I grew up in an ordinary town in the foothills of the West Pennines, amongst ordinary people leading ordinary lives. Or in an extraordinary town full of extraordinary people living extraordinary lives.

A recent fascination for me is the story of Worktown – a mass observation study of the neighbouring town of Bolton in the late 1930’s, recording accounts of daily working life in painstaking detail. Amidst criticisms of such an enterprise (well-educated, middle class, chaps transplanted as anthropologists of northern working class life), the recording of everyday lives of ordinary working people -in the pub, the dance hall, the cinema, the mill and on holiday in Blackpool -brought these (extra) ordinary daily experiences, voices and stories to life.

In many ways, the everyday experiences, voices and stories gathered through DEEP and Dementia Diaries, mirror the social documentation of the Worktown observations. Diverse and distinct voices sharing multiple (and sometimes contradictory) views – but woven together in powerful and unfiltered documentation. Dementia Voices: not a top-down model of consultation but where power is directly in the hands of people with dementia to use their human stories, their real lives, to achieve influence, social change and peer support – “in our home, our street, our town or our country.”

We’ve been marking a moment in time recently. Collecting postcards of what DEEP means to people with dementia in groups; counting numbers of people, of ages, of genders (in essence a DEEP census) and capturing the story of DEEP- and the dementia voices within this burgeoning network. Giving space to people’s stories – of their lives worth living.

It’s a partial view – told from the perspective of people with dementia. Politicians, academics, medics, researchers, media, families and communities have their own partial view. Sometimes these partial views don’t rub along together – other times they connect to paint a broader picture. There is nothing wrong with being partial.

“But it’s our story, our history told in the ways we want.”

Extraordinary voices telling extraordinary stories about extraordinary lives.

Rachael Litherland
Co-director, Innovations in Dementia

Last month I accompanied Stewart, a member of York Minds and Voices, at the request of the local NHS clinical networks (I think) at a day’s event. This was designed to give local CCGs and relevant stakeholders in dementia care – mostly Health – a gentle kick up the backside to increase the diagnosis rates of dementia.

The entire UK list of CCGs in the UK in bar chart form, presented on unintelligible and illegible PowerPoint slide after unintelligible and illegible PowerPoint slide, confirmed the need for this.

I’d been asked to come and present a ‘patient or carer’ perspective to reinforce the message that it is important to get a diagnosis. I couldn’t believe there was still a need for this. Then I thought about two (probably of many) reasons why there might be some reluctance to diagnose, despite the unequivocal position statements of the major dementia charities.

Firstly, recently I was fortunate enough to interview the wonderful John Killick. He told me how he still saw receipt of a diagnosis as a potentially double-edged sword. He expanded his point. We always hear the mantra ‘once you’ve met one person with dementia, you’ve met one person with dementia,’ yet this principle goes out of the window at diagnosis. John says we need to provide personalised diagnoses.

Secondly, there are too many people coming off the diagnostic conveyor belt for overstretched teams who are tied up spending a lot of time measuring deficit. Third sector groups fare little better. They are making first contact, giving info on driving, powers of attorney and trying to get the benefits started – and then only able to check up around that six month time again. People with dementia are offered hit-and-miss Cognitive Stimulation and tired outdated ‘usual suspects’ of service – all stuff created by others.

The answer to that though is not to not diagnose, but to revisit how we operate; to frontload our response around the time of diagnosis; and to offer practical responses that are drawn from, and match the experience and expectations of, people living with dementia. Why do people have to wait for a diagnosis despite the presence of an obvious cognitive impairment? Certainly in Wales the ‘working diagnosis’ is advocated in the national plan.

I’ve never met anyone with dementia saying ‘I could do with a bit of stimulation now that I’ve been diagnosed’. In our brief ‘chat show’ style interview, Stewart instead mentioned the massive impact of receiving a diagnosis; and the many questions he was left with about the implications of it, his future, his mortality and his relationships.

We showed our five- minute film of the ‘Good Life with Dementia’ programme (http://bit.ly/2xHNpsv ) which was created and delivered by Minds and Voices members themselves. It covered all those questions and more. Who better to learn from than from peers who have been through the same experience, at a pace and in a place that is safe, comfortable and non-judgemental?

We went down well, finishing on a rallying cry to up their diagnosis levels, and to equip their own staff to populate a post-diagnostic pathway with practical stuff that matches the agenda of people living with dementia. Hopefully we helped remind people as to why they were there and offered a model that can be replicated elsewhere.

Stewart and I stayed until the next break (they had nice pastries). What followed was simply baffling. More unintelligible slides, long words and graphs. I gathered something about a new NHS ‘how to’ guide. Clearly a great deal of work had gone into all this information, none of which was understandable to people living with dementia. We saw countless screenshots of pages of this resource up on the screen. Stewart looked quizzically over at me and the sweeping gesture of his hand indicated it had all gone over his head. I read his lips: ‘It’s all gobbledygook’.

