We would like to thank the participating people with dementia and carers, and the clinical practitioners from these trusts for referring the patients. We would also like to thank the members of the Trial Steering Committee: Esme Moniz-Cook (Chairperson), Kate Maxmin (Member), Judy Leibowitz (Member), Sue Boex (Public Member), Rosemary Copsey (Public Member), John Cape (Observer), Tabitha Kavoi (Observer), Aryana Chopra and Amal Qureshi (Observers). Rossana Horsley, Sue Boex and Rosemary Copsey gave advice throughout as expert family carers. We would like to thank Rebecca Turner and Adam Kadri for delivering the intervention. Many thanks to the Alzheimer’s Society for providing support for the project through James A Pickett’s involvement and by connecting us with the Research Network. The DREAMS START research team further acknowledges the support of the NIHR through the North Thames Clinical Research Network.
Funding acknowledgements
Camden and Islington NHS Foundation Trust and Barnet, Enfield and Haringey Mental Health NHS Trust provided funding to pay for excess treatment costs from therapist training and supervision and intervention delivery.
The research was designed, conducted, analysed and interpreted by the authors, entirely independently of the funding sources.
Contributions of authors
Kirsi M Kinnunen (DREAMS START Study Manager and Postdoctoral Researcher specialising in dementia) assisted with the editing of the manual, trained the staff for the interviews and use of the manuals, finalised the document changes made for ethics approval, developed the Trial Master File and Case Report Form, submitted the study for Health Research Authority approval and trial registration. Kirsi M Kinnunen also prepared site information packs, wrote the standard operating procedures and policies, set up databases, liaised with research and development, Local Clinical Research Networks and the sponsor for site setup, was responsible for the day-to-day management of the trial and screened the participants for eligibility and consented them. She also gathered baseline and follow-up quantitative data, analysed the actigraphy data, contributed to the quantitative analytic plan, carried out the qualitative interviews, identified themes for the initial coding framework and wrote initial parts of the report.
Penny Rapaport (Principal Clinical Psychologist in Older People) contributed to the conception and design of the study, designed and revised the manual, trained the staff for the interviews and use of the manuals, supervised the intervention delivery, devised the qualitative interview, identified themes for the initial coding framework, supervised the qualitative analysis and wrote initial parts of the report.
Lucy Webster (DREAMS START and MARQUE Research Assistant in the Division of Psychiatry) assisted with the editing of the manual, screened the participants for eligibility and consented them, gathered baseline and follow-up quantitative data, analysed the actigraphy data, delivered the intervention, carried out the qualitative interviews, identified themes for the initial coding framework, coded the majority of the qualitative interviews and wrote initial parts of the report.
Julie Barber (Senior Lecturer in Medical Statistics) contributed to the conception and design of the study, drafted the quantitative analytic plan, analysed the quantitative data and wrote initial parts of the report.
Simon D Kyle (Senior Research Fellow in Sleep Disorders) contributed to the conception and design of the study, designed and revised the manual and contributed to the quantitative analytic plan.
Brendan Hallam (DREAMS START Research Assistant in the Division of Psychiatry) assisted with the editing of the manual, screened the participants for eligibility and consented them, gathered baseline and follow-up quantitative data, analysed the actigraphy data, delivered the intervention, carried out the qualitative interviews and identified themes for the initial coding framework.
Claudia Cooper (Clinical Reader in Psychiatry) contributed to the conception and design of the study, designed and revised the manual, trained the staff for the interviews and use of the manuals and contributed to the quantitative analytic plan.
Rossana Horsley (Alzheimer’s Society Research Network Member) contributed to the conception and design of the study, commented on the manual and led the PPI contribution.
James A Pickett (Head of Research at Alzheimer’s Society) commented on the manual and co-ordinated the PPI contribution.
Anastasia Vikhanova (DREAMS START Research Intern) coded the majority of the qualitative interviews.
Colin A Espie (Professor of Sleep Medicine) contributed to the conception and design of the study.
Gill Livingston (Professor of Psychiatry of Older People) wrote the application and protocol, acted as chief investigator, contributed to the conception and design of the study, designed and revised the manual, trained the staff for the interviews and use of the manuals, wrote the ethics application and submitted it, contributed to the quantitative analytic plan, devised the qualitative interview, identified themes for the initial coding framework, wrote initial parts of the report and acts as guarantor.
All authors revised the report critically for important intellectual content and gave final approval of the version to be published.
Publications
Kinnunen KM, Vikhanova A, Livingston G. The management of sleep disorders in dementia: an update. Curr Opin Psychiatry 2017;30:491–7.
Livingston G, Barber JA, Kinnunen KM, Webster L, Kyle SD, Cooper C, et al. DREAMS-START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives) for people with dementia and sleep disturbances: a single-blind feasibility and acceptability randomised controlled trial. Int Psychogeriatric 2018;17:1–15.
Rapaport P, Webster L, Horsley R, Kyle S, Kinnunen K, Hallam B, et al. An intervention to improve sleep for people living with dementia: reflections on the development and co-production of DREAMS:START. (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives). Dementia 2018;17:976–89.
Data-sharing statement
All data requests should be submitted to the corresponding author for consideration. Access to anonymised data may be granted following review.
Patient data
This work uses data provided by patients and collected by the NHS as part of their care and support. Using patient data is vital to improve health and care for everyone. There is huge potential to make better use of information from people’s patient records, to understand more about disease, develop new treatments, monitor safety, and plan NHS services. Patient data should be kept safe and secure, to protect everyone’s privacy, and it’s important that there are safeguards to make sure that it is stored and used responsibly. Everyone should be able to find out about how patient data are used. #datasaveslives You can find out more about the background to this citation here: https://understandingpatientdata.org.uk/data-citation.
Disclaimers
This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HTA programme or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the HTA programme or the Department of Health and Social Care.
