2013Alzheimer’sdiseasefacts andfiguresIncludes a Special Report onlong-distance caregivers 1 in 3 seniors dies with Alzheimer’sor another dementia.Out-of-pocket expenses for long-distancecaregivers are nearly twice as much aslocal caregivers.Alzheimer’s disease is the sixth-leadingcause of death.In 2012, 15.4 million caregivers providedan estimated 17.5 billion hours of unpaid care,valued at more than $216 billion.
Alzheimer’s Association, 2013 Alzheimer’s Disease Facts and Figures, Alzheimer’s & Dementia, Volume 9, Issue 2.2013 Alzheimer’s Disease Facts and Figuresis a statistical resource for U.S. data relatedto Alzheimer’s disease, the most commontype of dementia, as well as otherdementias. Background and context forinterpretation of the data are contained inthe Overview. This information includesdefinitions of the various types of dementiaand a summary of current knowledge aboutAlzheimer’s disease. Additional sectionsaddress prevalence, mortality, caregivingand use and costs of care and services. TheSpecial Report focuses on long-distancecaregivers of people with Alzheimer’sdisease and other dementias.about this report
1 2013 Alzheimer’s Disease Facts and FiguresSpecific information in this year’sAlzheimer’s Disease Facts and Figuresincludes:• Proposed new criteria and guidelines for diagnosingAlzheimer’s disease from the National Institute onAging and the Alzheimer’s Association.• Overall number of Americans with Alzheimer’sdisease nationally and for each state.• Proportion of women and men with Alzheimer’s andother dementias.• Estimates of lifetime risk for developing Alzheimer’sdisease.• Number of family caregivers, hours of care provided,economic value of unpaid care nationally and for eachstate, and the impact of caregiving on caregivers.• Number of deaths due to Alzheimer’s diseasenationally and for each state, and death rates by age.• Use and costs of health care, long-term care andhospice care for people with Alzheimer’s disease andother dementias.• Number of long-distance caregivers and the specialchallenges they face.The Appendices detail sources and methods usedto derive data in this report.This document frequently cites statistics that applyto individuals with all types of dementia. Whenpossible, specific information about Alzheimer’sdisease is provided; in other cases, the referencemay be a more general one of “Alzheimer’s diseaseand other dementias.”The conclusions in this report reflect currentlyavailable data on Alzheimer’s disease. They are theinterpretations of the Alzheimer’s Association.
2 Contents 2013 Alzheimer’s Disease Facts and FiguresOverview of Alzheimer’s DiseaseDementia: Definition and Specific Types 5Alzheimer’s Disease 5 Symptoms of Alzheimer’s Disease 5 Diagnosis of Alzheimer’s Disease 6 A Modern Diagnosis of Alzheimer’s Disease: Proposed New Criteria and Guidelines 8 Changes in the Brain That Are Associated with Alzheimer’s Disease 10 Genetic Mutations That Cause Alzheimer’s Disease 10 Risk Factors for Alzheimer’s Disease 11 Treatment of Alzheimer’s Disease 13PrevalencePrevalence of Alzheimer’s Disease and Other Dementias 15Incidence and Lifetime Risk of Alzheimer’s Disease 17Estimates of the Number of People with Alzheimer’s Disease, by State 18Looking to the Future 19MortalityDeaths from Alzheimer’s Disease 24Public Health Impact of Deaths from Alzheimer’s Disease 25State-by-State Deaths from Alzheimer’s Disease 27Death Rates by Age 27Duration of Illness from Diagnosis to Death 27contents
3 2013 Alzheimer’s Disease Facts and Figures ContentsCaregivingUnpaid Caregivers 29 Who Are the Caregivers? 29 Ethnic and Racial Diversity in Caregiving 29 Caregiving Tasks 30 Duration of Caregiving 31 Hours of Unpaid Care and Economic Value of Caregiving 32 Impact of Alzheimer’s Disease Caregiving 32 Interventions That May Improve Caregiver Outcomes 37Paid Caregivers 39Use and Costs of Health Care, Long-Term Care and Hospice Total Payments for Health Care, Long-Term Care and Hospice 41Use and Costs of Health Care Services 42Use and Costs of Long-Term Care Services 46Out-of-Pocket Costs for Health Care and Long-Term Care Services 51Use and Costs of Hospice Care 51Projections for the Future 51Special Report: Long-Distance CaregiversDefinition and Prevalence 53Factors Influencing Geographic Separation 54Roles54Unique Challenges 55Interventions56Trends57Conclusions 57AppendicesEnd Notes 58References61
overview ofAlzheimer’sdiseasealzheimer’s disease is themost common type of dementia.NO.
5Dementia: Definition and Specific TypesPhysicians often define dementia based on the criteriagiven in the Diagnostic and Statistical Manual of MentalDisorders, Fourth Edition (DSM-IV).(1)To meet DSM-IVcriteria for dementia, the following are required:• Symptoms must include decline in memory and in at least one of the following cognitive abilities: 1) Ability to speak coherently or understand spoken or written language. 2) Ability to recognize or identify objects, assuming intact sensory function. 3) Ability to perform motor activities, assuming intact motor abilities and sensory function and comprehension of the required task. 4) Ability to think abstractly, make sound judgments and plan and carry out complex tasks.• The decline in cognitive abilities must be severe enough to interfere with daily life.In May 2013, the American Psychiatric Association isexpected to release DSM-5. This new version of DSMis expected to incorporate dementia into the diagnosticcategory of major neurocognitive disorder.To establish a diagnosis of dementia using DSM-IV, aphysician must determine the cause of the individual’ssymptoms. Some conditions have symptoms that mimicdementia but that, unlike dementia, may be reversedwith treatment. An analysis of 39 articles describing5,620 people with dementia-like symptoms reported that9 percent had potentially reversible dementia.(2)Commoncauses of potentially reversible dementia are depression,delirium, side effects from medications, thyroidproblems, certain vitamin deficiencies and excessive useof alcohol. In contrast, Alzheimer’s disease and otherdementias are caused by damage to neurons that cannotbe reversed with current treatments.When an individual has dementia, a physician mustconduct tests (see Diagnosis of Alzheimer’s Disease,page 6) to identify the form of dementia that is causingsymptoms. Different types of dementia are associatedwith distinct symptom patterns and brain abnormalities,as described in Table 1. However, increasing evidencefrom long-term observational and autopsy studiesindicates that many people with dementia have brainabnormalities associated with more than one type ofdementia.(3-7)This is called mixed dementia and is mostoften found in individuals of advanced age. 2013 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s DiseaseAlzheimer’s DiseaseAlzheimer’s disease was first identified more than100 years ago, but research into its symptoms, causes,risk factors and treatment has gained momentum only inthe last 30 years. Although research has revealed a greatdeal about Alzheimer’s, the precise changes in the brainthat trigger the development of Alzheimer’s, and theorder in which they occur, largely remain unknown. Theonly exceptions are certain rare, inherited forms of thedisease caused by known genetic mutations.Symptoms of Alzheimer’s DiseaseAlzheimer’s disease affects people in different ways. Themost common symptom pattern begins with a graduallyworsening ability to remember new information. Thisoccurs because the first neurons to die and malfunctionare usually neurons in brain regions involved in formingnew memories. As neurons in other parts of the brainmalfunction and die, individuals experience otherdifficulties. The following are common symptoms ofAlzheimer’s:• Memory loss that disrupts daily life.• Challenges in planning or solving problems.Alzheimer’s disease is the most common type of dementia.“Dementia” isan umbrella term describing a variety of diseases and conditions that developwhen nerve cells in the brain (called neurons) die or no longer function normally.The death or malfunction of neurons causes changes in one’s memory,behavior and ability to think clearly. In Alzheimer’s disease, these brain changeseventually impair an individual’s ability to carry out such basic bodily functionsas walking and swallowing. Alzheimer’s disease is ultimately fatal.
