Living Well with Dementia: Creating a Regional Strategy for the East Midlands

By Julie Barnes and Jill Guild

Heather was so relieved to have the diagnosis and to know, for sure, what was happening to her. At fifty-three, it was hard to imagine the future with Alzheimer’s disease, but now she and her family could face it together and “start living again.” For them, this means enjoying the time they have together, traveling, celebrating, and doing things they might never have done, while they can. Dave, her husband, left work and together they are living their life to the full, including campaigning for greater national and local awareness of dementia and better services. Creating great times and memories for their future; making a major contribution to services; and, in doing so, impacting positively on Heather’s well-being and the progress of her dementia.

Focus of the Inquiry

Creating a vision for living well with dementia in the East Midlands, UK. This story describes and demonstrates the power of discovery and dreaming in creating compelling visions for the future.

There are currently 700,000 people in the UK with dementia whose care costs £17 billion a year. In the next thirty years, the number of people directly affected by this condition is likely to double. In August 2007, the government announced a program to develop the first National Dementia Strategy and Implementation Plan for England. Published in February 2009, this ambitious strategy aims to support people with dementia and their careers in living well with dementia.

This is an important challenge for everyone involved. Dementia can result in a progressive decline in multiple areas of function, including memory, reasoning, communications skills, and the skills for carrying our daily activities. Alongside this, individuals may develop behavioral and psychological symptoms such as depression, psychosis, aggression and wandering, creating risks for the individual and challenges for caregivers. Family caregivers of people with dementia are often old and frail themselves with high level of depression and physical illness, and a diminished quality of life. Dementia is a terminal condition but people can live with it for seven to twelve years after diagnosis. There are growing numbers of people of working age with dementia whose medical, social, and care needs are different from those of older people.

The Client

The NHS Development Centre is part of the East Midlands Strategic Health Authority with responsibility for improving services and building partnerships across the multiple agencies who are delivering child, mental health, and offender healthcare. The East Midlands region covers rural and urban areas in five sub-regions including five local councils and nine primary care healthcare trusts from Northampton to Lincolnshire. Approximately 4.3 million people live in the East Midlands, with a range of minority ethnic populations and 700,000 people aged sixty-five and over.

Responsible for implementing the dementia strategy in its region, the client was committed to creating a process with people with dementia and their caregivers at its heart, not just consulting about predetermined proposals but supporting them to create and lead the development of the strategy themselves.

Client Objectives: What Were the Best Possible Outcomes Articulated by the Client?

It is in this context that the East Midlands Development Centre decided to use Appreciative Inquiry in developing its regional strategy for helping people to “live well” with dementia. With people with dementia and their caregivers at the center of this work, it has developed an innovative and leading-edge approach to creating a vision and strategy for the region.

The regional support team planned and scoped the project with internal and external stakeholders, including people with dementia and their caregivers. The team produced data packs of the known socio-demographic characteristics of the localities and a diagnostic screening tool to help service commissioners and providers map their current activity against the seventeen key objectives outlined in the National Dementia Strategy. This work started to indicate where current resources were focused and where they might be needed in future. A plan emerged to run five commissioning workshops in each sub-region using a structured process of “strengths-based lean thinking” in which local people would work together to identify what was needed and to decide how to make it happen. This was supported by CSED, a national team at the UK Department of Health, tasked with supporting efficient working across the National Health Service.

The lead client was determined that this process would only start after the regional vision was created by those most affected by dementia. Having worked with Appreciative Inquiry before, she knew that this would be a uniquely enjoyable, creative, and powerful way to unite people in tackling this strategy together; in creating a shared, compelling vision; and making sure that every voice was heard. The team’s aim was to work with people with dementia and their caregivers in co-creating a vision for living well in the East Midlands and to take this vision into the planning and commissioning of local services. Their greater wish was that, by using Appreciative Inquiry, the “living well” would begin at once, through the appreciative conversations and new ways of thinking and talking about how we live and what helps us to live well.