If it cannot be explained and presented simply in plain English to the person this is all aimed at, it is doomed to fail. ‘It’s not because you’ve got dementia, Stewart, that you don’t understand that!’ I said.

Stewart says, ‘They don’t understand what we’re thinking and we don’t understand what they’re thinking’ – not a particularly good starting point!

I was left with the sense that some people there had lost sight of what is essential, almost trying to make rocket science out of it all. It’s time to listen to and properly respond to the needs, questions and experiences of people living with dementia. ‘Just ask us!’ is something I hear frequently at engagement events.

We did that, and co-created the Good Life with Dementia course. You can too – then the diagnosis figures will look after themselves.

However, part of me fears that, long after Stewart and I had left with our pain-aux-raisins and maple and pecan slices, our input had been lost amongst the gobbledygook.

Here is a link to a great blog by my colleague, Steve Milton, giving a more in-depth look at the need for Crystal Clear language.

Damian Murphy
Co-Director, Innovations in Dementia

This week we have announced 11 ‘Dementia Enquirers’ grants, awarded to groups in the DEEP network. The successful projects aim to find out about:

• the benefits of Amazon’s Echo (Alexa)
• how to create dementia-responsive video content about using Amazon’s Echo (Alexa)
• the essential requirements for a multi-cultural meeting centre
• whether class and ethnicity have an impact on how a diagnosis of dementia is given
• the impact of people with dementia educating professionals
• what people with dementia and Admiral Nurses know about each other
• people’s perceptions and experiences of dementia – the pros and cons of considering dementia to be an invisible disability
• the emotional and practical experiences of stopping driving
• the needs of people with dementia who live alone compared to those living with a care partner
• what transport systems can do to help people live independently with dementia

The motivation for many groups who applied was to find out about issues that are important to them and also to learn some new skills as a group. Mentors from the world of research will be available to provide advice and support. But importantly “they will be coming into our world rather than us going into theirs”. These projects are owned by DEEP groups and led by members with dementia:

“We hope this process can show people just what we can do! We don’t know what this can achieve. But through this process it could be life changing.”

Five people with dementia – known as Dementia Enquirers Pioneers – made recommendations to the National Lottery Community Fund (our funder) about which projects to fund. They recorded decisions on an expanded score sheet – using whatever worked best for them, including numbers (1-5), drawings ( 🙁 – 🙂 ) or words they came up with that mapped onto these scores (super sad, sad, fine/OK/neutral/so-so, happy, super happy).

“Sometimes we used facial expressions and movement to indicate our feelings and scores. For one of us an excited dance movement indicated a (5) – super happy!”

You can view a film of the Pioneers (and some advisors) reflecting on the grant making process https://bit.ly/2LXkmcT

So, watch this space! The 11 projects are about to begin and will work on their topics for a year – with support from Innovations in Dementia, mentoring from research/evaluation allies, and via their connections to each other. A guide to carrying out research projects is available free of charge here https://bit.ly/2JD6WkJ

We hope 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. Early in 2020 we will announce another round of Dementia Enquirers grants for DEEP groups.

We don’t know where we are going, but we are going there together!

Rachael Litherland
Co-director, Innovations in Dementia

Women with Dementia: Speaking from the heart 

Is dementia a women’s issue? And if not, isn’t it high time it was?

In theory at least, this question has already been answered, by a steady stream of reports marshalling the evidence[1] [2] [3] over the past few years. We now know that dementia has not only become the leading cause of death among British women – but also that British women are far more likely than men to end up as carers of those with dementia. And in fact, across all regions of the world, dementia disproportionately affects women. Both prevalence and risk are higher – and, intriguingly, the symptoms women typically experience are more severe. Two thirds of primary caregivers are women – and, in all formal care services (whether in the community, hospitals, or care homes), the workforce is predominantly… women.

And yet… there is so little research focusing on the gender issues in care or dementia, and the experiences and voices of the women affected are almost always missing.

Led by Nada Savitch, we recognised this early on. Our JRF-funded project with York University [4] aimed to use stories and reflections from individual women to inspire and inform the debate in a unique and insightful way. Kicking off with a national conference at York University in November 2014, the project led on to a report, a short literature review, a website featuring thoughts and reflections, and several pieces of work with smaller groups. Together these showed that the way women experience dementia is affected by gender, but also by many other factors – including education, ethnicity, sexuality, class, age, and disability. It also highlighted frequent resistance to framing  – or even talking about – dementia as a women’s issue.

So what has happened as a result of all this work? Well, in our view, not a lot! National policies and strategies across the UK hardly mention women’s needs or contributions as a specific issue. There is little debate about the higher level implications of what we have discussed – the possible impacts on how we as a society should arrange and adjust matters of pay, benefits and pensions, research priorities and funding, reasonable adjustments, employment policies, public toilets, continence services and the menopause, scammers, family counselling.. the list goes on. And few if any professional groups are specifically trained in what to talk or ask about when interacting with women with dementia.

