2015 Alzheimer’s Disease Facts and Figures Includes a Special Report on Disclosing a Diagnosis of Alzheimer’s Disease Alzheimer’s Disease is the sixth-leading cause of death in the United States. more than 15 million Americans provide unpaid care for individuals with Alzheimer’s or another dementia. Payments for health care are estimated to be $226 billion in 2015. fewer than 50 percent of people WITH ALZHEIMER’S disease report being told of their diagnosis. About this report 2015 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, as well as other dementias. Background and context for interpretation of the data are contained in the Overview. This information includes descriptions of the various causes of dementia and a summary of current knowledge about Alzheimer’s disease. Additional sections address prevalence, mortality and morbidity, caregiving and use and costs of health care. The Special Report addresses issues surrounding the disclosure of an Alzheimer’s diagnosis to individuals with the disease. Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Specific information in this year’s Alzheimer’s Disease Facts and Figures includes: • Proposed criteria and guidelines for diagnosing Alzheimer’s disease from the National Institute on Aging and the Alzheimer’s Association. • Overall number of Americans with Alzheimer’s disease nationally and for each state. • Proportion of women and men with Alzheimer’s and other dementias. • Estimates of lifetime risk for developing Alzheimer’s disease. • Number of deaths due to Alzheimer’s disease nationally and for each state, and death rates by age. • Number of family caregivers, hours of care provided, economic value of unpaid care nationally and for each state, and the impact of caregiving on caregivers. • Use and costs of health care, long-term care and hospice care for people with Alzheimer’s disease and other dementias. • Challenges surrounding the disclosure of an Alzheimer’s disease diagnosis to individuals with the disease. The Appendices detail sources and methods used to derive data in this report. This report frequently cites statistics that apply to all individuals with dementia. When possible, specific information about individuals with Alzheimer’s disease is provided; in other cases, the reference may be a more general one of individuals with “Alzheimer’s disease and other dementias.” 2015 Alzheimer’s Disease Facts and Figures 1 Contents Overview of Alzheimer’s Disease Dementia 5 Alzheimer’s Disease 8 Symptoms 8 Changes in the Brain That Are Associated with Alzheimer’s Disease 8 Genetic Mutations That Cause Alzheimer’s Disease 9 Risk Factors for Alzheimer’s Disease 9 Diagnosis 11 Treatment of Alzheimer’s Disease 12 Living with Alzheimer’s Disease 12 A Modern Diagnosis of Alzheimer’s Disease: Proposed Criteria and Guidelines 13 Prevalence Prevalence of Alzheimer’s Disease and Other Dementias in the United States Estimates of the Number of People with Alzheimer’s Disease by State 16 18 Incidence of Alzheimer’s Disease 18 Lifetime Risk of Alzheimer’s Disease 21 Trends in the Prevalence and Incidence of Alzheimer’s Disease 21 Looking to the Future Growth of the Oldest-Old Population 22 23 Mortality and Morbidity Deaths from Alzheimer’s Disease 25 Public Health Impact of Deaths from Alzheimer’s Disease 26 State-by-State Deaths from Alzheimer’s Disease 26 Alzheimer’s Disease Death Rates 28 2 Duration of Illness from Diagnosis to Death 28 Burden of Alzheimer’s Disease 28 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Caregiving Unpaid Caregivers 31 Who Are the Caregivers? 31 Ethnic and Racial Diversity in Caregiving 31 Sandwich Generation Caregivers 32 Caregiving Tasks 32 Duration of Caregiving 34 Hours of Unpaid Care and Economic Value of Caregiving 35 Impact of Alzheimer’s Disease Caregiving 35 Interventions Designed to Assist Caregivers 40 Caregiver Interventions and Their Effects on Care Recipients 42 Paid Caregivers 42 Direct-Care Workers for People with Alzheimer’s Disease and Other Dementias 42 Shortage of Geriatric Health Care Professionals in the United States 43 Use and Costs of Health Care, Long-Term Care and Hospice Total Cost of Health Care, Long-Term Care and Hospice 45 Use and Costs of Health Care Services 47 Use and Costs of Long-Term Care Services 51 Use and Costs of Hospice Care 56 Projections for the Future 56 Special Report: disclosing A DIAGNOSIS OF ALZHEIMER’S DISEASE Historical Context 58 A Consensus for Disclosure 58 Are People Being Told They Have Alzheimer’s by Health Care Providers? 60 Reasons Cited for Not Disclosing a Diagnosis 64 Benefits of Disclosing a Diagnosis The Process of Disclosure Conclusion 65 66 67 Appendices End Notes 68 References 71 Contents 3 Overview of Alzheimer’s Disease Alzheimer’s disease is the most common cause of dementia. 4 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Alzheimer’s disease is a degenerative brain disease and the most common cause of dementia.1-2 Dementia is also caused by other diseases and conditions. It is characterized by a decline in memory, language, problem-solving and other cognitive skills that affects a person’s ability to perform everyday activities. This decline occurs because nerve cells (neurons) in parts of the brain involved in cognitive function have been damaged and no longer function normally. In Alzheimer’s disease, neuronal damage eventually affects parts of the brain that enable a person to carry out basic bodily functions such as walking and swallowing. People in the final stages of the disease are bed-bound and require around-the-clock care. Alzheimer’s disease is ultimately fatal. Dementia Physicians often refer to the Diagnostic and Statistical Manual of Mental Disorders (DSM) to guide them in determining if an individual has dementia and, if so, the condition causing dementia. The latest edition of the manual, DSM-5, classifies dementia as a neurocognitive disorder. 3 Dementia may be either a major or a mild neurocognitive disorder. To meet DSM-5 criteria for a major neurocognitive disorder, an individual must have evidence of significant cognitive decline, and the decline must interfere with independence in everyday activities (for example, assistance may be needed with complex activities such as paying bills or managing medications). To meet DSM-5 criteria for a mild neurocognitive disorder, an individual must have evidence of modest cognitive decline, but the decline does not interfere with everyday activities (individuals can still perform complex activities such as paying bills or managing medications, but the activities require greater mental effort). When an individual has these or other symptoms of dementia, a physician must conduct tests to identify the cause. Different causes of dementia are associated with distinct symptom patterns and brain abnormalities, as described in Table 1 (see pages 6-7). Increasing evidence from long-term observational and autopsy studies indicates that many people with dementia, especially those in the older age groups, have brain abnormalities associated with more than one cause of dementia.4-8 This is called mixed dementia. In some cases, individuals do not have dementia, but instead have a condition whose symptoms mimic those of dementia. Common causes of dementia-like symptoms are depression, delirium, side effects from medications, thyroid problems, certain vitamin deficiencies and excessive use of alcohol. Unlike dementia, these conditions often may be reversed with treatment. One meta-analysis, a method of analysis in which results of multiple studies are examined, reported that 9 percent of people with dementia-like symptoms did not in fact have dementia, but had other conditions that were potentially reversible.9 Overview of Alzheimer’s Disease 5 table 1 Causes and Characteristics of Dementia* Cause Characteristics Alzheimer’s disease Most common cause of dementia; accounts for an estimated 60 percent to 80 percent of cases. About half of these cases involve solely Alzheimer’s pathology; many have evidence of pathologic changes related to other dementias. This is called mixed dementia (see mixed dementia in this table). 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, behavior changes and, ultimately, difficulty speaking, swallowing and walking. Revised criteria and guidelines for diagnosing Alzheimer’s were proposed and published in 2011 (see pages 13-14). They recommend that Alzheimer’s be considered a slowly progressive brain disease that begins well before clinical symptoms emerge. The hallmark pathologies of Alzheimer’s are the progressive 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 eventually accompanied by the damage and death of neurons. Vascular dementia Previously known as multi-infarct or post-stroke dementia, vascular dementia is less common as a sole cause of dementia than Alzheimer’s, accounting for about 10 percent of dementia cases. However, it is very common in older individuals with dementia, with about 50 percent having pathologic evidence of vascular dementia (infarcts). In most cases, the infarcts coexist with Alzheimer’s pathology (see mixed dementia in this table).10 Impaired judgment or impaired ability to make decisions, plan or organize is more likely to be the initial symptom, as opposed to the memory loss often associated with the initial symptoms of Alzheimer’s. Vascular dementia occurs most commonly from blood vessel blockage or damage leading to infarcts (strokes) 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. In the past, evidence of vascular dementia was used to exclude a diagnosis of Alzheimer’s (and vice versa). That practice is no longer considered consistent with the pathologic evidence, which shows that the brain changes of Alzheimer’s and vascular dementia commonly coexist. When evidence of two or more causes of dementia are present at the same time, the individual is considered to have mixed dementia (see mixed dementia in this table). Dementia with Lewy bodies (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 slowness, gait imbalance or other parkinsonian movement features. These features, as well as early visuospatial impairment, may occur in the absence of significant memory impairment. Lewy bodies are abnormal aggregations (or clumps) of the protein alpha-synuclein that accumulate in neurons. When they develop in a part of the brain called the cortex, dementia can result. Alpha-synuclein also aggregates in the brains of people with Parkinson’s disease (PD), in which it is accompanied by severe neuronal loss in a part of the brain called the substantia nigra. While people with DLB and PD both have Lewy bodies, the onset of the disease is marked by motor impairment in PD and cognitive impairment in DLB. The brain changes of DLB alone can cause dementia. But very commonly brains with DLB have coexisting Alzheimer’s pathology. In people with both DLB and Alzheimer’s pathology, symptoms of both diseases may emerge and lead to some confusion in diagnosis. Vascular dementia can also coexist and contribute to the dementia. When evidence of more than one dementia is present, the individual is said to have mixed dementia (see mixed dementia in this table). 6 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. table 1 (cont.) Causes and Characteristics of Dementia* Cause Frontotemporal lobar degeneration (FTLD) Characteristics 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 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 protein inclusions (usually tau protein or the transactive response DNA-binding protein). The brain changes of behavioral-variant FTLD may occur in those age 65 years and older, similar to Alzheimer’s disease, but most people with this form of dementia develop symptoms at a younger age (at about age 60). In this younger age group, FTLD is the second most common degenerative dementia. Mixed dementia Characterized by the hallmark abnormalities of more than one cause of dementia — most commonly Alzheimer’s combined with vascular dementia, followed by Alzheimer’s with DLB, and Alzheimer’s with vascular dementia and DLB. Vascular dementia with DLB is much less common.5-6 Recent studies suggest that mixed dementia is more common than previously recognized, with about half of those with dementia having pathologic evidence of more than one cause of dementia.5-6 Parkinson’s disease (PD) dementia Problems with movement (slowness, rigidity, tremor and changes in gait) are common symptoms of PD. In PD, alpha-synuclein aggregates appear in an area deep in the brain called the substantia nigra. The aggregates are thought to cause degeneration of the nerve cells that produce dopamine. The incidence of PD is about one-tenth that of Alzheimer’s. As PD progresses, it often results in dementia secondary to the accumulation of Lewy bodies in the cortex (similar to DLB) or the accumulation of beta-amyloid clumps and tau tangles (similar to Alzheimer’s disease). CreutzfeldtJakob disease This very rare and rapidly fatal disorder impairs memory and coordination and causes behavior changes. Results from a misfolded protein (prion) that causes other proteins throughout the brain to misfold and malfunction. May be hereditary (caused by a gene that runs in one’s family), sporadic (unknown cause) or caused by a known prion infection. A specific form called variant Creutzfeldt-Jakob disease is believed to be caused by consumption of products from cattle affected by mad cow disease. Normal pressure hydrocephalus Symptoms include difficulty walking, memory loss and inability to control urination. Accounts for less than 5 percent of dementia cases.11 Caused by impaired reabsorption of cerebrospinal fluid and the consequent build-up of fluid in the brain, increasing pressure in the brain. People with a history of brain hemorrhage (particularly subarachnoid hemorrhage) and meningitis are at increased risk. Can sometimes be corrected with surgical installation of a shunt in the brain to drain excess fluid. * For more information on these and other causes of dementia, visit alz.org/dementia. Overview of Alzheimer’s Disease 7 Alzheimer’s Disease • Misplacing things and losing the ability to retrace Alzheimer’s disease was first identified more than steps. 100 years ago, but 70 years passed before it was • Decreased or poor judgment. recognized as the most common cause of dementia • Withdrawal from work or social activities. and a “major killer.” Although research has revealed a • Changes in mood and personality, including apathy great deal about Alzheimer’s, much is yet to be and depression. discovered about the precise biologic changes that For more information about the symptoms of cause Alzheimer’s, why it progresses more quickly in Alzheimer’s, visit alz.org. 12 some than in others, and how the disease can be The pace at which symptoms advance from mild to prevented, slowed or stopped. moderate to severe varies from person to person. Researchers believe that early detection will be key to As the disease progresses, cognitive and functional preventing, slowing and stopping Alzheimer’s disease. abilities decline. People need help with basic activities The last 10 years have seen a tremendous growth in of daily living, such as bathing, dressing, eating and research on early detection. This research spurred the using the bathroom; lose their ability to communicate; 2011 publication of proposed new diagnostic criteria fail to recognize loved ones; and become bed-bound and guidelines for Alzheimer’s disease (see pages and reliant on around-the-clock care. When individuals 13-14).13-16 Under the proposed criteria, the disease have difficulty moving, they are more vulnerable to begins before symptoms such as memory loss appear, infections, including pneumonia (infection of the lungs). while earlier criteria require memory loss and a decline Alzheimer’s-related pneumonia is often a contributing in thinking abilities for an Alzheimer’s diagnosis to be factor to the death of people with Alzheimer’s disease. made. Because scientific evaluation of the proposed criteria is ongoing, “Alzheimer’s disease” in this report refers to the disease as defined by the earlier criteria. 17 Changes in the Brain That Are Associated with Alzheimer’s Disease A healthy adult brain has about 100 billion neurons, Symptoms each with long, branching extensions. These Alzheimer’s disease symptoms vary among individuals. extensions enable individual neurons to form The most common initial symptom is a gradually connections with other neurons. At such connections, worsening ability to remember new information. This called synapses, information flows in tiny bursts of memory decline occurs because the first neurons to chemicals that are released by one neuron and malfunction and die are usually neurons in brain detected by a receiving neuron. The brain contains regions involved in forming new memories. As neurons about 100 trillion synapses. They allow signals to travel in other parts of the brain malfunction and die, rapidly through the brain’s neuronal circuits, creating individuals experience other difficulties. The following the cellular basis of memories, thoughts, sensations, are common symptoms of Alzheimer’s: emotions, movements and skills. • Memory loss that disrupts daily life. • Challenges in planning or solving problems. • Difficulty completing familiar tasks at home, at work or at leisure. • Confusion with time or place. • Trouble understanding visual images and spatial relationships. • New problems with words in speaking or writing. 8 The accumulation of the protein beta-amyloid (called beta-amyloid plaques) outside neurons and the accumulation of an abnormal form of the protein tau (called tau tangles) inside neurons are two of several brain changes believed to contribute to the development of Alzheimer’s. In Alzheimer’s disease, information transfer at synapses begins to fail, the number of synapses declines, and neurons eventually Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. die. The accumulation of beta-amyloid is believed to Risk Factors for Alzheimer’s Disease interfere with the neuron-to-neuron communication at With the exception of the rare cases of Alzheimer’s synapses and to contribute to cell death. Tau tangles caused by genetic mutations, experts believe that block the transport of nutrients and other essential Alzheimer’s, like other common chronic diseases, molecules inside neurons and are also believed to develops as a result of multiple factors rather than a contribute to cell death. The brains of people with single cause. This section describes known risk factors advanced Alzheimer’s show dramatic shrinkage for Alzheimer’s. Other factors that may affect risk are from cell loss and widespread debris from dead and being studied. dying neurons. Age The brain changes associated with Alzheimer’s may begin 20 or more years 18-20 before symptoms appear. The greatest risk factor for Alzheimer’s disease is age. Most people with Alzheimer’s disease are diagnosed The time between the initial brain changes of at age 65 or older. People younger than 65 can also Alzheimer’s and the symptoms of advanced develop the disease, although this is much more rare Alzheimer’s is considered by scientists to represent (see the Prevalence section). While age is the greatest the “continuum” of Alzheimer’s. At the start of the risk factor, Alzheimer’s is not a normal part of aging continuum, individuals are able to function normally and age alone is not sufficient to cause the disease. despite these brain changes. Further along the continuum, the brain can no longer compensate for the neuronal damage that has occurred, and individuals show subtle decline in cognitive function. Later, neuronal damage is so significant that individuals show obvious cognitive decline, including symptoms such Apolipoprotein E (APOE)-e4 Gene The APOE gene provides the blueprint for a protein that transports cholesterol in the bloodstream. Everyone inherits one form of the APOE gene — e2, e3 or e4 — from each parent: as memory loss or confusion as to time or place. • The e3 form is the most common,23 with about Later still, basic bodily functions such as swallowing 60 percent of the U.S. population inheriting e3 from are impaired. both parents. 24 • The e4 form is carried by an estimated 20 to Genetic Mutations That Cause Alzheimer’s Disease 30 percent of individuals; approximately 2 percent of A small percentage of Alzheimer’s cases (an estimated the U.S. population has two copies of e4. 23-24 1 percent or less) develop as a result of mutations to • The e2 form is carried by an estimated 10 to any of three specific genes. A genetic mutation is an 20 percent of the population. 23-24 21 abnormal change in the sequence of chemical pairs that make up genes. These mutations involve the gene for the amyloid precursor protein (APP) and the genes for the presenilin 1 and presenilin 2 proteins. Those inheriting a mutation to the APP or presenilin 1 genes are guaranteed to develop Alzheimer’s. Those inheriting a mutation in the presenilin 2 gene have a 95 percent chance of developing the disease. 22 Individuals with mutations in any of these three genes tend to develop Alzheimer’s symptoms before age 65, sometimes as early as age 30, while the vast majority of individuals with Alzheimer’s have late-onset disease, occurring at age 65 or later. Having the e4 form increases one’s risk compared with having the e3 form, while having the e2 form may decrease one’s risk compared with the e3 form. Those who inherit one copy of the e4 form have a three-fold higher risk of developing Alzheimer’s than those without the e4 form, while those who inherit two copies of the e4 form have an 8- to 12-fold higher risk. 25-26 In addition, those with the e4 form are more likely to develop Alzheimer’s at a younger age than those with the e2 or e3 forms of the APOE gene. 27 Researchers estimate that between 40 and 65 percent of people diagnosed with Alzheimer’s have one or two copies of the APOE-e4 gene. 23,28-29 Overview of Alzheimer’s Disease 9 Unlike inheriting a genetic mutation that causes Cardiovascular Disease Risk Factors Alzheimer’s, inheriting the e4 form of the APOE gene Growing evidence suggests that the health of the brain does not guarantee that an individual will develop is closely linked to the overall health of the heart and Alzheimer’s. This is also true for more than 20 recently blood vessels. The brain is nourished by one of the identified genes that appear to affect the risk of body’s richest networks of blood vessels. A healthy Alzheimer’s. These recently identified genes are heart helps ensure that enough blood is pumped believed to have a limited overall effect in the through these blood vessels, and healthy blood vessels population because they are rare or only slightly help ensure that the brain is supplied with the oxygen- increase risk. 30 and nutrient-rich blood it needs to function normally. Family History Many factors that increase the risk of cardiovascular A family history of Alzheimer’s is not necessary for an disease are also associated with a higher risk of individual to develop the disease. However, individuals dementia. These factors include smoking,33-35 obesity in who have a parent, brother or sister with Alzheimer’s midlife36-38 and diabetes.35,39-42 Some evidence suggests are more likely to develop the disease than those who that impaired glucose processing (a precursor to do not have a first-degree relative with Alzheimer’s. 25,31 diabetes) may also result in an increased risk for Those who have more than one first-degree relative dementia. 36,43-44 Growing evidence also implicates with Alzheimer’s are at even higher risk. When midlife hypertension36,45-47 and midlife high diseases run in families, heredity (genetics), shared cholesterol48-49 as risk factors. 32 environmental and lifestyle factors, or both, may play a role. The increased risk associated with having a family history of Alzheimer’s is not entirely explained by whether the individual has inherited the APOE-e4 risk gene. Conversely, factors that protect the heart may also protect the brain and reduce the risk of developing Alzheimer’s and other dementias. Physical activity42,50-51 appears to be one of these factors. In addition, emerging evidence suggests that consuming a diet that Mild Cognitive Impairment (MCI) benefits the heart, such as one that is low in saturated MCI is a condition in which an individual has mild but fats and rich in vegetables and fruits, may be measurable changes in thinking abilities that are associated with reduced Alzheimer’s and dementia noticeable to the person affected and to family risk.42,52-54 members and friends, but do not affect the individual’s ability to carry out everyday activities. People with MCI, especially MCI involving memory problems, are more likely to develop Alzheimer’s and other dementias than people without MCI. Revised criteria and guidelines for diagnosis of Alzheimer’s disease published in 201113-16 Unlike genetic risk factors, many cardiovascular disease risk factors are modifiable — that is, they can be changed to decrease the likelihood of developing cardiovascular disease and, possibly, Alzheimer’s and other forms of dementia. (see pages 13-14) suggest that in some cases MCI is Researchers have begun to study combinations of actually an early stage of Alzheimer’s or another health factors and lifestyle behaviors to learn whether dementia. However, MCI does not always lead to they are better than individual factors and behaviors at dementia. In some individuals, MCI reverts to normal identifying increased risk.55 cognition or remains stable. In other cases, such as when a medication causes cognitive impairment, MCI is mistakenly diagnosed. Therefore, it’s important that people experiencing cognitive impairment seek help as soon as possible for diagnosis and possible treatment. 