How can we really make the Blue Badge work for people with dementia?

At last! People ‘who experience non-physical (‘hidden’) disabilities that result in very considerable difficulty whilst walking should be considered eligible to receive a Blue Badge’.  So… those with so-called ‘invisible disabilities’ – including dementia – can, from 30 August 2019, apply for a Blue Badge parking permit, which allows their car (whether they are drivers or passengers) to be parked closer to their destination. The recent announcement marks the biggest shakeup to the scheme in nearly 50 years.

As a result of the consultation, automatic entitlement to the Blue Badge will be extended to those in England who score 10 points under the Personal Independence Payment (PIP) mobility test of being “unable to undertake any journey because it would cause overwhelming psychological distress to the claimant”. Entitlement will also be extended to those who are assessed as having an enduring and substantial difficulty which causes them during a journey to either:

  • Be unable to walk.
  • Experience very considerable difficulty whilst walking, which may include very considerable psychological distress.
  • Be at risk of serious harm when walking; or pose, when walking, a risk of serious harm to any other person.

The new rules also allow local authorities to use a broader range of professionals to assess the nature and effects of an applicant’s particular disability on their ability to get around. However, despite the new criteria, local authorities will still have the final say on who does and does not qualify for badges.


Many people have been involved in this campaign – not least groups in the DEEP Network. Here’s a summary of the role they have played:

Two years ago, in the summer of 2017, we co-produced a report about Rights with a group of people with dementia (the ‘Dementia Policy Think Tank’). This included lived-experience evidence about parking.  One of the group, Keith Oliver, travelled with Philly Hare to Geneva to present this report to the UN Committee on CRPD, and he also had a private conversation with the Rapporteur at which the Blue Badge issue was specifically raised. The Rapporteur was amazed that people with dementia had been denied access to this in England.

Keith and Philly Hare subsequently raised the issue again at a meeting with the Office of Disability Inclusion (ODI) in October 2017. Within months the Government launched a national consultation on the Blue Badge scheme.

Meanwhile a group of people with dementia in Scarborough – called DEEP Vibes – were starting to campaign on the same issue, following a meeting of three Yorkshire-based DEEP groups to discuss ‘Our Right to Get Out & About’. People with dementia identified a number of problems that entitlement to the Blue Badge could do much to address. These included:

  • risks of abduction, abuse or a fall to the person left while their carer parks
  • getting lost, frightened, upset, panicky and perhaps aggressive
  • being unable to walk a long way from a normal parking space due to lack of road sense or poor balance
  • [when driving] having to park far away and forgetting later on where they parked.


There were also issues around application:

  • the medical tests were measures of physical ability rather than mental ability or need for supervision
  • questions on the form and in the Mobility test focused on physical ability, not the need for guidance and supervision
  • after you’ve been through “all that expense and confusion”, you may not even be awarded the badge
  • under-65s must be on benefit to qualify
  • decisions varied by area: postcode lottery
  • and the forms were too complicated


Spurred on by their growing understanding of their human rights, under the UNCRPD and the Equality Act, the group gathered a range of evidence and quotes. They then wrote to their MP, liaised with the local council, highlighted the issue in the local media and set up a petition which got well over 1000 signatures. The MP took the petition to Westminster and presented it to the Transport Minister.

The group also produced some photos with their messages on them.


Locally there was relatively quick success. The County Council agreed that people with dementia or their carers could now apply for a Blue Badge over the phone – and answer “cognitive questions” such as “How will a Blue Badge help you?”, “Do you want to give up and go home if things go wrong when you are out?”

The work done by the group also enabled us at Innovations in Dementia  to send in a very strong response to the Department for Transport when they opened the Government’s national consultation on the Blue Badge scheme in March 2018.

We stressed the evidence we had collected about the social exclusion caused by current lack of access to the Blue Badge and its direct contradiction of the Government’s strategy of ‘Living Well with Dementia’. We also highlighted the lack of parity across the UK, with many people with dementia in England feeling discriminated against in terms of eligibility for the Blue Badge, and its concessions and privileges relating to parking.

