Magic Moments in Dementia Care Services

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Magic Moments in Dementia Care Services Magic moments in dementia care services A storytelling approach to learning and development Learn Inspire Empower Enable Foreword Older Persons Commissioner As Chair of the 3 Nations Dementia Working Group, I have played a role in helping deliver a series of webinars some around the impact of COVID 19 on All professionals working across health people affected by Dementia. As well as being united against dementia we and care services should understand the now find ourselves united against COVID 19 as well, which has had a major challenges people living with dementia can effect on people living with dementia and their carers. We must learn from face, and the positive difference they can the experiences, with health and care workers and third sector organisations make by providing the right support and continuing to play an especially important role in supporting and protecting the creating Magic Moments. rights of people living with dementia during the crisis in the UK. Today learning from these stories to improve dementia care is more important than ever. We’ve seen the huge difference that moments of kindness have made to people’s It has been my pleasure to witness people with a diagnosis and their supporters lives throughout the pandemic, and this is overcome doubt, lack of experience and confidence to tell their stories that have something we need to hold onto and build changed hearts and minds with content that cannot be questioned, or motives upon as we move forward together. doubted as the testimony in this document illustrates . I would like to thank all of the people No one who reads these stories will not be affected by the purity and bravery living with dementia who overcame doubt, of the contributors all affected by Dementia. The people who delivered these inexperience and a lack of confidence to make moments were more concerned with their purpose than their own comfort. their voices heard and share their experiences so generously to create this valuable resource. We witness in this document extraordinary examples of courage, people speaking for the first time wracked by anxiety and self-doubt but doing it As you will see, their stories are both powerful anyway, refusing to be defined by their diagnosis, demanding a place where and moving, and highlight why kindness, decisions are made and sharing the most difficult aspects of their lives enabling empathy and compassion are so important in a better understanding of the impact of a diagnosis. the delivery of truly person-centred care, the kind of care that we would all hope to receive So, we should salute all whose voices are heard and those who will be heard in should we need it. future, those who battle daily, the changes a diagnosis can have. Let’s celebrate for everybody is beyond brave in their own way our loved ones, friends advocate and allies. Heléna Herklots CBE Not all superheroes wear capes not all warriors carry armour. Older People’s Commissioner for Wales Courage doesn’t always roar. sometimes courage is that small voice at the end of the day that says; “You know what I will try that again tomorrow, I will be heard “ Nigel Hullah 3 Nations Dementia Working Group 2 Magic Moments in Dementia Care Services - Foreword Welcome Why should we collect and talk about stories? Human beings are storytelling animals This ‘Magic Moments in Dementia Care Using the DEEP approach, Public Health This engagement has helped shape the who make sense of the world through Services’ booklet has been inspired by the Wales, Improvement Cymru brought development of an all Wales Dementia narrative1. They also learn most Developing Evidence Enriched Practice together people with dementia, family Care Pathway of Standards for the effectively when they talk together and (DEEP) programme, a co-production carers, practitioners, managers and person’s journey. The pathway has been learn together2, rather than passively approach to learning and development researchers, to share and talk about structured around four key quality themes watching PowerPoint presentations or that was developed by the Wales School 'magic moment' and 'tragic moment' highlighted as important to people. These reading strategies. In developing a set of Social Care Research4. The DEEP stories from their experiences of dementia themes include accessible, responsive, of national standards for dementia care approach has demonstrated that learning care services. We achieved this through a journey, partnerships and relationships. services, we therefore wanted to take a through talking together about people’s series of regional events and associated Compassion and kindness were identified co-production approach that values stories, both good (‘magic’) and not so meetings with stakeholders throughout as critical attributes central to the and learns from the real life experiences good (‘tragic’) is powerful in effecting 2018/19. As a result, we discovered what underpinning of the four quality themes. of people, rather than imposing standards positive change. matters most to people both delivering that do not necessarily connect with the and receiving dementia care. reality of everyday lives3. Welcome - Magic Moments in Dementia Care Services 3 Quality Theme Accessible Responsive Journey Partnerships and Quality Themes Relationships Accessible – able to get help, support and advice when needed Responsive – meeting my needs at the right time, in the right way Journey – navigating to the right support / service at the right time Partnerships and Relationships – working together to achieve the best outcomes. Underpinning the four quality themes is • We have the right to be respected, and KINDNESS – how we care for each other, recognised as partners in care, provided speak to one another, engage with each with education, support, services, and other, work with each other, comfort training which enables us to plan and each other and support each other. make decisions about the future. • Our service and community response The pathway of standards reflects the needs to be equitable – whether you live spirit of the Dementia Action Plan 2018 in a rural or remote area or in a town, – 2022) where the focus is on the person Kindness and it needs to meet diverse needs, with dementia living a full, active life and for instance people with protected promotes independence, coproduction characteristics who may be living with and integration of services to meet each dementia and people who may be able individual’s needs. The standards also to understand only their first language align to the following Dementia Action as their condition progresses. Alliance dementia statements: The stories are supported by learning By sharing the stories and key • We have the right to an early and exercises to enable people to use the messages we hope to illustrate why accurate diagnosis, and to receive stories in this booklet or capture and it is so important that we build on the evidence based, appropriate, learn from new stories. The exercises capacity to continue to share significant compassionate and properly funded explain how to deliver exploratory experiences about services, both care and treatment, from trained people talk activities with the aim of having a ‘magic’ and ‘tragic’ moments. Working who understand us and how dementia conversation about dementia, shaping in partnership, talking, listening and affects us. This must meet our needs, practice and creating change ideas that understanding, will enable us to learn, wherever we live. will result in continuous improvements grow and be inspired to continuously in dementia care. improve, to shape our dementia care services together in a way that matches our community’s needs. 4 Magic Moments in Dementia Care Services - Quality Themes The Stories experience and she was also asked to Lean on me speak with the same organisation in Wales again. She went there and this time, I The community working together drove her there and stood by the side of to support groups, places and the stage. Again, she held the audience organisations to be dementia friendly in her hands. The story behind this lady is Keeping me and accessible that she had her diagnosis with dementia and she is a member of the women’s “Brian was asked to do a talk for an ‘me’ church group and she brought the subject organisation in Wales and he couldn’t do to the group and they said ‘We would Language Understanding people, where they it. He was asked if he could recommend rather you didn’t speak about that’. The are now and enabling them to feel someone and we recommended an 86 lady said ‘I have been speaking about it in matters comfortable with who they are year old lady who in her former life was a another town’. The group members asked model, very tall and from Ireland. We went Making reasonable adjustments ‘What have you been speaking about?’, “My story was regarding a friend who over to Ireland to one of the conferences so that the person is able to ‘Well, I have speaking about dementia transitioned and then got dementia. Their and she came. We asked her if she would participate in their life and dementia through the community’. partner supported them, but because speak around the communities and they had forgotten where they were, The group asked ‘Would you give us the “When I spoke French to a lady we got her life story written down, who they sometimes regressed to an earlier talk?’ The group that had made her feel who was being nursed in bed and she was and she had an amazing story. time and we were concerned that they very uncomfortable for having a diagnosis, her face lit up and she replied Then we padded it out into the dementia couldn’t be themselves. Sometimes they actually wanting something that she in French.
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