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TheNEW ENGLAND JOURNAL ofMEDICINE

september 22, 2011

n engl j med 365;12 nejm.org september 22, 2011 1069

driving examination. I flunkedit miserably, he recalled. Dono-hue consulted his physician, un-derwent tests, and learned that hehad early Alzheimers disease. Hisdoctor told him, Take this medi-cation, call me in a year, and callthe Alzheimers Association.

Devastated, Donohue calledthat organizations local office.By volunteering there, he met

other people with early-stage dis-ease, helped to launch some pro-grams for them, and now, 5 yearslater, serves on an advisory com-mittee about services for peoplewith newly diagnosed Alzheimersand their families. Recently, heand several friends with the con-dition entered a new programwhere theyll serve as mentors

for others with a new Alzheimersdiagnosis.

Theres a great loneliness outthere, Donohue said. It comesfrom the stereotype that were alldrooling in a corner, even thoughmost people living with the dis-ease are in community settingsrather than nursing homes. Mycognition remains good, and un-til recently my memory remained

reasonably good. These friend-ships are so important to me.As we prepare for an explo-

sion in the number of Americanswith Alzheimers disease (see linegraph),1efforts to achieve earlierand better diagnosis of dementiahave become key components ofmany of the roughly two dozenstate plans for confronting the

epidemic, including Minnesotas.Such a recommendation alsoseems likely to figure into thenational strategic plan for address-ing Alzheimers, whose formula-tion was mandated by a law passedin January.

Current recommendations bythe federal government and pri-vate groups discourage doctorsfrom actively searching for earlydementia by using brief screeningtests for cognitive impairment,although the National Instituteon Aging (NIA) has stated thatearly diagnosis of Alzheimers isbeneficial. The U.S. Preventive

Services Task Force says there isinsufficient evidence to recom-mend routine dementia screeningin older adults, stating insteadthat physicians should assess cog-nitive function whenever cogni-tive impairment or deterioration issuspected. Guidelines may changeif ongoing studies show that cog-nitive screening, by identifying

Confronting Alzheimers DiseaseSusan Okie, M.D.

At the age of 69, a year after retiring from hispractice as a Minneapolis trial lawyer, MikeDonohue noticed his driving skills deteriorating.His wife persuaded him to undergo a simulated

The New England Journal of Medicine

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Copyright 2011 Massachusetts Medical Society. All rights reserved.

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n engl j med 365;12 nejm.org september 22, 20111070

dementia earlier, may lead to im-proved care of both dementia andother chronic conditions in affect-ed patients, potentially reducinghealth care costs. In April, theNIA and the Alzheimers Associ-ation published new diagnosticcriteria expanding the definitionof Alzheimers to include somecases of mild impairment ofmemory, reasoning, or visualperception.2 Under health carereform, providers may now billMedicare for assessment of cog-nitive function in older adults,through direct observation andreports from patients, familymembers, and others, as part ofannual wellness visits. An ex-

pert committee is evaluating therelative merits of various screen-ing tests at the request of theCenters for Medicare and Medic-aid Services.

An estimated 5.4 millionAmericans 65 years of age orolder have Alzheimers disease,the commonest cause of demen-tia and the sixth-leading cause

of death in the United States.The number is projected to rise to7.7 million by 2030, as the BabyBoom generation ages, and to be-tween 11 million and 16 millionby 2050. Spending this year by thefederal Medicare and Medicaidprograms for people with Alzhei-mers is estimated at $130 billion,according to the Centers for Dis-ease Control and Prevention. Grimpredictions for the rising cost ofAlzheimers care which maytop $1 trillion by 2050 haveprompted calls for planning atevery level of government and foridentifying strategies to reducecosts.

About 10 to 11% of people 70

to 89 years of age have dementia,according to neurologist RonaldPetersen, chair of the AdvisoryCouncil on Alzheimers Research,Care, and Services (the new paneltasked with developing a nationalAlzheimers plan) and directorof the Mayo Clinic Study on Ag-ing, a prospective population-based study of cognitive impair-

ment and dementia in elderlyresidents of Olmsted County, Min-nesota. National insurance datashow that between 2007 and 2009,11.1% of Medicare beneficiarieshad at least one claim for Alz-heimers or another dementia. An-

other 15% of the Olmsted Countyresidents in the Mayo study havemild cognitive impairment, a lesssevere condition with numerouspossible causes; each year, about10% of these people go on to de-velop dementia, Petersen said.

