Group living in Japan

I recently went to Japan and was part of a study tour of group homes in one area in the north – a region which is still recovering from the devastating tsunami 6 years ago.

 

There are thousands of group homes in Japan. Although all different, they do share many common characteristics. Here are some things which struck me:


They are small, with 8 or 9 residents.

 

A typical home has a central, multi-purpose, open-plan living area. There is an open kitchen at one end, and bedrooms clustered round. The bedrooms and gardens seemed very small to us – though this is normal in Japan. The spaces looked rather cluttered and messy – but I realised that does also feel quite homely.

 

Care staff don’t wear uniforms and are very flexible in what they do.

Staff and residents do many tasks together: caring, activities, cleaning and cooking. There is a relaxed attitude to ‘risk’ – big knives are used to prepare veg, and scissors to cut flowers. Residents have access to the kitchen when they are helping prepare meals.  Apparently regulations are much more low-key and inspections much less frequent than in the UK – though this could have pros and cons of course.

 

Residents pursue traditional hobbies – often with one-to-one support. Arts, crafts and family photos were very visible around the homes – including origami and calligraphy. Japanese culture, festivals and seasons are very much part of group home life: we saw fish banners for Boys’ Day, and a cherry blossom collage for spring.

 

Some group homes are mixed: people with dementia, learning or physical disabilities all together. Some people just come in for daycare, respite, a meal or a bath.

 

Residents treat the homes very much as theirs. They welcomed us with Scottish flags, brought us tea, cut flowers for us, and assembled extra chairs.

 

Families and friends came in and out of the group homes. A neighbour brought in cherry blossom from his tree. He and others pop in and out regularly. Staff can bring their children. A harpist was visiting one of the group homes.  She played and sang, first to the whole group, then to a lady who can no longer leave her bed.


We were invited to an evening bar, set up in a spare bedroom! Staff, residents, families, children and neighbours shared good food, drink and chatter.

 

Everyone is encouraged to keep moving and to go outside if possible. Pets add to the fun – one home had a very excitable billy goat! Residents often go out into the community too. They visit family shrines, help with street clean-ups, join singing lessons, and go to the shops. One lady we met makes soup for a local community café every week.

 

People dont usually need to go into hospital at the end of their lives. Both staff and other residents help with their care. One resident was sleeping on a bed in the lounge in the daytime, while a carer worked quietly at a table nearby.

 

In June, we will be presenting our impressions of Japan – alongside other presentations about small-scale homes in Canada and Australia – to a group of people with dementia in Scotland. We will work with them to reflect on how the group home model might influence future development in Scotland.

 

One of those taking part in the study tour (and helping hugely with translation) was Mayumi Hayashi, currently an Exchange Fellow at Edinburgh University. She has written an excellent paper on this, do read it by clicking here

Why viewing dementia as a disability could be helpful to everyone

Nobody would doubt that dementia is debilitating. This constellation of incurable diseases causes people to lose abilities which require concentration and planning. The personality of loved ones may change.  They may develop depression and confusion. We are all familiar with this dominant representation of dementia, and frightened out of our wits by it.

 

Dementia is a disease, but it’s also a social experience.  People with dementia are, in my view, disabled people, alongside the eight million other disabled people in UK.  This may be an unusual way of looking at things.   But I want to argue that viewing dementia as a disability could be helpful to everyone.

 

Disabled people are all different. Many people with impairments or illnesses do not even identify as disabled.  No doubt some people with dementia won’t like the idea of being labelled disabled.  If you’ve got one stigmatized identity already, you aren’t necessarily going to welcome another.  But it may help us change our attitudes and our policies, when we realize that the 50 million people with dementia worldwide have human rights which should be respected.  By working together, perhaps everyone’s life can be improved.

