It has been a few weeks now since the Alzheimer’s Society launched the video based around the message that ‘people with dementia die again and again and again’

It has been concerning to see what has unfolded in recent weeks because of this advert.

It has caused a lot of distress, anguish and fear, and has polarised people who all feel strongly about dementia into different groups who are now fighting each other and undermining each other’s experiences and work.

We have seen ideas and words used to describe people with dementia that we have not heard for decades. In short, there has been a lot of collateral damage. To read some of the comments on social media, one would imagine that those who promote ideas for living well are utterly delusional about what might lie ahead. On the contrary, everyone with whom we work has scars on their back from dementia – and from the stigma that goes with it – something which this advert will not help with, and in fact makes much, much worse.

The main problem is not to be found in the words of the carer in the advert, but in the voice of the narrator that takes over towards the end, reminding us that “people with dementia die, die and die again.”

This is a critical line which is spoken on behalf of Alzheimer’s Society. It shifts the position that ‘people with dementia die again and again’ from the experience of the son in the advert to that of Alzheimer’s Society. It changes the message from a carer’s perspective to, in the words of one of Alzheimer’s Society’s tweets, ‘The Unvarnished Truth’.

We suggest that the story in the advert is not THE unvarnished truth, it is AN unvarnished truth – but by putting those words into the mouth of the narrator, it becomes THE truth, especially in the minds of the target audience – those who know little about dementia.

Since the advert launched, we, and many of those with whom we work (and with whom the Alzheimer’s Society have worked) have come under sustained attack on social media for sugar-coating dementia. Protests at the impact of the advert been dismissed as overly dramatic or even opportunistic. The same attacks have also been made upon carers who voice their opposition, or who have said that their experiences were different.

The Alzheimer’s Society argue that the message of the advert is not meant literally, and that it is a metaphor……and yes, of course it is a metaphor, but a metaphor for what? For loss? For social death, for death of self, of one’s place in the world, of one’s identity? Unfortunately, people hearing the advert are not given a 16-page guide explaining the meaning or the rationale. All many have heard is that they are dead. Metaphorically of course.

We have tried really hard to be balanced in everything we have said publicly about this advert, and in reaction to people in the DEEP network. When we invited DEEP groups to send their comments in for us to collate to send to the Alzheimer’s Society we made it very clear we made no assumptions about how people would feel about the advert.

There were a handful of people who felt favourably about the advert, and many who didn’t. For ease, we categorised people’s comments. Many people talked about the lack of balance in the advert and the potential to deepen a stigma which is already pervasive.However, by far, the majority of responses report fear, sadness, and distress.

These were comments mostly from carers of people with dementia.

We have seen very visceral (and sometimes very concerning) reactions, to the advert, across social media platforms from carers and people with dementia. These include at least two reliable reports of people with dementia expressing suicidal ideation as a result of seeing the advert.

So our question to the Alzheimer’s Society is this:

Can you, an organisation that offers help and hope to people with dementia and carers, justify any collateral damage to part of your constituency to further your message? 

We know that Alzheimer’s Society has an unenviable task to be there “again, and again, and again” for all people with dementia and carers at all stages of dementia.

But this advert undermines its work and funded research that has driven work to challenge stigma, increase awareness, encourage diagnosis and support people to live as well as they can.

Alzheimer’s Society is a large and far-reaching organisation. The framing in this advert will influence how people with dementia feel about their diagnosis, how families think about dementia and how the dementia sector treats people with dementia, for decades.

We have two simple suggestions:

• Edit the very end of the advert so that it is not Alzheimer’s Society stating that people with dementia ‘die, die and die again.”
• Engage the dementia sector in discussion and explanation. We, therefore, encourage Alzheimer’s Society to look at the offer made by Dementia Community to use them as a conduit to engage with the sector.

We hope Alzheimer’s Society receives our perspective in the spirit in which it is delivered – as we all know that it is better when we understand each other and work together.

Above quote from the York Minds and Voices Dementia Strategy.

At the UK Dementia Congress in November last Year, Professor Claire Surr delivered the Tom Kitwood memorial address. It was based on her in depth study on ‘What works in dementia education and training’.