6 Overview of Alzheimer’s Disease 2013 Alzheimer’s Disease Facts and Figures• 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.• Misplacing things and losing the ability to retrace steps.• Decreased or poor judgment.• Withdrawal from work or social activities.• Changes in mood and personality.For more information about the warning signs ofAlzheimer’s, visit www.alz.org/10signs.Individuals progress from mild Alzheimer’s disease tomoderate and severe disease at different rates. As thedisease progresses, the individual’s cognitive andfunctional abilities decline. In advanced Alzheimer’s,people need help with basic activities of daily living(ADLs), such as bathing, dressing, eating and using thebathroom. Those in the final stages of the disease losetheir ability to communicate, fail to recognize loved onesand become bed-bound and reliant on around-the-clockcare. When an individual has difficulty moving becauseof Alzheimer’s disease, they are more vulnerable toinfections, including pneumonia (infection of the lungs).Alzheimer’s-related pneumonia is often a contributingfactor to the death of people with Alzheimer’s disease.Diagnosis of Alzheimer’s DiseaseA diagnosis of Alzheimer’s disease is most commonlymade by an individual’s primary care physician. Thephysician obtains a medical and family history, includingpsychiatric history and history of cognitive and behavioralchanges. The physician also asks a family member orother person close to the individual to provide input. Inaddition, the physician conducts cognitive tests andphysical and neurologic examinations and may requestthat the individual undergo magnetic resonance imaging(MRI) scans. MRI scans can help identify brain changes,such as the presence of a tumor or evidence of a stroke,that could explain the individual’s symptoms.Alzheimer’sdiseaseVasculardementiaMost common type of dementia; accounts for an estimated 60 to 80 percent of cases.Difficulty remembering names and recent events is often an early clinical symptom; apathy and depressionare also often early symptoms. Later symptoms include impaired judgment, disorientation, confusion, behaviorchanges and difficulty speaking, swallowing and walking.New criteria and guidelines for diagnosing Alzheimer’s were proposed in 2011. They recommend that Alzheimer’sdisease be considered a disease that begins well before the development of symptoms (pages 8–9).Hallmark brain abnormalities are deposits of the protein fragment beta-amyloid (plaques) and twisted strands ofthe protein tau (tangles) as well as evidence of nerve cell damage and death in the brain.Previously known as multi-infarct or post-stroke dementia, vascular dementia is less common as a sole causeof dementia than is Alzheimer’s disease.Impaired judgment or ability to make plans is more likely to be the initial symptom, as opposed to the memoryloss often associated with the initial symptoms of Alzheimer’s.Vascular dementia occurs because of brain injuries such as microscopic bleeding and blood vessel blockage.The location of the brain injury determines how the individual’s thinking and physical functioning are affected. In the past, evidence of vascular dementia was used to exclude a diagnosis of Alzheimer’s disease (and viceversa). That practice is no longer considered consistent with pathologic evidence, which shows that the brainchanges of both types of dementia can be present simultaneously. When any two or more types of dementiaare present at the same time, the individual is considered to have “mixed dementia.”Type of Dementia Characteristicstable 1 Common Types of Dementia and Their Typical Characteristics
7 2013 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s DiseasePeople with DLB have some of the symptoms common in Alzheimer’s, but are more likely than people withAlzheimer’s to have initial or early symptoms such as sleep disturbances, well-formed visual hallucinations,and muscle rigidity or other parkinsonian movement features.Lewy bodies are abnormal aggregations (or clumps) of the protein alpha-synuclein. When they develop ina part of the brain called the cortex, dementia can result. Alpha-synuclein also aggregates in the brains ofpeople with Parkinson’s disease, but the aggregates may appear in a pattern that is different from DLB.The brain changes of DLB alone can cause dementia, or they can be present at the same time as the brainchanges of Alzheimer’s disease and/or vascular dementia, with each entity contributing to the developmentof dementia. When this happens, the individual is said to have “mixed dementia.”Includes dementias such as behavioral variant FTLD, primary progressive aphasia, Pick’s disease andprogressive supranuclear palsy.Typical symptoms include changes in personality and behavior and difficulty with language.Nerve cells in the front and side regions of the brain are especially affected. No distinguishing microscopicabnormality is linked to all cases.The brain changes of behavioral variant FTLD may be present at the same time as the brain changes ofAlzheimer’s, but people with behavioral variant FTLD generally develop symptoms at a younger age(at about age 60) and survive for fewer years than those with Alzheimer’s.Characterized by the hallmark abnormalities of Alzheimer’s and another type of dementia — most commonly,vascular dementia, but also other types, such as DLB.Recent studies suggest that mixed dementia is more common than previously thought.As Parkinson’s disease progresses, it often results in a severe dementia similar to DLB or Alzheimer’s.Problems with movement are a common symptom early in the disease.Alpha-synuclein aggregates are likely to begin in an area deep in the brain called the substantia nigra. Theaggregates are thought to cause degeneration of the nerve cells that produce dopamine.The incidence of Parkinson’s disease is about one-tenth that of Alzheimer’s disease.Rapidly fatal disorder that impairs memory and coordination and causes behavior changes.Results from an infectious misfolded protein (prion) that causes other proteins throughout the brain tomisfold and thus malfunction.Variant Creutzfeldt-Jakob disease is believed to be caused by consumption of products from cattle affectedby mad cow disease.Symptoms include difficulty walking, memory loss and inability to control urination.Caused by the buildup of fluid in the brain.Can sometimes be corrected with surgical installation of a shunt in the brain to drain excess fluid.Dementia withLewy bodies(DLB)Frontotemporallobardegeneration(FTLD)MixeddementiaParkinson’sdiseaseCreutzfeldt-JakobdiseaseNormalpressurehydrocephalusType of Dementia Characteristicstable 1 (cont.) Common Types of Dementia and Their Typical Characteristics
8These criteria and guidelines updateddiagnostic criteria and guidelinespublished in 1984 by the Alzheimer’sAssociation and the National Instituteof Neurological Disorders and Stroke.In 2012, the NIA and the Alzheimer’sAssociation also proposed newguidelines to help pathologistsdescribe and categorize the brainchanges associated with Alzheimer’sdisease and other dementias.(12)It is important to note that these areproposed criteria and guidelines. Moreresearch is needed, especially researchabout biomarkers, before the criteriaand guidelines can be used in clinicalsettings, such as in a doctor’s office.Differences Between theOriginal and New CriteriaThe 1984 diagnostic criteria andguidelines were based chiefly on adoctor’s clinical judgment about thecause of an individual’s symptoms,taking into account reports from theindividual, family members and friends;results of cognitive tests; and generalneurological assessment. The newcriteria and guidelines incorporate twonotable changes:(1) They identify three stages ofAlzheimer’s disease, with the firstoccurring before symptoms such asmemory loss develop. In contrast, forAlzheimer’s disease to be diagnosedusing the 1984 criteria, memory lossand a decline in thinking abilities severeenough to affect daily life must havealready occurred.(2) They incorporate biomarker tests.A biomarker is a biological factor thatcan be measured to indicate thepresence or absence of disease, or therisk of developing a disease. Forexample, blood glucose level is abiomarker of diabetes, and cholesterollevel is a biomarker of heart diseaserisk. Levels of certain proteins in fluid(for example, levels of beta-amyloidand tau in the cerebrospinal fluid andblood) are among several factors beingstudied as possible biomarkers forAlzheimer’s.The Three Stages of Alzheimer’sDisease Proposed by the NewCriteria and GuidelinesThe three stages of Alzheimer’sdisease proposed by the new criteriaand guidelines are preclinicalAlzheimer’s disease, mild cognitiveimpairment (MCI) due to Alzheimer’sdisease, and dementia due toAlzheimer’s disease. These stages aredifferent from the stages now used todescribe Alzheimer’s. The 2011 criteriapropose that Alzheimer’s diseasebegins before the development ofsymptoms, and that new technologieshave the potential to identify brainchanges that precede the developmentof symptoms. Using the new criteria,an individual with these early brainchanges would be said to havepreclinical Alzheimer’s disease or MCIdue to Alzheimer’s, and those withsymptoms would be said to havedementia due to Alzheimer’s disease.Dementia due to Alzheimer’s wouldencompass all stages of Alzheimer’sdisease commonly described today,from mild to moderate to severe.Preclinical Alzheimer’s disease —In this stage, individuals havemeasurable changes in the brain,cerebrospinal fluid and/or blood(biomarkers) that indicate the earliestsigns of disease, but they have not yetdeveloped symptoms such as memoryloss. This preclinical or presymptomaticstage reflects current thinking thatAlzheimer’s-related brain changes maybegin 20 years or more beforesymptoms occur. Although the newcriteria and guidelines identifya modern Diagnosis of Alzheimer’s Disease:Proposed New Criteria and GuidelinesIn 2011, the National Institute on Aging (NIA)and the Alzheimer’s Association proposednew criteria and guidelines for diagnosingAlzheimer’s disease.(8-11) Overview of Alzheimer’s Disease 2013 Alzheimer’s Disease Facts and Figures
9preclinical disease as a stage ofAlzheimer’s, they do not establishdiagnostic criteria that doctors can usenow. Rather, they state that additionalresearch on biomarker tests is neededbefore this stage of Alzheimer’s can bediagnosed.MCI due to Alzheimer’s disease —Individuals with MCI have mild butmeasurable changes in thinkingabilities that are noticeable to theperson affected and to family membersand friends, but that do not affect theindividual’s ability to carry out everydayactivities. Studies indicate that as manyas 10 to 20 percent of people age 65or older have MCI.(13-15)As many as15 percent of people whose MCIsymptoms cause them enoughconcern to contact their doctor’s officefor an exam go on to develop dementiaeach year. Nearly half of all people whohave visited a doctor about MCIsymptoms will develop dementia inthree or four years.(16)When MCI is identified throughcommunity sampling, in whichindividuals in a community who meetcertain criteria are assessed regardlessof whether they have memory orcognitive complaints, the estimatedrate of progression to Alzheimer’s isslightly lower — up to 10 percent peryear.(17)Further cognitive decline ismore likely among individuals whoseMCI involves memory problems thanamong those whose MCI does notinvolve memory problems. Over oneyear, most individuals with MCI whoare identified through communitysampling remain cognitively stable.Some, primarily those without memoryproblems, experience an improvementin cognition or revert to normalcognitive status.(18)It is unclear whysome people with MCI developdementia and others do not. When anindividual with MCI goes on to developdementia, many scientists believe theMCI is actually an early stage of theparticular form of dementia, rather thana separate condition.Once accurate biomarker tests forAlzheimer’s have been identified, thenew criteria and guidelines recommendbiomarker testing for people with MCIto learn whether they have brainchanges that put them at high risk ofdeveloping Alzheimer’s disease andother dementias. If it can be shownthat changes in the brain, cerebrospinalfluid and/or blood are caused byphysiologic processes associated withAlzheimer’s, the new criteria andguidelines recommend a diagnosis ofMCI due to Alzheimer’s disease.Dementia due to Alzheimer’sdisease — This stage is characterizedby memory, thinking and behavioralsymptoms that impair a person’s abilityto function in daily life and that arecaused by Alzheimer’s disease-relatedbrain changes.Biomarker TestsThe new criteria and guidelinesidentify two biomarker categories:(1) biomarkers showing the level ofbeta-amyloid accumulation in the brainand (2) biomarkers showing thatneurons in the brain are injured oractually degenerating.Many researchers believe that futuretreatments to slow or stop theprogression of Alzheimer’s disease andpreserve brain function (called“disease-modifying” treatments) willbe most effective when administeredduring the preclinical and MCI stagesof the disease. Biomarker tests will beessential to identify which individualsare in these early stages and shouldreceive disease-modifying treatment.They also will be critical for monitoringthe effects of treatment. At this time,however, more research is needed tovalidate the accuracy of biomarkers andbetter understand which biomarkertest or combination of tests is mosteffective in diagnosing Alzheimer’sdisease. The most effective test orcombination of tests may differdepending on the stage of the diseaseand the type of dementia.(19) 2013 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s Disease