10 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Education amnesia that lasts more than 30 minutes. If loss of People with fewer years of formal education are at consciousness or post-traumatic amnesia lasts more higher risk for Alzheimer’s and other dementias than than 24 hours, the injury is considered severe. Half of all those with more years of formal education. moderate and severe TBIs are caused by motor vehicle 56-60 Some researchers believe that having more years of education accidents.78 Moderate TBI is associated with twice the builds a “cognitive reserve” that enables individuals to risk of developing Alzheimer’s and other dementias better compensate for changes in the brain that could compared with no head injuries, and severe TBI is result in symptoms of Alzheimer’s or another associated with 4.5 times the risk.79 dementia.59,61-62 According to the cognitive reserve hypothesis, having more years of education increases the connections between neurons in the brain and enables the brain to compensate for the early brain changes of Alzheimer’s by using alternate routes of neuron-to-neuron communication to complete a cognitive task. Individuals who have experienced repeated head injuries, such as boxers, football players and combat veterans, are at higher risk of dementia, cognitive impairment and neurodegenerative disease than individuals who have not experienced head injury.80-86 Evidence suggests that even repeated mild TBI might promote neurodegenerative disease.87-89 Some of these Some scientists believe other factors may contribute neurodegenerative diseases, such as chronic traumatic to or explain the increased risk of dementia among encephalopathy, can only be distinguished from those with lower educational attainment. These Alzheimer’s upon autopsy. factors include being more likely to have occupations that are less mentally stimulating.63 In addition, lower educational attainment may reflect lower socioeconomic status,63 which may increase one’s likelihood of poor nutrition and decrease one’s ability to afford health care or obtain suggested treatments. Social and Cognitive Engagement Diagnosis A diagnosis of Alzheimer’s disease is most commonly made by an individual’s primary care physician. No single, simple test exists to diagnose Alzheimer’s disease. A variety of approaches and tools are available to help make a diagnosis. They include the following: Additional studies suggest that remaining socially • Obtaining a medical and family history from the and mentally active throughout life may support brain individual, including psychiatric history and history of health and possibly reduce the risk of Alzheimer’s cognitive and behavioral changes. and other dementias.64-76 Remaining socially and • Asking a family member or other person close to the mentally active may help build cognitive reserve, individual to provide input about changes in thinking but the exact mechanism by which this may occur skills or behavior. is unknown. More research is needed to better • Seeking input from a specialist, such as a neurologist. understand how social and cognitive engagement • Conducting cognitive tests and physical and may affect biological processes to reduce risk. neurologic examinations. • Having the individual undergo a magnetic resonance Traumatic Brain Injury (TBI) Moderate and severe TBIs increase the risk of developing Alzheimer’s disease and other dementias.77 TBI is the disruption of normal brain function caused by imaging (MRI) scan, which can help identify brain changes, such as a tumor, that could explain the individual’s symptoms. a blow or jolt to the head or penetration of the skull by a Before making a diagnosis of Alzheimer’s, physicians foreign object. Not all blows or jolts to the head disrupt may refer to medical resources such as the DSM-5 and brain function. Moderate TBI is defined as a head injury published diagnostic criteria that delve even further into resulting in loss of consciousness or post-traumatic the disease. Overview of Alzheimer’s Disease 11 Treatment of Alzheimer’s Disease Pharmacologic Treatment Pharmacologic treatments employ medication to slow or stop an illness or treat its symptoms. Six drugs have been approved by the U.S. Food and Drug Administration (FDA) that temporarily improve symptoms of Alzheimer’s disease by increasing the Non-pharmacologic therapies are often used with the goal of maintaining or improving cognitive function, the ability to perform activities of daily living, or overall quality of life. They also may be used with the goal of reducing behavioral symptoms such as depression, apathy, wandering, sleep disturbances, agitation and aggression. amount of chemicals called neurotransmitters in the Systematic reviews of published research on brain. The effectiveness of these drugs varies from non-pharmacologic therapies have found that some, person to person. However, none of the treatments such as exercise and cognitive activity (for example, available today for Alzheimer’s disease slows or stops gardening, word games, listening to music and cooking) the damage to neurons that causes Alzheimer’s show promise.91 However, few non-pharmacologic symptoms and eventually makes the disease fatal. therapies have been tested in randomized controlled In December 2014, the FDA approved the sixth drug, which combines two existing FDA-approved Alzheimer’s drugs and is for moderate to severe disease. Prior to that, the last approval of an Alzheimer’s drug was in 2003. In the decade of 2002–2012, 244 drugs for Alzheimer’s were tested in clinical trials registered with ClinicalTrials.gov, a National Institutes of Health registry of publicly and privately funded clinical studies.90 The drug approved in 2003 was the only drug studies, which provide the strongest evidence of whether a therapy is effective. In randomized controlled studies, participants are randomly assigned to receive a therapy or not receive a therapy, and results from the two groups are compared. Additional research on non-pharmacologic therapies is needed to better evaluate their effectiveness. Living with Alzheimer’s Disease of the 244 tested to complete the clinical trials process Despite the lack of disease-modifying therapies for and receive approval. Many factors contribute to the Alzheimer’s, studies have consistently shown that difficulty of developing effective treatments for active management of Alzheimer’s and other dementias Alzheimer’s. These factors include the high cost of drug can improve quality of life through all stages of the development, the relatively long time needed to disease for individuals with dementia and their observe disease progression in Alzheimer’s, and the caregivers.92-94 Active management includes: structure of the brain, which is protected by the (1) appropriate use of available treatment options, blood-brain barrier, through which few drugs can cross. (2) effective management of coexisting conditions, Non-Pharmacologic Therapy Non-pharmacologic therapies are those that employ approaches other than medication, such as music therapy and reminiscence therapy (therapy in which photos and other familiar items may be used to elicit recall). As with current pharmacologic therapies, (3) coordination of care among physicians, other health care professionals and lay caregivers, (4) participation in activities and/or adult day care programs and (5) taking part in support groups and supportive services. non-pharmacologic therapies have not been shown To learn more about each of these ways of helping to to alter the course of Alzheimer’s disease. manage Alzheimer’s, as well as practical information for living with the disease and being a caregiver for an individual with Alzheimer’s, visit alz.org. 12 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. A Modern Diagnosis of Alzheimer’s Disease: Proposed Criteria and Guidelines In 2011, the National Institute on Aging Alzheimer’s disease to be diagnosed (as detected by brain imaging and (NIA) and the Alzheimer’s Association using the 1984 criteria, memory loss and other biomarker tests) would be said to proposed revised criteria and a decline in thinking abilities must have have preclinical Alzheimer’s disease. guidelines for diagnosing Alzheimer’s already occurred. Those who have very mild symptoms disease.13-16 These criteria and guidelines updated diagnostic criteria and guidelines published in 1984 by the National Institute of Neurological Disorders and Stroke and the Alzheimer’s Association. In 2012, the 17 NIA and the Alzheimer’s Association also proposed new guidelines to help pathologists describe and categorize the brain changes associated with Alzheimer’s disease and other dementias on autopsy.95 It is important to note that more research is needed before the proposed diagnostic criteria and guidelines can be used in clinical settings, such as in a doctor’s office. Differences Between the Original and Proposed Criteria The 1984 diagnostic criteria and guidelines were based chiefly on a doctor’s clinical judgment about the cause of an individual’s symptoms, taking into account reports from the individual, family members and friends; results of cognitive tests; and general neurological assessment. The new criteria and guidelines incorporate two notable changes: (2) They incorporate biomarker tests. A biomarker is a biological factor that can be measured to indicate the presence or absence of disease, or the risk of developing a disease. For example, blood glucose level is a biomarker of diabetes, and cholesterol level is a biomarker of would be described as having MCI due to Alzheimer’s. Individuals whose symptoms are more pronounced and interfere with carrying out everyday tasks would be said to have dementia due to Alzheimer’s disease. heart disease risk. Levels of certain Preclinical Alzheimer’s Disease — proteins in fluid (for example, levels of In this stage, individuals have beta-amyloid and tau in the cerebrospinal measurable changes in the brain, fluid and the presence of particular cerebrospinal fluid and/or blood groups of proteins in blood) are among (biomarkers) that indicate the earliest several factors being studied as possible signs of disease, but they have not yet biomarkers for Alzheimer’s. Finding a developed noticeable symptoms such simple and inexpensive test, such as a as memory loss. This preclinical or blood test, would be ideal for patients, presymptomatic stage reflects current physicians and scientists. Research is thinking that Alzheimer’s-related brain underway to develop such a test, but no changes may begin 20 years or more test to date has shown the accuracy and before symptoms occur.18-20 Although reliability needed to diagnose Alzheimer’s. the 2011 criteria and guidelines identify The Three Stages of Alzheimer’s Disease Proposed by the 2011 Criteria and Guidelines preclinical disease as a stage of Alzheimer’s, they do not establish diagnostic criteria that doctors can use The three stages of Alzheimer’s now. Rather, they state that additional disease proposed by the 2011 criteria research is needed before this stage of and guidelines are preclinical Alzheimer’s can be identified. Alzheimer’s disease, mild cognitive impairment (MCI) due to Alzheimer’s disease, and dementia due to (1) They identify three stages of Alzheimer’s disease. An individual who Alzheimer’s disease, with the first does not yet have outward symptoms occurring before symptoms such as of Alzheimer’s but does have some of memory loss develop. In contrast, for the early brain changes of Alzheimer’s but can still perform everyday tasks MCI Due to Alzheimer’s Disease — Individuals with MCI have mild but measurable changes in thinking abilities that are noticeable to the person affected and to family members and friends, but that do not affect the Overview of Alzheimer’s Disease 13 A Modern Diagnosis of Alzheimer’s Disease: Proposed Criteria and Guidelines (continued) individual’s ability to carry out everyday testing for people with MCI to learn “disease-modifying” treatments) will activities. Studies indicate that as many whether they have biological changes be most effective when administered as 10 to 20 percent of people age 65 or that put them at high risk of developing during the preclinical and MCI stages older have MCI.96-98 Among people Alzheimer’s disease or another of the disease. Biomarker tests will be whose MCI symptoms cause them dementia. If testing shows that essential to identify which individuals enough concern to contact their changes in the brain, cerebrospinal are in these early stages and should physicians for an exam, as many as fluid and/or blood are similar to the receive disease-modifying treatment. 15 percent progress from MCI to changes of Alzheimer’s, the proposed They also will be critical for monitoring dementia each year. Nearly half of all criteria and guidelines recommend a the effects of treatment. At this time, people who have visited a doctor about diagnosis of MCI due to Alzheimer’s however, more research is needed to MCI symptoms will develop dementia disease. However, this diagnosis validate the accuracy of biomarkers and in 3 or 4 years.99 cannot currently be made, as additional better understand which biomarker research is needed to validate the 2011 test or combination of tests is most criteria before they can be used in effective in diagnosing Alzheimer’s clinical settings. disease. The most effective test or When individuals in a community are assessed, regardless of whether they have memory or cognitive complaints, combination of tests may differ the estimated percentage who will Dementia Due to Alzheimer’s progress from MCI to Alzheimer’s is Disease — This stage, as described by slightly lower — up to 10 percent per the 2011 diagnostic criteria and year.100 Further cognitive decline is guidelines, is characterized by quite more likely among individuals whose noticeable memory, thinking and Criteria and Validating Biomarkers MCI involves memory problems than behavioral symptoms that, unlike MCI, Since the revised criteria were among those whose MCI does not impair a person’s ability to function in published in 2011, dozens of scientists involve memory problems. Over a year, daily life. have published results of studies most individuals with MCI who are identified through community sampling remain cognitively stable. Some, primarily those without memory problems, experience an improvement in cognition or revert to normal cognitive status. 101 It is unclear why some people with MCI develop dementia and others do not. After accurate and reliable biomarker tests for Alzheimer’s have been identified, the 2011 criteria and guidelines recommend biomarker 14 Biomarker Tests The 2011 criteria and guidelines identify two biomarker categories: (1) biomarkers showing the level of beta-amyloid accumulation in the brain and (2) biomarkers showing that neurons in the brain are injured or actually degenerating. depending on the stage of the disease and the cause of dementia.102 Progress Toward Implementing implementing the revised criteria in research settings, examining the accuracy of biomarker tests in detecting and predicting Alzheimer’s, and using biomarker tests to distinguish Alzheimer’s from other forms of dementia. Although additional studies are needed before the revised criteria and guidelines are ready for use Many researchers believe that future in physicians’ offices, preliminary treatments to slow or stop the evidence supporting the revised criteria progression of Alzheimer’s disease and and biomarker tests is growing.103-119 preserve brain function (called Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Prevalence older Americans has Alzheimer’s disease. Prevalence 15 Millions of Americans have Alzheimer’s disease and other dementias. The number of Americans with Alzheimer’s disease and other dementias will grow each year as the size and proportion of the U.S. population age 65 and older continue to increase. The number will escalate rapidly in coming years as the baby boom generation ages. figure 1 Ages of People with Alzheimer’s Disease in the United States, 2015 • • • • The prevalence of Alzheimer’s disease refers to the 85+ years, 38% 75-84 years, 43% 65-74 years, 15% <65 years, 4% proportion of people in a population who have Alzheimer’s at a given point in time. This section reports on the number and proportion of people with Created from data from Hebert et al.120, A3 Alzheimer’s disease to describe the magnitude of the burden of Alzheimer’s on the community and the health care system. Incidence, the number of new cases per year, is also provided as an estimate of the risk of developing Alzheimer’s disease and other dementias for different age groups. Estimates from selected studies on the number and proportion of people with Alzheimer’s and other dementias vary depending on how each study was conducted. Data from several studies are used in this section. Prevalence of Alzheimer’s Disease and Other Dementias in the United States An estimated 5.3 million Americans of all ages have Alzheimer’s disease in 2015. This number includes an estimated 5.1 million people age 65 and older120, A1 and approximately 200,000 individuals under age 65 who have younger-onset Alzheimer’s.121 • One in nine people age 65 and older (11 percent) has Alzheimer’s disease. A2 • About one-third of people age 85 and older (32 percent) have Alzheimer’s disease.120 • Eighty-one percent of people who have Alzheimer’s disease are age 75 or older (Figure 1).120, A3 The estimated number of individuals age 65 and older with Alzheimer’s disease comes from a recent study using the latest data from the 2010 U.S. Census and the Chicago Health and Aging Project (CHAP), a population-based study of chronic health diseases of older people.120 National estimates of the prevalence of all forms of dementia are not available from CHAP, but are available from other population-based studies including the Aging, Demographics, and Memory Study (ADAMS), a nationally representative sample of older adults.122-123, A4 Based on estimates from ADAMS, 14 percent of people age 71 and older in the United States have dementia.122 Prevalence studies such as CHAP and ADAMS are designed so that everyone in the study is tested for dementia. But in the community, only about half of those who would meet the diagnostic criteria for Alzheimer’s disease and other dementias are diagnosed with dementia by a physician.124-125 Because Alzheimer’s disease is underdiagnosed, half of the estimated 5.3 million Americans with Alzheimer’s may not have been told by a physician that they have it. 16 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Preclinical Alzheimer’s Disease 13 percent of Americans age 45 and older reported The estimates of the number and proportion of people experiencing worsening confusion or memory loss, but who have Alzheimer’s are based on commonly 77 percent had not consulted a health care professional accepted criteria for diagnosing Alzheimer’s disease about it.129 Individuals concerned about declines in that have been used since 1984. These criteria are memory and other cognitive abilities should consult a applicable only after the onset of symptoms. But as health care professional. described in the Overview (see pages 13-14), revised and the Alzheimer’s Association published in 201113-16 Differences Between Women and Men in the Prevalence of Alzheimer’s Disease and Other Dementias propose that Alzheimer’s begins before the onset of More women than men have Alzheimer’s disease and symptoms, which aligns with what most researchers other dementias. Almost two-thirds of Americans with now believe. The 2011 criteria identify three stages of Alzheimer’s are women.120, A5 Of the 5.1 million people Alzheimer’s disease: preclinical Alzheimer’s, mild age 65 and older with Alzheimer’s in the United States, cognitive impairment (MCI) due to Alzheimer’s and 3.2 million are women and 1.9 million are men.120, A5 dementia due to Alzheimer’s. Because more research is Based on estimates from ADAMS, among people age needed to validate tests for detecting preclinical 71 and older, 16 percent of women have Alzheimer’s Alzheimer’s and MCI due to Alzheimer’s, the number of disease and other dementias compared with 11 percent people in these stages is difficult to estimate. However, of men.122,130 criteria and guidelines by National Institute on Aging if Alzheimer’s disease could be detected before symptoms developed, the number of people reported to have Alzheimer’s disease would be much larger than what is presented in this report. There are a number of potential reasons why more women than men have Alzheimer’s disease and other dementias. The prevailing view has been that this discrepancy is due to the fact that women live longer Subjective Cognitive Decline than men on average, and older age is the greatest risk The experience of worsening or more frequent factor for Alzheimer’s.130-131 Many studies of incidence confusion or memory loss (often referred to as (which indicates risk of developing disease) of subjective cognitive decline) is one of the earliest Alzheimer’s57-58,131-135 or any dementia56-57,132-133,136 have warning signs of Alzheimer’s disease and may be a way found no significant difference between men and to identify people who are at high risk of developing women in the proportion who develop Alzheimer’s or Alzheimer’s and other dementias as well as MCI. other dementias at any given age. However, limited new Subjective cognitive decline does not refer to someone research suggests that risk could be higher for women, occasionally forgetting their keys or the name of potentially due to biological or genetic variations or even someone they recently met; it refers to more serious different life experiences (for example, type and amount issues such as having trouble remembering how to do of education, or occupational choices).137 Data from the things they have always done or forgetting things that Framingham Study suggests that because men have a they would normally know. Not all of those who higher rate of death from cardiovascular disease than experience subjective cognitive decline go on to women in middle age, men who survive beyond age develop MCI or Alzheimer’s disease and other 65 may have a healthier cardiovascular risk profile and dementias, but many do.128 Data from the 2012 thus a lower risk for dementia than women of the same Behavioral Risk Factor Surveillance System (BRFSS) age, though more research is needed to support this survey, which included questions on self-perceived finding.138 Another large study showed that the confusion and memory loss for 21 states, showed that APOE-e4 genotype, the best known genetic risk factor 126-127 Prevalence 17 for Alzheimer’s disease, may have a stronger association There is evidence that missed diagnoses of Alzheimer’s with Alzheimer’s disease in women than men. disease and other dementias are more common among 139-140 It is unknown why this may be the case, but some evidence older African-Americans and Hispanics than among suggests an interaction between the APOE-e4 older whites,151-152 but it is unclear whether disparities in genotype and the sex hormone estrogen.141-142 Finally, missed diagnoses have lessened in recent years. Based because low education is a risk factor for dementia, on data for Medicare beneficiaries age 65 and older, 50-60 it is possible that lower educational attainment in Alzheimer’s disease or another dementia had been women than in men born in the first half of the 20th diagnosed in 8 percent of white older adults, century could account for a higher risk of Alzheimer’s 11 percent of African-Americans and 12 percent of and other dementias in women; however, this possibility Hispanics.153 Although rates of diagnosis were higher has not been thoroughly investigated scientifically. among African-Americans than among whites, Racial and Ethnic Differences in the Prevalence of Alzheimer’s Disease and Other Dementias Although there are more non-Hispanic whites living with Alzheimer’s and other dementias than people of any other racial or ethnic group in the United States, older according to prevalence studies that detect all people who have dementia irrespective of their use of the health care system, the rates should be twice as high (approximately 16 percent instead of 11 percent). African-Americans and Hispanics are more likely than Estimates of the Number of People with Alzheimer’s Disease by State older whites to have Alzheimer’s disease and other Table 2 lists the estimated number of people age 65 dementias.143-144 A review of many studies by an expert and older with Alzheimer’s disease by state for 2015, panel concluded that older African-Americans are about the projected number for 2025, and the projected twice as likely to have Alzheimer’s and other dementias percentage change in the number of people with as older whites,145-146 and Hispanics are about one and Alzheimer’s between 2015 and 2025.154, A7 Comparable one-half times as likely to have Alzheimer’s and other estimates and projections for other causes of dementia dementias as older whites.146-147, A6 are not available. Variations in health, lifestyle and socioeconomic risk As shown in Figure 2, between 2015 and 2025 every factors across racial groups likely account for most of state and region across the country is expected to the differences in risk of Alzheimer’s disease and other experience an increase of at least 14 percent in the dementias by race. Despite some evidence that the number of people with Alzheimer’s due to increases in influence of genetic risk factors on Alzheimer’s and the population age 65 and older. The West and other dementias may differ by race,148 genetic factors do Southeast are expected to experience the largest not appear to account for the large prevalence increases in numbers of people with Alzheimer’s differences among racial groups.149-150 Instead, health between 2015 and 2025. These increases will have a conditions such as cardiovascular disease and diabetes, marked impact on states’ health care systems, as well which increase risk for Alzheimer’s disease and other as on families and caregivers. dementias, are believed to account for these differences as they are more prevalent in African-American and Incidence of Alzheimer’s Disease Hispanic people. Lower levels of education and other While prevalence is the number of existing cases of a socioeconomic characteristics in these communities disease in a population at a given time, incidence is the may also increase risk. Some studies suggest that number of new cases of a disease that develop in a differences based on race and ethnicity do not persist in given period of time in a defined population — in this rigorous analyses that account for these factors.57,122 case, the U.S. population age 65 or older. Incidence provides a measure of risk for developing a disease. 