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dAbout this report 2021 Alzheimer™s Disease Facts and Figures is a statistical resource for U.S. data related to Alzheimer™s disease, the most common cause of dementia. Background and context for interpretation of the data are contained in the Overview. Additional sections address prevalence, mortality and morbidity, caregiving, and use and costs of health care and services. A Special Report examines race, ethnicity and Alzheimer’s in America .Alzheimer™s Association. 2021 Alzheimer™s Disease Facts and Figures . Alzheimers Dement 2021;17(3).
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12021 Alzheimer™s Disease Facts and Figures Speci˜c information in this year™s Alzheimer™s Disease Facts and Figures includes: Ł Brain changes that occur with Alzheimer™s disease (page 5). Ł Risk factors for Alzheimer™s dementia (page 13). Ł Number of Americans with Alzheimer™s dementia nationally (page 19) and for each state (page 22). Ł Lifetime risk for developing Alzheimer™s dementia (page 24). Ł Proportion of women and men with Alzheimer™s and other dementias (page 24). Ł Number of deaths due to Alzheimer™s disease nationally (page 29) and for each state (page 32), and death rates by age (page 33). Ł The effect of COVID-19 on deaths from Alzheimer™s disease (page 30). Ł Number of family caregivers, hours of care provided, and economic value of unpaid care nationally (page 36) and for each state (page 40). Ł The health and economic impact of caregiving on caregivers (page 41). Ł The impact of COVID-19 on dementia caregiving (page 49). Ł National cost of care for individuals with Alzheimer™s or other dementias, including costs paid by Medicare and Medicaid and costs paid out of pocket (page 52). Ł Medicare payments for people with dementia compared with people without dementia (page 59). Ł Types of discrimination experienced by Alzheimer’s and dementia caregivers (page 74). Ł Racial and ethnic attitudes about medical research and clinical trial participation (page 79). The Appendices detail sources and methods used to derive statistics in this report. When possible, specific information about Alzheimer™s disease is provided; in other cases, the reference may be a more general one of fiAlzheimer™s or other dementias.fl
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2Contents Overview Brain Changes of Alzheimer™s Disease 5Mixed Dementia 7Alzheimer™s Disease Continuum 8Diagnosis of Dementia Due to Alzheimer™s Disease 11Treatment of Alzheimer™s Dementia 11 Active Management of Alzheimer™s Dementia 12Risk Factors for Alzheimer™s Dementia 13 Looking to the Future 17Prevalence Prevalence of Alzheimer™s and Other Dementias in the United States 19Estimates of the Number of People with Alzheimer™s Dementia by State 21Incidence of Alzheimer™s Dementia 23Lifetime Risk of Alzheimer™s Dementia 24 Di˜erences Between Women and Men in the Prevalence and Risk of Alzheimer™s and Other Dementias 24Racial and Ethnic Di˜erences in the Prevalence of Alzheimer™s and Other Dementias 25Trends in the Prevalence and Incidence of Alzheimer™s Dementia Over Time 26Mortality and Morbidity Deaths from Alzheimer™s Disease 29The E˜ect of the COVID-19 Pandemic on Deaths from Alzheimer’s Disease 30Public Health Impact of Deaths from Alzheimer™s Disease 31State-by-State Deaths from Alzheimer™s 31Alzheimer™s Death Rates 34Duration of Illness from Diagnosis to Death 34Burden of Alzheimer™s Disease 34
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3Contents Caregiving Unpaid Caregivers 36 Who Are the Caregivers? 37 Caregiving and Women 38 Race, Ethnicity and Dementia Caregiving 38 Caregiving Tasks 39 Duration of Caregiving 41 Hours of Unpaid Care and Economic Value of Caregiving 41 Health and Economic Impacts of Alzheimer™s Caregiving 41 Interventions Designed to Assist Caregivers 47Paid Caregivers 48 Direct-Care Workers for People with Alzheimer™s or Other Dementias 48 Shortage of Geriatric Health Care Professionals 48 Enhancing Health Care for Family Caregivers 48Trends in Dementia Caregiving 49COVID-19 and Dementia Caregiving 49 Use and Costs of Health Care, Long-Term Care and Hospice Total Cost of Health Care and Long-Term Care 52Use and Costs of Health Care Services 53 Use and Costs of Long-Term Care Services 56Medicare Does Not Cover Long- Term Care in a Nursing Home 61Use and Costs of Health Care and Long-Term Care Services by Race/Ethnicity 66Avoidable Use of Health Care and Long-Term Care Services 66Projections for the Future 69Special Report Š Race, Ethnicity and Alzheimer’s in America Disparities Still Impacting Health and Health Care 71Pandemic Sparks New Discussions About Disparities 71Racial and Ethnic Disparities Exist in Alzheimer™s and Dementia Care 72The State of Disparity in Alzheimer™s and Dementia Health Care: Adult and Caregiver Surveys 72Bridging Racial and Ethnic Barriers in Alzheimer™s and Dementia Care: A Path Forward 78Conclusion 82 Appendices End Notes 83References 85
