Facing reality: The cost of Alzheimer dementia—Who will pay?
Janet Jankowiak, MD and
David Knopman, MD
The Baby Boomers are "coming of age." They are living longer,on average, than any generation before. With this increasedlife span comes some real challenges. One is the expected increasein Alzheimer disease (AD) and other dementias (see About dementiapredictions). As people live longer, the chances of developingAD increase markedly. At age 60, less than 0.1% of people havedementia. By age 85, 30 to 40% have the disease. Scientistsare racing against the clock to find a cure or at least a wayto slow the process. In the meantime, the costs for the personwith AD, the family, and society are mounting.
The cost of AD cannot be measured in terms of the emotionalimpact on the victim and his or her family. The fear of losingone’s ability to think clearly is frightening. Many justhope "it won’t happen to me" and click to a "more pleasant"topic. However, this is a reality that our society must faceif we are to avoid putting the United States into bankruptcy.
What exactly are the costs in dollars of having dementia? Inthe current issue of Neurology, Zhu and others discuss thisimportant topic (Zhu CW, Scarmeas N, Torgan R, et al. Longitudinalstudy of the effects of patient characteristics on direct costsin Alzheimer disease. Neurology 2006; 67: 998–1005). Thestudy looked at people with probable AD in the early stages.These people were seen in three different Alzheimer clinics:in New York, Baltimore, and Boston. About 200 people were followedfor 2 to 7 years.
At the start of the study, the 200 people each had a full batteryof tests. These included tests to make the diagnosis of probableAD. Other tests looked at each person’s ability to performactivities of daily living (dressing, bathing, toileting). Caregiversgave their input about behaviors and financial costs of caringfor their loved one. Behavioral problems such as wandering awayfrom home, yelling, or increased confusion at night were recorded.Hallucinations (seeing things or hearing voices that were notthere) or delusions (believing something that was not true,like your son was robbing you) were checked if present. Depressionwas noted if the person’s mood was sad or he or she haddifficulty sleeping or a change in appetite. Because signs ofParkinson disease (PD) may be seen with certain dementias, signsof PD were also noted. These included a trembling or shakingwhen at rest, stiffness of an arm or leg, soft speech, and slowed/stoopedwalking, with a shuffle. Other illnesses such as heart attack,high blood pressure, kidney, lung, or liver disease, heart failure,diabetes, or cancer were recorded.
Progression of AD was measured every 6 months by repeating thefirst battery of tests. Information about costs was collectedevery year. It was also noted where the person was living: athome, in a retirement home, assisted living facility, or nursinghome.
Direct costs of care for each person with AD were broken downinto medical and non-medical care. Medical care included hospitalization,outpatient care, assistive devices (cane, wheelchair, bath stool)and medications. Non-medical care included home health aides,respite care, and adult day care.
At the beginning of the study, 95% were mildly demented. Bythe end of the study, 8% had died. Of the rest, 71% stayed mildlydemented, 19% were moderately demented, and 10% were severelydemented. Initially, 86% lived at home, 8% lived in a nursinghome, and 6% in a retirement home or assisted living facility.Of interest, half the people had no other illness than milddementia at the start of the study. About a third had one otherillness, most often high blood pressure.
Everyone used some type of medical care each year, especiallymedications. The average number of medications increased fromsix at the beginning of the study to eight by the fourth year(a 25% increase). Medication cost rose from $2,870 to $4,300(a 50% increase). Total medical care cost increased by almost50%, from $7,000 to $10,600. On the other hand, non-medicalcare cost increased almost seven times, from $1,350 to $9,350.
Total direct cost of caring for a person with AD was $9,250at the start of the study. By the fourth year, the cost hadmore than doubled, to $20,000 per year. It was noted that smalldeclines in function led to large increases in medical carecosts. In addition, developing one new illness increased thecosts by 14%. Of interest, total direct cost was 21% lower forpatients living at home.
This study clearly shows the dramatic increase in direct costof caring for patients with AD over a relatively short time.The fact that costs are 20% lower by staying at home suggeststhat steps to delay or prevent moving out of home could reducesome costs. However, this potential savings needs to be balancedwith the increase in cost to caregivers giving unpaid care (indirectcosts). A true team effort among health care providers, family,and policy makers is needed to drive action to provide the bestcare for patients with AD without sending the country into bankruptcy.Continued research into ways to prevent or slow the diseaseis equally critical.
