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
IntroductionThe increasingly ageing population is associated with greater numbers of people living with dementia (PLwD) and mild cognitive impairment (MCI). There are an estimated 55 million PLwD and approximately 6% of people over 60 years of age are living with MCI, with the figure rising to 25% for those aged between 80 and 84 years. Sleep disturbances are common for this population, but there is currently no standardised approach within UK primary care to manage this. Coined as a ‘wicked design problem’, sleep disturbances in this population are complex, with interventions supporting best management in context.Methods and analysisThe aim of this realist review is to deepen our understanding of what is considered ‘sleep disturbance’ in PLwD or MCI within primary care. Specifically, we endeavour to better understand how sleep disturbance is assessed, diagnosed and managed. To co-produce this protocol and review, we have recruited a stakeholder group comprising individuals with lived experience of dementia or MCI, primary healthcare staff and sleep experts. This review will be conducted in line with Pawson’s five stages including the development of our initial programme theory, literature searches and the refinement of theory. The Realist and Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) quality and reporting standards will also be followed. The realist review will be an iterative process and our initial realist programme theory will be tested and refined in response to our data searches and stakeholder discussions.Ethics and disseminationEthical approval is not required for this review. We will follow the RAMESES standards to ensure we produce a complete and transparent report. Our final programme theory will help us to devise a tailored sleep management tool for primary healthcare professionals, PLwD and their carers. Our dissemination strategy will include lay summaries via email and our research website, peer-reviewed publications and social media posts.PROSPERO registration numberCRD42022304679.
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