Comfortable

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

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

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

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

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

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

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

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

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

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

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

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

We should all look forward to more comfortable times…

By Damian Murphy, Director, Innovations in Dementia.

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

(2) Morbey et al (2019) Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development.
https://doi.org/10.1186/s13063-018-3069-6  accessed 12/02/2019

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

 

 

Minds and Voices Opening minds and moving forward

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

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

The Need

Essentially the money is beginning to run out!

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

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

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

 

Creating the constitution together

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

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

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

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

 

Discussions

We had debates about voting rights and capacity.

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

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

 

Roles in a more formal organisation

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

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

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

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

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

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

By Damian Murphy, Director, Innovations in Dementia.

 

 

Reflecting on my 20 years of working in dementia

At this year’s Dementia Congress in Brighton I sat alone and listened to the Tom Kitwood Memorial address – a rare opportunity amidst a mighty presence and input by people with dementia via the DEEP network. I found myself reflecting on my 20 years working in the dementia field, being inspired by Kitwood’s work as a bright young thing in 1998 in my first ‘proper’ job, supporting long term, citizen advocates for people with dementia living in care homes in the London Borough of Greenwich. People who had no-one else in their lives to speak up for them and with them. Our volunteer advocates stood side by side with people, finding ways to collect and honour wishes, hopes and feelings, when verbal communication was impossible to articulate. Side by side at very difficult times of transition, following crisis and trauma. Side by side looking towards end of life and death.

Fast forward 20 years and I’m still working in dementia. I can’t imagine being anywhere else. At Dementia Congress people with dementia were front and centre stage, running as a golden thread, with family carers, throughout this conference. But, of course, these people are few in real terms, and the experiences of the remaining population of people with dementia are many. I recall my colleague Steve Milton, when leaving his 8 years of running the Alzheimer’s Society’s dementia helpline, reflecting with huge sadness, that while he’d personally spoken with some 30,000 people affected by dementia, in real terms the numbers, especially of people with a diagnosis of dementia were pitifully small  – “what about the rest” he asked?

But the danger of focusing on the hugeness of the task just paralyses us.  Similarly,  dismissing activists with dementia as ‘unrepresentative’ does not help to bring the voices of people who are considered to have more advanced dementia to the forefront, nor does it recognise the ever steeper mountains they climb away from the spotlight. As Fran Hamilton, an Occupational Therapist and co-ordinator of the newly formed D-Mob group in Brighton reflected about the engagement of people with dementia: “There isn’t finite room, only an ever-expanding space for the voices of people living with dementia. This is how the landscape is changing and we get to end stigma.” DEEP is full of quieter voices, people who live in care settings, people who have had dementia for many years, people who have more advanced dementia, and are sustained by their families, their networks and their DEEP groups.

I’m so proud to see a network of and with people with dementia flourish and grow. DEEP isn’t the only network and it isn’t the only way of working. I don’t think anyone at Innovations in Dementia or within a DEEP group would say it is. But I’ve learnt such a lot from the hundreds of people with dementia I’ve worked with – echoes of their voices whisper to me at times of doubt, none louder than Lily, my grandma who, when living with advanced dementia in a care home addressed my 16 year old self to “never forget that I’m still in here.” With our recent Big Lottery funding we will be ‘capturing the story’ of DEEP groups for the next 18 months. Marking hundreds of moments in time and recording legacies with people with dementia.  It’s just a moment though. There is so much growth still to come. I’m honoured to have recently been nominated and accepted as a Fellow of the Royal Society of Arts– with its mission to enrich society through ideas and action. Innovations in Dementia is a tiny organisation of committed people. We can’t do this alone and have never claimed to do so. We want to inspire different conversations about dementia and hope you will join with us in constructive and respectful discussions. The space available for social change is infinite.

By Rachael Litherland, Director, Innovations in Dementia

Me and my Grandma.

Living with dementia: the right to good design

Why are design and the environment of such importance to people who are living with dementia?

This question takes us back to three core principles:

The first is that the experience of living with dementia can only be understood within the social model of disability. That is to say that, while the clinical symptoms of dementias can have a big impact on the way we function in the world, society and the world itself also throw up many barriers. The social model teaches us that by removing these obstacles – whether they are physical or attitudinal –  we can make the world an easier place, not just for people with dementia in fact, but for all of us to live in.