It’s a great piece of work. Professor Surr rightly highlighted the importance of context in dementia training. She mentions the need for a learning culture to be present. (You can watch the full address here)

It very much chimed with a lot of the questions I have been asking myself over the years about how and why training works in some places and not others and about how to create more of a culture of learning.

Some time ago I was asked to be on a sub-group to look at the ‘learning well’ element (what else?!) of a local dementia strategy. I got the sense we were expected to come up with a long list of who should know what at what level – a sort of matrix if you like. It’s the sort of stuff that is out there in abundance along with tiers of learning, workbooks and lots of certificates. I just knew putting something like that together would not make any significant difference and would frankly bore me to tears.

Back in November at the UK Dementia Congress a ‘Question Time’ panel were asked their thoughts on dementia training being mandatory for all. ‘Oh yes!’, people cried. ‘Oh no!’ I thought.

I imagine all those young people, fresh into the job being given workbooks and targets hanging over them. Such training has, I’m afraid, become part of the ‘processing’ of new staff and satisfying regulatory requirements rather than anything that might serve to retain staff or to create a sense of belonging or ownership of learning – A culture of learning if you like.

I can’t be the only person who finds working in and thinking about dementia care absolutely fascinating. So, how we might feed and fuel fascination in the area of dementia learning and development is exactly what we focussed on in our ‘learning well’ sub-group.

You see, the mandatory element shouldn’t be on the staff to churn out buzzwords on workbooks or to sit for hours in front of online learning modules. Rather the obligation should be on organisations and wider communities to offer an engaging, fascinating suite (or a buffet) of learning opportunities for ALL. That way, anyone can pick and choose to access whichever learning opportunity fascinates them. This promotes an ownership of learning i.e. people being invited to learn stuff rather than being told to.

There is a whole range of fascinating topics and resources out there to make a buffet worth gorging on!  Many, if not all of these, can be updated, re-designed and delivered with and by people with dementia too.

Only last week we delivered a 2-hour learning session to 20 local community health and wellbeing staff. By ‘we’ I mean myself and 3 people living with dementia. ‘I’ve learnt more in the last two hours than I have in the last 4 days when I spent all day looking at online tick-box, mind numbing so-called training,’ said one participant. Why, because our session, entitled ‘Engaging in Everyday Situations’ was fascinating. The first-hand testimony was powerful, frank, challenging and informative. It stuck.

If you want to ensure that you lay out a buffet that meets the learning needs of all, there are 3 questions I believe need answering:

1. What is it that people with dementia want others to know and learn? So, it begins as ever with people with dementia at the heart of the work
2. What is it that people with dementia and their care partners and supporters want to learn themselves? and…
3. What is it that organisations, staff and all other stakeholders say they want to know and learn?

I think up to now, talk of a culture of learning has focused almost exclusively on question 3 – the learning needs of staff and their organisations. However, to create fascinating relevant learning opportunities, you cannot ignore questions 1 and 2.

So, please, collaborate, not only with people living with dementia and their supporters, but also with other local stakeholders in your area.

Create and sign up to a ‘commitment to learning’ across your patch.  We are currently working with the London Borough of Hammersmith and Fulham to do exactly that and looking to do some of the following as part of what they are calling their Dementia Academy

• Involving local residents with dementia in the design and delivery of learning and development activities across the Borough
• Opening training to each other and families and people with dementia too
• Providing access to learning events across disciplines and organisations
• Hosting an ongoing learning and development conversation to share ideas and reflect on practice and issues across the Borough
• Pooling of training budgets and resources
• Provision of ongoing group supervision/action learning opportunities for staff (from across all sectors) engaged in what can be intense and intensely stimulating work.

So, if you want to continue the discussion and would like support in answering those questions one and two from above, do not hesitate to get in touch with us. We’ll be fascinated!

Damian Murphy
Co-Director, Innovations in Dementia

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”!!!

Aside from the merciless torturing of the English language, 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 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, about ten years ago we wrote some basic guidelines on writing better information for people with dementia.

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.

We have been rewriting and expanding these guidelines over the last few years. We worked with the Dementia Diarists DEEP group, and created an online survey which was completed by 123 people.