 

In the last few decades, we have seen wheelchair users, blind people, Deaf people, and people with learning difficulties and other impairment groups unite to demand a better deal from a government, and more acceptance from society. Disability is now seen not just as a health condition, but as a matter of equal opportunities and inclusion. But when it comes to dementia, we are still thinking in terms of disease and tragedy and passivity.

 

This can be seen in our language. Words like ‘burden’ or ‘demographic time-bomb’ or ‘suffering’ or ‘victims’ serve to pathologise people with dementia.  It’s as if they have a double difficulty – not just as people who have a nasty disease, but also subject to the fear, ignorance and negativity of the rest of us.  The psychologist Steve Sabat calls this ‘malignant positioning’.

 

If we were to begin thinking of dementia as a disability rights issue, what would be the implications?   I think we need to consider the ways in which society disables people with dementia.  How do attitudes, environments, and policies make life harder for people with dementia and those who care for them?   The world has become more complex, in ways that must make it difficult for people with dementia to engage with services in the public and private sector.  Technologies like mobile phones and internet banking are increasingly confusing, demanding passwords and interactions that may disable people with cognitive impairments.

 

How many residential institutions treat people with dementia with respect and dignity? How many people with dementia are victims of neglect, violence and abuse?  We know there are abuses in the UK. In a world where austerity dominates, it may not seem a priority to some hard-pressed local authorities to ensure that people with dementia enjoy the best standard of care.  Worldwide, there are some appalling human rights violations against people who cannot speak up for themselves, and have nobody to speak for them.  Some people with dementia are simply drugged into submission.  The OECD has concluded that dementia receives ‘the worst quality of care in the developed world’.

 

We need to reform our language, too.  Even a phrase like ‘dementia friendly’, which sounds positive, could be considered patronizing and inappropriate.  The implication is that the solution is for people without dementia to be kind and considerate and welcoming of people with dementia.  But if part of the problem is socially-imposed barriers and even human rights violations, then the term ‘friendly’ might be judged an inappropriate response which we would not use for other minorities.    Why don’t we talk about rights?   Rather than ‘dementia friendly’ communities, we need ‘dementia enabling communities’.  We don’t just need ‘dementia friends’, we need ‘dementia allies’.

 

Once we see how social contexts are often oppressive to people with dementia, perhaps we can begin to understand how some of the behaviours of people with the condition might be a reaction both to having a severe degenerative disease, but also to being infantilized and disempowered.

 

Dementia advocate Kate Swaffer talks about ‘prescribed disengagement’, the way that as soon as someone gets a diagnosis, they are advised to stop work, hand in their driving licence, and prepare for an early death.  Once someone has the disease, like a medieval leper, they may be shunned by friends and colleagues.  Family members struggle to cope, without adequate support.

 

I think If we reformed the way we treated people, and removed barriers in their environment, perhaps they would maintain functioning for longer. If we promoted joint decision making rather than substitute decision making, we would do better at ascertaining the will and preference of people with dementia.  Advance care planning can mean that, even with advanced dementia, the wishes of the individual are being considered.

 

In law, dementia is already covered by disability discrimination legislation.  At the domestic level that means the Equality Act, and at the international level the equivalent is the Convention on the Rights of Persons with Disabilities.  Both these laws talk about reasonable adaptations that can be made to ensure that people with dementia or other disabilities are included, not excluded.  How can we make public services more enabling for people with dementia, and their families, to reduce anxiety and agitation?  A quarter of people in hospital have dementia: what are we doing to make their experiences easier?

 

There are lots of positive interventions with people with dementia. It’s not just a matter of drugs and locked wards.  For example, there is a wealth of arts work with people, ranging from reminiscence work and music, to poetry and dancing.  In these ways, the individuality of people with dementia is brought to the fore, and patients can have more genuine and rewarding interactions with family and staff members. Interventions like this are showing how it is possible to live well with dementia.  The more we develop effective responses, the less we will have to fear a condition which will affect one in three of us in our later years.