18 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. table 2 Projections of Total Numbers of Americans Age 65 and Older with Alzheimer’s by State Projected Number w/ Alzheimer’s (in thousands) Percentage Change State 2015 2025 2015-2025 Projected Number w/ Alzheimer’s (in thousands) Percentage Change State 2015 2025 2015-2025 Alabama 87 110 26.4 Montana 19 27 42.1 Alaska 6.4 11 71.9 Nebraska 33 40 21.2 Arizona 120 200 66.7 Nevada 39 64 64.1 Arkansas 53 67 26.4 New Hampshire 22 32 45.5 California 590 840 42.4 New Jersey 170 210 23.5 Colorado 65 92 41.5 New Mexico 36 53 47.2 Connecticut 73 91 24.7 New York 380 460 21.1 Delaware 17 23 35.3 North Carolina 160 210 31.3 District of Columbia 9.1 9.0 -1.1 North Dakota 14 16 14.3 Florida 500 720 44.0 Ohio 210 250 19.0 Georgia 130 190 46.2 Oklahoma 60 76 26.7 Hawaii 26 35 34.6 Oregon 60 84 40.0 Idaho 23 33 43.5 Pennsylvania 270 320 18.5 Illinois 210 260 23.8 Rhode Island 22 27 22.7 Indiana 110 13018.2 South Carolina 81 120 48.1 16 20 25.0 Iowa 63 73 15.9 South Dakota Kansas 51 62 21.6 Tennessee 110 140 27.3 Kentucky 68 86 26.5 Texas 340 490 44.1 Louisiana 82 110 34.1 Utah 29 42 44.8 Maine 26 35 34.6 Vermont 12 17 41.7 Maryland 99 130 31.3 Virginia 130 190 46.2 Massachusetts120 150 25.0 Washington 100 140 40.0 Michigan 22022.2 West Virginia 36 44 22.2 180 Minnesota 89 120 34.8 Wisconsin 110 13018.2 Mississippi 51 65 27.5 Wyoming Missouri 110 8.8 13.0 47.7 13018.2 Created from data provided to the Alzheimer’s Association by Weuve et al.154, A7 Prevalence 19 figure 2 Projected Increases Between 2015 and 2025 in Alzheimer’s Disease Prevalence by State 14.3% - 21.6% 21.7% - 26.4% 26.5% - 34.8% 34.9% - 44.1% 44.2% - 71.9% AK WA MT ME ND OR VT NH MN ID WI SD NY WY PA IA NE NV UT IL CO CA KS AZ MA CT RI MI NM IN NC AR SC MS TX VA KY TN HI NJ MD DE DC WV MO OK OH AL GA LA FL Change from 2015 to 2025 for Washington, D.C.: -1.1% Created from data provided to the Alzheimer’s Association by Weuve et al.154, A7 Approximately 473,000 people age 65 or older will per 1,000 people age 85 and older. A8 Because of the develop Alzheimer’s disease in the United States in increasing number of people age 65 and older in the 2015. A8 The number of new cases of Alzheimer’s United States, particularly the oldest-old, the annual increases dramatically with age: in 2015, there will be number of new cases of Alzheimer’s and other approximately 61,000 new cases among people age 65 dementias is projected to double by 2050.155 to 74, 172,000 new cases among people age 75 to 84, and 240,000 new cases among people age 85 and older (the “oldest-old”).155, A8 This translates to approximately two new cases per 1,000 people age 65 to 74, 13 new cases per 1,000 people age 75 to 84, and 39 new cases 20 • Every 67 seconds, someone in the United States develops Alzheimer’s. A9 • By mid-century, someone in the United States will develop the disease every 33 seconds. A9 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Lifetime Risk of Alzheimer’s Disease though results are mixed.165 These declines have largely Lifetime risk is the probability that someone of a given been attributed to increasing levels of education and age will develop a condition during his or her remaining improved control of cardiovascular risk factors.159,166 lifespan. Data from the Framingham Study were used to Such findings are promising and suggest that estimate lifetime risks of Alzheimer’s disease by age identifying and reducing risk factors for Alzheimer’s and and sex.156, A10 As shown in Figure 3, the study found other dementias may be effective. Although these that the estimated lifetime risk for Alzheimer’s findings indicate that a person’s risk of dementia at any specifically at age 65 was one in six (17 percent) for given age may be decreasing slightly, it should be noted women and one in 11 (9 percent) for men.156 that the total number of Americans with Alzheimer’s and other dementias is expected to continue to Trends in the Prevalence and Incidence of Alzheimer’s Disease increase dramatically because of the population’s shift A growing number of studies indicate that the these findings are promising, they are outweighed by age-specific risk of Alzheimer’s and other dementias in the aging of the population, and the social and the United States and other higher-income Western economic burden of Alzheimer’s and other dementias countries may have declined in the past 25 years, will continue to grow. to older ages (see Looking to the Future). Thus, while 157-164 figure 3 Estimated Lifetime Risk for Alzheimer’s, by Age and Sex, from the Framingham Study Percentage Men Women 25 20 20% 19% 17.2% 17% 15 12% 10 9.1% 9% 10% 5 0 Age 65 75 85 Created from data from Seshadri et al.156 Prevalence 21 Looking to the Future • In 2010, there were an estimated 454,000 new cases The number of Americans surviving into their 80s, 90s of Alzheimer’s disease. By 2030, that number is and beyond is expected to grow dramatically due to projected to be 615,000 (a 35 percent increase), and advances in medicine and medical technology, as well by 2050, 959,000 (a 110 percent increase from as social and environmental conditions. 2010).155 167 Additionally, a large segment of the American population — the • By 2025, the number of people age 65 and older with baby boom generation — has begun to reach age 65 Alzheimer’s disease is estimated to reach 7.1 million and older, when the risk for Alzheimer’s and other — a 40 percent increase from the 5.1 million age 65 dementias is elevated. By 2030, the segment of the and older affected in 2015.120, A12 • By 2050, the number of people age 65 and older with U.S. population age 65 and older will increase Alzheimer’s disease may nearly triple, from 5.1 million substantially, and the projected 72 million older Americans will make up approximately 20 percent of to a projected 13.8 million, barring the development the total population (up from 13 percent in 2010). of medical breakthroughs to prevent or cure the 167 As the number of older Americans grows rapidly, so too will the numbers of new and existing cases of Alzheimer’s disease, as shown in Figure 4.120, A11 disease.120, A11 Previous estimates based on high range projections of population growth provided by the U.S. Census suggest that this number may be as high as 16 million.168, A13 figure 4 Projected Number of People Age 65 and Older (Total and by Age Group) in the U.S. Population with Alzheimer’s Disease, 2010 to 2050 Millions of people with Alzheimer’s Ages 65-74 Ages 75-84 Ages 85+ 13.8 14 11.6 12 10 8.4 8 5.8 6 4.7 4 2 0 Year 2010 2020 2030 2040 Created from data from Hebert et al.120, A11 22 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. 2050 Growth of the Oldest-Old Population Longer life expectancies and aging baby boomers will also increase the number and percentage of Americans who will be among the oldest-old, individuals age 85 and older. Between 2010 and 2050, the oldest-old are expected to increase from 14 percent of all people age 65 and older in the United States to 20 percent of all people age 65 and older.167 This will result in an additional 13 million oldest-old people — individuals at the highest risk for developing Alzheimer’s.167 • In 2015, about 2 million people who have Alzheimer’s disease are age 85 or older, accounting for 38 percent of all people with Alzheimer’s.120 • When the first wave of baby boomers reaches age 85 (in 2031), it is projected that more than 3 million people age 85 and older will have Alzheimer’s.120 • By 2050, as many as 7 million people age 85 and older may have Alzheimer’s disease, accounting for half (51 percent) of all people 65 and older with Alzheimer’s.120 Prevalence 23 Mortality and Morbidity seniors who die in a given year has been diagnosed with Alzheimer’s or another dementia. 24 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Alzheimer’s disease is officially listed as the sixth-leading cause of death in the United States.169 It is the fifthleading cause of death for those age 65 and older.169 However, it may cause even more deaths than official sources recognize. Alzheimer’s is also a leading cause of disability and poor health (morbidity). Before a person with Alzheimer’s dies, he or she lives through years of morbidity as the disease progresses. is a contributing cause of death for more Americans than is indicated by CDC data. A recent study using data from the Rush Memory and Aging Project and the Religious Orders Study supports this concept; researchers estimated that 500,000 deaths among people age 75 and older could be attributed to Alzheimer’s disease in the United States in 2010 (estimates for people age 65 to 74 were not available), meaning that those deaths would not be expected to occur in that year if those individuals did not have Alzheimer’s.176 The situation has been described as a “blurred distinction between death with dementia and death from dementia.”177 According to data from the Chicago Health and Aging Project (CHAP), an estimated 600,000 people Deaths from Alzheimer’s Disease age 65 and older died with Alzheimer’s in the United It is difficult to determine how many deaths are caused States in 2010, meaning they died after developing by Alzheimer’s disease each year because of the way Alzheimer’s disease.178 Of these, an estimated 400,000 causes of death are recorded. According to data from were age 85 and older, and an estimated 200,000 were the National Center for Health Statistics of the Centers age 65 to 84. Furthermore, according to Medicare data, for Disease Control and Prevention (CDC), 84,767 one-third of all seniors who die in a given year have been people died from Alzheimer’s disease in 2013.169 The diagnosed with Alzheimer’s or another dementia.153,179 CDC considers a person to have died from Alzheimer’s Although some seniors who die with Alzheimer’s disease if the death certificate lists Alzheimer’s as the die from causes that are unrelated to Alzheimer’s, many of underlying cause of death, defined by the World Health them die from Alzheimer’s disease itself or from Organization as “the disease or injury which initiated the conditions in which Alzheimer’s was a contributing cause, train of events leading directly to death.” such as pneumonia. A recent study evaluating the 170 However, death certificates for individuals with Alzheimer’s often contribution of individual common diseases to death using list acute conditions such as pneumonia as the primary a nationally representative sample of older adults found cause of death rather than Alzheimer’s.171-173 Severe that dementia was the second largest contributor to death dementia frequently causes complications such as behind heart failure.180 Thus, for people who die with immobility, swallowing disorders and malnutrition that Alzheimer’s, the disease is expected to be a significant can significantly increase the risk of other serious direct contributor to their deaths. conditions that can cause death. One such condition is In 2015, an estimated 700,000 people in the United pneumonia, which is the most commonly identified States age 65 and older will die with Alzheimer’s based on cause of death among elderly people with Alzheimer’s CHAP data.178 The true number of deaths caused by disease and other dementias.174-175 The number of Alzheimer’s is likely to be somewhere between the official people with Alzheimer’s disease who die while estimated numbers of those dying from Alzheimer’s (as experiencing these other conditions may not be counted indicated by death certificates) and those dying with among the number of people who died from Alzheimer’s. Regardless of the cause of death, among Alzheimer’s disease according to the CDC definition, people age 70, 61 percent of those with Alzheimer’s are even though Alzheimer’s disease is likely a contributing expected to die before age 80 compared with 30 percent cause of death. Thus, it is likely that Alzheimer’s disease of people without Alzheimer’s.181 Mortality and Morbidity 25 Public Health Impact of Deaths from Alzheimer’s Disease State-by-State Deaths from Alzheimer’s Disease As the population of the United States ages, Table 3 provides information on the number of deaths Alzheimer’s is becoming a more common cause of due to Alzheimer’s by state in 2013, the most recent death. Although deaths from other major causes have year for which state-by-state data are available. This decreased significantly, official records indicate that information was obtained from death certificates and deaths from Alzheimer’s disease have increased reflects the condition identified by the physician as significantly. Between 2000 and 2013, deaths the underlying cause of death. The table also attributed to Alzheimer’s disease increased 71 percent, provides annual mortality rates by state to compare while those attributed to the number one cause of the risk of death due to Alzheimer’s disease across death (heart disease) decreased 14 percent states with varying population sizes and attributes. (Figure 5). 169 For the United States as a whole, in 2013, the The increase in the number and proportion of death certificates listing Alzheimer’s as mortality rate for Alzheimer’s disease was 27 deaths the underlying cause of death reflects both changes in per 100,000 people.169 patterns of reporting deaths on death certificates over time as well as an increase in the actual number of deaths attributable to Alzheimer’s. figure 5 Percentage Changes in Selected Causes of Death (All Ages) Between 2000 and 2013 Percentage 70 +71% 60 50 40 30 20 10 0 -2% -10 -11% -14% -23% -20 -30 -40 -52% -50 Cause of Death Breast Prostate Heart Stroke HIV Alzheimer’s cancer cancer disease disease Created from data from the National Center for Health Statistics.169 26 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. table 3 Number of Deaths and Annual Mortality Rate (per 100,000) Due to Alzheimer’s Disease by State, 2013 State Alabama Number of Deaths Mortality Rate State Number of Deaths Mortality Rate 1,398 28.9 Montana 267 26.3 72 9.8 Nebraska 557 29.8 2,383 36.0 Nevada 448 16.1 Arkansas 918 31.0 New Hampshire 351 26.5 California 11,891 31.0 New Jersey 1,812 20.4 Colorado 1,316 25.0 New Mexico 339 16.3 Connecticut 824 22.9 New York 2,556 13.0 Delaware 192 20.7 North Carolina 2,872 29.2 District of Columbia 130 20.1 North Dakota 363 50.2 Florida 5,093 26.0 Ohio 3,798 32.8 Georgia 2,048 20.5 Oklahoma 1,145 29.7 Hawaii 260 18.5 Oregon 1,312 33.4 Idaho 347 21.5 Pennsylvania 3,271 25.6 Illinois 2,919 22.7 Rhode Island 346 32.9 Indiana 2,104 32.0 South Carolina 1,623 34.0 Iowa 1,252 40.5 South Dakota 418 49.5 742 25.6 Tennessee 2,536 39.0 Kentucky 1,462 33.3 Texas 5,293 20.0 Louisiana 1,50532.5 Utah 412 14.2 269 42.9 Alaska Arizona Kansas Maine 401 30.2 Vermont Maryland 919 15.5 Virginia 1,642 19.9 Massachusetts 1,699 25.4 Washington 3,277 47.0 Michigan 3,22032.5 West Virginia 590 31.8 Minnesota 1,427 26.3 Wisconsin 1,671 29.1 Mississippi 925 30.9 Wyoming 126 21.6 2,026 33.5 U.S. Total 84,767 26.8 Missouri Created from data from the National Center for Health Statistics.169, A14 Mortality and Morbidity 27 table 4 U.S. Annual Alzheimer’s Death Rate (per 100,000) by Age Age 20002001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 45-54 0.2 0.2 0.1 0.2 0.2 0.2 0.2 0.2 0.2 0.2 0.3 0.2 0.2 0.2 55-64 2.0 2.1 1.9 2.0 1.8 2.1 2.1 2.2 2.2 2.0 2.1 2.2 2.2 2.2 65-74 18.7 18.6 19.6 20.7 19.5 20.2 19.9 20.2 21.1 19.4 19.8 19.2 17.9 18.1 75-84 139.6 147.2 157.7 164.1 168.5 177.0 175.0 175.8 192.5 179.1 184.5 183.9 175.4 171.6 85+ 667.7 725.4 790.9 846.8 875.3 935.5 923.4 928.7 1,002.2 945.3 987.1 967.1 936.1 929.5 Created from data from the National Center for Health Statistics.169 Alzheimer’s Disease Death Rates As shown in Figure 6, the rate of deaths attributed to age 80 is expected for 75 percent of people with Alzheimer’s has risen substantially since 2000.169 Alzheimer’s compared with only 4 percent of the Table 4 shows that the rate of death from Alzheimer’s general population.181 In all, an estimated two-thirds of increases dramatically with age, especially after those who die of dementia do so in nursing homes, age 65.169 The increase in the Alzheimer’s death rate compared with 20 percent of people with cancer and over time has disproportionately affected the 28 percent of people dying from all other conditions.189 oldest-old.182 Between 2000 and 2013, the death rate from Alzheimer’s did not increase for people age 65 to Burden of Alzheimer’s Disease 74, but increased 23 percent for people age 75 to 84, The long duration of illness before death contributes and 39 percent for people age 85 and older. significantly to the public health impact of Alzheimer’s Duration of Illness from Diagnosis to Death disease because much of that time is spent in a state of disability and dependence. Scientists have developed methods to measure and compare the burden of Studies indicate that people age 65 and older survive an different diseases on a population in a way that takes average of 4 to 8 years after a diagnosis of Alzheimer’s into account both the number of years of life lost due disease, yet some live as long as 20 years with to that disease as well as the number of healthy years Alzheimer’s.183-188 This reflects the slow, insidious of life lost by virtue of being in a state of disability. progression of Alzheimer’s. On average, a person with These measures indicate that Alzheimer’s is a very Alzheimer’s disease will spend more years (40 percent burdensome disease and that the burden of Alzheimer’s of the total number of years with Alzheimer’s) in the has increased more dramatically in the United States most severe stage of the disease than in any other than other diseases in recent years. The primary stage. measure of disease burden is called disability-adjusted 181 Much of this time will be spent in a nursing home. Exemplifying this, nursing home admission by 28 life-years (DALYs), which is the sum of the number of Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. figure 6 U.S. Annual Alzheimer’s Death Rate (per 100,000) by Year 30 27.1 25 20 15 17.6 18.9 21.9 22.5 2003 2004 24.2 24.3 24.8 2005 2006 2007 25.8 27.0 27.3 26.6 26.8 2012 2013 20.5 10 5 0 2000 2001 2002 2008 2009 2010 2011 Created from data from the National Center for Health Statistics.169 years of life lost due to premature mortality and the number of years lived with disability. Using this measure, Alzheimer’s rose from the 25th most burdensome disease in the United States in 1990 to the 12th in 2010. No other disease or condition increased as much.190 In terms of years of life lost, Alzheimer’s disease rose from 32nd to 9th, the largest increase for any disease. In terms of years lived with disability, Alzheimer’s disease went from ranking 17th to 12th; only kidney disease equaled Alzheimer’s in as high a jump in rank. Taken together, the numbers in this section indicate that not only is Alzheimer’s disease responsible for the deaths of more and more Americans, the disease is also contributing to more and more cases of poor health and disability in the United States. Mortality and Morbidity 29 Caregiving In 2014, Americans provided nearly billion hours of unpaid care to people with Alzheimer’s disease and other dementias. 30 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Caregiving refers to attending to another individual’s health needs. Caregiving often includes assistance with one or more activities of daily living (ADLs) such as bathing and dressing.191-192 More than 15 million Americans provide unpaid care for people with Alzheimer’s disease and other dementias. A15 United States.197-200, A16 Approximately two-thirds of caregivers are women197-198, A16 and 34 percent are age 65 or older. A16 Over two-thirds of caregivers are married, living with a partner or in a long-term relationship.198, A16 More than two-thirds of caregivers are non-Hispanic white,198, A16 while 10 percent are African-American, 8 percent are Hispanic, and 5 percent are Asian. A16 Over 40 percent of dementia caregivers have a college degree or greater education.198, A16 Forty-one percent of caregivers have a household income of $50,000 or less. A16 Over half of primary caregivers of people with dementia (individuals who indicate having the most responsibility for helping their relatives; 55 percent) take Unpaid Caregivers Eighty-five percent of unpaid help provided to older adults in the United States is from family members.193 Friends may provide unpaid caregiving as well. In 2014, caregivers of people with Alzheimer’s and other dementias provided an estimated 17.9 billion hours of informal (that is, unpaid) assistance, a contribution to care of parents. 200 Most caregivers either live with the care recipient (27 percent) or live within 20 minutes of the care recipient (46 percent). A16 It is estimated that 250,000 children and young adults between ages 8 and 18 provide help to someone with Alzheimer’s disease or another dementia. 201 the nation valued at $217.7 billion. This is approximately Ethnic and Racial Diversity in Caregiving 46 percent of the net value of Walmart sales in 2013 Among caregivers of people with Alzheimer’s and other ($473.1 billion)194 and nearly eight times the total revenue dementias, the National Alliance for Caregiving (NAC) of McDonald’s in 2013 ($28.1 billion).195 According to a and AARP found the following in 2009:202 recent report,196 the value of informal care (not including •Fifty-four percent of non-Hispanic white caregivers caregivers’ out-of-pocket costs) was nearly equal to the assist a parent, compared with 38 percent of costs of direct medical and long-term care of dementia. individuals from other racial/ethnic groups. The three primary reasons caregivers decide to provide •On average, Hispanic and African-American care and assistance to a person with Alzheimer’s caregivers spend more time caregiving (approximately disease are (1) the desire to keep a family member/friend 30 hours per week) than non-Hispanic white at home (65 percent), (2) proximity to the person with caregivers (20 hours per week) and Asian-American dementia (48 percent) and (3) the caregiver’s perceived caregivers (16 hours per week). obligation as a spouse or partner (38 percent). A16 •Hispanic (45 percent) and African-American (57 percent) caregivers are more likely to experience Who Are the Caregivers? high burden from caregiving than non-Hispanic white Several sources have examined the demographic caregivers (33 percent) and Asian-American background of family caregivers of people with caregivers (30 percent). Alzheimer’s disease and other dementias in the Caregiving 31 Sandwich Generation Caregivers dementia.197 Sandwich generation caregivers indicate Traditionally, the term “sandwich generation caregiver” lower quality of life and diminished health behaviors has referred to a middle-aged person who (for example, less likely to choose foods based on simultaneously cares for dependent minor children and health values; less likely to use seat belts; less likely to aging parents. The phenomenon of sandwich exercise) compared with non-sandwich generation generation caregiving has received a good deal of caregivers or non-caregivers. 