Living well…with dementia?

What did I learn yesterday?

I had a great day in London, working on the Alzheimer’s Society new vision with 50 like minded people.

I had eggs royale and coffee at St Katharine’s dock, in the sun, beside yachts, served by a lovely helpful young man.

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And, as ever, I learned lots, reflected, and altered my thinking.

That’s one of the great pleasures of going to conferences and workshops.

Ideas, challenge, discussion…

“Ideating”…a new word that was born in my world yesterday. (Though I hope it also dies soon.)

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Living well with dementia…what’s that all about?

I’ve wondered about this for some time, but I’ve stuck with it.

Living well with dementia is not the right description.

Yes, it is possible to live well, with or without dementia. To carry on living and doing the same things you did before. To go out and meet friends. To be active, walking, bowling, shopping, knitting, talking, hang gliding, climbing, singing, working…

But if you ask some one with dementia are you living well with dementia what’s their first thought?

Oh yeah, it’s great, having dementia. Cheers.

If you ask are you doing what makes you happy, and getting out of the house? Are you doing things you did before diagnosis?

Well, yes, sometimes.

Or, actually I’m doing more now, meeting more people, having more fun, cos I’m working with people I wouldn’t otherwise have met. (Thanks Chris for that one…it’s true for me too.)

There’s a huge difference between us all. We’re all different. And living well is entirely different for every one of us.

No one would welcome dementia. But it’s not necessarily going to define you.

So, are you living well? With or without dementia.

If you’re not, why not?

Are you lonely? Are you short of money? Are you depressed? Have you got disease which means you can’t walk as much as before?

I can hear you shouting…

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This is not a nanny state. Don’t tell me to be happy. Don’t tell me what I should or should not do.

But what’s the point of health and social care if it’s not to enable people to live, um, well?

Or is well too strong? Is just live what we mean? Just exist?

Keep our noses above the waterline so we don’t drown.

Trouble is, that isn’t living well. In fact, it isn’t living.

So let’s get away from living well with dementia.

Living well, full stop.

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Dementia is not, well, “well”.

Dementia is just a piece of shit that life has thrown at us and that we can’t yet do much about.

Just like cancer, it happens. And we live and die with it. Sooner or later.

So let us live well, and support others to do so too.

Everyone deserves to have a decent life. That’s fairness.

It’s not a life without disease.

It’s a life with choices, which we often get wrong.

It’s a life in which waking up to a new day is nice, not a drudge or a desperate search for food or clothing.

But please let’s get away from the absurd notion that it’s good to have dementia.

It’s almost as absurd as the idea that we can have a world with dementia.

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