We know that planning for a healthy later life involves more than money. We also know that health is more than the absence of illness, and more than being physically functional. The evidence is clear that social engagement and connectedness are key to health in later life, although researchers don’t know how these psycho-social drivers achieve this effect.
So, what happens to social connections if you are diagnosed with dementia?
Feedback from a state wide consultation we undertook some years ago shows that people in Western Australia living with dementia find themselves socially impacted and isolated very quickly after diagnosis, even if their symptoms haven’t changed. They wanted opportunities for continued engagement to be created in the community to allow them the simple pleasure in life of socialising.
People with dementia often tell me they want to continue to participate in everyday life, but require support and understanding from the rest of us to do so. I hear regularly of people with dementia choosing to live in a self-imposed exile at home because they feel too stigmatised if they move about in the community.
There is much that can be done to create a community that is dementia friendly. One key initiative that has seen a groundswell of support since its introduction in Western Australia only three years ago is the “Memory Café”. Simply, the concept is to provide an opportunity for people with dementia to meet and socialise over a cup of tea or coffee in a place where they feel safe from stigma, and where they can share with those on a similar journey.
A Memory Café doesn’t look any different to any other day of operation, perhaps only more laughter and chatter than usual. However, for those with dementia, it is radically different. They have the comfort of knowing that the staff have been trained to understand and communicate with them, and that those around them share their experience of the dementia journey. They lose their self-consciousness and feel safe.
I recently spoke to a man from the northern suburbs at the Garden City Memory Café. When I asked why he travelled so far to attend, he said it was the best day in his month as he could relax knowing that it was ok for him to have dementia. The recent opening of the Memory Café in Toodyay had 59 people turn up.
There are now nine Memory Cafés operating in metropolitan Perth and three in regional Western Australia. Alzheimer’s WA is in discussions to help facilitate the opening of several more.
A group of people who regularly meet at a Memory Café in the northern suburbs have taken the concept of a supportive community one step further, and created a Memory Café for people diagnosed with younger onset dementia – dementia diagnosed before the age of 65.
It is estimated there are just over 2,000 people in Western Australia living with younger onset dementia.
Thirty couples, ranging in age from 50-65, are now part of the Younger Onset Dementia (YOD) Support and Social Network based in Perth. Vicki Barry, a founding member of the group and carer to her husband who was diagnosed with younger onset dementia a number of years ago, said they started the group in 2017 as a way of providing support to other families who were going through similar experiences.
“The YOD Support and Social Network is really a community of care and support for carers and their loved ones living with younger onset dementia.
“The issues we face with younger onset dementia are very different to people diagnosed with dementia after the age of 65. The impact is enormous. We are mostly still trying to work and raise families.”
Vicki said people come from all over Perth and even regional areas to take part in regular activities organised by the group.
“The Memory Café at Waldecks in Kingsley is one of the many social activities we enjoy each month.”
The group also arranges monthly outings, such as bowling, the movies, picnics and pub lunches, as well as day trips to Mandurah, Toodyay and York. A two night trip to Rottnest is planned for later this month.
“We have developed a strong bond and provide a lot of support to each other. We have a lot of experience and skills and the best understanding of what we are going through,” she said.
We have all heard it said that the best things in life are free. Friendships are priceless. We also know the important sense of belonging we have when we engage with social groups. Initiatives such as Memory Cafés help to reduce the stigma attached to dementia and instead, help to develop connections that enable and support people living with dementia to remain socially and physically active rather than be confined within the four walls of their home.
If you, a family member or friend live with dementia, visit a Memory Café and enjoy a coffee and some great conversation. If you can’t find one in your local area, contact Alzheimer’s WA. Maybe it’s time for your local community to join the Memory Café movement across Western Australia.