208-209 attention in recent years as it has been argued that demographic changes (such as parents of dependent Caregiving Tasks minors being older than in the past along with the aging The care provided to people with Alzheimer’s disease of the U.S. population) have led to increases in the and other dementias is wide-ranging and in some number of sandwich generation caregivers. instances all-encompassing. Table 5 summarizes some 203-205 National surveys have found that 23 percent of Alzheimer’s disease and dementia caregivers lived with children under the age of 18. A16 Other studies have found that sandwich generation caregivers are present in 8 to 13 percent of households in the United States.206-207 It is not clear what proportion of care recipients in these studies had Alzheimer’s disease or another dementia, but in other studies of sandwich generation caregivers about one-third of elderly care recipients have Alzheimer’s disease or another of the most common types of dementia care provided. Though the care provided by family members of people with Alzheimer’s disease and other dementias is somewhat similar to the help provided by caregivers of people with other conditions, dementia caregivers tend to provide more extensive assistance. Family caregivers of people with dementia are more likely than caregivers of other older people to assist with any ADL (Figure 7). More than half of dementia caregivers report table 5 Dementia Caregiving Tasks Help with instrumental activities of daily living (IADLs), such as household chores, shopping, preparing meals, providing transportation, arranging for doctor’s appointments, managing finances and legal affairs and answering the telephone. Helping the person take medications correctly, either via reminders or direct administration of medications. Helping the person adhere to treatment recommendations for dementia or other medical conditions. Assisting with personal activities of daily living (ADLs), such as bathing, dressing, grooming, feeding and helping the person walk, transfer from bed to chair, use the toilet and manage incontinence. Managing behavioral symptoms of the disease such as aggressive behavior, wandering, depressive mood, agitation, anxiety, repetitive activity and nighttime disturbances. Finding and using support services such as support groups and adult day service programs. Making arrangements for paid in-home, nursing home or assisted living care. Hiring and supervising others who provide care. Assuming additional responsibilities that are not necessarily specific tasks, such as: • Providing overall management of getting through the day. • Addressing family issues related to caring for a relative with Alzheimer’s disease, including communication with other family members about care plans, decision-making and arrangements for respite for the main caregiver. 32 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. figure 7 Proportion of Caregivers of People with Alzheimer’s and Other Dementias versus Caregivers of Other Older People Who Provide Help with Specific Activities of Daily Living, United States, 2009 Caregivers of people with Alzheimer’s and other dementias Caregivers of other older people Percentage 60 50 40 54% 42% 40% 30 32% 31% 31% 31% 31% 26% 20 23% 16% 14% 10 0 Activity Getting in and Dressing out of bed Getting to and from the toilet Bathing Managing incontinence and diapers Feeding Created from data from the National Alliance for Caregiving and AARP. 202 providing help with getting in and out of bed, and In addition to assisting with ADLs, almost two-thirds about one-third provide help with getting to and from of caregivers of people with Alzheimer’s and other the toilet, bathing, managing incontinence and feeding. dementias advocate for their care recipient with These findings are consistent with the heightened government agencies and service providers (64 percent), degree of dependency experienced by many people and nearly half arrange and supervise paid caregivers with Alzheimer’s disease and other dementias. Fewer from community agencies (46 percent). By contrast, caregivers of other older people report providing help caregivers of other older adults are less likely to with each of these types of care. advocate for their family member (50 percent) and 202 Data from the 2011 National Survey of Caregiving (NSOC) indicated that supervise community-based care (33 percent). 202 caregivers of people with dementia210 are more likely Caregivers of people with dementia are more likely to than caregivers of people without dementia to provide coordinate health care for the care recipient compared help with self-care and mobility (85 percent versus with caregivers of people without dementia (86 percent 71 percent) and health or medical care (63 percent versus 72 percent).197 Caring for a person with dementia versus 52 percent).197,211 Individuals with dementia are also means managing symptoms that family caregivers also more likely than those without dementia to rely on of people with other diseases may not face, such as multiple unpaid caregivers; 39 percent of people with neuropsychiatric symptoms and severe behavioral dementia rely on three or more caregivers, whereas problems. Family caregivers often lack the information 30 percent of people without dementia rely on three or resources necessary to manage the increasing or more unpaid individuals.197 complexity of medication regimens for people with dementia. 212 Caregiving 33 figure 8 Proportion of Alzheimer’s and Dementia Caregivers Versus Caregivers of Other Older People by Duration of Caregiving, United States, 2009 Caregivers of people with Alzheimer’s and other dementias Caregivers of other older people Percentage 50 45 43% 40 35 34% 30 33% 32% 28% 25 20 23% 15 10 5 2% 0 Duration 4% Occasionally Less than 1 year 1– 4 years 5+ years Created from data from the National Alliance for Caregiving and AARP. 202 When a person with Alzheimer’s or another dementia placement, while husbands are more likely than other moves to an assisted living residence or nursing home, family caregivers to indicate persistent depression up to the help provided by his or her family caregiver usually a year following a relative’s admission to a residential changes from the comprehensive care summarized in care facility. 216 Table 5 (see page 32) to providing emotional support, interacting with facility staff and advocating for Duration of Caregiving appropriate care. However, some family caregivers Eighty-six percent of dementia caregivers have continue to help with bathing, dressing and other provided care and assistance for at least the past year, ADLs. according to the 2014 Alzheimer’s Association Women 213-215 Admitting a relative to a residential care facility has mixed effects on the emotional and and Alzheimer’s Poll. A16 Caregivers of people with psychological well-being of family caregivers. Some Alzheimer’s and other dementias provide care for a studies suggest that distress remains unchanged or longer time, on average, than caregivers of older adults even increases after a relative is admitted to a with other conditions. As shown in Figure 8, 43 percent residential care facility, but other studies have found of caregivers of people with Alzheimer’s and other that distress declines significantly after admission. dementias provided care for 1 to 4 years compared 215-217 The relationship between the caregiver and person with 33 percent of caregivers of people without with dementia may explain these discrepancies. dementia. Similarly, 32 percent of dementia caregivers For example, husbands, wives and daughters are provide care for 5 years or more compared with significantly more likely than other family caregivers to 28 percent of caregivers of people without dementia. 202 indicate persistent burden up to 12 months following 34 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Hours of Unpaid Care and Economic Value of Caregiving communicate effectively. Family caregivers must often In 2014, the 15.7 million family and other unpaid personality and behavior of a person with Alzheimer’s caregivers of people with Alzheimer’s disease and are affected as well, and these changes are often other dementias provided an estimated 17.9 billion among the most challenging for family caregivers. 218 hours of unpaid care. This number represents an Individuals with Alzheimer’s also require increasing average of 21.9 hours of care per caregiver per week, or levels of supervision and personal care as the disease 1,139 hours of care per caregiver per year. progresses. As symptoms worsen with the progression help people with Alzheimer’s manage these issues. The A17 With this care valued at $12.17 per hour, A18 the estimated of a relative’s dementia, the care required of family economic value of care provided by family and other members can result in increased emotional stress and unpaid caregivers of people with dementia was depression; new or exacerbated health problems; and $217.7 billion in 2014. Table 6 (see pages 36-37) shows depleted income and finances due in part to disruptions the total hours of unpaid care as well as the value of in employment. 219-224, A16 The intimacy and history of care provided by family and other unpaid caregivers for experiences and memories that are often part of the the United States and each state. Unpaid caregivers of relationship between a caregiver and care recipient may people with Alzheimer’s and other dementias provided also be threatened due to the memory loss, functional care valued at more than $1 billion in each of 39 states. impairment and psychiatric/behavioral disturbances that Unpaid caregivers in each of the four most populous can accompany the progression of Alzheimer’s disease. states — California, Florida, New York and Texas — Caregiver Emotional Well-Being provided care valued at more than $14 billion. Although caregivers report some positive feelings Additional research is needed to estimate the future about caregiving such as family togetherness and the value of family care for people with Alzheimer’s disease satisfaction of helping others,225, A16 they also report high as the U.S. population continues to age. levels of stress when providing care: Caregivers of people with dementia report providing •Based on a Level of Care Index that combined the 27 hours’ more care per month on average (92 hours number of hours of care and the number of ADL tasks versus 65 hours) than caregivers of people without performed by the caregiver, fewer dementia dementia.197 Other studies suggest that primary family caregivers in the 2009 NAC/AARP survey were caregivers provide particularly extensive amounts of classified in the lowest level of burden than care to people who have dementia. For example, a 2011 caregivers of people without dementia (16 percent report found that primary family caregivers of people versus 31 percent, respectively). 202 with dementia reported spending an average of 9 hours •Approximately 18 percent of caregivers of people per day providing help to their relatives. 200 In addition, with dementia, in contrast to only 6 percent of many caregivers of people with Alzheimer’s disease or caregivers of people without dementia, indicate another dementia provide help alone. Forty-one percent substantial negative aspects of caregiving.197 of dementia caregivers in the 2014 Alzheimer’s •Compared with caregivers of people without Association poll reported that no one else provided dementia, twice as many caregivers of people with unpaid assistance. A16 dementia indicate substantial financial, emotional and Impact of Alzheimer’s Disease Caregiving Caring for a person with Alzheimer’s or another dementia poses special challenges. For example, people with Alzheimer’s disease experience losses in judgment, orientation and the ability to understand and physical difficulties.197 •Fifty-nine percent of family caregivers of people with Alzheimer’s and other dementias rated the emotional stress of caregiving as high or very high (Figure 9, see page 38). A16 Caregiving 35 table 6 Number of Alzheimer’s and Dementia (AD/D) Caregivers, Hours of Unpaid Care, Economic Value of Unpaid Care and Higher Health Care Costs of Caregivers by State, 2014* AD/D Caregivers State (in thousands) Alabama Value of Unpaid Care (in millions of dollars) Higher Health Care Costs of Caregivers (in millions of dollars)† 301 342 $4,166 $171 Alaska 33 38 $458 $27 Arizona 314 357 $4,345 $155 Arkansas 174 198 $2,410 $97 California 1,573 1,791 $21,795 $895 Colorado 234 266 $3,243 $128 Connecticut 177 201 $2,450 $139 Delaware 52 60 $725 $40 District of Columbia 27 31 $378 $26 1,058 1,205 $14,669 $688 Georgia 506 576 $7,015 $251 Hawaii 65 74 $901 $41 Idaho 78 89 $1,084 $40 Illinois 589 671 $8,163 $362 Indiana 332 379 $4,608 $201 Iowa 134 152 $1,853 $84 Kansas 150 171 $2,075 $92 Kentucky 269 306 $3,725 $161 Louisiana 230 262 $3,186 $142 68 78 $946 $53 Maryland 289 329 $4,001 $197 Massachusetts 329 374 $4,554 $277 Michigan 508 578 $7,035 $305 Minnesota 248 282 $3,430 $167 Mississippi 205 234 $2,846 $122 Missouri 312 355 $4,326 $198 Florida Maine 36 Hours of Unpaid Care (in millions) Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. table 6 (cont.) Number of Alzheimer’s and Dementia (AD/D) Caregivers, Hours of Unpaid Care, Economic Value of Unpaid Care and Higher Health Care Costs of Caregivers by State, 2014* AD/D Caregivers State (in thousands) Hours of Unpaid Care (in millions) Value of Unpaid Care (in millions of dollars) Higher Health Care Costs of Caregivers (in millions of dollars)† Montana 48 55 $668 $29 Nebraska 81 92 $1,117 $52 140 159 $1,937 $73 65 74 $905 $47 New Jersey 447 509 $6,189 $308 New Mexico 106 121 $1,467 $64 1,017 1,158 $14,091 $771 448 510 $6,208 $263 30 34 $414 $21 Ohio 594 676 $8,229 $382 Oklahoma 220 250 $3,046 $130 Oregon 175 199 $2,422 $105 Pennsylvania 671 765 $9,304 $472 Rhode Island 53 60 $731 $40 295 336 $4,092 $169 37 42 $514 $24 422 480 $5,847 $245 1,331 1,516 $18,446 $716 142 162 $1,969 $65 Vermont 30 34 $413 $21 Virginia 452 514 $6,259 $258 Washington 324 369 $4,485 $200 West Virginia 108 123 $1,499 $75 Wisconsin 191 218 $2,650 $127 Wyoming 28 32 $384 $18 15,706 17,886 $217,670 $9,733 Nevada New Hampshire New York North Carolina North Dakota South Carolina South Dakota Tennessee Texas Utah U.S. Totals *State totals may not add up to the U.S. total due to rounding. Created from data from the 2009 BRFSS, U.S. Census Bureau, Centers for Medicare and Medicaid Services, National Alliance for Caregiving, AARP and U.S. Department of Labor. A13, A15, A16, A17 † Higher health care costs are the dollar amount difference between the weighted per capita personal health care spending of caregivers and non-caregivers in each state. A19 Caregiving 37 •Many family caregivers report “a good amount” to “a great deal” of caregiving strain concerning financial issues (47 percent). A16 •Approximately 40 percent of family caregivers of people with dementia suffer from depression, compared with 5 to 17 percent of non-caregivers of similar ages.223, 226-229 Rates of depression increase with the severity of cognitive impairment of the figure 9 Proportion of Alzheimer’s and Dementia Caregivers Who Report High or Very High Emotional and Physical Stress Due to Caregiving Percentage High to very high Not high to somewhat high 80 60 person with dementia. 230-231 •In the 2009 NAC/AARP survey, caregivers most likely 40 41% to indicate stress were women, older, residing with the care recipient, and white or Hispanic. 202 •According to the 2014 Alzheimer’s Association poll, 62% 59% 38% 20 0 respondents often believed they had no choice in Stress taking on the role of caregiver. A16 Emotional stress of caregiving Physical stress of caregiving •The 2014 Alzheimer’s Association poll found that women with children under age 18 felt that caregiving Created from data from the Alzheimer’s Association.A16 for someone with Alzheimer’s disease was more challenging than caring for children (53 percent). A16 •When caregivers report being stressed because of Caregiver Physical Health the impaired person’s behavioral symptoms, it For some caregivers, the demands of caregiving may increases the chance that they will place the care cause declines in their own health. Evidence suggests recipient in a nursing home. 202,232 that the stress of dementia care provision increases •Seventy-three percent of family caregivers of people caregivers’ susceptibility to disease and health with Alzheimer’s disease and other dementias agree complications.237 As shown in Figure 9, 38 percent of that it is neither “right nor wrong” when families Alzheimer’s and dementia caregivers indicate that the decide to place their family member in a nursing physical impact of caregiving was high to very high. A16 home. Yet many such caregivers experience feelings Sleep disturbances, which can occur frequently when of guilt, emotional upheaval and difficulties in caring for a relative with Alzheimer’s disease or another adapting to the admission transition (for example, dementia, have also been shown to negatively influence interacting with care staff to determine an appropriate family caregivers’ health. 238-239 care role for the family member). General Health 213,215,233-234, A16 •The demands of caregiving may intensify as people with dementia approach the end of life. 235 In the year before the person’s death, 59 percent of caregivers felt they were “on duty” 24 hours a day, and many felt that caregiving during this time was extremely stressful. 236 One study of end-of-life care found that 72 percent of family caregivers experienced relief when the person with Alzheimer’s disease or another dementia died. 236 Seventy-four percent of caregivers of people with Alzheimer’s disease and other dementias reported that they were “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver. A16 Dementia caregivers were more likely than non-caregivers to report that their health was fair or poor. 221 Dementia caregivers were also more likely than caregivers of other older people to say that caregiving made their health worse. 202,240 The 2009 and 2010 Behavioral Risk Factor Surveillance System (BRFSS) surveys found that 7 percent of dementia caregivers 38 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. say the greatest difficulty of caregiving is that it creates were depressed, had low functional status or had or aggravates their own health problems compared with behavioral disturbances.255 2 percent of other caregivers.198 According to 1998– 2010 bi-annual data from the Health and Retirement Survey, dementia caregivers were much more likely (41 percent increased odds) to become more frail from the period prior to the death of a spouse receiving care to the spouse’s death. 241 Other studies suggest that caregiving tasks have the positive effect of keeping older caregivers more physically active than non-caregivers. 242 Mortality The health of a person with dementia may also affect the caregiver’s risk of dying, although studies have reported mixed findings on this issue. In one study, caregivers of spouses who were hospitalized and had dementia in their medical records were more likely to die in the following year than caregivers whose spouses were hospitalized but did not have dementia, even after accounting for the age of caregivers. 256 However, other studies have found Physiological Changes The chronic stress of caregiving is associated with physiological changes that could increase the risk of developing chronic conditions. For example, a series of recent studies found that under certain circumstances some Alzheimer’s caregivers were more likely to have elevated biomarkers of cardiovascular disease risk and impaired kidney function risk than those who were not caregivers. 243-248 that caregivers in general have lower mortality rates than non-caregivers. 257-258 One study reported that higher levels of stress were associated with higher rates of mortality in both caregivers in general and non-caregivers. 258 These findings suggest that it is high stress, not caregiving per se, that increases the risk of mortality. Such results emphasize that dementia caregiving is a complex undertaking; simply providing care to someone with Alzheimer’s disease or another Caregivers of a spouse with Alzheimer’s or another dementia may not consistently result in stress or dementia are more likely than married non-caregivers to negative health problems for caregivers. Instead, the have physiological changes that may reflect declining stress of dementia caregiving is influenced by a number physical health, including high levels of stress of other factors, such as dementia severity, how hormones,249 reduced immune function,219,250 slow challenging caregivers perceive certain aspects of care to wound healing, be, available social support and caregiver personality. 251 and increased incidence of hypertension,252 coronary heart disease253 and impaired All of these factors are important to consider when endothelial function (the endothelium is the inner lining understanding the health impact of caring for a person of the blood vessels). Some of these changes may be with dementia. 259 associated with an increased risk of cardiovascular Caregiver Employment disease. 254 Overall, the literature is fairly consistent in Among caregivers of people with Alzheimer’s disease suggesting that the chronic stress of dementia care can and other dementias, 75 percent reported being have potentially negative influences on caregiver health. employed at any time since assuming care responsibilities. Eighty-one percent of Alzheimer’s Health Care The physical and emotional impact of dementia caregiving is estimated to have resulted in $9.7 billion in health care costs in the United States in 2014. A19 Table 6 (see pages 36-37) shows the estimated higher health care costs for Alzheimer’s and dementia caregivers in each state. In separate studies, hospitalization and emergency department visits were more likely for dementia caregivers who helped care recipients who caregivers under age 65 had been or were employed, while 35 percent age 65 and older had been or were employed. 202 Seventeen percent of dementia caregivers had to give up their jobs before or after assuming caregiving responsibilities. Among those who were employed at any time since they became caregivers, 9 percent ultimately quit their jobs to continue providing care. Fifty-four percent had to go in late or leave early, Caregiving 39 figure 10 Work-Related Changes Among Caregivers of People with Alzheimer’s Disease and Other Dementias Who Had Been Employed at Any Time Since They Began Caregiving Percentage 100 80 60 54% 40 20 15% 13% 13% Had to go from working full- to part-time Had to take a less demanding job 0 Effect Had to go in late/leave early/ take time off Had to take a leave of absence 9% Had to give up working entirely 8% Lost job benefits 8% 8% Saw work performance suffer to point of possible dismissal Chose early retirement 7% Had to turn down a promotion Created from data from the Alzheimer’s Association.A16 and 15 percent had to take a leave of absence. Other been found to be particularly effective: they (1) assist work-related challenges for dementia caregivers who caregivers over long periods; (2) approach dementia had been employed at any time since beginning care as an issue for the entire family; and (3) train caregiving are summarized in Figure 10. dementia caregivers in the management of behavioral A16 problems.262-265 Multicomponent approaches that Interventions Designed to Assist Caregivers combine individual and family counseling, education Strategies to support family caregivers of people with and other support over time appear especially beneficial Alzheimer’s disease have been developed and in helping caregivers manage changes that occur as the evaluated. The types and focus of these strategies care recipient’s dementia progresses. 