Colin Martin was diagnosed with dementia five years ago. His wife, Kay Martin, is now his fulltime carer. They are both in their eighties.
“Colin was in denial for two years. I had picked up the signs long before he was diagnosed,” says Kay, secretary of the Onkaparinga Dementia Friendly Alliance.
“In 2019, Colin attended the Memory Clinic at Flinders Medical Centre and was diagnosed with dementia.
“Since that time it has been a downhill slide. We were lucky because we had a good GP who understood dementia and because Colin and I had many years of retirement before Colin was diagnosed.”
But the journey has not been easy. Kay says that as Colin’s dementia progressed, family and friends fell away because it was hard for them to cope.
“I joined the alliance because I was looking for social interaction with like-minded people. Over our journey I gathered valuable information that I now pass on to others in the same situation,” she says.
“I struggled to get the help I needed and I wanted to pass on everything I had learned along the way.”
The Onkaparinga Dementia Friendly Alliance is a not-for-profit organisation run by volunteers comprising people living with dementia, carers and family members, and former health professionals.
Alliance chair Marion Cohen says the organisation’s main aim is to increase awareness of dementia so that those living with dementia can live full lives and, along with their carers, find the support and assistance they need.
The alliance runs fortnightly cafes for people living with dementia and their carers at the City of Onkaparinga’s Elizabeth House in Christie Downs. Alliance members also attend a monthly table at the Colonnades shopping centre.
At other times, the phone runs hot as carers and those living with dementia seek information and advice.
“Those who come to the Elizabeth House café or contact us in other ways are at varying stages of dementia or caring for those with dementia. All their needs are different,” says Marion.
“At the café, we have singing, dancing, games and speakers. Some people want to socialise, others just want to talk with other carers or one of the alliance committee members. We offer whatever individual support they need.
“We walk the journey as people decline. Often there is a cycle of restlessness arising from physical and psychological pain. Typically people cycle from acceptance to depression as their journey declines. Our alliance members are always on hand to support.”
For Kay Martin, the group of volunteers running the alliance has been a godsend.
“They are so dedicated and work as a family. We are very passionate about making the community more dementia friendly. We are a very tight-knit group,” she says.
The alliance is supported by the City of Onkaparinga’s Inclusive Communities Project Officer, Andrew Brown, and its Active Ageing and Disability team.
The council’s inclusive-communities and active-ageing programs help community members to stay connected, get active and maintain brain health through initiatives such as a dementia-friendly garden, social events and affordable fresh food at the council’s positive ageing centres.
The Active Ageing and Disability team offers additional services and support, focussed on awareness, prevention and respite care.
“Good sleep, diet and exercise are three key lifestyle factors that can reduce the risks of dementia,” says Judith Lowe, the council’s Sustaining Independence and Wellbeing Project Officer. “We help people understand the risks and support them to make everyday changes though our free Living Well Matters workshops.”
The team also provides flexible in-home and centre-based respite services suitable for individuals living with dementia and their carers. These require a MyAged Care referral.
About dementia
Dementia is not one specific disease but a collection of symptoms caused by disorders affecting the brain including Alzheimer’s disease, vascular dementia and Lewy body dementia.
While dementia affects people differently, it generally affects mood, memory, thinking and behaviour.
According to Australian Institute of Health and Welfare statistics, around 15 in 1,000 Australians have been diagnosed with dementia.
This translates to more than 400,000 people nationally and at least 2,700 people within Onkaparinga. Both figures are expected to double by 2058.
While dementia can be detected in younger people, the risk increases with age – and in particular for those aged over 65 years. Other risk factors include genetics and family history, obesity, smoking, high blood pressure, hearing loss, depression and diabetes.
Risks can be reduced with positive health behaviours such as social engagement, education and physical activity.
Dementia information and support
Dementia Friendly Alliance
Phone: 0416 570 073
Email: odfasa@proton.me
Website: https://www.odfasa.com/
Dementia Friendly Café
1-3pm, second and fourth Thursdays of the month
Elizabeth House Positive Ageing Centre
112 Elizabeth Rd, Christie Downs
phone: 8384 5170
Elizabeth House website
Dementia Australia
https://www.dementia.org.au/
National Dementia Helpline: 1800 100 500
Memory Clinic, Flinders Medical Centre
Memory Clinic webpage
City of Onkaparinga
Ageing well services and information
Living Well Matters workshops
PICTURED: Marion Cohen and Kay Martin of the Onkaparinga Dementia Friendly Alliance