and 32% have been providing care for 1 to 4 years. Fig. 13 shows the percentage of AD and other dementia caregivers versus caregivers of other older people who have provided care for various lengths of time.

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• Fig. 13. 

  Duration of caregiving, 2003.

Caring for a person with AD or other dementias poses special challenges. Although memory loss is the best-known symptom, these diseases also cause loss of judgment, orientation, and ability to understand and communicate effectively, and frequently, changes in personality and behavior. Individuals require increasing levels of supervision and personal care, and many caregivers experience high levels of stress and negative effects on their health, employment, income, and financial security.

5.2.8.1. Impact on a caregiver's emotional well-being 

Most family and other unpaid caregivers are proud of the help they provide, and some manage caregiving tasks with little difficulty [47], [48]. Yet many caregivers experience high levels of stress and depression associated with caregiving:

5.2.8.2. Impact on a caregiver's health 

Many caregivers of people with AD and other dementias experience negative health outcomes associated with caregiving:

5.2.8.3. Impact on a caregiver's employment 

Many caregivers of people with AD and other dementias need to quit work, reduce their work hours, or take time off because of caregiving responsibilities:

5.2.8.4. Impact on a caregiver's income and financial security 

Family and other unpaid caregivers who turn down promotions, reduce their work hours, and quit work lose their job-related income and benefits, including employer contributions to their own retirement savings. In addition, people with AD and other dementias use substantial amounts of paid care. Some of this care is covered for some people by public programs and private insurance, but the person and family must pay out-of-pocket for much of the care:

Since 2003, a few states have added questions about family caregiving for people with AD and other dementias to their Behavioral Risk Factors Surveillance System (BRFSS) survey. The BRFSS fields an annual telephone survey of a large, representative sample of each state's residents that is conducted by states with assistance from the U.S. Centers for Disease Control and Prevention (CDC) [66]. The BRFSS survey findings on family caregiving for people with AD and other dementias are now available for Washington State and North Carolina. In addition, in 2007, Los Angeles County added questions about caregiving for people with these conditions to its public-health survey, and the findings of that survey are available. The findings of these three surveys generally support the national-level data presented above, but also suggest some important differences among states and localities in the number of family and other unpaid caregivers of people with AD and other dementias:

The survey findings from Washington State, North Carolina, and Los Angeles County differed in the proportion of family and other unpaid caregivers who said they provided help for a person with AD, dementia, memory loss, or memory impairment. These differences may reflect variations in the wording of the survey questions, or real differences in the prevalence of caregiving for people with AD and other dementias by state and locality.

In 2008, Florida, New York, and Texas added questions about caregiving, including caregiving for people with AD and other dementias, to their BRFSS surveys. Once available, the findings from these surveys will help clarify the extent of variation in the proportion of family and other unpaid caregivers who provide care for people with AD and other dementias across the states.

In addition to information about the number and proportion of caregivers for people with AD and other dementias, the Washington State, North Carolina, and Los Angeles County surveys provided extensive information about the characteristics of these caregivers. As noted earlier, 31% of people who identified themselves as caregivers in the 2007 Washington State survey said that the person for whom they provided care had “a problem with memory loss or a condition like AD or a related dementia.” Of these caregivers, 36% said that AD or another dementia was the person's main health problem, and the other 64% said that the person had another main health problem, such as heart disease, diabetes, cancer, stroke, or arthritis, in addition to his or her memory loss, AD, or other dementia [67].

Table 9 shows selected findings from the Washington State survey for caregivers who said that the person for whom they provided care had “a problem with memory loss or a condition like AD or a related dementia.” Because the questions about caregiving were embedded in the state's BRFSS survey, the findings include responses to the caregiving questions and responses to other survey questions that can be analyzed for caregivers of people with AD and other dementias, because these caregivers were identified in the survey. As noted in Table 9:

Table 9. Family and other unpaid caregivers of people with AD, other dementia and/or memory loss, Washington State, 2007

Characteristics of caregiver and care recipient	Caregivers of people with Alzheimer's/dementia and/or memory loss n=199,861
Caregiver age
18–44	30%
45–64	53%
65+	16%
Caregiver gender
Female	59%
Male	41%
Caregiver employment status
Employed/homemaker/student	69%
Unemployed/retired/unable to work	31%
Caregiver race/ethnicity
White/non-Hispanic	90%
Black/non-Hispanic	1%
Other/non-Hispanic	6%
Hispanic	3%
Caregiver marital status
Married or living with a partner	69%
Divorced, widowed, or separated	15%
Never married	16%
Children in the caregiver's household
None	72%
One or more	27%
Caregivers' self-reported activity limitation due to health problems	27%
Caregiver physical activity
Meets physical-activity recommendations	56%
Insufficient physical activity	36%
No physical activity	8%
Caregiver income
Less than $20,000	10%
$20,000–$49,000	48%
$50,000 or more	42%
Care recipient's age
Under 45	6%
45–64	16%
65–74	14%
75–84	28%
85+	36%
Care recipient gender
Female	71%
Male	29%
Care recipient's relationship to caregiver
Parent or parent-in-law	51%
Grandparent or other family member	20%
Friend or neighbor	16%
Spouse or partner	10%
Client or patient	2%
Care recipient's distance from caregiver
Lives with caregiver	26%
Less than 20minutes away	44%
20–60minutes away	17%
1–2hours away	7%
More than 2hours away	6%
Respondent is primary caregiver	34%
Hours of care provided per week
0–8	45%
9–19	16%
20–39	14%
40+	25%
Areas in which care recipient needs most help (caregiver could name up to two)
Learning, remembering, confusion	41%
Self-care	39%
Moving around	26%
Feeling anxious or depressed	23%
Communicating with others	14%
Getting along with people	9%
Greatest difficulty faced by caregiver (caregiver could name up to two)
Creates stress	48%
Not enough time for himself/herself	18%
Affects family relationships	15%
Not enough time for family	14%
Financial burden	13%
Interferes with work	11%
Creates or aggravates health problems	5%
Services that would be helpful for caregivers
Information about local programs	38%
Money to pay for additional resources	30%
Respite care (breaks from caregiving)	25%
Family consultation/counseling	22%
Education	19%
Other	7%

NOTE. Created from data from the Washington State Behavioral Risk Surveillance Survey, 2007 [67].

