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

My Life, My Goals – a resource to give hope to people with dementia

In January 2021 the UK was in a lockdown due to Covid restrictions. At the same time a team of people with dementia began work – to create a new resource to help newly diagnosed people with dementia identify their own goals and strategies.

Download My Life, My Goals by clicking on the images below. You can download an interactive version or a print version:

You can also download the My Plan section of My My Life, My Goals by clicking on the image below:

The idea for this resource came out of some research about cognitive rehabilitation. Cognitive rehabilitation is a type of therapy that can make managing everyday activities easier for people in the earlier stages of dementia. It is often delivered via sessions with a therapist. Cognitive rehabilitation can help people to identify and achieve, in a step-by-step way, the goals that are important to them. You can watch a short animation that explains cognitive rehabilitation here:

Our job was to take some of these research ideas to create a resource that people recently diagnosed with dementia could use themselves.

This was no small task – we couldn’t meet face-to-face and we didn’t really know much about cognitive rehabilitation!

Nine people with dementia, Linda Clare and Ola Kudlicka from University of Exeter and Rachael Litherland from Innovations in Dementia worked together over eight months to talk, learn, share, translate, write and design. One of the advantages of lockdown was that we could include people from all over the UK and overseas. We quickly stopped talking about cognitive rehabilitation and began to talk about our wishes and desires –the things that bring joy to our lives and make our hearts sing.

“It is my life. It’s not your life. It’s my life. It’s the goals I want to set and the goals I want to achieve.” – Alison

And there we had it. The title for this guide. My Life, My Goals. A guide we wished had been available when the nine members of the team were being diagnosed. A guide full of hope:

• Hope that there are ways to manage difficulties
• Hope that there are solutions to problems
• Hope that you can live a good life with dementia

My Life, My Goals is full of ideas, stories, strategies and solutions to help you think about your goals. You will learn about:

• How to identify a goal
• Deciding on your goal
• Getting in a positive frame of mind (leaving stress behind)
• Choosing a method that is right for you
• Creating your own plan

You do not have to read the guide from beginning to end. Each section is colour coded to help you find the information most relevant to you.

We hope you find the guide easy to use and it inspires you to set your own goals.

“When you feel very down you drop into a deep valley. You need to find your way up. You cannot find your way up unless you can see a light at the end of the tunnel. This resource can be your lighthouse.” – Emily

Watch a series of films to accompany My Life, My Goals below:

Rachael Litherland
Co-director, Innovations in Dementia

I often describe my job as ‘working with and alongside people with dementia’. It’s a sort of catch all phrase but in this blog I would like to share an example of exactly what that means in practice partly as a shameless plug of what we can offer, but principally because of the significance of what has been produced by a small group of people living with dementia in the East Riding of Yorkshire and the implications of it.

At Innovations in Dementia we have been working over the last 12 months in the East Riding of Yorkshire on a commission jointly funded by the East Riding of Yorkshire CCG, the East Riding of York Council and the Humber Teaching NHS Foundation Trust. The Commission included the design, development and delivery of an East Riding Good Life With Dementia course.

I met with a group of 3 people living in the East Riding, already diagnosed with dementia and keen to share their experience to help others adjust to living with a recent diagnosis of dementia. After just a few meetings we had the bulk of the new course content and themes.

Having recruited 5 people recently diagnosed across East Riding we delivered the whole Good Life course via zoom over a 6 week period. Our three course designers were the course tutors and they co-facilitated each session. What followed was a range of connections and a feast of shared learning.

The course answered the many questions that people recently diagnosed with dementia had about their diagnosis, about the future, about the implications of it on their lives, relationships, and on their confidence and their rights to continue as valid and valued members of their neighbourhoods and communities.

We knew it would answer the questions people had because it was put together by local people with dementia sharing the key messages they wanted to give to people going through diagnosis, drawing on their own experience having gone through that same local process. Who better to learn from than those who have been there and got the T-shirt!

As a whole group we produced a post diagnostic resource pack specific to East Riding. As well as key important local information and numbers to contact gathered from the course, it contains a powerful ‘manifesto’ of what local people with dementia expect and demand; a list of what was learnt on the course; and an invaluable must-read insight into ‘what my dementia means to me’ from one of our course tutors, Bob. Please do read it here

Local memory services and providers have requested this resource. They realise that, however well-intended, much of the information they currently provide themselves has been created by them for others – essentially a best guess.

This resource, however, has been created by, with and alongside people living with dementia themselves, and has been born of their real experiences.

As well as being invaluable itself as a resource, it is also a clear example of the power and capacity of people with dementia to create together any resource in dementia.

We can’t continue guessing what people might want.