You will find these new guidelines here:

http://www.innovationsindementia.org.uk/wp-content/uploads/2023/01/accessible-writing-guide.pdf

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?

A New Year can often feel like a time of change. We write commitments and resolutions to   be more active, develop ourselves, lose some things, gain others, transform into the person we once were or would like to be. But the Almanac I received as a kind Christmas gift says that, contrary to popular belief, January is a time for rest, reflection and imaginings, not a time for new beginnings. It gifts us with time to plan and explore possibilities for the coming year.

In one way, Innovations in Dementia enters the New Year at a time of change. We said the fondest of farewells at the end of 2023 to Rachel Niblock who was the DEEP co-ordinator since 2015, and Philly Hare who retired after 8 years as a co-director. New adventures beckon both of them. We remain a small, but steadfast team of three, a number we are familiar with from the early days at Innovations in Dementia. A triangle of Damian, Steve and Rachael – apparently one of the strongest geometric shapes (a triangle that is, not a Damian, Steve and Rachael!)

So, although it may feel like a time of change, we are actually standing strong and stable to continue the work of Innovations in Dementia. Here is a little look to our plans for 2024.

• We are perhaps best known for hosting the DEEP network – the UK wide network of over 80 groups of people with dementia. It remains our privilege to continue to provide the scaffolding to this independent, diverse and rights-based network.

• We also want to build on the success of the Dementia Enquirers programme and find other opportunities for people with dementia to lead, direct and shape dementia research. We will continue to act as a gateway between research and practice and people with dementia

• We want to build on our Dementia Diaries programme to include more dementia voices in different formats, and to expand this personal archive

• We will continue to work in health, social care and third sector systems to influence practice particularly through our Good Life with Dementia and Getting Along programmes

• We will be launching our guide to writing accessibly for people with dementia later in January (watch this space!) and remind you to make the most of all our freely available resources at Innovations in Dementia, Dementia Enquirers, DEEP, Dementia Creatives and Dementia Diaries

• We will be building on work around self-management (e.g My Life, My Goals), work with libraries and counselling with people with dementia.

• Most importantly we will continue to work with people with dementia to define and design projects around issues that are important to them – centring on rights, accessibility, dementia voices, belonging, recovery and discovery.

In the meantime, if you would like to rest, reflect and imagine with us, do get in touch.

With our best wishes

Steve, Damian and Rachael

With my retirement date at the end of 2023 looming, it feels like a good time to reflect back on almost half a century of ‘work life’. So please indulge me while I reminisce just a little!

Perhaps because my Dad was bipolar (or ‘manic depressive’ as it was then called), I have, I think, always been drawn to those who have the experience of disability or long term ill-health, and in particular to those with conditions which society deems fit to mock, exclude and stigmatise. While a sixth form student I set up a visiting scheme to the local psychiatric hospital, which was very eye-opening for girls with a sheltered upbringing, but which also taught me how mental ill-health can happen to any of us, at any time! Between school and Uni I got a job away from home as a nursing auxiliary in a long-stay hospital. I looked after very severely disabled children whose parents visited them only on special days such as birthday or Christmas (absolutely no judgment here – I’m sure they had been advised that was for the best.) Then, following Uni and a few years travelling the world, I got a job as a social work assistant in (another) large mental hospital (again, using the terminology of its time). My job was to support many of the long-stay patients to move into ‘care in the community’ (which seemed to mean hostel, group home or whatever). Some had been in-patients for decades and one had even been born there as the child of a ‘feeble-minded’ patient (yes, this was her official diagnosis). Though some seemed to benefit from this uprooting, for others it felt like a simple transfer from one bigger institution to a smaller one, with the additional trauma of fractured relationships, roles and identities that had been built up over many years. All these experiences were, as you can imagine, quite formative for the younger me.

I decided to train as a social worker and from then onwards, I have worked with adults with physical and/ or learning disabilities, family carers, older people and people with dementia. Although the specific conditions and organisations I have worked with have varied over the years, and policy and practice have been through many crises and iterations, what strikes me most is the shared experience that all those people had. The experience of being disabled by societal attitudes.