 

If you agree that dementia is a human rights issue, you might ask, where are the dementia rights activists?  Everyone remembers the writer Terry Pratchett, author of the Disc World Novels, who campaigned for more medical research and more respect for people with Alzheimer’s and other conditions.  But Terry Pratchett was unusual in living for eight years with the disease.

 

Many people do not have many lucid months between getting the first diagnosis, and losing cognitive powers that permit self-advocacy. It has generally been thought that people survive for four to five years after diagnosis.

 

But Pratchett – thankfully – is not a lone voice.  The Scottish Dementia Working Group and DEEP (the Dementia Engagement and Empowerment Project) have demonstrated how those with dementia can effectively unite and advocate.  Dementia Alliance International are a global coalition of people with a dementia diagnosis who have been trying to get the UN, the WHO and others to accept that the Convention on the Rights of Persons with Disabilities applies to them too.

 

There is growing evidence that people can live much longer with diagnosis than was previously thought, particularly where they have mild forms of dementia.  Because people are getting their diagnoses earlier, they are living longer with dementia, and their voice is getting stronger.   We need to listen to those voices.  So here I want to acknowledge the input of my colleague Peter Mittler, a retired special education professor diagnosed with dementia, who has contributed to what I am saying.

 

We are not the only ones having these thoughts.  In recent years, the Mental Health Foundation and the Joseph Rowntree Foundation have each published reports arguing that the world of dementia has much to learn from the disability rights movement.  But I think we can go a lot further.  I am not sure it will ever make sense to talk of Dementia Pride. It will never be easy to have dementia – or Motor Neurone disease or Parkinson’s, for that matter.  We cannot create a world in which dementia is an irrelevant difference.  But we can build a world in which it is possible to live better with these conditions.

 

We are too inclined to write people off, once they have a diagnosis.    When we do that, it is we who have the memory problem, because we have forgotten that people with dementia are human beings, with rights and dignity to the last.

My friend Brigid and I – in Stockholm and Kent

Introduction

l’m 72 years old, married with two children and two grandchildren. I live in the garden of England, Kent, by the North Sea. I was diagnosed with vascular dementia in 2012. Writing about dementia helps me live with it.

Snow is falling in Stockholm.  A pure white covers this beautiful city. Trees, streets, roofs of houses and tops of cars are white. The houses, painted in colours from ochres to brilliant yellows, reflect in the white snow and make us feel less cold.

Our daughter Cláudia and her baby boy Tristan take the ‘oldies’ for a walk in the fresh air. Tristan is very happy because he is next to his mother’s heart and feels so warm and safe.

After our walk we are a little tired and go to a coffee place. There, other people are having their hot drinks and talks with their friends. Quite noisy, I think, but Tristan loves it…

so many voices and lights is what he likes. He is learning about the world everyday, everywhere. His trusting eyes look around, and he smiles. We say “hello Tristan” and he smiles, while his feet go up and down.

Like Tristan I used to love meeting new people. I would ask them what they were reading, listen to them and learn from their readings. Those were the days!

These days, with vascular dementia, I’m the opposite of Tristan. I can’t stand noise. I don’t trust people like I used to. While he is learning everyday, I constantly forget what I hear.

Today, after our walk in Stockholm, I started understanding my friend Brigid, who has Alzheimer’s. She lives in Kent by the North Sea, where every morning the sky is like a most beautiful watercolour. She likes to walk everyday to the sea and watch the waterfront, as if she were in an art gallery. She loves it! So calm…no conversation.

What she loves best though is staying at home, surrounded by the photos of her family. From grandparents to grandchildren, and especially the ones of her children when they were babies like Tristan. She feels safe there.

At last I’m starting to understand and accept her.