10Changes in the Brain That Are Associatedwith Alzheimer’s DiseaseMany experts believe that Alzheimer’s, like othercommon chronic diseases, develops as a result ofmultiple factors rather than a single cause. InAlzheimer’s, these multiple factors are a variety ofbrain changes that may begin 20 or more years beforesymptoms appear. Increasingly, the time between theinitial brain changes of Alzheimer’s and the symptomsof advanced Alzheimer’s is considered by scientists torepresent the “continuum” of Alzheimer’s. At the startof the continuum, the individual is able to functionnormally despite these brain changes. Further alongthe continuum, the brain can no longer compensate forthe neuronal damage that has occurred, and theindividual shows subtle decline in cognitive function.In some cases, physicians identify this point in thecontinuum as MCI. Toward the end of the continuum,the damage to and death of neurons is so significantthat the individual shows obvious cognitive decline,including symptoms such as memory loss or confusionas to time or place. At this point, physicians followingthe 1984 criteria and guidelines for Alzheimer’s woulddiagnose the individual as having Alzheimer’s disease.The 2011 criteria and guidelines propose that the entirecontinuum, not just the symptomatic points on thecontinuum, represents Alzheimer’s. Researcherscontinue to explore why some individuals who havebrain changes associated with the earlier points of thecontinuum do not go on to develop the overtsymptoms of the later points of the continuum.These and other questions reflect the complexity ofthe brain. A healthy adult brain has 100 billion neurons,each with long, branching extensions. Theseextensions enable individual neurons to formspecialized connections with other neurons. At suchconnections, called synapses, information flows in tinychemical pulses released by one neuron and detectedby the receiving neuron. The brain contains about 100trillion synapses. They allow signals to travel rapidlythrough the brain’s circuits, creating the cellular basisof memories, thoughts, sensations, emotions, Overview of Alzheimer’s Disease 2013 Alzheimer’s Disease Facts and Figuresmovements and skills. Alzheimer’s disease interfereswith the proper functioning of neurons and synapses.Among the brain changes believed to contribute to thedevelopment of Alzheimer’s are the accumulation ofthe protein beta-amyloid outside neurons in the brain(called beta-amyloid plaques) and the accumulation ofan abnormal form of the protein tau inside neurons(called tau tangles). In Alzheimer’s disease, informationtransfer at synapses begins to fail, the number ofsynapses declines, and neurons eventually die. Theaccumulation of beta-amyloid is believed to interferewith the neuron-to-neuron communication at synapsesand to contribute to cell death. Tau tangles block thetransport of nutrients and other essential molecules inthe neuron and are also believed to contribute to celldeath. The brains of people with advanced Alzheimer’sshow dramatic shrinkage from cell loss andwidespread debris from dead and dying neurons.Genetic Mutations That CauseAlzheimer’s DiseaseThe only known cause of Alzheimer’s is geneticmutation — an abnormal change in the sequence ofchemical pairs inside genes. A small percentage ofAlzheimer’s disease cases, probably fewer than1 percent, are caused by three known geneticmutations. These mutations involve the gene for theamyloid precursor protein and the genes for thepresenilin 1 and presenilin 2 proteins. Inheriting any ofthese genetic mutations guarantees that an individualwill develop Alzheimer’s disease. In such individuals,disease symptoms tend to develop before age 65,sometimes as early as age 30. People with thesegenetic mutations are said to have “dominantlyinherited” Alzheimer’s.The development and progression of Alzheimer’s inthese individuals is of great interest to researchers, asthe changes occurring in their brains also occur inindividuals with the more common late-onsetAlzheimer’s disease (in which symptoms develop atage 65 or older). Future treatments that are effective inpeople with dominantly inherited Alzheimer’s may
2013 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s Disease 11provide clues to effective treatments for people withlate-onset disease.The Dominantly Inherited Alzheimer Network (DIAN) isa worldwide network of research centers investigatingdisease progression in people with a gene fordominantly inherited Alzheimer’s who have not yetdeveloped symptoms. DIAN researchers have found apattern of brain changes in these individuals. Thepattern begins with decreased levels of beta-amyloid inthe cerebrospinal fluid (CSF, the fluid surrounding thebrain and spinal cord). This is followed by increasedlevels of the protein tau in CSF and increased levels ofbeta-amyloid in the brain. As the disease progresses,the brain’s ability to use glucose, its main fuel source,decreases. This decreased glucose metabolism isfollowed by impairment of a type of memory calledepisodic memory, and then a worsening of cognitiveskills that is called global cognitive impairment.(20)Whether this pattern of changes will also hold true forindividuals at high risk for late-onset Alzheimer’sdisease or younger-onset Alzheimer’s (in whichsymptoms develop before age 65) that is notdominantly inherited requires further study.Risk Factors for Alzheimer’s DiseaseMany factors contribute to one’s likelihood ofdeveloping Alzheimer’s. The greatest risk factor forAlzheimer’s disease is advancing age, but Alzheimer’sis not a typical part of aging. Most people withAlzheimer’s disease are diagnosed at age 65 or older.However, people younger than 65 can also develop thedisease, although this is much more rare. Advancingage is not the only risk factor for Alzheimer’s disease.The following sections describe other risk factors.Family HistoryIndividuals who have a parent, brother or sister withAlzheimer’s are more likely to develop the diseasethan those who do not have a first-degree relative withAlzheimer’s.(21-23)Those who have more than onefirst-degree relative with Alzheimer’s are at even higherrisk of developing the disease.(24)When diseases run infamilies, heredity (genetics), shared environmentaland lifestyle factors, or both, may play a role. Theincreased risk associated with having a family historyof Alzheimer’s is not entirely explained by whetherthe individual has inherited the apolipoproteinE-e4 risk gene.Apolipoprotein E-e4 (APOE-e4) GeneThe APOE gene provides the blueprint for a proteinthat carries cholesterol in the bloodstream. Everyoneinherits one form of the APOE gene — ε2, ε3 or ε4— from each parent. The ε3 form is the mostcommon,(25)with about 60 percent of the U.S.population inheriting ε3 from both parents.(26)The ε2and ε4 forms are much less common. An estimated20 to 30 percent of individuals in the United Stateshave one or two copies of the ε4 form(25-26);approximately 2 percent of the U.S. population has twocopies of ε4.(26)The remaining 10 to 20 percent haveone or two copies of ε2.Having the ε3 form is believed to neither increase nordecrease one’s risk of Alzheimer’s, while having theε2 form may decrease one’s risk. The ε4 form,however, increases the risk of developing Alzheimer’sdisease and of developing it at a younger age. Thosewho inherit two ε4 genes have an even higher risk.Researchers estimate that between 40 and 65 percentof people diagnosed with Alzheimer’s have one ortwo copies of the APOE-ε4 gene.(25, 27-28)Inheriting the APOE-ε4 gene does not guarantee thatan individual will develop Alzheimer’s. This is alsotrue for several genes that appear to increase risk ofAlzheimer’s, but have a limited overall effect in thepopulation because they are rare or only slightlyincrease risk. Many factors other than genetics arebelieved to contribute to the development ofAlzheimer’s disease.Mild Cognitive Impairment (MCI)MCI is a condition in which an individual has mild butmeasurable changes in thinking abilities that arenoticeable to the person affected and to familymembers and friends, but that do not affect theindividual’s ability to carry out everyday activities.
12People with MCI, especially MCI involving memoryproblems, are more likely to develop Alzheimer’s andother dementias than people without MCI. However,MCI does not always lead to dementia. For someindividuals, MCI reverts to normal cognition on its ownor remains stable. In other cases, such as when amedication causes cognitive impairment, MCI ismistakenly diagnosed. Therefore, it’s important thatpeople experiencing cognitive impairment seek help assoon as possible for diagnosis and possible treatment.The 2011 proposed criteria and guidelines for diagnosisof Alzheimer’s disease(8-11)suggest that in some casesMCI is actually an early stage of Alzheimer’s or anotherdementia. (For more information on MCI, seeA Modern Diagnosis of Alzheimer’s Disease: ProposedNew Criteria and Guidelines, pages 8-9.)Cardiovascular Disease Risk FactorsGrowing evidence suggests that the health of the brainis closely linked to the overall health of the heart andblood vessels. The brain is nourished by one of thebody’s richest networks of blood vessels. A healthyheart helps ensure that enough blood is pumpedthrough these blood vessels to the brain, and healthyblood vessels help ensure that the brain is suppliedwith the oxygen- and nutrient-rich blood it needs tofunction normally.Many factors that increase the risk of cardiovasculardisease are also associated with a higher risk ofdeveloping Alzheimer’s and other dementias. Thesefactors include smoking,(29-31)obesity (especially inmidlife),(32-37)diabetes,(31, 38-41)high cholesterol inmidlife(34, 42)and hypertension in midlife.(34, 37, 43-45)A pattern that has emerged from these findings, takentogether, is that dementia risk may increase with thepresence of the “metabolic syndrome,” a collection ofconditions occurring together — specifically, three ormore of the following: hypertension, high bloodglucose, central obesity (obesity in which excessweight is predominantly carried at the waist) andabnormal blood cholesterol levels.(40) Overview of Alzheimer’s Disease 2013 Alzheimer’s Disease Facts and FiguresConversely, factors that protect the heart may protect thebrain and reduce the risk of developing Alzheimer’s andother dementias. Physical activity(40, 46-48)appears to beone of these factors. In addition, emerging evidencesuggests that consuming a diet that benefits the heart,such as one that is low in saturated fats and rich invegetables and vegetable-based oils, may be associatedwith reduced Alzheimer’s and dementia risk.(40)Unlike genetic risk factors, many of these cardiovasculardisease risk factors are modifiable — that is, they can bechanged to decrease the likelihood of developingcardiovascular disease and, possibly, the cognitive declineassociated with Alzheimer’s and other forms of dementia.EducationPeople with fewer years of education are at higher risk forAlzheimer’s and other dementias than those with moreyears of formal education.(49-53)Some researchers believethat having more years of education builds a “cognitivereserve” that enables individuals to better compensate forchanges in the brain that could result in symptoms ofAlzheimer’s or another dementia.(52, 54-56)According to thecognitive reserve hypothesis, having more years ofeducation increases the connections between neurons inthe brain and enables the brain to compensate for theearly brain changes of Alzheimer’s by using alternateroutes of neuron-to-neuron communication to complete acognitive task. However, some scientists believe that theincreased risk of dementia among those with lowereducational attainment may be explained by other factorscommon to people in lower socioeconomic groups, suchas increased risk for disease in general and less access tomedical care.(57)Social and Cognitive EngagementAdditional studies suggest that other modifiable factors,such as remaining mentally(58-60)and socially active, maysupport brain health and possibly reduce the risk ofAlzheimer’s and other dementias.(61-68)Remaining sociallyand cognitively active may help build cognitive reserve(see Education, above), but the exact mechanism by whichthis may occur is unknown. Compared with cardiovasculardisease risk factors, there are fewer studies of the