The findings from Washington State show that stress is the greatest difficulty faced by caregivers of people with AD and other dementias. In addition, 18% of caregivers said that they did not have enough time for themselves; 14% said that they did not have enough time for their families; and 13% answered that caregiving created a financial burden for them. More than one third said that information about local programs would help with caregiving; 30% responded that money for additional resources would benefit them; one quarter selected respite care as an important need; and 22% said that family consultation or counseling would help them [67].

In North Carolina, 42% of people who identified themselves as caregivers in the 2005 North Carolina survey said that the person for whom they provided care had “a problem with memory loss or confusion or a disorder like AD” [70]. Information is available about caregiver gender, race, age, education, and household income for caregivers who did and did not say the person for whom they provided care had memory loss or confusion or a disorder like AD.

In Los Angeles County, 25% of people who identified themselves as caregivers in the 2007 survey said that the person for whom they provided care had “AD or a related form of memory impairment” [72]. The survey data indicate that:

In 2009, all states will include the following question about caregiving in their BRFSS surveys:

“People may provide regular care or assistance to a friend or family member who has a health problem, long-term illness, or disability. During the past month, did you provide any such care or assistance to a friend or family member?”

The CDC also released an approved set of nine questions about caregiving that states could add to their BRFSS surveys beginning in 2009. This set of questions includes the question, “During the past year, has the person you care for experienced changes in thinking or remembering?” This question can be further elaborated by the interviewer to mean that the person “had more difficulty remembering people, places, or things, or understanding or making decisions as easily as they once did.”

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6. Use and costs of healthcare, long-term care, and hospice care 

People with AD and other dementias are high users of healthcare and long-term care services. In 2004, total per-person payments from all sources for healthcare and long-term care were three times higher for Medicare beneficiaries aged 65 years and older with AD and other dementias than for other Medicare beneficiaries in the same age group ($33,007, compared with $10,603 per person) [73].^A11 Table 10 shows the total per-person payments and the per-person payments from Medicare, Medicaid, and other sources for healthcare and long-term care services for Medicare beneficiaries aged 65 years and older who did or did not have AD or other dementias.

Table 10. Average per-person payments by source for healthcare and long-term care services, Medicare beneficiaries aged 65 and older with and without AD and other dementias, 2004

NOTE. Created from data from Bynum, Medicare Current Beneficiary Survey [73].

Most older people with AD and other dementias have Medicare,^A12 and their high use of hospital and other healthcare services translates into high costs for Medicare. In 2004, average Medicare payments per person for beneficiaries aged 65 years and older with AD and other dementias were almost three times higher than average Medicare payments for other Medicare beneficiaries in the same age group ($15,145, compared with $5272 per person) [73] (Table 10).

Medicaid pays for nursing-home and other long-term care services for some people with very low income and few assets,^A13 and the high use of these services by people with AD and other dementias translates into high costs for Medicaid. In 2004, average Medicaid payments per person for Medicare beneficiaries aged 65 years and older with AD and other dementias were more than nine times higher than average Medicaid payments for other Medicare beneficiaries in the same age group ($6605, compared with $718 per person) [73] (Table 10).

With one exception, average per-person payments from each other source were also higher for Medicare beneficiaries with AD and other dementias than for other Medicare beneficiaries. As shown in Table 10, average per-person payments by private insurance were 1.3 times higher ($1847, compared with $1466) [73]. Average per-person payments by other payers, including the Department of Veterans Affairs, were 2.5 times higher ($519, compared with $211). Out-of-pocket payments were 1.3 times higher ($2464, compared with $1916), and uncompensated care was 1.3 times higher ($261, compared with $201). Only average per-person payments by health-maintenance organizations were lower for people with AD and other dementias than for other Medicare beneficiaries ($410, compared with $704) [73].

American businesses also incur high indirect costs attributable to lost productivity, missed work, and replacement expenses for employees who are caring for a person with AD or other dementias and who have to reduce their hours, take time off, or quit working altogether because of the demands of caregiving.

In 2005, the direct costs to Medicare and Medicaid for the care of people with AD and other dementias and the estimated indirect costs to businesses for employees who were caregivers of people with AD and other dementias amounted to more than $148 billion, including:

All of these costs will continue to rise each year as the number of people with AD and other dementias grows with the aging of our population.

6.1. Use and costs of healthcare services 

People with AD and other dementias have more than three times as many hospital stays as other older people. Their total Medicare costs and Medicare costs for hospital care are almost three times higher than for other Medicare beneficiaries. The use and costs of healthcare services for people with other serious medical conditions are strongly affected by the presence or absence of AD and other dementias, i.e., people with serious medical conditions such as coronary heart disease, diabetes, congestive heart failure, and cancer who also have AD or other dementias have higher use and costs of healthcare services than people with these medical conditions but no AD or other dementia.

