It "Made a Huge Difference when He had a Dry Bed in the Morning": Impacts of Dementia-Related Incontinence on Unpaid Carers' Sleep, Health, and Quality of Life.

Abstract

Incontinence is a common consequence of dementia. Incidence is more likely at night, having repercussions for sleep quality and the exacerbation of waking symptoms of dementia as well as negative carer affect. However, the person-centred experience is underrepresented. A thematic analysis was conducted on continence-related comments from a pool of 94 carers participating in a postal sleep survey. Then, a narrative analysis was used on interview transcripts from 13 participants who took part in follow-up interviews after their care recipient had transitioned into aged residential care. Themes illustrate how promoting continence or managing incontinence impacts unpaid caregivers in terms of sleep disruptions and subsequent wellbeing. These are presented alongside overarching narratives of sleep, continence, and caregiving. Including the physical nature of continence-related support and its impact on sleep practices, as well as the emotional impact of balancing sleep needs alongside caregiving responsibilities and overall wellbeing with ageing. Toilet use and (in)continence needs can have profound impacts on sleep and wellbeing within dementia care, having the potential to jeopardise the overall home care situation. Findings will inform future research in the field of sleep and ageing as well as strategies for supporting families affected by dementia. In particular, the results will inform the production of a core outcome set comprising appropriate quality indicators for people living with dementia, their caregivers, and family so that adequate continence care can be assessed and supported in future interventions.