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6Common Causes of Dementia and Associated Characteristics Alzheimer™s disease Alzheimer’s disease is the most common cause of dementia, accounting for an estimated 60% to 80% of cases. Recent large autopsy studies show that more than half of individuals with Alzheimer’s dementia have Alzheimer’s disease brain changes (pathology) as well as the brain changes of one or more other causes of dementia, such as cerebrovascular disease or Lewy body disease. 11-12 This is called mixed pathologies, and if recognized during life is called mixed dementia. Difficulty remembering recent conversations, names or events is often an early clinical symptom; apathy and depression are also often early symptoms. Later symptoms include impaired communication, disorientation, confusion, poor judgment, behavioral changes and, ultimately, difficulty speaking, swallowing and walking. The hallmark pathologies of Alzheimer™s disease are the accumulation of the protein fragment beta-amyloid (plaques) outside neurons in the brain and twisted strands of the protein tau (tangles) inside neurons. These changes are accompanied by the death of neurons and damage to brain tissue. Alzheimer’s is a slowly progressive brain disease that begins many years before symptoms emerge. Cerebrovascular disease Cerebrovascular disease refers to the process by which blood vessels in the brain are damaged and/or brain tissue is injured from not receiving enough blood, oxygen or nutrients. People with dementia whose brains show evidence of cerebrovascular disease are said to have vascular dementia. About 5% to 10% of individuals with dementia show evidence of vascular dementia alone. 11-12 However, it is more common as a mixed pathology, with most people living with dementia showing the brain changes of cerebrovascular disease and Alzheimer’s disease. 11-12 Impaired judgment or impaired ability to make decisions, plan or organize may be the initial symptom, but memory may also be affected, especially when the brain changes of other causes of dementia are present. In addition to changes in cognitive function, people with vascular dementia commonly have difficulty with motor function, especially slow gait and poor balance. Vascular dementia occurs most commonly from blood vessel blockage, such as that which occurs with stroke, or damage leading to areas of dead tissue or bleeding in the brain. The location, number and size of the brain injuries determine whether dementia will result and how the individual™s thinking and physical functioning will be affected. Lewy body disease Lewy bodies are abnormal aggregations (or clumps) of the protein alpha-synuclein in neurons. When they develop in a part of the brain called the cortex, dementia can result. This is called dementia with Lewy bodies or DLB. People with DLB have some of the symptoms common in Alzheimer™s, but are more likely to have initial or early symptoms of sleep disturbances, well-formed visual hallucinations and visuospatial impairment. These symptoms may occur in the absence of significant memory impairment but memory loss often occurs, especially when the brain changes of other causes of dementia are present. About 5% of individuals with dementia show evidence of DLB alone, but most people with DLB also have Alzheimer’s disease pathology. Fronto- temporal lobar degeneration (FTLD) FTLD includes dementias such as behavioral-variant FTLD, primary progressive aphasia, Pick™s disease, corticobasal degeneration and progressive supranuclear palsy. Typical early symptoms include marked changes in personality and behavior and/or difficulty with producing or comprehending language. Unlike Alzheimer™s, memory is typically spared in the early stages of disease. Nerve cells in the front (frontal lobe) and side regions (temporal lobes) of the brain are especially affected, and these regions become markedly atrophied (shrunken). In addition, the upper layers of the cortex typically become soft and spongy and have abnormal protein inclusions (usually tau protein or the transactive response DNA-binding protein, TDP-43). The symptoms of FTLD may occur in those age 65 years and older, similar to Alzheimer™s, but most people with FTLD develop symptoms at a younger age. About 60% of people with FTLD are ages 45 to 60. 