Carolina Young

‘Continuing to be me’: Recovering a Life with a Diagnosis of Dementia’

At first sight ideas about ‘recovery’ and ‘dementia’ may seem a contradiction in terms.  However, such discordance exists only if ‘recovery’ is seen in the clinical terms of ‘cure’.  Ideas about recovery emerged from the experience of people who themselves faced the challenge of living with mental health challenges and describe the process of rebuilding a meaningful, valued and satisfying life[i]. The process of recovery they described is not about ‘recovering from an illness’ but ‘recovering a life’: “a way of living a satisfying, hopeful and contributing life even within the limits caused by illness … a deeply personal, unique process recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of illness.” (Deegan, 1988)

Although initially developed in relation to younger adults living with mental health challenges, their relevance in relation to older people and those living with dementia is increasingly being recognised, initially by Bob Woods[ii] in 2007 and subsequently by people like Laura Hill and Stephanie Daley and their Colleagues[iii]. A diagnosis of dementia is, for most people and those who are close to them, a catastrophic and life-changing event: people living with dementia also face the challenge of living a meaningful, valued and contributing life.

Recovery is not a ‘model of care’, or something that services do to people.  It describes a personal journey of discovery: growing within and beyond what has happened and ‘living well’.  The question for services and supporters is whether they assist people in realising their possibilities.  Ideas about recovery challenge traditional ‘clinical approaches by replacing a focus on deficits, dysfunctions and problems with a focus on strengths and possibilities.  However, much work on recovery views the journey in purely individual terms.  This is a mistake[iv].  Recovery may be a personal journey, but it is not a journey travelled alone.  It is a journey travelled in the context of a family, a social network, a community, a culture, a place … all of which define the meaning of the diagnosis and the resources and possibilities for rebuilding a meaningful, valued and satisfying life.[v]

In this context the rights based approaches founded on a social model of disability[vi] that have developed in parallel with ideas about recovery are important.   Too often, within the prevailing clinical framework, people living with dementia are presented as ‘victims’ or ‘sufferers’ who are unable to speak for themselves, have little useful to contribute and are therefore denied a voice[vii].  We need to think about recovery in the context of a rights based approach rooted in a social model of disability: start from the perspective of people living with dementia as citizens with rights who are deserving of respect, and focus less on ‘care’ and more on ‘opportunity’ and the support/adjustments that people need to use their skills, do the things they value and be a valued part of our communities.  Such rights are recognised in the GB Equality Act and the United Nations Convention on the Rights of Persons with Disabilities, both of which explicitly include dementia.

The relevance of a rights based social model of dementia was first explicitly recognised by the English Care Services Improvement Partnership ‘National Older People’s Mental Health Programme’ in 2007[viii], but most importantly by the movement of people with a diagnosis of dementia themselves, including the work of the Dementia Policy Think Tank: “The more we talk about and use the rights of people with dementia, the more our services, culture and attitudes will change for the better”[ix].

 

Based on the voices of people living with dementia and those who are close to them, this ImROC Briefing Paper – ‘Continuing to be me’: Recovering a Life with a Diagnosis of Dementiaaims to draw together and extend ideas about recovery and rights into a practical, informative and radical publication that challenges prevailing narratives and assumptions around dementia. Based firmly within a rights based framework, it explores the devastating impact of diagnosis, the search for meaning and purpose involved in making sense of that experience, and developing strategies/support that enable people with the diagnosis to do the things they value, retain choice and control over their lives and participate as valued citizens.  The importance of fostering hope/living positively, personal control, opportunity and participation – and ways in which these might be fostered – are explored.

While many things may be important in enabling people living with dementia to recover/retain a valued, meaningful and satisfying life, this requires that we change the narratives surrounding the diagnosis. From ‘victims’ to be pitied and cared for to valued ‘citizens’ with rights: rights to a voice, rights to participate, rights to the support and adjustments they need to do so, rights to dignity and respect. From images of dementia as ‘living death’ to ‘life’.  Life changes, but life goes on and that life can be a good life.

Please click here to view the ‘Continuing to be Me’ report.