What Was Done: Who Did What? A Summary of How the AI Process Was Used and What Occurred in Each Phase of the Process

Between June and September 2009, regular meetings were held with people with dementia and their caregivers to discover what it means for them to live well with dementia and to start envisioning for the future. Using appreciative questions to structure their conversations, this core group of people “discovered” and “dreamed” together, and some took the questions out to other caregivers and people with dementia in their local areas. The group co-planned a wider summit meeting for the autumn and some people spoke at this meeting, either in person or via video clips. The membership of this group changes each time, with a consistent core of people who come to every meeting.

June 2009

In June 2009, an invited group of ten people with dementia and their caregivers, together with caregivers from third-sector organizations, came together to start talking about what this work might look like and to begin conversations about what living well with dementia means to them.

We began by inviting people to introduce themselves and say what they were bringing to the meeting—of themselves and their experience. We quickly learned that everyone had an important connection to dementia, both personally and professionally. Even the practitioners there had stories of mothers, fathers, in-laws, grandparents—people in their lives who had been touched by dementia. “We’re in it together” emerged as a powerful quote from this first meeting.

We invited people to talk in pairs about what living well with dementia means to them and to tell stories about times when they experience this. Initially this was a challenge—this is not the usual kind of conversation about dementia, where people watch their loved ones “disappear,” where the demands of caring are rarely matched by external support and where frustration and emotion runs high. Living well with dementia is a contradiction in terms to many.

Yet when we started to tell each other stories, we found the high points, the joy, the laughter, the love. Carol told us about a riverboat trip that she and her mother had taken, where the relief of sharing the care with others for just that afternoon meant that “we could be mother and daughter again.” Stories of life in residential care homes, where elderly people who had been neglected, lonely, and isolated in their own homes were now surrounded by support, were eating well, and staying warm, so that relatives could focus on building their relationships and being with the person rather than struggling to keep him or her safe and well. Stories where having an early diagnosis and active follow-up from the consultant meant that people with dementia could start living again, managing their condition, learning new skills, and doing things that they had never imagined doing before.

We “dreamed” together of ways in which this campaign could be communicated to others and of what it would be like if everyone was talking about “living well” with dementia. We shared ideas about taking this “discovery” out into their communities, using the same questions and particularly the invitation to talk about times when people are living well with dementia. We talked about media opportunities to share these stories and to keep the message going out, raising awareness, which itself is one of the national strategy objectives. The seeds of an idea to have a larger day or summit meeting with professionals and stakeholders across the region were discussed for later in the year, after more work had been done with people with dementia and their caregivers.

This small group of people agreed to be the core group for this project and undertook to meet again in July, bringing with them one or two friends or colleagues so that we could continue these discussions with a larger group of people. We undertook to write up the key messages from this first meeting and to present this to the next gathering.

July 2009

At this meeting we planned to outline our process, share the messages from the previous gathering, and continue our discovery conversations. We also planned to do some group dreaming or envisioning of what “living better” might look like, to prepare people to carry out further discovery interviews, and to plan together for the summit meeting.

Like all best-laid plans, this was a day that went its own way, responding to the needs and wishes of the people who came. Already one facilitator down, the lead client was struck by swine flu. Undaunted, the day began with about fifteen people from different parts of the region; some people had been before and many were here for the first time. As the introductions began, more and more people arrived until there was standing room only. There were people with dementia and their caregivers; elderly people caring for their husbands, fathers, and mothers; care workers and people from the voluntary (third sector). People who had been working in this area for many years, and even someone who had just heard that her mother had been diagnosed with dementia and didn’t know where else to turn! Everyone listened as people told their stories and explained why they had come to this meeting.

As people left the room to carry on their conversations in pairs, we moved to a bigger room, smoothly transferring people and belongings to the comfort of a new location. Energy was high as people came back into small groups to share their stories and to draw out the common and different themes of what is at the heart—the positive core—of living well with dementia.

