The great dementia disconnect

Why do people with dementia and their carers feel strongly disconnected from society?

The great dementia disconnect

A survey conducted by Alzheimer’s Australia has revealed that people with dementia and their carers feel strongly disconnected from society.

The Dementia and the Impact of Stigma Report surveyed 1457 Australians, including people with dementia, carers and the public.

The study showed that 96 of respondents who have dementia felt embarrassed because of their condition. It also revealed that 60 per cent of carers also found themselves in embarrassing situations because they were caring for someone with dementia.

It is estimated that, in Australia, there are 413,000 people living with dementia and around 1.2 million people caring for them.

The survey has highlighted the need for greater awareness and understanding of dementia to help those with the condition – and their carers – feel less embarrassed and more a part of the community.

“The way we respond as a community can leave people with dementia and their carers feeling socially embarrassed and uncomfortable,” said National Chief Executive Officer of Alzheimer’s Australia Maree McCabe.

“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.

“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.”

High numbers of carers and people with dementia said that they often feel lonely and set apart from the community.

One 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.”

Staying mentally and physically active are key factors for maintaining brain health, both for people with dementia and for their carers. Social engagement also contributes to better health and lifestyle outcomes as the disease progresses.

“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,” said Ms McCabe.

“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.”

Do you think it is right that people with dementia feel this way? How much do you know about dementia? Would you like to know more about this condition?

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    COMMENTS

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    tisme
    5th Sep 2017
    10:09am
    i care for my mother who has dementia mum wont go out because she doesnt feel safe. she wont join the seniors club because she doesnt feel like she fits in. I wont go out for the obvious reasons but also i dont have the strength
    trickyv
    5th Sep 2017
    10:49am
    I am sole carer for my 94yr old mum who is still living in her own home, hardest thing is finding out information, yes, there are plenty of pamphlets and people who can help but it is a maze and you find out snippets here and there because each person is individual and their needs are so different. Fortunately for me I have mum into two days out with uniting care and anglican care who are fabulous and mum loves the days out but would rather sit by herself than interact but the social side with other people is great for her. Mum is now getting rather irritable with things as she is realizing she is not managing as well as she was and is getting frustrated with everyone and everything. I have joined an dementia group which has helped me tremendiously to understand just how good mum is compared to other sufferers, so we take each day as it comes and have laughs along the way .
    Nan Norma
    12th May 2019
    8:18pm
    Ring aged care.
    Eddy
    5th Sep 2017
    3:07pm
    I sympathize with all carers, it is a thankless task. My wife and I are carers for her 94yo mother who, while she does not have dementia, can get very confused. She also has macula degeneration so can no longer read, knit or watch TV. Years ago my wife made her mother a promise that she would never let her go into a nursing home. We describe it as looking after as 50kg toddler, she can not be left on her own for fear of what she might do. We cannot go out together anytime we feel like it, even for a short time; going to the RSL for lunch or dinner is out of the question. For saving the government thousands of dollars a year in aged care we receive the princely sum of $125 per fortnight, although I must concede that DVA (Mum is a war widow) are very generous in providing material aid. We are in our mid 70s and we see no end in sight and, at times, become so depressed. We have instructed our children that under no circumstances are they to even consider taking us in when we can no longer look after ourselves.
    Nan Norma
    12th May 2019
    8:05pm
    I understand how you feel. When you are in your seventies you don't know how many active years you've got left and want to make the best of them.
    Jenny
    5th Sep 2017
    3:11pm
    I care for my husband who has dementia along with other physical problems. He will go out to medical appointments, although reluctantly, and refuses to leave the house for any social reasons. This means that I seldom am able to go anywhere myself, as I cannot leave him alone for any length of time. I imagine that this is a pretty common problem, but I do miss having the opportunity to catch a movie at the cinema, or attend functions of interest. Most of my close friends are either widowed, or have husband's who function fully, so although sympathetic they can't relate to my situation. The only way for me to get some freedom of movement and be able to be part of the social community would be to put him into respite now and again, but I feel guilty about it because I know he doesn't like it. So yes, I do feel disconnected in this role, while he seems perfectly content. I tried the day care option a couple of times, and he didn't want to go back there.
    Nan Norma
    12th May 2019
    8:08pm
    In a way its not fair to you, is it. You are doing your bit but are missing out on life.
    Bren
    5th Sep 2017
    4:29pm
    Don't mean to nitpick but are there really 1,200,000 carers for 413,000 persons with dementia ? That's an average of almost 3 carers per patient.
    Rosret
    5th Sep 2017
    9:34pm
    Yes, its usually just one poor person whose life is sucked out of them as they become entombed in the world of a surreal existence.
    People who are on the gradual degenerating path change personality, make demands that are pointless and often expensive and it does make friends stay away.
    It is such a horrible way to end our days on earth.
    Eddy
    6th Sep 2017
    12:51am
    Bren, possibly what these figures mean is that there are 1.2M carers (possibly from the Centrelink database) yet only 400K odd are caring for persons with dementia, the rest could be for a variety of reasons like frail aged, brain injuries, disabled adults and children etc.
    Napoleon
    6th Sep 2017
    4:11am
    Here I am at 4.00 a.m. in the morning, reading your experiences and saying I can relate to that !. My husband and I are married 46 years. He has gone from an active hard working farmer (all his life) to a person who has no interest in farm life. Now with heart problems, diabetic, (wet) macular degeneration in both eyes, and the onset of Alzheimers he lives in a bubble of 'self'. As others have commented he also has no interest in social days. When I am low I remember that his Dad also had Alzheimers in late 1970's. In those days there was no support, no respite, and I am grateful for the support given to me particularly by BLUE CARE. It is a matter of choice in that we live on a farm, isolation is an issue, husband will not contemplate a move. Family been on farm since 1925. Travel to specialists on a regular basis is most tiring 200 klms each way, however, we are listed to receive travel assist in time to come. Been through some 'challenging' times, 'challenging behaviours'- which is a drawback in seeking care. Music and lyrics give me considerable peace. It won't be this way forever - it just seems like it.
    Nan Norma
    12th May 2019
    8:14pm
    I don't envy you. As you say, it won't be for ever. try to look after yourself. As one support person told me, it like being on a plane when the oxygen masks drop. You must put your own on first before your child's.


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