Wednesday, May 14, 2008

Early Alzheimer's testimony before Senate committee

Susan Levine has an important story on the front page of the May 14 Washington Post, “Man with Alzheimer’s Fights ‘Family Disease’; 5th Generation Patient Copes with Early Onset,” link here. This related testimony before a Senate Special Committee on Aging. The fact that such a committee exists means that some attention must be given now to long term care even though the major political candidates don’t talk a lot about it. The Post story online includes a video of some of the testimony, some of it quite direct from people with Alzheimer's.

The particular family originated in Russia, with some of it migrated to Germany and then the U.S. Studies showed a specific genetic pattern, with a 50% chance of inheritance from each parent, and apparent dominance, meaning that inheriting the gene gives the person early onset Alzheimer’s. The particular individual developed symptoms around 50, but he had been a “default caregiver” for his mother when she was in her 40s. A child of two parents with the gene would have a 75% chance of developing it. This patterns follows the simple inheritance pattern for any inherited "trait" taught in high school biology (and often asked on tests) although more complicated patterns certainly occur. It’s obvious that the existence of a genetic lottery (however rare in general) creates obligations within a family and questions about interdependence and social values within and without a family. Other diseases with similar patterns (Huntington’s Chorea (link)) have been well documented in the media, in Britain as well as in the U.S. Questions have been presented about taking a genetic test early in life and whether to avoid having children. An episode of TheWB's Everwood in 2005 dramatized the agony of deciding to take such a genetic test.

In the 1950s, when I grew up, people would refer to a condition called colloquially “softening of the brain” with some trepidation, for early dementia, but it was thought to be rare, and unpreventable and untreatable.

As Ronald Reagan’s personal history shows (until his passing in 2004), people who develop the disease with aging now live much longer with the disease than they did a generation or two ago. As a result, adult children today often must be prepared to deal with it (and it can come as a shock), whereas a couple decades ago (before life expectancy started accelerating so quickly with medical advances that could prolong life) they would not have even thought about it. Can medications prevent the progress of the disease with age? NIH (the National Institute on Aging) has a paper “Alzheimer’s Disease Medications Fact Sheet” on this here. They may delay progress for mild to moderate Alzheimer’s, but the overall picture does not yet make it look preventable. The Alzheimer’s Association has a diagram of the organic processes involved here.

Dementia sometimes occurs “naturally” with age, and probably is not necessarily just the result of genetics. Heart disease, circulation problems, atherosclerosis, strokes – some of them augmented by diabetes or by behavioral issues like smoking and obesity – may accelerate symptoms and present issues for other family members. Persons used to mental activity may resist any loss of function with age, as demonstrated recently on Barbara Walters ‘s “Live to Be 150”. ABC recently showed a 94 year old woman in New York City who still worked as a financial planner. The question of personality and “locus of control” is potentially important. As an article on a community in Costa Rica showed (two entries back), an “external locus of control” may bode well if other family members are around to provide social feedback; otherwise, an introverted person who is mentally active may be more resistant to changes with age.

Also, today, former Supreme Court Justice Sandra Day O'Connor appeared on ABC "Good Morning America" to discuss Alzheimer's Disease. Here is the link "O'Connor: The Pain of Alzheimer's", here.

Caregivers, as with other eldercare situations, may experience a feeling of loss of personal or individual sovereignty, relative to the values of an individualistic society, and the potential logical consequences of those values (particularly for those who did not form their own families or who did not have caregiving responsibilities early in life for some circumstance). They may have to curtail activities and associations (even employment) that they would choose on their own because of the needs of other family members, needs they cannot prevent from occurring with their own chose actions. The moral issues here are not the same as they way we usually depict "responsibility for one's own acts" as in "deciding" to have children and then being ready to raise them. This is responsibility that exists regardless of one's own choices or acts. Perhaps this explains some of the teachings of the New Testament and some of Rick Warren's ideas for the "Purpose-Driven Life". It's not about you, he writes. Or perhaps another answer is to be better prepared for this eventuality much earlier in life.

Update: May 19

NBC4's Doreen Genzler reported on the 11 PM news tonight (Washington DC) about a generic test (called "Alzheimer's Mirror") for an increased risk for Alzheimer's, from a company called "Smart Genetics," a test for about $300. The link is here. It is not clear yet how much protection consumers would have from insurance companies's getting the information later to prevent anti-selection, and this is obviously a potential issue for Congress in health care reform and in addressing eldercare issues. The NBC4 report presented a family with a 94-year-old with the disease and with a daughter concerned about the high incidence in the family. But the disease may increase naturally with much longer lifespans unless something can be done with medication to stop its progression.

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