association between social and cognitive engagement andthe likelihood of developing Alzheimer’s disease and otherdementias. More research is needed to better understandhow social and cognitive engagement may affectbiological processes to reduce risk.Traumatic Brain Injury (TBI)Moderate and severe TBI increase the risk of developingAlzheimer’s disease and other dementias.(69)TBI is thedisruption of normal brain function caused by a blow or joltto the head or penetration of the skull by a foreign object.Not all blows or jolts to the head disrupt brain function.Moderate TBI is defined as a head injury resulting in lossof consciousness or post-traumatic amnesia that lastsmore than 30 minutes. If loss of consciousness orpost-traumatic amnesia lasts more than 24 hours, theinjury is considered severe. Half of all moderate or severeTBIs are caused by motor vehicle accidents.(70)ModerateTBI is associated with twice the risk of developingAlzheimer’s and other dementias compared with no headinjuries, and severe TBI is associated with 4.5 times therisk.(71)These increased risks have not been studied forindividuals experiencing occasional mild head injury or anynumber of common minor mishaps such as bumpingone’s head against a shelf or an open cabinet door.Groups that experience repeated head injuries, suchas boxers, football players(72)and combat veterans, areat higher risk of dementia, cognitive impairment andneurodegenerative disease than individuals whoexperience no head injury.(73-78)Emerging evidencesuggests that even repeated mild TBI might promoteneurodegenerative disease.(79)Some of theseneurodegenerative diseases, such as chronic traumaticencephalopathy, can only be distinguished fromAlzheimer’s upon autopsy.Treatment of Alzheimer’s DiseasePharmacologic TreatmentPharmacologic treatments are treatments in whichmedication is administered to stop an illness or treat itssymptoms. None of the treatments available today forAlzheimer’s disease slows or stops the death and 2013 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s Disease 13malfunction of neurons in the brain that causeAlzheimer’s symptoms and make the disease fatal.However, dozens of drugs and therapies aimed atslowing or stopping brain cell death and malfunction arebeing studied worldwide. Five drugs have beenapproved by the U.S. Food and Drug Administration thattemporarily improve symptoms of Alzheimer’s diseaseby increasing the amount of chemicals calledneurotransmitters in the brain. The effectiveness ofthese drugs varies across the population.Despite the lack of disease-modifying therapies, studieshave consistently shown that active medicalmanagement of Alzheimer’s and other dementias canimprove quality of life through all stages of the diseasefor individuals with dementia and their caregivers.(79-81)Active management includes (1) appropriate use ofavailable treatment options; (2) effective managementof coexisting conditions; (3) coordination of care amongphysicians, other health care professionals and laycaregivers; (4) participation in activities and/or adult daycare programs; and (5) taking part in support groups andsupportive services.Nonpharmacologic TherapyNonpharmacologic therapies are those that employapproaches other than medication, such as cognitivetraining and behavioral interventions. As withpharmacologic therapies, no nonpharmacologictherapies have been shown to alter the course ofAlzheimer’s disease, although some are used with thegoal of maintaining cognitive function or helping thebrain compensate for impairments. Othernonpharmacologic therapies are intended to improvequality of life or reduce behavioral symptoms such asdepression, apathy, wandering, sleep disturbances,agitation and aggression. A wide range ofnonpharmacologic interventions have been proposed orstudied, although few have sufficient evidencesupporting their effectiveness. There is some evidencethat specific nonpharmacologic therapies may improveor stabilize cognitive function, performance of dailyactivities, behavior, mood and quality of life.(82)
Prevalenceone in nine people age 65 andolder has Alzheimer’s disease.3 # 3# 3 #3 # 3
15Estimates from selected studies on the prevalence andcharacteristics of people with Alzheimer’s and otherdementias vary depending on how each study wasconducted. Data from several studies are used in thissection (for data sources and study methods, see theAppendices). Most estimates are from a new studyusing the same methods as the study that providedestimates in previous years’ Facts and Figuresreports, but with updated data.(83), A1Although someof the estimates are slightly different than estimatesin previous Facts and Figures reports, researchersconsider them to be statistically indistinguishablefrom previous estimates when accounting for marginsof error.Prevalence of Alzheimer’s Diseaseand Other DementiasAn estimated 5.2 million Americans of all ageshave Alzheimer’s disease in 2013. This includes anestimated 5 million people age 65 and older(83), A1and approximately 200,000 individuals under age65 who have younger-onset Alzheimer’s.(84)• 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.(83)• Of those with Alzheimer’s disease, an estimated4 percent are under age 65, 13 percent are 65 to 74,44 percent are 75 to 84, and 38 percent are 85or older.(83), A3The estimated prevalence for people age 65 and oldercomes from a new study using the latest data fromthe 2010 U.S. Census and the Chicago Health andAging Project (CHAP), a population-based study ofchronic health diseases of older people. Although thisestimate is slightly lower than the estimate presentedin previous Facts and Figures reports, it does notrepresent a real change in prevalence. According to thelead author of both the original and the new studieson the prevalence of Alzheimer’s, “Statistically, [theestimates] are comparable, and, more importantly,both old and new estimates continue to show that theburden [Alzheimer’s disease] places on the population,short of any effective preventive interventions, is goingto continue to increase substantially.”(83)In addition to estimates from CHAP, the nationalprevalence of Alzheimer’s disease and all forms ofdementia have been estimated from other population-based studies, including the Aging, Demographics, andMemory Study (ADAMS), a nationally representativesample of older adults.(85-86), A4National estimatesof the prevalence of all forms of dementia are notavailable from CHAP, but based on estimates fromADAMS, 13.9 percent of people age 71 and older inthe United States have dementia.(85)Prevalence studies such as CHAP and ADAMS aredesigned so that all individuals with dementia aredetected. But in the community, only about halfof those who would meet the diagnostic criteriafor Alzheimer’s disease and other dementias havereceived a diagnosis of dementia from a physician.(87)Because Alzheimer’s disease is under-diagnosed,half of the estimated 5.2 million Americans withAlzheimer’s may not know they have it. 2013 Alzheimer’s Disease Facts and Figures PrevalenceMillions of Americans have Alzheimer’s disease and other dementias.The number of Americans with Alzheimer’s disease and otherdementias will grow each year as the number and proportion of theU.S. population age 65 and older continue to increase. The number willescalate rapidly in coming years as the baby boom generation ages.
16 Prevalence 2013 Alzheimer’s Disease Facts and FiguresThe estimates from CHAP and ADAMS are based oncommonly accepted criteria for diagnosing Alzheimer’sdisease that have been used since 1984. In 2009, anexpert workgroup was convened by the Alzheimer’sAssociation and the NIA to recommend updateddiagnostic criteria and guidelines, as described inthe Overview (pages 8-9). These proposed new criteriaand guidelines were published in 2011.(8-11)If Alzheimer’sdisease can be detected earlier, in the stages ofpreclinical Alzheimer’s and/or MCI due to Alzheimer’sas defined by the 2011 criteria, the number of peoplereported to have Alzheimer’s disease would be muchlarger than what is presented in this report.Prevalence of Alzheimer’s Disease andOther Dementias in Women and MenMore women than men have Alzheimer’s disease andother dementias. Almost two-thirds of Americans withAlzheimer’s are women.(83), A5Of the 5 million peopleage 65 and older with Alzheimer’s in the United States,3.2 million are women and 1.8 million are men.(83), A5Based on estimates from ADAMS, 16 percent ofwomen age 71 and older have Alzheimer’s disease andother dementias compared with 11 percent of men.(85, 88)The larger proportion of older women who haveAlzheimer’s disease and other dementias is primarilyexplained by the fact that women live longer,on average, than men.(88-89)Many studies of theage-specific incidence (development of new cases) ofAlzheimer’s disease(89-95)or any dementia(90-92, 96-97)havefound no significant difference by sex. Thus, womenare not more likely than men to develop dementia atany given age.Prevalence of Alzheimer’s Disease andOther Dementias by Years of EducationPeople with fewer years of education appear to beat higher risk for Alzheimer’s and other dementias thanthose with more years of education.(91, 94, 97-99)Someof the possible reasons are explained in the RiskFactors for Alzheimer’s Disease section of theOverview (page 12).Prevalence of Alzheimer’s Disease andOther Dementias in Older Whites,African-Americans and HispanicsWhile most people in the United States living withAlzheimer’s and other dementias are non-Hispanicwhites, older African-Americans and Hispanics areproportionately more likely than older whites to haveAlzheimer’s disease and other dementias.(100-101)Data indicate that in the United States, older African-Americans are probably about twice as likely to haveAlzheimer’s and other dementias as older whites,(102)and Hispanics are about one and one-half times aslikely to have Alzheimer’s and other dementias as olderwhites.(103)Figure 1 shows the estimated prevalencefor each group, by age.Despite some evidence of racial differences in theinfluence of genetic risk factors on Alzheimer’s andother dementias, genetic factors do not appear toaccount for these large prevalence differences acrossracial groups.(104)Instead, health conditions such ashigh blood pressure and diabetes that may increaseone’s risk for Alzheimer’s disease and other dementiasare believed to account for these differences becausethey are more prevalent in African-American andHispanic people. Lower levels of education and othersocioeconomic characteristics in these communitiesmay also increase risk. Some studies suggest thatdifferences based on race and ethnicity do not persistin detailed analyses that account for these factors.(85, 91)There is evidence that missed diagnoses are morecommon among older African-Americans andHispanics than among older whites.(105-106)A recentstudy of Medicare beneficiaries found that Alzheimer’sdisease and other dementias had been diagnosed in8.2 percent of white beneficiaries, 11.3 percent ofAfrican-American beneficiaries and 12.3 percent ofHispanic beneficiaries.(107)Although rates of diagnosiswere higher among African-Americans than amongwhites, this difference was not as great as would beexpected based on the estimated differences found inprevalence studies, which are designed to detect allpeople who have dementia.
