Same Dementia, Different Story

Dementia volunteer

Dementia’s often pictured as an end-of-life illness. But people can live for years after diagnosis and still get out, stay involved, have fun. Would you have even known from this picture of people on a volunteer street-cleaning project, that one of them has dementia? It’s time to start telling a new dementia story.

 

Let me start with two contrasting stories that illustrate current perceptions. The first is called ‘People with cancer’, and I’ll let Google tell it. Just run a picture search on the story title. The second is called ‘People with dementia’. Run the same search.

What do we see?

Cancer is a story of young people, survivors. The pictures are full of smiles, because this is a story of optimism. Can we beat cancer? Yes we can!

Dementia is a story of old people, weary of life. The faces are mostly blank, unsmiling. They’re all seated, inactive. Is there hope? No. All we can give them is sympathy and care.

But that’s not my experience, after living with a partner who was diagnosed with Alzheimer’s five years ago. In our community, I’ve seen plenty of people with dementia who are still physically active and have a zest for life. I’ve seen them organising and hosting events, speaking on a public platform, learning to swim for the first time in their lives, even running a marathon. For my wife, Lena, the illness has taken a much tighter grip, and she struggles to communicate, can’t manage alone now with washing, dressing, eating. But even so, she constantly wants to stay involved and to help. Yesterday I was doing a job on a ladder, and she started climbing up behind me …

Alzheimer’s Society figures show that 55% of people living with dementia are in the mild stage, 32% in the moderate stage, and only 13% in the severe stage. But that’s not the story in the public imagination. The pervasive image is that dementia is a life-ending illness. That those diagnosed are incapable of helping themselves, have no further role to play in mainstream society. That we should feel sorry for them, try to help. But definitely not be one of them. That’s scary. They’re not the same sort of people as us.

Our current dementia care system is predicated upon this story we’ve been telling ourselves. We show our good intentions by making life as comfortable as possible for these poor folk as they shuffle their way towards death. We become dementia champions. We make our towns dementia-friendly – build a sensory garden or two for them. We arrange a weekly meeting so that they can listen to an informative talk and maybe play a few games. And for family caregivers who are struggling to manage, we provide an hour of home-care a day to help with basic needs – washing and dressing and cooking and medication.

People with dementia are the passive recipients of our care.

Official estimates are that the UK is spending over £23 billion a year on all this – the price of a small Brexit. And guess what? – it’s failing! How else do you explain the results of Alzheimer’s Society surveys? 68% of people feel isolated after a diagnosis of dementia. And 63.5% of their family caregivers say they had had no or not enough support.

So I mean to tell a new dementia story. In my story we won’t be talking about the end-of-life scenario. That’s been covered pretty well already. No more passivity, no more more receiving, no more isolation. This story will be about projects, groups of people – those with dementia assisted by their carers and plenty of helpers – undertaking meaningful activities serving their communities and their families and their friends. Like forming a choir and putting on concerts, or going carol singing. Like helping with local volunteer projects. Like creating a personal photo album as a gift to the family. Like creating a wildflower garden on that unsightly patch of wasteland – or maybe even planning and building their own sensory garden. Not useless any more, but in the thick of things. They’ll be smiling. There’ll be hope. Because they’re spending their days at The Bine, where daycare gets turned on its head.

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