People with dementia are almost twice as likely to have high rates of loneliness compared to the general public, a new survey has found, and  people with dementia and carers are significantly more lonely than the general public.

The research, released at the start of Dementia Awareness Month in September, has sparked calls for greater awareness and understanding of dementia by the general public so people living with the condition feel less isolated and alone. There is an estimated 115,000 people with dementia in NSW, which is expected to grow to 128,500 people by 2020 and 272,000 by 2050.

Alzheimer’s Australia NSW CEO the Hon. John Watkins AM said, “The results of the survey, sadly, were not a surprise and highlighted the distress that impacts people living with dementia and their families and carers.”

“We believe a large part of that is because of the general lack of awareness and understanding of dementia, people simply don’t know how to interact with their friend or loved one with dementia.

“Treating people with the same respect, kindness, inclusiveness and thoughtfulness you always have is what makes a difference to them. They are still the same person – your parent, sibling, partner, relative, friend – as they were before the diagnosis. They just may need a little bit more time, understanding and support,” he added.

More than 1,500 people took part in the survey, including people with dementia, carers and members of the general public.

The survey also found that people with dementia report significantly fewer relationships than carers, who in turn have significantly fewer relationships than the general public. This was mainly due to friendships falling away, often leading to the experience of being socially isolated.

As well, people with dementia are more than twice as likely not to see any friends when compared with carers and the general public, were more than three times as likely not to have a confidant and were almost three times as likely not to have a friend to call on for help when compared with the general public.

“A diagnosis of dementia does not define a person. They are still the same person they have always been, and must be valued and treated as such. We, as a community, need to improve our understanding of dementia and start to treat people with the condition with the respect and dignity they deserve,” Mr. Watkins said.

People with dementia and carers are being encouraged to reach out for support either by calling Alzheimer’s Australia on the National Dementia Helpline on 1800 100 500 or heading to fightdementia.org.au.

Members of the general public are also being urged to find out more about dementia and increase their awareness and understanding of the condition.

“There are more than 353,000 Australians with dementia and an estimated 1.2 million people involved in the care of someone with dementia,” Mr Watkins said.

“It’s sad that people you know act differently towards you once you tell them about your condition [dementia]. Some avoid you so they don’t have to speak to you…yes, I have a condition but all I ask is people treat me the same…just give me a little time to take in what you’re saying and be patient with me, for I am still me,” one of the participants from the survey was quoted as saying.

Conducted by Alzheimer’s Australia, the survey was released to coincide with Dementia Awareness Month 2016.

For a copy of the survey and tips on how to support a person living with dementia to remain socially engaged, head to https://www.fightdementia.org.au/dementia-and-loneliness. Dementia Awareness Month 2016 was supported by financial assistance from the Australian Government and the NSW Government.

Alzheimer’s Australia NSW is the charity for people with dementia and their families and carers. As the peak body, it provides advocacy, support services, education and information. An estimated 353,800 people have dementia in Australia. This number is projected to reach more than half a million by 2030.