Dementia is strikingly under-diagnosed. Studies show that morethan half of patients who meetstandardized criteria for demen-tia dont have the diagnosis noted

in their medical records sowhen they get referred or whensomeone else uses the medicalrecord . . . theres nothing totell the receiver that this is aperson with dementia, said KatieMaslow, an Alzheimers research-er at the Institute of Medicine.Experts say that physicians fre-quent failure to make or recordthe diagnosis stems from insuf-ficient education about recogniz-ing early cognitive impairment,as well as from stigma and thefear and hopelessness that de-mentia evokes in both the publicand physicians. Lacking effectivetreatments to slow dementiasprogression, some physicians pre-scribe Alzheimers drugs withoutmentioning the disease by name,fearing that the news might de-press patients or make them

suicidal. Families of people withAlzheimers often keep it a secretfrom friends. Alzheimers is man-aged in this kind of paternalisticway that used to be common incancer care, with many physiciansbelieving youre better off notknowing, said J. Riley McCarten,medical director of the GeriatricResearch Education and Clinical

Confronting Alzheimers Disease

ProjectedNo.ofAmericans

65YrOld

withAlzheimersDisease(millions)

10.0

11.0

12.0

13.0

14.0

4.0

5.0

1.0

6.0

2.0

3.0

0.0

7.0

8.0

9.0

2010 2015 2020 2025 2030 2035 2040 2045 2050

5.1 5.3

5.6

6.5

7.8

9.5

11.2

12.7

13.5

Projected Number of Americans 65 Years of Age or Older with Alzheimers Disease.

Data are from the Alzheimers Association.1




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1071

Center at the Minneapolis Veter-ans Affairs Medical Center. Headded that although patients andfamilies are predictably upset tolearn the diagnosis, many arealso relieved to have an explana-tion for memory loss, behavioralchanges, or other symptoms. Itsrare that someone would eversay, I wish you had never donean evaluation, he said.

Earlier diagnosis enables pa-tients and families to preparefor coping with the illness, in-cluding making time for long-desired trips and reunions andparticipating in legal and f inan-cial planning. People with earlyAlzheimers are usually still com-petent to specify their wishesconcerning medical treatment andto complete an advance directive,which can make future decisions

regarding health care easier andless emotionally charged for phy-sicians and families. Family mem-bers, especially the primary care-giver, can be educated aboutmanaging symptoms such asmemory loss and behavioralchanges and can get help address-ing safety issues. A randomizedclinical trial has shown that pro-

viding primary caregivers with ed-ucation, counseling, and supportenables families to keep relativeswith Alzheimers at home longer:nursing home placement was de-layed by an average of 18 months,resulting in substantial cost sav-ings.3 That program, developedand tested in New York City, hasbeen replicated in several states.Despite physicians concern thatrecording a diagnosis of Alzhei-mers disease might jeopardize apatients future health insurancecoverage, experts say that earlierdiagnosis often makes it easierfor families to arrange for cov-erage and plan for future healthcare costs. (An exception is long-term care insurance, which gener-ally cannot be purchased by per-sons with any serious chroniccondition.)

As a geriatrician responsiblefor patients in seven nursinghomes, George Schoephoerster ofCentraCare in St. Cloud, Minne-sota, frequently meets with therelatives of patients with ad-vanced Alzheimers who donthave an advance directive, to learnabout each patients life and val-ues. He asks whether relatives

recall any conversation in whichthe patient voiced preferencesabout end-of-life care. One ofmy goals is . . . to try to helpprimary care doctors do thisbetter, he says, including help-ing them to link newly diag-

nosed patients with support ser-vices and to initiate discussionsabout future medical treatmentbefore dementia is far advanced.

People over 65 with dementiahave three times as many hospi-tal stays as others their age andmuch higher health care costs(see table).4Besides contributingto hospital admissions for syn-cope, falls, and infections, Alz-heimers is associated with worse

management of other chronicmedical conditions, which leadsto preventable hospitalizations (seebar graph).5Such outcomes prob-ably reflect patients inability tocomply with instructions or tocoordinate their own care, poorcommunication between cliniciansand caregivers, and the complex-ity of managing dementia alongwith other disorders. Alzheimersis a chronic disease, and [yet] . . .we use acute care strategies, saidMcCarten. Hospitalization is thelast thing you want to do forsomeone whos demented. I thinkit reflects a failure to manage thisdisease in an outpatient setting.

McCarten has tested a differ-ent approach at seven VeteransAffairs primary care clinics: active-ly screening veterans 70 years ofage or older for cognitive impair-

ment and using teams led by anadvanced-practice nurse to evalu-ate and coordinate care for thosefound to have dementia. BetweenOctober 2007 and December 2009,more than 8000 veterans werescreened using the Mini-Cog, atest involving recalling three wordsafter drawing a clock. Of theveterans offered testing, 97%


Average Per-Person Payments, from All Sources, for Health Care Services Provided to Medicare

Beneficiaries 65 Years of Age or Older with or without Alzheimers Disease or Other Dementia.*

Health Care Services Beneficiaries with Alzheimers

Disease or Other DementiaBeneficiaries without Alzheimers

Disease or Other Dementia

$ $

Hospital 9,768 3,503

Medical provider 5,551 3,948

Skilled-nursing facility 3,862 424

Home health care 1,601 359

Prescription medications 3,198 2,203

* Data are from the Alzheimers Association,4are based on the 2004 Medicare Beneficiary Survey,and are in 2010 dollars. Medical providers include physicians, other medical providers, labora-tory services, and medical equipment and supplies. Information on payments for prescriptiondrugs is available only for people who were living in the community, not those in a nursinghome or assisted-living facility.




