Jeannie Adey says having dementia is tough.
“I cried for days and days … I couldn’t remember anybody and I couldn’t do things and I just cracked up, I just couldn’t stand it,” the 71-year-old said.
Mrs Adey is one of 472,000 Australians living with dementia.
Without medical intervention, the rate of dementia is expected to increase to nearly 1.1 million people in less than 40 years, according to figures from Dementia Australia.
Mrs Adey’s husband, Dick, has been her full-time carer since she was diagnosed about five years ago.
Soon after the diagnosis, the Sunshine Coast couple discovered the Dementia Cafe — a low-key, fortnightly gathering for people in the community affected by dementia.
Initially, Mrs Adey was nervous.
“Dick came home he said, ‘Do you want to go to see this?’ and you could see the fear and he said, ‘Come on, give it a try’,” she said.
Sense of belonging
Not-for-profit group NoosaCare started the Dementia Cafe in 2018 with a grant from Dementia Australia.
It’s for those living with dementia and their loved ones.
The term dementia encompasses a number of illnesses that cause a progressive decline in a person’s functioning including Alzheimer’s disease.
Mr Adey said cafe gatherings were “tremendous” for carers.
“This isn’t only for the dementia sufferers, it’s also a large part for the carers. I get the feeling that the carers are the missed-out group,” he said.
“The vast majority of us here are with our partners 24/7, and it’s not an easy job but we wouldn’t change it for anything.”
He said being able to talk, laugh and connect with others experiencing similar things had been important.
“It’s just great to talk to other people, get their experiences and think, ‘OK, so you’re not on your own, this is what people are going through and we’re not doing too badly at all’.”
‘Not the most pleasant conversation’
Rosa Woegerer’s husband of nearly 64 years is in full-time care and attending the fortnightly gathering is part of her much-needed social connection.
“So that makes it difficult for me to have a social life to a certain extent but this for me is part of a social life because those people understand, they’ve been through or go through the same thing.”
Mrs Woegerer said it had also been difficult to maintain their networks since her husband John’s diagnosis.
“You not only lose the people who have dementia or Alzheimer’s … [you] also lose friends left, right and centre because people can’t seem to cope,” she said.
“I find it difficult sometimes with John to have a conversation going, you talk about something and the next second he is talking about something completely different, where you have no idea what he’s talking about and people find that a bit off-putting.”
Changing language breaks down stigma
NoosaCare has also released a “dementia-friendly” brochure to support and educate the wider community, businesses, and emergency responders about the condition.
It covers a range of topics including communication with a person with dementia, future planning, local services, medical care, and driving.
Cafe facilitator Danah Wood said, on advice from Dementia Australia, the updated resource included advice on how to discuss dementia in a more inclusive and sensitive way.
“We’ve got a driving section in the pack and the change in that is it’s gone from having a conversation about taking the driver’s licence off someone living with dementia to now having the conversation with someone living with dementia and discussing when are they ready to relinquish their licence,” Ms Wood said.
Cafe volunteer Bill Jory said the updated language contributed to breaking down stigma.
“The stigma and being afraid of it [dementia] is softening,” he said.
“Even though a person has dementia, they still have strong feelings and they just don’t know how to get them out sometimes and they get frustrated because they can’t do the things that they used to do.
“I don’t know what the answer is but in society we need to be more open-minded about dementia and just respect people for that.”
Fellow volunteer Lee Marsden, who has had three family members with dementia, agreed.
“That companionship, knowing there are other people in the group going through exactly the same as what they are, I think that helps them a lot.”
Dick Adey urged others supporting a person with dementia to tap into support networks instead of trying to battle it alone.
“I think that’s the worst thing they can possibly do because then you become very insular,” Mr Adey said.
“Getting out into a group like this, you realise you’re not on your own … and you really do need as much outside help as you possibly can get.