March 27, 2008

Do No Harm: New Data on Dementia

At 43 pages, the newly released report from the Alzheimer’s Association, “Alzheimer’s Disease Facts and Figures.” is 50% longer than last year’s report and every bit as alarming ( Today, 5.2 million Americans have Alzheimer’s disease. By 2050, between 11 million and 16 million people will be afflicted unless medical science finds a way to prevent or treat this progressive, ultimately fatal brain disease.

To its credit, the report shies away from hyperbole. Under the heading of treatment and prevention, the authors state unequivocally: “No treatment is available to delay or stop the deterioration of brain cells in Alzheimer’s disease.” They add that while the FDA has approved five drugs for the treatment of Alzheimer’s, these drugs “temporarily slow worsening symptoms for about six to 12 months, on average, for about half of the individuals who take them,” hardly a ringing endorsement for pharmacologic treatment.

Recognizing that one of the major challenges in providing for individuals with dementia is who will take care of them, the report features a major section on family caregiving. Close to 10 million family members, friends, and neighbors provide unpaid care for a person with dementia in the U.S. today. All told, they contribute an estimated 8.4 billion hours of care per year. The impact on the caregivers’ emotional well-being, health, employment, and financial security is considerable. The need for caregivers—paid and unpaid, family and professional—is reaching crisis proportions. The report only hints at the magnitude of the problem (see the President’s Council on Bioethics, Taking Care: Ethical Caregiving in Our Aging Society, 2005,

But the most striking statistics in this number-laden report are those relating to hospitalization rates—and costs—for individuals with dementia. Medicare beneficiaries over age 65 with dementia are 3.4 times more likely to be hospitalized each year than are their non-demented counterparts. Looked at differently, this means that 25% of older patients in American hospitals at any point in time have dementia. Not surprisingly, annual Medicare costs for those with dementia are high: $13,207 per person compared to $4,454 per non-demented person. This discrepancy is directly attributable to the disproportionately high rate of hospitalization. But not only are people with dementia at high risk of hospitalization, once they’re in the hospital, they cost Medicare 3.2 times more than other patients: they have more complex diseases, undergo more procedures, and stay in the hospital longer.

The data on hospitalization rates are extraordinary because it is far from clear that it makes sense to subject individuals with dementia to frequent and lengthy hospitalizations. The more advanced their dementia, the more frightening the experience of being in a strange place, cared for by a new and unfamiliar nurse every eight hours—and the less they have to gain. In one study of survival after hospitalization, for example, 55% of patients with dementia and a hip fracture were dead in six months, compared to 12% without dementia treated for a hip fracture, and 53% of patients with dementia and pneumonia were dead in six months, compared to 13% of those without dementia treated for pneumonia (RS Morrison, A Siu, “Survival in End-Stage Dementia Following Acute Illness,” Journal of the American Medical Association 2000; 284: 47-52). These uncomprehending patients who are near the end of their lives endure intravenous injections, nasogastric tubes and other uncomfortable and scary procedures in exchange for a small chance of living ever so slightly longer in their demented state (S Mitchell, D Kiely, and MB Hamel, “Dying with Advanced Dementia in the Nursing Home,” Archives of Internal Medicine 2004; 164:321-6). Surely the burdens of invasive treatment outweigh the benefits. A palliative approach to care, focusing on comfort rather than a misguided attempt to increase longevity, makes sense.

The report concludes by noting that the lifetime risk of developing dementia is 21% for women and 14% for men, assuming they live to be at least 55. A low fat diet, rich in fruits and vegetables, may attenuate these stark numbers slightly, as may a vigorous social network. Research into drugs and vaccines to delay the onset of dementia or treat the disease once it develops is thriving and may yet produce a magic bullet that dramatically alters the odds of dying of dementia. But in the mean time, we need to overhaul the prevailing approach to the care of individuals who have this devastating disease. It’s one of the few areas of medicine in which doing the right thing actually has the potential to save money.