The second principle is that good design is fundamentally about inclusion and accessibility – and accessibility is a human right, as enshrined in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and also the Equality Act. Dementia is a disability under the definitions of these instruments – and accessibility is covered in many of the UNCRPD Articles, including Article 9, Article 19 and Article 20. However, we know that people with dementia are expected to function in environments which are overwhelming and oppressive for them – and that, when they don’t and can’t, this is seen as due to the dementia rather than to the environment. And it’s not just about buildings – many people with dementia find information inaccessible e.g. too complex or only online, and this again excludes them from their human right to be part of society. These clear examples of discrimination contravene their human rights.

And the third principle is that of co-production with people with dementia. Over many decades we have been guilty of carrying out research, or designing environments, policies, and practice, without proper involvement (or sometimes any involvement) of the people most affected. This is now changing – indeed people with dementia are starting to insist that it does so. And they are rightly pointing out that their expertise, gained from the day-in-day-out lived experience of dementia, must be respected and used in partnership with the technical/ professional expertise of ‘design experts’.

My talk at the Environment and Design for Dementia conference on 29 Nov 2018, hosted by Salford Professional Development, will flesh out these principles, and will draw on a range of audio testimonies about the environment from our ground-breaking Dementia Diaries project. We can learn much from such testimonies. For example, that some people prefer (and indeed find it much easier) to live alone. That noise is a huge issue for many. That simple home-made adaptations can be just as effective as ‘trendy’ expensive ones.  That people with dementia can and often do come up with their own solutions – they may just need a bit of help with the practicalities of putting them in place. And that the design of contemporary systems – such as transport, benefits applications, online booking, and call centres – can serve to exclude or include them from society.

It’s also obvious that most of our buildings are not new and can never be ‘state of the art’. However, that doesn’t mean that we can’t ‘tweak’ the design to make it more accessible. One of the most effective ways of assessing the strengths and weaknesses of an existing environment is to do a ‘walking audit’ with a group of people with dementia. This always throws up many issues that those of us who are not living with dementia have simply overlooked. Of course, half a dozen people will all have different perspectives – and they cannot be representative. So their observations and reflections are best supported by the use of the two checklists (for inside and outside spaces) which have been co-produced with groups in the DEEP network – and which also bring in research evidence from such experts as Prof Mary Marshall.

So what’s my key message? It’s that good design must recognise the human right to accessibility and the social model of disability; it must follow the ideas of people with dementia (not lead them); it must simplify not confuse… and above all, it must have as its ultimate aim the breaking down of societal barriers to exclusion.

By Philly Hare, Director, Innovations in Dementia.

 

 

Developing an alternative research involvement framework through DEEP

In the disability field, it is increasingly the case that people who use services, rather than professionals, have control over the research process. They plan and undertake research, and interpret the findings.

In the ‘dementia world’, DEEP – the UK Network of Dementia Voices which iD hosts – is growing rapidly and now comprises almost 100 involvement groups of people with dementia. We have realised for a while that DEEP provides the potential for a new approach to research delivery that is led bypeople with dementia.

Within DEEP people with dementia are already acting as researchers (even if not defining themselves as such) e.g. by: identifying research priorities, testing out methodologies to collect data,and analysing data to produce conclusions. One great example is the ‘Our Right to Get Out and About’ project which involved three Yorkshire DEEP groups (see photo). We’re keen to explore with DEEP how research knowledge is acquired and applied in a way that feels relevant to people’s own lives, rather than being purely driven by the academic research agenda. In other words, to develop an alternative research involvement framework.

So we are thrilled that the BIG Lottery Fund has awarded us over £700,000 to kickstart a ground-breaking new initiative, ‘Dementia Enquirers’.

 

The aim of the 3 ½ year project is to develop a new approach to research, or ‘enquiry’, that is led and controlled bypeople with dementia themselves.We will support groups to identify research priorities,and, helped by small grants,to plan and undertake their own research. The project will also explore with people with dementia the lessons that emerge from their work, and this learning will be widely shared. University researchers and others may be involved as advisors, or have specified roles within the projects.

