" People with dementia are almost twice as likely to have high rates of loneliness compared to the rest of the population. "
People with dementia the loneliest people in Australia

People with dementia are almost twice as likely to have high rates of loneliness compared to the rest of the population, 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, 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.

InfographicAlzheimer’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.

“This research backs up what we are told repeatedly by our clients, which is that when they received a diagnosis of dementia, friendships and some family relationships suddenly fell away,” Mr Watkins said.

“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.”

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.

“These results really are concerning and they speak to the loneliness that, astoundingly, is so prevalent when it comes to dementia,” Mr Watkins said.

“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.”

Conducted by Alzheimer’s Australia, the survey has been released to coincide with Dementia Awareness Month 2016, which starts today and runs throughout September. World Alzheimer’s Day is on Wednesday 21 September 2016. This year’s Dementia Awareness Month theme is You Are Not Alone, and 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.

“People with dementia, or people who are caring for someone with dementia, are not alone. There are hundreds and thousands of other people who are dealing with the same challenges, and there are people who are there to help.”

At a glance: Key findings from the Loneliness and Dementia Survey 2016

  • A person with dementia is more than twice as likely to have high levels of loneliness compared to the general public
  • People with dementia and carers are significantly more lonely than the general public
  • People with dementia (compared with carers and the general public) are:
    • More than twice as likely not to see any friends
    • More than three times more likely to not have a confidant
    • Almost three times as likely to not have a friend to call on for help compared with the general public
  • People with dementia report significantly fewer relationships than carers, who have significantly fewer relationships than the general public. This difference is mainly driven by friendships
  • More than 1,500 people responded to the survey

Some key quotes from survey participants

‘There is still such a stigma with the disease. A diagnosis of cancer and everyone rushes in to help. Dementia and everyone disappears!’

‘I’m amazed at how quickly friends and relatives have disappeared when the going got tough.’

‘We do seem to not get as many invites to social gatherings as we used to.’

‘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.’

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 is supported by financial assistance from the Australian Government and the NSW Government.

 Posted: August 31st, 2016
Discussion

Harry said:

My wife had Early Onset Dementia, but now she is 65 she is not classed as Early Onset any more by Alzheimer's Australia, so we both have to go to meetings with people who are a lot older than us and a lot less active. Early Onset should not mean from 1 to 65, when the onset was in their 40's

Gabby said:

More people need to know about these statistics!! My dad has early onset dementia and its getting hard to be there 100% for him as we are so busy (I've got 3 daughters). We just bought a Konnekt Videophone which allows us to talk to him face-to-face as often as we can. What else can we do to reduce his loneliness and isolation? I was reading that researchers found that having little face-to-face social contact nearly DOUBLES your risk of having depression 2 years later.

Francine said:

It breaks my heart to see how lonely my 66 year old sister appears to be ALL the time. She is the youngest by 20 years in the facility she lives in so I spend at least 20 hours a week with her to keep her company and to get her out as much as possible. I also attend to personal care and accompany her to medical appointments, along with a long list of things that would not get done otherwise. I also work 35 hours a week. Her friends have dropped away so the pressure on me is enormous. I have no time to see friends or socialise and have just had my application for the Carers allowance rejected. Surely given the complexity of what we do as Carers, even if some is in so-called 'care', the criteria needs to be reassessed?

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