17 2013 Alzheimer’s Disease Facts and Figures PrevalenceIncidence and Lifetime Riskof Alzheimer’s DiseaseWhile prevalence is the number of existing cases of adisease in a population at a given time, incidence is thenumber of new cases of a disease that develop ina given time period. The estimated annual incidence(rate of developing disease in one year) of Alzheimer’sdisease appears to increase dramatically with age, fromapproximately 53 new cases per 1,000 people age 65 to74, to 170 new cases per 1,000 people age 75 to 84, to231 new cases per 1,000 people age 85 and older (the“oldest-old”).(108)Some studies have found that incidencerates drop off after age 90, but these findings arecontroversial. One analysis indicates that dementiaincidence may continue to increase and that previousobservations of a leveling off of incidence rates amongthe oldest-old may be due to sparse data for this group.(109)Because of the increasing number of people age 65and older in the United States, the annual number of newcases of Alzheimer’s and other dementias is projected todouble by 2050.(108)• Every 68 seconds, someone in the United Statesdevelops Alzheimer’s.A6• By mid-century, someone in the United States willdevelop the disease every 33 seconds.A6Lifetime risk is the probability that someone of a given agedevelops a condition during their remaining lifespan. Datafrom the Framingham Study were used to estimate lifetimerisks of Alzheimer’s disease and of any dementia.(110), A7The study found that 65-year-old women without dementiahad a 20 percent chance of developing dementia duringthe remainder of their lives (estimated lifetime risk),compared with a 17 percent chance for men. As shownin Figure 2 (page 18), for Alzheimer’s disease specifically,the estimated lifetime risk at age 65 was nearly one infive (17.2 percent) for women compared with one in11 (9.1 percent) for men.(110), A8As previously noted, thesedifferences in lifetime risks between women and men arelargely due to women’s longer life expectancy.Percentagefigure 1 Proportion of People Age 65 and Older with Alzheimer’s Disease and Other DementiasWhite African-American Hispanic7060504030201009.12.9 7.510.919.927.930.258.662.9Created from data from Gurland et al. (103)Age 65 to 74 75 to 84 85+
18 Prevalence 2013 Alzheimer’s Disease Facts and FiguresThe definition of Alzheimer’s disease and otherdementias used in the Framingham Study requireddocumentation of moderate to severe disease aswell as symptoms lasting a minimum of six months.Using a definition that also includes milder disease anddisease of less than six months’ duration, lifetime risksof Alzheimer’s disease and other dementias would bemuch higher than those estimated by this study.Estimates of the Number of Peoplewith Alzheimer’s Disease, by StateTable 2 (pages 21–22) summarizes the projected totalnumber of people age 65 and older with Alzheimer’sdisease by state for 2000, 2010 and 2025.A9Thepercentage changes in the number of people withAlzheimer’s between 2000 and 2010 and between2000 and 2025 are also shown. Note that the totalnumber of people with Alzheimer’s is larger for stateswith larger populations, such as California and NewYork. Comparable estimates and projections for othertypes of dementia are not available.As shown in Figure 3, between 2000 and 2025 somestates and regions across the country are expectedto experience double-digit percentage increases in thenumbers of people with Alzheimer’s due to increasesin the proportion of the population age 65 and older.The South and West are expected to experience50 percent and greater increases in numbers ofpeople with Alzheimer’s between 2000 and 2025.Some states (Alaska, Colorado, Idaho, Nevada, Utahand Wyoming) are projected to experience a doubling(or more) of the number of people with Alzheimer’s.Although the projected increases in the Northeast arenot nearly as marked as those in other regions of theUnited States, it should be noted that this region ofthe country currently has a large proportion of peoplewith Alzheimer’s relative to other regions because thisregion already has a high proportion of people age 65and older. The increasing number of individuals withAlzheimer’s will have a marked impact on states’ healthcare systems, as well as on families and caregivers.Created from data from Seshadri et al. (110)2520151050Men Women9.1%17.2%Age 65 75 85figure 2 estimated lifetime risks for alzheimer’s, by age and sex, from the framingham studyPercentage9.1%17.2%10.2%18.5%12.1%20.3%
19 2013 Alzheimer’s Disease Facts and Figures PrevalenceLooking to the FutureThe number of Americans surviving into their 80s, 90sand beyond is expected to grow dramatically due toadvances in medicine and medical technology, as wellas social and environmental conditions.(111)Additionally,a large segment of the American population — thebaby boom generation — has begun to reach the agerange of elevated risk for Alzheimer’s and otherdementias, with the first baby boomers having reachedage 65 in 2011. By 2030, the segment of the U.S.population age 65 and older is expected to growdramatically, and the estimated 72 million olderAmericans will make up approximately 20 percent ofthe total population (up from 13 percent in 2010).(111)0 – 24.0% 24.1% – 31.0% 31.1% – 49.0% 49.1% – 81.0% 81.1% – 127.0%Created from data from Hebert et al.A9Percentagefigure 3 Projected Changes Between 2000 and 2025 in Alzheimer’s Prevalence by State
20 Prevalence 2013 Alzheimer’s Disease Facts and FiguresAs the number of older Americans grows rapidly, sotoo will the numbers of new and existing cases ofAlzheimer’s disease, as shown in Figure 4.(83), A10• In 2000, there were an estimated 411,000 new casesof Alzheimer’s disease. For 2010, that number wasestimated to be 454,000 (a 10 percent increase);by 2030, it is projected to be 615,000 (a 50 percentincrease from 2000); and by 2050, 959,000(a 130 percent increase from 2000).(108)• By 2025, the number of people age 65 and older withAlzheimer’s disease is estimated to reach 7.1 million— a 40 percent increase from the 5 million age 65 andolder currently affected.(83), A11• By 2050, the number of people age 65 and older withAlzheimer’s disease may nearly triple, from 5 millionto a projected 13.8 million, barring the developmentof medical breakthroughs to prevent, slow or stop thedisease.(83), A10 Previous estimates suggest that thisnumber may be as high as 16 million.(112), A12Longer life expectancies and aging baby boomerswill also increase the number and percentage ofAmericans who will be among the oldest-old. Between2010 and 2050, the oldest-old are expected to increasefrom 14 percent of all people age 65 and older in theUnited States to 20 percent of all people age 65 andolder.(111)This will result in an additional 13 millionoldest-old people — individuals at the highest risk fordeveloping Alzheimer’s.(111)• By 2050, the number of Americans age 85 yearsand older will nearly quadruple to 21 million.(111)• In 2013, the 85-years-and-older population includesabout 2 million people with Alzheimer’s disease,or 40 percent of all people with Alzheimer’s age65 and older.(83)• When the first wave of baby boomers reaches age 85(in 2031), it is projected that more than 3 million peopleage 85 and older are likely to have Alzheimer’s.(83)1614121086420Millions of peoplewith Alzheimer’sYear 2010 2020 2030 2040 2050 Created from data from Hebert et al.(83), A10figure 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 Ages 65-74 Ages 75-84 Ages 85+18.104.22.1681.613.8
22 Prevalence 2013 Alzheimer’s Disease Facts and FiguresCreated from data from Hebert et al.A9Projected TotalNumbers (in 1,000s)with Alzheimer’sState 2000 2010 2025 2010 2025New Mexico 27.0 31.0 43.0 15 59New York 330.0 320.0 350.0 -3 6North Carolina 130.0 170.0 210.0 31 62North Dakota 16.0 18.0 20.0 13 25Ohio 200.0 230.0 250.0 15 25Oklahoma 62.0 74.0 96.0 19 55Oregon 57.0 76.0 110.0 33 93Pennsylvania 280.0 280.0 280.0 0 0Rhode Island 24.0 24.0 24.0 0 0South Carolina 67.0 80.0 100.0 19 49South Dakota 17.0 19.0 21.0 12 24Tennessee 100.0 120.0 140.0 20 40Texas 270.0 340.0 470.0 26 74Utah 22.0 32.0 50.0 45 127Vermont 10.0 11.0 13.0 10 30Virginia 100.0 130.0 160.0 30 60Washington 83.0 110.0 150.0 33 81West Virginia 40.0 44.0 50.0 10 25Wisconsin 100.0 110.0 130.0 10 30Wyoming 7.0 10.0 15.0 43 114table 2 (cont.) PROJECTIONS of TOTAL NUMBERS OF AMERICANS AGE 65 AND OLDER WITH ALZHEIMER’s, BY STATEPercentageChange in Alzheimer’s(Compared with 2000)
MORTALITY5Alzheimer’s is the sixth-leading cause of deathin the United states and the fifth-leading causeof death for individuals age 65 and older.
24 Mortality 2013 Alzheimer’s Disease Facts and FiguresDeaths from Alzheimer’s DiseaseIt is difficult to determine how many deaths arecaused by Alzheimer’s disease each year because ofthe way causes of death are recorded. According tofinal data from the National Center for Health Statisticsof the Centers for Disease Control and Prevention(CDC), 83,494 people died from Alzheimer’s diseasein 2010 (the most recent year for which final data areavailable).(113)The CDC considers a person to have diedfrom Alzheimer’s if the death certificate listsAlzheimer’s as the underlying cause of death, definedby the World Health Organization as “the disease orinjury which initiated the train of events leading directlyto death.”(114)However, death certificates for individualswith Alzheimer’s often list acute conditions such aspneumonia as the primary cause of death rather thanAlzheimer’s.(115-117)Severe dementia frequently causescomplications such as immobility, swallowingdisorders and malnutrition that can significantlyincrease the risk of other serious conditions that cancause death. One such condition is pneumonia, whichhas been found in several studies to be the mostcommonly identified cause of death among elderly peoplewith Alzheimer’s disease and other dementias.(118-119)The number of people with Alzheimer’s and otherdementias who die while experiencing theseconditions may not be counted among the number ofpeople who died from Alzheimer’s disease accordingto the CDC definition, even though Alzheimer’sdisease is likely a contributing cause of death. Thus,it is likely that Alzheimer’s disease is a contributingcause of death for more Americans than is indicatedby CDC data.The situation has been described as a “blurreddistinction between death with dementia and deathfrom dementia.”(120)According to CHAP data, anestimated 400,000 people died with Alzheimer’s in2010, meaning they died after developing Alzheimer’sdisease.A13Furthermore, according to Medicare data,one-third of all seniors who die in a given year havebeen previously diagnosed with Alzheimer’s oranother dementia.(107, 121)Although some seniors whodie with Alzheimer’s disease die from causes thatwere unrelated to Alzheimer’s, many of them diefrom Alzheimer’s disease itself or from conditions inwhich Alzheimer’s was a contributing cause, such aspneumonia. A recent study evaluated the contributionof individual common diseases to death using anationally representative sample of older adults, andit found that dementia was the second largestcontributor to death behind heart failure.(122)Thus, forpeople who die with Alzheimer’s disease and otherdementias, dementia is expected to be a significantdirect contributor to their deaths.In 2013, an estimated 450,000 people in the UnitedStates will die with Alzheimer’s.A13The true numberof deaths caused by Alzheimer’s is likely to besomewhere between the official estimated numbersof those dying from Alzheimer’s (as indicated bydeath certificates) and those dying with Alzheimer’s(that is, dying after developing Alzheimer’s).Regardless of the cause of death, among peopleage 70, 61 percent of those with Alzheimer’s areexpected to die before age 80 compared with30 percent of people without Alzheimer’s.(123)Alzheimer’s disease is officially listed as the sixth-leading causeof death in the United States.(113)It is the fifth-leading cause ofdeath for those age 65 and older.(113)However, it may cause evenmore deaths than official sources recognize.
