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 • Number of family caregivers, hours of care provided, Alzheimer’s Disease Facts and Figures economic value of unpaid care nationally and for each state, and the impact of caregiving on caregivers. includes: • Use and costs of health care, long-term care and hospice • Proposed criteria and guidelines for diagnosing care for people with Alzheimer’s disease and other Alzheimer’s disease from the National Institute on Aging dementias. and the Alzheimer’s Association. • Challenges surrounding the disclosure of an Alzheimer’s • Overall number of Americans with Alzheimer’s disease disease diagnosis to individuals with the disease. nationally and for each state. The Appendices detail sources and methods used to • Proportion of women and men with Alzheimer’s and derive data in this report. other dementias. This report frequently cites statistics that apply to all • Estimates of lifetime risk for developing Alzheimer’s individuals with dementia. When possible, specific disease. information about individuals with Alzheimer’s disease is • Number of deaths due to Alzheimer’s disease nationally provided; in other cases, the reference may be a more and for each state, and death rates by age. 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 16 Estimates of the Number of People with Alzheimer’s Disease by State 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 22 Growth of the Oldest-Old Population 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 Duration of Illness from Diagnosis to Death 28 Burden of Alzheimer’s Disease 28 2 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 65 The Process of Disclosure 66 Conclusion 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 When an individual has these or other symptoms of dementia, a physician must conduct tests to identify Physicians often refer to the Diagnostic and Statistical the cause. Different causes of dementia are associated Manual of Mental Disorders (DSM) to guide them in with distinct symptom patterns and brain abnormalities, determining if an individual has dementia and, if so, the as described in Table 1 (see pages 6-7). Increasing condition causing dementia. The latest edition of the evidence from long-term observational and autopsy manual, DSM-5, classifies dementia as a neurocognitive studies indicates that many people with dementia, disorder.3 Dementia may be either a major or a mild especially those in the older age groups, have brain neurocognitive disorder. To meet DSM-5 criteria for a abnormalities associated with more than one cause of major neurocognitive disorder, an individual must have dementia.4-8 This is called mixed dementia. evidence of significant cognitive decline, and the decline must interfere with independence in everyday In some cases, individuals do not have dementia, activities (for example, assistance may be needed with but instead have a condition whose symptoms mimic complex activities such as paying bills or managing those of dementia. Common causes of dementia-like medications). To meet DSM-5 criteria for a mild symptoms are depression, delirium, side effects neurocognitive disorder, an individual must have from medications, thyroid problems, certain vitamin evidence of modest cognitive decline, but the decline deficiencies and excessive use of alcohol. Unlike does not interfere with everyday activities (individuals dementia, these conditions often may be reversed with can still perform complex activities such as paying bills treatment. One meta-analysis, a method of analysis in or managing medications, but the activities require which results of multiple studies are examined, greater mental effort). 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 Most common cause of dementia; accounts for an estimated 60 percent to 80 percent of cases. About half of disease 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 Previously known as multi-infarct or post-stroke dementia, vascular dementia is less common as a sole cause dementia 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 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 Lewy bodies parkinsonian movement features. These features, as well as early visuospatial impairment, may occur in the (DLB) 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 Characteristics Frontotemporal Includes dementias such as behavioral-variant FTLD, primary progressive aphasia, Pick’s disease, corticobasal lobar degenera- degeneration and progressive supranuclear palsy. tion (FTLD) 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 Problems with movement (slowness, rigidity, tremor and changes in gait) are common symptoms of PD. disease (PD) In PD, alpha-synuclein aggregates appear in an area deep in the brain called the substantia nigra. The dementia 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). Creutzfeldt- This very rare and rapidly fatal disorder impairs memory and coordination and causes behavior changes. Jakob disease 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 Symptoms include difficulty walking, memory loss and inability to control urination. pressure Accounts for less than 5 percent of dementia cases.11 hydrocephalus 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 steps. Alzheimer’s disease was first identified more than • Decreased or poor judgment. 100 years ago, but 70 years passed before it was • Withdrawal from work or social activities. recognized as the most common cause of dementia • Changes in mood and personality, including apathy and a “major killer.”12 Although research has revealed a and depression. great deal about Alzheimer’s, much is yet to be 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. 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 Changes in the Brain That Are Associated with Alzheimer’s Disease refers to the disease as defined by the earlier criteria.17 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. The accumulation of the protein beta-amyloid (called • Challenges in planning or solving problems. beta-amyloid plaques) outside neurons and the • Difficulty completing familiar tasks at home, at accumulation of an abnormal form of the protein tau work or at leisure. (called tau tangles) inside neurons are two of several • Confusion with time or place. brain changes believed to contribute to the • Trouble understanding visual images and spatial development of Alzheimer’s. In Alzheimer’s disease, relationships. information transfer at synapses begins to fail, the • New problems with words in speaking or writing. number of synapses declines, and neurons eventually 8 Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.