266-267 Examples (often called “interventions”) are summarized in of successful multicomponent interventions are the Table 7.260-261 New York University Caregiver Intervention,268-270 the In general, interventions aim to improve the health and Resources for Enhancing Alzheimer’s Caregiver well-being of dementia caregivers by relieving the Health (REACH) II protocol,271 the Savvy Caregiver negative aspects of caregiving. Some also aim to delay program,272-274 the Reducing Disability in Alzheimer’s nursing home admission of the person with dementia. Disease intervention275 and the Skills2Care Program.276 Specific approaches used in various interventions Other multicomponent approaches that have recently include helping caregivers manage dementia-related shown promise include: (1) Partners in Dementia Care, symptoms, improving social support for caregivers, and a care coordination program that improves access to providing caregivers with respite from caregiving duties. needed services and strengthens the family support Three characteristics distinguish interventions that have 40 network 277 and (2) Acquiring New Skills While Enhancing Remaining Strengths (ANSWERS),278 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. table 7 Type and Focus of Caregiver Interventions Type of Intervention Description Case management Provides assessment, information, planning, referral, care coordination and/or advocacy for family caregivers. Psychoeducational Includes a structured program that provides information about the disease, resources and services, and about how to expand skills to effectively respond to symptoms of the disease (that is, cognitive impairment, behavioral symptoms and care-related needs). Includes lectures, discussions and written materials and is led by professionals with specialized training. Counseling Aims to resolve pre-existing personal problems that complicate caregiving to reduce conflicts between caregivers and care recipients and/or improve family functioning. Support groups Less structured than psychoeducational or therapeutic interventions, support groups provide caregivers the opportunity to share personal feelings and concerns to overcome feelings of social isolation. Respite Provides planned, temporary relief for the caregiver through the provision of substitute care; examples include adult day services and in-home or institutional respite for a certain number of weekly hours. Training of the person with dementia Includes memory clinic or similar programs aimed at improving the competence of the care recipient, which may also have a positive effect on caregiver outcomes. Psychotherapeutic approaches Involve the establishment of a therapeutic relationship between the caregiver and a professional therapist (for example, cognitive-behavioral therapy for caregivers to focus on identifying and modifying beliefs related to emotional distress, developing new behaviors to deal with caregiving demands, and fostering activities that can promote caregiver well-being). Multicomponent approaches Are characterized by intensive support strategies that combine multiple forms of interventions, such as education, support and respite into a single, long-term service (often provided for 12 months or more). Created from data from Sörensen et al. and Pinquart et al. 260-261 Caregiving 41 person with dementia to help manage symptoms such Caregiver Interventions and Their Effects on Care Recipients as memory loss. Other current, promising intervention Several reviews have sought to determine whether strategies include care coordination and approaches in caregiver interventions improve outcomes for care which people with early-stage Alzheimer’s disease and recipients who have Alzheimer’s disease or other their family caregivers are educated together. dementias. One recent review found that caregiver- a program that combines training for the caregiver and 279-290 Interventions for dementia caregivers that have demonstrated efficacy in randomized controlled evaluations have been gradually implemented in the community. 291-298 These implementation efforts are generally successful at improving how caregiver services are delivered, reaching a larger number of families and helping caregivers cope with their responsibilities. Because caregivers and the settings in which they provide care are diverse, more studies are needed to define which interventions are most effective for specific situations. 299 Improved tools to “personalize” services for caregivers to maximize their benefits is an emerging area of research. 265,300 More studies are also needed to explore the effectiveness of interventions in different racial, ethnic, socioeconomic and geographic settings.301-305 services for caregivers. behavioral or psychiatric problems in care recipients who have dementia. 309 Multicomponent interventions for dementia caregivers have also been shown to prevent or delay nursing home admission of the care recipient. 310-312 However, these conclusions are not uniform; a recent review that restricted its scope to randomized controlled evaluations found that caregiver interventions had no consistent effects on outcomes of care recipients who had Alzheimer’s disease or other dementias. 313 Paid Caregivers Direct-Care Workers for People with Alzheimer’s Disease and Other Dementias Direct-care workers, such as nurse aides, home health aides and personal and home care aides, provide most Growing evidence supports the effectiveness of respite 306 focused interventions are effective at reducing Recent studies of adult day of the long-term care services and supports for older adults (including those with Alzheimer’s disease and service programs suggest that use of these services other dementias). In nursing homes, nursing assistants can improve dementia caregivers’ emotional well-being make up the majority of staff who work with cognitively and can have beneficial effects on biological indicators impaired residents. 314-316 Nursing assistants help with of stress and health for caregivers. bathing, dressing, housekeeping, food preparation and 307-308 Although less consistent in their demonstrated benefits, in-person and other activities. Most nursing assistants are women, online support groups (such as alzconnected.org) have and they come from increasingly diverse ethnic, racial the potential to offer encouragement and enhance and international backgrounds. caregiver outcomes. Direct-care workers have difficult jobs, and they may not receive the training necessary to provide dementia care.315,317 One review found that direct-care workers received, on average, 75 hours of training and that this training included little focus on issues specific or pertinent to dementia care. 315 Turnover rates are high among direct-care workers, and recruitment and retention are persistent challenges. 318 Reviews have shown that staff training programs to improve the quality of dementia care in nursing homes have modest, positive benefits. 317 42 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Shortage of Geriatric Health Care Professionals in the United States people with dementia manage care transitions (for Professionals who may receive special training in caring and ensure the person with dementia’s access to for older adults include physicians, nurse practitioners, appropriate community-based services. Several registered nurses, social workers, pharmacists, evaluations have suggested that such approaches physician assistants, case workers and others. 318 It is have considerable potential for improving outcomes projected that the United States will need an additional for people with dementia and their family 3.5 million health care professionals by 2030 just to caregivers. 324-328 Current research is attempting to maintain the current ratio of health care professionals to determine the feasibility of these models beyond the the older population. 318 The need for health care specialty settings in which they currently operate. 329 example, a change in care provider or site of care), professionals trained in geriatrics is escalating, but few providers choose this career path. It is estimated that the United States has approximately half the number of certified geriatricians that it currently needs. 319 In 2010, there were 4,278 physicians practicing geriatric medicine in the United States. 320 An estimated 36,000 geriatricians will be required to adequately meet the needs of older adults in the United States by 2030. 318 Other health-related professions also have low numbers of geriatric specialists relative to the population’s needs. According to the Institute of Medicine, less than 1 percent of registered nurses, physician assistants and pharmacists identify themselves as specializing in geriatrics.318 Similarly, although 73 percent of social workers serve clients age 55 and older and about 8 percent are employed in long-term care settings, only 4 percent have formal certification in geriatric social work. 318 Although the complex care challenges of many people with dementia often require the simultaneous expertise of professionals trained in multiple care disciplines, there is a continuing need for interprofessional collaboration and education to enhance the overall care of people with dementia. 321-323 Ongoing efforts have attempted to integrate innovative care management practices alongside traditional primary care for people with dementia. Dementia care management often involves a skilled professional who serves as the care “manager” of the person with dementia. The care manager collaborates with primary care physicians or nurse practitioners to develop personalized care plans. These plans can provide support to family caregivers, help Caregiving 43 Use and Costs of Health Care, Long-Term Care and Hospice Total payments for health care, long-term care and hospice are estimated to be in 2015 for people with Alzheimer’s disease and other dementias. 44 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. The costs of health care, long-term care and hospice for individuals with Alzheimer’s disease and other dementias are substantial, and Alzheimer’s disease is one of the costliest chronic diseases to society.196 figure 11 Aggregate Cost of Care by Payment Source for Americans Age 65 and Older with Alzheimer‘s Disease and Other Dementias, 2015* Total cost: $226 Billion (B) • • • • Total payments in 2015 (in 2015 dollars) for all individuals with Alzheimer’s disease and other dementias are estimated at $226 billion (Figure 11). Medicare and Medicaid are expected to cover $153 billion, or 68 percent, of the total health care and long-term care payments for people with Alzheimer’s disease and other dementias. Out-of-pocket spending Medicare $113 B, 50% Medicaid $41 B, 18% Out of pocket $44 B, 19% Other $29 B, 13% is expected to be $44 billion, or 19 percent of total payments. A20 *Data are in 2015 dollars. TOTAL COST OF Health Care, Long-Term Care and Hospice Table 8 (see page 46) reports the average annual Created from The Lewin Model. A20 “Other” payment sources include private insurance, health maintenance organizations, other managed care organizations and uncompensated care. Totals for payment sources may not add to total cost due to rounding. per-person payments for health care and long-term care services for Medicare beneficiaries age 65 and older disease and other dementias ($11,021) were 19 times with and without Alzheimer’s disease and other as great as average Medicaid payments for Medicare dementias. Unless otherwise indicated, all costs in this beneficiaries without Alzheimer’s disease and other section are reported in 2014 dollars. dementias ($574) (Table 8).179 A21 Total per-person health care and long-term care payments in 2014 from all sources for Medicare beneficiaries with Alzheimer’s and other dementias were three times as great as payments for other Medicare beneficiaries in the same age group ($47,752 per person for those with dementia compared with $15,115 per person for those without dementia).179, A22 Despite these and other sources of financial assistance, individuals with Alzheimer’s disease and other dementias still incur high out-of-pocket costs. These costs are for Medicare and other health insurance premiums and for deductibles, copayments and services not covered by Medicare, Medicaid or additional sources of support. Medicare beneficiaries Twenty-nine percent of older individuals with age 65 and older with Alzheimer’s and other dementias Alzheimer’s disease and other dementias who have paid $10,202 out of pocket, on average, for health care Medicare also have Medicaid coverage, compared with and long-term care services not covered by other 11 percent of individuals without dementia. 179 Medicaid sources (Table 8).179 Average per-person out-of-pocket pays for nursing home and other long-term care payments were highest ($19,642 per person) for services for some people with very low income and individuals living in nursing homes and assisted living low assets, and the high use of these services by facilities and were almost six times as great as the people with dementia translates into high costs for the average per-person payments for individuals with Medicaid program. Average Medicaid payments per Alzheimer’s disease and other dementias living in person for Medicare beneficiaries with Alzheimer’s the community.179 Use and Costs of Health Care, Long-Term Care and Hospice 45 table 8 Average Annual Per-Person Payments for Health Care and Long-Term Care Services, Medicare Beneficiaries Age 65 and Older, with and without Alzheimer’s Disease and Other Dementias and by Place of Residence, in 2014 Dollars Beneficiaries with Alzheimer’s Disease and Other Dementias by Place of Residence Payment Source Overall Community-Dwelling Beneficiaries without Alzheimer’s Residential Facility Disease and Other Dementias Medicare $21,585 $19,223 $24,884 $8,191 Medicaid 11,021 242 26,086 574 297 427 117 335 Uncompensated HMO 1,083 1,681 247 1,579 Private insurance 2,463 2,707 2,122 1,657 986 178 2,115 156 10,202 3,449 19,642 2,487 Other payer Out of pocket Total* $47,75228,102 75,217 15,115 *Payments from sources do not equal total payments exactly due to the effect of population weighting. Payments for all beneficiaries with Alzheimer’s disease and other dementias include payments for community-dwelling and facility-dwelling beneficiaries. Created from unpublished data from the Medicare Current Beneficiary Survey for 2008.179 figure 12 Reasons for Hospitalization of Individuals with Alzheimer’s Disease: Percentage of Hospitalized Individuals by Admitting Diagnosis* Percentage 30 25 26% 20 15 17% 10 9% 5 6% 5% 0 Reasons for Hospitalization Syncope, fall and trauma Ischemic heart disease Gastrointestinal Pneumonia disease Delirium, mental status change *All hospitalizations for individuals with a clinical diagnosis of probable or possible Alzheimer’s disease were used to calculate percentages. The remaining 37 percent of hospitalizations were due to other reasons. Created from data from Rudolph et al. 331 46 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Recently, researchers evaluated the additional or changing dressings and administering tube feedings. 332 “incremental” health care and caregiving costs of There are 349 skilled nursing facility stays per 1,000 dementia (that is, the costs specifically attributed to beneficiaries with Alzheimer’s and other dementias dementia when comparing people with and without compared with 39 stays per 1,000 beneficiaries for dementia who have the same coexisting medical people without these conditions.179 conditions and demographic characteristics). 196,330 One group of researchers found that the incremental health care and nursing home costs for those with dementia was $28,501 per year in 2010 dollars ($31,864 in 2014 dollars).196, A21, A23 Use and Costs of Health Care Services •Home health care. Twenty-three percent of Medicare beneficiaries age 65 and older with Alzheimer’s disease and other dementias have at least one home health care visit during the year, compared with 10 percent of Medicare beneficiaries age 65 and older without Alzheimer’s and other dementias.153 People with Alzheimer’s disease and other dementias Differences in health care use between individuals with have more than three times as many hospital stays per and without dementia are most prominent for those year as other older people. residing in the community. Based on data from the 179 Moreover, the use of health care services for people with other serious Health and Retirement Study, community-residing medical conditions is strongly affected by the presence individuals with dementia were more likely to have a or absence of dementia. In particular, people with potentially preventable hospitalization, an emergency coronary artery disease, diabetes, chronic kidney department visit that was potentially avoidable, and disease, chronic obstructive pulmonary disease (COPD), an emergency department visit that resulted in a stroke or cancer who also have Alzheimer’s and other hospitalization. 333 For individuals residing in a nursing dementias have higher use and costs of health care home, there were no differences in the likelihood services than people with these medical conditions but of being hospitalized or having an emergency no coexisting dementia. department visit. Use of Health Care Services Preventable hospitalizations are one common measure Older people with Alzheimer’s disease and other dementias have more hospital stays, skilled nursing facility stays and home health care visits than other older people. •Hospital. There are 780 hospital stays per 1,000 of health care quality. Preventable hospitalizations are hospitalizations for conditions that could have been avoided with better access to or quality of preventive and primary care. Based on data from the 2006 to 2008 Health and Retirement Study and Medicare, preventable hospitalizations represented 25 percent of the total Medicare beneficiaries age 65 and older with hospitalizations for individuals with Alzheimer’s disease Alzheimer’s disease and other dementias compared and other dementias. 334 The proportion was substantially with 234 hospital stays per 1,000 Medicare higher, however, for African-Americans, Hispanics and beneficiaries age 65 and older without these individuals with low incomes. Hispanic older adults had conditions.179 The most common reasons for the highest proportion of preventable hospitalizations hospitalization of people with Alzheimer’s disease are (34 percent). Healthy People 2020, the U.S. Department syncope (fainting), fall and trauma (26 percent); of Health and Human Services’ initiative to achieve ischemic heart disease (17 percent); and 10-year goals for health promotion and disease gastrointestinal disease (9 percent) (Figure 12). 331 prevention, has set a target to reduce preventable •Skilled nursing facility. Skilled nursing facilities provide direct medical care that is performed or supervised by hospitalizations for people with Alzheimer’s disease and other dementias by 10 percent by 2020. 334 registered nurses, such as giving intravenous fluids, Use and Costs of Health Care, Long-Term Care and Hospice 47 Costs of Health Care Services With the exception of prescription medications, average per-person payments for health care services (hospital, physician and other medical provider, nursing home, skilled nursing facility, hospice and home health care) were higher for Medicare beneficiaries with Alzheimer’s disease and other dementias than for other Medicare beneficiaries in the same age group (Table 9).179 The fact that only payments for prescription drugs were lower for table 9 Average Annual Per-Person Payments for Health Care Services Provided to Medicare Beneficiaries Age 65 and Older with and without Alzheimer’s Disease and Other Dementias, in 2014 Dollars BeneficiariesBeneficiaries with Alzheimer’s without Alzheimer’s Disease and Disease and Service Other Dementias Other Dementias those with Alzheimer’s and other dementias underscores Inpatient hospital $11,370 $4,571 the lack of effective treatments available to those Medical provider* 6,306 4,181 with dementia. Skilled nursing facility 4,189 487 Use and Costs of Health Care Services for Individuals Newly Diagnosed with Alzheimer’s Disease Nursing home 19,442 864 Hospice 1,925 188 Individuals newly diagnosed with Alzheimer’s disease Home health 1,543 498 have higher health care use and costs in the year prior to Prescription medications** 2,889 2,945 diagnosis and in the 2 subsequent years after diagnosis than those who do not receive this diagnosis, according to a study of Medicare Advantage enrollees (that is, Medicare beneficiaries enrolled in a private Medicare health insurance plan). 335 Enrollees with a new diagnosis *“Medical provider” includes physician, other medical provider and laboratory services, and medical equipment and supplies. **Information on payments for prescription drugs is only available for people who were living in the community; that is, not in a nursing home or assisted living facility. Created from unpublished data from the Medicare Current Beneficiary Survey for 2008.179 of Alzheimer’s disease had $2,529 more in health care costs (medical and pharmacy) in the year prior to diagnosis, $10,126 more in costs in the year following diagnosis, and $6,251 more in costs in the second year following diagnosis. In another study of pre-diagnosis health care costs, Medicaid enrollees with Alzheimer’s disease had $6,204 more in health care costs, with $3,713 due to additional outpatient medical care and $1,612 in additional home care and adult day care services.336 While more work is needed to understand the underlying causes of increased use of health care services immediately prior to and after receiving a diagnosis of Alzheimer’s disease, it may be attributed to care for disability and injuries, such as falls, that might result from the early stage of the disease;337 treatments related to cognitive impairment or coexisting medical conditions; and costs of diagnostic procedures. 48 table 10 Specific Coexisting Medical Conditions Among Medicare Beneficiaries Age 65 and Older with Alzheimer’s Disease and Other Dementias, 2009 Coexisting Condition Percentage of Beneficiaries with Alzheimer’s Disease and Other Dementias Who Also Had Coexisting Medical Condition Coronary artery disease 30 Diabetes 29 Congestive heart failure 22 Chronic kidney disease 17 Chronic obstructive pulmonary disease 17 Stroke 14 Cancer 9 Created from unpublished data from the National 20% Sample Medicare Fee-for-Service Beneficiaries for 2009.153 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Impact of Alzheimer’s Disease and Other Dementias on Use and Costs of Health Care in People with Coexisting Medical Conditions Medicare beneficiaries with Alzheimer’s disease and other dementias are more likely than those without dementia to have other chronic conditions.153 Table 10 reports the dementias have more potentially avoidable hospitalizations for diabetes complications and hypertension, meaning that the hospitalizations could possibly be prevented through proactive care management in the outpatient setting. 338 proportion of people with Alzheimer’s disease and other Similarly, Medicare beneficiaries who have Alzheimer’s dementias who have certain coexisting medical and other dementias and a serious coexisting medical conditions. In 2009, 30 percent of Medicare beneficiaries condition have higher average per-person payments for age 65 and older with dementia also had coronary artery most health care services than Medicare beneficiaries disease, 29 percent also had diabetes, 22 percent also had who have the same medical condition without dementia. congestive heart failure, 17 percent also had chronic Table 11 (see page 50) shows the average per-person kidney disease and 17 percent also had COPD. Medicare payments for seven specific medical conditions 153 People with Alzheimer’s or other dementias and a serious coexisting medical condition (for example, congestive heart failure) are more likely to be hospitalized than people with the same coexisting medical condition but without dementia (Figure 13).153 Research has demonstrated that Medicare beneficiaries with Alzheimer’s disease and other among beneficiaries who have Alzheimer’s disease and other dementias and beneficiaries who do not have dementia.153 Medicare beneficiaries with dementia had higher average per-person payments in all categories except total Medicare and hospital care payments for individuals with congestive heart failure. figure 13 Hospital Stays per 1,000 Beneficiaries Age 65 and Older with Specified Coexisting Medical Conditions, with and without Alzheimer’s Disease and Other Dementias, 2009 Hospital stays With Alzheimer’s disease and other dementias Without Alzheimer’s disease and other dementias 1,200 1,000 800 1,042 1,002 948 801 998 897 876 835 776 753 600 592 656 477 474 400 200 0 Condition Chronic Congestive kidney heart failure disease Chronic obstructive pulmonary disease Coronary artery disease Stroke Diabetes Cancer Created from unpublished data from the National 20% Sample Medicare Fee-for-Service Beneficiaries for 2009.153 Use and Costs of Health Care, Long-Term Care and Hospice 49 table 11 Average Annual Per-Person Payments by Type of Service and Coexisting Medical Condition for Medicare Beneficiaries Age 65 and Older, with and without Alzheimer’s Disease and Other Dementias, 2009, in 2014 Dollars* Medical Condition by Alzheimer’s Selected Medical Condition Disease/Dementia by Alzheimer’s Disease/ (AD/D) Status Dementia (AD/D) Status Average Per-Person Medicare Payment Total Skilled Medicare Hospital Physician Nursing HomeHospice Payments Care Care Facility Care Health Care Care Coronary artery disease With AD/D 27,661 10,225 1,725 4,433 2,785 2,403 Without AD/D 17,157 7,347 1,319 1,351 1,199 350 Diabetes With AD/D 26,994 9,730 1,615 4,297 2,869 2,171 Without AD/D 14,920 5,997 1,136 1,228 1,137 246 Congestive heart failure With AD/D 26,509 11,613 1,780 4,915 2,916 3,014 Without AD/D 30,447 11,890 1,779 2,663 2,297 852 Chronic kidney disease With AD/D 32,633 12,817 1,910 4,945 2,722 2,621 Without AD/D 25,108 10,743 1,672 2,040 1,685 543 Chronic obstructive pulmonary disease With AD/D 30,007 10,914 1,818 4,845 2,888 2,714 Without AD/D 20,539 8,953 1,494 1,766 1,552 681 Stroke With AD/D 28,156 10,074 1,675 4,651 2,639 2,824 Without AD/D 20,214 7,809 1,425 2,384 1,936 668 Cancer With AD/D 25,910 9,057 1,573 3,728 2,274 2,959 Without AD/D 16,957 6,145 1,207 1,009 807 607 *This table does not include payments for all kinds of Medicare services, and as a result the average per-person payments for specific Medicare services do not sum to the total per-person Medicare payments. Created from unpublished data from the National 20% Sample Medicare Fee-for-Service Beneficiaries for 2009.153 50 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Use and Costs of Long-Term Care Services •Home care. According to state home care programs in An estimated 58 percent of older adults with Connecticut, Florida and Michigan, more than one-third Alzheimer’s disease and other dementias live in the (about 37 percent) of older people who receive community compared with 98 percent of older adults primarily non-medical home care services, such as without Alzheimer’s disease and other dementias. personal care and homemaker services, have cognitive Of those with dementia who live in the community, impairment consistent with dementia. 