A Dementia-Friendly House – And Life

At the BRE Innovation Park

The dementia-friendly show-house was full of good ideas. The whole of the downstairs living space was open-plan with clear views from the lounge to the kitchen to the toilet: you’d always know where you were. Plenty of light everywhere, no shadowy corners, no confusing colours, nowhere you’d be likely to trip. There was space for a daybed, a carer’s room, and a lift for the time when the stairs get too difficult. 

The designers had thought hard about the details too. In the kitchen, food cupboards were clear-fronted, so you could immediately see what was inside; there were safety sensors in the danger areas. In the lounge, talking cushions reminded you when it was time to move – perhaps for a little ‘Acti-chair’  activity.

I was at the launch event for ‘Chris & Sally’s House’ on the BRE Innovation Park in Watford. The BRE (that’s the Building Research Establishment) had joined forces with Loughborough University and architects Halsall Lloyd to show how a typical Victorian terraced cottage could be re-shaped to meet the needs of someone with dementia.

In his opening address, Lord Best – chair of the All-Party Parliamentary Group on Housing and Care for Older People – made a powerful case for investment in dementia-friendly housing. The typical cost of care in a residential home is £30,000 per year.  There will soon be 1 million people in the UK living with dementia. If care-homes were the only option, the cost would be £30 billion a year. But most of those diagnosed would actually prefer to stay in their own homes (- 85% of them, according to a 2014 YouGov poll). So why not make it possible for them to do so for as long as possible? Why not incorporate these dementia-friendly design ideas into at least a proportion of the 300,000 new homes being built each year? Homes for older people who are ready to downsize – or, as Lord Best put it, to ‘rightsize’.

It all makes perfect economic sense. Rightsizing would free up existing housing stock, possibly stabilising house prices and making it easier for the next generation – with their young families – to buy a place of their own. Delaying the move to full-time residential care could save those diagnosed and their families £100,000 or more – and help fix the nation’s shortage of professional care workers.

I applaud the BRE’s initiative. Not everything I saw in the Watford house would help us – me and my wife. For example, even before her initial Alzheimers diagnosis, Lena was unable to cook – not even with the microwave, so none of the aids there would work for her (although the security sensors definitely would … more on that next time!) And even line-of-sight to the toilet probably wouldn’t stop accidents these days. But every experience of dementia is different, and others would certainly benefit. The BRE made it clear that this is an ongoing project: they’ll keep talking and testing, not only with their experts but directly with members of the dementia community. More applause.

But …

Dementia-friendly housing isn’t enough

Not by itself. Something vital is missing. ‘Vital’ in its root sense – essential to life.

The official designation for someone like Lena is ‘a person with dementia living in the community’.

It’s one of those euphemisms that we love. Like a ‘professional foul’. (He cheated.) Or ‘economical with the truth’. (He lied.)

Living in the community? Oh, they’re fine then. They’re at home with their friends, protected by their families, enjoying life … 

Except they’re not fine, most of them. They’re lonely. That’s what 68% of people with dementia reported in a 2016 study conducted by the Alzheimers Society.

If I’d been asked the question, that’s what I would have reported too, not as someone with the illness, but as a carer. Because dementia is the great isolator, slowly but surely cutting off your links with the community around you. You reach the point where you don’t work any more. The things that used to be fun – going out for a meal, to a show, clothes-shopping – get harder and harder. You stop seeing old friends: they’re not sure how they should react, what they should say. And seeing that personality change … well, it scares them.

So while our houses may be in the community, we are not. We spend most of our time stuck between the walls of our houses. That’s where dementia inflicts the real damage. With boredom. Wasted lives ebbing away. And that’s why dementia-friendly housing isn’t enough. We need dementia-friendly lives too.

Innovation in housing and care: a winning combination

I’ve painted a pretty gloomy picture of the social isolation and decline that comes with this heartless illness. But it’s not inevitable. Some view their diagnosis as a beginning not an end, establishing new relationships and interests within the dementia community. A few have achieved extraordinary things post-diagnosis. Like Wendy Mitchell, whose book is a Sunday Times best-seller; a few weeks back she read us an extract describing her first flight in a glider – then jokingly (I think) she told us that maybe she’ll try wing-walking next. Or like Kate Swaffer, whose long-running campaign for the voice of dementia to be heard has won international acclaim and recognition.

But for too many – the 68% – this is not the reality. It’s these people – the outsiders who stay inside, those diagnosed and their carers – that The Care Combine wants to reach with our new model of dementia care. Just as children go to school each day and adults go to work, we want people with dementia to go to The Bine. 

The Bine isn’t a place tucked away out of sight in some leafy residential suburb, but right in the heart of the community, the town centre. It’s a vibrant place, where there’s plenty happening. About 30 people in the building have dementia, but there are almost as many staff and volunteers who don’t. Some of the volunteers are carers who spend a couple of days here, but then get the rest of the week off, to work or pursue their own interests. Others are retirees who enjoy the project-work and activities at The Bine. A few younger folk are starting a career in care, students from the college.

There are visitors too. A group of mums are in for coffee and a chat to members, bringing their toddlers with them after dropping off the older kids at school. 

A group of the more active members and helpers are planning to go out later this morning and work on a neglected patch of wasteland nearby. They’re going to dig out the weeds and plant wildflowers there.

In the room next door, another group is just starting rehearsals for a performance they’re putting on next month – a singalong with all the favourite songs from when they were young, with all their family members invited. Today they’re going to finalise the song-list.

There’s a lot of talk these days about dementia-friendly communities. The focus is usually on what we can do for them, these people with the illness. The Care Combine is proposing a different approach. At The Bine, it’s not what we can do for them, but what we can do with them. Projects and activities that have meaning and purpose and value. Where there’s no segregation between dementia and the rest of the world. Just some people who need more help and some who need less. Some of those with mild dementia might even spend most of their time as helpers.

Back to the dementia house. In his press release Dr David Kelly, the Director of BRE Innovation Parks, said: ‘Our aim here is to show how homes can be adapted to better meet the needs of dementia sufferers and delay the need for care by the state for months or even years’.

I’d go further than Dr Kelly. With dementia-friendly housing and, alongside it, the innovation we’re proposing in care, I believe that people could stay in their homes and in the community – truthfully in the community now – for very much longer. The cost of dementia to the nation will be much reduced, partly because we have delayed the need for full-time care, but also because we have effectively mobilised, organised and trained our volunteer care workforce – giving them 5 days of freedom a week into the bargain.

Remember the name of Lord Best’s parliamentary group? Housing and care.  So let’s do it. Let’s innovate in both. And let’s all live a dementia-friendly life.