The great dementia disconnect

A survey conducted by Alzheimer’s Australia has revealed that people with dementia and their carers feel strongly disconnected from society.

The Dementia and the Impact of Stigma Report surveyed 1457 Australians, including people with dementia, carers and the public.

The study showed that 96 of respondents who have dementia felt embarrassed because of their condition. It also revealed that 60 per cent of carers also found themselves in embarrassing situations because they were caring for someone with dementia.

It is estimated that, in Australia, there are 413,000 people living with dementia and around 1.2 million people caring for them.

The survey has highlighted the need for greater awareness and understanding of dementia to help those with the condition – and their carers – feel less embarrassed and more a part of the community.

“The way we respond as a community can leave people with dementia and their carers feeling socially embarrassed and uncomfortable,” said National Chief Executive Officer of Alzheimer’s Australia Maree McCabe.

“But small actions can make a big difference. A great starting point is treating people with dementia and carers with the same thoughtfulness, care, respect, kindness and inclusiveness you always have.

“If a person encounters challenges in their everyday activities they are naturally more likely to withdraw socially and become less engaged with their friends and family and will tend to drop activities they may have enjoyed for most of their lives.”

High numbers of carers and people with dementia said that they often feel lonely and set apart from the community.

One respondent said: “It is such a lonely and isolating condition. My mother’s friends stopped seeing her because she was difficult to engage with. She would often comment she hadn’t heard from them anymore. Heartbreaking.”

Staying mentally and physically active are key factors for maintaining brain health, both for people with dementia and for their carers. Social engagement also contributes to better health and lifestyle outcomes as the disease progresses.

“Dementia is a chronic disease of the brain and is a challenging experience; the social prejudice that is evident in these survey results only adds to the challenge,” said Ms McCabe.

“A diagnosis of dementia does not define a person. As a community, we must improve our understanding of the condition and treat people with dementia with the respect and dignity they deserve.”

Do you think it is right that people with dementia feel this way? How much do you know about dementia? Would you like to know more about this condition?

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