Going back to my Dad, the thing I remember most was how my Mum felt obliged to completely hide what was happening, even, I believe, from their closest friends (and for quite a while, from us children). As he was an architect, it was accepted that any whiff of mental illness would scupper his reputation, his practice and of course, the family income. So, as his office was at home, Mum had to regularly field phone calls, letters and all other contacts with lies and half-truths about his absence, while Dad lay (sometimes for weeks) in a depressed heap in their bed, or alternatively was high as a kite, out spending everything on fast cars we could no way afford! With hindsight, how hard it must have been for them to have no one to talk honestly with about a situation which was hugely disabling and stressful for them both. And how much more could Dad’s wonderful creative bi-polar brain have contributed if society had only understood it better.

Fast forward to dementia and the programme ‘Dementia without Walls’ which I set up in 2011 while at Joseph Rowntree Foundation. Inspired by those who I met early on, the programme aimed to explore new ways of framing dementia. We looked at dementia through many lenses – gender, sexuality, language and imagery, collective living, peer support – and learnt a huge amount from those with the lived experience about the barriers and facilitators to a meaningful life. It was in this period that I met the wonderful folk at Innovations in Dementia.

And now for the last 7 years I have been hugely privileged to be a co-director with Innovations. This role has brought me into contact with hundreds of people living with dementia, and I have worked alongside many of them on projects big and small, long and short. Some have been academic, some creative, some essentially activist. Again my overriding impression has been of the talents, potential and resilience of these people, ordinary men and women who have been hit by the predicament of dementia and who have had to find the strength to reinvent themselves and just get on with life. How much easier this could be if we, society as a whole, could keep our focus squarely on the person, not the dementia, and work to ensure they feel included in every aspect of normal life. How much easier if the media presented dementia as a predicament rather than a tragedy. How much easier if we didn’t all leap in our minds straight to the end-of-life when we hear about a friend’s diagnosis (there is often plenty of life to be lived between those two points). And how much easier if the State supported people living with dementia with counselling and a whole range of rehabilitative therapies that are much more available to those with other conditions.

Of course, things have changed for the better in many ways. To my knowledge, hospital wards no longer dish out tea-with-milk-and-sugar from one enormous teapot, as they did on the long-stay wards of those psychiatric hospitals. Nor are patients put two in a bed on their annual holiday to Butlins, to keep costs down (yes that really happened). Hearing people with dementia speaking at conferences or on TV, or co-researching with academics, is no longer a surprise – though it is always powerful. But still people with dementia are routinely denied the reasonable adjustments to which disability law entitles them. Fewer are receiving any services at all, as local authority budgets shrink and eligibility criteria tighten. We cannot be complacent.

But the great weapon we now have is the voices of people with dementia themselves. They will not go back into the box. We are seeing how new voices pipe up as more people get diagnosed and form connections with each other. How, through the DEEP network, groups come together to work for change. And how individuals are challenging attitudes and practices through making their own films, art, books, songs and blogs. This alone keeps me hopeful about the future.

So I’d like to finish by saying a huge thank you to all the amazing people I’ve met and worked with on so many wonderful projects. I have learnt more from each and every one of you than you will ever know.

I will have plenty to keep me busy. I will keep felting and have recently started (though may well not finish) a fine art degree – which is fun, but also a constant battle against impostor syndrome. I also need to keep planning visits to my 3 sons (and grandson Rupert) who all live on different continents – I’m very lucky that they have chosen three wonderful places (Bavaria, Boston MA and Nairobi), though they are all long journeys from Lewis! I am planning to volunteer in South Africa next year too – something I’ve always wanted to do but never had the chance ‘til now. And I also want to get more involved in my local community up here in Ness.

Really my only fear about retirement (apart from – can I afford it?!) is that I might lose touch with you all – you are part of my life and I care about your stories and how you are faring. So please do keep in touch, if you want, via my email phillyhare@gmail.com, or through social media (https://www.facebook.com/philly.hare and https://www.instagram.com/fullmoonfelting/ )

Take care!

In spite of frequent calls for it, more time, more money and more staff to solve our issues in health and social care will not be forthcoming. The need to revisit how many of us operate has become increasingly pressing. We must innovate.

People did not stop getting dementia during lockdown, nor did dementia go into lockdown for those already diagnosed.

