What do you see?

Where are all the demented? Where are the crippled? Where are the sick, the decrepit, the tired and the dying?

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I went to Birmingham last week, to the Young Dementia Conference, organised by the excellent DEEP people.

Met the people who are becoming old friends, as in friends I’ve known for a while…not old.

Caught up on what we’re doing…north, south, east and west.

Affirmed, validated, discussed what we believe, and what we want to see happen.

But how curious.

I looked around. Most people were in their fifties and sixties.

There were lots of people living with dementia, many with carers/partners.

There were speakers, very articulate, well prepared, talking about their lives.

Prepared speeches, but not just reading them…

Ever increasing font sizes!

Yes, living with young onset dementia, but you’d not know if you met them.

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And that’s the point, isn’t it.

One said he was fed up with explaining to people that, yes, he did have dementia, justifying his diagnosis.

Yes, you might not see it, but it affects me.

I get this too. A GP said recently that my memory seemed pretty good, (the unsaid bit was do you really have dementia?). Others are surprised how articulate I am (most of the time).

Speakers told of their coping strategies.

Lining up flannel, toothbrush, tooth paste, soap, razor…on a shelf, and putting each away in a box after it’s been used so he knows he’s done everything.

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What you don’t see is the stumbling, loss of balance…

The occasional total disorientation when you haven’t a clue where you are, or why…

The loss of taste and smell…how bland the world becomes, how much I miss the scent of the flowers I grow.

The loss of words and names, the blankness when asked a question you’re not expecting, searching for possibilities, choices, rehearsing, testing, then being asked if you heard…or if you care…

Leaving the oven on all night, not being able to find the dog’s lead, or the mustard…

These are the unseen bits.

What do people expect to see?

Patients who limp, hobble, mutter, shuffle, can’t go out, or have a conversation…

Why?

I suppose because dementia is still thought of as a disease of old age, when other problems have developed.

You see the physical ailments, but not the diseased brain.

So if you’ve got dementia you’re dying.

Dementia is seen (and funded) as a mental illness.

It’s not.

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It’s the result of disease in the brain stopping cells and areas functioning properly.

Yes you may become depressed. Who wouldn’t?

Yes it is a terminal disease and should be recognised as such, to be taken seriously…like cancer.

And funded properly.

But because you can’t usually attribute death directly to dementia you can’t measure death rates. So you can’t set targets, time limits, and hold commissioners to account for spending money to achieve them.

Where’s the risk to commissioners? Why should they put more funding into dementia care? It’s just a bunch of old people stuck at home.

It’s not like younger people getting cancer, or diabetes, or having a stroke.

Or indeed older people getting cancer.
They get swamped with care, support, treatment.

So, next time you’re out and about, remember, we don’t go round with labels like walking sticks, and shrivelling skin. We just live as best we can.

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We’re out there, and from time to time we need support.

Not ignoring.

And for pity’s sake don’t tell someone with dementia that “you’d never have guessed.

“I keep losing my keys too, so I must be getting it too.

“Your memory’s very good for someone with dementia.

It hurts.

Instead, attend a dementia friends information session and find out more about living with dementia.

We’re not all crippled, decrepit and frail, though it may come one day.

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