Living with Dementia November 2008

Harold and Penny Spence are two people among hundreds of thousands living with dementia in this country. Like the majority of people affected by Alzheimer's disease and other dementias, they struggled to cope alone without support when Harold was diagnosed in September 2003, aged 64.

Penny, however, considers themselves fortunate in that Harold received a diagnosis early (it is estimated that only a third of people with any form of dementia actually get a formal diagnosis), were able to access Aricept, and that Harold is tolerant to the drug.

As with many families, they developed their own coping mechanisms as a way of dealing with the effects of dementia. For Harold and Penny, who live in Lincoln, this involves being very organised and finding ways to keep Harold occupied, which keeps him happy.

Penny says,

'Although we'd had a diagnosis of Alzheimer's, I wondered if by keeping Harold active we could stem the deterioration of the disease. I even wondered if Harold actually had Alzheimer's, as you can never be 100 per cent sure until post mortem.

'We decided to look at the things Harold can still do and concentrate on those. I'm very organised and I know that how we do things wouldn't work for everyone, but this is how we manage.'

Daily schedule
Harold and Penny have a weekly schedule from Monday to Sunday. Penny believes that structure helps to keep Harold stimulated and maintains some of his independence. The schedule is kept on the work surface in the kitchen.

Currently, on Mondays, Penny spends the day at home catching up on chores while a minibus collects Harold and takes him to the day centre. On Tuesdays, Penny goes to a Pilates class for an hour in the morning while Harold stays at home. In the afternoon, Penny takes him to choir practice and a volunteer from the local Adult Supports Adult Scheme collects him and they spend time together doing different things.

Penny works as a part-time receptionist from Wednesday to Friday and is very grateful for the support from her employers. On Wednesday afternoons, an alarm will remind Harold to go to the nearby Wednesday club. Penny says,

'I photocopied and enlarged the map and marked out the route so Harold knows the way. I'll get a call from the club if Harold doesn't turn up, but so far this is working fine.'

On Thursday afternoons, the volunteer from the Adults Support Adult scheme spends time with Harold again and a friend, Ron, collects him early evening and takes him to short mat carpet bowls. On Friday mornings, a minibus takes Harold to Alzheimer's Society's drop in centre and in the afternoon, Brian, a volunteer with the local council, picks him up and they go out for a walk.

On Saturdays Harold and Penny spend the day together, and on Sundays Harold attends another day centre.

Different reactions
Penny says,

'Each morning Harold will ask me, 'What's happening today?' He likes having things to look forward to and to keep busy. He doesn't worry about things; he just enjoys life and seems to accept he can just do what he can do and can't do everything. He's always been the sort of person who doesn't think too deeply about things.

'I seem to be the one who's finding it hard because everything as it was in our lives is finished. I'm 58 and I think if I was 70 I'd be more accepting of the situation, but I'm always thinking for two people and I'm exhausted most of the time.

'It feels like there's always a next step; something else to think about. First it was going to the day centre, then getting used to the day centre, then going more often, and now we're thinking about trying an overnight stay and maybe respite.

'There are things I miss, like having someone to discuss things with. We're having some decorating done at the moment and I might ask Harold what he thinks but it's not the same.'

Penny also misses the things they used to do together, such as caravanning and going dancing. But she believes things could be worse.

'I don't look forward too far as I would just be worried all the time. There has been more deterioration latterly and Harold relies on me more. But I have to learn to let go each time something is lost.

'I have wondered about giving up work, although working gives me a bit of respite. But that would lead to another form of stress as it would affect us financially. I do wonder what the next 18 months is going to bring. I feel if I'm not organising things I'm going to lose control of coping.'

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