Older people with AD and other dementias have more hospital stays, skilled-nursing home stays, and home healthcare visits than other older people. As noted above, almost all people aged 65 years and older have Medicare, and the following information about the use of healthcare services is based primarily on data from Medicare claims and surveys of Medicare beneficiaries:

Most people with AD and other dementias have one or more other serious medical conditions. For example, in 2004, 26% of Medicare beneficiaries aged 65 years and older with AD and other dementias also had coronary heart disease; 23% also had diabetes; 16% also had congestive heart failure; and 13% also had cancer [73] (Table 11).

Table 11. Percentages of Medicare beneficiaries aged 65 and older with AD and other dementias who had specific coexisting medical conditions, 2004

NOTE. Created from data from Bynum, Medicare Current Beneficiary Survey [73].

As shown in Table 11, the percentages of Medicare beneficiaries with AD and other dementias who have various coexisting medical conditions clearly sums to more than 100%. This means that many Medicare beneficiaries with AD and other dementias have more than one other serious medical condition.

People with serious medical conditions and AD or other dementias are more likely to be hospitalized and to stay in the hospital longer than people with the same serious medical conditions but no AD or other dementia:

People with AD and other dementias are most often hospitalized for treatment of their coexisting medical conditions [79], [80], and data from an analysis of 1999 Medicare claims suggest that some of these hospitalizations are potentially preventable [38]. A potentially preventable hospitalization is defined as a hospitalization for a condition that can be prevented altogether or whose course can be mitigated with optimum outpatient management, thus preventing the hospitalization. In 1999, Medicare beneficiaries aged 65 years and older with AD and other dementias were 2.4 times more likely than other Medicare beneficiaries in that age group to have a potentially preventable hospitalization [38].

One study of a large, nationally representative sample of people aged 70 years and older found that those with cognitive impairment who said (or whose proxy respondent said) that a doctor had told them they had AD or another dementia had significantly more physician contacts (including both in-person and telephone contacts) and significantly fewer hospital days than a comparison group of people with cognitive impairment who said (or whose proxy respondent said) that a doctor had not told them they had AD or another dementia [81]. This finding suggests that recognition of AD or another dementia by the doctor, the person with the condition, and/or the family may increase optimum outpatient management and reduce hospital days.

In 2004, average per-person payments from all sources for healthcare services, including hospital, physician, and other medical providers, skilled nursing facility, home healthcare, and prescription medications, were higher for Medicare beneficiaries aged 65 years and older with AD and other dementias than for other Medicare beneficiaries in the same age group:

Average per-person payments for many healthcare services are higher for people who have other serious medical conditions and AD or other dementias than for people who have the other serious medical conditions but no AD or other dementias. Table 13 shows the total average per-person Medicare payments and average per-person Medicare payments for selected services for Medicare beneficiaries with other serious medical conditions who either do or do not have AD or other dementias [78]. With one exception, Medicare beneficiaries with a serious medical condition and AD or another dementia had higher average per-person payments than Medicare beneficiaries with the same medical conditions but no AD or other dementias. The one exception involved average per-person payments for physician visits for people with congestive heart failure, where the average per-person payment was $29 lower for Medicare beneficiaries with congestive heart failure and AD or other dementias than for Medicare beneficiaries with congestive heart failure and no AD or other dementias ($1470 per person, compared with $1499 per person) [78].

Table 13. Average per-person payments by type of service and medical condition, Medicare beneficiaries with or without AD and other dementias, 2006

NOTE. Created from data from Bynum, National 20% Sample Medicare Fee-for-Service Beneficiaries [78].

6.2. Use and costs of long-term care services 

Most people with AD and other dementias live at home, usually with help from family and friends. As their dementia progresses, they generally receive more and more care from family and other unpaid caregivers. As noted in terms of caregiving, some receive around-the-clock supervision and help from a spouse or other unpaid caregiver who lives with them and provides care as needed, 24 hours a day. Many people with AD and other dementias also receive paid services at home, in adult day centers, in assisted living facilities or nursing homes, or in more than one of these settings at different times in the often long course of their illness. Given the high average cost of these services, e.g., adult day-center services ($64 a day), assisted living ($36,372 a year), and nursing-home care ($69,715 to $77,380 a year), none of these services is affordable for long for most people with AD and other dementias or their families. Medicaid is the only federal program that will cover the long nursing home stays that most people with dementia require in the late stages of their illness, but Medicaid requires beneficiaries to be poor to receive coverage. Private long-term care insurance is only an option for those healthy and wealthy enough to purchase policies before developing dementia.

At any one time, about 70% of people with AD and other dementias are living at home [82]. Most of these people 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-center care. A study of older people who needed help performing daily activities, such as dressing, bathing, shopping, and managing money, found that those who also had cognitive impairment were more than twice as likely as those who did not have cognitive impairment to receive paid home care (29% of those with cognitive impairment received paid services, compared with 12% of those who did not have cognitive impairment) [83]. In addition, those who had cognitive impairment and received paid services used almost twice as many hours of care monthly as those who did not have cognitive impairment (206 hours, compared with 108 hours).

People with AD and other dementias make up a large proportion of all elderly people who receive nonmedical home care, adult day-center services, assisted living care, and nursing-home care:

Costs are high for care at home or in an adult day center, assisted living facility, or nursing home. Except where otherwise specified, the cost figures below are for all service users, and not just those with AD and other dementias:

Few individuals with AD or other dementias and their families can afford to pay for long-term care services for as long as these services are needed:

In 2002, about 6 million people had long-term care insurance policies, which paid out $1.4 billion for services for those who filed claims in that year [98]. Private health and long-term care insurance policies funded only about 7.2% of national long-term care spending in 2005 [99]. However, long-term care insurance plays a significant role in paying for the care of people with dementia who purchase policies before developing the disease.

