It simply isn’t fair.

It’s been a busy week, dementia-wise. Two Dementia Friends awareness sessions, an Alzheimer’s Society Memory Walk, the Coventry and Warwickshire Partnership NHS Trust AGM (trips off the tongue doesn’t it) and – most importantly – a morning with Mum.

The Memory Walk was, as always, a sobering and uplifting experience. Watching people proudly  sporting the names of loved ones who have lived with or are living with dementia on their t-shirts can bring a tear to the eye. So many people, so many stories, each one unique. I told Mum all about it when I visited on Monday. I’m not sure how much, if any of it, made sense to her. In previous years, she’d have been as keen as walker as any of the thousand or so who made their way round Cannock Chase last Sunday. Though not one to stand on a soap box, Mum worked tirelessly for things she believed in, whether it was delivering meals on wheels or raising awareness of issues under the radar. I remember her once lecturing me about prostate cancer in the days when very little was spoken about it.

“You must check yourself out. Have a feel,” she insisted.

“Do you mind if I finish my cup of tea first Mum?”

I became a member of the Coventry and Warwickshire Partnership NHS Trust a couple of years ago but yesterday was the first time I’d attended its annual general meeting. The Trust provides mental health, learning disability and community health services to Coventry and Warwickshire. I spoke to the chief executive Rachel Newson and to people directly involved with dementia care, all passionate about making a difference. But, and this is a big but, the model doesn’t work. In the limited time available for questions from members of the public, two dementia activists – one from Rugby, the other from Alcester – talked about failures at local level. The lady from Alcester spoke movingly about the Dementia Cafe she helps to run (on a voluntary basis, of course), about how that is the only consistent service available to people affected by dementia in Alcester. Stories of diagnoses followed by silence are, sadly, still common place. And just plain unacceptable.

The NHS aren’t solely to blame for this. The funding of dementia care comes from three sources – the NHS, local authorities’ social care budgets and the voluntary sector. I fact there’s a fourth because so much care is unpaid by family members. I make no apology for repeating the recent findings of an Alzheimer’s Society report which stated that the NHS contribute £4.3billion to dementia diagnosis and treatment and local authorities £4.5bn. If family members were paid for the dementia care they give for free at the moment, the cost to all of us would be £11.6bn. In other words, more than half of the dementia care in the UK is provided for free. And, by the way, the cost to the individuals and families who provide this unpaid care is £5.8billion. And that’s just the financial cost. The emotional price is far higher.

And we all know that the cost will rise as the number of people diagnosed with dementia increases. On current trends, it’s likely that there will be two million by 2051, more than double the current figure. And that number excludes people who are waiting for a diagnosis.

So please forgive me if, unlike Mum, I’ve climbed aboard this particular box of soap. The figures don’t add up.

The fragmentation of dementia care is unfair and relies far too much on people who don’t have a real voice in this debate. Yet.


About duncancajones

I am a coach and mentor, a charity trustee and a journalist. Thanks for taking the time to visit my blog.
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