341-343 179 75 percent live with someone and the remaining •Adult day services. Thirty-two percent of individuals 25 percent live alone.179 People with Alzheimer’s using adult day services have Alzheimer’s disease or disease and other dementias generally receive more other dementias, 344 and 73 percent of adult day care from family members and other unpaid caregivers services programs offer specific programs for as their disease progresses. Many people with individuals with Alzheimer’s disease and other dementia also receive paid services at home; in adult dementias. 345 day centers, assisted living facilities or nursing homes; or in more than one of these settings at different times in the often long course of the disease. Given the high average costs of these services (assisted living, $42,000 per year, 339, A24 and nursing home care, $77,380 to $87,600 per year), 339, A24 individuals often deplete their income and assets and eventually qualify for Medicaid. Medicaid is the only public program that covers the long nursing home stays that most people with dementia require in the late stages of their illnesses. •Assisted living. Forty-two percent of residents in assisted living facilities (that is, housing that includes services to assist with everyday activities, such as medication management and meals) had Alzheimer’s disease and other dementias in 2010. 346 Forty percent of residents in residential care facilities, including assisted living facilities, have Alzheimer’s disease and other dementias. 347 Small residential care facilities (4 to 25 beds) have a larger proportion of residents with Alzheimer’s and other dementias than larger facilities (49 percent versus 41 percent in facilities with Use of Long-Term Care Services by Setting 26 to 50 beds and 38 percent in facilities with more Most people with Alzheimer’s disease and other than 50 beds). 347 Sixty-eight percent of residential care dementias who live at home receive unpaid help from facilities offer programs for residents with Alzheimer’s family members and friends, but some also receive paid disease and other dementias, and 68 percent use a home- and community-based services, such as standardized tool to screen residents for cognitive personal care and adult day care. A study of older impairment before or at admission. 348 people who needed help to perform 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.340 In addition, those who had cognitive impairment and received paid services used almost •Nursing home care. Of all Medicare beneficiaries age 65 and older with Alzheimer’s disease and other dementias, 31 percent live in a nursing home.179 Of all Medicare beneficiaries residing in a nursing home, 64 percent have Alzheimer’s disease and other dementias.179 twice as many hours of care monthly as those who did not have cognitive impairment. 340 People with Alzheimer’s and other dementias make up a large proportion of all elderly people who receive non-medical home care, adult day services and nursing home care. Use and Costs of Health Care, Long-Term Care and Hospice 51 table 12 Total Nursing Home Beds and Alzheimer’s Special Care Unit Beds by State, 2014 Alzheimer’s Special Care State Total Beds Unit Beds Alabama Alzheimer’s Beds as a Percentage of Total Beds Alzheimer’s Special Care State Total Beds Unit Beds 26,338 1,357 5.2 Montana 6,708 534 8.0 693 37 5.3 Nebraska 15,943 959 6.0 Arizona 16,586 936 5.6 Nevada 6,016 270 4.5 Arkansas 24,673 375 1.5 New Hampshire 7,491 710 9.5 California 120,968 2,556 2.1 New Jersey 52,310 1,213 2.3 Colorado 20,401 1,967 9.6 New Mexico 6,814 529 7.8 Connecticut 27,673 1,775 6.4 New York 117,140 3,791 3.2 4,876 408 8.4 North Carolina 44,849 1,557 3.5 District of Columbia 2,766 22 0.8 North Dakota 6,153 449 7.3 Alaska Delaware Florida 83,513 3,922 4.7 Ohio 90,689 3,751 4.1 Georgia 39,888 1,362 3.4 Oklahoma 28,832 499 1.7 Hawaii 4,213 106 2.5 Oregon 12,263 274 2.2 Idaho 5,951 182 3.1 Pennsylvania 88,261 6,332 7.2 Illinois 99,389 4,952 5.0 Rhode Island 8,717 1,202 13.8 Indiana 60,107 5,992 10.0 South Carolina 19,631 64 0.3 Iowa 34,213 1,617 4.7 South Dakota 6,963 532 7.6 Kansas 25,751 159 0.6 Tennessee 37,442 102 0.3 Kentucky 26,779 741 2.8 Texas 135,744 2,583 1.9 Louisiana 35,533 1,403 3.9 Utah 8,577 408 4.8 6,981 349 5.0 Vermont 3,174 249 7.8 Maryland 28,073 850 3.0 Virginia 32,453 1,206 3.7 Massachusetts 48,376 3,946 8.2 Washington 21,337 871 4.1 Michigan 46,594 789 1.7 West Virginia 10,888 235 2.2 Minnesota 30,362 2,379 7.8 Wisconsin 34,060 2,574 7.6 Mississippi 18,344 200 1.1 Wyoming 2,984 312 10.5 Missouri 55,294 4,154 7.5 U.S. Maine 1,699,77473,742 Created from data from the American Health Care Association. 349 52 Alzheimer’s Beds as a Percentage of Total Beds Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. 4.4 •Alzheimer’s special care units. An Alzheimer’s special and may reflect differences in the quality of care, care unit is a dedicated unit in a nursing home that has although more research is needed. Additionally, tailored services for individuals with Alzheimer’s and researchers found that feeding tube use was highest for other dementias. Nursing homes had a total of 73,742 people with dementia whose care was managed by a beds in Alzheimer’s special care units in 2014, subspecialist physician or both a subspecialist and a a decrease of 3 percent from the previous year. 349-350 general practitioner. Feeding tube use was lower among These Alzheimer’s special care unit beds accounted people with dementia whose care was managed by a for 71 percent of all special care unit beds and general practitioner. 354 4.4 percent of all nursing home beds. Rhode Island had the largest percentage of Alzheimer’s special care unit beds as a proportion of total beds (13.8 percent), while Tennessee had the smallest percentage of Alzheimer’s special care unit beds (0.3 percent) (Table 12).349 Research has also demonstrated a decrease in the proportion of individuals with Alzheimer’s disease who die in an acute care hospital, with end-of-life care shifting to home and nursing homes.355 Additionally, more than twice as many individuals with the disease were receiving hospice care at the time of death Recent research demonstrates that individuals with in 2009 than in 2000 (48 percent in 2009 versus dementia often move between a nursing facility, 20 percent in 2000). hospital and home, rather than remaining in a nursing facility. 351 In a longitudinal study of primary care patients with dementia, researchers found that those discharged from a nursing facility were nearly equally as likely to be discharged home (39 percent) as discharged to a hospital (44 percent). Individuals with dementia may also transition between a nursing facility and hospital or between a nursing facility, home and hospital, creating challenges for caregivers and providers to ensure that care is coordinated across settings. Other research has shown that nursing home residents frequently have burdensome transitions at the end of life, including admission to an intensive care unit in the last month of life, late enrollment in hospice and receipt of a feeding tube. 352 The number of care transitions for nursing home residents with advanced cognitive impairment varies substantially across geographic regions of the United States.353 Researchers also found that both the number of transitions between health care settings and the odds of having a feeding tube inserted at the end of life varied across the country. Furthermore, individuals with frequent transitions between health care settings were more likely to have feeding tubes at the end of life, even though feeding tube placement has little or no benefit. These differences across geographic regions were not explained by severity of illness, restrictions on the use of artificial hydration and nutrition, ethnicity or gender, Demands for nursing home services and services from long-term care hospitals are increasing. Long-term care hospitals serve individuals whose acute medical conditions require long-term care. Individuals are often transferred from the intensive care units of acute care hospitals to long-term care hospitals for medical care related to rehabilitation services, respiratory therapy and pain management. Despite this increasing demand, there have been a number of restrictions on adding facilities and increasing the number of beds in existing facilities. In addition, the Medicare, Medicaid and SCHIP (State Children’s Health Insurance Program) Extension Act of 2007 issued a 3-year moratorium on both the designation of new long-term care hospitals and increases in Medicare-certified beds for existing long-term care hospitals.356 This moratorium was in response to the need for Medicare to develop criteria for admitting beneficiaries to long-term care hospitals, where stays average more than 25 days. 357 The moratorium expired in late 2012. 356,358 In 2011, certificate-of-need programs (i.e., programs that require approval before building new facilities and/or expanding beds or other services) were in place in 37 states to regulate the number of nursing home beds, and a number of these states had implemented a certificateof-need moratorium to prevent growth in the number of beds and/or facilities. 359 Use and Costs of Health Care, Long-Term Care and Hospice 53 Costs of Long-Term Care Services Long-Term Care Insurance Costs are high for care provided at home or in an adult Enrollment in private long-term care insurance is more day center, assisted living facility or nursing home. The common for older adults with higher-than-average following estimates are for all users of these services. incomes. While only 3 percent of adults age 55 and •Home care. The median cost for a paid non-medical older had long-term care insurance in 2008, 19 percent home health aide is $20 per hour, or $160 for an with incomes greater than $100,000 had long-term eight-hour day. 339, A24 care insurance.362 The average annual long-term care •Adult day centers. The median cost of adult day services is $65 per day. 339, A24 Ninety-five percent of adult day centers provided care for people with Alzheimer’s disease and other dementias, and 2 percent of these centers charged an additional fee for these clients in 2012. 360 health363 and long-term care insurance policies funded only about 7 percent of total long-term care spending in 2011, representing $25 billion of the $363 billion in long-term care spending. 364 The private long-term care insurance market has consolidated since 2010. Five major insurance carriers either exited the market or •Assisted living facilities. The median cost for basic services in an assisted living facility is $3,500 per month, or $42,000 per year. insurance premium was $2,320 in 2010.362 Private substantially increased premiums since then, making policies unaffordable for many individuals. 365 339, A24 •Nursing homes. The average cost for a private room in a nursing home is $240 per day, or $87,600 per year. The average cost of a semi-private room in a nursing home is $212 per day, or $77,380 per year. 339, A24 Affordability of Long-Term Care Services Few individuals with Alzheimer’s disease and other dementias have sufficient long-term care insurance or can afford to pay out of pocket for long-term care services for as long as the services are needed. •Income and asset data are not available for people with Alzheimer’s and other dementias specifically, but 50 percent of Medicare beneficiaries had incomes of $23,983 or less, and 25 percent had incomes of $14,634 or less in 2013 (in 2014 dollars).361 •Fifty percent of Medicare beneficiaries had total Medicaid Costs Medicaid covers nursing home care and long-term care services in the community for individuals who meet program requirements for level of care, income and assets. To receive coverage, beneficiaries must have low incomes. Most nursing home residents who qualify for Medicaid must spend all of their Social Security income and any other monthly income, except for a very small personal needs allowance, to pay for nursing home care. Medicaid only makes up the difference if the nursing home resident cannot pay the full cost of care or has a financially dependent spouse. The federal and state governments 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 savings of $62,396 or less, 25 percent had savings of their own. In 2011, 55 percent of Medicaid spending on $11,483 or less, and 8 percent had no savings or were long-term care was allocated to institutional care, and in debt in 2013 (in 2014 dollars). Median savings were the remaining 45 percent was allocated to home and substantially lower for African-American and Hispanic community-based services.364 Medicare beneficiaries than white Medicare beneficiaries. 361 54 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. disease and other dementias is projected to be Programs to Reduce Avoidable Health Care and Nursing Home Use $41 billion in 2015 (in 2015 dollars). A20 Total per-person Recent research has demonstrated that two different Medicaid payments for Medicare beneficiaries age 65 types of programs have potential for reducing avoidable and older with Alzheimer’s and other dementias were health care and nursing home use, with one type of 19 times as great as Medicaid payments for other program focusing on the caregiver and the other type of Medicare beneficiaries. Much of the difference in program focusing on the care delivery team. Total Medicaid spending for people with Alzheimer’s payments for beneficiaries with Alzheimer’s and other dementias is due to the costs associated with long- Studies of the effectiveness of caregiver support term care (nursing homes and other residential care programs suggest that these programs have promise facilities, such as assisted living facilities) and the for reducing unnecessary emergency department visits greater percentage of people with dementia who are and hospitalizations and reducing transitions to eligible for Medicaid. Medicaid paid an average of residential care for individuals with Alzheimer’s disease $26,086 per person for Medicare beneficiaries with and other dementias. For example, in an evaluation of Alzheimer’s and other dementias living in a long-term the Dementia Care Services Program in North Dakota, care facility compared with $242 for those with the researchers found that hospitalizations, ambulance use, diagnosis living in the community and an average of emergency department visits and 911 calls decreased $574 for older adults without the diagnosis living in the significantly after caregivers began working with the community and long-term care facilities (Table 8, see program, which offered them care consultations, page 46). resources and referrals. 367 In another study, researchers 179 In a study of Medicaid beneficiaries with a diagnosis of Alzheimer’s disease, researchers found significant differences in the cost of care by race/ethnicity. 366 These results demonstrated that African-Americans had significantly higher cost of care than whites or Hispanics, primarily due to more inpatient care and greater severity of illness. These differences may be attributable to later-stage diagnosis, which may lead to higher levels of disability while receiving care; delays in accessing timely primary care; lack of care coordination; and duplication of services across providers. However, more research is needed to understand the reasons for this health care disparity. estimated the effects of applying the New York University Caregiver Intervention on health care costs and utilization in the state of Minnesota over 15 years. They determined that this intervention, which includes individual and family caregiver counseling sessions, an ongoing weekly caregiver support group and telephone counseling, would increase the number of individuals with dementia able to continue residing in the community by 5 percent. They also predicted that nearly 20 percent fewer individuals with dementia would die in residential care,368 and that the delayed and reduced number of transitions to residential care would lower health care costs in Minnesota by $996 million over the 15-year period. More research is needed to determine the extent to which these results apply to the broader population of individuals with Alzheimer’s disease and other dementias and their caregivers. Use and Costs of Health Care, Long-Term Care and Hospice 55 Additionally, collaborative care models — models that primary hospice diagnosis of Alzheimer’s disease include not only geriatricians, but also social workers, increased from 67 days in 1998 to 106 days in 2009.370 nurses and medical assistants — improve care The average length of stay for hospice beneficiaries coordination, thereby reducing health care costs with a primary diagnosis of non-Alzheimer’s dementia associated with hospitalizations, emergency increased from 57 days in 1998 to 92 days in 2009. 370 department visits and other outpatient visits. 369 Average per-person hospice care payments for An interprofessional memory care clinic was shown to beneficiaries with Alzheimer’s disease and other reduce per-person health care costs by $3,474 over a dementias were 10 times as great as for all other year for individuals with memory problems, compared Medicare beneficiaries ($1,925 per person compared with others whose care was overseen by a primary with $188 per person).179 care provider only.369 More than half of the cost savings was attributed to lower inpatient hospital costs. The Projections for the Future program was relatively low cost per person, with an Total annual payments for health care, long-term care average annual cost of $618. and hospice care for people with Alzheimer’s disease 369 and other dementias are projected to increase from Use and Costs of Hospice Care $226 billion in 2015 to more than $1 trillion in 2050 Hospice care provides medical care, pain management (in 2015 dollars). This dramatic rise includes a five-fold and emotional and spiritual support for people who are increase in government spending under Medicare and dying, including people with Alzheimer’s disease and Medicaid and a nearly five-fold increase in out-of- other dementias. Hospice care also provides emotional pocket spending. A20 and spiritual support and bereavement services for families of people who are dying. The main purpose of hospice is to allow individuals to die with dignity and without pain and other distressing symptoms that often accompany terminal illness. 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. In 2009, 6 percent of people admitted to hospices in the United States had a primary hospice diagnosis of Alzheimer’s disease (61,146 people). 370 An additional 11 percent of those admitted to hospices in the United States had a primary hospice diagnosis of non-Alzheimer’s dementia (119,872 people). 370 Hospice length of stay has increased over the past decade. The average length of stay for hospice beneficiaries with a 56 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Special Report: Disclosing a Diagnosis of Alzheimer’s Disease Fewer than of people with Alzheimer’s disease reported being told of their diagnosis. Special Report: Disclosing a Diagnosis of Alzheimer’s Disease 57 Should health care providers always tell their patients about a diagnosis? When, if ever, is it acceptable to keep the diagnosis from the patient, or to soften its impact by using less-than-clear explanations? principles of disclosure have now been elaborated and taught. Furthermore, the benefits of disclosure to patients have been recognized, and today nearly all health care providers have the usual policy of disclosing a cancer diagnosis to patients and accurately explaining prospects for the future. 376 The principles guiding disclosure of a cancer diagnosis A limited number of studies have explored whether people who had been diagnosed with Alzheimer’s disease or another dementia could recall being told their diagnosis.371-374 The studies often found that fewer than 50 percent of patients recalled being told their diagnosis. The factors affecting whether individuals are told their diagnosis are numerous and complex. Understanding and addressing these factors may apply equally to other diagnoses. But there is evidence that these principles are not always applied in practice, especially when the diagnosis involves conditions affecting the brain. As this report will show, it is still common for patients and their caregivers to not be made aware of a diagnosis of Alzheimer’s disease or dementia, or to be left with insufficient understanding of the true nature of the diagnosis. improve the care that patients receive, their ability to cope with the diagnosis, and their relationships with family members and caregivers. Historical Context In the 1950s and early 1960s, the issue of whether to tell cancer patients about their diagnosis was much discussed. In one study published in 1961, a group of 291 physicians who treated cancer patients were asked about their usual policies regarding disclosure of a cancer diagnosis to the patient. 375 Almost 9 in 10 (88 percent) responded that it was their usual policy to not tell patients that they had been diagnosed with The Dilemma’s Ancient Roots The ancient Greeks and Romans wrestled with the same dilemma. In one mythological tradition, Prometheus — the giver of fire — claims to have brought happiness to humankind by taking away foreknowledge of life’s duration. 377 Others disputed his claims of benevolence, asserting that unforeseen ills strike a heavier blow than expected ones. 378 cancer. Reasons for not telling were varied but generally focused on the desire to protect the patient from harm and preserve hope. Many physicians A Consensus for Disclosure thought that disclosing the diagnosis could cause the Health care providers routinely encounter the situation patient unnecessary anxiety or depression or lead to of having to deliver a frightening or upsetting diagnosis thoughts of suicide. However, there was very little to patients and perhaps to relatives, friends and loved evidence that such concerns were justified. ones. Like the practice of medicine itself, the ethical Physicians also had the common perception that principles guiding health care providers during such cancer treatments available in 1961 were ineffective, so there was no benefit to revealing the diagnosis. 375 The survey even revealed that many physicians at the time encounters have evolved during the last half century, and today there is general agreement that patients have the right to know and understand their diagnosis. opposed research into how patients react to such disclosures. Fortunately, much research was done and 58 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Several professional organizations working in the realm told their diagnosis. For example, not receiving the of brain health have issued statements regarding the diagnosis may deprive patients of the opportunity to disclosure of a diagnosis of Alzheimer’s disease or seek other medical opinions, plan for the future, and be another dementia. These include the Alzheimer’s involved in decisions that could impact their health care Association,379 Alzheimer Europe, 380 the American381 both now and in the future. Second, a person who and Canadian Medical Associations, does not have the mental capacity to understand their 382 the American Psychiatric Association,383 the European Federation of condition or treatment choices cannot give informed Neuroscience Societies consent to treatment. In such cases, decisions are 384 and other organizations. 385-386 Guidelines uniformly advocate revealing the diagnosis usually made by a person representing the patient’s to the person who has been diagnosed and doing best interests. Unfortunately, accurately assessing a so in clear language. Guidance from the Alzheimer’s patient’s ability to understand the diagnosis and Association, for example, advocates talking to the treatment options can be challenging for the health care affected person directly and delivering the news in provider. 