At this year’s Dementia Congress in Brighton I sat alone and listened to the Tom Kitwood Memorial address – a rare opportunity amidst a mighty presence and input by people with dementia via the DEEP network. I found myself reflecting on my 20 years working in the dementia field, being inspired by Kitwood’s work as a bright young thing in 1998 in my first ‘proper’ job, supporting long term, citizen advocates for people with dementia living in care homes in the London Borough of Greenwich. People who had no-one else in their lives to speak up for them and with them. Our volunteer advocates stood side by side with people, finding ways to collect and honour wishes, hopes and feelings, when verbal communication was impossible to articulate. Side by side at very difficult times of transition, following crisis and trauma. Side by side looking towards end of life and death.

Fast forward 20 years and I’m still working in dementia. I can’t imagine being anywhere else. At Dementia Congress people with dementia were front and centre stage, running as a golden thread, with family carers, throughout this conference. But, of course, these people are few in real terms, and the experiences of the remaining population of people with dementia are many. I recall my colleague Steve Milton, when leaving his 8 years of running the Alzheimer’s Society’s dementia helpline, reflecting with huge sadness, that while he’d personally spoken with some 30,000 people affected by dementia, in real terms the numbers, especially of people with a diagnosis of dementia were pitifully small  – “what about the rest” he asked?

But the danger of focusing on the hugeness of the task just paralyses us.  Similarly,  dismissing activists with dementia as ‘unrepresentative’ does not help to bring the voices of people who are considered to have more advanced dementia to the forefront, nor does it recognise the ever steeper mountains they climb away from the spotlight. As Fran Hamilton, an Occupational Therapist and co-ordinator of the newly formed D-Mob group in Brighton reflected about the engagement of people with dementia: “There isn’t finite room, only an ever-expanding space for the voices of people living with dementia. This is how the landscape is changing and we get to end stigma.” DEEP is full of quieter voices, people who live in care settings, people who have had dementia for many years, people who have more advanced dementia, and are sustained by their families, their networks and their DEEP groups.

I’m so proud to see a network of and with people with dementia flourish and grow. DEEP isn’t the only network and it isn’t the only way of working. I don’t think anyone at Innovations in Dementia or within a DEEP group would say it is. But I’ve learnt such a lot from the hundreds of people with dementia I’ve worked with – echoes of their voices whisper to me at times of doubt, none louder than Lily, my grandma who, when living with advanced dementia in a care home addressed my 16 year old self to “never forget that I’m still in here.” With our recent Big Lottery funding we will be ‘capturing the story’ of DEEP groups for the next 18 months. Marking hundreds of moments in time and recording legacies with people with dementia.  It’s just a moment though. There is so much growth still to come. I’m honoured to have recently been nominated and accepted as a Fellow of the Royal Society of Arts– with its mission to enrich society through ideas and action. Innovations in Dementia is a tiny organisation of committed people. We can’t do this alone and have never claimed to do so. We want to inspire different conversations about dementia and hope you will join with us in constructive and respectful discussions. The space available for social change is infinite.

By Rachael Litherland, Director, Innovations in Dementia

Me and my Grandma.

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.

In the disability field, it is increasingly the case that people who use services, rather than professionals, have control over the research process. They plan and undertake research, and interpret the findings.

In the ‘dementia world’, DEEP – the UK Network of Dementia Voices which iD hosts – is growing rapidly and now comprises almost 100 involvement groups of people with dementia. We have realised for a while that DEEP provides the potential for a new approach to research delivery that is led bypeople with dementia.

Within DEEP people with dementia are already acting as researchers (even if not defining themselves as such) e.g. by: identifying research priorities, testing out methodologies to collect data,and analysing data to produce conclusions. One great example is the ‘Our Right to Get Out and About’ project which involved three Yorkshire DEEP groups (see photo). We’re keen to explore with DEEP how research knowledge is acquired and applied in a way that feels relevant to people’s own lives, rather than being purely driven by the academic research agenda. In other words, to develop an alternative research involvement framework.

