New support group helping people with dementia remain active and social

Orange local Russell Martin was just 61 when he was diagnosed with dementia. 

Now Russell is working to build a peer support group to help others like him with the challenges they face so they can remain active and engaged in the community for as long as possible

“I was diagnosed about four years ago with dementia,” Russell said. “And that itself is a challenge: there’s 1084 forms of dementia and they always say, ‘If you've met one person with dementia, you've met one person with dementia’.” 

Russell’s first indication that something was wrong was when he started having difficulty with simple tasks like driving or pouring a glass of wine.

At first, he thought it was his eyesight, but after a visit to the optometrist uncovered nothing of concern, he sought further help.

“It took about two years to get diagnosed because they were looking for a lot of other things…  and ended up having to get a spinal tap test to actually have a definitive diagnosis,” Russell said.

Russell was diagnosed with Posterior Cortical Atrophy (PCA), a rare, visual variant of Alzheimer's disease that affects the parts of the brain responsible for spatial perception, complex visual processing, spelling and calculation.

“Which basically means that I'm going blind and I'm losing my memory and so it explained everything that was going wrong, what I was having difficulty with,” Russell said.

“I was working with the Department of Agriculture for 30-odd years, I have four degrees and I can't write a sentence anymore… I finished up being Director of Intellectual Property and Commercialisation with the department and now I have trouble putting my underpants on…

“It’s not the diagnosis you want when you're just retired, you know. Retirement is about going overseas and doing all this travel and I have a lot of trouble just getting around Orange these days.” 

While connecting with organisations like Dementia Australia greatly helped Russell on his journey, he said it was talking with other people living with dementia that was the most beneficial. It’s why he has now helped to start a group to connect people living with dementia and experiencing cognitive changes. 

“I did a Zoom linkage with Dementia International and had a lot of conversations with those people and I learned more in that environment than I did with any neurologist or anybody else,” Russel said.

“And I wanted to start this group so that we can have a conversation on a regular basis and talk to each other about what's happening in our dementia life. What's working? What's not working? What solutions have people found to be successful? Because there's a lot of people out there who are just reinventing the wheel, day after day, and it shouldn't be that hard… everybody coming to dementia as a new diagnosis, they start from scratch again and I think that's a real shame.”

For many people living with dementia, staying home where it is familiar and safe can feel like the easiest option, but Russell believes that a support group, connecting people living with dementia with others like them will enable them to remain active and social.

“This group, I want to try and get awareness of dementia out in the community, but more importantly, people with dementia feeling confident and capable about remaining in the community as long as possible,” Russell said.

The Dementia Peer Support Group held its first meeting on Friday, November 3 at the Seniors Village Hub, Nguluway Ngurang, 77 Kite Street.

At this stage, the plan is for the group to meet on the first Friday of every month except in January.

The group is one of a number of services being introduced by the Orange

Community Dementia Alliance to make Orange more ‘dementia friendly’.

The Orange Community Dementia Alliance was formed in February and is made up of representatives from 17 local service providers, including Orange City Council. For more information, contact 6393 8600.