Authors' objectives: There are expected to be 850000 people in the UK in 2015 living with dementia, two-thirds live in the community, and their numbers are increasing rapidly as the population ages. UK dementia care costs £26.3 billion. Sleep disturbances in dementia are common and varied, including reduced night time sleeping, night wandering and excessive daytime sleepiness. Sleep influences all aspects of life and is important in day-to-day function and quality of life. Family carers are often woken by their relatives sleep difficulties and become very tired. They may feel depressed and be unable to continue caring at home. Night time care costs can be unaffordable for those who wish to continue caring at home. We propose to develop (in consultation with families and people with dementia) an intervention to help people with dementia and sleep disturbance living at home, based on the existing evidence as to what works. Families will be very involved. In practice, most people with dementia in the study, will have carers with them most nights, as they will either be referred as causing disturbance to carers sleeping in the same house, or have carers because it s unsafe to leave them alone. While developing the intervention we will put it in a manual so it can be used by others. We will then test feasibility for a full-scale trial through a small randomised study (our power calculation suggests 40 participants in intervention and 20 in non-intervention group). We will measure whether people attend, the need for sleep medication and also use other scales we would use in a full scale study, e.g. CSRI which details services used (to consider usual practice in the group we are not intervening in and cost, carers sleep and we will ask families about their experience. The whole study will take 21 months. As the causes of sleep disturbances in dementia differ, our intervention will be tailored to the person with dementia s individual problems. It will be delivered individually, through a partnership of health workers and family carers. The health worker will be a supervised psychology graduate, so that it can be rolled out nationally if successful. We have done this with other similar projects and our intervention has continued to work over at least two years. Our team includes a family carer and experts in sleep; dementia; behaviour interventions and statistics. We will work collaboratively encouraging family carers to try techniques, and write in their own manual what works for them. We will begin with an educational session for all family carers and patients if able covering sleep and circadian processes and how sleep and brain function change with ageing and dementia. We will find out about the timing of the person s sleep-wake schedule using one week of actigraphy (a re-usable wristwatch which monitors movement and sleep rhythms). To improve night-time sleep we will work with the dyad to use cues that influence the person's biological rhythms e.g. exposure to daylight, outdoor/physical activities, regular meal timing and indoor routines, regular timing of bed and rising, morning wake-up light, standardised meal times and establish a pre-bed settling routine and management of wakeful episode and daytime naps. In the last session, family carers will agree a future maintenance plan using techniques that were acceptable and successful for them and keep their personalised manual. We have previously found this is associated with long term effectiveness.

Project Status: Completed

URL for project: http://www.nets.nihr.ac.uk/projects/hta/1422006

Year Published: 2018

URL for published report: https://www.journalslibrary.nihr.ac.uk/programmes/hta/1422006#/

English language abstract: An English language summary is available

Publication Type: Not Assigned

Country: England, United Kingdom

Organisation Name: NIHR Health Technology Assessment programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk

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