So that’s why, this summer (2019), we held a wonderful gathering of women in London, to shine a new spotlight on the issue. The private, women-only event, was hosted by the amazing Jane Garvey (presenter of Woman’s Hour and the ‘Fortunately’ podcast), and brought together 14 women living with dementia, and some of their supporters too. They spanned three decades in age, they were straight, gay and non-binary, they were from ethnic majority and minority communities – and they travelled in from Belfast, the Black Isle, Brecon and beyond. Some were single, some in couples – some had children, others didn’t. They included a former police officer, a manager, an international writer, a nurse, a minister and a care worker.

One of them, Wendy Mitchell, later blogged: “Everyone started to arrive, and the room started to fill with laughter and pure joy…Hugs were in abundance, new friends made and old friends reacquainted…that feeling of instant unconditional friendship hugging the room.”

In the space of just a few hours, we talked about retaining femininity, respect in the workplace (and in general), being ‘talked over’, losing roles, making adjustments and compromises within the family, sex, incontinence… and so much more. Here’s Wendy again: “We spoke of the role of mother being renegotiated. Dementia strips away so much from you, but stripping away the role of mother hits hard. I’m lucky in so far as me and my daughters were able to talk about it. Some families fail to talk and suddenly a mum with dementia is stripped of the most precious role – because those around her believe she now needs to be cared for.”

Serious issues all – but nevertheless there was much laughter in the room and many comedy moments (some completely unrepeatable). Every woman there inspired the rest – they were indeed, as one present described them: “some of the strongest, most honest, warm-hearted women I’ve ever met. They are more than inspiring.” The women they gained confidence and strength in just being together  – and found that they had so much in common that needs recognising and addressing. As another said: “we have a choice in life – lie down and die or get up and fight.”

So what next? Within the DEEP network, we have already started a regular online meeting place for women with dementia, using the ZOOM platform.  The ‘ZOOMettes’ will doubtless continue to grow, flourish and support each other. But the numbers who can engage with this are of course minuscule in the wider scheme of things (there are over 600,000 women with dementia in the UK [5]). So we will use the outputs of the event – a film, photos and an accessible booklet – to spread the word much more widely. There will doubtless be blogs and Dementia Diaries[6] too, from many of those who took part. We hope to co-produce guidance for professionals such as nurses and occupational therapists on ‘what to ask women with dementia.’ And we’d like to reach many more of the public through mainstream radio programmes and podcasts.

But at the end of the day, we’re a small outfit. We need many more allies (both female and male) to take up these issues and to shout out loud that Yes, dementia is a women’s issue! After all, it’s a matter of rights and equality. So what can you do?

[1] ‘Women and dementia: A marginalised majority’ (ARUK 2015)

[2] ‘Women and dementia: a global research review” (ADI 2015)

[3] GADAA  https://www.gadaalliance.org/women/

[4] ‘Dementia: through the eyes of women’ (Savitch et al:JRF 2015)

[5] https://www.dementiastatistics.org/statistics/numbers-of-people-in-the-uk/

[6] https://dementiadiaries.org/

Philly Hare
Co-Director, Innovations in 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

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 anna@myid.org.uk 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

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

[1] http://www.innovationsindementia.org.uk/

[2] ‘Not a one way street: Research into older people’s experiences of support based on mutuality and reciprocity’ Bowers et al 2011. JRF. https://www.jrf.org.uk/report/not-one-way-street-research-older-peoples-experiences-support-based-mutuality-and-reciprocity

[3] You can hear Wendy’s full audio Diary at http://bit.ly/2SnI99C

[4] ‘Human rights, disability and dementia’. Originally published in Australian Journal of Dementia Care February March 2018 Vol 7 No 1 http://journalofdementiacare.com/human-rights-disability-and-dementia/

[5] http://dementiavoices.org.uk/

[6] https://dementiadiaries.org/

[7] http://www.innovationsindementia.org.uk/2018/10/developing-an-alternative-research-involvement-framework-through-deep/

[8] Wendy Mitchell’s phrase, see her blog https://whichmeamitoday.wordpress.com/

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

http://www.innovationsindementia.org.uk/wp-content/uploads/2018/01/dementia-rights-policy-discussion.pdf

[10] ‘That Age Old Question’ Royal Society for Public Health 2018 https://www.rsph.org.uk/uploads/assets/uploaded/010d3159-0d36-4707-aee54e29047c8e3a.pdf

[11] Dementia: through the eyes of women. Savitch et al 2015 JRF http://eprints.whiterose.ac.uk/91782/3/womendementia_literature_review.pdf

[12]Tom Shakespeare https://farmerofthoughts.co.uk/article/is-dementia-a-disability/

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.

“UNIDENTIFIED ITEM IN BAGGING AREA”!!!

Excuse me?

“UNIDENTIFIED ITEM IN BAGGING AREA”!!!

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.
https://doi.org/10.1186/s13063-018-3069-6  accessed 12/02/2019

(3) Makaton: https://www.makaton.org/aboutMakaton/ accessed 12/02/2019

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.

Discussions

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.