25 2013 Alzheimer’s Disease Facts and Figures MortalityPublic Health Impact of Deathsfrom Alzheimer’s DiseaseAs the population of the United States ages,Alzheimer’s is becoming a more common cause ofdeath. While deaths from other major causes havedecreased significantly, deaths from Alzheimer’sdisease have increased significantly. Between 2000and 2010, deaths attributed to Alzheimer’s diseaseincreased 68 percent, while those attributed to thenumber one cause of death, heart disease, decreased16 percent (Figure 5).(113, 124)The increase in the numberand proportion of death certificates listing Alzheimer’sas the underlying cause of death reflects both changesin patterns of reporting deaths on death certificatesover time as well as an increase in the actual numberof deaths attributable to Alzheimer’s.Another way to describe the impact of Alzheimer’sdisease on mortality is through a statistic known aspopulation attributable risk. It represents the proportionof deaths (in a specified amount of time) in a populationthat may be preventable if a disease were eliminated.The population attributable risk of Alzheimer’s diseaseon mortality over five years in people age 65 andolder is estimated to be between 5 percent and15 percent.(125-126)This means that over the next fiveyears, 5 percent to 15 percent of all deaths in olderpeople can be attributed to Alzheimer’s disease.Created from data from the National Center for Health Statistics.(113,124)706050403020100-10-20-30-40-50Causeof DeathAlzheimer’s Stroke Prostate Breast Heart HIV disease cancer cancer disease -2%-23%-8%-16%-42%+ 68%Percentagefigure 5 percentage Changes in Selected Causes of Death (All Ages) Between 2000 and 2010
Alabama 1,523 31.9Alaska 85 12.0Arizona 2,327 36.4Arkansas 955 32.8California 10,856 29.1Colorado 1,334 26.5Connecticut 820 22.9Delaware 215 23.9District of Columbia 114 18.9Florida 4,831 25.7Georgia 2,080 21.5Hawaii 189 13.9Idaho 410 26.2Illinois 2,927 22.8Indiana 1,940 29.9Iowa 1,411 46.3Kansas 825 28.9Kentucky 1,464 33.7Louisiana 1,295 28.6Maine 502 37.8Maryland 986 17.1Massachusetts 1,773 27.1Michigan 2,736 27.7Minnesota 1,451 27.4Mississippi 927 31.2Missouri 1,986 33.2 Created from data from the National Center for Health Statistics.(113) State Number of Deaths Rate State Number of Deaths RateMontana 302 30.5Nebraska 565 30.9Nevada 296 11.0New Hampshire 396 30.1New Jersey 1,878 21.4New Mexico 343 16.7New York 2,616 13.5North Carolina 2,817 29.5North Dakota 361 53.7Ohio 4,109 35.6Oklahoma 1.015 27.1Oregon 1,300 33.9Pennsylvania 3,591 28.3Rhode Island 338 32.1South Carolina 1,570 33.9South Dakota 398 48.9Tennessee 2,440 38.4Texas 5,209 20.7Utah 375 13.6Vermont 238 38.0Virginia 1,848 23.1Washington 3,025 45.0West Virginia 594 32.1Wisconsin 1,762 31.0Wyoming 146 25.9U.S. Total 83,494 27.0 table 3 Number of Deaths and Annual Mortality Rate (per 100,000) Due to Alzheimer’s Disease, by State, 2010 Mortality 2013 Alzheimer’s Disease Facts and Figures26
27State-by-State Deaths fromAlzheimer’s DiseaseTable 3 provides information on the number ofdeaths due to Alzheimer’s by state in 2010, the mostrecent year for which state-by-state data areavailable. This information was obtained from deathcertificates and reflects the condition identified bythe physician as the underlying cause of death.The table also provides annual mortality rates bystate to compare the risk of death due to Alzheimer’sdisease across states with varying population sizes.For the United States as a whole, in 2010, themortality rate for Alzheimer’s disease was 27 deathsper 100,000 people.(113)Death Rates by AgeAlthough people younger than 65 can develop anddie from Alzheimer’s disease, the highest risk ofdeath from Alzheimer’s is in people age 65 or older.As seen in Table 4, death rates for Alzheimer’sincrease dramatically with age. Compared with therate of death due to any cause among people age65 to 74, death rates were 2.6 times as high forthose age 75 to 84 and 7.4 times as high for thoseage 85 and older. For diseases of the heart, mortalityrates were 2.9 times and 10.5 times as high,respectively. For all cancers, mortality rates were1.8 times as high and 2.6 times as high, respectively.In contrast, Alzheimer’s disease death rates were9.3 times as high for people age 75 to 84 and 49.9times as high for people 85 and older compared withthe Alzheimer’s disease death rate among peopleage 65 to 74.(113)The high death rate at older agesfor Alzheimer’s underscores the lack of a cure oreffective treatments for the disease.Duration of Illness fromDiagnosis to DeathStudies indicate that people age 65 and older survivean average of four to eight years after a diagnosis ofAlzheimer’s disease, yet some live as long as 20 yearswith Alzheimer’s.(126-131)This indicates the slow,insidious nature of the progression of Alzheimer’s. Onaverage, a person with Alzheimer’s disease will spendmore years (40 percent of the total number of yearswith Alzheimer’s) in the most severe stage of thedisease than in any other stage.(123)Much of this timewill be spent in a nursing home, as nursing homeadmission by age 80 is expected for 75 percent ofpeople with Alzheimer’s compared with only 4 percentof the general population.(123)In all, an estimatedtwo-thirds of those dying of dementia do so in nursinghomes, compared with 20 percent of cancer patientsand 28 percent of people dying from all otherconditions.(132)Thus, the long duration of illness beforedeath contributes significantly to the public healthimpact of Alzheimer’s disease.*Reflects average death rate for ages 45 and older.Created from data from the National Center for Health Statistics.(113)Age 2000 2002 2004 2006 2008 201045–54 0.2 0.1 0.2 0.2 0.2 0.355–64 2.0 1.9 1.8 2.1 2.2 2.165–74 18.7 19.6 19.5 19.9 21.1 19.875–84 139.6 157.7 168.5 175.0 192.5 184.585+ 667.7 790.9 875.3 923.4 1,002.2 987.1Rate* 18.1 20.8 22.6 23.7 25.8 25.1table 4 U.S. Alzheimer’s Death Rates (per 100,000) by Age 2013 Alzheimer’s Disease Facts and Figures Mortality
CAREGIVING@in 2012, americans provided 17.5 billion hours of unpaid careto people with Alzheimer’s disease and other dementias.17.5B17.5
29 2013 Alzheimer’s Disease Facts and Figures Caregiving(66 percent versus 71 percent non-Hispanic white) ormarital status (70 percent versus 71 percent married).Almost half of caregivers took care of parents.(140)The National Alliance for Caregiving (NAC)/AARPfound that 30 percent of caregivers had children under18 years old living with them; such caregivers aresometimes called “sandwich caregivers” because theysimultaneously provide care for two generations.(141)Ethnic and Racial Diversity in CaregivingAmong caregivers of people with Alzheimer’s diseaseand other dementias, the NAC/AARP found thefollowing:(141)• A greater proportion of white caregivers assist a parent than caregivers of individuals from other racial/ ethnic groups (54 percent versus 38 percent).• On average, Hispanic and African-American caregivers spend more time caregiving (approximately 30 hours per week) than non-Hispanic white caregivers (20 hours per week) and Asian- American caregivers (16 hours per week).• Hispanic (45 percent) and African-American caregivers (57 percent) are more likely to experience high burden from caregiving than whites and Asian-Americans (about one-third and one-third, respectively).As noted in the Prevalence section of this report, theracial/ethnic distribution of people with Alzheimer’sdisease will change dramatically by 2050. Given thegreater likelihood of acquiring Alzheimer’s diseaseamong African-Americans and Hispanics coupled withthe increasing number of African-American andHispanic older adults by 2050, it can be assumed thatfamily caregivers will be more ethnically and raciallydiverse over the next 35 years.unpaid caregiversUnpaid caregivers are primarily immediate familymembers, but they also may be other relatives andfriends. In 2012, these people provided an estimated17.5 billion hours of unpaid care, a contribution tothe nation valued at over $216 billion, which isapproximately half of the net value of Wal-Mart salesin 2011 ($419 billion)(135)and more than eight timesthe total sales of McDonald’s in 2011 ($27 billion).(136)Eighty percent of care provided in the communityis provided by unpaid caregivers (most often familymembers), while fewer than 10 percent of older adultsreceive all of their care from paid caregivers.(137)Who Are the Caregivers?Several sources have examined the demographicbackground of family caregivers of people withAlzheimer’s disease and other dementias.(138), A15Data from the 2010 Behavioral Risk Factor SurveillanceSystem (BRFSS) survey conducted in Connecticut,New Hampshire, New Jersey, New York andTennessee(138)found that 62 percent of caregivers ofpeople with Alzheimer’s disease and other dementiaswere women; 23 percent were 65 years of age andolder; 50 percent had some college education orbeyond; 59 percent were currently employed, a studentor homemaker; and 70 percent were married or in along-term relationship.(138)The Aging, Demographics, and Memory Study (ADAMS),based on a nationally representative subsample of olderadults from the Health and Retirement Survey,(139)compared two types of caregivers: those caring forpeople with dementia and those caring for people withcognitive problems that did not reach the threshold ofdementia. The caregiver groups did not differsignificantly by age (60 versus 61, respectively), gender(71 percent versus 81 percent female), raceCaregiving refers to attending to another individual’s healthneeds. Caregiving often includes assistance with one or moreactivities of daily living (ADLs; such as bathing and dressing).(133-134)More than 15 million Americans provide unpaid care for peoplewith Alzheimer’s disease and other dementias.A14