13 Scientists think that FTLD is the most common cause of dementia in people younger than 60. 13 In a systematic review, FTLD accounted for about 3% of dementia cases in studies that included people 65 and older and about 10% of dementia cases in studies restricted to those younger than 65. 14Cause Characteristics TABLE 1
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7Common Causes of Dementia and Associated Characteristics Parkinson™s disease (PD) Problems with movement (slowness, rigidity, tremor and changes in gait) are common symptoms of PD. Cognitive symptoms develop either just before movement symptoms or later in the disease. In PD, clumps of the protein alpha-synuclein appear in an area deep in the brain called the substantia nigra. These clumps are thought to cause degeneration of the nerve cells that produce dopamine. 15As PD progresses, alpha-synuclein can also accumulate in the cortex of the brain (similar to dementia with Lewy bodies). Dementia may result. Hippocampal sclerosis (HS) HS is the hardening of tissue in the hippocampus of the brain. The hippocampus plays a key role in forming memories. The most pronounced symptom of HS is memory loss, and individuals may be misdiagnosed as having Alzheimer’s disease. HS brain changes are often accompanied by accumulations of a misfolded form of a protein called TDP-43. HS is a common cause of dementia in the “oldest-old,” individuals age 85 or older. Mixed pathologies When an individual shows the brain changes of more than one cause of dementia, mixed pathologies are considered the cause. When these pathologies result in dementia symptoms during life, the person is said to have mixed dementia. Studies suggest that mixed dementia is more common than previously recognized, with more than 50% of people with dementia who were studied at Alzheimer’s Disease Research Centers having pathologic evidence of more than one cause of dementia. 12 In community-based studies, the percentage of mixed dementia cases is considerably higher. 11 The likelihood of having mixed dementia increases with age and is highest in people age 85 or older. 16-17 Overview these genetic mutations usually develop symptoms at the same or nearly the same age as their parent with Alzheimer™s). Glucose metabolism began to decrease 18 years before expected symptom onset, and brain atrophy began 13 years before expected symptom onset. Another study 1 of people with DIAD found abnormal levels of the neurofilament light chain protein, a biomarker of neurodegeneration, 22 years before symptoms were expected to develop. A third study 2 found that levels of two types of tau protein begin to increase when beta-amyloid starts clumping together as amyloid plaques. Levels of these types of tau increase as early as two decades before the characteristic tau tangles of Alzheimer™s begin to appear. Mixed Dementia Many people with dementia have brain changes associated with more than one cause of dementia. 11,18-23 This is called mixed dementia. Some studies 11-12 report that the majority of people with the brain changes of Alzheimer™s also have the brain changes of a second cause of dementia on autopsy. One autopsy study showed that of 447 older people who were believed to have Alzheimer™s dementia when they died, only 3% had the brain changes of Alzheimer™s disease alone, 15% had the brain changes of a different cause of dementia, and 82% had the brain changes of Alzheimer™s plus at least one other cause of dementia. 11 Studies suggest that mixed dementia is the norm, and the number of distinct combinations of mixed dementia is extensive. 24-25 Mixed dementia is especially common at advanced ages. 18,26 For example, the oldest-old, those age 85 or older, are more likely to have evidence of two or more causes of dementia than those younger than 85. 16-17 Having Alzheimer™s brain changes plus another type of brain change makes it more likely that a person will show dementia symptoms in their lifetime 11,18 compared with someone with Alzheimer™s brain changes alone. It may also account for the wide variety of memory and thinking problems experienced by people living with dementia. Cause Characteristics (cont .) TABLE 1