388 In Alzheimer’s, those abilities may remain “plain but sensitive language.” consistent for an extended period or change from day 379 However, almost all such guidelines recognize that there may be situations to day, or even hour to hour. 389-390 Furthermore, when in which communicating the diagnosis to the patient decision-making responsibilities are given to a is not possible or practicable. Furthermore, some caregiver, the wishes of the caregiver may not match individuals may prefer to not be told, and that those of the person diagnosed. Several studies have preference must be taken into account. However, a shown, for example, that caregivers do not want care person with Alzheimer’s or another dementia — recipients to be told about a diagnosis of Alzheimer’s especially in the later stages of disease — should have disease or another dementia, even though the an informed and cognitively intact caregiver to ensure caregivers would want to be told if they were the their safety and appropriate care. ones being diagnosed. 391-392 The widespread agreement among professionals Truth-Telling that people with Alzheimer’s disease or another It was common in the past to withhold from patients dementia should be told of their diagnosis is founded the truth about the nature or severity of their illness. upon general principles of medical ethics, as well as One reason that has frequently been given for research into the benefits and potential harms of such withholding the truth is fear of causing distress or of disclosure. Two ethical principles that have perhaps the taking away hope.392 Research conducted in recent strongest bearing on this issue are respect for patient decades has dispelled many of these concerns, autonomy and truth-telling. showing that most people are able to cope with Respect for Patient Autonomy People have the right to make decisions about their medical care, including mental health care. 387 One aspect of this principle is that patients have the right to decide whether they want to be told their diagnosis. But there are caveats. First, decisions should be made from an informed perspective. 388 Patients should understand the potential benefits and drawbacks of each decision, including the decision of whether to be knowing about their condition and that there are many benefits to patients being fully informed. It is now widely recognized that truth-telling in medical diagnosis should be the standard approach, and that more harm than good often comes from not telling patients the truth.387 Withholding the truth can lead to loss of trust and cooperation among patients, family members and health care providers, and it can actually worsen the distress associated with the diagnosis. 386,393-395 Special Report: Disclosing a Diagnosis of Alzheimer’s Disease 59 Are People Being Told They Have indicated conditions. For example, a Medicare Alzheimer’s by Health Care Providers? beneficiary with a claim that indicated a diagnosis of Several studies have found that a large majority of physicians and other health care providers recognize the benefits of disclosing the diagnosis of Alzheimer’s disease or another dementia. 396 Despite these findings and the existence of guidelines strongly advocating disclosure of the diagnosis, health care providers vary widely in their practices regarding disclosure. 392,396-399 In fact, one of the goals of the federal government’s Healthy People 2020 program is to increase awareness Alzheimer’s disease would be asked, “Has a doctor ever told you that you have Alzheimer’s disease?” When the beneficiary was unavailable or unable to answer the question, a similar question was posed to a proxy respondent (often a family member or caregiver). Similarly, respondents with a claim related to breast cancer had that claim linked to their MCBS response as to whether a doctor had ever told them they had cancer. of the diagnosis of Alzheimer’s disease and other From these data, a disclosure rate was calculated to dementias among those who have been diagnosed or determine the percentage of respondents with a their caregivers. specified medical condition claim who indicated that 374 To explore recent disclosure practices, the Alzheimer’s Association commissioned an analysis of Medicare their doctor had told them they had that medical condition. A26 records and responses to the Medicare Current Disclosure rates for several common medical diagnoses Beneficiary Survey (MCBS), a continuous survey of are shown in Figure 14. A27 The disclosure rate for a nationally representative sample of Medicare Alzheimer’s disease was 45 percent. The disclosure rate beneficiaries living in the community or in long-term was even lower (27 percent) among those diagnosed care facilities. About 16,000 Medicare beneficiaries with other conditions that cause dementia. In contrast, complete the survey in any given year, and an individual disclosure rates were substantially higher for all other respondent typically participates in the survey for conditions studied except stroke. For example, among several consecutive years. The Centers for Medicare respondents with a Medicare claim for one of the four and Medicaid Services maintain a database of medical most common cancers (cancer of the breast, colon or claims submitted by health care providers for care rectum, lung and prostate), 93 percent reported being provided to all Medicare beneficiaries. told of their diagnosis. With the exception of stroke In the current analysis, de-identified claims records were analyzed for all people who participated in the MCBS during 2008, 2009 and 2010. These records (48 percent), disclosure rates were significantly lower for people with a diagnosis of Alzheimer’s disease or another dementia than for those with other diagnoses. A28 were used to identify individuals with at least one claim These data suggest that people with Alzheimer’s related to selected medical conditions, including disease or another dementia are much less likely to be Alzheimer’s disease, other forms of dementia, breast told about the diagnosis by their doctors or health care cancer, prostate cancer, lung cancer, colorectal providers than people with other common medical cancer, A25 stroke, cardiovascular disease other than conditions. This finding is consistent with several older stroke, Parkinson’s disease, diabetes, arthritis, high studies in which generally fewer than 50 percent of blood pressure and high cholesterol. (Claims were used patients with Alzheimer’s disease or dementia reported to indicate that the person’s health care provider had being told their diagnosis. 371-373,400 The results are also given care because of an indicated medical condition.) comparable with those of a more recent analysis by the Responses on the MCBS were then analyzed to U.S. Centers for Disease Control and Prevention, which determine whether the respondent indicated that they found that among people with Alzheimer’s disease or had been told by their doctor that they had the another dementia, they or their caregivers reported 60 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. figure 14 Disclosure Rates Among MCBS Respondents for the Indicated Medical Conditions 100 90 93% 96% 92% 91% 80 84% 70 90% 84% 81% 72% 72% 70% 60 50 40 48% 45% 30 27% 20 10 0 Other dementia Alzheimer’s disease Breast cancer Four most common cancers combined* Lung cancer Colorectal cancer Arthritis Parkinson’s Cardiovascular disease disease other than stroke High blood Diabetes Prostate High pressure cancer cholesterol Stroke *Breast, colorectal, lung and prostate cancer Created from unpublished data from the Medicare Current Beneficiary Survey for 2008, 2009 and 2010 and Medicare claims data. A27 Values shown are weighted to adjust the demographics of the responding sample population to match the demographics of the U.S. population. being aware of the diagnosis in only 35 percent another dementia were asked if a doctor had told them of cases. they had the disease, only about one in three 374 Previous studies have also explored the attitudes and practices of health care providers regarding the disclosure of a diagnosis of Alzheimer’s disease or dementia. Practices varied widely, with 38 percent to 96 percent of health care providers reporting that they usually disclose the diagnosis to the person with Alzheimer’s or dementia. 396 (33 percent) and one in five (18 percent), respectively, responded “Yes.” However, when the respondent was a proxy, they were more likely to report having been told that the beneficiary had been diagnosed with Alzheimer’s disease or another dementia (53 percent and 50 percent, respectively). The reason for this difference between beneficiary and proxy respondents is unclear; however, even in the best case scenario, the Many studies reported that health care providers were disclosure rate is barely more than half of cases. Other more likely to disclose the diagnosis to caregivers than diagnoses involving brain conditions, such as stroke and to affected persons, with 64 percent to 100 percent of Parkinson’s disease, also showed differences between health care providers reporting they disclose the beneficiaries and proxy respondents, although the diagnosis to caregivers. 396,400 The current analysis also differences were not as prominent as for Alzheimer’s explored this possibility. Figure 15 (see page 62) shows and other dementias. One complicating factor in these the responses according to whether the respondent results is that people with severe Alzheimer’s or another was the Medicare beneficiary or a proxy respondent. dementia are more likely to have proxy respondents Notably, when people with Alzheimer’s disease or Special Report: Disclosing a Diagnosis of Alzheimer’s Disease 61 than people in earlier stages. Thus, the greater for which the person needed assistance. Disclosure disclosure rates reported by proxy respondents rates consistently and significantly varied according to compared to beneficiary respondents could be due to only two of these factors — the number of ADLs and the presence of more severe disease in people who IADLs for which the person needed assistance required proxy respondents. (Figures 16 and 17). A29 In the current analysis commissioned by the Activities of daily living are those self-care activities that Alzheimer’s Association, several factors were explored are fundamental to day-to-day life, including walking, to determine if they influenced whether respondents getting into and out of bed, bathing, dressing, toileting reported that a doctor had told beneficiaries about their and eating. Instrumental ADLs are less fundamental to diagnosis of Alzheimer’s disease or another dementia. daily living, but still promote the ability to lead an Factors included the beneficiary’s age, sex, race or independent lifestyle. These include such activities as ethnicity, income level, education level, geographic housework, shopping, managing one’s own prescribed region, and the patient’s degree of impairment as medications, using the phone or other forms of assessed by the number of activities of daily living communication, and traveling within the community by (ADLs) and instrumental activities of daily living (IADLs) means such as driving or using public transit. figure 15 Disclosure Rates According to Whether the Respondent was a Beneficiary or a Caregiver Percentage Medicare beneficiary Caregiver 100 95% 90 88% 80 90% 86% 85% 82% 83% 82% 75% 70 73% 69% 60 71% 67% 58% 50 50% 45% 40 30 64% 62% 33% 20 18% 10 0 Other dementia Alzheimer’s disease Cardiovascular disease other than stroke Four most common cancers combined* Arthritis High blood pressure Stroke Parkinson’s disease High cholesterol Diabetes *Breast, colorectal, lung and prostate cancer Created from unpublished data from the Medicare Current Beneficiary Survey for 2008, 2009 and 2010 and Medicare claims data. A27 62 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. figure 17 figure 16 Disclosure Rates According to the Beneficiary’s Degree of Disability as Determined by the Number of ADLs for Which Assistance Was Needed Percentage 0 1 or 2 3 or more 0 Percentage 60 1 or 2 3 or more 60 59% 57% 50 50 44% 40 30 Disclosure Rates According to the Beneficiary’s Degree of Disability as Determined by the Number of IADLs for Which Assistance Was Needed 40 38% 35% 20 22% 10 11% 0 41% 30 20 32% 22% 19% 23% 10 0 Alzheimer’s disease Other dementia Alzheimer’s disease Other dementia Created from unpublished data from the Medicare Current Beneficiary Survey for 2008, 2009 and 2010 and Medicare claims data. A27 Created from unpublished data from the Medicare Current Beneficiary Survey for 2008, 2009 and 2010 and Medicare claims data. A27 As shown in Figures 16 and 17 for ADLs and IADLs, remember. 392 In other situations, there is sometimes respectively, when the beneficiary had more severe greater reluctance to reveal the diagnosis to someone disability, they or their proxy were more likely to report who has mild disease because of fear about how they being told of the diagnosis of Alzheimer’s disease or may react.400 dementia than when the beneficiary had less severe disability. These findings may indicate that health care providers are more likely to disclose the diagnosis when disability is more severe. It also may be a consequence of the fact that patients with more severe disability have had the disease longer and, therefore, have had more opportunities for the diagnosis to be disclosed to them. Previous studies have had conflicting results regarding whether patients with mild disease are more or less likely to be told their diagnosis than patients with more severe disease.401-403 In some situations, health care providers may choose not to directly disclose the diagnosis to people with severe disease because such patients are not likely to understand or Some Caveats One problem common to many studies of people with Alzheimer’s disease and other causes of dementia is that the diseases themselves may affect the ability of the affected people to remember being told their diagnosis. The current analysis argues against this explanation because disclosure rates were higher among beneficiaries with more severe disability (as measured by the number of ADLs and IADLs for which they needed assistance) than beneficiaries with less severe disability. In addition, even the proxy respondent numbers are very low — only about 50 percent — so it is unlikely that inability to recall disclosure is a significant factor. Special Report: Disclosing a Diagnosis of Alzheimer’s Disease 63 However, studies have found that a large percentage of Communication Difficulties. Many providers find people with dementia and even some caregivers were that disclosure of the diagnosis is one of the most unable to accurately recall the diagnosis soon after being challenging aspects of the diagnostic process, 398,405 told. 371,373 This underscores the need for continued efforts and there have been calls for educational programs by health care providers to ensure that the diagnosis is to improve the communication skills of providers to disclosed fully and carefully. Another problem is that some address this barrier.407-408 Providers may also be patients and even some caregivers may deny the concerned about whether disclosure of the diagnosis diagnosis or use denial as a way to cope with the will be understood and accepted by patients or diagnosis.404 Using only the data shown here, it is not caregivers. 371,373,392 possible to determine how many people may have reported not being told of their diagnosis because of denial or failure to accurately remember being told. Reasons Cited for Not Disclosing a Diagnosis MCBS data do not contain information about why people are not told of their diagnosis, but numerous studies have explored this issue from the perspectives of health care “Deliver the news in plain but sensitive language. This may be one of the most important things I ever hear. Please use language that I can understand and is sensitive to how this may make me feel.” — Alzheimer’s Association Early-Stage Advisor providers, caregivers and people with Alzheimer’s or another dementia. 376,397-398 Diagnostic Uncertainty. Health care providers frequently Fear of Causing Emotional Distress. This is one of the cite the complexity and uncertainty of the diagnosis as one reasons most commonly cited by family members and barrier to disclosure. health care providers for not disclosing the diagnosis or 125,376,405 A further complication is that diagnostic uncertainty may prompt referral to a specialist, for disguising its true nature. 392 However, studies that which itself may reveal the suspicion of Alzheimer’s or have explored this issue have found that few patients dementia. Ongoing efforts are focused on developing become depressed or have other long-term emotional educational programs for health care providers to improve problems because of the diagnosis.403,409-411 One study their diagnostic skills related to dementia.406 concluded that “physicians can provide a suspected Time Constraints and Lack of Support. Disclosing a diagnosis of Alzheimer’s or another dementia to a patient usually requires discussion of treatment options and support services, as well as education about the disease and what to expect. In many health care settings, providers have insufficient time to dedicate to such activities.405 Physicians and other health care providers have also noted that there are insufficient resources and services, including insufficient geriatric specialists and interdisciplinary teams, to provide patients and caregivers with the support needed at the time of diagnosis and afterward.407 64 dementia diagnosis without fear of prompting a catastrophic emotional reaction in most individuals with early-stage dementia.”412 Although there has been fear of suicide, the evidence indicates that it is very uncommon.413 Certainly, many patients experience initial shock, fear, distress, anger or other emotions, but true clinical depression is uncommon.395,411-412 In one study, only 6 percent of people diagnosed with Alzheimer’s disease or another dementia had clinical depression after 1 year, and those requiring treatment for depression were likely to have had a history of depression.395 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. Patient or Caregiver Wishes. Studies have shown that family members and health care providers and to avoid most patients want to be told if they have been discussing memory problems.415 Similarly, health care diagnosed with Alzheimer’s or another dementia, but providers may avoid the issue to spare the patient from some patients prefer not to be told. Although most a potentially stigmatizing diagnosis.415 caregivers support disclosure of the diagnosis to the patient,392,398 sometimes family members and Benefits of Disclosing a Diagnosis caregivers request that the patient not be told. 391-392 Several studies have found benefits to promptly and These requests usually stem from concern that the clearly explaining a diagnosis of dementia to the affected affected person will have a distressing emotional person and that person’s caregiver(s).376,397-398,409 response to the disclosure. Such requests can create a dilemma for providers, who must choose between respecting the patient’s autonomy or the wishes of caregivers and family members. Recent guidance generally advocates for holding the patient’s wishes as the highest priority.414 Better Diagnosis. When a patient understands their diagnosis, they have the opportunity to seek other medical opinions or the advice of specialists. The decision to withhold the diagnosis rests on the assumption that the diagnosis is correct. However, several reversible conditions can mimic dementia, Lack of Disease-Modifying Treatment. In one study, including depression, thyroid dysfunction, vitamin 25 percent of health care providers indicated that the deficiency and sleep disruption.416 Concern about having lack of treatments to modify the course of disease was to tell a patient that they have Alzheimer’s disease or a factor in choosing not to disclose a diagnosis to another dementia has been cited as one barrier to early patients. 392 However, informed patients and caregivers diagnosis.407 However, early diagnosis is associated with have better access to support services, are more able numerous benefits regardless of whether a treatment to participate in decision-making, and are better able to is available.416 adapt to the diagnosis. Better Decision-Making. When a patient is fully aware Stigma. The stigma experienced by some people of their diagnosis in the early stages of the disease, the diagnosed with Alzheimer’s disease or another patient is likely to be competent to understand options dementia is very real and can have detrimental and provide informed consent for current and future consequences.415 The stigma can vary widely between treatment options, including participation in research cultures. In one study conducted in Italy, some studies. In this way, the affected person can ensure that caregivers expressed the opinion that it was their desires and preferences are known, which may disrespectful for a health care provider to tell an older help them get better medical care and may contribute person that they had dementia. 386 In other cultural to advancing research toward better treatments.401,409 settings, patients expressed the sense that their friends Furthermore, when people are actively involved in afforded them less esteem after the diagnosis than decision-making about their care, they are more likely before. to follow a treatment plan and take steps to maintain 415 Patients may even attach a stigma to their own diagnosis, viewing a diagnosis of Alzheimer’s or another dementia differently than they would other “physical” conditions, even though the symptoms of Alzheimer’s and other dementias are manifestations of physical changes in the brain. As a consequence, it is common for patients to disguise their symptoms from their health. Better Medical Care. Studies have shown that when patients understand their diagnosis and are active participants in the decision-making process, the quality of care they receive is better than the care received by uninformed patients.417-419 Special Report: Disclosing a Diagnosis of Alzheimer’s Disease 65 Respect for the Patient’s Wishes. Although studies of the opinions and attitudes of patients with memory complaints are limited, the evidence indicates that most patients with mild dementia want to be told their diagnosis.395,398,420 “It’s unfortunate I waited a year to get a diagnosis because that meant an additional year of worry, concern and hiding my issues from family and friends. I was exhausting myself needlessly when getting a diagnosis actually simplified and improved my life greatly.” — Lou B., an individual living with Alzheimer’s disease “People can overprotect you, which robs you of your independence much quicker.” — Person with dementia 421 Planning for the Future. Prompt disclosure of the Knowing the diagnosis can also help caregivers prepare diagnosis allows patients and caregivers to get legal for and adapt to their role,403 which can reduce the and financial affairs in order with the full and informed perceived burden of caregiving.422 consent of the affected person. Access to Services. Knowing the diagnosis allows Understanding Changes. People affected by memory patients and caregivers to obtain information about loss and their caregivers are often aware that support services and make plans to use such services. something is not right. Knowing the diagnosis can help Accessing support services can help patients and them understand the symptoms they have felt or caregivers cope with the diagnosis and behavior observed. Among caregivers, knowledge of the changes that may accompany it.403,420 diagnosis and disease characteristics can help them better appreciate their loved one’s remaining capacities.403 Safety. Awareness of the diagnosis allows caregivers to take steps to ensure the affected person’s environment is safe and may help caregivers take Coping. Although the initial disclosure can be shocking, precautionary steps to determine when certain distressing or embarrassing, being aware of the activities (such as driving) may need to be curtailed. diagnosis gives patients and their caregivers the opportunity to express their fears and grief and to adopt positive strategies for coping with the diagnosis.403,409 Health care professionals are frequently concerned that patients and their caregivers will lose hope or become depressed when they learn of the diagnosis, but several studies have found these concerns to be Social Support. Knowing the diagnosis helps affected people focus on spending quality time with loved ones, garnering social support, appreciating what life has to offer and possibly traveling or fulfilling long-held wishes. The Process of Disclosure unwarranted or overemphasized. 