The aim of dementia friendly communities? A life more ordinary

One of a series of images for the Joseph Rowntree Foundation’s Dementia Friendly York programme by photographer Elly Ross

In her work on dementia, Qa Researcher Kay Silversides recognised a common theme running through the most successful projects.

This is one of a monthly series of blogs exploring what we have learned from our research into helping improve services for people with mental health problems, children, young people and families, and those in later life

For the past 10 months or so I have been working with Janet Dean (Dean Knight Partnership) and Janet Crampton (2020 Commissioning) on an evaluation of the work funded by Joseph Rowntree Foundation to develop York and Bradford into dementia friendly communities. The full evaluation reports from York and Bradford will be published by JRF in autumn 2015.

It seems that not a day goes by when dementia doesn’t get a mention in the news.

Whether it is the latest scientific theory about what causes the disease or Julianne Moore’s recent Oscar for the film Still Alice – dementia is high profile.

But, behind the media buzz there are some stark facts – there are 850,000 people in the UK with a diagnosis of dementia and this figure will be much higher if you include those who have not yet been diagnosed.

The topic of dementia can feel very big, but the beauty of the concept of dementia friendly communities is that they are all about small changes that can be made on your doorstep.

Life enhancing

If you are not already familiar with the term ‘dementia friendly communities’ essentially the aim is to promote ‘inclusion’ and ‘quality of life’ for people with dementia.

But what does this mean in practice? From our evaluation one of the clearest findings for me was that lots of the messages, campaigns and projects were about one thing – keeping life ordinary.

One of the people with dementia I spoke to talked about the fact that everything he did, all the ‘ordinary’ things he did post-diagnosis, had a ‘new sense of importance’.

It was clear from the evaluation that, within a dementia friendly community, a focus on maintaining the ‘ordinary’ can dramatically enhance quality of life and enable people with dementia to live independently for longer which has to be a clear selling point for those charged with looking after the NHS and Adult Social Care piggy banks.

So what is ordinary?

Julianne Moore plays a linguistics diagnosed with Alzheimer’s disease in the film Still Alice. Photograph courtesy of Oscar.go.com

There are many ways to define it…

• ordinary is about being able to do your own shopping because people at your local shop know about dementia and understand that you find it hard to tell one coin from another
• ordinary is about being able to play bowls every Thursday like you have always done because people know and understand that you might forget the rules from time to time
• ordinary is about being able to get a taxi home because the driver understands that you have dementia and sometimes forget which number you live at – not that you have had one glass of wine too many (even though you might have!)

Society is on a journey towards dementia friendly communities but we are not there yet – support for people with dementia to help maintain ordinary life is not as widespread as it needs to be.

We still need labels

There is a debate within the world of dementia friendly communities about whether organisations or activities should be labelled ‘dementia friendly’. The ideal is for people with dementia to go about their business seamlessly in society without the need for labels.

However, as we found in the evaluation, labels can serve a valuable purpose.

For people in the early stages of dementia, and their families and friends, it is really useful to know about the places they can go to where other people will understand, and to do that we need to stick a label on it.

Until we are at that point where we no longer need to use the term dementia friendly we need to do more to shout about services and organisations who are working hard to maintain the scaffolding of ordinary life for people with dementia.

It seems there are three things to remember:

1. If your organisation is working to be dementia friendly – be loud and proud
2. Link up with others doing the same – you will be louder this way
3. Keep at it.

And hopefully, one day, all of this will just seem ‘ordinary’.

Kay Silversides is a Research Manager at Qa Research: kay.silversides@qaresearch.co.uk