Rachel Perkins, January 2017

 

An ImROC Briefing Paper, Rachel Perkins, Laura Hill, Stephanie Daley, Mike Chappell and Jane Rennison, 2016

Available to download free: https://imroc.org/resources/12-continuing-recovering-life-diagnosis-dementia/

[i] Deegan, P. (1988) Recovery: The lived experience of rehabilitation, Psychosocial Rehabilitation Journal, 11: 11-19. Chamberlin, J. (1977) On Our Own, 1988 edn. London: Mind Publications. O’Hagan, M. (2014) Madness Made Me. Wellington, NZ: Open Box

[ii] Woods, R. (2007) Recovery—is it relevant to older people? Signposts.12 (1), 2-3

[iii] Hill, L., Roberts, G., Wildgoose, J., Perkins, R. & Hahn, S. (2010) Recovery and person-centred care in dementia: common purpose, common practice? Advances in Psychiatric Treatment, 10, 288-298. Daley, S., Newton, D., Slade, M., Murray, J. & Banerjee, S. (2013)   Development of a framework for recovery in older people with mental disorder, International Journal of Geriatric Psychiatry, 28, 522–529

[iv] O’Hagan, M. (2002) Living Well. Openmind 118, Nov/Dec,16-17

[v] Perkins, R. (2015) Recovery: a journey of the mind and spirit, Clinical Psychology Forum, Special Issue on Recovery, 268, 38-43. Repper, J. & Perkins, R. (2012) Recovery: A journey of Discovery for Individuals and Services, Chapter  in Phillips, P., Sandford, T. & Johnston, C. (eds.) Working in Mental Health: Practice and Policy in a Changing Environment. Oxford: Routledge

[vi] Oliver, M. (2004) If I had a hammer: the social model in action. In: J. Swain, S. French, C. Barnes and C. Thomas, (eds). Disabling Barriers – Enabling Environments. London: SAGE.

[vii] McGettrick, G. and Williamson, T. (2015) Dementia, rights and the social model of disability, London: Mental Health Foundation

[viii] Care Services Improvement Partnership (2007) Strengthening the Involvement of People with Dementia, London: CSIP Oder People’s Mental Health Programme

[ix] Hare, P. (2016) Our Dementia, Our Rights, Exeter: Dementia Policy Think Tank and Innovations in Dementia CIC

The Impact of Dementia Activism

The DEEP network (see www.dementiavoices.org.uk) started nearly five years ago and is now the main UK network linking activist/influencing groups led by people with dementia themselves. Since 2012 the number of such groups in the UK has grown rapidly, from merely a dozen to over 80 at the time of writing (November 2016). The common link between all these disparate groups is that they want to make change through collective action – whether at a local, regional, national or even international level. But how are these groups faring in terms of making an impact together, what have they learnt in the process, and could this experience be useful to others?

These were some of the questions that the IDA project has been trying to answer. IDA (The Impact of Dementia Activism) commenced in January 2016 and Phase 1 will complete by April 2017. Funded through the ESRC’s Impact Grant, IDA is a collaboration between Edinburgh Centre for Research on the Experience of Dementia (ECRED), Innovations in Dementia (iD), the DEEP network and HammondCare.

The project aimed to:

  • collect experiential evidence from DEEP groups themselves on influencing and activism of people with dementia in the UK, and on its impact
  • share this learning with other existing and potential groups in the DEEP network and beyond
  • work with them to speed up and achieve impact, and find ways to capture the impact they are having
  • produce outputs that help other groups to have impact.

Three DEEP groups agreed to work in partnership: EDUCATE Stockport, East Kent Forget Me Nots, and SURF Liverpool. In February 2016 I visited each of the groups to discuss and record their experiences of working collectively and to identify the learning from this process that they felt would be useful to other DEEP groups.

