Like the best-selling author Wendy Mitchell, I’m not a great believer in awareness weeks, whatever they’re for. Those with dementia live it every minute of every day of every week of every month of every year, not one week of the year. Yes, focussed weeks provide a platform, a reason to write and talk about a topic, but I’d rather use my words for something more concrete, not a nebulous concept.
However, this week I’ve been given pause for thought because so many pieces on dementia (many of them a direct result of Dementia Action Week or #DAW) have caught my attention.
First up was an item on Radio 4’s Today programme (42mins in) which reported that for the first time ever a person with dementia had given live evidence to Parliament’s Select Committee on Health and Social Care. A red letter day indeed.
John O’Doherty has vascular dementia. During a session held to consider how best those with dementia and their carers should be supported, he told the cross-party committee that he had gone from a job in the finance department of his local authority, responsible for hundreds of thousands of pounds, to being unable to pick out the right money to pay for his shopping.
“It got to the stage where I’d changed from the person to go to, to the person to avoid,” said John.
Jonathan Freeman, whose mother had dementia, described years of bureaucracy and delay as the authorities refused to help with the soaring costs of her care. Even after an assessor agreed that she qualified for help with care costs, a review panel – who had never met Jonathan’s mum and hadn’t participated in the assessment – decided that she didn’t qualify.
Paul Bristow MP wondered if the system was geared not towards granting Mr Freeman’s mother the support she needed but towards finding reasons not to give that support. Mr Freeman agreed.
“It was very, very clear to me that any possible excuse not to provide mum with the financial support that was her right, was used,” he said.
Hearing his words brought back the anger, frustration and grief I’d experienced as I battled for years to gain support for both my mum, with her dementia, and my dad whose strokes left him needing two live-in carers. I wrote about my travails in the national press and on Radio 4 I said I agreed with Andrew Dilnot’s proposals for a cap on the maximum amount that an individual is forced to pay for his or her care to avoid the unlucky few (such as my mum and dad) facing catastrophic costs of over £100,000.
That was in 2011. Ten years on and nothing much has changed. Which is a scandal.
But some things have changed in the last decade, not least those with dementia being asked to give live evidence to a parliamentary committee.
The number of excellent, often award-winning films and plays centred around dementia, and tv shows with dementia plotlines, has risen swiftly. This is the soft power of culture at work, not only raising awareness but educating people and busting some of the myths that linger around this misunderstood and feared condition.
On Thursday my neighbour’s 21-year-old daughter came to talk to me about her post-graduate radio assignment. Her chosen topic, dementia: not least because it was Dementia Action Week. So there’s a quick win. We chatted for almost an hour and her knowledge of the condition and empathy towards those unlucky enough to live with it were very impressive.
Finally, I can’t let the week pass without a mention of one of my favourite people. Wendy Mitchell’s powerful blog, Which Me Am I Today, never fails to wow me. Her views are as incisive as only those of someone with dementia can be – and her witty writing is superlative.
She kicked off on Monday with a blog entitled, “We believed we could … and we did!” Which just about sums up her own take on life. In it she describes how the community interest company Innovations in Dementia was awarded National Lottery funds to set up Dementia Enquirers, a new approach to research that is led and controlled by people living with dementia.
The cartoonist Tony Husband (a fantastic – and fantastically talented – man with the unique distinction of appearing on my Well I Know Now podcast twice) came up with an image for the Enquirers. Which, as Wendy says, illustrates that “leading” the research doesn’t necessarily mean being behind the wheel.
As Wendy explains in her blog:
“Every component of a car helps you get from A to B. Someone may be the headlights, coming up with the direction, the ideas we take, others the wheels making sure it happens, down to the nuts and bolts holding it all together – every component vital.”
“Even the professional lead researchers delegate work to be done by others and we were no different.”
“The difference in our research was that WE chose the subjects that WE thought were important. WE decided how to go about it. WE invited others through our door to support and help”.
How totally brilliant. And (I believe, though correct me if I’m wrong) how very different from a decade ago.
Here are some of the projects that the Enquirers … well … enquired into: Thred, Liverpool considered how urban and rural transport systems could people diagnosed with dementia live independently for longer; Minds and Voices, York looked into the pros, cons and particular needs of those living alone with dementia, and those living with a care partner; the Beth Johnson Foundation, Stoke on Trent delved into whether class, ethnicity or intellect affected the dementia pathway. There were many more.
Despite the challenges thrown down by Covid, the Enquirers met via Zoom to launch the findings of their two years of hard work. Wendy, in ways that are far beyond me, managed to embed into her blog the interactive scrolling report of her own Minds and Voices group in York. I can only look on in awe at the achievements of Wendy and her peers.
Wendy – being Wendy – blogged every day of #DAW and Thursday’s was another example of how things have changed for the better in the last few years. She related a visit from Laura Williams, Dementia Project Coordinator at Yorkshire Ambulance Service NHS Trust, who had earlier spoken to the Minds and Voices group to find out about them and see how the ambulance service could help people with dementia.
The pair of them were filmed as Laura asked Wendy pre-prepared questions such as: what were the early signs that led to your diagnosis, why is it so important to see the person not the dementia, what do Yorkshire Ambulance need to be mindful of when treating a person living with dementia, why are carers are so important, and what it is like to live with dementia. And, as ever when Wendy’s involved, there is a lovely, smiley picture of them both to illustrate the piece.
So, having headed into Dementia Action Week with my usual scepticism, I’ve ended it more hopeful and upbeat about life. Which, I have to say, is very often how my dementia work – whether blogging, speaking or podcasting – affects me. Which must say something very special about the people I meet.