 

Rachael and Philly will be co-leading this work. We are so proud to have been awarded the grant, and excited to be undertaking such ground-breaking work. We are confident that the project can influence the prevailing approaches in research – while bringing new respect for the skills, expertise and resilience of those who are living with dementia.

 

For more information contact Rachael on 01392 420076 or rachael@myid.org.uk.

Time for Action, not just awareness!

I’m so glad that Dementia Awareness Week has changed its name this year to Dementia Action Week! While awareness is an essential foundation for change, in my view it’s high time we had more action. At Innovations in Dementia, we prioritise action-based projects which will have a real practical benefit for people who are living with dementia.

The Getting Along programme, designed by Damian Murphy, is a great example of taking a recognised ‘issue’ and turning it into action. This ground-breaking approach helps couples and families to avoid the many traps that dementia sets within relationships. The formal programmes for couples and families, as well as the training and facilitation courses for staff, equip learners to improve and balance issues in the relationship. Practical actions which can have a massive impact – and may indeed save a marriage.

Our Accessibility work strand is also highly practical. We have co-produced checklists to enable groups of people living with dementia to audit both outdoor and indoor public spaces. The DEEP network has produced a guide to accessible information. And my colleague Steve Milton also leads a service called ‘Crystal Clear’, which can help you to create information that is ‘not just easier for people with dementia to use – but easier and more enjoyable for everyone to use and understand’.

In contrast, ‘Rights’ may sound very abstract and high level… but again we have tried to bring them down to grassroots so that they are made real – and embodied in action. Our booklet ‘Our Dementia, Our Rights’ is the first written by, with and for people with dementia themselves – and it offers very practical information as to how to use rights in real life. Our Shadow Report to the UN Committee on the Convention on the Rights of Persons with Disabilities contains many real-life examples of rights breaches which call for practical action. (And we didn’t just write it – we supported Keith Oliver to physically take it to Geneva to ensure it really did reach the Committee!). Our recent Yorkshire project ‘Our Right to Get Out and About’ has also supported several DEEP groups to take practical action – including setting up petitions, writing letters, making iPhone films, and designing a huge banner –  to highlight very tangible injustices associated with parking and travelling.

Too often we hear about the importance of involving people with dementia – only to realise this is at best lip service. To do this properly you have to walk the walk – you have to take action. Dementia Diaries is one example of involvement – it’s an innovative project which uses audio diaries to bring us a wide range of voices of people living with dementia. The brainchild of On Our Radar, Dementia Diaries has now been integrated into DEEP. Rachel Niblock and myself support people with dementia as ‘reporters’. They can use a landline, a mobile, emails or an OwnFone at any time to file their reports – which range from the very personal to the very political! The project has huge potential to educate, to challenge attitudes, to connect and to motivate.

With the Dementia Words Matter Call to Action we again recognised that it was going to take collective action to fundamentally change the choice of words that are used to describe dementia and its day to day experiences. DEEP and the Dementia Action Alliance (DAA) joined forces to produce a film, some guidelines, an infographic and posters – as well as a Twitter campaign #dementiawords.

There are many more examples I could give you – but I hope that these few illustrate what we believe about Action. We believe it’s got to be walk not talk. We believe it’s got to be with not for. We believe it’s got to be rights-based not paternalistic. We believe it’s got to start with the person not the service. And we believe we’ve got to get on with it.

So let’s crack on, as they say in my part of the world!

Philly Hare

Coming home

iD blog 1, Damian Murphy, April 2018

I have just spent about 18 months as a director of Innovations in Dementia (iD). iD has just completed 10 years – of doing what it says on the tin. I wasn’t there at the beginning. Instead I was searching for the right fit. Coming to Innovations has been like coming home.

This, however, is not meant to be a self-indulgent iD love in. Instead I want to share some of the questions, experiences and reflections I’ve had over the years in my journey that have brought me to where I am today.

I spent some time in community in Mexico and Honduras working, laughing, crying, living alongside young people with a disability, many from situations of abandon, marginalised in a predominantly ‘machista’ society. So, I was working with people with a cognitive impairment on the margins of society, seen as a burden, and measured and labelled in terms of what they can’t do – No change there then! 20 years later I’m doing the same.