People with dementia hitherto have been an untapped, underused resource. As we emerge from lockdown with huge bottlenecks across dementia services,

• people with dementia can lead on the creation of the whole dementia learning and development strategy in their localities;
• people with dementia can lead on investigating their own research questions;
• people with dementia can help build local dementia strategies;
• people with dementia can shape the development of services that meet their needs, having previously been passive recipients of care originally and primarily designed to provide a break for carers.

I think this is a real ‘moment’ in time (can anyone hear Whitney Houston?). How great that East Riding is at the heart of it! If you want to follow their lead contact Damian@myid.org.uk – that’s the shameless plugging bit!

The Good Life course in East Riding has also led to the creation of a new group of peers with dementia, who are now meeting regularly – the East Riders! Thanks to the forward-thinking collaboration across health, social and third sector providers throughout East Riding, we shall be co-creating more Good Life courses – and consequently more groups of peers who can form a growing network of active, engaged people with dementia across the region.

The possibilities are endless and it starts with just a listening ear to the dementia voices. Listen here to the DementiaVoices!

Damian June 2021

What My dementia means to me.

If you read one thing today make sure it’s this. First, here’s a little context.

Over the last year a new Good Life With Dementia course was created and delivered BY local people with dementia FOR local people more recently diagnosed with dementia in the East Riding of Yorkshire. It was a great success and we felt we had to share one part of a fantastic post diagnostic resource pack that the group produced together. It is a piece written by course tutor, Bob, East Riding resident and also member of York Minds and Voices – a group in the DEEP network. Put your feet up and enjoy this moving, humble and humorous piece from Bob and listen to the message in there. Over to you, Bob.

WHAT DOES MY DEMENTIA MEAN TO ME? – BOB LONG 2021

Hmm! That’s a big ask!

My first thought (after, of course, considering that, in spite of my ‘inner wishes’, I have to acknowledge a diagnosis of dementia!) was that, progressively, I have become less able to be as ‘comfortable’ in respect of making proactive positive decisions. Hence I am more inclined to ‘withdraw’ in circumstances where once I would have offered a response around personal feelings, advice, opinion, thoughts, reflections, perhaps counselling.

I suggest that may be an ‘outcome’ of a long and very happy Primary School career! My teaching ‘mantra’ was, simply, ‘when you speak I will listen, I respect what you say’. (This is a line from our school song ‘This Is Our School’ which was sung regularly. *My words set to music by a very talented member of staff.

Anyway, I have now had enough experience of personal ‘inappropriate’ behaviour to recognise that I need to be a careful listener before I respond to other people’s thoughts, ideas, passions, decisions etc. before ‘expounding’ my views! I guess that, generally, (Sue may not agree!) this is why I ‘walk behind’, not necessarily in fear of my own integrity (and personal wellbeing) but, (this is a hopeful ‘belief’!) that I don’t embarrass the company around me! I suppose, to some extent, that’s a ‘cop-out’ and, on reflection, enhances the ‘analysis’ and definition of my dementia.

Who is kidding who?!

And the positive? Mmm! Not many in terms of returning to the ‘old’ Bob! However, certainly since I’ve ‘come out’ (!?) I am more easy on myself and the ‘understanding’ displayed by my family and friends has ‘soften’ and grown!

Certainly there are ‘bad, sad’ bits and, in respect of the times I ‘default’, I am always later aware of its effects on and responses from my loved ones (so sorry Suzie; your patience is incredible!) when the ‘clouds’ roll over and I lose my ‘me’! That ‘me’ is now much too often! From the simple ‘where did you put it?’ to the ‘that’s got to be done again!’

Anyway, that’s my ‘today’ reflection. It’s been ‘cathartic’ in terms of ‘emptying my head’ and, having read it to Sue (and her not sending me off to try again!) I am happy to have shared it with you.

I’m still Bob. Just be patient, tell me you love me and, politely, remind me that I’ve forgotten to put my trousers on.

Thank you. Bob.

Dementia organisations united in One Dementia Voice call on Government to avert hidden catastrophe – allowing family carers to visit Care Homes

People with dementia have been hardest hit by the recent COVID 19 pandemic, from the number of people in care homes who have died from coronavirus  to the people with dementia living at home lacking guidance and isolated from social contact and for many, that has affected essential health and care support. The evidence is stark – data shows a 52% surge in deaths among people with dementia since lockdown, beyond those caused by the virus.

