I spent Tuesday morning with a bunch of young creative types in Birmingham. Their communications agency specialises in health care issues and is starting to work in the world of dementia. I never tire of trying to explain some of the issues which impact on the lives of people living with dementia and their carers. As has been said so often, it’s only by raising awareness that we can make a significant difference.
During my stream of consciousness, I was posed what seemed a simple question:
What does living well with dementia mean?
It’s a phrase I use regularly. It’s one of the key messages in a Dementia Friends awareness session but what does it actually mean? In 2009, it was the name of the Department of Health’s national dementia strategy. For the National Institute of Health and Care Excellent – NICE – it’s a “tailored resource for supporting people” to live well with dementia. And in 2011, it was the name of a Design Challenge, launched by the Design Council. The challenge produced five winners, some of which – like Dementia Dog – I’ve comes across and others Ode, a fragrance release system to stimulate appetite, I haven’t.
So, the phrase has common currency. But how often do we stop to think about the intention behind the words? I know what it means to my good friend Ken Howard whose energy to spread awareness of dementia remains undimmed. He is living proof that a diagnosis of dementia is no barrier to an active and fulfilling life. Others, like Norman McNamara, set similar shining examples too. Check out Norman’s Purple Angels – http://tdaa.co.uk/
There are countless examples of people living well with dementia, making a genuine difference. But as I drove from that meeting in Birmingham to Kidderminster for my weekly sing-song, I asked myself a simple question:
What does living well with dementia mean to Mum and her fellow residents?
For one elderly gentleman, a relatively recent arrival, it seems the answer might be watching the film of “The Bodyguard” on a loop. And when I approached the small sitting room on Tuesday, sure enough I could hear Whitney promising that she’d always love me while Kevin was putting the bad guys in their place. I should point out that the DVD isn’t used merely as a means of keeping this man quiet. He’s a fan, with a capital F. But it wasn’t the film’s number one Fan who was glued to the screen but Mum. She appeared to be paying rapt attention, so much so that I almost didn’t want to interrupt her.
“What are you watching Mum?”
“I don’t know.”
“Shall I switch off while we talk?”
“Yes. I don’t know what it is.”
And yet, Mum seemed very content, happy even. I can’t claim to understand what goes on inside her head these days. I find not really knowing a person I used to know so well one of the hardest parts of my second-hand experience of dementia. There was a time when Mum and I were on the same wavelength. Now we’re not even listening to the same radio. I wish I could ask her whether she’s living well or whether she’s putting on a brave face. What does she think of her life today? Maybe, with her memory apparently gone, she has nothing with which to compare it? It is what it is.
That’s the thing about dementia. It poses so many more questions than it answers. My sister – more adventurous than I – took Mum out in the car to see her in-laws on Monday. As we talked about it, Fi couldn’t be sure what Mum had made of her excursion. She had the impression she was a little unsettled by it. Needless to say, she had no recall of the trip when I mentioned it the following day.
So, is Mum living well with dementia? Five years after a diagnosis, is it possible to define what living well means? More bloody questions.
All I do know is that Mum seems content. Perhaps that contentment equates to living well. All I can do, all any of us can do, is hope it does.