RDS member Anthea Bowker has generously shared her personal story with us, describing her family’s journey with her husband Keith’s diagnosis and what inspired her to begin fundraising for Rare Dementia Support.
In 2023, my husband Keith had a diagnosis of behavioural variant frontotemporal dementia (bvFTD) confirmed. His decline had been rapid, from living a very normal life with no real symptoms to requiring 24-hour care in a dementia specialist nursing home over the space of 6 months. Like many others, my family and I had never heard of FTD. It felt like stepping into completely unknown territory — full of uncertainty, confusion, and grief for the changes that had happened to the man that we love.
When we received the diagnosis, we didn’t know where to turn for help or understanding. The challenge with rare dementias like FTD is the difference in symptoms from what most people associate with dementia so our support network of friends, whilst well meaning, sometimes struggled to relate to what we were going through. Then, thankfully, we found Rare Dementia Support (RDS) which changed everything.
From the very first meeting, I realised how special this community is. Sitting in a room, in London, surrounded by others who “just get it”, was both comforting and grounding. There was no need to explain the unexplainable or to soften the truth – everyone there had personal experience. They understood the daily challenges and the emotional ups and downs that accompany conditions like FTD.
It wasn’t just the in-person meetings that helped. The online resources and discussion groups have been a lifeline for my family. My son, who lives in Australia, and family in England have been able to access information and guidance that helps them feel closer and more informed about Keith’s condition, even from afar. The online library, recorded talks, and advice from others walking the same path have provided us all with understanding and hope.
What I value most about RDS is that it offers not only emotional support, but also practical direction. When new symptoms arise — like changes in Keith’s speech or behaviour — I can turn to the group to hear from others who’ve been there before. I’ve learned so much from the collective wisdom within the community. It helps to know that what we’re experiencing isn’t uncommon, and that others have found ways to cope and even to adapt with grace and humour.
Through RDS, I’ve also had the chance to share my own experiences, which has been unexpectedly healing. Whether it’s discussing small coping strategies, navigating care challenges, or simply listening, there’s such a sense of connection and mutual strength.
Earlier this year, I wanted to find a tangible way to give something back — to help ensure that RDS can continue providing the amazing support to families like mine. That’s when I decided to take part in the Ultra Challenge London Summer Walk, raising funds for The National Brain Appeal, which helps fund Rare Dementia Support.
Now, at 68, I can assure you that signing up for a 25-kilometre (15.5-mile) walk around East London was no small undertaking! The route took us past some incredible landmarks — the Thames Barrier, Woolwich, and the O2 Arena. It also involved extensive stairs, tunnels and bridges which meant that we walked under and over the Thames!
The day itself was a mix of excitement, emotion, and lots of aching muscles. I met wonderful people along the way, including others walking for The National Brain Appeal, all with their own powerful stories and motivations. There was such camaraderie among us — a reminder that even in the face of difficult circumstances, kindness and connection can carry you far.
By the end, my legs were certainly reminding me of the effort, stairs were not my friends for a few days afterwards! But it was all worth it. So far, I’ve raised £1,438 plus £294 in Gift Aid, and I’m so grateful to everyone who has supported me. Every donation, no matter the size, helps keep this vital support available to those who need it most. Our son David, who lives north of Sydney in Australia, has also helped fundraise for RDS. He completed the New Zealand Sotheby’s Queenstown Marathon on Saturday 15th November, raising more than £500 so far.
Rare Dementia Support has given me more than information — it’s given me belonging, perspective, and hope. It’s reminded me that while dementia can take many things, it doesn’t take away the capacity for love, empathy, and connection.
To anyone reading this who might be newly navigating life with a rare dementia diagnosis, I want you to know: you’re not alone. Reach out, attend a meeting, either in London or the new regional meetings, explore the online resources. There’s so much knowledge and kindness waiting for you.
And if you’re able, consider supporting The National Brain Appeal or taking part in a fundraising challenge of your own. Every step – literal or metaphorical – helps families like ours continue to find their way through, with understanding and care.
Anthea Bowker
For more information about ways to fundraise for Rare Dementia Support please go to www.nationalbrainappeal.org/what-we-do/current-appeals/rare-dementia-support
To donate to David’s fundraising, go to www.justgiving.com/page/david-bowker-1
