People living with dementia and their carers experience embarrassing situations, feel strongly disconnected and less competent, a new survey has found.
The results of the survey, conducted by Alzheimer’s Australia, suggests 94 per cent of respondents who have a diagnosis of dementia felt that they encountered embarrassing situations as a result of the disease, 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 to coincide with September’s Dementia Awareness Month, has sparked calls for greater awareness and understanding of dementia amongst the general public so people living with the condition and their carers can be supported to feel less disconnected.
Maree McCabe, National CEO Alzheimer’s Australia said the way we respond as a community can leave people with dementia and their carers feeling socially embarrassed and uncomfortable.
“But small actions can make a big difference. A great starting point is treating people with dementia and their carers with the same thoughtfulness, care, respect, kindness and inclusiveness you always have,” 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 disconnected from others in their networks and in the community.
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.
“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.”
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.
As part of Dementia Awareness Month, the theme being You Are Not Alone, Alzheimer’s Australia is calling on all Australians to reach out to people with dementia in their communities to let them know they are not alone and to find out more about how they can support them.
You can download the report by clicking here.
For more information and support call the National Dementia Helpline on 1800 100 500.
Dementia Awareness Month 2017 is supported by financial assistance from the Australian Government.