People with dementia and carers feel socially disconnected, survey finds
People living with dementia and carers experience embarrassing situations, feel strongly disconnected, feel less competent and sometimes feel useless, a new survey has found.
In a survey conducted by Alzheimer’s Australia, 94 per cent of respondents who have a diagnosis of dementia felt that they encountered embarrassing situations as a result of their dementia, while almost 60 per cent of carers who responded found themselves in embarrassing situations because they are caring for someone living with dementia.
What is encouraging is the same survey found one in two members of the general public are frustrated by their lack of understanding about dementia and want to know more about how they can help.
The survey, released for September’s Dementia Awareness Month, has sparked calls for greater awareness and understanding of dementia by the general public so people living with the condition and their carers can be supported to feel less disconnected.
“The way we respond as a community can leave people with dementia and their carers feeling socially embarrassed and uncomfortable,” Maree McCabe, National CEO Alzheimer’s Australia said.
“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,” Ms McCabe said.
A person living with dementia stated in the survey, “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.”
Both carers and people living with dementia reported high levels of feeling lonely and set apart from others in their networks and in the community.
Many carers and people with dementia struggle with feeling disconnected from others.
A carer 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.”
The overwhelming sentiment from the general public was a call for the need for more education. “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,” one survey participant said.
“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,” Ms McCabe said.
“Social engagement and keeping physically and mentally active are key to maintaining your brain health, for carers in reducing their risk of developing dementia or other health concerns and for people with a diagnosis to contribute to better health and lifestyle outcomes for them as the disease progresses.
“Alzheimer’s Australia is here to provide support for people, of all ages, living with all forms of dementia, their carers and families, and to empower and enable them to live well with dementia.
“We can also assist people to support the people around them living with dementia or caring for someone with dementia.
“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,” Ms McCabe said.
The Dementia and the Impact of Stigma Report released by Alzheimer’s Australia surveyed 1,457 people nationally including people with dementia, carers and the general public. The aim of the survey was to explore the community’s beliefs and attitudes about dementia and how these impact on the experience of people living with a diagnosis and their carers.
Throughout September for Dementia Awareness Month, with the theme You Are Not Alone, Alzheimer’s Australia is calling on all Australians to reach out to people with dementia in their community to let them know they are not alone and to find out more about how they can support them.
In Victoria, there are an estimated 104,622 people living with dementia. This is projected to increase to 280,241 by 2056.
There are an estimated 413,000 people living with dementia in Australia and an estimated 1.2 million people involved in the care of someone with dementia. Without a significant medical breakthrough, the number of people with dementia is expected to grow to more than half a million people by 2025 and 1.1 million people by 2056.
To download the report go to www.fightdementia.org.au/dementia-and-stigma. For more information and support call the National Dementia Helpline on 1800 100 500 or heading to www.fightdementia.org.au. Dementia Awareness Month 2017 is supported by financial assistance from the Australian Government.
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Notes to media: Stories in the media about dementia may prompt concerns or cause distress for audiences and readers. When writing or talking about dementia, please encourage your audience/readers with the number for our National Dementia Helpline 1800 100 500, a free call, telephone information and support service available across Australia.
What is appropriate language for talking about dementia and why do we need it?
The words used to talk about dementia can have a significant impact on how people with dementia are viewed and treated in our community.
In particular please avoid the use of the word sufferer or suffering – the preferred language is a person/people living with dementia.
Please read our Dementia Language Guidelines that have been developed by people living with dementia and carers.
About Alzheimer’s Australia
There are 413,000 Australians living with dementia. This figure is predicted to rise to 1.1million by 2056 in the absence of a significant medical breakthrough. Alzheimer’s Australia is the charity and peak body representing people of all ages, with all forms of dementia, in Australia. We provide specialised dementia information, education and support services. Call our National Dementia Helpline on 1800 100 500 or visit www.fightdementia.org.au