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Intouch : In Touch Issue 75
Research 10 In touch Summer 2010 www.alzheimers.org.au Adiscussion paper released by AlzNSW in September, Addressing the Stigma Associated with Dementia, found that stigma can have a profound effect on people with dementia and their loved ones. It also found that dementia is the second most feared disease among seniors. The CEO of AlzNSW, The Hon. John Watkins, said the stigma associated with dementia often leads to exclusion, discrimination and disempowerment for both the person with dementia and their family members or carers. "It can also affect whether people with genuine worries about their memory seek medical help early, which is a big concern," John said. "If the symptoms are caused by dementia, getting a diagnosis as early as possible is important in helping to get the right information, treatment and support." To combat this, AlzNSW has called for a national campaign to increase the understanding of dementia and to ensure the retained abilities of people with dementia are recognised so they can participate in mainstream community life. "What we have found is that a lack of understanding of dementia and fear of dementia are the major causes of stigma," John explains. "The fear ranges from ignorance and fear of the illness itself, to fear of how to communicate and interact with a person with dementia." Sources of stigma In surveys conducted for the discussion paper, carers of people with dementia talked about the negative community attitudes towards the person with dementia. "I explained my husband's problem; the response was 'If you are going to have an idiot on the street put a muzzle on him'," one carer said. Carers also talked about the isolation and loneliness that can be associated with dementia. A carer said: "People become very clever at being able to avoid you. It becomes a very lonely experience for many years." "Friends stayed away and treated the person as 'contagious'," said another. The surveys also found that 61 per cent of people did not believe the general public had an understanding of dementia and that dementia is the second most feared disease after cancer. As well, 76 per cent of carers surveyed stated they had, at some time, felt embarrassment or shame for the person they care for because of inappropriate social behaviour caused by the dementia -- an aspect of the illness which is not well understood by the general public. Many carers reported ignorance of dementia as a major reason for people's negative attitudes. Stigma survey results Improving public education will address the stigma associated with dementia, a new AlzNSW survey has found. "People with dementia can continue to lead a fulfilling and rewarding life and should be encouraged and supported to continue to participate in mainstream community life."
In Touch Issue 74
In Touch Issue 76