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Staring down stigma



Above: Image from Alzheimer’s Australia Victoria’s safe2walk program for people with dementia.

“It is unacceptable for people to live in shame because they have a medical diagnosis of dementia. It is also unacceptable for people to turn their backs on those with dementia because they feel uncomfortable.” 

By Keryn Curtis

There remains an unacceptable level of stigma in our community associated with dementia that needs to be overcome if Australia is to be a truly inclusive society, according to Alzheimer’s Australia national president and 2013 Australian of the Year, Ita Buttrose.

In her keynote presentation to the Alzheimer’s Australia 15th National Conference in Hobart, Ms Buttrose said that a national population survey in 2011 found that 44 per cent of respondents believed that people with dementia are discriminated against or treated unfairly, with 22 per cent indicating they would feel uncomfortable spending time with someone who had dementia.

“A pilot study last year showed that approximately one quarter of those surveyed would avoid seeking assistance for memory problems. As well, 60 per cent indicated that if they received a diagnosis of dementia they would feel a sense of shame, while nearly half said that they would be humiliated by the diagnosis,” she said.

Launching the report, Dementia Friendly Societies: The Way Forward, which calls for a coordinated national approach for Australia, Ms Buttrose said the way that a society promotes care inclusiveness and meets the needs of all of its citizens, no matter what their needs may be, was a test of its success.

“It is unacceptable for people to live in shame because they have a medical diagnosis of dementia. It is also unacceptable for people to turn their backs on those with dementia because they feel uncomfortable.” 

The dementia double whammy

In another conference presentation, QUT’s Professor Elizabeth Beattie, Director of the Dementia Collaborative Research Centre (DCRC) – Carers and Consumers, presented the results of research on the impact of stigma on quality of life for people with dementia and their carers.

She said a dementia diagnosis has a “double whammy” effect.  There is firstly the diagnosis itself and the challenge of dealing with the disease but she said the stigma associated with the diagnosis magnified the impact for both the person with dementia and their carer.

Professor Beattie said there was a significant loss of self-esteem, problems with social isolation as well as impacts on physical health for people living with a dementia diagnosis and for their carers; but there was very little research to date to understand or address the problem.

In the study, higher levels of perceived stigma among carers correlated most strongly with high levels of activity and social engagement. 

“When people go out, they feel bad and the more impaired the person with dementia becomes, the more difficult it is for the carer to deal with the perceptions and responses,” Prof Beattie said.

She also said there was a strong association between perceived stigma and the way in which the person hears the diagnosis.

“The way you hear it can influence the way you feel about it,” she said. If it is presented as a condition that the person and their family need to adapt to and learn to manage like any other illness, that can have significantly better outcomes than being told that they have a poor or limited outlook as a result of the condition.

An issue for all Australians

Ms Buttrose said that with more than 3 million people expected to develop dementia between now and 2050, it was important to have dementia friendly communities and organisations that are inclusive of people with dementia. 

“Walking groups, choirs, school programs, visits to art galleries, work place engagement programs, the use of technology and improved streetscapes are all building blocks in achieving a dementia friendly society,” said Ms Buttrose.

“Each of us has to be engaged in promoting awareness of dementia and ensuring that people with dementia have equal access to the services that we all enjoy in the community,” Ms Buttrose said.



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