And then, in June 2019… the new changes to the scheme were announced. A fantastic result!


However… this is only the start of making the scheme fully accessible to people with dementia – even if they are eligible for a Blue Badge.

We have already highlighted to the Government the additional problems concerning the complexity and cost of applying for the Blue Badge, as well as the inadequacy of disabled parking bays, and the local variations.

So what needs to be done to make these changes really meaningful for people with dementia  – and how can we all play a part?

  • local authorities must be made fully aware of the new guidance and encouraged to apply it to their local scheme.
  • the changes need publicising very widely to ensure that many more people with dementia apply (whether they are newly diagnosed, or have had dementia for a while – and even if they have been turned down before). A proactive campaign involving health and care professionals, advice givers and third sector organisations would seem essential.
  • we must all spot ongoing problems and issues in the implementation of the new guidance, and highlight them to those in authority
  • local disabled parking bays should be reviewed and made more consistent. There are different rules in different places – sometimes you can park anywhere (e.g. in metered carparks), other times you can only park in allocated spaces. Some bays are only for disabled drivers (e.g. at hospital), not for carers. There are often not enough disabled spaces – more are needed. And spaces are often not wide enough.
  • we need to educate the public about invisible disabilities – public attitudes can be very aggressive.
  • the application forms are currently very complex, demanding a range of documents, and the cost is prohibitive to some (including cost of photographs). Most people with dementia would need help to apply, but not all have that help (one third of those in the community live alone).
  • finally, it is essential that people with dementia are offered a whole range of ways in which they can apply (e.g. phone, face-to-face, email, online, letter). One or two options will never meet the needs of everyone.

All of these changes are essentially ‘reasonable adjustments’ under Equality legislation. Which means that, without them, the human rights of those living with dementia will still not be adequately addressed.

Philly Hare
Co-Director, Innovations in Dementia



“I want to speak please”

Five small words that provide a platform to share, inform, connect and influence. Words might not be forthcoming, but the intention and the desire to be heard is (literally) made plain to see. Some of the first people with dementia I worked with in 2001 stated simply: “Listen to us. Hear us. We are here.”

They would have loved our yellow “I want to speak please” cards!

These cards have been doing the rounds now for over 2 years. It is so gratifying to see them popping up in meetings across the UK and captured in photos on social media. They are

  • a visual aid to help people feel confident to take the next turn to speak (“or else my thoughts fly away”).
  • a way of slowing meetings down, with people instinctively speaking one at a time.
  • a way of creating space for people to find their voices (“holding my yellow card makes me feel it’s OK to take my time”).
  • a way of helping everyone to feel more equal in a meeting – to feel that you have the right to speak in the way that suits you. It’s important that everyone uses the cards in meetings, not just people with dementia.


The cards are intentionally eye catching – and therefore hard to ignore. The yellow of sunshine, hope and optimism. They are handbag and notebook size and easy to carry around.

And they are not really about speaking – but about being heard.

A member of the DEEP network in the North West, spent a meeting handling his yellow card. He was a quiet man who had not so far contributed to the meetings. He spent a lot of time looking at his yellow card, turning it around in his hands, exploring the texture and feel. He then started to read out the words: “I want to speak please. I want to speak please. I want to speak please. This was the first time that anyone had heard his voice in the meetings. His peers were delighted – it was an act of communication that connected him and them in that moment in time….

“I then asked him what he wanted to say. He began talking about the view out of the third floor window, how the townscape had changed and maybe that was why he didn’t go out as much. He informed some of the younger members of the planning meeting about the history of their town. It was very moving, and it gave everyone the confidence to develop a DEEP group” (Paul, DEEP co-ordinator)

We are always happy to send out a number of cards for your meetings and gatherings with people with dementia. Please contact if you would like to order any. And do send us your photos of them in use! You can tag us at @Innov_Dementia on Twitter.

