The

NEW ENGLA ND JOURNAL

of

MEDICINE

Perspective
september 22, 2011

Confronting Alzheimers Disease

Susan Okie, M.D.

t the age of 69, a year after retiring from his practice as a Minneapolis trial lawyer, Mike Donohue noticed his driving skills deteriorating. His wife persuaded him to undergo a simulated
driving examination. I flunked it miserably, he recalled. Donohue consulted his physician, underwent tests, and learned that he had early Alzheimers disease. His doctor told him, Take this medication, call me in a year, and call the Alzheimers Association. Devastated, Donohue called that organizations local office. By volunteering there, he met other people with early-stage disease, helped to launch some programs for them, and now, 5 years later, serves on an advisory committee about services for people with newly diagnosed Alzheimers and their families. Recently, he and several friends with the condition entered a new program where theyll serve as mentors for others with a new Alzheimers diagnosis. Theres a great loneliness out there, Donohue said. It comes from the stereotype that were all drooling in a corner, even though most people living with the disease are in community settings rather than nursing homes. My cognition remains good, and until recently my memory remained reasonably good. These friendships are so important to me. As we prepare for an explosion in the number of Americans with Alzheimers disease (see line graph),1 efforts to achieve earlier and better diagnosis of dementia have become key components of many of the roughly two dozen state plans for confronting the

epidemic, including Minnesotas. Such a recommendation also seems likely to figure into the national strategic plan for addressing Alzheimers, whose formulation was mandated by a law passed in January. Current recommendations by the federal government and private groups discourage doctors from actively searching for early dementia by using brief screening tests for cognitive impairment, although the National Institute on Aging (NIA) has stated that early diagnosis of Alzheimers is beneficial. The U.S. Preventive Services Task Force says there is insufficient evidence to recommend routine dementia screening in older adults, stating instead that physicians should assess cognitive function whenever cognitive impairment or deterioration is suspected. Guidelines may change if ongoing studies show that cognitive screening, by identifying
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Confronting Alzheimers Disease

14.0 13.0 12.0 12.7 11.2 9.5 7.8 6.5 5.1 5.3 5.6

13.5

11.0 10.0 9.0 8.0 7.0 6.0 5.0 4.0 3.0 2.0 1.0 0.0

2010

2015

2020

2025

2030

2035

2040

2045

2050

Projected Number of Americans 65 Years of Age or Older with Alzheimers Disease. Data are from the Alzheimers Association.1

dementia earlier, may lead to improved care of both dementia and other chronic conditions in affected patients, potentially reducing health care costs. In April, the NIA and the Alzheimers Association published new diagnostic criteria expanding the definition of Alzheimers to include some cases of mild impairment of memory, reasoning, or visual perception.2 Under health care reform, providers may now bill Medicare for assessment of cognitive function in older adults, through direct observation and reports from patients, family members, and others, as part of annual wellness visits. An expert committee is evaluating the relative merits of various screening tests at the request of the Centers for Medicare and Medicaid Services. An estimated 5.4 million Americans 65 years of age or older have Alzheimers disease, the commonest cause of dementia and the sixth-leading cause
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of death in the United States. The number is projected to rise to 7.7 million by 2030, as the Baby Boom generation ages, and to between 11 million and 16 million by 2050. Spending this year by the federal Medicare and Medicaid programs for people with Alz hei mers is estimated at $130 billion, according to the Centers for Disease Control and Prevention. Grim predictions for the rising cost of Alzheimers care which may top $1 trillion by 2050 have prompted calls for planning at every level of government and for identifying strategies to reduce costs. About 10 to 11% of people 70 to 89 years of age have dementia, according to neurologist Ronald Petersen, chair of the Advisory Council on Alzheimers Research, Care, and Services (the new panel tasked with developing a national Alzheimers plan) and director of the Mayo Clinic Study on Aging, a prospective populationbased study of cognitive impair-

