Developing tailored primary care management of sleep problems in people with dementia and mild cognitive impairment
Background
Sleep disturbance often affects daily living for people living with dementia or memory problems and can make it difficult for carers to cope. People often ask their doctor for medicines to help with sleep.
Help needs to be tailored to the individual. Many different things can upset sleep. Medicines help some people, but sleep medicines used long-term can be harmful or stop working. For some people, non-medicine treatments, given either on their own or in combination with tablets, may be better. Different people need different approaches to help. Doctors, patients and carers should work together for the best tailored care but have told us they need help to do that.
Project aims
The project will develop and test a tool to help patients, carers and professionals produce tailored care plans that meet the sleep-related needs of people with dementia or memory problems and their carers, whilst reducing harm from sleeping medicines. The project will fill in the gaps using new research that gathers expertise from patients, carers and professionals and from existing research on tailoring care for sleep. Findings will be shared with patients, carers and staff to design a tool that supports a tailored approach to managing sleep in primary care. The project will test the tool using a small trial of 64 people across eight sites in England to understand whether it can work. If the small trial is successful, a large trial will be run to determine whether the new tool is helpful for patients and carers.
Project Activity
- The project will involve a realist review; focus groups; consultation; observation; and then pathway design. It will involve national testing across 100 sites in a trial.
- People with dementia (from DEEP and Alzheimer’s Society) and their families and carers (from TIDE) told the project researchers that sleep problems matter to them. They helped develop the idea about the importance of tailored care and shared that they want to continue to work with the researchers to complete the research.
- Development and delivery of the intervention in progress; Recruitment for feasibility trial due to commence March 2024.
Anticipated Impact
- New pathway to improve care
- Enhanced primary care practice in dementia.
Who is involved
- Anne Killett, University of East Anglia
- Chris Fox, University of Exeter, Norfolk & Suffolk NHS Foundation Trust
Papers and resources
We will produce summaries for different audiences. DEEP, Alzheimer’s Society and TIDE members will help us prepare and share resources videos for patients and carers that help them access tailored sleep care. We will inform professionals through academic and professional journals, conferences, events, and social media. We will hold workshops for people with dementia or memory problems, carers, prescribers, and people who decide on and provide health and social care services, to share our findings.
Recent papers: Greene L, Aryankhesal A, Megson M, et al Understanding primary care diagnosis and management of sleep disturbance for people with dementia or mild cognitive impairment: a realist review protocol BMJ Open 2022;12:e067424. doi: 10.1136/bmjopen-2022-06742
