Fear and Public Rudeness Still Prevalent in Dementia
Here, on Our Alzheimer’s, we have often discussed the stigma faced by people with dementia. It adds to their burden of coping with a degenerative neurological disorder. A recent study of 2000 people with Parkinson’s disease found that over half of them had experienced rudeness and hostility. Many had been laughed at and some had been accused of being drunk.
In 2010, the Oscar winning actor Helen Mirren called for a revolution in attitudes to sufferers of Parkinson’s disease. Talking to a reporter from The Guardian newspaper, Mirren described a close friend’s 10 year struggle. She described his condition as, ‘very wobbly on his feet, uses a stick, has shaking hands, has an increasing problem with walking, falls and can’t rely on his balance.’ What makes life with Parkinson’s so difficult is the social stigma and the fact that sufferers don’t know from day to day whether they can do something.
People with a degenerative or dementia-type illness (Alzheimer’s, Vascular dementia, Huntington’s disease) often talk about similar experiences. It contributes to them becoming more socially isolated because of the way they have been treated in shops, on public transport and in conversation with strangers and people closer to them. The person with the brain disorder and their caregivers will often react by withdrawing from social situations that may undermine their confidence or feel threatening.
Social theorists have established that social environment is one of the key factors in determining quality of life in old age as well as in earlier phases of life. Social participation in all forms, especially social relationships with members of their family or friends and engaging in various forms of activity are things that are central to ‘successful aging and healthy aging’.
So, when health breaks down and when people’s social circles and activities begin to diminish a vicious circle of withdrawal and unhappiness results. It must feel even worse to have to put up with public abuse or the indifference some people have to the problems sufferers have. And these problems extend to communicating, mobility and with the issues of trying to keep up in a world where you have slowed down and it seems to have speeded up. Helen Mirren put it very succinctly when she said those with Parkinson’s are ‘not some weird people on the edge of human experience.’
People with Parkinson’s diseases shouldn’t feel they need to hide away simply due to other people’s fears. This is also the case with Alzheimer’s and other neurodegenerative diseases. These people are ‘us’ and as such they need to feel they can step into the open without fear.
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Christine Kennard wrote about Alzheimer’s for HealthCentral. She has many years of experience in private and public sector nursing care homes for people with dementia. She has worked in a variety of hospital, public and private health settings and specialized in community nursing. Christine is qualified in group analytic psychotherapy, is registered in general and mental health nursing and has a Masters degree.