Alzheimer's Disease - A Statistical Time Bomb

by Jack D. Gordon

It seems like each day brings more bad news about Medicare. Critics, supporters and neutral commentators focus on such aspects as the prescription drug benefit and the effects of budget surplus and deficit on the program's future soundness.

Political partisans across the spectrum can argue any side they want. The one overriding and immutable fact is the relentless pressure of an aging society. By 2030, there will be twice as many people over the age of 65 as there are today-more than 71 million of us, according to the U.S. Census Bureau.

Exacerbating this time bomb is another unsettling prospect. As the over-65 population increases, so does the number of people with Alzheimer's disease. At present, an estimated 4 million Americans have Alzheimer's. One in ten individuals over 65 and nearly half of those over 85 are affected. Unless a cure or preventive measure is found, the number of Alzheimer's patients is likely to more than triple by 2050, according to the Alzheimer's Association.

Alzheimer's disease has a long time trajectory, with death coming eight, ten, or even 20 years after diagnosis. Long before the end, Alzheimer's patients lose their ability to communicate with others and to understand what is going on around them.

The burdens of care fall upon spouses and other family members. With Alzheimer's disease, family caregivers put their lives on hold for years. This is because our so-called health system has little or no provision for the care of Alzheimer's patients.

This central fact about Alzheimer's disease raises a serious public policy question. Do we have any right to ask that the entire burden be placed on family members?

In my view, the answer to that question is no. It seems to me unethical. We have a health care system that pays doctors and hospitals to care for patients, but assumes that family and friends will do this work without pay, for as long as necessary, and under the most difficult and stressful conditions imaginable.

This "free" care may save money for our health care system. It does not take into account the direct financial costs to family caregivers, such as lost income, or the costs associated with health problems brought on or exacerbated by the stresses of caregiving.

Studies show that family caregivers of dementia patients have higher rates of depression than caregivers of patients with other terminal illnesses. Research confirms what we have strongly suspected: caregiving is so stressful for family members caring for dementia patients, so emotionally draining and difficult, that it leads to poor health and perhaps even to premature death.

These burdens could be eased through the expansion of hospice. The Medicare hospice benefit is essentially a system of support for home care. At present, Medicare requires a physician's prognosis that the patient has fewer than six months to live. This is an arbitrary time span set by Congress to limit hospice funding; there is no medical reason for it. In order to make hospice care more widely available to Alzheimer's patients, and to those suffering from other fatal but lingering illnesses, the law should be changed to extend care for the duration of the illness.

A hospice environment can be a partial solution to caring for chronically and terminally ill people. It certainly makes life easier for caregivers. Hospice is required by Medicare to provide bereavement counseling to families of the deceased for a year after death. This acknowledges the mental health needs of the survivors. Hospice always considers the individual and his or her family as the "patient." In many cases, certainly in Alzheimer's disease, bereavement starts with the diagnosis. Families need help and support from that point forward.

Alzheimer's is a real test of the humanity of the system. Help for these patients and their families is now pushed into the background by a system that makes ability-to-pay the first consideration in providing care. Hospice can make care for Alzheimer's patients and their families more humane and responsive to people's needs.

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Jack D. Gordon was a former CEO of Hospice Foundation of America. HFA explored these issues in its 2004 Annual National Bereavement Teleconference, Living With Grief: Alzheimer' Disease.

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