Memories of Minnie
A lady with Alzheimer's

Searching for the person behind the dementia: condensed from a speech delivered by the then President Barb Angell at the opening of an annual conference of the Alzheimer's Association of Australia.

Minnie at 79This is a person with severe dementia. "Person" is the key word... this is a person with dementia, and the Alzheimer's Association's mission is to improve the quality of life for people with dementia and their carers...

Relating to the person before the disease:
At last year's Alzheimer's National Conference in Sydney I attended a session where I heard a professional ask a question preceded by the words: "There was this multi-infarct talking to a Picks disease..." A multi-infarct? A Picks disease? This "professional" had forgotten that she was referring to two people... two people who happened to have dementia... and I am going to make an appeal to all of you now: during the next few days while you consider the theme of this conference "Practical solutions in dementia care" never lose sight of the person with dementia. "Practical" solutions are all well and good - but don't forget that you are dealing with people. Professional care in residential facilities, and within the community, can never find practical solutions as long as we relate to the disease instead of the person. That person is a human being with a complete background, a lifetime of history.

So, we come back to our person with dementia. I happen to know her history very well. She enjoyed theatre and concerts, she collected fine porcelain and appreciated antique furniture. She was an expert dress designer and dressmaker. I knew her very well. She was my mother. Don't lose sight of the person behind the dementia. That person is still there. Maybe they're hiding behind a door which closes a little further each day; but until that door finally shuts tight at the moment of death a narrow path to communication always remains open.

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The Carer's expertise:
Tap into the expertise of the Carer. The Carer knows the person with dementia better than anyone else. My father was the principal carer of my mother and he looked after her at home until she died - at huge cost to his own health. Sometimes Mum referred to him as "that man". We came to recognize this as an indication that she was distressed by him for some reason, and we'd try to find out why. If she called him "my brother" it meant that she was happy, and we knew this because she adored both of her brothers - as, indeed, she adored Dad. They were as happily married as any two people can be for more than fifty years. Likewise she sometimes referred to me as either "that woman" or "my friend". "That woman" gave us some amusement, because I was staying in the granny apartment at the back of the house and Mum couldn't equate the "friend" she saw inside the house with "that woman" living in the apartment - and she was quite convinced that Dad was keeping a fancy woman.

A catastrophic reaction:
We, as a family, had the extra information that helped us to interpret many of Mum's reactions. Not all of them, obviously. There was one story which Mum constantly tried to tell me and I couldn't make sense of it. She'd point to her wrists and grimace and talk about a "big place" which she associated with something unpleasant. At the time my sister was away on business and my father was in hospital so I had no-one to consult about it. I interpreted the wrist gesture as a reference to a bracelet or bangle. Mum would soon be distracted by this pleasant reference and abandon the obviously unpleasant association. Later, when my sister and I were able to compare notes, it transpired that as an emergency measure some weeks before, Mum had been put into respite care. Almost immediately my sister had received a distress call from the Nursing Home complaining that Mum was violent and they couldn't cope with her. When my sister arrived (and this involved an instant car trip of more than five hundred miles from Adelaide to Melbourne) she found that they'd placed Mum under physical and chemical restraint. Yet Mum was gentle, never violent towards us. She probably thought she was being abandoned. But maybe, just maybe, more sympathetic or empathetic handling on the part of the Nursing Home staff, an effort to communicate with her and set her mind at ease, might have avoided this episode.

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Conveying the message:
Every person with dementia was once a whole person, functioning the same as you and me. We're dealing with the breakdown, or decay if you like, of a human intellect. This is subtly different from dealing with a person who's been intellectually challenged from birth. That person has probably improved to this point and, with care and training, may continue to improve. A dementia sufferer can only deteriorate both intellectually and physically. However bits and pieces of that person remain throughout the course of the disease. And it is these bits and pieces of intellect, of sensibility, of the person that we must continue to contact. People with dementia are aware of their own deterioration and, with true human resourcefulness, they compensate. For instance my mother, who clutches her wrist and says "this thing here..." she can no longer recall the right words but she can still construct part of a sentence which conveys the message if you listen hard enough. During the next few days, by all means consider "Practical Solutions in dementia care"... and please include in those Practical Solutions a growing awareness of the person who happens to have dementia.

Minnie at 20
Minnie aged 20

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