July, who was a homemaker and teacher, holds a photograph of her younger self
Andrews is sceptical of the Hogeweyk’s “lifestyles” approach but says her own parents – a bus driver and a secretary – would never have been comfortable in a posh care home. “Having something that fits with what somebody is comfortable with is really important,” she admits. But how would you categorise people in the UK, or find the volunteers the Hogeweyk relies on? “The bottom line is, who is going to be able to afford your model if it can only work with an army of volunteers? In the UK, hundreds of care homes are having to shut down because their buildings are not the right quality and they can’t get the right staff.”
But New Zealand and Australia have similar villages, and the first to be modelled directly on the Hogeweyk is likely to open in the UK later this year, in east Kent. Henry Quinn and Dr Phil Brighton, from East Kent Hospitals Foundation NHS Trust, tell me they were profoundly moved when they visited the Hogeweyk in 2015. “What struck me most was when they said, ‘The most important things are the front doors.’ If you have a front door and it’s raining, you can go out and get wet,” Brighton says.
Quinn went up on to the roof of Buckland hospital in Dover and spotted six semi-detached blocks of derelict houses. They got funding from Europe and are on track to open soon.
“It’s a gated community,” Brighton explains. “There will be a boundary fence but not obtrusive or oppressive.” There will be a hub where locals and residents with dementia can go for entertainment, as well as a cafe and a gym. The houses will have five bedrooms each and no locked doors. The team are exploring ideas with the local community, including keeping goats and forging links with a primary school, bringing children in for activities.
If we let them, people with dementia take buses to the end of the line. One man, used to global travel, evaded his carer, travelled to the airport and hopped on a plane to the country where he grew up. People in residential homes used to be restrained, tied to chairs. That doesn’t happen any more. In the dementia-friendly communities the Alzheimer’s Society promotes, technology might allow more wandering. There are already GPS devices, informing relatives of people’s whereabouts – whether they want it or not.
And that is the hardest part: knowing what someone wants. We make decisions for those with dementia in the hope of protecting them. Sometimes, when you hear of a woman, such as a friend’s mother, rocking in her seat, whispering, “Help me, help me”, you have to wonder if we have got it right.
My mum hates locked doors. When she lived in her flat, there wasn’t a day when she didn’t potter to the local shop or get the bus to town. It saddens me to see her wanderings reduced to a corridor and now, even though she is in a safe place with wonderful carers, she is starting to fall; last time I visited, I found her with bruises in another resident’s room, as she frequently is. And for the first time, I did not get the sense that she knew who I was.
For Spiering, caring for people with dementia is all about calculated risk – “accepting frailty and that, in nursing homes, people are going to have falls, and are going to die, and we can’t prevent that. But we can add quality of life. And it’s not by locking them up and not seeing them as human any more.”
My mother is well looked after, by people who see her as human and lovable – but I am disturbed by her constant desire to leave. I want her to be safe, but even more than that, I don’t want her to be unhappy. Most of all, I want her to live the life she wants, in the little time she has left. And it hurts that she can’t tell me – even if she knows – what that is.
• All the people photographed and interviewed either live or spend time at villages run by Belong, a charitable UK organisation that provides care, housing and support for people with dementia.
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