A study of people filing claims on their long-term care insurance policies for the first time during 2003, 2004, and 2005 showed that about two thirds of those filing claims for care in assisted living residences (63%) and nursing homes (64%) had cognitive impairment [100]. This figure was 28% for those filing claims for paid home care.

Medicaid covers nursing-home care and other long-term care services in the community for individuals meeting program requirements regarding level of care, income, and assets. To receive coverage, beneficiaries must have low incomes or must be poor because of their expenditures on these services. The federal government and states share in managing and funding the program, and states differ greatly in the services covered by their Medicaid programs.

Medicaid plays a critical role for people with dementia who can no longer afford to pay for long-term care expenses on their own:

Much of the difference in Medicaid payments for beneficiaries with AD and other dementias, compared with other Medicaid beneficiaries, is attributable to Medicaid payments for beneficiaries with AD and other dementias who live in nursing homes and other residential care facilities, such as assisted living facilities. Including the large Medicaid payments for beneficiaries with AD and other dementias in nursing homes and other residential care facilities, total Medicaid payments for beneficiaries aged 65 years and older with AD and other dementias were almost as high in 2004 as total Medicaid payments for all other Medicaid beneficiaries in that age group combined ($19 billion, compared with $22.6 billion) [73]. This was true even though Medicaid beneficiaries aged 65 years and older with AD and other dementias accounted for only 18% of all Medicaid beneficiaries aged 65 years and older in that year.

Although Medicare, Medicaid, and other sources such as the Veterans Health Administration and private insurance pay for most hospital and other healthcare services and for some long-term care services, older people with AD and other dementias and their families still incur high out-of-pocket costs. These costs are for Medicare and other health-insurance premiums, deductibles, and copayments, and healthcare and long-term care services that are not covered by Medicare, Medicaid, or other sources.

In 2004, Medicare beneficiaries aged 65 years and older with AD and other dementias had average per-person out-of-pocket costs amounting to $2464 for healthcare and long-term care services that were not covered by other sources [73] (Table 10). Average per-person out-of-pocket costs for people with AD and other dementias were highest for those living in nursing homes and assisted living facilities ($16,689 per person). Out-of-pocket costs for people aged 65 years and older with AD and other dementias who were living in the community were 1.2 times higher than the average for all other Medicare beneficiaries in that age group ($2298 per person for people with AD and other dementias, compared with $1916 per person for all other Medicare beneficiaries) [73].

Before the implementation of the Medicare Part D Prescription Drug Benefit in 2006, out-of-pocket expenses were increasing annually for Medicare beneficiaries [101]. In 2003, out-of-pocket costs for prescription medications accounted for about one quarter of the total out-of-pocket costs for all Medicare beneficiaries aged 65 years and older [102]. Other important components of out-of-pocket costs included premiums for Medicare and private insurance (45%) and payments for hospital, physician, and other healthcare services that were not covered by other sources (31%). With the implementation of the Medicare Part D Prescription Drug Benefit, out-of-pocket costs for prescription drugs are expected to drop, and this change will benefit Medicare beneficiaries with AD and other dementias. Clearly, however, the biggest component of out-of-pocket costs for people with AD and other dementias is nursing-home and other residential care, and out-of-pocket costs for these services are likely to continue growing over time.

6.3. Use and costs of hospice care 

Hospices provide medical care, pain management, and emotional and spiritual support for people who are dying, including people with AD and other dementias. Hospices also provide emotional and spiritual support and bereavement services for families of people who are dying. The main purpose of hospice care is to allow individuals to die with dignity and without pain and other distressing symptoms that often accompany terminal illness. Individuals can receive hospice care in their homes, assisted living residences, or nursing homes. Medicare is the primary source of payment for hospice care, but private insurance, Medicaid, and other sources also pay for hospice care.

The National Hospice and Palliative Care Organization estimates that in 2007, about 10% of all people admitted to hospices in the U.S. had a primary hospice diagnosis of AD or other dementias [103]. Likewise, an extensive review of Medicare hospice records found that in 2005, 9.8% of people who received Medicare-covered hospice benefits were people with a primary hospice diagnosis of AD or other dementias, including 5.7% (43,000 people) with a primary hospice diagnosis of AD, and 4.1% (31,000 people) with a primary hospice diagnosis of another dementia [104].

The number of people with AD and other dementias who receive hospice care has increased in recent years. In 2001, only 6.8% of all hospice admissions were people with a primary hospice diagnosis of AD or other dementia, compared with 10.1% in 2007 [103], [105].

Hospice length of stay has also increased in recent years. The average length of stay for hospice beneficiaries with a primary hospice diagnosis of AD increased from 66 days in 2000 to 99 days in 2005. Likewise, the average length of stay for hospice beneficiaries with a primary hospice diagnosis of dementia increased from 57 days in 2000 to 85 days in 2005 [104].

In 2004, total payments from all sources for hospice care of Medicare beneficiaries aged 65 years and older with AD and other dementias amounted to $2.8 billion [73]. Average per-person payments for hospice care for beneficiaries aged 65 years and older with AD or other dementias were eight times higher than for other Medicare beneficiaries in the same age group ($976 per person, compared with $120 per person) [73].

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7. Special report: MCI and early-stage AD 

This special section of 2009 Alzheimer's Disease Facts and Figures highlights what is known about MCI, and identifies implications and opportunities for advancing AD research.