Here are some of the things they told us:

Amid the high energy and positive stories were some heart-breaking ones. Tears were shed of sorrow, loss, and grief at the impact of this terrible condition. Anger and frustration about the lack of resources and the hardship of caring for loved ones at home alone rose up and were respectfully heard by everyone. As the facilitator, I made the decision to stay with the stories and the emotions and to let go of the planned agenda—what was happening in the room needed to be heard and acknowledged, and this is what we did.

At the end of the day, people left with their discovery interview packs and we had barely spoken at all about the summit meeting. Aware that we had not done as much as we had planned, I was reassured by the feedback from the client’s side that this had been an important meeting and they were very happy with what we had achieved. On reflection, this was one of the key learnings for me—that appreciating and valuing all the stories and all the emotions is a powerful part of the Appreciative Inquiry process. What needs to happen will happen if I, as a facilitator, can be open enough to trust the people involved and can co-create an environment in which people feel they will be listened to in their pain as well as in their joy.

September 2009

During the summer, I heard from some of the caregivers about the additional discovery interviews they were doing and the power of these conversations in bringing people together and inspiring them to take part in this process. We set up a meeting in September to share more of these stories and to talk about how we would take these forward into the regional summit. We also told people that we would be filming the meeting and we invited people with dementia and their caregivers to tell their stories on camera. We wanted to use some of this film at the regional summit and also to create a record of the whole process for teaching and awareness-raising.

At the September meeting, we were back to fewer numbers, including some of the people who had been most vociferous at the last gathering. We had typed up the stories we had gathered and posted these around the room. We invited people to take a walk around and to talk in pairs about the stories that had most impact on them, looking for the “sticky stories”—the stories we must tell. We talked together about the structure and content of the regional summit meeting, including who should be invited and who might want to tell their stories, either in person or via the film. Through the day, individuals and couples also told their stories to the camera and it was a credit to the young camera crew who captured sensitively even the most painful subjects, and kept focusing on living well.

There was a growing sense of fellowship in the group and changes for individuals since the last meeting. One lady in particular had taken concrete steps for herself, her husband, and her family with great impact on their lives, on her feelings about her situation, and her own sense of self-esteem and empowerment. She subsequently told us that “Over the sessions and with each one being different, I feel I have gained information and confidence.”

In the afternoon, we used the positive core of the stories to dream together about “living well—living better” with dementia, using creative materials to create powerful visions of the future. Here is one example of what was created that day.

Flourishing Services—Strong Support

This picture for the future (Figure 2.1 ) was created at the discovery meeting on 11 September 2009, by people with dementia and their caregivers. The person with dementia is at the heart of the tree. The solid trunk represents a consistent pathway for everyone. At its centre, the consultant is the gateway to early diagnosis, assessment, information, support, and services. Arrows in all directions show the complexity of the relationships and the importance of clear, focused communication. The flourishing services are shown as fruits of the tree, which people with dementia can access, and there is a gold star when the system works well for individuals and their careers.

By the end of this meeting, we had planned the regional summit meeting and talked through who was going to speak and the stories we would tell. We agreed that the focus would continue to be “living well with dementia” and our purpose to create a vision for the regional strategy. We agreed that our “sticky” stories would be made into posters for the summit room and that collated stories would be placed on each table so that newcomers could read about living well with dementia. Now we were bringing together a much wider group of stakeholders, including care workers and managers, commissioning managers, local counselors, medical consultants, nurses, occupational therapists, social workers, third-sector groups from across the region. Limited only by the size of the venue we knew there would be up to 150 people there and we talked about how to support people with dementia and their caregivers at such a large event and whether they wanted to speak in person or to tell their stories on the film. Both options were taken up and we undertook to edit the film so that stories could be shared during the day, as well as having two live presentations at the beginning, one from a person with dementia and one from a caregiver.

Sharing the Story, Peer Support

Later that month, I joined an Appreciative Inquiry foundation training course in Lincoln as an apprentice trainer. There was an opportunity to present current projects for reflection with colleagues, which proved to be a great moment for this work. I told the story, and together we talked through the questions we might use for the summit. Keeping the focus of living well, the important addition was to start the inquiry with a question for everyone about what living well means to them, right now. Having widened our conversations to what is important for us all, we then focused back into what living well with dementia means. This felt like a really significant reminder to aspire for the best for everyone regardless of condition and to harness what we all know and experience in creating a compelling, desirable, and stretching vision for the future.

