Map of life expectancy at birth from Global Education Project.

Tuesday, July 05, 2005

The human condition

This week, during the G8 summit, attention is focused on Africa, where 1/6 of children die before the age of 5. I expect to go there myself a bit later -- I recommend this week's British Medical Journal (actually I recommend it every week) which focuses attention on some issues we don't always think about regarding Africa, including the "brain drain" of medical professionals from the continent, and the political and cultural progress that Africans themselves are making to address their grave problems.

But now I'm going to talk about us rich folks. The 20th Century produced a revolution that we take for granted, and scarcely think about. It just seems natural to us, here in the wealthy north end of the planet, that the life we can expect is long -- at least 75 years. The constitution of the World Health Organization enshrines a principle: "The attainment of the highest possible level of health is the right of all people." Health is defined in as "a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity." In most of the world, the assertion of such a right would seem delusional, yet Americans seem to view it as not just an ideal, but a real, current entitlement.

A lot of us entitled Americans now do get pretty lucky, and live into what used to be advanced old age with not much worse than some aches and pains and a tendency to forget where we left our glasses, but just as many of us do not. The really bitter pill is that nearly half of people over age 85 have dementia. Right now there are something like 5 million Americans with dementia, including 60 to 80% of nursing home residents. If it doesn't get you, it will get your spouse, a parent (or two), a sibling, a friend (or two or six). And that can be nearly as hard.

Dementia -- Alzheimer's disease, vascular dementia, or other forms, which are usually difficult to distinguish from each other -- not only means that people gradually lose self-care skills and the ability to live independently. It produces personality changes, disturbances in interpersonal interactions, and can be a tremendous emotional burden on caregivers and other relatives and family friends. There is the enormous cost to society of caring for people with dementia. It's the most important reason why elderly people need long-term care, and therefore it's a big part of the Medicaid funding problems which are preoccupying the governors and causing a significant crisis in state-federal relations. As the proportion of elderly people in society continues to increase, so will the proportion of people with severe dementia, because we still have absolutely no effective methods of preventing or treating Alzheimer's Disease. We will have to create a much larger infrastructure of home care services, adult day cares, and long-term care facilities, and we will have to pay the costs of operating them.

Culturally, we will have to adjust to the financial, physical and emotional challenges created by an increasing prevalence of dementia. Many couples who have spent many years together, perhaps their entire adult lives, who have done the hard work of building relationships, making the adjustments and compromises, learning the habits, rules and routines of a shared life, will find it all unravelling. Hopes for companionship in late life can be demolished by paranoia, loss of social skills, obliviousness to the distress of others, displaced anger and frustration, and ultimately the dissolution of personality. The ethical conundrums concerning what treatment to provide in late stage dementia are overpowering.

I am sorry to paint such a grim picture. Of course people are often resilient and resourceful, and can manage such challenges, both individually and collectively. The slow decline of Alzheimer's Disease and similar conditions is almost unbearable to watch, but just almost. We can bear an awful lot, and even find meaning and reward in doing the best we can for someone who is both needy and difficult. Even if the person with dementia can't be grateful, others can. But as a society, we won't meet this challenge if we don't acknowledge it.

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