396 Some patients and The analysis described in this report gives only a caregivers express relief when they finally know the snapshot of whether patients or caregivers report being diagnosis; it removes uncertainty and gives them the told by a doctor that they or a care recipient have opportunity to develop a plan of action.412 Some Alzheimer’s disease or another dementia. Just as caregivers have expressed that knowing the diagnosis important is how the diagnosis is disclosed and who allows them to blame the disease for changes in their should be involved. Although autonomy of the individual loved one’s behavior, rather than blaming the person. is important, those involved in the diagnostic process 66 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. are encouraged to include family and other current or approaches.396,414,424,426 These approaches represent a future caregivers during the disclosure process. distinct skill set, and providers have recognized the 414 Specific guidelines for an optimal diagnostic disclosure process are hindered by the lack of systematic studies and inconsistency of desired approaches of patients and caregivers. Some caregivers want to be told directly and others would like a gentler explanation.423 However, need for training programs to help them improve their skills in this setting.407-408 Efforts to improve how health care providers diagnose and manage Alzheimer’s disease and dementia include educational components designed to improve the disclosure process.406,414,420 the disclosure process should be ongoing to ensure understanding of the diagnosis and any needed changes in the follow-up plans for the patient and family.414,424 It has been shown that a contributor to the caregivers’ dissatisfaction with the disclosure process is lack of “Recognize that I am an individual and the way I experience this disease is unique.” — Alzheimer’s Association Early-Stage Advisor follow-up appointments and limited information about community services.423 To best provide diagnostic disclosure and appropriate connection to resources and services, providers need to consider the ability of the patient and caregiver to understand and cope with the diagnosis, the social and cultural context in which the patient lives,425 and whether Conclusion Despite widespread recognition of the benefits of clear and accurate disclosure, the practices of health care providers vary widely. In several studies, including the the patient has a strong support network.424 current analysis of Medicare records, fewer than half of Providers sometimes tell patients about the diagnosis dementia reported being told the diagnosis by their without using the words “Alzheimer’s” or “dementia,” perhaps in an attempt to soften the emotional impact of the diagnosis.376,398,409 But such lack of clarity can lead to confusion for both patients and family members 405 and may endanger trust between patients and the medical team.409 patients with a diagnosis of Alzheimer’s or another health care provider. Although caregivers were more likely to report disclosure, more than 45 percent did not report disclosure. Because of the complexity of the diagnostic and disclosure processes, varying preferences of patients and caregivers, and different support networks and coping mechanisms among patients, it is recognized that the disclosure process “Tell the truth. Even if you don’t have all the answers, be honest about what you do know and why you believe it to be so.” — Alzheimer’s Association Early-Stage Advisor should be managed in a way that respects each patient’s situation and that of their families and caregivers. Furthermore, health care providers have recognized the need for stronger support systems for themselves and for patients newly diagnosed with Alzheimer’s disease or another dementia. Using a standard approach for disclosing a diagnosis is not likely to be satisfactory because the same approach can be perceived by different patients and caregivers as either too blunt or too indirect. 396,398,426 Such difficulties Improvements in such systems have the potential to improve the care of individual patients and reduce the burden of disease on both caregivers and health care providers. have led to calls for the disclosure process to be managed in ways that are sensitive to each patient’s and family’s individual circumstances, using patient-centered Special Report: Disclosing a Diagnosis of Alzheimer’s Disease 67 End Notes A1. Number of Americans age 65 and older with Alzheimer’s disease for 2015 (prevalence of Alzheimer’s in 2015): The number 5.1 million is from published prevalence estimates based on incidence data from the Chicago Health and Aging Project (CHAP) and population estimates from the 2010 U.S. Census.120 A2. Proportion of Americans age 65 and older with Alzheimer’s disease: The 11 percent is calculated by dividing the estimated number of people age 65 and older with Alzheimer’s disease (5.1 million) by the U.S. population age 65 and older in 2015, as projected by the U.S. Census Bureau (47.7 million) = 11 percent. Eleven percent is the same as one in nine. (see 2012 National Population Projections: Summary Tables located at http://www.census.gov/population/ projections/data/national/2012/summarytables.html) A3. Percentage of total Alzheimer’s disease cases by age groups: Percentages for each age group are based on the estimated 200,000 under 65, plus the estimated numbers (in millions) for people 65 to 74 (0.8), 75 to 84 (2.3), and 85+ (2.0) based on prevalence estimates for each age group and incidence data from the Chicago Health and Aging Project (CHAP).120 A4. Differences between CHAP and ADAMS estimates for Alzheimer’s disease prevalence: The Aging, Demographics, and Memory Study (ADAMS) estimates the prevalence of Alzheimer’s disease to be lower than does the Chicago Health and Aging Project (CHAP), at 2.3 million Americans age 71 and older in 2002.122 [Note that the CHAP estimates referred to in this end note are from an earlier study using 2000 U.S. Census data.168] At a 2009 conference convened by the National Institute on Aging and the Alzheimer’s Association, researchers determined that this discrepancy was mainly due to two differences in diagnostic criteria: (1) a diagnosis of dementia in ADAMS required impairments in daily functioning and (2) people determined to have vascular dementia in ADAMS were not also counted as having Alzheimer’s, even if they exhibited clinical symptoms of Alzheimer’s.123 Because the more stringent threshold for dementia in ADAMS may miss people with mild Alzheimer’s disease and because clinicalpathologic studies have shown that mixed dementia due to both Alzheimer’s and vascular pathology in the brain is very common,6 the Association believes that the larger CHAP estimates may be a more relevant estimate of the burden of Alzheimer’s disease in the United States. A5. Number of women and men age 65 and older with Alzheimer’s disease in the United States: The estimates for the number of U.S. women (3.2 million) and men (1.9 million) age 65 and older with Alzheimer’s in 2013 is from unpublished data from the Chicago Health and Aging Project (CHAP). For analytic methods, see Hebert et al.120 A6. Prevalence of Alzheimer’s disease and other dementias in older whites, African-Americans and Hispanics: The statement that African-Americans are twice as likely and Hispanics one and one-half times as likely as whites to have Alzheimer’s disease and other dementias is the conclusion of an expert review of a number of multiracial and multi-ethnic data sources, as reported in detail in the Special Report of the Alzheimer’s Association’s 2010 Alzheimer’s Disease Facts and Figures. A7. State-by-state prevalence of Alzheimer’s disease: These state-bystate prevalence numbers are based on an analysis of incidence data from the Chicago Health and Aging Project (CHAP), projected to each state’s population, with adjustments for state-specific age, gender, years of education, race and mortality.154 Specific prevalence numbers projected for each year from 2015 to 2025 derived from this analysis were provided to the Alzheimer’s Association by a team led by Liesi Hebert, Sc.D., Rush University Institute on Healthy Aging. 68 A8. Number of new cases of Alzheimer’s disease this year (incidence of Alzheimer’s in 2015): The East Boston Established Populations for Epidemiologic Study of the Elderly (EPESE) estimated that there would be 454,000 new cases in 2010 and 491,000 new cases in 2020. See Hebert et al.155 The Alzheimer’s Association calculated that the incidence of new cases in 2015 would be 461,400 by multiplying the 10-year change from 454,000 to 491,000 (37,000) by 0.5 (for the number of years from 2010 to 2015 divided by the number of years from 2010 to 2020), adding that result (18,500) to the Hebert et al. estimate for 2010 (454,000) = 472,500.155 Rounded to the nearest thousand, this is 473,000 new cases of Alzheimer’s disease in 2015. The same technique for linear interpolation from 2000 to 2010 projections was used to calculate the number of new cases in 2015 for ages 65–74, 75–84, and 85 and older. The age group-specific Alzheimer’s disease incident rate is the number of new people with Alzheimer’s per population at risk (the total number of people in the age group in question). These incidence rates are expressed as number of new cases per 1,000 people. Hebert et al. used the 2015 projected population generated from the 2000 U.S. Census to estimate age-specific rates, and these calculations depended on a particular 5-year age structure of the older adult population (e.g., percentage age 65–69, 70–74, etc.). To maintain compatibility with these calculations, we used the total number of people per age group (e.g., 65–74, 75–84, 85+) for 2015 from population projections from the 2000 U.S. Census (see 2000 National Population Projections: Summary Tables located at http://www.census.gov/population/projections/files/natproj/summary/ np-t3-d.pdf). A9. Number of seconds for the development of a new case of Alzheimer’s disease: Although Alzheimer’s does not present suddenly like stroke or heart attack, the rate at which new cases occur can be computed in a similar way. The 67 seconds number is calculated by dividing the number of seconds in a year (31,536,000) by the number of new cases in a year. A8 The number of seconds in a year (31,536,000) divided by 472,500 = 66.7 seconds, rounded to 67 seconds. Using the same method of calculation for 2050, 31,536,000 divided by 959,000 [from Hebert et al.155] = 32.8 seconds, rounded to 33 seconds. A10. Criteria for identifying subjects with Alzheimer’s disease and other dementias in the Framingham Study: Starting in 1975, nearly 2,800 people from the Framingham Study who were age 65 and free of dementia were followed for up to 29 years. Standard diagnostic criteria (DSM-IV criteria) were used to diagnose dementia in the Framingham Study, but, in addition, the subjects had to have at least “moderate” dementia according to the Framingham Study criteria, which is equivalent to a score of 1 or more on the Clinical Dementia Rating (CDR) Scale, and they had to have symptoms for six months or more. Standard diagnostic criteria (the NINCDS–ADRDA criteria from 1984) were used to diagnose Alzheimer’s disease. The examination for dementia and Alzheimer’s disease is described in detail in Seshadri et al.130 The definition of Alzheimer’s disease and other dementias used in the Framingham Study was thus very strict; using a definition that includes milder disease and disease of less than six months’ duration, lifetime risks of Alzheimer’s disease and other dementias would be much higher than those estimated by this study. A11. Projected number of people with Alzheimer’s disease: This comes from the CHAP study.120 Other projections are somewhat lower [see, for example, Brookmeyer et al.427] because they relied on more conservative methods for counting people who currently have Alzheimer’s disease. A8 Nonetheless, these estimates are statistically consistent with each other, and all projections suggest substantial growth in the number of people with Alzheimer’s disease over the coming decades. Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+. A12. Projected number of people age 65 and older with Alzheimer’s disease in 2025: The number 7.1 million is based on a linear extrapolation from the projections of prevalence of Alzheimer’s for the years 2020 (5.8 million) and 2030 (8.4 million) from CHAP.120 A13. Previous high and low projections of Alzheimer’s disease prevalence in 2050: High and low prevalence projections for 2050 from the U.S. Census were not available for the most recent analysis of CHAP data.120 The previous high and low projections indicate that the projected number of Americans with Alzheimer’s in 2050 age 65 and older will range from 11 to 16 million.168 A14. Annual mortality rate due to Alzheimer’s disease by state: Unadjusted death rates are presented rather than age-adjusted death rates in order to provide a clearer depiction of the true burden of mortality for each state. States such as Florida with larger populations of older people will have a larger burden of mortality due to Alzheimer’s. A15. Number of family and other unpaid caregivers of people with Alzheimer’s and other dementias: To calculate this number, the Alzheimer’s Association started with data from the Behavioral Risk Factor Surveillance System (BRFSS). In 2009, the BRFSS survey asked respondents age 18 and over whether they had provided any regular care or assistance during the past month to a family member or friend who had a health problem, long-term illness or disability. To determine the number of family and other unpaid caregivers nationally and by state, we applied the proportion of caregivers nationally and for each state from the 2009 BRFSS (as provided by the Centers for Disease Control and Prevention, Healthy Aging Program, unpublished data) to the number of people age 18 and older nationally and in each state from the U.S. Census Bureau report for July 2014. Available at: www.census. gov/popest/data/datasets.html. Accessed on Jan. 3, 2015. To calculate the proportion of family and other unpaid caregivers who provide care for a person with Alzheimer’s or another dementia, the Alzheimer’s Association used data from the results of a national telephone survey conducted in 2009 for the National Alliance for Caregiving (NAC)/ AARP.428 The NAC/AARP survey asked respondents age 18 and over whether they were providing unpaid care for a relative or friend age 18 or older or had provided such care during the past 12 months. Respondents who answered affirmatively were then asked about the health problems of the person for whom they provided care. In response, 26 percent of caregivers said that: (1) Alzheimer’s or another dementia was the main problem of the person for whom they provided care, or (2) the person had Alzheimer’s or other mental confusion in addition to his or her main problem. The 26 percent figure was applied to the total number of caregivers nationally and in each state, resulting in a total of 15,705,824 Alzheimer’s and dementia caregivers. A16. The 2014 Alzheimer’s Association Women and Alzheimer’s Poll questioned a nationally-representative sample of 3,102 American adults about their attitudes, knowledge and experiences related to Alzheimer’s disease and dementia from January 9, 2014 to January 29, 2014. An additional 512 respondents who provided unpaid help to a relative or friend with Alzheimer’s disease or a related dementia were asked questions about their care provision. Random selections of telephone numbers from landline and cell phone exchanges throughout the United States were conducted. One individual per household was selected from the landline sample, and cell phone respondents were selected if they were 18 years old or older. Interviews were administered in English and Spanish. The poll “oversampled” Hispanics, selected from U.S. Census tracts with higher than an 8 percent concentration of this group. A list sample of Asian Americans was also utilized to oversample this group. A general population weight was used to adjust for number of adults in the household and telephone usage; the second stage of this weight balanced the sample to estimated U.S. population characteristics. A weight for the caregiver sample accounted for the increased likelihood of female and white respondents in the caregiver sample. Sampling weights were also created to account for the use of two supplemental list samples. The resulting interviews comprise a probability-based, nationally representative sample of U.S. adults. A caregiver was defined as an adult over age 18 who, in the past 12 months, provided unpaid care to a relative or friend age 50 or older with Alzheimer’s or another dementia. Questionnaire design and interviewing were conducted by Abt SRBI of New York. A17. Number of hours of unpaid care: To calculate this number, the Alzheimer’s Association used data from a follow-up analysis of results from the 2009 NAC/AARP national telephone survey (data provided under contract by Matthew Greenwald and Associates, Nov. 11, 2009). These data show that caregivers of people with Alzheimer’s and other dementias provided an average of 21.9 hours a week of care, or 1,139 hours per year. The number of family and other unpaid caregivers (15,705,824)A15 was multiplied by the average hours of care per year, which totals 17.886 billion hours of care. A18. Value of unpaid caregiving: To calculate this number, the Alzheimer’s Association used the method of Amo et al.429 This method uses the average of the federal minimum hourly wage ($7.25 in 2014) and the mean hourly wage of home health aides ($17.09 in July 2014).430 The average is $12.17, which was multiplied by the number of hours of unpaid care (17.886 billion) to derive the total value of unpaid care ($217.67 billion). A19. Higher health care costs of Alzheimer’s caregivers: This figure is based on a methodology originally developed by Brent Fulton, Ph.D., for The Shriver Report: A Woman’s Nation Takes on Alzheimer’s. A survey of 17,000 employees of a multinational firm based in the United States estimated that caregivers’ health care costs were 8 percent higher than non-caregivers’.431 To determine the dollar amount represented by that 8 percent figure nationally and in each state, the 8 percent figure and the proportion of caregivers from the 2009 Behavioral Risk Factor Surveillance System A15 were used to weight each state’s caregiver and non-caregiver per capita personal health care spending in 2009,432 inflated to 2014 dollars. The dollar amount difference between the weighted per capita personal health care spending of caregivers and non-caregivers in each state (reflecting the 8 percent higher costs for caregivers) produced the average additional health care costs for caregivers in each state. Nationally, this translated into an average of $639. The amount of the additional cost in each state, which varied by state from a low of $471 in Utah to a high of $974 in the District of Columbia, was multiplied by the total number of unpaid Alzheimer’s and dementia caregivers in that stateA15 to arrive at that state’s total additional health care costs of Alzheimer’s and other dementia caregivers as a result of being a caregiver. The combined total for all states was $9.733 billion. Fulton concluded that this is “likely to be a conservative estimate because caregiving for people with Alzheimer’s is more stressful than caregiving for most people who don’t have the disease.”433 A20. Lewin Model on Alzheimer’s and dementia costs: These numbers come from a model created for the Alzheimer’s Association by The Lewin Group and updated in January 2015. The model estimates total payments for health care, long-term care and hospice for people with Alzheimer’s disease and other dementias based on cost data from the 2008 Medicare Current Beneficiary Survey. A comprehensive report on the model, Changing the Trajectory of Alzheimer’s Disease: How a Treatment by 2025 Saves Lives and Dollars, was published by the Alzheimer’s Association in February 2015. The report and additional information on the model, its long-term projections and its methodology are available at alz.org/trajectory. Appendices 69 A21. All cost estimates were inflated to year 2014 dollars using the Consumer Price Index (CPI): All cost estimates were inflated using the seasonally adjusted average prices for medical care services from all urban consumers. The relevant item within medical care services was used for each cost element. For example, the medical care item within the CPI was used to inflate total health care payments; the hospital services item within the CPI was used to inflate hospital payments; and the nursing home and adult day services item within the CPI was used to inflate nursing home payments. A22. Medicare Current Beneficiary Survey Report: These data come from an analysis of findings from the 2008 Medicare Current Beneficiary Survey (MCBS). The analysis was conducted for the Alzheimer’s Association by Julie Bynum, M.D., M.P.H., Dartmouth Institute for Health Policy and Clinical Care, Center for Health Policy Research.179 The MCBS, a continuous survey of a nationally representative sample of about 16,000 Medicare beneficiaries, is linked to Medicare Part B claims. The survey is supported by the U.S. Centers for Medicare and Medicaid Services (CMS). For community-dwelling survey participants, MCBS interviews are conducted in person three times a year with the Medicare beneficiary or a proxy respondent if the beneficiary is not able to respond. For survey participants who are living in a nursing home or another residential care facility, such as an assisted living residence, retirement home or a long-term care unit in a hospital or mental health facility, MCBS interviews are conducted with a nurse who is familiar with the survey participant and his or her medical record. Data from the MCBS analysis that are included in 2015 Alzheimer’s Disease Facts and Figures pertain only to Medicare beneficiaries age 65 and older. For this MCBS analysis, people with dementia are defined as: those with more severe, and therefore more costly, illness. A second reason is that Hurd et al.’s estimated costs reflect an effort to isolate the incremental costs associated with Alzheimer’s disease and other dementias (those costs attributed only to dementia), while the per-person costs in 2015 Alzheimer’s Disease Facts and Figures incorporate all costs of caring for people with the disease (regardless of whether the expenditure was related to dementia or a coexisting condition). A24. The source for long-term care costs differs from the source used in prior years of this report: Some long-term care cost figures for 2015 are lower than the figures reported in the 2014 Alzheimer’s Disease Facts and Figures. There are several possible explanations for these differences, including differences in the methodologies used, differences in the long-term care organizations included in each survey, or changes in the underlying cost structures. A25. Individuals with Medicare claims for more than one cancer type were excluded from the analysis because the calculation algorithm did not support this situation. A26. Method of calculating the disclosure rate: The number of respondents with a Medicare claim related to a specified medical condition and who responded “Yes” to the question of whether a doctor had that condition divided by the number of respondents with a Medicare claim related to that medical condition. A27. Disclosure rates are based on calculations incorporating data from the 2008, 2009 and 2010 Medicare Current Beneficiary Surveys and Medicare claims data. Calculations and related analyses were performed under contract by Avalere Health, LLC. • Community-dwelling survey participants who answered yes to the MCBS question, “Has a doctor ever told you that you had Alzheimer’s disease or dementia?” Proxy responses to this question were accepted. A28. Ninety-five percent confidence intervals for disclosure rates did not overlap with the 95% confidence intervals for Alzheimer’s disease or other dementias. • Survey participants who were living in a nursing home or other residential care facility and had a diagnosis of Alzheimer’s disease or dementia in their medical record. A29. Comparisons were considered statistically significant if the 95% confidence intervals did not overlap. • Survey participants who had at least one Medicare claim with a diagnostic code for Alzheimer’s disease and other dementias in 2008. The claim could be for any Medicare service, including hospital, skilled nursing facility, outpatient medical care, home health care, hospice or physician, or other health care provider visit. The diagnostic codes used to identify survey participants with Alzheimer’s disease 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 294.11. Costs from the MCBS analysis are based on responses from 2008 and reported in 2014 dollars. A23. Differences in estimated costs reported by Hurd and colleagues: Hurd et al.196 estimated per-person costs using data from participants in ADAMS, a cohort in which all individuals underwent diagnostic assessments for dementia. 2015 Alzheimer’s Disease Facts and Figures estimated per-person costs using data from the Medicare Current Beneficiary Survey (MCBS). 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Our vision is a world without Alzheimer’s disease.® Alzheimer’s Association National Office 225 N. Michigan Ave., Fl. 17 Chicago, IL 60601-7633 Alzheimer’s Association Public Policy Office 1212 New York Ave., N.W., Suite 800 Washington, DC 20005-6105 800.272.3900 alz.org ® ©2015 Alzheimer’s Association. All rights reserved. This is an official publication of the Alzheimer’s Association but may be distributed by unaffiliated organizations and individuals. Such distribution does not constitute an endorsement of these parties or their activities by the Alzheimer’s Association.
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