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8While we know the continuum starts with preclinical Alzheimer™s and ends with severe Alzheimer™s dementia, how long individuals spend in each part of the continuum varies. The length of each phase of the continuum is influenced by age, genetics, biological sex and other factors. 31Preclinical Alzheimer™s Disease In this phase, individuals have measurable brain changes that indicate the earliest signs of Alzheimer™s disease (biomarkers), but they have not yet developed symptoms such as memory loss. Examples of Alzheimer’s biomarkers include abnormal levels of beta-amyloid as shown on positron emission tomography (PET) scans 32 and in analysis of cerebrospinal fluid (CSF), and decreased metabolism of glucose as shown on PET scans. When the early changes of Alzheimer™s occur, the brain compensates for them, enabling individuals to continue to function normally. While research settings have the tools and expertise to identify some of the early brain changes of Alzheimer™s, additional research is needed to fine-tune the tools™ accuracy before they become available for widespread use in hospitals, doctors™ offices and other clinical settings. It is important to note that not all individuals with evidence of Alzheimer™s-related brain changes go on to develop symptoms of MCI or dementia due to Alzheimer™s. 33-34 For example, some individuals have beta-amyloid plaques at death but did not have memory or thinking problems in life. MCI due to Alzheimer™s Disease People with MCI due to Alzheimer™s disease have biomarker evidence of Alzheimer™s brain changes plus subtle problems with memory and thinking. These cognitive problems may be noticeable to the individual, Symptoms interfere with most everyday activities Symptoms interfere with many everyday activities Symptoms interfere with some everyday activities Very mild symptoms that do not interfere with everyday activities No symptoms Preclinical AD Mild Cognitive Impairment due to AD Mild Moderate Severe Dementia due to ADDementia due to AD Dementia due to AD *Although these arrows are of equal size, the components of the AD continuum are not equal in duration. Alzheimer’s Disease (AD) Continuum* FIGURE 1Alzheimer™s Disease Continuum The progression of Alzheimer™s disease from brain changes that are unnoticeable to the person affected to brain changes that cause problems with memory and eventually physical disability is called the Alzheimer™s disease continuum. On this continuum, there are three broad phases: preclinical Alzheimer™s disease, mild cognitive impairment (MCI) due to Alzheimer™s disease and dementia due to Alzheimer™s disease (see Figure 1). 27-30 The Alzheimer™s dementia phase is further broken down into the stages of mild, moderate and severe, which reflect the degree to which symptoms interfere with one™s ability to carry out everyday activities. Alzheimer’s Begins Before Dementia In the past, Alzheimer™s disease was often used to describe the dementia phase of the disease. Today we know that dementia is only one part of the disease. It is preceded by mild cognitive impairment (MCI), a period when individuals have subtle cognitive changes that do not interfere with everyday activities. When biomarker tests show that individuals with MCI have the brain changes of Alzheimer™s disease, they are said to have MCI due to Alzheimer™s disease , another part of the Alzheimer™s disease continuum. MCI is a key area of interest to researchers involved in drug development. Because individuals with MCI are still able to function independently, a treatment that prevents MCI from progressing to dementia would have a significant impact on quality of life, caregiver burden, and use and cost of care. Alzheimer™s Association. 2021 Alzheimer™s Disease Facts and Figures . Alzheimers Dement 2021;17(3).
