Finding a life with dementia
To mark Dementia Action Week, Barb Reid shares her story and how she has been able to help others through the Knox Dementia Advisory Group.
Barb Reid sits opposite her framed family photos on a sideboard buffet and reflects: “This is my memory room … while I’ve still got them.”
After decades working as a legal secretary and then a case manager in a family violence centre, Barb describes herself as having an enquiring mind. About two years ago, she was diagnosed with a type of dementia affecting her frontal lobe.
This week is Dementia Action Week, a week that aims to help reduce the stigma and discrimination experienced by people living with dementia and their carers.
“After being diagnosed my world and my family’s world all blew apart and it took me a long time to start to gather myself and think, OK, this is it and I’ve got to find a life with dementia,” Barb says.
“I thought, maybe I can be of help with the Council asking for people with dementia to come forward for their Dementia Advisory Group. I had a lot to say.”
Barb is part of an advisory group who assisted the development and are now aiding implementing, the Knox Dementia Friendly strategy.
There are 3,219 Knox residents living with dementia and it is estimated this number will increase to 8,000 by 2058.
In July 2023, the Knox Dementia Friendly Action Plan was adopted by Council. The plan will guide Council and support Knox to work towards becoming a more dementia friendly community.
Council has partnered with Dementia Australia to build awareness, understanding and acceptance of dementia so that people living with dementia can participate and remain active.
“A lot of people who are diagnosed are older people who have no support, are not financially secure, who struggle anyway, and rely on their pension to live. I think there needs to be support for that age group,” Barb says.
“It’s a minefield to navigate support for dementia; it affects a lot of people and a lot of people don’t do anything about it.
“There needs to be some place they can go as a starting point when they’re diagnosed so they’re not on their own and they know there’s no need to be ashamed and there’s avenues for support.
“I think I was lucky with an early diagnosis. I had a lot of fear, being on my own without my husband, and when you’re frightened you put it away, you don’t want to deal with it.
“It was so hard to sit back in a quiet moment and think, what’s happening to me, why am I behaving like this? I couldn’t understand me.”
Barb bravely sought help and has advice for others in similar circumstances.
“All the advice I can give is, when you know there’s something wrong you must go to a doctor to seek help. I know it’s really upsetting but it will be OK.”
There are many types of dementia, including Alzheimer’s disease, vascular dementia, frontotemporal dementia and Lewy body disease. Anyone can develop dementia, though it is more common for people over 65. It is the second leading cause of death in Australia and the leading cause of death for women.
For more information about services and support for dementia, or to obtain an information pack, email [email protected] or call 9298 8000.
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