We then held a 24-hour residential event in London in March 2016, with 10 members of the 3 DEEP groups, plus their supporters (family members, group facilitators and members of the project team). The groups discussed how they would like to go forward, and what they felt would be most useful to the DEEP network as a whole. It was agreed that this phase of the project should focus on co-producing four main outputs:

  • a guide on ‘Making an Impact Together’
  • a very simple ‘Impact Tool’, which could be used by DEEP coordinators and facilitators with DEEP groups to collect information and collate and share examples of activism across the network
  • two simple, evidence-based checklists for use in auditing outside and inside spaces
  • a film – compiled from audio diaries – in which a number of people with dementia talk about their perspectives on ‘making an impact’

It was agreed that a priority was to make sure that this learning and these outputs are available to as many people with dementia as possible. The discussions also stressed the impact of the process of activism – the ‘being part of something’ and the links to peer support. Any impact is not just on policy but also on individual people and their experience of living with dementia.

Co-producing the outputs

I subsequently visited each of the groups again, in order to work with them on the agreed outputs. The main one is the guide ‘Making an Impact Together’ which was authored by me with regular reference back to the three groups, and illustrated by Michael Young, husband of one of the group members. It was published as a pdf on three websites (DEEP, Dementia without Walls and ECRED) and hard copies were also circulated to all DEEP groups. In November 2016 the guide was launched by members of the DEEP groups involved at the UK Dementia Congress in Brighton, and also in the same week at the Alzheimer Europe conference in Copenhagen. It was also promoted via social media.

To complement the guide, the Dementia Diaries project produced a 7-minute film The Impact of Dementia Activism’, based on a number of bespoke audio diaries by 7 members of the DEEP groups. They describe how they are trying to have an impact on social policy, practice and attitudes.

For more information see http://dementiawithoutwalls.org.uk/thinking-differently-about-dementia/engagement/

What next?

Following interest expressed by the team’s Japanese contacts during the course of this project, an adapted Japanese version is now being developed. To be completed by the end of 2016, this will be circulated across Japan to dementia groups and organisations.

Subject to acceptance of the abstract, both versions will be launched at the ADI (Alzheimer’s Disease International) conference in Kyoto in April 2017, as part of a planned symposium. We hope that one or more of the people with dementia who have been involved will be able to be there.

With support from HammondCare’s dementia design team, two design checklists have also been produced in simple, accessible format and language for use by dementia activist groups as they audit buildings and spaces. In Spring 2017 these will be tested and refined with a number of DEEP groups, through observation of their use and usefulness at actual audit exercises. The final lists will then be published and disseminated.

Phase 2 of the project is subject to funding. It aims to collect further evidence on the influencing and activism of people with dementia in the UK, and on its impact, and to share learning across the UK and internationally. This phase will specifically test out the Impact Tool included in the new guide and seek new examples of impact to include in edition 2.

Reflections

To date the project has illustrated how the development of the collective voice of people with dementia has more than exceeded expectations in both growth and influence.  The guide has been very well received, not only in the UK but also in Japan! It provides evidence both of achievements to date, and also of some of the issues that inevitably arise when people come together to work collectively.  The willingness of the DEEP groups to share their learning around this with each other is impressive, and bodes well for the future of the network.

 

For more information see http://dementiawithoutwalls.org.uk/thinking-differently-about-dementia/engagement/

Dementia Words Matter

This important campaign has now been running for around 18 months and is still as significant as ever.

It all started with a roundtable session at Joseph Rowntree Foundation’s (JRF) London office, attended by journalists, people with dementia, and a range of organisations working in the field of dementia. We all agreed that the language that is used to describe dementia itself, people with dementia, and the impact of dementia is often rather negative. So often we hear people say “he is demented”, “she is a dementia sufferer”, “the dementia time bomb”… all of which conjure up nasty, withering, and frightening images. We wanted to change that! And so we discussed the different ways that we could promote using positive language and how these would be implemented. If only we had all the time and money in the world!