Rachael Litherland
Co-director, Innovations in Dementia



Life changing, not life ending: reframing the narrative on dementia and social care

Our work at Innovations in Dementia[1] supports people with dementia to keep control of their lives, and be happy. People with dementia are at the heart and start of all our work. Working alongside them, we promote a positive, though realistic, view of dementia, demonstrating that, although it is life changing, it does not have to be life ending. Indeed people with dementia are showing us all that they can recover – by which we mean that they can recover voice, control, identity and a place in their relationships and communities which often gets lost.

So what glimpses of the future of ‘social care’ can we offer, based on the work we do and the people we work with?

Well first of all, the very phrase ‘social care’ ties us up in knots, and acts as a huge barrier to new and creative imaginings. It carries heavy overtones of passivity, of being ‘done-to’ and ‘cared-for’, of tasks not processes, of institutions not relationships. It ignores the power of reciprocity[2]. It is grounded in an artificial and unhelpful dichotomy of means-tested social services versus free-at-the-point-of-delivery ‘continuing healthcare’; of grey areas such as ‘social bathing’ versus ‘health bathing’; of the very different cultures of the NHS and the Local Authorities.

For people with dementia (and their families and allies) these distinctions are frustrating, incomprehensible, energy-sapping, inequitable, paralysing. As Wendy Mitchell recently asked: “Why, when we say we have dementia, are we given a sad embarrassing look, with no words of encouragement? Why do we have to try to venture into the maze of bureaucracy to find, MAYBE, what we need? … Why is it that people with dementia are ignored and not deemed worthy enough of help? Why do I feel like we’re at the bottom of the pecking order, simply because we have dementia?”[3]

Many people with dementia come up against this chasm of indifference – which the Chair of Dementia Alliance International (DAI), Kate Swaffer, so perfectly describes as ‘prescribed disengagement™️’. As she testifies, Many doctors and service providers continue to promote giving up on life and ignore the possibility of living positively with dementia with proactive disability support, including rehabilitation.”

The DAI calls for a support pathway[4] which includes:

  • Focus on assets, not deficits, and quality of life.
  • Community-based rehabilitation.
  • Acquired brain injury rehabilitation immediately post-diagnosis, which includes exercise and other lifestyle changes in line with other chronic diseases, speech pathology, a neuroplasticity approach, occupational therapy and neurophysiotherapy.
  • Disability assessment and support, immediately post-diagnosis.
  • Grief and loss counselling, not just information about dying, aged care and ‘challenging behaviours’.
  • Peer-to-peer support groups for people with dementia, our care partners and families, and for those with younger onset dementia, our older parents and our children.
  • Support to maintain our pre-diagnosis lifestyle, if this is our choice.
  • Support to continue working if a person with younger onset dementia, again if this is our choice.
  • Support to continue usual activities, socialising, sport, recreation, community engagement, volunteering.
  • Inclusive and accessible communities – not just dementia-friendly, as too often the awareness-raising initiatives are still based on our deficits.
  • Palliative care.


Our work with many hundreds of people with dementia across the UK – through initiatives such as DEEP (The UK Network of Dementia Voices)[5], the Dementia Diaries[6] and Dementia Enquirers[7] – very strongly supports this vision. People with dementia are stating loud and clear that many of the barriers they face day to day are social, environmental and attitudinal – just as the wider disability movement has been saying for so long. They are also demonstrating that – surprise, surprise – they can adapt and adjust to (even ‘outmanoeuvre’[8]) many of the challenges they face, and can contribute their skills and expertise in so many ways.

So how about reframing social care as something like ‘Citizen Enablement’? That may not be the perfect terminology – but at least it highlights both our universal human rights to be supported and included, and also our capacity for ‘recovery’ and re-ablement – even when we live with a condition such as dementia. The future of ‘social care’ for people with dementia cannot be the social care we know, with its users, its providers, its commissioners, its regulators, its policy-makers and its legislators, all firmly in their different camps. It must be a collaborative social movement which really enables citizens, founded on the voices of those with the lived experience, on the principles of independent living, on choice and control, and on recognition of human rights[9]. It must be proactive, not reluctantly and belatedly reactive. It must be fair – not shaped by ageism[10] and sexism[11]. It must be simple, accessible, affordable. It must be of a human scale. It must be based on the ‘social experience of disability’[12] and draw on the skills of occupational and other therapies. It must focus on confidence building, not compliance. It must be proud, assertive and value-based.

