Tuesday, August 10, 2010

Why Alzheimer's isn't the end of the world

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Alzheimer's is one of the diseases we most dread.

But American expert John Zeisel, says there's a better – more positive – way to view it
Susanna Rustin The Guardian,
Shakespeare, says Alzheimer's expert John Zeisel, could not have been more wrong. In the famous seven ages of man speech in As You Like It he described old age as "second childishness and mere oblivion", when old people, even those in the advanced stages of dementia, are not like children at all. "They have lived through several historical eras," Zeisel writes in his new book, I'm Still Here. "They have seen technology develop, and political upheaval. Most have children and grandchildren."

Zeisel wants to change the way we view dementia, both within our families and society as a whole. He believes the media, egged on by pharmaceutical companies and fundraisers, have built up an appallingly negative view of Alzheimer's to the point where it is the illness we dread above all else. In the UK, the debate recently received a rocket boost when novelists Martin Amis and Terry Pratchett both jumped in: Pratchett, who has been diagnosed with early onset Alzheimer's, argued in favour of euthanasia tribunals, while Amis suggested booths on street corners to enable a "population of demented very old people" to go quietly.

Zeisel insists the debate on assisted dying should remain separate from discussions of Alzheimer's care but his central argument, that dementia is not nearly so bad as we think, is highly relevant. "When they show someone with dementia," he says, "it's someone in the last year or two of the illness, not someone in the first 10 years. The message we get is, this is the worst possible thing that can happen to a person. This is a disease where you lose your memory, your family, yourself."

A sociologist by training, who now runs seven care homes in America and a foundation promoting access to the arts for people with dementia, Zeisel argues that an Alzheimer's diagnosis should be regarded not as a sentence but as a gift. "There are lots of cases where people have much better relationships with their parents after they got dementia," he says. "There was one woman whose mother was a very famous jazz drummer – she was always travelling all over the world – and the daughter said when she was a child she was furious. She now says she has a wonderful relationship with her mother, and all the pain of her childhood is being healed."

While cognitive skills diminish as the brain deteriorates, the possibility of emotional growth remains in the amygdala, the brain's emotional hub. For example, a woman with Alzheimer's whose frontal lobe is damaged will have difficulty with complex sequences and might put on her bra outside her clothes, "but that same woman when she sees someone in trouble, she will go and take their hand and say, 'What's wrong?'"

Much of what Zeisel says could be regarded as not beyond what a sensitive person might work out for themselves. Clearly, introducing yourself when greeting a person with Alzheimer's seems a brilliantly obvious tip: "Sit down next to her, hold her hand, look her in the eye and say, 'Hi, Mom, I'm your daughter Miriam, and I love talking to you about Oakland, where you were born.'"

We must train ourselves not to set tests ("Do you know who I am?"), which may upset those we care about, and instead offer as many cues and clues as we can. When we visit someone who has lost the knack of conversation, we can prepare ourselves to deliver a monologue by writing a list. We must learn to tell people with Alzheimer's that we love them.

It is for kind advice like this that Zeisel has won accolades from readers including John Bayley, whose wife, the writer Iris Murdoch, died of Alzheimer's in 1999 and whose celebrated memoir was made into a successful film credited with raising public awareness.

In Britain, 800,000 people have dementia and the number is likely to rise, so Zeisel is surely right that we must find better ways of being with them. But when he cheerfully offers up a radically altered mother/father/partner with Alzheimer's as "a new person whom you can embrace and enjoy", isn't he being too upbeat?

After his book came out in the US, a friend with dementia in her family told him he had not said enough about grief, and he tackles the point in a journal article he sent me after we talked. What it can't explain satisfactorily is timing: with a degenerative disease such as Alzheimer's, how do we know when it is time to give up the old ways of relating to our loved ones? Is mourning forbidden until they are dead?

He agrees that his recommendations are not for everyone. "Not everybody is up to the hard emotional work it takes to stay connected to somebody. Some people say 'I can't do this.' Some people didn't like their parents much in the first place."

Though not a Buddhist, Zeisel's self-help draws on meditation and mindfulness techniques focused on the present moment, which is where he believes the person with Alzheimer's really is. But he thinks the idea that Asian societies look after their old people better than we do in the west is a myth. "I've not seen any society that deals with dementia well," he says.

When he was growing up in Manhattan, Zeisel was used to the presence of his German-speaking grandfather, who was what was then described as senile, and later came to see this as a formative experience. "It gave me the deep knowledge that even if you couldn't speak someone's language, you could still have a profound relationship," he says. "The openness I had as a child, to people and who they were, because I didn't know any better, is an openness I am gaining again thanks to my contact with people with dementia."

Alzheimer's is one of the diseases we most dread.

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