Mild cognitive impairment is a condition in which a person has problems with memory, language, or another essential cognitive function that are severe enough to be noticeable to others and that show up on cognitive tests, but are not severe enough to interfere with daily life. Studies indicate that as many as 10% to 20% of people aged 65 years and older have MCI. It is an integral part of our understanding of AD and other dementias, because a significant portion of people with MCI, but not all, will later develop AD. Questions remain to be answered about the relationship between MCI and the subsequent development of AD and other dementias. It is unclear what mechanisms put those with MCI at greater risk for developing AD or other dementias. But early identification and intervention can be of real benefit to the person affected, and participation by people with MCI in clinical trials can accelerate scientific learning.

The concept of MCI has come to represent a potential transitional state between normal aging and the earliest symptoms of AD. Fig. 16 provides a schematic of the continuum from healthy cognition to various levels of cognitive impairment and, finally, to increasing severity of dementia. Individuals with MCI experience increased forgetfulness, yet continue to function reasonably well overall. To the casual observer, an individual with MCI seems largely normal. However, the individual with MCI is often aware of a significant change in memory, and family members may observe changes in an individual's abilities. Although briefly forgetting an acquaintance's name or misplacing one's car keys is quite common, forgetting significant events such as doctor appointments and recent visits of relatives and friends is worrisome. When the information being forgotten is important to the individual and forgetfulness is becoming more frequent, thorough evaluation by a physician is appropriate.

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• Fig. 16. 

  Healthy cognition–to–dementia continuum.

7.1. Assessing memory loss 

Memory concerns are a common reason for physician visits. Typically, the physician will obtain a health history from the person and someone who knows the individual well. If a pattern of increasing forgetfulness of important information emerges, the physician will perform a mental-status examination as well as a general medical examination. If the physician is concerned about the degree of forgetfulness, additional testing might be undertaken, such as a neuropsychological examination, which is an inventory of a person's cognitive abilities (memory, language function, problem-solving, and visuospatial skills), to help determine if problems with memory and thinking go beyond what would be expected for the individual's age, and the extent to which other abilities beyond memory are impaired. Magnetic resonance imaging (MRI) scans of the brain and tests for treatable causes of cognitive impairment, such as a thyroid abnormality or a vitamin B₁₂ deficiency, are examples of the kinds of evaluations a physician might undertake to understand better the reason for the cognitive impairment. If forgetfulness is becoming increasingly severe but has developed gradually, and no other obvious explanations exist, e.g., medication side effects, coexisting illnesses, anxiety, or depression, the physician might conclude that a neurodegenerative process, such as MCI, is a possibility.

Individuals with MCI, however, are quite functional. They still drive, pay bills, and interact in society in a relatively normal way. Difficulties only become apparent when their memories are stressed or they are required to multitask. Individuals with this degree of memory impairment but intact cognitive functions, such as language skills, attention, executive function (the ability to plan, reason, solve problems, and focus on a task), and visuospatial skills (the ability to understand and use symbols and maps, for example, and the ability to translate visual signals into a correct impression of where objects are in space), are considered to have MCI. With the aging of society, MCI is becoming an increasingly important condition to recognize, because it can represent the earliest stages of AD, may be treatable, and is important for counseling, planning, and educational purposes.

7.2. Frequency 

Several recent epidemiologic studies assessed the frequency of MCI in the general population [106], [107], [108], [109]. The Mayo Clinic Study of Aging estimated the prevalence of MCI at between 13% and 16% of individuals aged 70 to 89 years [110]. International studies indicated a prevalence of between 10% and 20% in individuals aged 65 years and older [109], [111]. This is a significant proportion of the population, considering that baby boomers are now aging into the period of highest risk for cognitive disorders and dementia. As a result of the baby-boomer impact, the Alzheimer's Association estimates that if nothing is done to delay the onset or slow the progression of AD, this single entity will bankrupt the healthcare system as we know it.

7.3. Outcomes 

Although some individuals with MCI ultimately revert to normal cognitive status or do not go on to develop dementia, individuals with MCI will develop dementia (most commonly AD) at a higher rate than individuals without MCI. People whose MCI symptoms cause them enough concern to visit a physician appear to have a higher risk of developing dementia. As many as 15% of these individuals are estimated to progress from MCI to dementia each year. Based on this estimate, nearly half of all people who visit a physician regarding MCI symptoms will develop dementia in 3 or 4 years [112]. This estimate is somewhat higher than for individuals whose MCI is identified through assessments of community residents. When individuals are identified as having MCI through community sampling (and not as a result of visits to physicians because of cognitive concerns), their rate of progression is as high as 10% per year [107]. This may reflect that symptoms among those identified through community sampling are generally less severe than symptoms among those who seek medical care. Thus, if a person is already concerned about his or her memory, and meets the criteria for MCI, he or she is more likely to progress to dementia.

7.4. Predictors of progression from MCI to dementia 

Some individuals with MCI may develop dementia at a higher rate than other individuals with MCI, depending on certain characteristics. For example, if a person with MCI also has brain atrophy, as shown on an MRI scan (meaning that the brain regions involved with memory are smaller than those in individuals without memory impairments), the person is more likely to progress rapidly to dementia [113], [114], [115], [116], [117]. Other factors predict who might progress more rapidly to dementia, such as severity of memory impairment, a certain pattern of glucose metabolism in the brain that is characteristic of AD, and levels of particular proteins in cerebrospinal fluid that are consistent with AD [118], [119].