We decided that the easiest way to implement these ideas on a shoestring and with such a small group of passionate people was to encourage people to sign up to this campaign by making a pledge on the Dementia Action Alliance website. Posters, infographics and leaflets were created, showing positive photos of people living WELL with dementia and urging everyone to be considerate about the language that we all use. JRF made a fantastic video on the importance of language, starring people with dementia themselves, which was very effective.  On Our Radar also created a national series of audio diaries – entitled Dementia Diaries – that documented the day-to-day lives of people living with dementia. By sharing their experiences, they hope to prompt dialogue and promote understanding.

Many people wrote to national papers telling them about Dementia Words Matter and challenged them to change the language that they use. And some did! This is a fantastic example of what everyone can do, and something that is so quick and easy.

The number of signatories now stands at an amazing 388 individuals and organisations, all committing to use positive language when speaking about dementia. These include many major organisations, such as Barclays Bank, British Red Cross, Care Quality Commission, Local Government Association, Royal College of General Practitioners, and St John’s Ambulance. This is still such a fantastic campaign, and I have heard so many people speaking of the impact that they have witnessed as a result of this. Changing the language that is used is one of the first steps in changing people’s perception of dementia. If everyone was successful in changing just one person’s vocabulary of dementia, then we are on a positive path to creating a dementia friendly society, where stigma is banished and people with dementia can live well.

Read about Dementia Words and watch the short film here

There’s nothing better than peer support

Monthly peer support is vital

Brigid and I – How society sees people with dementia

My friend Brigid and I love Autumn. She tells me how she likes the country colours when October comes. So calm it is then. Every year that passes, we love it more and more. We don’t love it because we are in our seventies. No. We have always loved it, even when we were children we looked forward to its arrival.

But we have to agree here that our growing love of Autumn might also be to do with the always-present fact that Brigid has Alzheimer’s and I have vascular dementia. Our love for calm and order comes from our need to avoid confusion.

We meet once a week at a very nice coffee bar where the people are kind to us and we can see the wonderful North Sea. But this time, Brigid and I decided to stay at home for our usual coffee and invited a young friend of ours, who could be our grandson. Lewis Slade is training to be a psychologist, and dementia is one of his interests.

Lewis says he remembers how he met us at Kent Forget Me Nots, a group of people living with dementia who meet, with the help of psychologists, to research and to inform society about the views of people with different dementias.

While pouring his coffee, Brigid asks Lewis why he thinks that people treat people with dementia so badly. “The other day,” she explains, “I went out to lunch with friends. We were quite happy discussing the weather or an article that I had read that morning, and the conversation was friendly and normal. But once I told the person next to me that I had Alzheimer’s, this person stopped talking to me again and avoided making eye contact with me. It was like a big dark screen had come down between us.”

I agree with what Brigid just said. The way people react when you tell them that you have dementia can only be described as bad – at times even cruel and stupid. “For instance, Lewis, imagine you had met Terry Pratchett a few years ago, at the beginning of his Alzheimer’s. You didn’t know he has it and you are enjoying talking to this man of great imagination and kindness. Somebody tells you that he has this disease. Would you stop talking to him? No you wouldn’t, because you are an intelligent and moral person, but a lot of people would, I can assure you, because that is our experience.”

Lewis says that he thinks that may have to do with the stigma surrounding dementia, which comes from a lot of misunderstanding about what it actually is. “And I think,” he says, “partly, a lot of the misunderstanding comes from what you both feel so strongly about, and what you have discussed with me before: the language that’s used to describe it. For example, in medical textbooks, dementia might be described as ‘a chronic or persistent disorder of dementing process marked by memory disorders, personality changes, impaired reasoning…’. It’s not very human is it? And I think that’s one of the things with the way people often talk about dementia, it can be dehumanising. And it can lead to all these misconceptions.”

“Lewis, that is so true!” I say. “But many times I have wondered how to resolve this problem. Because it is a problem isn’t it?”

