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Social disconnection in people living with dementia and their carers

A survey conducted by Alzheimer’s Australia has found that both people living with dementia and their carers tend to often experience embarrassing situations and feelings of incompetency.

A large percentage of people living with dementia and their carers expressed feelings of emotional disconnection and inadequacy (Source: Shutterstock)
A large percentage of people living with dementia and their carers expressed feelings of emotional disconnection and inadequacy (Source: Shutterstock)

The survey aimed to explore the community’s beliefs and attitudes about dementia and how these impact on the experience of people living with dementia and their carers. Participants consisted of a mix of people living with dementia, carers, and the general public.

A total of 94 percent of respondents who have been diagnosed with dementia claimed that they had encountered embarrassing situations as a result of their dementia, while almost 60 percent of carers had found themselves in embarrassing situations because they are supporting someone living with dementia.

“People in the public are embarrassed and uncomfortable around me at times and having been a social person it upsets me that they think I am stupid,” an individual currently living with dementia says in the survey.

Both carers and people living with dementia reported high levels of loneliness. It was also noted that carers and people with dementia struggle with feelings of disconnection with others in their community.

“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,” describes a carer.

Alzheimer’s Australia National Chief Executive Officer Marie McCabe says how communities respond to both people living with dementia and their carers can have a profound effect on their wellbeing.

“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,” says Ms McCabe.

Encouragingly, results also displayed a trend of one in two members of the public being frustrated by their lack of understanding about dementia.

“I would like to learn more about the things I can do in someone’s company with dementia to make them and their carers more comfortable,” claims one of the survey participants.

The survey has also sparked calls for greater awareness and understanding of dementia from the general public to provide people living with the condition and their carers more support and emotional connection.

“The way we respond as a community can leave people with dementia and their carers feeling socially embarrassed and uncomfortable,” says Ms 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.”

The theme for Dementia Awareness Month this September is You Are Not Alone. Alzheimer’s Australia is strongly encouraging all Australians to reach out within their communities to people living with dementia and find out how they can offer support.

For further information or support, contact the National Dementia Helpline on 1800 100 500 (free call) or visit www.fightdementia.org.au.

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