Biomarkers such as these are an area of active investigation by researchers. Clinical trials to investigate new therapeutic agents for AD are increasingly incorporating imaging techniques as well as biomarkers. Ultimately, these studies may provide clearer answers about which individuals with MCI are more likely to develop AD, and when it is likely to happen. In addition, these individuals will be very important to identify, because they possess the characteristics of early AD and may be the best candidates for inclusion in clinical trials for the sake of understanding how to prevent AD.

One large study of this nature, cosponsored by the Alzheimer's Association, is the AD Neuroimaging Initiative. It involves 800 individuals: 200 who are cognitively normal, 400 with MCI, and 200 with mild AD. All participants undergo a variety of brain-imaging techniques, such as MRI scans or positron emission tomography (PET) scans, to measure glucose metabolism in the brain. A subset also receives PET scans of the brain to identify β-amyloid, a protein that is a hallmark of AD [120]. About 50% of participants undergo lumbar punctures, which enable the measurement of cerebrospinal-fluid biomarkers. These biomarkers are being assessed to determine their utility in predicting who is more likely to progress to AD in the near future [120].

According to most investigators, the earlier that interventions occur in the AD process, the greater the chances of delaying or stopping additional damage to the brain. Extensive research efforts are under way to detect AD at its earliest stage. Ideally, physicians would intervene even before the development of overt symptoms.

7.5. Treatment 

No drugs have been approved by the U.S. Food and Drug Administration for the treatment of MCI. Several large, international clinical trials of drug interventions for MCI were completed. Unfortunately, virtually none of these trials showed that the intervention slowed the rate of progression from MCI to AD [121], [122], [123]. One clinical trial, cosponsored by the National Institute on Aging, Pfizer, Inc., and Eisai, Inc., documented a reduced risk of progression from MCI to AD for the first 12 months of their trial for individuals who had been treated with donepezil. A subset of subjects in the study with the APOE ɛ4 gene who were treated with donepezil had a reduced risk of developing AD for the first 24 months. However, the study lasted 36 months, and by that time, neither of the interventions (donepezil or high-dose vitamin E) demonstrated a lasting effect. Nonetheless, this trial was the first to indicate that an intervention could reduce the risk of developing AD in the short term, and suggested that patients with MCI might be important to study in the search for therapies. Presumably, the earlier that people at risk for developing AD are identified, the earlier that interventions can occur and hopefully prevent continuing damage to the brain.

7.6. The future 

The field of AD research is evolving rapidly. We are learning a great deal about the early symptoms of individuals who will go on to develop AD. It is important not to ignore these early warning features because, as previously discussed, the earlier we intervene, the better. At present, this “intervention” might include education and knowledge about the course of the disease. With more research, recommendations may include information about lifestyle and even pharmacological interventions. Although not all individuals with MCI develop AD, for those who do, MCI represents an earlier stage in AD symptoms, and is receiving increased attention by both researchers and physicians. Memory impairment is a common complaint among older patients, and much has been learned about which types of memory complaints may increase AD risk. Studying individuals with MCI helps identify those individuals at higher risk for developing AD [124], [125], [126]. At the same time, not all concerns about memory are problematic. With aging, minor forgetfulness does occur, and should not be interpreted to mean that AD is inevitable.

More information from longitudinal studies of aging and dementia will help researchers further characterize the early features of AD. Neuroimaging techniques and biomarker studies will help identify the severity of disease in these individuals with early signs of AD. If interventions are successful in individuals showing early symptoms of MCI, they may also be helpful for individuals who have yet to develop symptoms but are considered to be at high risk of developing AD, based on neuroimaging and biomarker studies. Those individuals may be candidates for intervention even before the development of symptoms. This would represent the attainment of the ultimate goal: the prevention of AD.

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Appendix: End notes 

^A1Number of Americans aged 65 years and older with AD: Herbert et al. computed the 5 million number in early 2007, at the request of the Alzheimer's Association. This number is based on a linear extrapolation of their previously published prevalence estimates for 2000 (4.5 million) and 2010 (5.1 million). See Hebert LE, Scherr PA, Bienias JL, Bennett DA, Evans DA: “AD in the U.S. Population: Prevalence Estimates Using the 2000 Census,” Archives of Neurology 2003;60:1119–22. These prevalence numbers are based on incidence data from the Chicago Health and Aging Project (CHAP).

^A2Proportion of Americans with AD: thirteen percent was calculated by dividing the number of people aged 65 years and older with AD (5.1 million) by the U.S. population aged 65 years and older in 2008 (using the latest data from the U.S. Census Bureau, i.e., 38 million) = 13%. Thirteen percent is the same as 1 in 8.

^A3Number of seconds for development of a new case of AD: seventy seconds was calculated by dividing the number of seconds in a year (31,536,000) by the number of new cases in a year. Hebert et al. (2001) estimated 411,000 new cases in 2000, and 454,000 new cases in 2010. See Hebert LE, Beckett LA, Scherr PA, Evans DA: “Annual Incidence of AD Disease in the United States Projected to the Years 2000 Through 2050,” Alzheimer's Disease and Associated Disorders 2001;15:169–73. The Alzheimer's Association calculated that the incidence of new cases in 2009 would be 449,700 by multiplying the 10-year change from 411,000 to 454,000 (43,000) by 0.9 (for the number of years from 2000 to 2009, divided by the number of years from 2000 to 2010), adding that result (38,700) to the estimate by Hebert et al. (2001) for 2000 (411,000) = 449,700. Then, 31,536,000 divided by 449,700 = 70.1 seconds, rounded to 70 seconds. Using the same method of calculation for 2050, 31,536,000 divided by 959,000 (from Hebert et al., 2001) = 32.8 seconds, rounded to 33 seconds.