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agreed, and about 26% of thosetested scored low enough to beoffered further evaluation. But72% of those patients declinedthat offer, generally saying theywerent interested, disagreed withthe screening result, or didnthave time. McCarten reported thatof 580 patients who agreed to acomprehensive evaluation, 95%were diagnosed with cognitiveimpairment, including 77% whohad dementia. In addition, morethan 100 people who had passedthe initial screening test request-ed further evaluation anyway.And they were mostly right, headded. Most of them had de-mentia. McCarten and colleagues

are conducting a cost analysis todetermine whether case manage-ment for veterans diagnosed withdementia helped to reduce thecost of their care.

It would be so much easierto sell the merits of early diag-nosis of Alzheimers if we hadthe therapies to slow or stop the

diseases progression, commentedMayos Petersen. But even thesearch for therapies will probablyrequire a shift toward earlier diag-nosis. Experts believe that effec-tive treatments are more likely tobe found if drugs can be testedin people with very early Alzhei-mers who have only mild cogni-tive impairment and, eventually,in those with preclinical diseasediagnosed by means of biomark-ers. Florbetapir (Eli Lilly), devel-oped for use with positron-emission tomographic scans ofthe brain to detect beta amyloidplaque deposits (a hallmark ofAlzheimers), may soon be ap-proved by the Food and Drug

Administration, and other simi-lar products are being tested. Re-searchers in the Dominantly In-herited Alzheimer Network areusing clinical testing, scans, andbiomarkers to study people witha genetic mutation that causesearly-onset Alzheimers, and plansare under way to test drugs in this

population, aiming to find onethat could prevent Alzheimers.

Such a discovery, even if itcomes, will probably arrive too latefor Baby Boomers. But healthcare professionals can do muchto improve the lives of people

with Alzheimers, said MichelleBarclay, a psychologist and vicepresident of program services atthe Alzheimers Association ofMinnesotaNorth Dakota. By thetime someone is diagnosed, ninetimes out of ten theyre alreadyexperiencing relationship prob-lems. They know somethingswrong, but they think nothingcan be done, and thats just nottrue, she said. Alzheimers is a

terminal illness, and its a diffi-cult one. But you can certainlyminimize some of the more cha-otic, tragic things that can hap-pen, if you understand the diseaseand know what to do.

Disclosure forms provided by the authorare available with the full text of this arti-cle at NEJM.org.

Dr. Okie is a medical journalist and a clini-cal assistant professor of family medicine atGeorgetown University School of Medicine,

Washington, DC.

1. Alzheimers Association. Changing thetrajectory of Alzheimers disease: a nationalimperative. May 2010. (http://www.alz.org/alzheimers_disease_trajectory.asp.)2. Idem. New diagnostic criteria and guide-lines for Alzheimers disease. (http://www.alz.org/research/diagnostic%5Fcriteria/.)3. Mittelman MS, Haley WE, Clay OJ, RothDL. Improving caregiver well-being delaysnursing home placement of patients with Alz-heimer disease. Neurology 2006;67:1592-9.4. Alzheimers Association, Bynum J. Char-acteristics, costs and health service use ofMedicare beneficiaries with a dementia diag-nosis. Report 1. Medicare current benefi-ciary survey. Lebanon, NH: Dartmouth Insti-tute for Health Policy and Clinical Care,

January 2009.5. Idem. Characteristics, costs and healthservice use for Medicare benef iciaries with adementia diagnosis. Report 2. National 20%sample Medicare fee-for-service beneficia-ries. Lebanon, NH: Dartmouth Institute forHealth Policy and Clinical Care, January 2009.Copyright 2011 Massachusetts Medical Society.


With other conditionplus Alzheimers orother dementia

With other conditionbut no Alzheimers orother dementia

1000

400

500

100

600

200

300

0

700

800

900

HospitalStaysper10

00Medicare

Beneficiaries65

YrOld

Coronary HeartDisease

Diabetes Congestive HeartFailure

Cancer

946

668

902

550

976

822791

490

Hospital Stays per 1000 Medicare Beneficiaries 65 Years of Age or Olderwith Selected Medical Conditions and with or without Alzheimers Disease

or Other Dementias, 2006.

Data are from the Alzheimers Association.5




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