30 Caregiving 2013 Alzheimer’s Disease Facts and FiguresCaregiving TasksThe care provided to people with Alzheimer’s diseaseand other dementias is wide-ranging and in someinstances all-encompassing. The types of dementiacare provided are shown in Table 5.Though the care provided by family members ofpeople with Alzheimer’s disease and other dementiasis somewhat similar to the help provided by caregiversof people with other diseases, dementia caregiverstend to provide more extensive assistance. Familycaregivers of people with dementia are more likelythan caregivers of other older people to assist with anyADL (Figure 6). More than half of dementia caregiversreport providing help with getting in and out of bed,and about one-third of family caregivers provide help totheir care recipients with getting to and from the toilet,bathing, managing incontinence and feeding (Figure 6).These findings suggest the heightened degree ofdependency experienced by some people withAlzheimer’s disease and other dementias. Fewercaregivers of other older people report providing helpwith each of these types of care.(141)In addition to assisting with ADLs, almost two-thirdsof caregivers of people with Alzheimer’s and otherdementias advocate for their care recipient withgovernment agencies and service providers (64 percent),and nearly half arrange and supervise paid caregiversfrom community agencies (46 percent). By contrast,caregivers of other older adults are less likely to advocatefor their family member (50 percent) and supervisecommunity-based care (33 percent).(141)Caring for aperson with dementia also means managing symptomsthat family caregivers of people with other diseases maynot face, such as neuropsychiatric symptoms and severebehavioral problems.Help with instrumental activities of daily living (IADLs), such as household chores, shopping, preparing meals, providingtransportation, 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 helpingthe 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.(142)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.table 5 Dementia Caregiving Tasks
31 2013 Alzheimer’s Disease Facts and Figures CaregivingWhen a person with Alzheimer’s or other dementiamoves to an assisted living residence or nursing home,the help provided by his or her family caregiver usuallychanges from hands-on, ADL types of care to visiting,providing emotional support to the relative in residentialcare, interacting with facility staff and advocating forappropriate care for their relative. However, somefamily caregivers continue to help with bathing,dressing and other ADLs.(143-145)Admitting a relative toa residential care setting (such as a nursing home) hasmixed effects on the emotional and psychologicalwell-being of family caregivers. Some studies suggestthat distress remains unchanged or even increasesafter a relative is admitted to a residential care facility,but other studies have found that distress declinessignificantly after admission.(145-146)The relationshipbetween the caregiver and person with dementia mayexplain these discrepancies. For example, husbands,wives and daughters were significantly more likely toindicate persistent burden up to 12 months followingplacement than other family caregivers, while husbandswere more likely than other family caregivers to indicatepersistent depression up to a year following a relative’sadmission to a residential care facility.(146)Duration of CaregivingCaregivers of people with Alzheimer’s and otherdementias provide care for a longer time, on average,than do caregivers of older adults with other conditions.As shown in Figure 7 (page 32), 43 percent ofcaregivers of people with Alzheimer’s and otherdementias provide care for one to four years comparedwith 33 percent of caregivers of people withoutdementia. Similarly, 32 percent of dementia caregiversprovide care for over five years compared with28 percent of caregivers of people without dementia.(141)Caregivers of people with Alzheimer’s and other dementias Caregivers of other older people Getting in and Dressing Getting to and Bathing Managing Feeding out of bed from the toilet incontinence and diapers6050403020100Created from data from the National Alliance for Caregiving and AARP.(141)54%42%40%31% 32%26%31%23%31%16%31%14%Activityfigure 6 Proportion of Caregivers of People with Alzheimer’s and Other Dementias vs. Caregivers of Other Older People Who Provide Help with Specific Activities of Daily Living, United States, 2009Percentage
32 Caregiving 2013 Alzheimer’s Disease Facts and FiguresHours of Unpaid Care andEconomic Value of CaregivingIn 2012, the 15.4 million family and other unpaidcaregivers of people with Alzheimer’s disease and otherdementias provided an estimated 17.5 billion hours ofunpaid care. This number represents an average of 21.9hours of care per caregiver per week, or 1,139 hours ofcare per caregiver per year.A16With this care valued at$12.33 per hour,A17the estimated economic value ofcare provided by family and other unpaid caregivers ofpeople with dementia was $216.4 billion in 2012.Table 6 (pages 34-35) shows the total hours of unpaidcare as well as the value of care provided by family andother unpaid caregivers for the United States and eachstate. Unpaid caregivers of people with Alzheimer’sand other dementias provide care valued at more than$1 billion in each of 39 states. Unpaid caregivers in eachof the four most populous states — California, Florida,New York and Texas — provided care valued at morethan $14 billion.Some studies suggest that family caregivers provideeven more intensive daily support to people who reach aclinical threshold of dementia. For example, a recentreport from ADAMS found that family caregivers ofpeople who were categorized as having dementia spentnine hours per day providing help to their relatives.(140)Impact of Alzheimer’s Disease CaregivingCaring for a person with Alzheimer’s and otherdementias poses special challenges. For example,people with Alzheimer’s disease experience losses injudgment, orientation and the ability to understand andcommunicate effectively. Family caregivers must oftenhelp people with Alzheimer’s manage these issues. Thepersonality and behavior of a person with Alzheimer’sare affected as well, and these changes are oftenamong the most challenging for family caregivers.(142)Individuals with dementia may also require increasinglevels of supervision and personal care as the diseaseprogresses. As these symptoms worsen with theprogression of a relative’s dementia, the care required offamily members can result in family caregivers’experiencing increased emotional stress, depression,impaired immune system response, health impairments,lost wages due to disruptions in employment, and5045403530252015105032%28%43%33%23%34%4%2%Created from data from the National Alliance for Caregiving and AARP.(141)Duration Occasionally Less than 1 year 1–4 years 5+ yearsCaregivers of people with Alzheimer’s and other dementias Caregivers of other older peoplefigure 7 Proportion of Alzheimer’s and Dementia Caregivers vs. caregivers of other older people by duration of caregiving, United States, 2009Percentage
33 2013 Alzheimer’s Disease Facts and Figures Caregivingdepleted income and finances.(147-152), A15The intimacy andhistory of experiences and memories that are often part ofthe relationship between a caregiver and care recipient mayalso be threatened due to the memory loss, functionalimpairment and psychiatric/behavioral disturbances thatcan accompany the progression of Alzheimer’s.Caregiver Emotional Well-BeingAlthough caregivers report some positive feelings aboutcaregiving, including family togetherness and thesatisfaction of helping others,A15they also report high levelsof stress over the course of providing care:• Based on a Level of Care Index that combined thenumber of hours of care and the number of ADL tasksperformed by the caregiver, fewer dementia caregivers inthe 2009 NAC/AARP survey were classified in the lowestlevel of burden compared with caregivers of peoplewithout dementia (17 percent versus 31 percent,respectively).(141)• Sixty-one percent of family caregivers of people withAlzheimer’s and other dementias rated the emotionalstress of caregiving as high or very high (Figure 8).A15• Most family caregivers report “a good amount” to “agreat deal” of caregiving strain concerning financial issues(56 percent) and family relationships (53 percent).A15• Earlier research in smaller samples found that overone-third (39 percent) of caregivers of people withdementia suffered from depression compared with17 percent of non-caregivers.(153-154)A meta-analysis ofresearch comparing caregivers affirmed this gulf in theprevalence of depression between caregivers of peoplewith dementia and non-caregivers.(151)In the ADAMSsample, 44 percent of caregivers of people with dementiaindicated depressive symptoms, compared with27 percent of caregivers of people who had cognitiveimpairment but no dementia.(140)• In the 2009 NAC/AARP survey, caregivers most likely toindicate stress were women, older, residing with the carerecipient, white or Hispanic, and believed there was nochoice in taking on the role of caregiver.(141)• When caregivers report being stressed because of theimpaired person’s behavioral symptoms, it increases thechance that they will place the care recipient in a nursinghome.(138, 141, 155)• Seventy-seven percent of family caregivers of peoplewith Alzheimer’s disease and other dementias said thatthey somewhat agree to strongly agree that there is no“right or wrong” when families decide to place theirfamily member in a nursing home. Yet many suchcaregivers experience feelings of guilt, emotionalupheaval and difficulties in adapting to the admissiontransition (for example, interacting with care staff todetermine an appropriate care role for the familymember).(143, 145, 156-157), A15• Demands of caregiving may intensify as people withdementia near the end of life. In the year before theperson’s death, 59 percent of caregivers felt they were“on duty” 24 hours a day, and many felt that caregivingduring this time was extremely stressful. One study ofend-of-life care found that 72 percent of family caregiverssaid they experienced relief when the person withAlzheimer’s disease or other dementia died.(145, 158-159)806040200figure 8 Proportion of Alzheimer’s and Dementia Caregivers Who Report High or Very High Emotional and Physical Stress Due to CaregivingHigh to very high Not high to somewhat high61%39%43%57%Created from data from the Alzheimer’s Association.A15Emotional stress ofcaregivingPhysical stress ofcaregivingStressPercentage
34 Higher Health Care AD/D Caregivers Hours of Unpaid Care Value of Unpaid Care Costs of CaregiversState (in thousands) (in millions) (in millions of dollars) (in millions of dollars)Alabama 297 338 $4,171 $161Alaska 33 37 $459 $26Arizona 303 345 $4,250 $143Arkansas 172 196 $2,419 $92California 1,528 1,740 $21,450 $830Colorado 231 264 $3,250 $121Connecticut 175 200 $2,461 $132Delaware 51 58 $715 $37District of Columbia 26 30 $368 $24Florida 1,015 1,156 $14,258 $630Georgia 495 563 $6,944 $235Hawaii 64 73 $895 $38Idaho 76 87 $1,067 $37Illinois 584 665 $8,202 $343Indiana 328 373 $4,604 $190Iowa 135 154 $1,897 $81Kansas 149 170 $2,099 $88Kentucky 266 303 $3,731 $152Louisiana 226 258 $3,180 $134Maine 68 77 $951 $50Maryland 282 321 $3,962 $184Massachusetts 325 370 $4,557 $262Michigan 507 577 $7,118 $291Minnesota 243 277 $3,415 $157Mississippi 203 231 $2,854 $115table 6 Number of Alzheimer’s and Dementia (AD/D) Caregivers, Hours of Unpaid Care, Economic Value of the Care and Higher Health Care Costs of Caregivers, by State, 2012* Caregiving 2013 Alzheimer’s Disease Facts and Figures