^A4The Aging, Demographics, and Memory Study: ADAMS provides estimates of the number of Americans aged 71 years and older who had AD and other dementias in 2002. See Plassman BL, Langa KM, Fisher GG, Heeringa SG, Weir DR, Ofstedal MB, et al.: “Prevalence of Dementia in the United States: The Aging, Demographics, and Memory Study,” Neuroepidemiology 2007;29:125–32. Updated to 2008, the ADAMS data presently indicate about 3.7 million Americans aged 71 years and older who have dementia, including about 2.6 million people in that age group who have AD. These figures do not include Americans under age 71 years who have AD and other dementias, i.e., an estimated 1 million people in 2008. Analysis of the reasons for the difference in prevalence estimates from CHAP (Hebert et al., 2003) and ADAMS is ongoing. Conclusions based on this analysis, which are not available as of the writing of this Alzheimer's Association report, will help clarify the difference in estimates from the two studies.

^A5Criteria for identifying subjects with AD and other dementias in the Framingham Study: standard diagnostic criteria (Diagnostic and Statistical Manual of Mental Disorders IV criteria) were used to diagnose dementia in the Framingham Study. In addition, subjects had to have at least “moderate” dementia according to the Framingham criteria, which is equivalent to a score of 1 or more on the Clinical Dementia Rating Scale (CDR), and they had to have symptoms for 6 months or more. Standard diagnostic criteria (the National Institute of Neurological and Communicative Disorders and Stroke–Alzheimer's Disease and Related Disorders Association criteria) were used to diagnose AD. The examination for dementia and AD is described in detail by Seshadri S, Wolf PA, Beiser A, Au R, McNulty K, White R, et al.: “Lifetime Risk of Dementia and AD: The Impact of Mortality on Risk Estimates in the Framingham Study,” Neurology 1997;49:1498–504.

^A6Number of baby boomers who will develop AD and other dementias: the numbers for remaining lifetime risk of AD and other dementias for baby boomers were developed by the Alzheimer's Association by applying the data provided to the Association on remaining lifetime risk by Alexa Beiser, PhD, Sudha Seshadri, MD, Rhoda Au, PhD, and Philip A. Wolf, MD (from the Departments of Neurology and Biostatistics, Boston University Schools of Medicine and Public Health), to U.S. Census data for the number of women and men aged 43 to 61 years in November 2007, used here to estimate the number of women and men who will be aged 44 to 62 years.

^A7State-by-state prevalence of AD: these state-by-state prevalence numbers are based on incidence data from CHAP, projected to each state's population, with adjustments for state-specific gender, years of education, race, and mortality. See Hebert LE, Scherr PA, Bienias JL, Bennett DA, Evans DA: “State-Specific Projections Through 2025 of Alzheimer's Disease Prevalence,” Neurology 2004;62:1645. The numbers in Table 2 are found in online material related to that article at www.neurology.org.

^A8Number of family and other unpaid caregivers of people with AD and other dementias: to calculate this number, the Alzheimer's Association began with data from the BRFSS. In 2000, the BRFSS survey asked respondents aged 18 years and older whether they had provided any regular care or assistance during the past month to a family member or friend aged 60 years or older who had a long-term illness or disability. To determine the number of family and other unpaid caregivers by state, we applied the proportion of caregivers for each state from the 2000 BRFSS (as reported in McKune SL, Andresen EM, Zhang J, Neugaard B: Caregiving: A National Profile and Assessment of Caregiver Services and Needs, Gainesville, FL: University of Florida and Rosalynn Carter Institute, 2006) to the number of people aged 18 years and older in each state from the U.S. Census Bureau report for July 2008, accessed at http://www.census.gov/popest/national/files/NST-EST2008-alldata.csv on December 27, 2008. To calculate the proportion of family and other unpaid caregivers providing care for a person with AD or another dementia, we used data from a national telephone survey, conducted in 2003, for the National Alliance for Caregiving (NAC) and AARP (see NAC and AARP, Caregiving in the U.S., Bethesda, MD: North Alliance for Caregiving, 2004). This survey asked respondents aged 18 years and older whether they were providing unpaid care for a relative or friend aged 18 years 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. In response, 23% of caregivers said that: 1) AD or another dementia was the main problem of the person for whom they provided care; or 2) the person had AD or other mental confusion in addition to his or her main problem. The figure of 23% pertains to caregivers of people aged 18 years and older, but almost all people with AD and other dementias are at least 50 years old, and we needed a percentage figure to use with the BRFSS state numbers for caregivers of people aged 60 years and older. To estimate that percentage, we divided the proportion of caregivers of people with AD and other dementias from the NAC and AARP survey (23%) by the proportion of caregivers of people aged 50 years and older with any health problem from the NAC and AARP survey (79%), and estimated that 29% of caregivers aged 18 years and older are taking care of a person aged 50 years or older with AD or another dementia. We applied the figure of 29% to the total number of caregivers of people aged 60 years and older in each state.

^A9Number of hours of unpaid care: to calculate this number, the Alzheimer's Association used data from a follow-up analysis based on the 2003 NAC and AARP survey (see Alzheimer's Association and NAC, Families Care: AD Caregiving in the United States, 2004, accessible at www.alz.org). This analysis showed that 23% of caregivers of people with AD and other dementias provided 40 or more hours of care a week; 8% provided an average of 30 hours per week; 21% provided an average of 15 hours a week; 47% provided an average of 4 hours a week; and 1% did not report their hours of care. Based on these proportions, the average hours of care provided per week is 16.6, or 863 hours per year. We multiplied the number of family and other unpaid caregivers (9,856,945) by the average hours of care per year (863) = 8,506,543,535 hours, rounded to 8.5 billion hours.

