A person-centred approach to addressing sleep disturbances in dementia
Current approaches to addressing sleep disturbances in this group often involve the use of sleeping medication. Medicines help some people, but used long-term can be harmful or stop working. There is a growing recognition in primary care of the importance of de-prescribing and exploring alternative interventions that are more appropriate for an individual patient.
In general sleep disorders, interventions such as sleep hygiene, stress management, and pain relief are considered. However, these approaches become more challenging/limited when dealing with the needs of people living with dementia due to the complex nature of the condition.
“Problems with sleep can be incredibly disruptive to everyday life. But managing those problems is complex because many different elements may be involved"
The TIMES 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 living with dementia and their carers, whilst reducing harm from sleeping medicines.
The project will involve a realist review; focus groups with clinicians, patients and carers; observation of patient consultations; and then pathway design via a series of expert workshops to design the intervention. It will finally involve a survey of 200 health professionals.
The study found that existing literature indicates a lack of reliable and effective interventions, which highlights the need for a comprehensive and personalised approach to care.
Molly Megson, a Research Associate at Hull York Medical School who inputted into the review, said “We've found there is lots of literature on the problem. So, people are acknowledging the problem, but very little in terms of effective interventions that have been developed yet.”
“Treating sleep disturbances is such a complex issue. The TIMES project is taking a whole-person approach to understand the holistic assessment of the person"
She continued, “TIMES also looks at the people around the patient and their environment, to understanding how we can tailor care to suit that person rather than just assuming medication might be the only answer.”
Molly is now leading on the next phase of the project involving ethnographic studies conducted by teams across the country, including the University of Exeter and University of East Anglia.
The research involves observing current practices, conducting focus groups, and interviewing various stakeholders, including GPs, nurses, patients, and carers. By gaining first-hand insights into the problem's real-life context, the study aims to inform the development of effective interventions.
Future work packages include a large-scale survey across 200 GP sites, workshops with dementia and sleep specialists to shape the intervention, a pilot feasibility study for two years, and the ultimate implementation of the intervention in primary care.
Professor Reeve said of the project, “This is a large and ambitious project – there's lots going on! But its already generating some important findings that are helping us better understand how healthcare needs to change. And most importantly, creating some innovative ideas for our novel intervention on how we can deliver this new way of working.”
The study team will produce summaries for different audiences. People living with dementia, the Alzheimer’s Society, the Dementia Engagement and Empowerment Project (DEEP), and carers from Together in Dementia Everyday (TIDE), will help the team to prepare and share resources videos for patients and carers that help them access tailored sleep care.
Molly said of the collaborative nature of the study, “An emphasis for me as a researcher, something that I think is different about TIMES is the collaborative nature of the project; to work across different universities and with panels of experts from every angle, including sleep specialists, dementia specialists, clinicians, healthcare professionals, carers, and people living with dementia.”