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Understanding primary care diagnosis and management of sleep disturbance for people with dementia or mild cognitive impairment: a realist review protocol
  1. Leanne Greene1,
  2. Aidin Aryankhesal2,
  3. Molly Megson3,
  4. Jessica Blake2,
  5. Geoff Wong4,
  6. Simon Briscoe1,
  7. Andrea Hilton5,
  8. Anne Killett2,
  9. Joanne Reeve3,
  10. Louise Allan1,
  11. Clive Ballard1,
  12. Niall Broomfield6,
  13. Jayden van Horik1,
  14. Mizanur Khondoker6,
  15. Alpar Lazar2,
  16. Rachael Litherland7,
  17. Gill Livingston8,
  18. Ian Maidment9,
  19. Antonieta Medina-Lara1,
  20. George Rook10,
  21. Sion Scott11,
  22. Lee Shepstone6,
  23. Chris Fox1
  1. 1Clinical Trails Unit, University of Exeter Medical School, University of Exeter, Exeter, UK
  2. 2Faculty of Medicine and Health Sciences, School of Health Sciences, University of East Anglia, Norwich, UK
  3. 3Academy of Primary Care, Hull York Medical School, University of Hull, Hull, UK
  4. 4Nuffield Department of Primary Care Health Sciences, Oxford University, Oxford, UK
  5. 5Faculty of Health Sciences, School of Paramedical PeriOperative and Advanced Practice, University of Hull, Hull, UK
  6. 6Faculty of Medicine and Health Sciences, Norwich Medical School, University of East Anglia, Norwich, UK
  7. 7Innovations in Dementia, Exeter, UK
  8. 8Faculty of Brain Sciences, Division of Psychiatry, University College London, London, UK
  9. 9College of Health and Life Sciences, Aston Pharmacy School, Aston University, Birmingham, UK
  10. 10Living with Dementia, N/A, UK
  11. 11College of Life Sciences, School of Allied Health Professions, University of Leicester, Leicester, UK
  1. Correspondence to Dr Leanne Greene; l.m.g.greene{at}


Introduction The 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 analysis The 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 dissemination Ethical 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 number CRD42022304679.

  • sleep medicine
  • primary care
  • geriatric medicine
  • dementia

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  • Twitter @DrLeanneGreene1, @joannelreeve, @drlouiseallan, @gill_livingston, @maidment_dr

  • Contributors The idea for the review was conceived as part of the wider NIHR202345 funding with inputs from CF, GW, LG, AH, JR, AK, AA, MM, IM, LA, CB, SS, NB, GL, GR, AM-L, JB, AL, LS, RL and MK. LG prepared the protocol as a manuscript for publication with input from GW, CF, AH, JR, AK, AA, MM, IM, LA, SS, NB, GL, GR, SB, AM-L, JB, AL, CB, LS, RL, MK, JvH. All authors contributed to subsequent revisions and approved the protocol prior to its submission. CF is the guarantor.

  • Funding This project is funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research (NIHR202345).

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the 'Methods' section for further details.

  • Provenance and peer review Not commissioned; externally peer reviewed.