The last word goes to Agnes Houston, one of our fifty Dementia Diarists:

I was diagnosed with dementia of the Alzheimer’s type eleven years ago. I feel it was in the dark ages… Now… yes, more voices of people with dementia are being heard. We are shouting, shouting loud…We are now a movement, a United Kingdom movement, who demand our rights…”

Philly Hare
Co-Director, Innovations in Dementia



[2] ‘Not a one way street: Research into older people’s experiences of support based on mutuality and reciprocity’ Bowers et al 2011. JRF.

[3] You can hear Wendy’s full audio Diary at

[4] ‘Human rights, disability and dementia’. Originally published in Australian Journal of Dementia Care February March 2018 Vol 7 No 1




[8] Wendy Mitchell’s phrase, see her blog

[9] ‘Dementia, rights, and the social model of disability’. Mental Health Foundation 2015

[10] ‘That Age Old Question’ Royal Society for Public Health 2018

[11] Dementia: through the eyes of women. Savitch et al 2015 JRF

[12]Tom Shakespeare



If at first you don’t succeed………smash it to bits with a hammer

Steve Milton’s Blog……

I had just moved into a new house in Tottenham. There was a Large Swedish Home Furnishings shop nearby, and I was keen to try out the idea of flat-pack furniture for the first time.

I’d get back with my large box. Unpack it.

Lay out all the bits of wood, screws, plastic plugs and metal thingamyjigs.

Then I’d open the instructions.

That’s when my problems would start. The instructions appeared to have been written in Swedish, then translated into Urdu, then from Urdu into English.

By someone who spoke no Urdu, no Swedish, and certainly no English.

Routinely my best efforts would result in tangled mess of ill-fitting parts that were destined to fall victim to my heartfelt DIY motto:

“If at first you don’t succeed………smash it to bits with a hammer”

In fairness to Large Swedish Home Furnishings Companies – their instructions have improved enormously in recent years. I can honestly say I haven’t smashed any of their stuff to bits with a hammer for, ooh, ages.

I wish more companies would listen to their customers complaints though, and really think about how they explain things.

After all, we are much more likely to buy something or use a service if we understand what it is and how to use it. You’d imagine companies and organisations would be falling over themselves to be clear in their messages.

But no. From bus timetables to self-service checkouts in supermarkets we are bombarded by messages and instructions that seem to be purposely designed to make our day just that little bit harder.


Excuse me?


The merciless torturing of the English language aside, what on earth does it mean, and what I am meant to do about it?

Of course, most of the time we can work out what things mean.

We just damn well shouldn’t have to anywhere near as much as we do.

…..and it’s not just one thing of course – as we go through our day we encounter these little challenges over and over again – each one of which adds another little bit to our ‘cognitive load’. Each makes our day that little bit harder, bit by bit, message by message. They might seem like little things, but together they weigh us down.

The onset of dementia can make it even harder for people to translate bad information. This can make it harder to people to get out and about, and to do many of the things the rest of us take for granted.

These can be very real barriers for people.

  • The badly designed bus timetable that meant someone got on the wrong bus and got lost, or went home having failed to work out what to do next.


  • The shrieks of outrage from the self-service checkout, devoid of either meaning or direction that sent the would-be customer scurrying out of shop, mission unaccomplished.


We know what can happen when we begin to struggle, or fail in certain tasks. It means we are less likely to risk failing again, and stay home where it is safe. We disengage.

Many people with dementia have told us that a single incident like this can send them into a tailspin and have a huge impact on their confidence in their ability to interact with the world. They disengage.

How much easier would life be for all of us of if things were just a little bit clearer?