I was going to title this blog ‘Learning from Dementia Voices – Lessons for a post-pandemic world’ for that is what it is about. We have in fact compiled a more complete report under that title that we encourage you to read here. It is full of links to fantastic resources that can help us all.

In the meantime, I want to issue a challenge or a call to action to all of you whether working in Health, in Social care, in the Arts and in Academia, or anywhere for that matter.

When the pandemic hit, we were all very much out of kilter and initially at a loss as to how we might respond. It’s at times like these that we must go back to those people at the heart and start of our work. It’s still and always has been about hearing and heeding the voices – the Dementia Voices.

The dementia voices are out there as an inexhaustible resource and, over the last couple of years, they have told us though word, deed, creativity, action and inaction so much about what is needed. For example:

We must prioritise and invest in a relationship-focused approach that can begin in the pre- or post-diagnostic period. Get in touch with us to find out more about Getting Along facilitator training as well as opportunities to shadow the practical intervention for you and your colleagues.

It is so important to tap into the creative potential of people living with dementia. Do visit the Dementia creatives site – home to an array of brilliant displays of creativity, art and film and is full of examples of where people with dementia have led groups and shared their skills with others, rather than being ‘done to’.

We need to promote awareness of the capacity that people with dementia have to find and share their own strategies. The Dementia Tip-share site is there for all to use and to contribute to. A great self-management resource is the brilliant ‘co-produced’ My Life My Goals cognitive rehabilitation resource. This came out of the new ‘Living With Dementia Toolkit’

We should all recognise and resource the power of peer support. Every area needs groups of people with dementia that are growing, evolving, interested and engaged. It is no accident that certain groups are always keen to get involved in projects and research. It’s born of a freedom and a sense of belonging to a group, something that is common to all those groups in the existing DEEP network. Start building your own local peer network and tap into the national conversation too!

People with dementia should be supported and resourced to take the lead in ALL dementia-related learning and development. Who better to learn from than people living the experience? This learning is not only for peers (such as with A Good Life With Dementia  programme) but also for all workers, volunteers, families involved in the field of dementia care.

Support and resource groups of people with dementia in your area to investigate their own questions that will naturally crop up as peer groups continue to meet. The experience of peer groups in the driving seat of their own research and the legacy of resources coming out of the Dementia Enquirers programme means together we can make research accessible to all.

Finally we must support access to the free space of the Dementia Diaries site! It has served as a treasure trove of information and insight for educators, researchers, policy-makers and journalists.……but most importantly, for others with dementia. 

In summary

People with dementia CAN (if given the right opportunities and support) create, express themselves, welcome, befriend, research, host, lead, teach and learn together… so they SHOULD! This is our call.

It is not a new call. It was first made in 2013 in the brilliant JRF publication: A Better Life: Valuing our later years, written by Imogen Blood. Please read this still relevant report. She asks all of us to address these 7 challenges that I have paraphrased below. In our work…..

1. Is it ‘all of us’ or ‘them and us’?
2. Can we see beyond the label?
3. Can we help people connect?
4. Can we focus on what people CAN do?
5. Can people be active citizens?
6. Do we really listen to what people really want?
7. Are we reflecting, questioning and challenging?

People who say ‘we already do that’ are probably referring to only a few elements of those seven challenges. However, they are all interdependent – yet not impossible to achieve together.

The reference to co-production and self-management approaches that we have referred to here, are based on real examples and they match the desires of people receiving services. We have a massive untapped resource amongst relatives, neighbours, fellow service users and our own workforce. Sometimes the solutions are really simple – of course more staff, more time and more money will help (they are long overdue!). In the meantime, the need to revisit how many of us operate has become increasingly pressing. We must innovate.

Come with us!

Damian Murphy
Co-Director, Innovations in Dementia

There will soon be over a million people living with dementia in the UK – and each and every one of them is disabled, not only by the symptoms and challenges of the condition itself, but by many unnecessary societal and environmental barriers. While others are working on treatments and cures which may help those affected in the future, we are committed to tackling the non-medical barriers they face in the here and now. We believe that we all have the power to change or minimise these barriers, by making adjustments both to the physical environment, and to our attitudes and behaviours, and by adopting a rights-based approach. And we know that we can do this – if we all work together.

