"Empowering People Living With Dementia" - The Brain Charity.
Dementia Action Week (UK) 2025
This Dementia Action Week Campaign (19-25 May), led by the Alzheimer’s Society (UK), focuses on raising awareness of symptoms and promoting early diagnosis of Dementia.
For new readers, I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?
I write about my caregiving experiences with a particular focus on cancer, dementia and grief. The idea behind Carer Mentor is to build a care-centred community network, dedicated to sharing empathy, offering personal insights, and recommending helpful resources.
The desktop version of the publication serves as the website—a one-stop hub to visit when you’ve limited time and energy. There are many anthologies, links to resources, and directories to other publications where authors share their experiences—a portal of hope. ❤️
Here is a link to the Dementia Anthology, where authors share their personal experiences.
In the previous Carer Mentor article, I shared the checklist of Dementia symptoms and some resources to support conversations with a loved one or friend. The article leverages the information and knowledge of The Alzheimer’s Society.
Every situation is unique. In 2015, my Dad’s traumatic hospitalisation and subsequent behavioural episodes were a torturous period. It was a watershed moment, a tipping point for all three of us. Before this, his heart failure, rheumatoid arthritis and mobility issues were stable and manageable.
Sometimes, cognitive changes are gradual, making it more challenging to discern the shift in symptoms. Ours was an abrupt change with a broader, more profound impact, due to the destabilisation of Dad’s heart condition.
Dad’s frustration, depression, and impatience with himself were painful to witness. He would look at me and, without words, helplessly communicate ‘He knew, I knew that he knew lots of things were wrong’—I think others know that gaze.
This is why, when friends have asked me for advice, I suggest creating a comfortable space for their parent, friend, or partner to share their worries first, in those early stages.
Asking gentle, open questions with empathy is easier said than done, because the conversation and the questions themselves can evoke a myriad of emotions.
Initially, when I was torn between work and my parents’ needs, I was in ‘project management’ mode, trying to identify ways to eliminate safety risks—installing motion-detecting lights, and changing the bathroom door handles to be openable from both sides.
While there were no more ‘locked in bathroom’ events, I had to reconcile with myself, the hard way, that it’s impossible to prevent every issue. Life happens. We can’t wrap them in bubble wrap and stop them from doing things!
We’re perfectly imperfect humans doing our best. Our loved ones with dementia may not be able to articulate their frustration and other emotions. Simply being present and holding hands, or listening to music together or narrating through ‘remember that time when..’, are powerful loving ways to interact together.
During Dementia Week, 2024, I wrote about ‘Connecting with Dementia Sufferers’, meeting them where they are, not expecting them to meet us where we are. Naomi Feil’s work and Validation Therapy were inspiring discoveries.
This year, I want to look beyond the condition itself and discover how we can engage, encourage, and empower loved ones and friends with Dementia.
I discovered the work of several people who are leveraging their skills and knowledge, not just to connect with Dementia sufferers, but to have fun, make memories, and enjoy the time altogether.
For those who’ve been following Carer Mentor: Empathy and Inspiration for a while, you know how much I value music. It’s part of my DNA. It’s been my therapy and a source of relief. It was also something that Dad and I could enjoy together, with or without words. It’s been amazing to see how music therapy and other creative endeavours are being employed.
Today’s offering:
Learn about The Brain Charity, which offers easy-access resources to engage with individuals affected by dementia or those living with a neurological condition.
Link to free YouTube videos designed to promote healthy exercises and speech therapy. These dance moves and songs are suitable for anyone to try.
The Brain Charity
The Brain Charity, a UK-based organisation. Here’s how they describe their work:
Each year, we provide practical help, emotional support, and social activities to thousands of people from all over the UK. We support anyone based in the UK who has a neurological condition, and their family, friends, and carers too.
Click here to find out more about the different services we offer.
Music Makes Us! is The Brain Charity's innovative music-based therapy for people living with dementia.
“Our online series combines physiotherapy through dance & speech and language therapy through singing.” The Brain Charity.
The online YouTube Playlist of videos:
👋🏻 There are 39 videos!
🎶, Music and karaoke.
🕺🏻 Physiotherapy through dance. These are exercises appropriate for different positions (sitting, supported standing, standing)
💡Clear health and well-being explanations
🗣️ Guided speech and language therapy
Two videos by The Brain Charity ‘Music Makes Us!’
Please remember to ‘❤️’ LIKE the article to guide others to these resources.
About the Brain Charity
The information below has been taken from The Brain Charity website
Why we’re needed
Our most precious memories, hidden dreams and the thousands of subtle differences that make us who we are, are all housed in one amazing, unique and fascinating place.
The human brain is the most complex structure in the universe, and the most important part of who we are. It runs our whole world, moves our body, makes our decisions and even tells us when to smile.
For someone newly diagnosed with a neurological condition, life may become very lonely and frightening. People can lose control of their lives and many face unemployment, poverty and social isolation.
At The Brain Charity, we champion neurodiversity and help anyone affected by a neurological condition to rebuild their lives and achieve their potential.
Currently, about 40% of our staff members have a neurological condition or are neurodivergent. It is really important to us that the lived experience of our client group is reflected in our employee team.
What we do
There are more than 600 different conditions affecting the brain, spinal cord or nervous system. These are called neurological conditions.
A neurological condition is any condition that affects the brain, spinal cord or nervous system.
Many are well-known, such as stroke, dementia, cluster headaches and ADHD.
There are also hundreds of conditions that only affect an unlucky few, such as trigeminal neuralgia, Alice in Wonderland syndrome and Huntington’s disease.
Some neurological conditions can begin suddenly, such as brain injury. Some you are born with, such as epilepsy. Others, like multiple sclerosis, can develop over time.
The Brain Charity is the only charity in the UK to be here for every single one of them.
Please remember to ‘❤️’ LIKE the article to guide others to these resources.
Thank you for this post. Dementia runs deep in my bloodline—three generations of men in my family have faded from view: my great-grandfather, my grandfather, and my father. But I refuse to go quietly into that dark night.
Three generations lost to silence.
So I picked up a pen—and started swinging.
They forgot.
I won’t.
I can’t prove it with science, but I believe it with everything in me: writing is my sword. It’s been both rebellion and release—especially as I write my memoir about growing up wild and full-speed stupid in a town that no longer exists.
Thank you for keeping this conversation alive. Every voice matters.
Sounds like a beautiful and much needed organization. Thank you for always sharing your knowledge and resources!