A 'personhood paradox': Care partners' experiences supporting people with dementia and incontinence.

Abstract

Globally, 50 million people live with dementia and mostly receive care at home. Urinary, faecal and functional incontinence is common in this population and increases care demands. This study explores care partners' experiences managing continence care for people with dementia in Aotearoa New Zealand. The data are drawn from a cross-sectional qualitative study with 18 care partners of people with dementia and incontinence in mid and northern regions of Aotearoa New Zealand. Participants were interviewed face-to-face from June 2022 to April 2023. Data were analysed using Interpretive Phenomenological Analysis. Six Generalised Experiential Themes emerged. Care partners engaged in autobiographical and biographical meaning-making to interpret behaviours and maintain the personhood of people with dementia, focusing on dignity, identity, and social inclusion. However, caregiving often undermined care partners' personhood due to the physical and emotional demands of continence care. Access to resources was challenging, and healthcare support was often perceived as inadequate. Some care partners' strategies to find meaning and joy in everyday life contributed to resilience, while others experienced stress, fatigue, and burnout. Care partners used personal knowledge to support personhood, especially in social engagement. Uncertainty in managing incontinence led to self-doubt, exacerbated by the medicalised nature of continence care, which involves intimate attention beyond typical caregiving. Timely, credible advice could reduce uncertainty, but many found seeking resources overwhelming. Balancing their own well-being with caregiving highlights the need for support systems addressing the requirements of both care partners and people with dementia.