In the past couple of years, Innovations in Dementia has collaborated with 8 other major dementia organisations, who have come together as One Dementia Voice (ODV). We have produced a vision based on what people with dementia have told us about these barriers, and what we know about their human rights.

Our vision is that:

• We must focus not only on the medical aspects of dementia, but also on the many other barriers which disable those affected.
• We must address these societal and environmental barriers proactively, thinking more about rights, citizenship, inclusion and equality.
• In this way we can each play our part in bringing more hope and meaning to the lives of those of us who live with this condition.

Our vision is about hope, enablement and positivity. Recognising dementia in terms of disability rights and citizenship can empower, and give hope to, those who are diagnosed and their families.

This approach helps us all to focus on how the disabilities associated with dementia connect with social, attitudinal and environmental factors; with the strengths, resilience and abilities of people with dementia themselves; and with the principles of solidarity and inclusion. It should help people
with dementia to access everything that others, with or without disabilities, access – and to remain active citizens and participants in their own lives. Society can also learn from them what the barriers are, and redouble its efforts to minimise them through what the law calls reasonable adjustments /accommodations.

The vision has been endorsed and tested by the nine ODV member organisations in the course of 2022. While progress inevitably takes time, it has influenced their strategic thinking, their messaging and many practical aspects of their work.

We now wish to roll out this vision much more widely. We invite YOU to take it on board and implement it within your own organisation and work.

You can access the new document ‘Dementia and Hope’ here . It sets out our starting point and the key benefits of the approach. It addresses many frequently asked questions (FAQs) and provides suggestions on how to embed ‘Dementia and Hope’ into your organisation. There are also many personal stories and examples of how ‘reasonable adjustments’ can and should be made for people with dementia. At the end (on Page 60) you will also find links to several films which we hope you will watch with your colleagues.

Do let us know your response to the vision and what you decide to do to make it reality. This is something that can unite us all!

Philly Hare
Co-director, Innovations in Dementia

The wonderful folk at Mindcare YODA adding their voices

As we look back over the last 10 years, there’s a lot to think about.

….but probably the words that most readily  spring to mind aren’t the ones we would have imagined when we started.

Warmth

Friendship.

Love.

None of which lend themselves to the usual metrics of evaluation. What’s the score on the love-ometer?

But we see it every day in our work with people with dementia.

So when I was asked to put together a piece of music celebrating DEEP, it was to this that I turned.

My main inspiration came from a Dementia Diary recorded by Dory, in which she reads from the wonderful “The Boy, the Mole, the Fox and the Horse: by Charlie Mackesy.

You can hear Dory’s Dementia Diary here:

https://dementiadiaries.org/entry/14249/dory-reads-chapter-4-of-the-boy-the-mole-the-fox-and-the-horse/?highlight=horse

These words in particular captured so perfectly what for me has been the most amazing thing about DEEP:

“Sometimes I feel lost,” said the boy.
“Me too,” said the mole. “But we love you and love brings you home”

“You fell, but I’ve got you,” said the horse.
“Everyone is a bit scared,” said the horse.
“But we are less scared together.

What beautiful words, especially:

“I’ve Got You”

It’s the support, encouragement, inspiration, solidarity, warmth, friendship and love between people with dementia that defines the very essence of DEEP for me. It’s been the most remarkable, largely unmeasurable, and absolutely uncontainable outcome of all.

It’s for this reason that ‘I’ve Got You’ become my inspiration, and working title for the music.

I’ve been working with Chris Norris and Paul Hitchmough to put together a musical celebration of DEEP.

They have both provided musical inspiration and the bedrock of the piece.

Not only that, but 80 individual people with dementia have also contributed with audio and video recordings of “I’ve got you’

Not only that but a mass meeting in Northern Ireland all saying it in perfect unison.

…..not only that but three singing groups have lent their lungs to the cause.

You can watch ‘I’ve Got You’ here:

Please share as much as you can….

Now where did I put my Love-ometer?

Steve Milton
Co-director, Innovations in Dementia

It is 10 years since the DEEP network emerged from an important piece of scoping work by the Mental Health Foundation.