ment and dementia in elderly residents of Olmsted County, Minnesota. National insurance data show that between 2007 and 2009, 11.1% of Medicare beneficiaries had at least one claim for Alz heimers or another dementia. Another 15% of the Olmsted County residents in the Mayo study have mild cognitive impairment, a less severe condition with numerous possible causes; each year, about 10% of these people go on to develop dementia, Petersen said. Dementia is strikingly underdiagnosed. Studies show that more than half of patients who meet standardized criteria for dementia dont have the diagnosis noted in their medical records so when they get referred or when someone else uses the medical record . . . theres nothing to tell the receiver that this is a person with dementia, said Katie Maslow, an Alzheimers researcher at the Institute of Medicine. Experts say that physicians frequent failure to make or record the diagnosis stems from insufficient education about recognizing early cognitive impairment, as well as from stigma and the fear and hopelessness that dementia evokes in both the public and physicians. Lacking effective treatments to slow dementias progression, some physicians prescribe Alzheimers drugs without mentioning the disease by name, fearing that the news might depress patients or make them suicidal. Families of people with Alzheimers often keep it a secret from friends. Alzheimers is managed in this kind of paternalistic way that used to be common in cancer care, with many physicians believing youre better off not knowing, said J. Riley McCarten, medical director of the Geriatric Research Education and Clinical

Projected No. of Americans 65 Yr Old with Alzheimers Disease (millions)

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Confronting Alzheimers Disease

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 Dementia $ Hospital Medical provider Skilled-nursing facility Home health care Prescription medications 9,768 5,551 3,862 1,601 3,198 Beneficiaries without Alzheimers Disease or Other Dementia $ 3,503 3,948 424 359 2,203

* Data are from the Alzheimers Association,4 are 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 prescription drugs is available only for people who were living in the community, not those in a nursing home or assisted-living facility.

Center at the Minneapolis Veterans Affairs Medical Center. He added that although patients and families are predictably upset to learn the diagnosis, many are also relieved to have an explanation for memory loss, behavioral changes, or other symptoms. Its rare that someone would ever say, I wish you had never done an evaluation, he said. Earlier diagnosis enables patients and families to prepare for coping with the illness, including making time for longdesired trips and reunions and participating in legal and financial planning. People with early Alzheimers are usually still competent to specify their wishes concerning medical treatment and to complete an advance directive, which can make future decisions regarding health care easier and less emotionally charged for physicians and families. Family members, especially the primary caregiver, can be educated about managing symptoms such as memory loss and behavioral changes and can get help addressing safety issues. A randomized clinical trial has shown that pro-

viding primary caregivers with education, counseling, and support enables families to keep relatives with Alzheimers at home longer: nursing home placement was delayed by an average of 18 months, resulting in substantial cost savings.3 That program, developed and tested in New York City, has been replicated in several states. Despite physicians concern that recording a diagnosis of Alzhei mers disease might jeopardize a patients future health insurance coverage, experts say that earlier diagnosis often makes it easier for families to arrange for coverage and plan for future health care costs. (An exception is longterm care insurance, which generally cannot be purchased by persons with any serious chronic condition.) As a geriatrician responsible for patients in seven nursing homes, George Schoephoerster of CentraCare in St. Cloud, Minnesota, frequently meets with the relatives of patients with advanced Alzheimers who dont have an advance directive, to learn about each patients life and values. He asks whether relatives

recall any conversation in which the patient voiced preferences about end-of-life care. One of my goals is . . . to try to help primary care doctors do this better, he says, including helping them to link newly diagnosed patients with support services and to initiate discussions about future medical treatment before dementia is far advanced. People over 65 with dementia have three times as many hospital stays as others their age and much higher health care costs (see table).4 Besides contributing to hospital admissions for syncope, falls, and infections, Alz heimers is associated with worse management of other chronic medical conditions, which leads to preventable hospitalizations (see bar graph).5 Such outcomes probably reflect patients inability to comply with instructions or to coordinate their own care, poor communication between clinicians and caregivers, and the complexity of managing dementia along with other disorders. Alzheimers is a chronic disease, and [yet] . . . we use acute care strategies, said McCarten. Hospitalization is the last thing you want to do for someone whos demented. I think it reflects a failure to manage this disease in an outpatient setting. McCarten has tested a different approach at seven Veterans Affairs primary care clinics: actively screening veterans 70 years of age or older for cognitive impairment and using teams led by an advanced-practice nurse to evaluate and coordinate care for those found to have dementia. Between October 2007 and December 2009, more than 8000 veterans were screened using the Mini-Cog, a test involving recalling three words after drawing a clock. Of the veterans offered testing, 97%
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Confronting Alzheimers Disease

