The persistence, causes, and consequences of sleep disturbances in people with dementia living in care homes

Lead Research Organisation: University College London
Department Name: Division of Psychiatry

Abstract

Sleep disturbances are common in people with dementia, particularly those living in care homes. However, there is little research in this population into the persistence, causes and consequences of sleep disturbances, including whether quality of life is impacted upon. Existing studies are often small with contradictory findings. It is important to clarify these factors, as they have practical implications on how, sleep disturbances in dementia should be managed.
My proposed PhD will focus on sleep disturbances in people living with dementia in care homes in three stages, one of which is a secondary analysis on data from the ESRC funded study MARQUE (Managing Agitation and Raising QUality of lifE), to establish the causes, consequences and persistency of sleep disturbances. The MARQUE database contains longitudinal data on 1483 people with dementia from 97 care homes around England, with data collected every 4 months for 16 months (Fig 1). I have permission to use this database from the principal investigator of the MARQUE project, Professor Gill Livingston, who is also the primary supervisor of this proposed PhD.

Studentship Projects

Project Reference Relationship Related To Start End Student Name
ES/R500951/1 01/10/2017 30/09/2021
1913253 Studentship ES/R500951/1 16/08/2017 30/12/2020 Lucy Webster
 
Description Sleep disturbances are a feature in people living with dementia, including getting up during the night, difficulty falling asleep, and excessive daytime sleepiness, and may precipitate a person with dementia moving into residential care. We conducted the first systematic review and meta-analysis on the prevalence and associated factors of sleep disturbances in the care home population with dementia. Our findings show that 20% of care home residents with dementia are having clinically significant sleep problems when measured on validated informant questionnaires, but that this goes up to 70% when sleep disturbances are measured using actigraphy. This highlights the need for improvement of measurement in this population. Furthermore, this PhD also provides new knowledge on the persistence of sleep disturbances in this population from my quantitative analysis. The most frequent course in residents who had sleep disturbances at baseline was that their disturbances fluctuated in around half of the cases and persisted in around a quarter of cases over 16 months, with only a quarter having no sleep disturbances after baseline. As sleep disturbances fluctuate or persist in most residents who have them at baseline, this highlights the importance of treatment for these disturbances, as they mostly do not resolve without it. Sleep disturbances often fluctuate, suggesting that they may be amenable to treatment.
In addition, the findings of the PhD highlight that sleep disturbances have a negative impact on care home residents with dementia. Quantitatively, they are strongly associated with a lower quality of life and the prescription of sleep medications for those with symptoms of sleep disturbances of any severity or clinically significant cases, and an increase in hospital admissions for those with clinically significant cases. Qualitatively, they were also described as impacting residents in terms of agitated behaviours, their ability to engage and communicate, and daytime sleepiness and drowsiness, which sometimes leads to missing meals and drinks in the daytime and increased risk of falls, as well as further disturbing their sleep at night-time. They can impact not only the resident with sleep disturbance, but also other residents trying to sleep in the home who are disturbed, and the care home staff who feel stressed when several residents are awake in the night-time. Therefore, they are a priority for treatment and management.
Exploitation Route It would be beneficial for the results from the qualitative study on the management and causes of sleep disturbance to be used in the development of future non-pharmacological interventions, which should be a priority for future research, and would most probably need to use a range of strategies. The findings also help to aid our understanding of the meaning of the measurements that are frequently used to measure sleep disturbances in this population, and could be taken forward by others in the development of a gold standard of measurement for sleep disturbances.
Sectors Communities and Social Services/Policy,Healthcare

 
Description My findings have been used in the development of a factsheet that the Alzheimer's Society developed for family carers on understanding and managing sleep disturbances in dementia.
First Year Of Impact 2020
Sector Communities and Social Services/Policy,Healthcare
 
Description Contributed to the development and review of a factsheet that the Alzheimer's Society developed for family carers on understanding and managing sleep disturbances in dementia.
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
 
Description Yale-UCL Collaborative Student Exchange Programme bursary
Amount £2,869 (GBP)
Organisation University College London 
Sector Academic/University
Country United Kingdom
Start 11/2019 
End 12/2019
 
Description Collaboration with Yale Univeristy Geriatrics section in the Medical School 
Organisation Yale University
Country United States 
Sector Academic/University 
PI Contribution Whilst I visited Yale from November to December 2019, myself and my Yale host supervisor developed an idea for a project we could work on together to combine our shared research interests. We developed the idea and have found an appropriate dataset at Yale we will be able to use, and planned that we can publish at least one paper from the idea, if not two. I will contribute to both the analysis and write up of the project.
Collaborator Contribution Whilst at Yale, I had the chance to present the idea for the collaborative project at the monthly research in progress seminar at Yale geriatrics department. This seminar acts as a chance for junior members of the department to present and receive feedback from senior members. My Yale host supervisor will now be presenting the refined project idea to the principal investigator who is also based at Yale, and they will see if we can gain any additional funding for the idea so that we can move forward.
Impact There are currently no outputs as the collaboration is in the early stages, but it is multi-disciplinary with those involved at Yale being Geriatricians and those involved from UCL being Psychiatrists and a research psychologist.
Start Year 2019
 
Description Presentation at Alzheimer's Society Research Network volunteer meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Around 60 people who have dementia or care for someone with dementia and volunteer with the Alzheimer's Society research network, attended the networks yearly meeting, which is a day long event filled with presentations. Presented for 30 minutes on PhD topic and work.
Year(s) Of Engagement Activity 2018
 
Description Presented at Yale University Geriatric Medicine's Research in Progress monthly seminar 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presented at Yale University Geriatric Medicine's Research in Progress monthly seminar to around 20 clinicians working in the field of geriatrics, mostly geriatricians.
Year(s) Of Engagement Activity 2019
 
Description Seminar at Johns Hopkins University Memory and Alzheimer's Treatment Center 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presented to around 15 clinicians/postgraduate students at a weekly seminar held at Johns Hopkins University Memory and Alzheimer's Treatment Center in the Department of Psychiatry and Behavioral Sciences
Year(s) Of Engagement Activity 2019