It “made a huge difference when he had a dry bed in the morning” : impacts of dementia-related incontinence on informal carers sleep, health, and quality of life : a thesis presented in partial fulfilment of the requirements for the degree of Master of Science in Health Psychology at Massey University, Palmerston North, New Zealand

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Incontinence is increasingly recognised as a symptom of dementia and is more common at night, having repercussions for the sleep status of people with dementia and their informal carers. This is important as sleep disruptions can exacerbate some of the waking symptoms of dementia, as well as affect the carers capacity to care, influencing their health, wellbeing, and quality of life. Despite this, the person-centred experience of informal carers managing dementia-related incontinence and the subsequent impacts is largely underrepresented. Thematic analysis was used on continence-related comments within responses from 526 carers participating in a confidential sleep survey. Further narrative assessment was used on relevant follow-up interview data provided by a pool of 20 carers recruited from the initial survey. Basic and global themes concerning continence in relation to the sleeping and waking lives of informal carers and those they support will be presented, alongside overarching narratives of sleep and caregiving. These include content concerning the progressive changes to toileting needs and sleep disruptions with ageing and dementia-related decline; incontinence and its management creating a significant issue for sleeping and waking life; and how incontinence ultimately impacts carers quality of life and ability to cope. This thesis illustrates how incontinence can have a profound impact on sleep and wellbeing within dementia care, having the potential to jeopardise the overall informal care situation. Findings will inform future research on continence, sleep, and ageing within dementia care, as well as strategies for supporting those affected by dementia. In particular, the findings will be used to inform the co-production of a core outcome set within a wider research programme that comprises appropriate quality indicators for people living with dementia, their caregivers, and whānau, so that good continence care can be measured in future complex interventions, and carers have better access to education and support which enables them to continue their role safely and effectively.