Sammendrag:Although attention is paid to involving people with dementia as collaborators in research, the issue of place -where involvement actually occurs -has been neglected. This is significant because we know from the academic literature that places can adversely affect social relations and a person's ability to participate as equal partners. This paper privileges place and documents our experiences of running residencies in the English Lake District with people with dementia -Houston, Gardiner and Wallace all have some form of dementia. In doing so we provide a model to reference for involving people with dementia in research and knowledge production, while simultaneously strengthening the evidence base for the residency as a method for participatory research. People with dementia participated in two residencies to co-produce a touring exhibition and educational resource as part of a research dissemination project. We found that by privileging place a more equitable, productive, healthier, and respectful way of involving people with dementia as collaborators in research dissemination could be realised. The project has wider implications for the involvement of people with dementia in not only research, but also public consultations, service evaluations, and policy-related work.Omsorgsbiblioteket har ikke tilgang til å publisere dette dokumentet i fulltekst. Kanskje ditt lokale bibliotek kan hjelpe deg, eller kanskje du kommer videre med lenken nedenfor.
Length of paperleading research? We share the perspectives of people with dementia about these questions, building on previous research (Scottish Dementia Working Group 2014;Stevenson and Taylor 2019). Following the principle of "Nothing about us, without us", the paper features the contributions of six authors with dementia, supported by a seventh author, a disability studies academic who has not been diagnosed with dementia. The authors are all Dementia Pioneers, who are the group helping to shape the Dementia Enquirers programme. This paper describes how the Dementia Pioneers work together nationally. We talk about how people with dementia have been excluded from research.We describe the local research projects which have been funded under the Dementia Enquirers programme, before discussing new forms of ethical governance. Finally, we discuss the implications of this approach to dementia research.Are the Dementia Pioneers typical of people with dementia? We are a group of white British people, who come from a range of occupational backgrounds, mainly professional, and who were diagnosed with dementia between three and six years ago. Because we have been involved in the Dementia Engagement and Empowerment network (DEEP), we have become activists for our wider community. Teresa is a retired landscape gardener, diagnosed with Alzheimer's when 59. Wendy was diagnosed with early onset Alzheimer's in 2014. She took early retirement from her work in the NHS to enjoy life "while I'm still me". She writes a popular blog. Mhari describes herself as a mother, a wife, a friend, an advocate for Dementia Inclusive Churches, and as someone who likes dancing, riding her tandem, and meeting colleagues on Zoom. George is a retired teacher and accountant, diagnosed with mixed dementia in 2014. He has become an activist for better dementia care, and, recently, a dementia craftivist. Agnes was trained as a Queen Alexandra Army Nurse. When she was diagnosed with Alzheimer's in 2006, she became a dementia activist. Howard was an Auxiliary Nurse in the NHS until his diagnosis of Alzheimer's and Frontal Temporal Dementia in 2017, and is now a dementia activist.The experience of the DEEP Network and the Dementia Enquirers research programme has been transformative. Mhari explained: "It's the only place that somebody listened. Very often, people can treat you like a child, as if you can't do anything at all. We are
This paper addresses the issue of accessible design in the context of dementia. It is not difficult to design buildings and outside spaces for people with dementia but you do have to follow clear design principles and values. However, unlike other disabilities, accessible dementia design is still viewed as an added extra and not a vital component of facilitating citizenship. In 2015, the World Health Organisation published guidance on human rights and dementia. People living with dementia are frequently denied their human rights even when regulations are in place to uphold them. This paper will focus on accessible design from a human rights perspective using the PANEL principles. PANEL stands for Participation, Accountability, Non-Discrimination and Equality, Empowerment and Legality. We will then conclude with recommendations for policy, practice and research to ensure that accessible design for people living with dementia does not continue to be a neglected space in the equality debate.
Many people living with dementia are ‘on the margins’, not accessing services and support, despite policy and care advancements. The COVID-19 pandemic exacerbated this, with the closure of face-to-face support during lockdowns in the UK and globally. The aim of the ‘Beyond the Margins’ project was to develop, implement, and evaluate a face-face programme of support with, by and for people with direct experience of dementia who are on the margins of existing services and support. In March 2020 the project was interrupted by the outbreak of the COVID-19 pandemic and it changed to an online format. The three-phase participatory action research project included 40 people living with dementia, 26 care partners and 31 health and social care practitioners. A seven-week online personal development programme called Getting On with Life (GO) was developed, delivered, and evaluated. This paper focuses on the participatory approaches used to develop and implement the GO programme, and the resulting aspects of its approach to facilitation and content. Key features include the GO Programme’s principles of providing a safe and a respectful space, and the programme’s values of: Everyone who comes already knows things, can learn things and can teach things; Doing things ‘with’ each other, rather than ‘for’ or ‘to’ each other; Personalised goals—led by the needs of participants rather than an imposed agenda. A key finding was the importance of developing post-diagnostic programmes as a ‘sandwich’, providing a safe space for learning that is preceded by understanding pathways to access the programme and followed by explicit consideration of the next steps in increasing social engagement.
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