“There needs to be some kind of agreed language that everyone uses,” Lewis replies. “And there’s been a lot of work recently by people with dementia to try and engage the media in this discussion and to stop using phrases like ‘dementia sufferers’, ‘epidemic ‘ etc. These can be dehumanising and insulting to people living with dementia.”

“I’m a woman living in the 20th and 21st centuries in a democratic Europe, where I always felt equal to anyone around me,” says Brigid. “But lately, I have to say, at times I haven’t seen myself that way. Anything I say doesn’t have the same value as someone not living with dementia. Many times, when talking to people who know I have it, they either ignore or disregard what I’m saying. Even worse, people feel free to lie to me, or about me. My experience” adds Brigid, “is that sometimes, people talk to me as if I weren’t bright enough to understand the least thing they are talking about. Having travelled, lived and studied in different countries, I feel diminished. How can we face such situations, because living with this stigma is not easy?”

“But how can we inform society about this problem?” I ask. “Through the media?”

“I suppose they have been engaging a bit lately” Lewis says. “they have started listening. Whether there is actually change, I think remains to be seen. But yes, they do need to take some responsibility for this, because the press has an incredible amount of power over the opinions that people form.”

It’s time to go. “Dear Lewis, thank you so much for coming to coffee with these two old ladies” I say. We have learned so much talking with you and hope that those who study dementia plus the media listen to the contribution of people who live with the condition and understand how people can feel confused and diminished by the way they are treated. Society should know that the importance of kindness cannot be underestimated.”

Vocal Flourish

Singing together in a choir can be such a powerful experience – you only have to watch Gareth Malone’s TV programmes with groups such as the Military Wives. A choir in York – Vocal Flourish – is pushing the boundaries, bringing together people with dementia and their supporters under a professional conductor.

Ali Cummings was invited to write a brief evaluation based on a visit to one of their sessions – and what she found was impressive!

Read the evaluation report: Vocal Flourish Evaluation

A view from a Canadian

Sometimes it’s hard to see the wood for the trees, to realise how much dementia activism has already achieved in the UK. But Sheila Novek, a visiting PhD student from Canada, was bowled over  when she took part in a DEEP event which took place in London this March. “The passion, creativity and energy of the people I met were an inspiration” she says – and she will take this experience back to her colleagues in Canada. Read more in her blog…

 

I recently had the opportunity to attend a workshop in London involving some members of Dementia Engagement and Empowerment Project (DEEP), the network which connects and supports independent organizations around the UK that are led by, or actively involve, people with dementia. Members from three of these groups attended the workshop to identify new ways to collaborate with DEEP to support the efforts of local groups engaged in dementia activism. The workshop was part of the IDA (Impact of Dementia Activism) project, which is funded by an ESRC impact accelerator award held at E-CRED, Edinburgh Centre for Research on the Experience of Dementia.

Over two days, I had the privilege of getting to know dementia activists and their allies and learning about the landscape of dementia activism in the UK.  I was moved by their passion and dedication and inspired by the impacts of their collective efforts. I learned about the many contributions they are making to their communities and to society more broadly.  From helping local businesses become dementia friendly, lobbying for better services and supports, and campaigning to end the stigma of dementia, it was clear to me that people living with dementia are effecting positive change.

The workshop was the first time I came to know people living with dementia who were open about their illness and candid about their experiences and aspirations.  What struck me were their unique perspectives and the insights that come from first-hand experience of living with their condition.  I also began to understand what it means to live well with dementia and some of the challenges that entails.  At the end of the workshop, I had a much better appreciation of the value of these perspectives, and their potential to change public perceptions and shape more effective policies and services.

In Canada there are currently no similar organizations led by people with dementia advocating for change.  The passion, creativity and energy of the people I met were an inspiration. When I return, I plan spread the word about the innovative work happening across the UK and I hope it takes off in Canada soon!