There is a lot of talk about the effect of the baby boom generationjoining the ranks of the elderly. The first of the post-wargeneration turned 60 this year. Over the next 50 years theirimpact will be felt in all aspects of care of the elderly. Thecosts of Social Security and Medicare are frequent topics inthe lay press.
Despite being somewhat overweight and almost certainly overindulgentin their 20s and 30s, the baby boom generation will most likelybe the healthiest in American history by the time they reachtheir senior years. The number of years they live past the retirementage of 65 is likely to be even longer than it is now. Today,an American woman who is 65 can expect to live another 19.8years (almost 85 years old). A 65-year-old man can expect tolive another 16.8 years (based on 2003 data). More and morepeople are living past age 75 or 85 years. People living to100 are no longer unusual. Because the old are living longerand the Baby Boomers are entering the elderly group and thereare fewer children as family size shrinks, the population inthe United States is shifting toward the older end. That meansthat while in the year 2000, 12% of the population was overage 65, by 2050, it is projected that 20% of the populationwill be over age 65.
Good general health does not necessarily protect against Alzheimerdisease (AD) and other later life dementias. AD is the mostcommon disease that causes dementia. Early signs are problemsremembering recent things (like what you had for lunch or whocame to visit today) or difficulty finding the word you want.The ability to make decisions, be flexible, and solve a problembecomes more difficult. Family and friends may notice a changein personality or, more often, a worsening of the less favorableparts of a personality (becoming more short-tempered or moreblunt in criticizing others). As the disease progresses, peoplemay get lost on familiar routes, and have more difficulty followinga conversation. Eventually, they even have difficulty caringfor themselves (dressing, bathing, and finally even eating).
Besides AD, there are several other types of dementia. The twomost common ones after AD are dementia due to stroke (calledvascular dementia) and a dementia often seen with PD (calledLewy body dementia; see Patient Page: Knopman D, Jankowiak J.Not all dementia is Alzheimer: dementia with Lewy bodies. Neurology2005;65:E26–E27).
AD, vascular dementia, and Lewy body dementia all become increasinglycommon in late life. Before age 65, AD is uncommon. Among allpeople over age 65 years, it is estimated that about 5% haveAD. However, when the number of people over age 65 is brokendown into 5-year intervals, the number of people with AD doublesin each of these 5-year blocks. For example, among people betweenthe ages of 65 and 69 years old, only about 1 in 100 peoplehave AD. Among individuals 90 years and older, 30 to 40% haveAD. There does not appear to be any decline in the number ofnew cases of AD even in the 10th or 11th decades of life.
The combination of a growing number of older people and thefact that AD becomes more common with advancing age means thatAD and other dementing illnesses are going to be dramaticallymore common over the next 50 years. In 2000, there were around2.5 million patients with AD in the United States (note thatthere is a wide range of estimates ranging from slightly below2 million to over 4 million). By 2050, that number will increasefourfold (Brookmeyer R, Gray S, Kawas C. Projections of Alzheimer’sdisease in the United States and the public health impact ofdelaying disease onset. Am J Public Health 1998;88:1337–1342).
Although there are many (demographic) time-bombs to worry about,the future burden of dementia due to AD has to be high on thelist of the most threatening. With a smaller workforce of youngpeople, who is going to take care of the millions of cognitivelyimpaired elders? Nursing homes will become the prime industryin many regions, but who will pay for the enormous costs?
These are not questions that can be ignored. Nor can decisionsbe made purely on an economic basis by politicians or self interestswho see a chance to make money. Although the issues become veryemotional when one has a family member with dementia, a long-term,carefully crafted plan is needed. This will require a team effort.At the table there must be the health care providers who knowthe course of dementia and how to manage it, practical peoplewho understand the economics of the situation, policy makerswho can enact a plan, and leaders who can bring consensus. Atthe same time, those who care about these issues must continueto push for further funding of research to slow, halt, and eventuallycure AD and its devastating cousins.
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