35 Higher Health Care AD/D Caregivers Hours of Unpaid Care Value of Unpaid Care Costs of CaregiversState (in thousands) (in millions) (in millions of dollars) (in millions of dollars)Missouri 309 351 $4,333 $187Montana 47 54 $663 $27Nebraska 80 92 $1,128 $49Nevada 135 153 $1,889 $67New Hampshire 64 73 $905 $44New Jersey 439 500 $6,166 $289New Mexico 105 120 $1,480 $61New York 1,003 1,142 $14,082 $726North Carolina 437 497 $6,132 $245North Dakota 28 32 $400 $19Ohio 589 671 $8,267 $361Oklahoma 214 244 $3,004 $121Oregon 167 191 $2,352 $96Pennsylvania 667 760 $9,369 $447Rhode Island 53 60 $746 $38South Carolina 287 327 $4,031 $157South Dakota 36 41 $510 $22Tennessee 414 472 $5,815 $229Texas 1,294 1,474 $18,174 $665Utah 137 156 $1,918 $60Vermont 30 34 $416 $20Virginia 443 504 $6,216 $241Washington 323 368 $4,538 $190West Virginia 108 123 $1,520 $72Wisconsin 189 215 $2,656 $120Wyoming 27 31 $385 $17U.S. Totals 15,410 17,548 $216,373 $9,121*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.A14, A16, A17, A18table 6 (cont.) 2013 Alzheimer’s Disease Facts and Figures Caregiving
36 Caregiving 2013 Alzheimer’s Disease Facts and FiguresCaregiver Physical HealthFor some caregivers, the demands of caregiving maycause declines in their own health. Specifically, familycaregivers of people with dementia may experiencegreater risk of chronic disease, physiologicalimpairments, increased health care utilization andmortality than those who are not caregivers.(149)Forty-three percent of caregivers of people withAlzheimer’s disease and other dementias reportedthat the physical impact of caregiving was high to veryhigh (Figure 8).A15General HealthSeventy-five percent of caregivers of people withAlzheimer’s disease and other dementias reported thatthey were “somewhat” to “very concerned” aboutmaintaining their own health since becoming acaregiver.A15Dementia caregivers were more likely thannon-caregivers to report that their health was fair orpoor.(149)Dementia caregivers were also more likely thancaregivers of other older people to say that caregivingmade their health worse.(141,160)Data from the 2010BRFSS caregiver survey found that 7 percent ofdementia caregivers say the greatest difficulty ofcaregiving is that it creates or aggravates their ownhealth problems compared with 2 percent of othercaregivers.(138)Other studies suggest that caregivingtasks have the positive effect of keeping oldercaregivers more physically active than non-caregivers.(161)Physiological ChangesThe chronic stress of caregiving is associated withphysiological changes that indicate risk of developingchronic conditions. For example, a series of recentstudies found that under certain conditions someAlzheimer’s caregivers were more likely to haveelevated biomarkers of cardiovascular disease risk andimpaired kidney function risk than those who were notcaregivers.(162-167)Overall, the literature remains fairlyconsistent in suggesting that the chronic stress ofdementia care can have potentially negative influenceson caregiver health.Caregivers of a spouse with Alzheimer’s or otherdementias are more likely than married non-caregiversto have physiological changes that may reflect decliningphysical health, including high levels of stresshormones,(168)reduced immune function,(147, 169)slowwound healing,(170)increased incidence of hypertension,(171)coronary heart disease(172)and impaired endothelialfunction (the endothelium is the inner lining of the bloodvessels). Some of these changes may be associated withan increased risk of cardiovascular disease.(173)Health Care UtilizationThe physical and emotional impact of dementiacaregiving is estimated to have resulted in $9.1 billion inhealth care costs in the United States in 2012.A18Table 6shows the estimated higher health care costs forAlzheimer’s and dementia caregivers in each state.Dementia caregivers were more likely to visit theemergency department or be hospitalized in thepreceding six months if the care recipient wasdepressed, had low functional status or had behavioraldisturbances than if the care recipient did not exhibitthese symptoms.(174)MortalityThe health of a person with dementia may also affect thecaregiver’s risk of dying, although studies have reportedmixed findings on this issue. In one study, caregivers ofspouses who were hospitalized and had medical recordsof dementia were more likely to die in the following yearthan caregivers whose spouses were hospitalized butdid not have dementia, even after accounting for theage of caregivers.(175)However, other studies havefound that caregivers have lower mortality rates thannon-caregivers.(176-177)One study reported that higherlevels of stress were associated with higher rates ofmortality in both caregivers and non-caregivers.(177)Thesefindings suggest that it is high stress, not caregiving perse, that increases the risk of mortality. Such resultsemphasize that dementia caregiving is a complexundertaking; simply providing care to someone withAlzheimer’s disease or other dementia may notconsistently result in stress or negative health problems
37 2013 Alzheimer’s Disease Facts and Figures Caregivingfor caregivers. Instead, the stress of dementia caregivingis influenced by a number of other factors, such asdementia severity, how challenging the caregiversperceive certain aspects of care to be, available socialsupport and caregiver personality. All of these factors areimportant to consider when understanding the healthimpact of caring for a person with dementia.(178)Caregiver EmploymentAmong caregivers of people with Alzheimer’s diseaseand other dementias, about 60 percent reported beingemployed full- or part-time.(141)Employed dementiacaregivers indicate having to make major changes totheir work schedules because of their caregivingresponsibilities. Sixty-five percent said they had to go inlate, leave early or take time off, and 20 percent had totake a leave of absence. Other work-related changespertaining to caregiving are summarized in Figure 9.A15Interventions that May ImproveCaregiver OutcomesIntervention strategies to support family caregiversof people with Alzheimer’s disease have beendeveloped and evaluated. The types and focus of theseinterventions are summarized in Table 7 (page 38).(179)In general, these interventions aim to lessen negativeaspects of caregiving with the goal of improving healthoutcomes of dementia caregivers. Methods used toaccomplish this objective include enhancing caregiverstrategies to manage dementia-related symptoms,bolstering resources through enhanced social supportand providing relief/respite from daily care demands.Desired outcomes of these interventions includedecreased caregiver stress and depression and delayednursing home admission of the person with dementia.figure 9 effect of caregiving on work: work-related changes among caregivers of people with alzheimer’s disease and other dementiasHad to go inlate/leave early/take time offEffect100806040200Created from data from the Alzheimer’s Association.A15Had to take aleave of absenceHad to go fromworking full- topart-timeHad to take a lessdemanding jobHad to turndown apromotionLost jobbenefitsHad to give upworking entirelyChose earlyretirementSaw workperformance sufferto point of possibledismissalPercentage8%9%9%10%11%11%13%20%65%
38 Caregiving 2013 Alzheimer’s Disease Facts and FiguresCharacteristics of effective caregiver interventionsinclude programs that are administered over longperiods of time, interventions that approach dementiacare as an issue for the entire family, and interventionsthat train dementia caregivers in the managementof behavioral problems.(180-182)Multidimensionalinterventions appear particularly effective. Theseapproaches combine individual consultation, familysessions and support, and ongoing assistance to helpdementia caregivers manage changes that occur asthe disease progresses. Two examples of successfulmultidimensional interventions are the New YorkUniversity Caregiver Intervention(183-184)and theResources for Enhancing Alzheimer’s CaregiverHealth (REACH) II programs.(152, 179, 185-187)Although less consistent in their demonstrated benefits,support group strategies and respite services such asadult day programs may offer encouragement or reliefto enhance caregiver outcomes. The effects ofpharmacological therapies for treating symptoms ofdementia (for example, acetylcholinesterase inhibitors,memantine, antipsychotics and antidepressants) alsoappear to modestly reduce caregiver stress.(188)Several sources (179, 182, 189-195)recommend that caregiverservices identify “the risk factors and outcomes uniqueto each caregiver”(182)when selecting caregiverinterventions. More work is needed, however, in testingthe efficacy of these support programs among differentcaregiver groups in order to ensure their benefits forcaregivers across diverse clinical, racial, ethnic,socioeconomic and geographic contexts.(196)Type of Intervention DescriptionIncludes a structured program that provides information about the disease, resourcesand services and about how to expand skills to effectively respond to symptoms ofthe disease (i.e., cognitive impairment, behavioral symptoms and care-related needs).Includes lectures, discussions and written materials and is led by professionals withspecialized training. Focuses on building support among participants and creating a setting in which to discussproblems, successes and feelings regarding caregiving. Group members recognize thatothers have similar concerns. Interventions provide opportunities to exchange ideas andstrategies that are most effective. These groups may be professionally or peer-led.Involves a relationship between the caregiver and a trained therapy professional. Therapistsmay teach such skills as self-monitoring; challenge negative thoughts and assumptions; helpdevelop problem-solving abilities; and focus on time management, overload, management ofemotions and re-engagement in pleasant activities and positive experiences. Includes various combinations of interventions such as psychoeducational, supportive,psychotherapy and technological approaches. These interventions are led by skilledprofessionals.PsychoeducationalSupportivePsychotherapyMulticomponentCreated from data from Sörensen et al.(179)table 7 type and focus of caregiver interventions