The loneliness of dementia

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

These sad words are from a dementia sufferer who took part in a recent national survey, which found people living with dementia are the loneliest people in Australia.

The study, conducted by Alzheimer’s Australia, also found that people with dementia are twice as likely to be lonely as the rest of the population, while their carers were often significantly more lonely than the rest of the population.

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.

“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 says.

Mr Watkins says there is a general lack of awareness and understanding of dementia, as people simply do not 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,” Mr Watkins says.

“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.

Some of the other quotes from survey respondents include:

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

“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.”

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

“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.”

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 report significantly fewer relationships than carers, who have significantly fewer relationships than the general public. This difference is mainly driven by friendships.
  • 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 confidante.
  • Almost three times as likely to not have a friend to call on for help compared with the general public.

More than 1,500 people responded to the survey.

How can Oxley Home Care Help?

Oxley Home Care offers tailored, early intervention and health and lifestyle coaching to people with dementia. Each person assisted is treated as an individual with their own history, memories and likes/dislikes taken into consideration, with services offered from early onset dementia through to palliative dementia care.

Oxley Home Care’s support services for people with dementia and their carers include:

  • Personal care, showering, dressing, grooming, dental hygiene and denture care
  • Activities to assist and minimise behaviours
  • Preparing and serving meals
  • Daily living support, including domestic assistance
  • Transport to social events
  • Shopping and errands
  • Companionship and leisure activities

In addition, Oxley Home Care’s respite support allows carers to rest and re-energise with peace of mind, on a regular basis.

To find out more about getting the right support and care for you or a family member with dementia, contact Oxley Home Care on 1300 993 591.

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