Therefore, for the first time, the UK’s leading dementia organisations, John’s Campaign, Innovations in Dementia, Dementia UK, TIDE (Together in Dementia Everyday), Young Dementia UK, Alzheimer’s Society and Alzheimer’s Research UK, have united to speak as one voice on behalf of the millions who have been adversely affected, calling on the Secretary of State and the PM to grant a designated family carer access to care homes in line with ‘Key Workers’ – care home staff. This must include safe, regular and repeated testing, so they can visit care homes safely, and provide the care and contact so desperately needed. Every one of these organisations urges for the hidden catastrophe to be averted, to avoid further tragedy.   More must be done to help those with dementia and their carers.

Here are just some of the stories we have found on how people have been affected by the pandemic.   The immediate cessation of all support for carers who live at home led to so much confusion for Jackie’s husband who had early onset dementia and had to go into a care home at the age of 56. Jackie’s life had already been turned upside down as she had had to give up her job to look after her husband, who has now unexpectedly had to move into full time care. Watch Jackie’s story here https://www.tide.uk.net/jackies-story/

The lockdown of care home to visitors  means people have been unable to visit their loved ones. The charities are raising awareness that, for people with dementia, this is not only emotional contact for distressed people with dementia, who are confused as to why visitors aren’t coming and why staff are wearing equipment, but also essential care and the voice and memory that keeps people tethered to the world.  Mary from Wales who regularly visited her husband did not see him for 15 weeks. Mary worried that her husband might have forgotten her and wasn’t sure how he was coping; her story demonstrates how just one 15 minute visit gave her some reassurance https://www.tide.uk.net/mary-mitchell-lockdown-blog-2/

Yet still the Government have refused to acknowledge care homes in any of the lockdown relaxation rules. Guidance has been issued in Scotland, Wales and Northern Ireland – but still nothing in England. There have been examples of care homes who have tried to do their best to adapt to the situation, for example introducing virtual visits. We applaud these care homes who have adapted to a demanding situation. Unfortunately this approach does not work for all.  Natasha’s story explains why the virtual visits were not enough for her mum https://www.tide.uk.net/natashas-story/

What Next?

We have joined together to form ‘One Dementia Voice’ and have written a letter to the Secretary of State For Health and Social Care  to demand action for people with dementia.

Philly Hare
Co-Director, Innovations in Dementia

“Do you see what I see?”

Throughout early 2020, members of Ashford Phoenix, Pathways in Bradford, peer support group at Beth Johnson Foundation and SUNshiners worked with film- makers from Biggerhouse to make 22 films. With funding from The National Lottery Community Fund we made a series of films about the DEEP network.  There are four, longer, films about each of the groups and 18 snapshot films of groups members.

These are films of DEEP moments in time– connecting together in a patchwork of stories and messages and portraying the importance of peer support, the connectedness between people with dementia across and the diversity of lives with dementia.  The films are joyful, sad, honest, funny and wise. They are the films that people wanted to make about themselves. They are  about the trust, safety, confidence and laughs that being a part of a peer group in the DEEP network brings; they are also stories of group members – their joys, relationships, loves, struggles, friendships and where they find themselves in this world of dementia. Their stories are all different, with dementia in the foreground and background, sometimes at the same time – just like dementia.  “You don’t see what I see”, reminds Tracey – these are films that provide a window into people’s worlds.

People with dementia took on roles as film makers and directors – writing scripts,  operating (and stroking!) fluffy microphones, managing sound, editing footage and repeating and repeating (and repeating) takes. The end films are not illusions where the film making process disappears – you will see the makings of the films themselves within each film. The making of the films has been as much a part of the story as the films themselves: “We were finding our way in this maze of the unknown” said Dot.

The filming was done before Covid 19 impacted. It has been bittersweet working at a distance, sometimes by Heath Robinson techniques, to edit, finalise and view the films. Since March 2020 people with dementia have not been meeting in their DEEP groups but their sense of belonging has not gone away. Many groups have surprised themselves learning how to use Zoom and What’s App to see each other. There have been garden gate chats, deliveries of cream teas, phone calls, virtual walks and craft sessions, postcards and letter writing.  There is a sadness and concern about not be able to meet face-to-face for a long time to come.

So, first and foremost, we hope these films help to nourish DEEP groups until a time when we can all meet again. As John says; “In my group I can be myself and feel safe. My life is fuller and richer.” This is reiterated by Maq: “I’m in but looking out. My inner feelings are only known by people going through the same thing as me. They see the true me. ”

Secondly, as Gordon says: “I hope the films will reassure people who are newly diagnosed” and that other people understand more about dementia in people’s lives.

So, come on into people’s inner worlds. You will watch films about memory, stigma, word-finding problems, difficulties with spatial awareness and perception,  intertwined with tales of mermaids, super-powers, music, sleep, horses and poets. Make some popcorn and enjoy!

You can view all of the films here https://www.dementiacreatives.org.uk/deepmoments/

Rachael Litherland
Co-director, Innovations in Dementia