How can pain and other health problems complicate sleep care for people with dementia and their families?

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Sleep disturbances are common among people with dementia and can distress both them and their families. People with dementia live with an average of five other long-term conditions (LTCs), but little is known about how LTCs affect dementia and sleep.

Researchers explored this within the DREAMS START (Dementia Related Manual for Sleep; Strategies for relatives) trial, which tested a multi-component intervention delivered to family carers. They wanted to understand how LTC symptoms affected carers’ ability to implement DREAMS START intervention strategies.

This was a qualitative interview study recruiting participants from the intervention arm of the DREAMS START trial at English NHS sites. Participants were 17 family carers of people with dementia, other LTCs and sleep disturbances. Researchers conducted interviews using a semi-structured topic guide and analysed them using reflective thematic analysis.

The analysis identified two overarching themes. The first was a complex interaction between LTCs, sleep and dementia. LTCs, including pain, interacted with dementia symptoms to worsen sleep and physical symptoms. Carers reported dilemmas about whether to give pain relief, as they primarily understood their relatives’ sleep disturbances in terms of the dementia diagnosis.

The second theme concerned carers’ exhaustion from lack of sleep. Physical health difficulties also made it harder for carers to carry out strategies such as increasing their relative’s daytime activity.

The researchers concluded that LTCs, dementia and sleep have a complex relationship, and that the effects of LTCs in someone with dementia may be underestimated. They stressed the importance of families knowing that people with dementia need adequate pain relief. Family carers’ tiredness and illness may also mean they need support to implement strategies; otherwise, they may be unable to break the cycle of exhaustion.