Sleep Quality Questionnaires in People Living with Dementia and Their Spousal Care Partners, 2022-2023

Palmer, Lesley (2024). Sleep Quality Questionnaires in People Living with Dementia and Their Spousal Care Partners, 2022-2023. [Data Collection]. Colchester, Essex: UK Data Service. 10.5255/UKDA-SN-857373

In the UK 45% of people with Alzheimer's experience sleep disturbances which negatively impact their quality of life. Poor sleep can compound symptoms such as memory loss, cognitive decline, and exacerbate behaviours such as agitation and aggression. Sleep disturbance can also negatively impact their care partners resulting in increased stress, depression, and burnout.

When the sleep of both people with Alzheimer's and partners is affected, remaining at home becomes more challenging and sleep disruption has been attributed as a significant contributing factor to people with Alzheimer's being admitted into care earlier than necessary. Research demonstrates that light therapy can improve sleep and reduce sleep disruption in mild Alzheimer's. Light therapy research undertaken in the home environment has also demonstrated benefits to care partners such as improved sleep duration and sleep/wake cycle.

We propose a new technology ('NuroLight') which offers light therapy, using off-the-shelf products, evidence-based research and smart technology. This aims to improve the quality of life for both the person with Alzheimer's and their partner, reduce care partner burnout, and subsequently reduce early admittance to care for the person with Alzheimer's. With more people with Alzheimer's living in the community and public spending under pressure, supporting people to live well at home is a priority.

Data description (abstract)

People living with dementia experience higher levels of sleep dysfunction compared to healthy older people. Poor sleep is common in Alzheimer’s disease (AD) and dementia with Lewy Bodies (DLB); two common causes of neurodegenerative dementia comprising of approximately 70% of diagnoses. Sleep dysfunction in dementia has been attributed as a significant contributing factor to early admittance into care. (Sloan, 2015, Saheed, 2017, Figuerio et al, 2015, Forbes et al, 2014). Sleep is important for quality of life, health and well-being and when the sleep of both the person with dementia and their caregiver is affected, supporting individuals to live independently at home becomes more challenging. A significant contributing factor to a move out of the home prematurely into institutional care is sleep dysfunction in the person with dementia, resulting in caregiver exhaustion and burnout. Given the complexity of sleep problems, there is a need for tools which can evaluate poor sleep in populations living with dementia.

The Nurolight study sought to explore the impact of poor sleep on people living with dementia and their care partners.

Using the Pittsburgh Sleep Quality Index; a tool designed to evaluate sleep disturbances in populations. It comprises Comprising of 19 self-reported items belonging to one of seven subcategories: subjective sleep quality, sleep latency, sleep duration, habitual sleep efficiency, sleep disturbances, use of sleeping medication, and daytime dysfunction. An additional section of 5 questions relates to partner/roommate reporting and are not scored.

The Nurolight assessed 11 participants (M=6, F=5). The component scores are summed to produce a global score (range 0 to 21). Higher scores indicate poor sleep quality, with a score greater than 5 suggesting significant sleep difficulties. Findings from this study indicate that 81% participants were considered to have significant sleep difficulties.

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