Exploring Two Decades of Involvement, Voice and Activism by People with Dementia in Scotland Philly Hare, Innovations in Dementia June 2020 Contents
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Loud and Clear! Exploring two decades of involvement, voice and activism by people with dementia in Scotland Philly Hare, Innovations in Dementia June 2020 Contents An accessible summary .................................................................................1 Foreword ............................................................................................................4 1. Introduction .................................................................................................5 2. Early days .................................................................................................. 14 3. Moving up a gear ...................................................................................... 42 4. DEEP in Scotland ...................................................................................... 57 5. Involvement in research ........................................................................ 74 6. Creativity and voice ................................................................................ 88 7. Scotland and the wider world .............................................................101 8. The motivations, costs and rewards of activism ...........................117 9. Reflections on impact and learning .................................................136 Appendix 1 ...................................................................................................168 Appendix 2 ...................................................................................................170 About the author ........................................................................................173 An accessible summary Introduction This book tells the stories of twenty years or so of involvement, voice and activism by people with dementia in Scotland. It’s important to tell these stories about what activists have achieved. This will make sure we don’t forget what they have done. And it will help people who are living with dementia now, and in future, to learn from those who came before. Early days The Scottish Dementia Working Group (SDWG) was formed when activists, advocates, researchers and policy-makers all came together. The group was determined to bring the voices of people with dementia to the attention of Scotland. They wanted to make changes that would improve the experience of living with dementia. Its members also found new hope and meaning in their lives, instead of despair. But the group faced many challenges. Moving up a gear SDWG grew in confidence and made important connections. They started to influence national policy and Scotland’s rights-based approach. Some experienced members outgrew the group, deciding to follow their own priorities and to set up the Scottish Dementia Alumni. The Life Changes Trust brought many more opportunities for the voices of people with dementia to be heard. 1 DEEP in Scotland DEEP – the UK Network of Dementia Voices – led to a large number of groups connecting with each other across Scotland. The groups are all very different, but they share a sense of belonging and connection. The groups get involved in a wide range of projects (often funded through small DEEP grants). The DEEP Gatherings enable groups to meet together physically as often as possible. As time goes on, many more voices are being heard, and in many different ways. Involvement in research Twenty years ago, people with dementia were often ignored, left out, or represented by others in research. Then researchers started to ask them for their own views. People with dementia began to help them understand how to do research better. Some were involved in advisory groups, employed as co-researchers, or even became fellows of research bodies. Now people with dementia are designing and leading their own research projects on their own chosen topics. However, people with dementia are still regularly left out of research about wider issues. Creativity and voice Activists, researchers and artists have worked together to enable the voices of people with dementia to be heard loud and clear. Examples include poetry, fine art, film and video, photography, quilt-making, bird sculptures, plays and banners. These creative approaches have enabled many more voices of people with dementia to be heard in Scotland. 2 Scotland and the wider world Activists have created strong connections abroad. They have tried to bring back learning and new ideas to Scotland. But policy-makers have not always been very interested. However, Scottish activism has had an important impact on developments all around the world. The motivations, costs and rewards of activism Activism is not easy. People have to cope with tiredness, financial costs, ill-health, lack of appreciation – and sometimes criticism. But there are also many benefits. These include a strong sense of achievement and belonging. Activism also brings new relationships, confidence, skills, and meaning to life. What has been achieved? The courage and energy of the activists has inspired many individuals. Activism has helped to change both policy and practice. There is much more work to do: stories of poor diagnosis and post-diagnosis experiences are still common. Some people feel activists lost the freedom to follow their own ideas and express their views. But there are now more ways for people with dementia to have their voices heard. In the Appendices at the end you can find a glossary of acronyms and some practical tips for newer dementia activists, their advocates and allies. There is also a paragraph about the author. 3 Foreword A story of progress… The 13th Century Church of St Moluag, on the northernmost tip of the Isle of Lewis in the Western Isles, is traditionally associated with healing, especially for those afflicted with mental problems. But the healing is quite radical: the treatment of the ‘insane’ involves being given water from the nearby well, being led seven times sun-wise around the building and then, bound hand and foot, being laid all night before the altar, head resting on the Church of St Moluag stone pillow of the saint. The expression ‘I’ll take you to the temple’ is used well into the twentieth century as a threat to anyone behaving foolishly. But let’s fast forward to today… and just up the road lives Ron, who has Mild Cognitive Impairment and is still waiting for an official diagnosis of dementia. He is working to futureproof his house by equipping it with all sorts of gadgets and gizmos. He uses a digital platform, ZOOM, for meetings with people all over the world, and he has written a play about Artificial Intelligence! Ron lives less than a mile from the church and its tradition… but his aspirations and expectations are surely a million miles away. He is not spending his time thinking about a magical cure for dementia – he’s using all his skills and energy to live as well as he possibly can with the condition he has. To have his voice heard and to stay in control of his destiny. To create a story of hope…. and, working together with others, to make change happen. 4 1. Introduction Why tell the stories? For many centuries, people with dementia have been largely undiagnosed, unseen, unvalued, ignored and disrespected... and their voices have been unheard. It is only from around the turn of this century that people with dementia start to connect with each other and make their needs and views known directly, without the medium of (however well-intentioned) proxies. This impetus initially comes from a handful of remarkable individuals raising their own concerns about their rights, their place in their community and the quality of services being provided (or not provided) for them. Further progress comes as those with the lived experience begin to meet and work with each other – making new connections which strengthen their shared conviction that there is still hope for a kind of recovery. “After decades of silencing and discrimination, people with dementia are beginning to join forces, take action and campaign for social change.” 1 In the early days of the Scottish Dementia Working Group (SDWG), from 2002, Scotland leads the way in involvement, voice and activism – not only in the UK, but around the world. The impact of this involvement in Scotland has been huge – the first Charter of Rights for people with dementia and carers; contributions to the formation of the first national dementia strategy in the world; people with dementia as research co-investigators; standards for researchers who want to work with people with dementia; leading a University design school; creating resources from the perspective of people with dementia; and raising awareness every day in small and large ways. Further afield, countries such as Japan and Australia attribute much of their awareness of the importance of involvement to Scotland’s movement. Building on the work of Alzheimer Scotland in raising the profile and reach of the SDWG, the growing DEEP network in Scotland and numerous other innovative projects are now adding to the richness of this tapestry, with more and more people with dementia inter-connecting and telling their stories. 1 The emergent modes of dementia activism. Bartlett R. Ageing Soc. 2014a;34(4):623–44. 5 Most people who are diagnosed these days are unaware of the history of involvement that precedes them. But stories are still told and remembered about some of the forerunners to, and key players in, the current dementia movement in Scotland. This includes people with dementia, unpaid carers/ care partners, academics, artists, staff