TIMES: Advanced generalist support for people living with dementia

Sleep disturbances are a common problem among individuals living with dementia – affecting up to 90% of people. They can cause many problems including night time confusion, falls, and distress.

Sleep problems also have a significant impact on caregivers and family members. Sometimes this can lead to a breakdown of care and even necessitating admission to a care home.

However understanding why the sleep problem is happening and what can best be done to help is complex. Often medicines are used but these can be unhelpful and even harmful. Many people are concerned about the potential over-medicalisation of sleep problems in people living with dementia.

Primary care uses the skills of advanced generalist medicine to provide whole person care for individuals experiencing sleep problems. This approach may help with avoiding overmedication. But we know there are a lot of challenges to doing this in practice.

Overcoming these barriers, and evaluating the impact of a new whole person approach to managing care needs in this group, is the focus for this research.

TIMES - Tailored Interventions for Managing Sleep Disturbances in Dementia

This study asks can a new whole person approach to understanding and addressing problems with sleep help improve the daily lives of people living with dementia.

It is a 5 year research project with 3 main pieces of work. Firstly we have designed a new generalist intervention. Next we will see if it is possible to run a Randomised Controlled Trial (RCT) of our new model (a feasibility study). If we can, we’ll run a full RCT to test the impact of our new approach on patient, practitioner, health care and health economic outcomes.

We have done two pieces of work to develop our intervention.

First we looked at what is already happening. We undertook a realist review of published research to understand what we already know about how to support this patient group. We also spent time in GP practices observing everyday practice – to better understand how care works on the ground. From this, we were able to describe a number of key elements that would be needed in our new intervention.

Next we worked with patients, carers and clinicians to turn what we’d learned from this work into a new intervention for practice. We ran a series of co-creation workshops where we invited everyone to consider what we had learned and how we could put that into practice.

As a result we have described a novel advanced generalist consultation approach to explore, understand and address people’s complex sleep-related health needs. We’re now working with clinicians, practice teams and IT experts to integrate this new approach into staff training, practice IT systems and consultation approaches.

We’ll shortly be starting a feasibility study to examine if it would be possible to run a full RCT of the new way of working. If that is successful, we’ll carry on to a pilot and full RCT.

Professor Joanne Reeve is the Principal Investigator. The Co-Investigators are:

• Andrea Hilton, Molly Megson, Annabelle Machin (Hull York Medical School)
• Chris Fox (Exeter)
• Anne Killett (Co-CI) (UEA)

The TIMES study website

Hull York Medical School story about the study: Study paves the way to improve tailored care for people living with dementia and sleep problems

Papers from the realist review:

Greene L, Aryankhesal A, Megson M, et alUnderstanding primary care diagnosis and management of sleep disturbance for people with dementia or mild cognitive impairment: a realist review protocolBMJ Open 2022;12:e067424. doi: 10.1136/bmjopen-2022-067424

Understanding primary care diagnosis and management of sleep disturbance for people with dementia or mild cognitive impairment: a realist reviewJessica Blake, Aidin Aryankhesal, Louise Allan, Clive Ballard, Simon Briscoe, Niall Broomfield, Leanne Green, Andrea Hilton, Jayden van Horik, Mizanur Khondoker, Anne Killett, Alpar Lazar, Rachael Litherland, Gill Livingston, Ian Maidment, Antonieta Medina-Lara, Molly Megson, Joanne Reeve, George Rook, Sion Scott, Lee Shepstone, Geoff Wong, Chris FoxBritish Journal of General Practice 2023; 73 (suppl 1): bjgp23X734169. DOI: 10.3399/bjgp23X734169