The other gem from this discussion was the introduction of table facilitators to support participants and the overall process through the day. This was my biggest summit so far, and I was working with my personal challenge of how best to facilitate the day. With smaller groups, I encourage groups to self-organize and facilitate themselves; and I build in time for feedback to the whole room, using microphones and asking groups to present their material. With this size and the diversity in the room, this wasn’t so practical, and I was working on letting go of my need for the whole room (and me) to hear everything, trusting that the conversations at the tables were the important ones. The idea of table facilitators came from a desire to support these conversations as well as the people at the table and to ensure that key messages were captured by the table and posted for everyone to see.

Volunteers from the training group as well as officers from the regional support team and long-standing colleagues with an interest in finding out more about AI came as facilitators. They were briefed in advance with a written outline of their roles and expertly warmed up with humor, gifts, and minimal instructions on the morning by my co-facilitator, Lesley Wilson. This innovation worked well, providing support to the participants who were new to AI; to the people with dementia and caregivers in keeping their voices at the centre; to me as the facilitator, freeing me up to keep seeing the bigger picture; and to the facilitators as a learning experience.

October 2009

On 2 October 2009, 180 people from across the East Midlands and from all parts of local health, social care, and community services came together with people with dementia and their caregivers to continue this inquiry and to create a regional vision for living well with dementia.

Building on the discovery work with people with dementia and their caregivers, the summit inquired into what it means to live well with dementia and what it will mean to live even better; creating images and words for a compelling future—creating a live vision for the regional strategy. Participants worked together, telling and listening to stories about living well—powerful and inspiring stories of times when people felt most valued, most connected, and most supported.

From the stories, we identified the essential elements of living well—the things that contribute to full lives—and we used these to create our visions for the future—how it will look when everyone is living as well as they possibly can, with the information, people, and services that will support them to do this. The day was recorded by film and by photographs.

Working with this large group, we heard powerful stories from people with dementia and caregivers and impassioned pleas to improve services and make a real difference with this dementia strategy. Working with people they’d “like to know better,” participants had conversations in pairs and small groups about what it means to live well and for the future. We posted table feedback about the key themes and the positive core of living well with dementia and invited people to walk and talk around the gallery. After lunch, we invited people to work in their sub-regional groups for the dreaming and design sessions in preparation for the sub-regional workshops. Here was an opportunity for local people to start co-creating together, getting to know each other better and to forge what we hoped would be constructive and long-lasting relationships that would assist them in the next stages. People who dream together, stay together, and this was how we set it up. Some sub-regions had several tables and everyone threw themselves into the creative process of dreaming for a future in which the positive core of living well with dementia was amplified, achieved, and the best it could be.

Rather than taking formal presentations of the dreams, we invited people to visit each other’s tables, walking and talking, world-café style. The ensuing session was a sight to behold as people talked and exclaimed, proudly presented their dreams, and laughed and imagined together. As a concession to my longing for the whole room to catch a glimpse of the whole, we did a final run around the room with the microphone, hearing some of the provocative propositions that accompanied the visions. Here are some examples:

• Look at me, not the label
• My life, my choices, my dream
• Pick and mix—we are with you for the journey
• From deflation to elation to celebration
• From stranded to boarded to sailing
• Breaking down barriers
• A real deal for real people
• The only way is up
• Living, achieving, holding
• We are as good as we are because we listen to people with dementia and their carers—they are the experts and we never forget this

In the final session, the sub-regions reflected on what they had achieved, their next steps, and what they would be taking forward into the detailed planning and commissioning process. The day ended with a powerful call from one of the caregivers to everyone to keep up the momentum of this work, to “avoid wasting everyone’s time,” and to make sure that real changes were made as a result. A final clip from another caregiver asking only to be respected and supported brought the day to a silent and moving close.

Outcomes: What results were achieved for the business, for members of the organization, and for customers or other stakeholders?

