31/08/2017 2:32 PM AEST | Updated 31/08/2017 2:32 PM AEST

Loneliness And Lost Independence: Living With Dementia

Carers and sufferers battle stigmas surrounding the illness.

An overwhelming number of dementia sufferers and their carers are struggling with feelings of isolation and social disconnection, while suffers also battle feelings of uselessness, a new study shows.

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, while many carers and people with dementia struggle with feeling disconnected from others.

The Alzheimer's Australia study found 94 percent of respondents who have a diagnosis of dementia felt that they encountered embarrassing situations as a result of their dementia.


And the way we respond as a community can leave people with dementia and their carers feeling socially embarrassed and uncomfortable, said Maree McCabe, National CEO Alzheimer's Australia.

"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," she said.

"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."

The same survey of 1,457 people also 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.

"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."A survey respondent

Almost 60 per cent of carers who responded found themselves in embarrassing situations because they are caring for someone living with dementia.

Alzheimer's Australia president Graeme Samuel told the ABC one of the biggest impacts on a person diagnosed with dementia is when they lose their driver's licence, and thus their feelings of independence.

"When you're dealing with someone that is living with dementia, understand that they've many, many given years of their life to the community," Samuel said.

"What they want in return is respect, dignity, compassion -- to be treated as normal people, not as someone who has got some disease or needs to be avoided, or cause embarrassment."


Samuel told the national broadcaster of his heartbreak at watching some of his mothers friends of 50 or 60 years standing fall away after she began showing signs of dementia.

"She wasn't able to go to movies that would last an hour, hour-and-a-half or two hours, because she didn't have the ability to be able to sit through that process," he said.

The survey, released for September's Dementia Awareness Month, is aimed at exploring the community's beliefs and attitudes about dementia, as well as at sparking calls for greater awareness by the general public.

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.

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.A survey respondent

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 unless there is a significant medical breakthrough, Alzheimer's Australia said.

Keeping people living in the community and keeping them socially active can stave off the symptoms and impacts of dementia, said Samuel.

It's a view shared by McCabe.

"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," 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."

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.

During Dementia Awareness Month this September, people with dementia and carers are encouraged to reach out for support by calling Alzheimer's Australia on the National Dementia Helpline on 1800 100 500.