An Embuggerance

An illustration of Terry Pratchett in his trademark large black hat, with characters from his Discworld novels sitting on his shoulders/hat: a Wee Free Man, a large rat, a swampdragonAuthor Terry Pratchett has revealed that he has been diagnosed with a rare form of early onset Alzheimer’s disease.

I can only imagine how distressing it must be for someone who has spent his life as a wordsmith to start feeling gaps in that remarkable language engine.

I’ve seen several elderly relatives progress along the dementia path, some with Alzheimer’s and some with other causes. It’s a terribly distressing disorder in the early stages, when the person is very aware of the gaps in their memory. Sometimes the later stages are easier to deal with, as although the person we knew has been transformed by the disease and we mourn the loss to ourselves, at least they themselves are often no longer distressed by their condition.

This is largely the situation for US Supreme Court Justice Sandra Day O’Connor, whose husband, aged 77, has now found a new partner in his nursing home and no longer appears to remember O’Connor, although she visits him regularly. O’Connor has decided that she would rather see him happy with his new relationship than disrupt the comfort he finds in it amongst the confusion of his dementia, and wishes them both well.

Experts in Alzheimer’s disease say many people are surprised to learn that patients continue to have rich emotional lives.

“People still have their personhood at the core of who they are,” said Dr. Peter Reed, senior director of programs at the Alzheimer’s Association. “So the effects [of the disease] do not diminish the individual’s need for social interaction, it doesn’t diminish their need for dignity and meaning in their life.”

Alzheimer’s typically causes an individual to forget all but those they see near them regularly, he added. “So, people learn familiarity with the people around them,” Reed said, and with that, “they become more comfortable.”

The persistence of emotional needs after declines in memory makes some sense on a neurological level, another expert said.

“The Alzheimer’s pathology starts in the memory and learning areas of the brain and then spreads,” said Dr. Gary Kennedy, director of geriatric psychiatry at the Montefiore Medical Center in New York City. “The direction and extent of the spread varies tremendously from one person to the next. For some, their thinking and memory are largely gone, but their emotional expressiveness may be relatively intact.”

As the disease progresses, many Alzheimer’s patients become disinhibited emotionally and sexually, which adult children often tend to find more distressing than spouses do. Many nursing homes deal with this as if it is a misbehaviour, sadly, and medicate the patients simply to make life easier for themselves. This leads often to adverse pharmaceutical reactions to antipsychotic medications, for example, which may make the person more aggressive rather than quieter, which can then lead to a distressing and escalating cycle of aggression and medication. Sometimes people who just needed to be supported in their emotional expression end up overmedicated and then discharged from nursing homes back to a family which already knows that they cannot handle the extra care alone.

A lot of this distress that people with Alzheimer’s and their families are subject to could be alleviated if the disease was generally understood better, and if the work of carers outside nursing homes for their loved ones with the disease were better supported. The festive season is often an especially difficult time. If you know someone caring for an Alzheimer’s affected person, think if there is something helpful you could do (a home-cooked meal or two for the freezer, perhaps? offer to give them some respite time for a few hours while they go and do something just for themselves? or so that they can just get the Xmas shopping done?). Carers for people with other disorders could do with some relief as well, of course. Any of our commentors who are carers, please chime in with something that you would find helpful at this time of the year especially.

crossposted from LP in Exile

Categories: health, language, relationships

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