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9Overview family members and friends, but not to others, and they do not interfere with individuals™ ability to carry out everyday activities. The mild changes in thinking abilities occur when the brain can no longer compensate for the damage and death of nerve cells caused by Alzheimer™s disease. Among those with MCI, about 15% develop dementia after two years. 35 About one-third (32%) of individuals with MCI develop Alzheimer™s dementia within five years™ follow-up. 36 It™s important to note that some individuals are diagnosed as having MCI several years after cognitive decline began, and these individuals are likely to develop dementia sooner than those whose cognitive decline is more recent. It™s also important to note that some individuals with MCI revert to normal cognition or do not have additional cognitive decline. In other cases, such as when a medication inadvertently causes cognitive changes, MCI is mistakenly diagnosed and cognitive changes can be reversed. Identifying which individuals with MCI are more likely to develop dementia is a major goal of current research. Dementia due to Alzheimer™s Disease Dementia due to Alzheimer™s disease, or Alzheimer’s dementia, is characterized by noticeable memory, thinking or behavioral symptoms that impair a person™s ability to function in daily life, combined with biomarker evidence of Alzheimer™s-related brain changes. As Alzheimer’s progresses, individuals commonly experience multiple types of symptoms that change with time. These symptoms reflect the degree of damage to nerve cells in different parts of the brain. The pace at which symptoms of dementia advance from mild to moderate to severe differs from person to person. Mild Alzheimer™s Dementia In the mild stage of Alzheimer™s dementia, most people are able to function independently in many areas but are likely to require assistance with some activities to maximize independence and remain safe. They may still be able to drive, work and participate in favorite activities. Moderate Alzheimer™s Dementia In the moderate stage of Alzheimer™s dementia, which is often the longest stage, individuals may have difficulties communicating and performing routine tasks, including activities of daily living (such as bathing and dressing); become incontinent at times; and start having personality and behavioral changes, including suspiciousness and agitation. Severe Alzheimer™s Dementia In the severe stage of Alzheimer™s dementia, individuals need help with activities of daily living and are likely to require around-the-clock care. The effects of Alzheimer’s disease on individuals™ physical health become especially apparent in this stage. Because of damage to areas of the brain involved in movement, individuals become bed-bound. Being bed-bound makes them vulnerable to conditions including blood clots, skin infections and sepsis, which triggers body-wide inflammation that can result in organ failure. Damage to areas of the brain that control swallowing makes it difficult to eat and drink. This can result in individuals swallowing food into the trachea (windpipe) instead of the esophagus (food pipe). Because of this, food particles may be deposited in the lungs and cause lung infection. This type of infection is called aspiration pneumonia, and it is a contributing cause of death among many individuals with Alzheimer™s (see Mortality and Morbidity section, page 28). When Dementia-Like Symptoms Are Not Dementia It is important to note that some individuals have dementia-like symptoms without the progressive brain changes of Alzheimer™s or other degenerative brain diseases. Causes of dementia-like symptoms include depression, untreated sleep apnea, delirium, side effects of medications, Lyme disease, thyroid problems, certain vitamin deficiencies and excessive alcohol consumption. Unlike Alzheimer™s and other dementias, these conditions often may be reversed with treatment. Consulting a medical professional to determine the cause of symptoms is critical to one™s physical and emotional well-being. Normal Age-Related Cognitive Changes or Symptoms of Dementia? The differences between normal age-related cognitive changes and the cognitive changes of Alzheimer™s dementia can be subtle (see Table 2, page 10). People experiencing cognitive changes should seek medical help to determine if the changes are normal for one™s age, reversible or a symptom of Alzheimer™s or another dementia. The Medicare Annual Wellness Visit, available to all Medicare enrollees each year at no cost, includes a cognitive evaluation and is an opportune time for individuals age 65 or older to discuss cognitive changes with their physician.
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