Family dementia carers are reaching crisis point, often struggling alone and unsure where to turn. Two chance encounters strengthened my belief that fixing dementia care requires more than additional funding — we need to rethink the system itself.
Greg’s plea: when dementia carers struggle in silence
The end of a long day writing, but just before closing down for the night I needed to check my messages. Anything urgent I needed to respond to? Email? And just in case, Facebook?
That’s where I saw Greg’s plea for help, right at the top of my feed.
“Don’t know if FB is the right place for this, but I just wanted to say something about the struggles I’ve been having with Annie and her memory problems. It’s getting so hard and I don’t know what to do.”
There were a couple of care emojis and one ‘like’. A comment too.
“Sorry to hear this Greg. Anything I can do?”
I don’t know Greg well. In fact we’ve never spoken face to face. But we’ve been Facebook friends for years, after we both competed in a couple of road races together. Most of Greg’s Facebook posts are fond memories of his exploits as a younger runner. Never anything like this. And I’ve never seen any reference to Annie? Is that his wife? Probably.
I knew I had to respond. Who better than me to help and advise Greg? I’d spent all those years caring for Lena single-handedly, even before her formal diagnosis of early-onset Alzheimer’s in 2013 right up until her death 18 months ago. I know exactly how it feels when your life-partner slowly begins to fade away in front of you, when the words ‘Love you’ start to take on a completely different meaning.
I started to compose an answer. Not in Facebook directly, because I needed to choose my words carefully. Not pressing too hard — I remembered how I’d rejected offers of help in the early days after Lena’s diagnosis, angrily resisting dementia’s implication that we’d suddenly become old. Offering something practical, not just tea and sympathy.
“Greg, so sorry to hear that. I’d be happy to share with you some of the things I learnt while caring for my wife at home for years, after she was diagnosed with Alzheimer’s. I’m writing about it on my website now – short stories showing how love and hope can continue even after this awful illness strikes. Let me know if you’d like me to send you a link. And, by the way, running helps! 😊”
There! Not too long. Not too pushy. And I was happy with that lighter touch at the end. So now back to Facebook to post.
But Greg’s message was gone. All I saw was this note:
“The post or object that you were commenting on has been removed by its owner and can no longer been commented on.”
So he’d taken his post down. I understood exactly how Greg felt. I wrote about it in one of my stories, Coming Out:
“I’d been thinking for a while that I should say something – make an official announcement of some kind. But how could I, without betraying Lena? In her own mind, she was absolutely fine, everything was normal. She’d have been mortified if I told the world she had Alzheimer’s. She got mad when I even mentioned the word. So I kept Lena’s secret for around 18 months after her diagnosis.”
I could have sent Greg a private note on Messenger, but I didn’t. Perhaps, I reasoned, the time wasn’t yet right for Greg and Annie.
***
Wayne’s plea: the loneliness of family dementia care
It was the day after Greg’s retracted Facebook post, and I was working at the theatre. After losing Lena, I knew I needed to re-engage with the community. What better way than to join 300 other volunteers at the theatre, helping out a few nights a month.
Tonight I was working on doors alongside Wayne, who I was meeting for the first time. Waiting with our ticket scanners for the audience to arrive and the doors to open, we introduced ourselves to each other, as you do, and started chatting. Early in the conversation Wayne mentioned that his mother had always loved coming to the theatre but now she never came because she had … and he hesitated … ‘memory problems’.
My ears pricked up. Was he signalling dementia? Should I tell Wayne about my dementia care stories? Might they help him? No, I decided. I couldn’t just presume without getting to know him better. I sidestepped and asked a neutral question.
— So what do you do, Wayne? When you’re not here, I mean.
— I’m not working at the moment. Since my mum started having problems, I need to be at home with her.
— She can’t cope by herself then?
— No, not really. She …
He paused, looked down, avoiding my eyes. I gave him a prompt.
— So what did you do before?
— I was in finance. Well, accounts really. I can’t say I miss it actually. I hated it, to be honest.
— But don’t you miss being around other people, the people you worked with?
— Yes, I do miss that. Thank God for this job, volunteering here occasionally, although not so often now. You don’t get to meet a lot of people when you’re taking care of your mum. Yes, it gets lonely sometimes. And it’s difficult knowing how to keep her happy all day. Sometimes I wonder whether I’m doing everything right. I wish …
He was interrupted by the PA announcement:
“Good evening, ladies and gentlemen, and welcome to tonight’s show, which will be starting in twenty minutes. The doors are now open, so please have your tickets ready to show as you proceed to your seats.”