Throughout 2022 we have been celebrating this significant anniversary with people from across the DEEP network. We have been celebrating and honouring DEEP’s many voices and achievements. Across the year there have been 17 in-person events, ranging from tea parties to country dancing to accessible bike riding, as well as conferences and meetings. You can watch a variety of films that capture moments of DEEP connections on our special anniversary website.

DEEP stands for Dementia Engagement and Empowerment Project. It is not an organisation, but a network of over 80 independent groups of people with dementia across the UK. DEEP engages and empowers people with dementia to influence attitudes, services and policies that affect their lives. There is a power that comes in connecting to each other – people with dementia shoulder to shoulder, initially in their local group, but magnified when they stand together as the DEEP network.

“We all have the power to influence and change what happens in the dementia world: in our home, or street, our town or our country.”

DEEP started life as a one-year scoping project in 2011, funded by Joseph Rowntree Foundation. The aim was to find out how many ‘involvement groups’ of people with dementia there were in the UK. We also wanted to know how the groups worked. 17 groups and activities were counted at the end of that year.

From 2012-2015 the DEEP network started to take shape, hosted by Innovations in Dementia and with funding from Joseph Rowntree Foundation (and Comic Relief from 2013). Groups were supported to be in touch with each other – to share ideas and good ways of working. A national user movement of people with dementia was being built. By 2015, DEEP consisted of 50 groups.

The next phase of DEEP (2015-2019) saw a period of growth to over 80 member groups, with the efforts of Rachel Niblock and Paul Thomas, who took on development roles with DEEP. Until 2019, DEEP was funded by Joseph Rowntree Foundation, Comic Relief and Life Changes Trust (for work in Scotland).

Click the image below to view it full size and zoom to enlarge.

In this fourth and current funding period, we are delighted to be supported by the National Lottery Community Fund until the end of 2023. We were also delighted that Rachel Niblock continued in her role as DEEP co-ordinator, now for the whole of the UK.

In this phase we are much more explicit about the importance of connecting voices of people with dementia to achieve influence, social change and peer support via the marshalling of human stories. DEEP is not top down, rather knowledge is generated by people with dementia. It is grounded in people’s lives, rooted in rich values and can disrupt the status quo, changing understanding of life with dementia. With the DEEP network we have been exploring ideas of power and control and how people with dementia can be in the driving seat.

We must thank wholeheartedly the different funders of DEEP who have supported the collective potential of people with dementia. They have:

• Supported more people with dementia to have their voices heard and to find new ways to do this
• Ensured these voices can have maximum impact in the places where they can do the most good, not least between people with dementia
• Placed more control in the hands of people with dementia themselves

In 2020, along with the rest of the world, DEEP faced the challenge of the Covid-19 pandemic. DEEP was buffeted by the storms that arrived, but relied on its values and foundations to withstand, adapt and spread – just as the “Mighty oaks from little acorns grow.” [14^th century old English proverb].

Many groups have captured their stories in visual representations of trees – creating collective and connected stories of hope, strength, shared values and belonging.

This is the Forget Me Nots story:

And this is the DEEP Oak Tree –

The DEEP tree is made from a fallen branch of a dying oak tree.

The tree has been brought back to life with a collage of inspirational stories from Our DEEP News.

The leaves of the DEEP tree are made up of the DEEP Values – Hear us, See us and Join us.

In the style of ‘Kintsugi’ the golden threads embrace all our flaws and imperfections.

The acorns are the golden nuggets, nurtured, nourished and shared.

The lights reflect that passing on of the light and the flame to one another.

The golden roots reflect how much goes on beneath the surface and behind the scenes. How the seeds we grow, and their roots, reach further than we will ever know or see.

Rachel Niblock UK DEEP Coordinator

You can read about DEEP’s reaction to Covid-19 in “Dementia voices, hopes and opportunities: testimonies from people with dementia during the Covid-19 pandemic”

This year has been magical. Lots of DEEP Moments have added rich layers to the stories of DEEP from the last 10 years.

Do join us for our on-line festival from 5^th – 9^th December 2022 to mark the end of our anniversary year. There is a packed schedule of talks, films, podcasts and discussions that we hope will be a legacy to the work and impact (so far) of the DEEP network. To register for an event click here.

 “It’s about our right to have a say, have a voice to influence what matters to us as people living with dementia.”

