For people with dementia, loss of meaning and purpose is maybe even more important than loss of memory. It’s time for us to change that.

I’m sitting at my computer upstairs, concentrating, when Lena walks in. In her hand, there’s a dirty sock salvaged from the washing-basket in the kitchen downstairs. She stands in front of me, waiting for me to look up, not quite sure why she’s here. It’s the third time today she’s brought me something from the wash-basket.

If Lena was a child, I’d be getting mad by now, asking her why she kept taking things out of the basket, and to please take it back right now.

The problem is that Lena isn’t a child and she doesn’t know where ‘back’ is. Because Lena’s Alzheimers has advanced. And she doesn’t understand all this stuff about ‘keep doing something’ because in her world everything only happens once. Right now.

The one thing she does understand is tone of voice. If I show my annoyance — and I can’t help it … it’s natural, I often have — then she wanders away disappointed, or perhaps tells me she wants to go home now.

So I try, I really try, to be grateful.

— Is that a sock you brought me? I was wondering where it was. Where did you find it? Thank you.

And she beams at me. Because she knows she’s been helpful. Like she always has been. Life has meaning again.

The people we seek to serve through our project, The Care Combine, are like Lena, dementia patients who live in the community — in other words, not in a care-home but in their own homes, with a relative, or in an assisted-living facility. That’s the majority of those diagnosed, according to official figures. The UK government-funded health institute NICE reckons it’s around two-thirds of the dementia population — around 700,000 people. In the US, the percentage is higher, says Johns Hopkins Medicine: around 85% continue to live in the community. That’s around 5 million people. Large numbers.

Most of them will have much better cognition than Lena in the story I’ve just told you, but even so, once they’ve been diagnosed, they quickly begin to realise that the world has no use for them any more. If they’re still working, as many are, and word gets out, responsibilities will be taken away from them. Retirement won’t be far away. They’re told it’s too dangerous to drive now. Suddenly some of those simple everyday jobs at home don’t quite seem to make sense any more — setting the table, making a coffee, doing the washing-up. The person who’s caring for them steps in and takes over.

— Can I help?

— No, don’t worry. I’ll do it. Why don’t you watch TV or something? I’ll be with you in a minute.

Sometimes they rage against their diminished role. Why can’t they choose their own clothes, make their own food, go out to the shops alone? Eventually most come to accept. But what they never forget, somewhere in that tangled mind, is that they used to be useful, and life had a point.

One of the key objectives of the Care Combine project is to restore that sense of meaning and purpose to those living at home with dementia. How? Well, the first priority is to get them out of the house if they’re sitting there feeling lonely and useless. And where will they go? To a place we’re calling The Bine, located right in the heart of the community (— perhaps filling one of those empty spaces we see so often these days in our town centres).

What makes The Bine different from the daycare centres and dementia activity groups that we already have today?

1. The Bine will be open during working hours every day. Members (i.e. people with dementia) will go to The Bine just like our children go to school — for several hours most days, and not just for a couple of hours 2-3 times a week. This will give family carers the opportunity to return to work or study or just to have a break.
2. The Bine will have the feel of a social hub or an activity centre, not a dementia centre. In addition to the members, there will be people of all ages, backgrounds and interests. Let’s call them the helpers — who will include care professionals and lots of volunteers. (I’ll explain where the volunteers come from in the next post in this series.) For every three members, The Bine will always have at least one helper.
3. Why will we need so many helpers, a much higher proportion than we usually see in care homes or working with dementia groups? Because the helpers are absolutely required to lead, assist and participate in those meaningful, purposeful activities we’re talking about.

So how do we give an activity meaning and purpose? The key question is whether the activity has an outcome — whether something happens or changes as a result of the activity. The answer is always binary: Yes or No. (No Maybe‘s allowed.)

Let’s take singing as an example. Ask any expert in the field and they’ll tell you that singing is good for people with dementia. It’s a really popular activity in care-homes and dementia groups. And so it should be. If it makes you happy and you know it, I’ll always be the first to clap my hands. But imagine the excitement you could generate if a group of you, members and helpers (i.e. some diagnosed with dementia, others not, working together) formed a choir and planned to put on an event and invite their families, or maybe arranged to perform at a local school. That would be a typical meaningful Bine activity.

Another might be to get involved in volunteer community projects. In The Marathon Years later, I’ll be telling the story of the fun Lena had, even at a relatively late stage of dementia, when she and I joined in local litter-picks.

Or what about members and helpers combining to bake the cakes they serve and sell at their own Bine cafe to members of the public who drop by for a chat, perhaps mums on their way back from the school run in the morning?

In all these projects, some Bine members will be able to contribute a lot, others much less – and only then with a lot of help – but the project will still be theirs. They’ll be in the heart of the community, serving the community. People will say ‘Thank you’ and ‘You’re making a difference.’ Suddenly they’re helpful again.

And like Lena, they’ll beam.

Want to help?

As the Care Combine project develops, one of the key tasks for the central team will be to prepare materials to help those setting up Bine Centres, nationally and internationally. One of the most important publications will be an Activities Manual, with hundreds of suggestions for meaningful and purposeful community activities.

Perhaps you’re already volunteering on a local project that could be replicated by our Bine members and helpers. Or perhaps you can think of — or could maybe help us shape — other meaningful dementia activities? If so, I’d love to be flooded with your suggestions in the Comments Box below.

Or if you’d like to get even more involved, as a writer or editor on the Care Combine Activities Manual, then drop me a line — alan@milesposts.com. Although we’re still only at an early stage in the project, it’s not too soon to start talking about it.

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And finally check out this video, “ScrapLand” – a volunteering idea that’d be perfect for The Bine.