And with that, Wayne and I were off to our respective doors. The moment had passed. And since then, we haven’t bumped into each other again.
* * *
Everyone’s plea: why dementia carers need more support
First Greg, then Wayne, a day apart. It might seem like two chance encounters. They weren’t. According to a 2025 report from the Care Quality Commission, people in the UK now have a 1 in 2 likelihood of developing dementia or becoming an unpaid family carer in their lifetime. In this country right now, there are around 1 million family dementia carers each fighting the same battle in support of their loved ones.
When people need to defend themselves against a common enemy, it’s normal for an army to be formed, with leadership, organisation, a strategy, training, equipment, comradeship. But that’s not how it works in our dementia battle. Instead family carers like Greg and Wayne find themselves billeted in their own homes, each one of them fighting their own lonely battle. There’s no common leadership, no coordinated structure, no systematic training. Support? For many, outside support may amount to little more than a visit once or twice a day from an overstretched, time-constrained care professional — a domiciliary care worker — to assist with personal care and medication. Leaving the unpaid carer to deal with the remaining 23 hours of the day.
It’s no surprise that this system of dementia care isn’t working. Recent research from Dementia Carers Count claims that 4 out of 5 family carers in the UK have reached crisis point at least once; for 1 in 5 it’s often. This quotation on their website typifies the problem:
“I had a crisis in the summer, I couldn’t stop crying. I was caring 24/7 unsupported for 6 years and couldn’t go outside as I couldn’t leave my husband.”
The longer-term consequences? For too many it’s carer burnout, affecting their own health and ultimately their ability to continue as carers. Leading to that heartbreaking (as well as potentially costly) decision — to move their loved one into permanent residential care.
Have Greg and Wayne reached that point yet? Probably not, but the signs are ominous.
* * *
My plea: why more money is not enough to fix dementia care
I welcome the leadership of our new Prime Minister, Andy Burnham, who’s made it very clear that dementia care reform is high on his agenda. He has spoken movingly of his own family’s struggles after his father’s recent death from dementia. He has pledged to ‘spend a lot of political capital’ on fixing social care and talks of establishing a National Care Service, providing free personal care for older people according to need. But ever since that announcement, all I keep hearing from political commentators and politicians (though not Burnham, to be fair) are these two questions:
Where’s the money going to come from?
How much will the taxpayer have to pay?
Their assumption seems to be that money — if we could just find it down the back of some convenient political sofa — will be the answer. But as we’ve seen from Greg and Wayne and all the other evidence, our current system of dementia care isn’t just underfunded. It’s no longer fit for purpose. It’s broken. And you don’t fix holes in a bucket by pouring in more water. A better fix would be a better bucket.
With that in mind, let’s ask three different questions as we build our National Care Service:
If we redesigned dementia care from scratch, starting with the real needs and desires of people with dementia and their unpaid family carers, what would the system look like?
How much money would the new system save?
What other benefits would the new system bring to the nation?
These are questions I thought about a great deal in my years caring for Lena, and then nursing her through her final years. What would have helped us? What will help Greg and Wayne and the millions of other unpaid dementia carers now and in the future. The questions led me to develop a model that I believe could provide a blueprint for a National Care Service. I call it The Care Combine, and I’ll go on to describe the plan in detail in the coming series of articles.
But briefly now, I’ll describe what this new dementia system aims to achieve.
* * *
Re-imagining dementia care: key Care Combine objectives
The Care Combine has four primary aims:
- To enable people with dementia to live at home for as long as possible, engaged in meaningful and purposeful activities within their local community.
- To free family dementia carers from their care responsibilities for several days a week, allowing them to claim back their lives — resuming work, pursuing interests, meeting friends. The key word is freedom; it’s more than respite.
- To give family dementia carers ongoing training, advice, emotional support, and companionship to strengthen them in their battle.
- To provide these services free of charge to people with dementia and their families without requiring increased taxation or cuts in other Government budgets.
With the system in place, the wider benefits could be considerable:
- Delaying the need to move into full-time residential care, thereby reducing the emotional stress and the financial cost of dementia to families of people with the illness.
- Reducing the impact of dementia on the NHS by improving the physical and mental health of carers, and by freeing up hospital beds currently occupied by people with dementia.
I have an ambition too. By the end of this series, I hope to persuade those pessimistic political commentators that a National Care Service, far from increasing taxation, can actually help to stimulate economic growth. But that’s for the future.
In the next article in the series I’ll start getting into detail. We’re going back to school!
* * *
You’ll find several of my dementia care stories, including the one I refer to in the article, Coming Out, in the Marathon Years collection on my author website, Miles Posts.