So we are thrilled that the BIG Lottery Fund has awarded us over £700,000 to kickstart a ground-breaking new initiative, ‘Dementia Enquirers’.

The aim of the 3 ½ year project is to develop a new approach to research, or ‘enquiry’, that is led and controlled bypeople with dementia themselves.We will support groups to identify research priorities,and, helped by small grants,to plan and undertake their own research. The project will also explore with people with dementia the lessons that emerge from their work, and this learning will be widely shared. University researchers and others may be involved as advisors, or have specified roles within the projects.

Rachael and Philly will be co-leading this work. We are so proud to have been awarded the grant, and excited to be undertaking such ground-breaking work. We are confident that the project can influence the prevailing approaches in research – while bringing new respect for the skills, expertise and resilience of those who are living with dementia.

For more information contact Rachael on 01392 420076 or rachael@myid.org.uk.

I’m so glad that Dementia Awareness Week has changed its name this year to Dementia Action Week! While awareness is an essential foundation for change, in my view it’s high time we had more action. At Innovations in Dementia, we prioritise action-based projects which will have a real practical benefit for people who are living with dementia.

The Getting Along programme, designed by Damian Murphy, is a great example of taking a recognised ‘issue’ and turning it into action. This ground-breaking approach helps couples and families to avoid the many traps that dementia sets within relationships. The formal programmes for couples and families, as well as the training and facilitation courses for staff, equip learners to improve and balance issues in the relationship. Practical actions which can have a massive impact – and may indeed save a marriage.

Our Accessibility work strand is also highly practical. We have co-produced checklists to enable groups of people living with dementia to audit both outdoor and indoor public spaces. The DEEP network has produced a guide to accessible information. And my colleague Steve Milton also leads a service called ‘Crystal Clear’, which can help you to create information that is ‘not just easier for people with dementia to use – but easier and more enjoyable for everyone to use and understand’.

In contrast, ‘Rights’ may sound very abstract and high level… but again we have tried to bring them down to grassroots so that they are made real – and embodied in action. Our booklet ‘Our Dementia, Our Rights’ is the first written by, with and for people with dementia themselves – and it offers very practical information as to how to use rights in real life. Our Shadow Report to the UN Committee on the Convention on the Rights of Persons with Disabilities contains many real-life examples of rights breaches which call for practical action. (And we didn’t just write it – we supported Keith Oliver to physically take it to Geneva to ensure it really did reach the Committee!). Our recent Yorkshire project ‘Our Right to Get Out and About’ has also supported several DEEP groups to take practical action – including setting up petitions, writing letters, making iPhone films, and designing a huge banner –  to highlight very tangible injustices associated with parking and travelling.

Too often we hear about the importance of involving people with dementia – only to realise this is at best lip service. To do this properly you have to walk the walk – you have to take action. Dementia Diaries is one example of involvement – it’s an innovative project which uses audio diaries to bring us a wide range of voices of people living with dementia. The brainchild of On Our Radar, Dementia Diaries has now been integrated into DEEP. Rachel Niblock and myself support people with dementia as ‘reporters’. They can use a landline, a mobile, emails or an OwnFone at any time to file their reports – which range from the very personal to the very political! The project has huge potential to educate, to challenge attitudes, to connect and to motivate.

With the Dementia Words Matter Call to Action we again recognised that it was going to take collective action to fundamentally change the choice of words that are used to describe dementia and its day to day experiences. DEEP and the Dementia Action Alliance (DAA) joined forces to produce a film, some guidelines, an infographic and posters – as well as a Twitter campaign #dementiawords.

There are many more examples I could give you – but I hope that these few illustrate what we believe about Action. We believe it’s got to be walk not talk. We believe it’s got to be with not for. We believe it’s got to be rights-based not paternalistic. We believe it’s got to start with the person not the service. And we believe we’ve got to get on with it.

So let’s crack on, as they say in my part of the world!

Philly Hare