The Missing

Dementia is one of those invisible disabilities. You could walk past a dozen people a day with the illness, and never know. In fact, maybe you do, since 1 in 14 people over the age of 65 are affected.

But the likelihood is that you don’t actually encounter many people with dementia in your everyday life. Why not? Well, some of course are living in residential care, so they don’t get out much, if at all. But the majority – 500,000 of the UK’s 850,000 dementia population – continue to live in their own homes. ‘Living in the community’, that’s called officially. But while their houses are in the community, they’re not. Because they don’t get out much either.

Is that fact or supposition? Well, Alzheimer’s Research UK reports that 68% of people feel isolated following a diagnosis. And then I look at the evidence from the various dementia groups in Salford. There are plenty of them, and they’re reasonably well attended. But it’s the same fifty or so people we see every time in each of the groups – probably less than 5% of those living with dementia in the community. So where are all the others? How do they spend their time?

It’s a question I asked Vicky, the support officer we see every six months to check on how Lena’s doing with her medication, at our meeting this week. She mentioned in passing that she sees 200 people like Lena. I jumped on the opportunity for more information.

– So how many colleagues do you have, doing the same work here in Salford?

– There’s five of us.

– So that means you’re seeing about 1000 people with dementia, twice a year each?

– Something like that, yes.

– You know what I’ve often wondered? Why we see so few of them at the dementia groups here?

– I know.

We were on dangerous ground here – for Vicky. In her job, patient confidentiality is paramount. I knew she couldn’t volunteer too much information. Nevertheless, I pressed on, outlining my Bine ideas to her. A Centre open during working-hours seven days a week. People with dementia would go every day, and be engaged in meaningful, purposeful activities with plenty of help and support. Carers would get the day free for five days a week, and in return for volunteering at the Centre for two days, their partners would get free membership. The scheme would enable people to stay in their own homes, delaying the move to residential care – possibly for years. By marshalling, re-organising, training our army of unpaid family carers we’d reduce the cost of care and raise the quality.

– D’you think all this would appeal to the people you see? To their carers as well? Two days of care for them instead of seven?

– Some of them, yes.

– But not all of them?

Vicky considered, chose her words carefully.

– No, not all of them. Some of them are old. Some of them don’t enjoy the activities in dementia groups. And some of them just want to be left alone. They don’t want to leave the house.

– But what do they do all day?

– I don’t know.

Vicky’s right of course. The Bine won’t be for everyone. No product or service ever is.

But I can’t help wondering. Why do people want to be left alone? Is it because of the social stigma of dementia – that the word itself is so heavily loaded with connotations of madness, old age, terminal decline. What if we could change that perception – by getting Bine members involved in projects that actually benefited their communities, their neighbours, their families?

Are they fearful of a world that seems to have excluded them? Have they just accepted that they have no further role to play – their life is effectively over? Do they stay at home because their carers are exhausted? Do they just enjoy daytime TV?

Or do they really enjoy solitude? Have they gone missing because they and their carers are perfectly happy in their own company and genuinely don’t want to be found?