^A10Value of unpaid caregiving: to calculate this number, the Alzheimer's Association used the method of Arno et al. (see Arno PS, Levine C, Memmott MM: “The Economic Value of Informal Caregiving,” Health Affairs 1999;18:182–8). This method uses the average of the minimum wage ($5.85 in July 2008) and the mean wage of home health aides ($16.35 in July 2008). See U.S. Department of Labor, Bureau of Labor Statistics: “Employment, Hours and Earnings from Current Employment Statistics Survey,” Series 10-CEU 6562160008, Home Health Care Services (North American Industry Classification System code 6216), Average Hourly Earnings, July 2008, accessed at ftp://ftp.bls.gov/pub/suppl/empsit.edseeb16.txt, November 4, 2008. We multiplied the total number of hours of unpaid care (8,506,543,535 hours) by $11.10 = $94,422,633,239, rounded to $94 billion.

^A11Medicare Current Beneficiary Survey Report: these data come from an analysis of findings from the 2004 Medicare Current Beneficiary Survey (MCBS). The analysis was conducted for the Alzheimer's Association by Julie Bynum, MD, MPH, Dartmouth Institute for Health Policy and Clinical Care, Center for Health Policy Research. The MCBS is a continuous survey of a nationally representative sample of about 16,000 Medicare beneficiaries who are linked to Medicare Part B claims. The survey is supported by the U.S. Centers for Medicare and Medicaid Services. 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 unable to respond for himself or herself. For survey participants who are living in a nursing home or other residential care facility, such as an assisted living residence, retirement home, or long-term care unit in a hospital or mental-health facility, MCBS interviews are conducted with a nurse who is familiar with the survey participant and his or her medical records. Data from the MCBS analysis in the 2009 Alzheimer's Disease Facts and Figures pertain only to Medicare beneficiaries aged 65 years and older. For this MCBS analysis, people with dementia are defined as:

^A12Medicare is a medical insurance program available to all Americans aged 65 years and older, and to a limited number of younger individuals who meet the requirements for Social Security Disability Insurance. In 2007, 95% of people aged 65 years and older had Medicare (see U.S. Department of Health and Human Services, Health Care Financing Review: Medicare and Medicaid Statistical Supplement, Brief Summaries of Medicare and Medicaid, 2008). Original, fee-for-service Medicare covers hospital care; physician services; home health care; laboratory and imaging tests; physical, occupational, and speech therapies; hospice; and other medical services. Medicare beneficiaries can choose to enroll in a Medicare health maintenance organization as an alternative to original fee-for-service Medicare. Medicare does not cover long-term care in a nursing home, but it does cover short stays in skilled nursing facilities when the stay follows within 30 days of a hospitalization of 3 or more days for an acute illness such as a heart attack or broken hip. Medicare beneficiaries pay premiums for coverage, and generally pay deductibles and copayments for particular services. Medicare premiums, deductibles, and copayments do not cover the full cost of services to beneficiaries, and the program is also tax-supported.

^A13Medicaid is a publicly funded health-services program for low-income Americans. It is jointly funded by the federal government and the states according to a complex formula. In addition to basic health services, Medicaid covers nursing-home care and various home-based and community-based long-term care services for individuals who meet program requirements for level of care, income, and assets. States have considerable flexibility about which services are covered in their Medicaid programs, and covered services vary greatly in different states.

^A14Cost to businesses of AD: this number comes from an analysis by Koppel R: Alzheimer's Disease: The Costs to U.S. Businesses in 2002 (Washington, DC: Alzheimer's Association; 2002), accessible at www.alz.org, search “Alzheimer's Disease: The Costs to U.S. Businesses in 2002.” The total cost to businesses from this analysis includes an additional $24.6 billion for the costs to businesses of healthcare and long-term care services for people with AD and other dementias. The $24.6 billion consists primarily of government taxes that are used for publicly funded services. That amount is not included here because, to a great extent, it overlaps with the $91 billion for Medicare and $21 billion for Medicaid.

^A15National 20% Sample Medicare Fee-for-Service Beneficiaries Report: these data come from an analysis of Medicare claims data for 2005 and 2006. The analysis was conducted for the Alzheimer's Association by Julie Bynum, MD, MPH, Dartmouth Institute for Health Policy and Clinical Care, Center for Health Policy. The data come from Medpar files (hospital and SNF services), outpatient files (outpatient hospital services), carrier files (physician and supplier services), hospice files (hospice services), durable medical equipment files, and home health files (home health services). Data from the analysis in 2009 Alzheimer's Disease Facts and Figures pertain only to Medicare beneficiaries aged 65 years and older. For this analysis, people with dementia are defined as those who have at least one claim with a diagnostic code for AD or other dementias in Medpar Medicare Part B, hospice, or home health files in 2005. The diagnostic codes used to identify survey participants with AD and 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 290.11. People with other chronic conditions (identified using International Classification of Diseases, 9th Revision codes from the Clinical Classification Software produced by Agency for Healthcare Research and quality; U.S. Government Printing Office, Washington, D.C.) are defined as those who had at least one Medicare Part A claim or two Part B claims occurring at least 7 days apart, with a diagnostic code for the condition. Medicare beneficiaries with AD, other dementias, and other chronic conditions were identified in 2005 Medicare claims, and outcomes (use and costs of services) were taken from 2006 Medicare claims. This prospective method decreases the influence of people with a new diagnosis, which is usually associated with higher use and costs of services, compared with ongoing management of the condition.

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