The Spanish word most often used to describe the people I lived with was ‘minusvalidos’ – it literally means ‘Worth Less,’ revealing a societal attitude that required a counter cultural approach. Let’s not kid ourselves that this is a problem of so-called less developed countries because 20 years later my aim now (as it was then) is to celebrate the fantastic contribution individuals can make within their close relationships, within their communities and society at large; to highlight the gifts, potential and rights of people to belong, to grow regardless of any label.

Daily contact and living full time with and alongside this marginalised group fuelled the message we wanted to share. Back in the UK my nurse training spoke of Normalisation and Unconditional Positive Regard; of Professional Boundaries, when the people I met were just asking ‘Will you be my friend?’ Work in dementia involves a daily human encounter that too often we are pressured to ignore.

My first job in dementia was as an independent hospital-based advocate for inpatients living with dementia. I was accused of ‘feeding people on Nil By Mouth’ in my first weeks*; I was called by consultants asking me to ‘get rid of my demented patients;’ and came across countless entries in peoples’ notes ‘For placement’ (to a home) when the patient themselves hadn’t even been consulted. Things are improving now but it was because people were not fuelling their system with real contact and engagement with people with dementia experiencing the impact of hospitalisation. (*I didn’t give any food to people on Nil By Mouth, in case you were wondering!)

I remember running a carers information programme in Lincolnshire – and was stunned to receive a letter from Richard, a gentleman with dementia whose wife was on the course, demanding he have the right to attend or to receive similar input. – It was the start of a Forum for people with dementia, which we enjoyed calling the Stirrers’ group. (would have made a great DEEP group!) That fuelled so much of my work and I grew ever more uncomfortable with my one-sided job title ‘Carers’ Support Coordinator’.

Training was my thing and I joined the Alzheimer’s Society education and development team.  I remember on my very first day feeling completely cut off from the reality of life of people living with dementia in community. My fuel tank would soon run dry.

I even spent time working within the long term care sector. Surely contact with real people would fuel my work again. The clear messages that people gave through their words actions and through my observations was largely unheeded. Tokenistic involvement at best prevailed in residents’ ‘committees’ within an environment too often focussing on risk aversion and a perverted idea of the meaning of security (security of locked doors over the security engendered amongst residents of feeling ‘at home’). Within a large organisation nowhere near ready to EMBRACE any sort of inclusion, I was deluding myself I was making a difference.

A colleague and I reflected recently on what might be behind the internal gatekeeping that many people possess. ‘OK I’m all for inclusion, but not really sure that person has much to offer, or this person is really capable of contributing’ – Is that the voice in your head? I have to be honest it has often spoken to me, but I knew I needed to re-focus on the real lives of people living with dementia. I helped set up York Minds and Voices, now an established group of peers within DEEP the uk network of Dementia Voices. The more time I have spent with people with dementia that internal gatekeeper has shut up!

I still encounter people who are surprised at the contribution that people with dementia can make; and they wonder how it can be done, but if you don’t immerse yourself you won’t realise how easy it is. You will see problems and inconvenience (that internal gatekeeper) and feel a heavy burden about having to tick a box.

Real contact and building relationships with people with dementia fuels new and simple ideas.

Over the last 18 months at Innovations in Dementia I feel I have thrived being involved directly or indirectly in – The growing DEEP network; the greater inclusion of people with dementia not as research subject but as co-researchers; creation of practical suggestions to help put the meat on the bones of what is now the new Welsh dementia strategy; contributions to the new NICE draft guidelines; the piloting of relationship-centred approaches through the Getting Along programme; the provision of an expanding platform to capture raw and real experiences of people through Dementia Diaries; supporting and leading plenary sessions at UK and Scottish dementia congresses; offering real examples of co-production through the Good life With Dementia course where people with dementia are course designers and course tutors.

There are fantastic projects around, and there is a real movement to properly include people in design development and delivery of services – but the inconsistency I encountered kept me moving.

iD has just completed 10 years – of doing what it says on the tin. I wasn’t there at the beginning. Instead I was searching for the right fit. Coming to Innovations has been like coming home.

With all my unconditional positive regard

Damian