This is why, a few years ago we worked with a small group of people with dementia to write guidelines on writing dementia-friendly information.

Since then we have used them to produce dementia-friendly materials for lots of events and organisations, from conferences to lay summaries of academic papers.

What is very striking though is that not only do people with dementia find these versions easier, so does everyone else.

We first realised this when we produced a dementia friendly timetable for a conference. We had to go across the road to a photocopying shop for more copies as they had all been snaffled up in preference to the main conference timetable.

We can see the impact we can have by making things just a little easier for everyone.

That is why we are working with people with dementia on a new service called Crystal Clear.

Crystal Clear will help organisations to produce information that is easier for everyone to understand.

We have already started to work on some documents for another dementia organisation – and people with dementia are proving hugely insightful into the changes that need to be made.

When we are finished, I want to revisit the guidelines we wrote about dementia friendly information. They were written a few years ago, and things have changed. We’ll be involving the whole DEEP network in a discussion about the challenges that people face in understanding written information – and this will help us to provide better guidance to others.

We believe that people with dementia have unique insights and understanding of how to make the world an easier and better place for everyone.

My dear friend Lynda Hughes once said to me “people with dementia have a wisdom that I don’t see anywhere else. They can save the world”.

Sometimes as the messages from mobile phones, computers, video screens and the Daleks inside self-service checkouts swarm around my head I am reminded how right she was.

Now where’s my hammer?



















I’ve just been reading some excellent material by Swarbrick et al (1) and Morbey et al (2). It covers work that has been going on to ensure meaningful involvement and inclusion of people with dementia as co-researchers rather than as subjects of research. There is a powerful recognition of the need for a move away from ‘researching on’ to ‘researching with’.

This has been recognised too through an award from the National Lottery Community Fund for the Innovations in Dementia project, Dementia Enquirers – where people with dementia within DEEP (the UK network of Dementia Voices) shall be equipped to develop their own research questions; lead on their own research ideas; and create their own research methods.

It sounds ambitious and it is. Scary too! The language of academia has evolved and developed over centuries – not, as some critics may believe, to bamboozle the uninitiated and to maintain a magic, a mystique and an air of superiority and uber intelligence over the rest of us mere mortals – but rather as a short hand. It may be hard to believe to a lay person like me, but a lot of those long words are in fact a short hand – a language of convenience amongst academics – actually to be succinct!

There is a growing movement of people with dementia with a new (or a louder) voice that is now seeking, rightly, to take ownership of research under the ‘nothing about us without us’ rallying call. Indeed, as my friend Paul, a member of York Minds and Voices, said several years ago now, ‘If you’re doing research about dementia and you don’t include people with dementia, then you’re wasting your bloody time’.

But it’s not that simple. Entering this world, deciphering studies and literature already created in essentially another language, with a limited capacity to learn this new language, is not going to be easy.

I speak ‘pidgin academ-ese’. Certainly not fluent, but good enough to get a point across, ask a question and try to plan something or test out something.  But I’m still bamboozled by a lot of academic reports I come across (just look at the title of the two articles I have referenced at the start of this piece!). I skim quickly to the executive summary or the conclusions section in the hope there is a simple message or finding that I can cling to.

But from the point of view of the academics, one can imagine the reaction to a bunch of potential upstarts entering their domain and expecting to be understood. Akin to a lobster-coloured Brit on holiday in the Costa Brava landing at the bar, shouting ‘dos bieres por favour, garcon!’

One can understand a trepidation at no longer being amongst those peers who ‘get’ their shorthand created over centuries; that they might be slowed down by the pain of having to accommodate a new cohort in their midst.  But accommodate they must!

My kids tell me Latin is dead and look to the heavens when I state the contrary, but I must point out that ‘accommodate’ is indeed from the Latin ‘to make comfortable’. So, making comfortable is NOT a pain at all and that goes for both sides.

The inclusion of people with dementia in research is not about usurping power or knowledge, it’s about collaboration (from the Latin, ‘working together’!). No-one expects someone to enter a new culture and to speak the language fluently, nor should that language or culture be disabling. But we can find a comfortable space.

