A new report released by the Alzheimer’s Association brings some bad news: an estimated 5.1 million Americans currently have Alzheimer’s disease (“Alzheimer’s Disease Facts and Figures 2007,” available at http://www.alz.org/national/documents/Report_2007FactsAndFigures.pdf.) And the problem is likely to get worse. By 2050, the number of people over age 65 with Alzheimer’s will have more than doubled, rising to at least 11 million. In a press release put out by the Alzheimer’s Association, the organization’s president issued a call to action: “We must make the fight against Alzheimer’s a national priority before it’s too late. The absence of effective disease modifying drugs, coupled with an aging population, make Alzheimer’s the health care crisis of the 21st century” (Alzheimer’s Association News Release, 3/20/07, available at www.alz.org/media_7362.asp). He’s right: we need to turn our attention to this devastating disease, both by looking for treatments and by finding better ways to care for afflicted individuals. But there’s something else we can do now which would improve the quality of life for those with Alzheimer’s—and simultaneously decrease the cost of their care. The media’s response to the Alzheimer’s Association report is to clamor for more research—which is a fine idea as far as it goes, but it fails to acknowledge that no progressive neurologic disease has yet been cured, not Parkinson’s disease, not stroke, not multiple sclerosis. What we can do today is to provide more hospice care and less intensive hospital care to people with Alzheimer’s disease.
The report presents a striking graph showing that the average amount spent by Medicare on people with dementia (both Alzheimer’s disease and other types) was almost three times what Medicare spent on other patients: $13,207/year compared to $4,454/year. A small fraction of the total is spent on home health aides, but an enormous proportion is spent on hospital care and on nursing home care: the cost of hospital care for the patient with dementia is 3.2 times higher for a patient with dementia than for other Medicare patients ($7,074/person compared to $2,204/person) and the cost of skilled nursing home care is more than ten times higher for a patient with dementia ($2,144/person compared to $210/person), where skilled nursing home care translates into care in a subacute or rehab unit after hospitalization. Medicare pays only for this kind of “skilled nursing facility,” not for custodial long-term care.
By contrast, only a very small percentage of people who die of advanced dementia receive hospice care. One recent study found that a mere 5.7% of nursing home residents and 10.7% of people with dementia living at home were referred to hospice even when they were dying of their dementia (SL Mitchell, JN Morris, PS Park and BE Fries, “Terminal Care for Persons with Advanced Dementia in the Nursing Home and Home Care Settings,” Journal of Palliative Medicine (2004); 7:808-16.
Taken together, these observations about the medical care we give people with dementia paint a disturbing picture. Instead of proving comfort care to people who are at the end of their lives, who no longer can get dressed or go to the bathroom by themselves, and who can no longer carry on a conversation, we are sending them to the hospital and subjecting them to invasive and costly tests and treatments that they cannot understand. If they survive the hospitalization, we send them to a rehabilitation facility because they are often too debilitated after their acute hospital stay to return to the same nursing home or home environment from which they came.
Most older people, when asked, say that if they developed Alzheimer’s disease they would not want invasive and painful medical care intended to prolong their lives, treatment that would simply allow them to develop even more advanced dementia. But once they lose the ability to make decisions for themselves, we routinely subject them to precisely the kind of medical treatment that most of them would not want.
We can do something about this travesty today. We can talk to healthy older people about their preferences for care and document their wishes in an advance directive. It’s not unreasonable to ask patients, well before they show any signs of cognitive impairment, to think about the general approach to medical care they would favor if they turn out to be among the 42% of people over 85 who will develop dementia. We can also establish standards for what constitutes appropriate care for people with dementia, standards that would determine just what physicians recommend to patients and families. Searching for a cure is a noble undertaking and we should pursue it wholeheartedly, but as long as millions of Americans continue to contract Alzheimer’s disease, we have a responsibility to provide humane and appropriate medical care for all who suffer from this tragic condition.
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