“People with dementia and their caregivers have been at the heart of our discovery in the East Midlands and will continue to lead us in creating the services and support systems for living well with dementia. This regional strategy begins with powerful visions for the future when people with dementia and their carers are living well; visions to which people in the East Midlands are aspiring and are now starting to create. The stories, pictures, and quotes that follow describe what living well means and what people with dementia and their carers value most.” (Regional Strategy November 2009, p. 5)

The visions, provocative propositions, and key messages from the summit were collated into the regional strategy report—a document intended to inspire and set direction for the sub-regional workshops and local commissioning. It has been sent to everyone who came to the summit and to the key commissioners and senior staff in the sub regions.

Rather than picking one vision, the report contains five or six key pictures (Figure 2.2) that express powerful successful futures and lives lived well with support for all.

One particular statement (Figure 2.3) was chosen by the client to represent their whole work and this now appears on everything that is connected to the ongoing work.

Over the next six months, these powerful images and words are inspiring local commissioners, practitioners, people with dementia, and their caregivers as they come together for the sub-regional workshops, to design and start creating local services based on what people with dementia and their caregivers value most in living well. This work is being filmed and will be made into a complete DVD of the whole process, and there are still discussions about creating a book of the stories we have gathered and a traveling exhibition of the visions that were produced in order to keep raising awareness about dementia and inspiring conversations about living well. This is just the beginning … !

And the core group of people with dementia and their caregivers continues to meet to review their progress and to tackle specific design topics, for example, recently creating prototypes for information packs. As well as participating in the commissioning workshops in their own areas, they are keeping an eye on the whole process and are central to decisions about the strategy and the next steps. They have given their blessing for this story to be submitted as a case study.

Learnings: What worked especially well? What wishes do you have for the next time?

Reflecting on this story has been a moving reminder of how much can be achieved in the most unexpected ways from working with Appreciative Inquiry, at personal and professional levels, as well as for the whole systems that step forward to work together. It is a way of working and being that liberates people, unleashing their talents, creativity, resources, and best selves to the common good. As a facilitator, I follow the Watkins mantra of “planning tight, hang loose”—co-creating the conditions and environment for people to work together and then “getting out of the way” so that they can do it for themselves. As with every AI I have ever been involved with, I stand enthralled and humbled by what is created and designed.

I have been particularly struck by the determination of the client to keep people with dementia and their caregivers at the heart of this work. Her energy and leadership in bringing together the project, the people, and the mission has been crucial to its success.

The courage and generosity of the people with dementia and their caregivers in talking together, in sharing some of their most difficult stories, and in trusting us with a process they were sometimes unsure about has been inspiring; what has been achieved is a real tribute to them.

I particularly liked the way that this project created its own momentum while giving time for the people with dementia and their caregivers to build their confidence through the series of meetings and the development of their stories and visions. This was important modeling for the professionals and practitioners who work with service users and caregivers all the time, but rarely keep them central to such an important planning process.

I have observed first-hand the powerful impact for individuals of working in this way, as change really does begin from the first questions we ask. The appreciative questions and our focus on the positive created an energy and momentum for this work, which in itself was healing and nurturing. Friendships have been formed and individuals empowered to take charge of their own situations.

I learned again about the value of appreciating every contribution, especially the anger and frustration, and the importance of working flexibly so that everyone can be heard and acknowledged. When we look for the best in AI we are not turning away from the difficult and the painful—we want to learn from them and understand what helps us to survive the tough times too.

Finally, I learned about letting go of my need to know what is happening in the room and to trust that the conversations that are happening are the important ones. The people in the room are responsible for taking this forward so it is what they are saying to each other that is important. What I need to contribute is co-creating and holding the creative space in which they work in the best ways they know.

Wishes for next time? Maybe to create something even bigger and better—an aircraft hangar rather than a ballroom for the summit, with greater numbers and representation from the whole system? To not be limited by my own imagination, trusting that this process brings the right people with the necessary energy and creativity to the table and then generates a whole lot more momentum for change and action.