Civil rights for Alzheimer’s patients

February 10, 2008 by  
Filed under ALZHEIMER'S

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Do Alzheimer’s patients have civil rights? Of course, they do. But what are they? How do they get them? In the area of civil rights, they are under a double or triple cloud. Last month the Alzheimer’s Society in the UK issued a new report about abuses of Alzheimer’s patients.

Why do Alzheimer’s patients have trouble getting their civil rights? First, they are vulnerable and powerless. You can’t stage a protest march when you’re in a wheelchair and need someone to push it. You can’t organize a boycott when you no longer pay your own bills. You can’t give impassioned speeches if you can’t organize your thoughts. And a disproportionate number of people with dementia are African American or Hispanic, since those groups have a disproportionate amount of stroke, high blood pressure, and diabetes.

Second, nobody really wants to give full rights to mentally handicapped people. My grandmother was never declared mentally incompetent, and I was never declared her legal guardian, but I had no trouble signing for her or getting access to her personal information from people who were supposed to be protecting it. Why? How? Because I told them that she had Alzheimer’s and that was all they needed to know. That was fine for me and her, because she wanted me to handle her affairs, and I would never take advantage of her. But in a system where nobody questioned her DNR (Do Not Resuscitate) wristband, it was not safe to grant full rights over her to a disinterested professional because they insisted they wanted what’s best for her. She lived happily for two more years after that incident – she was not exactly on her last breath.

Third, we don’t really know how to give civil rights to Alzheimer’s patients. If someone can’t communicate their wishes, it’s difficult to follow their wishes. If someone gets violently frustrated when she has to make a decision, to give her too many decisions is not compassionate. Mental disabilities are a difficult legal challenge.

But that doesn’t mean we shouldn’t try to preserve the human rights of Alzheimer’s patients. Health Professions Press is one group who has published an Alzheimer’s Bill of Rights. The issues are not all that different from those faced by other groups in our society. People are prejudiced against them, and feel justified in doing so. When they can still work, they have trouble getting work. When work becomes difficult, they have trouble receiving the accommodations they need to keep working.

In the United States and elsewhere, of course, this is all illegal. The Americans with Disabilities Act prohibits discrimination on the basis of a disease. And I’m sure that some employers don’t discriminate. If some workers with Alzheimer’s disease must have all their instructions in writing because they forget easily, some employers provide all their instructions in writing.

But I’m not naive enough to believe that happens all the time. I heard about an 87-year-old retired cleaning lady who was denied coverage for home health care because she couldn’t provide copies of her rent checks as evidence. Except that, because of Alzheimer’s disease, she could no longer write checks. No, discriminating against a certain class of people is common and easy – people with terminal diseases, which Alzheimer’s is. Because, eventually, these people won’t be able to protest their treatment.

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