Rachael Litherland
Co-director, Innovations in Dementia

One of the most powerful things we can do as human beings is to use our voices.

We use them to tell our stories, make our opinions heard, and to stake our place at the human table.

In the last decade or so, people are getting their voices heard more widely and more loudly than ever, largely due to social media.

One might argue that this is both a good thing and a bad thing. Everything we do in life has the potential to tip the world a little towards good, or a little in the other direction. Social media provides ample opportunities for both.

Either way, the extent to which our voice is heard is often a marker of our status, of our ability to shape our world and of our right to a place within it.

For many, the onset of dementia can mark a sudden change in the way their voice is heard.

Dementia can of course make it more difficult for people to express themselves. But voices are hushed and dampened by factors that go well beyond the physical impairment of brain function.

There remains a widely-held assumption that people with dementia are unable to have their say, and that others must therefore speak for them, or about them.

Many carers do an outstanding job of supporting people with dementia to articulate their thoughts, especially when and if they begin to find communication more difficult.

However, it’s also true that people with dementia often feel that family members and friends step in too soon, or too early. While this may be with the very best of intentions, it can leave their voices diminished or unheard.

Older readers may recall the long-running BBC disability programme “Does he take sugar?’ It ran for 20 years, before coming off air in the 1990s.

The programme was focused on those with a physical, sensory or learning disability.

In 2022, asking the companion of someone using a wheelchair “Does he take sugar?” would seem to belong to another age.

Does this hold true for people with dementia? Hmmm…..…

Many people with dementia will have their own “does he take sugar” experiences, often on what seems like a daily basis.

It’s not all doom and gloom though. We have become more accustomed to seeing and hearing people with dementia telling their stories in the media, and in charity campaigns and publicity. Compared to even ten years ago, it would appear that people with dementia have found their voices in far greater numbers.

But very often these voices are part of someone else’s narrative or agenda, be that news editor, charity fundraiser or campaigner.

What about the raw, unedited voices of people with dementia, talking on their terms about what they want to talk about?

Dementia Diaries, which is relaunched this week after a major rebuild, gives that voice to people with dementia.

Since it was launched, it has amassed more than 3000 audio diaries from people with dementia. Unedited, raw, and very real.

The Diarists do talk about their experience of living with dementia, but very often they talk about anything but dementia. They talk about their day, they express their opinions on everything from politics to the arts.

The diaries give a unique insight into not just dementia, but the interior worlds of those living with it.

For this reason Dementia Diaries has served as a treasure trove of information and insight for educators, researchers, policy-makers and journalists.

……but most importantly, for others with dementia.

Dementia Diaries offers a window into the lives of people who have been living with dementia, in some cases for a very long time. For someone facing dementia in the early days, they are a brilliant reminder that life goes on in all its glorious technicolour variety.

Listen to this diary from Shelagh, who used Dementia Diaries to show someone recently-diagnosed a glimpse into life beyond diagnosis:

“You gave us hope.”

Indeed you did Shelagh, as does every single Dementia Diarist who shares their worlds with us.

During lockdown we started a weekly ZOOM for diarists. This has added another dimension to the project, and created an incredibly close, relaxed, supportive and welcoming group of people with dementia. The love in the room is palpable, and most times it’s a great laugh in the company of people who just ‘get’ each other in a way that few others can.

Dementia Diaries is part of our family of initiatives under the Dementia Voices banner, and one which we are immensely proud and privileged to be able to offer.

We want to reach out to even more people with dementia, to make sure that their voices are included and heard, and to help to change the way people think and feel about dementia.

As Tommy Dunne says:

“Dementia Diaries is very, very important to me as a person with dementia. Because if people can listen to real people with dementia speaking then it will go a long, long way to help stop people making the wrong assumptions about a person’s ability to communicate just because they have a diagnosis of dementia.
Listening to my peers’ stories actually allows me to draw strength from them when I’m feeling down. They also inspire and uplift me. Dementia Diaries is like having a friend that’s always on the end of the phone, always there with a story, the type only my peers can tell.”

Find out more about Dementia Diaries, how to become one, and how to volunteer as a transcriber here: www.dementiadiaries.org