Living with dementia: the right to good design

Living with dementia: the right to good design

Why are design and the environment of such importance to people who are living with dementia?

This question takes us back to three core principles:

The first is that the experience of living with dementia can only be understood within the social model of disability. That is to say that, while the clinical symptoms of dementias can have a big impact on the way we function in the world, society and the world itself also throw up many barriers. The social model teaches us that by removing these obstacles – whether they are physical or attitudinal –  we can make the world an easier place, not just for people with dementia in fact, but for all of us to live in.

The second principle is that good design is fundamentally about inclusion and accessibility – and accessibility is a human right, as enshrined in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and also the Equality Act. Dementia is a disability under the definitions of these instruments – and accessibility is covered in many of the UNCRPD Articles, including Article 9, Article 19 and Article 20. However, we know that people with dementia are expected to function in environments which are overwhelming and oppressive for them – and that, when they don’t and can’t, this is seen as due to the dementia rather than to the environment. And it’s not just about buildings – many people with dementia find information inaccessible e.g. too complex or only online, and this again excludes them from their human right to be part of society. These clear examples of discrimination contravene their human rights.

And the third principle is that of co-production with people with dementia. Over many decades we have been guilty of carrying out research, or designing environments, policies, and practice, without proper involvement (or sometimes any involvement) of the people most affected. This is now changing – indeed people with dementia are starting to insist that it does so. And they are rightly pointing out that their expertise, gained from the day-in-day-out lived experience of dementia, must be respected and used in partnership with the technical/ professional expertise of ‘design experts’.

My talk at the Environment and Design for Dementia conference on 29 Nov 2018, hosted by Salford Professional Development, will flesh out these principles, and will draw on a range of audio testimonies about the environment from our ground-breaking Dementia Diaries project. We can learn much from such testimonies. For example, that some people prefer (and indeed find it much easier) to live alone. That noise is a huge issue for many. That simple home-made adaptations can be just as effective as ‘trendy’ expensive ones.  That people with dementia can and often do come up with their own solutions – they may just need a bit of help with the practicalities of putting them in place. And that the design of contemporary systems – such as transport, benefits applications, online booking, and call centres – can serve to exclude or include them from society.

It’s also obvious that most of our buildings are not new and can never be ‘state of the art’. However, that doesn’t mean that we can’t ‘tweak’ the design to make it more accessible. One of the most effective ways of assessing the strengths and weaknesses of an existing environment is to do a ‘walking audit’ with a group of people with dementia. This always throws up many issues that those of us who are not living with dementia have simply overlooked. Of course, half a dozen people will all have different perspectives – and they cannot be representative. So their observations and reflections are best supported by the use of the two checklists (for inside and outside spaces) which have been co-produced with groups in the DEEP network – and which also bring in research evidence from such experts as Prof Mary Marshall.

So what’s my key message? It’s that good design must recognise the human right to accessibility and the social model of disability; it must follow the ideas of people with dementia (not lead them); it must simplify not confuse… and above all, it must have as its ultimate aim the breaking down of societal barriers to exclusion.

By Philly Hare, Director, Innovations in Dementia.

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