I dontwanttobehere-ness (or brains on toast)

If this annoys you…Good!

(‘Cos I want things to change.)

I have avoided attending activity groups. They’re not my thing.

When I am told that there is lots of support around the place for people living with dementia I ask “Really? Where?” and I’m usually told about the groups that are run by Alzheimers or the memory service, or others.

I mean, I really want to go and sit with other people with more advanced dementia and look at books and sing old songs, don’t I?

Dementia cafes, memory cafes, forget me not cafes, diamond cafes…I wonder what the next new name will be? Brain cafes? Serving brains on toast.

So the other day I found out that a new memory cafe was starting in our local community space cum library. I thought I ought to pop in and see what went on, show support, and I know the person leading it.

So two days ago I dropped in about quarter of an hour after the start time. First mistake. It’s a sequence of activities and discussion starting at the starting time. Not a drop in and out cafe.

There were about six or seven volunteers sitting around a table laden with biscuits, and probably four people living with dementia or cognitive impairment. Plus partners.


The lovely lady running the session (and she really is a lovely person) was holding one of those large picture books that encourage reminiscence and discussion. Big pictures, big print.

So, have you ever picked and pressed flowers? Do you know the names of any of these?

Card games. Which of these have you played? Followed by various tales of poker in the army, and three card brag in the fenlands.


Now I’m not against this sort of thing per se. But, for me, I find it intensely demeaning. It makes me feel like I’m a baby again. Patronised. (And H, you’re really not patronising…it’s just me.)

We sit and look at each other and try to find something to say which is the right sort of thing to say. The others are older than me, have different memories, come from different backgrounds. And I just keep quiet.

I don’t know them. Why would I want to share personal things with them?

So then after half an hour of this we get to the singing show.

One lady disappears. I wonder if I should too.

We talk about families in the 40s and 50s singing together round a piano.


Yes, I know, many did this. But I didn’t. And I don’t want to now. In front of strangers.

And I don’t want to sing the old songs…down by the riverside…doe, a deer…

While shaking percussion eggs. Trying to hear whether my voice is in tune while trying to shake a rhythm. And read the words…

I can do it. But do I want to? Do I enjoy it? No I flippin well don’t.

And at the end of two hours (thankfully shortened by my late arrival) I skulk away.

I’ve imploded with embarrassment, terror, and idontwanttobehere-ness.

These groups suit some. But not many.

Let me suggest why they are run and celebrated, and pretty much the only sort of organised support groups around.

There’s no cure for dementia. But we know that being active and engaged socially helps keep your brain working, pathways active, memories (some at least) accessible.

So what shall we do for these poor people suffering with dementia?

Oh, I know, we’ll put on activities that keep their brains going. We’ll get them to talk to each other. We’ll get them to sing. They’ll enjoy that. We might paint some pictures that magically colour themselves.

All with the very best of intentions.

Who are the organisers? People living with dementia?


It’s people who haven’t asked what we want, just made an assumption. And then done it to us.

I’ll tell you what we want.

A bit if fun? And laughter. And gently ribbing each other.

A walk on the wild side.


A nice coffee and a cake in a nice cafe, or a pub lunch.

Not a village hall or a library.

You go to an established DEEP group and you’ll get all this.

You’ll find people who are relaxed, cheerful, enjoying a chance to feel free of family burdens and guilt, able to say whatever they want.

And you’ll find people who get involved in improving care and services for people living with dementia. People who get a new sense of doing something worthwhile, feeling valuable.

Now I know full well that we’re all at different stages. But ask us before you create these activity groups. And ask us while we’re still able to tell you. I can tell you now what I don’t want to do when I’m unable to have a conversation. I can tell you what I will want to do too.

It comes back to that question…

What matters to me?

Not to you.

Nor what you imagine I might want.

Ask me. Ask us. Talk to us.


And, yes, we may need a little support or facilitation to get started, sometimes a little money for a day trip out, or visit to a film or theatre.

But it really isn’t complicated. We are not risk averse, so please don’t be on our behalf.

We need to live and feel. And have fun. And not be coddled through a picture book.

Those who provide these groups…don’t be offended. But you may be doing the wrong things for the right reasons.

Ask us. Then help us to do what matters to us.