With other condition plus Alzheimers or other dementia 1000

With other condition but no Alzheimers or other dementia

Hospital Stays per 1000 Medicare Beneficiaries 65 Yr Old

900 800 700 600 500 400 300 200 100 0 668 550 946 902

976 822 791

490

Coronary Heart Disease

Diabetes

Congestive Heart Failure

Cancer

Hospital Stays per 1000 Medicare Beneficiaries 65 Years of Age or Older with Selected Medical Conditions and with or without Alzheimers Disease or Other Dementias, 2006. Data are from the Alzheimers Association.5

agreed, and about 26% of those tested scored low enough to be offered further evaluation. But 72% of those patients declined that offer, generally saying they werent interested, disagreed with the screening result, or didnt have time. McCarten reported that of 580 patients who agreed to a comprehensive evaluation, 95% were diagnosed with cognitive impairment, including 77% who had dementia. In addition, more than 100 people who had passed the initial screening test requested further evaluation anyway. And they were mostly right, he added. Most of them had dementia. McCarten and colleagues are conducting a cost analysis to determine whether case management for veterans diagnosed with dementia helped to reduce the cost of their care. It would be so much easier to sell the merits of early diagnosis of Alzheimers if we had the therapies to slow or stop the

diseases progression, commented Mayos Petersen. But even the search for therapies will probably require a shift toward earlier diagnosis. Experts believe that effective treatments are more likely to be found if drugs can be tested in people with very early Alzhei mers who have only mild cognitive impairment and, eventually, in those with preclinical disease diagnosed by means of biomarkers. Florbetapir (Eli Lilly), developed for use with positronemission tomographic scans of the brain to detect beta amyloid plaque deposits (a hallmark of Alzheimers), may soon be approved by the Food and Drug Administration, and other similar products are being tested. Researchers in the Dominantly Inherited Alzheimer Network are using clinical testing, scans, and biomarkers to study people with a genetic mutation that causes early-onset Alzheimers, and plans are under way to test drugs in this

population, aiming to find one that could prevent Alzheimers. Such a discovery, even if it comes, will probably arrive too late for Baby Boomers. But health care professionals can do much to improve the lives of people with Alzhei mers, said Michelle Barclay, a psychologist and vice president of program services at the Alz heimers Association of MinnesotaNorth Dakota. By the time someone is diagnosed, nine times out of ten theyre already experiencing relationship problems. They know somethings wrong, but they think nothing can be done, and thats just not true, she said. Alzheimers is a terminal illness, and its a difficult one. But you can certainly minimize some of the more chaotic, tragic things that can happen, if you understand the disease and know what to do.
Disclosure forms provided by the author are available with the full text of this article at NEJM.org. Dr. Okie is a medical journalist and a clinical assistant professor of family medicine at Georgetown University School of Medicine, Washington, DC. 1. Alzheimers Association. Changing the trajectory of Alzheimers disease: a national imperative. May 2010. (http://www.alz.org/ alzheimers_disease_trajectory.asp.) 2. Idem. New diagnostic criteria and guidelines for Alzheimers disease. (http://www .alz.org/research/diagnostic%5Fcriteria/.) 3. Mittelman MS, Haley WE, Clay OJ, Roth DL. Improving caregiver well-being delays nursing home placement of patients with Alz heimer disease. Neurology 2006;67:1592-9. 4. Alzheimers Association, Bynum J. Characteristics, costs and health service use of Medicare beneficiaries with a dementia diagnosis. Report 1. Medicare current beneficiary survey. Lebanon, NH: Dartmouth Institute for Health Policy and Clinical Care, January 2009. 5. Idem. Characteristics, costs and health service use for Medicare beneficiaries with a dementia diagnosis. Report 2. National 20% sample Medicare fee-for-service beneficiaries. Lebanon, NH: Dartmouth Institute for Health Policy and Clinical Care, January 2009.
Copyright 2011 Massachusetts Medical Society.

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