I got thinking about an equivalent ‘comfortable space’ I came across years ago, as a young nurse in learning disabilities. People with communication difficulties were not excluded nor expected to be fluent, but the brilliant and simple MAKATON language system (3) helped create many positive connections. This method involved the use of signing only key words in a sentence to facilitate communication.

So, we must ask ourselves, what is the MAKATON equivalent for people with dementia to engage, to ask a question, to test a question, to explore ways of measuring and carrying out those tests and questions? The Dementia Enquirers project will no doubt go a long way to contributing to a necessary and an inevitable change in the language around research.

We should all look forward to more comfortable times…

By Damian Murphy, Director, Innovations in Dementia.

(1) Swarbrick et al (2016) Co-producing a model of involvement and engagement in research (Innovative Practice) Dementia 0 (0) 1-8

(2) Morbey et al (2019) Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development.  accessed 12/02/2019

(3) Makaton: accessed 12/02/2019



Minds and Voices Opening minds and moving forward

As a director of Innovations in Dementia, I am involved in a range of different projects, but one important part of my work is to help facilitate the Minds and Voices group, part of the DEEP UK network of dementia voices.

Last month at Minds and Voices we created a constitution. It’s no big deal really. Loads of other such groups have done it  – in fact we drew on some of their documents. Here is a brief piece covering why and how we came to produce our constitution together.

The Need

Essentially the money is beginning to run out!

We are very much an independent group and we are not (yet!) hosted by a local authority; by a local mental health trust; nor by a local third sector group.

So, without that back up we need to raise funds to pay for transport, back office administration, facilitation time, catering and venue hire each month.

By gaining an official status, we will be able to bid for a wider range of funding, not only to keep us going but also to help us co-create and join in more projects.


Creating the constitution together

We haven’t just thought the words up on the spur of the moment for the sake of creating a constitution. In fact, we’ve really been creating a constitution for 4 years now since when we chose our name and strap line.

Opening minds and moving forwardcaptured our aims to open the minds of our local communities by sharing and demonstrating the positive message that people can live as well as possible with a diagnosis of dementia.

There was a real keenness to be as informally formal as possible. We adapted a version of the SURF DEEP group constitution and together spent a whole meeting going over it with a fine-tooth comb.

Everybody was able to contribute in their own way (even those who were absent on the day) checking the broader general statements; avoiding repetition of words; ensuring every comma was in the right place (a particular gift of Stewart’s!); re-phrasing sentences, making them clearer or even omitting chunks too as we aimed to keep things simple.



We had debates about voting rights and capacity.

Although several care partners regularly attend and contribute to the group, we were clear that if ever we held any votes, only members living with a dementia would participate.

This led to talking about members who might become more dependant and incapable of making decisions. What helped here was the fact that over 4 years we looked at how we have enabled people of all capacity for a long time. From experience we all knew that everyone can contribute in many ways though not always in every discussion and that was fine.


Roles in a more formal organisation

Paul wisely mentioned that given the nature of dementia the roles of treasurer, secretary and chair would need plenty of support. His exact words were,

‘you’d be crazy to put one of us lot in charge of the money, given what we’ve got!!

Damian had met with the helpful advisor at the local Council for Voluntary Services who told us that in fact one does not need to have a named chair, secretary or treasurer in a constitution so long as the group ensures these duties are carried out.

This was a relief to everyone and, when we found out that becoming a Charitable Incorporated Organisation meant that there would be no financial liability on members either, we went for it.

The advice we received matched that laid out in the very helpful draft DEEP guidance on becoming an independent group that had been sent through to us.

At Minds and Voices we created a constitution. It’s no big deal really. Then it was time for a well-earned lunch!

By Damian Murphy, Director, Innovations in Dementia.



Reflecting on my 20 years of working in dementia

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.

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.



Developing an alternative research involvement framework through DEEP

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

Time for Action, not just awareness!

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