Table of Contents:
Quote of the Day
Interesting Stories This Week
Why Clinical Trials Matter – and Why More People Should Know About Them
Responding to YOU!
Caring for our seniors is perhaps the greatest responsibility we have. Those who walked before us have given so much and made possible the life we all enjoy.
Interesting Stories This Week:
Young-onset dementia charity expands in Surrey
Football club dementia charity gets more funding
Care England echos CQC calls for a joined-up dementia care strategy
New film explores early-onset dementia and music
Why Clinical Trials Matter – and Why More People Should Know About Them
We recently came across an eye-opening article from Alzheimer’s Research UK that explored an important (and often overlooked) question:
What’s it actually like to take part in a dementia clinical trial?
For Marion, who was diagnosed with Alzheimer’s at the age of 69, the answer has been both personal and hopeful. After being told there were medications to help with symptoms, but nothing to slow the disease itself… Marion and her husband Geoff began researching clinical trials.
They’ve since taken part in three different drug trials, with Geoff supporting Marion as her study partner every step of the way. They’ve never missed an appointment.
Why? Because, in their words, “Even if it doesn’t help me, it might help someone else.”
That kind of selfless thinking is the quiet engine behind most progress in dementia research.
What does the clinical trial process involve?
It starts with a meeting with the Principal Investigator—the lead scientist in charge of the study. From there, participants undergo a series of assessments to ensure the treatment is safe and potentially effective.
And while each study varies, there are several clear benefits for participants:
A deeper understanding of your diagnosis
Regular contact with dementia experts
Ongoing health check-ups
Insights into risk factors and prevention
The chance to help future generations
For Marion and Geoff, being part of research gave them something else too: a sense of purpose. A feeling that they were helping to build a better future, not just for themselves, but for others walking the same road.
But here’s the shocking part…
Despite all this, only 1% of people who are eligible to take part in dementia clinical trials actually do.
That number needs to change.
If we want to move towards a world where dementia no longer carries the same fear and heartbreak, we need more people like Marion. More people are willing to get involved in research, not just for themselves, but for everyone still to come.
If you’re interested in learning more about taking part in a dementia clinical trial, visit Join Dementia Research, a national service that connects volunteers with relevant studies near them.
Let’s keep pushing forward. Together, we can turn hope into real change.
A Problem Shared is a Problem Halved
Every week, we hear powerful, honest, and deeply moving insights from caregivers like you- and we don’t want them to sit unseen.
This Week’s Caregiver Story-
"One of the hardest parts is getting her to let me help. I’m not with her 24/7, so I’m constantly worrying about what she’s doing- or what she might be forgetting to do. I just want to make sure she’s safe and looking after herself, especially when it comes to eating properly, but it’s really difficult when she resists my support."
Harvey says:
Thank you, this really captures the emotional strain so many carers face, but often struggle to put into words.
That feeling of not being there all the time can weigh so heavily on your mind. It’s completely natural to feel anxious when you’re not able to see what’s happening, especially when your instincts are telling you something might be going wrong.
And when the person you’re caring for resists your help, even when you know it’s coming from a place of love, that can feel incredibly frustrating, even heartbreaking.
Dementia can affect a person’s ability to judge risk, recognise they need help, or even accept support from someone they trust. For them, accepting help might feel like a loss of independence. For you, not being able to help feels like a loss of control.
You’re trying to protect her, support her, and keep her well, but there’s this emotional tug-of-war happening between your care and her autonomy. And that’s not easy to sit with.
If I can offer anything, it’s this: small shifts in how we offer support can sometimes help reduce resistance.
For example:
Instead of saying “Let me help you eat,” you might say, “Would you mind joining me for a bite to eat?”, framing it as a shared moment rather than a task.
Try offering two simple choices when possible, like “Would you like toast or cereal?”, to help her feel involved in the decision.
And when you’re not there, if possible, consider using visual prompts or gentle reminders (like notes or meal planners) to support her routine.
You’re showing up with love. And that matters more than anything.
Warmly,
Harvey
If something’s been on your heart lately, let us know. We read every word. Your voice could offer comfort to someone else navigating the same journey.