The power of the dementia community
My colleagues and I attended the Cambridge Memory Walk last weekend, and the atmosphere was special. Hundreds of people came together to remember their loved ones and raise money to support the amazing work the Alzheimer’s Society does. We swapped stories, enjoyed the sun, and hopefully pointed people in the right direction on the course!
With the wind in my sails, I, therefore, feel like starting this series properly with something light—what are the positives that living with dementia has brought to our family? This is something we have been asking at carer hubs that we have been joining recently, and it is a great way to break the ice.
When we first proposed starting with this question at carer hubs, I thought it would be very difficult, at least for me, to come up with answers. It’s not. Both I and the people we’ve met have lots of positives to talk about. For me, the things that I have appreciated the most are…
Bringing the family together
My siblings and I live sufficiently far apart that we would only see each other a few times a year and rarely talk in between.
Now, we have a WhatsApp group named 'Mum,' which sees an incredible amount of traffic (and not always about Mum I hasten to add), and we meet more regularly when we are sorting out 'Mum stuff' or visiting her in the care home. It’s great for us and our kids, who get to spend more time with their cousins, aunt, and uncle.
I’ve also had the chance to spend a lot more time with Mum. Often, it’s painful to witness her ability to tell stories diminish and her clear frustration with her situation. However, her sense of humour remains very much intact, and I enjoy both teasing her and being mocked in return.
The joy on her face when I bring the grandkids is truly amazing. She loves them, they adore her, and I believe that the ‘no-judgement here’ attitude you get from kids is genuinely healing for Mum.
Renewed career purpose
I wouldn’t have even begun to think about starting a company in the care sector if it weren't for my experience with Mum.
My career has been anything but planned. For 15 years, I’ve jumped from shiny thing to shiny thing and never really knew what I wanted to do long-term—perhaps that's why I went into consulting. Now, finally, I feel like I have a purpose. A lighthouse is shining on a very clear objective—to kick dementia up the arse.
I have developed some semblance of a set of skills. I can string together some electronics and tap some keys in roughly the right order to create some software to work with electrons. Surely, I can use these rough tools to do something useful in the fight against dementia…
Feeling part of a community
I’ve never been a natural community-oriented person. I'm not a churchgoer, part of a book club, or sports team. I'm more comfortable watching a film in a dark room.
Now, I feel like I have a connection to a community—the community of those living with dementia. I can connect with people in seconds by swapping stories about how our loved ones evaded our vain attempts to keep them in the house at night. 'She jumped over the pressure mat by the front door? That's nothing—my Mum climbed out of a tiny downstairs window at 3 in the morning’.
Through my experience, I've come to appreciate the value of community—the catharsis of sharing, the sense of relief when finding answers to questions you thought nobody else had, and the exchange of ideas to solve the latest crisis.
When this all began, I didn’t have any idea of what was available to support our family from government, councils, or charities. I’ve heard so many people talk about feeling the same way—in the beginning, there is no obvious central source of information. Now I know that communities are a great way to help people in the early stages.
So, where can you find a community to help you through your experience? Here’s some that I have found useful:
Dementia Talking Point – a helpful, and well moderated, forum for sharing experiences and getting advice:
Caring Together – a wonderful charity in the East of England who provide support and respite for unpaid carers, including those caring for people with dementia. Their carer hubs run throughout the region and are a great way of meeting people going through similar experiences:
If you are looking for a carer hub nearer you, Alzheimer’s Society has an excellent search tool: https://www.alzheimers.org.uk/find-support-near-you
Let us know in the comments in you have any suggestions.
