Hypothesis / aims of study
Promoting continence and managing incontinence for people with dementia living in the community often requires around the clock vigilance. For example, sleeplessness from constant watchfulness can contribute to exhaustion, potentially jeopardising caregiving in the community. Currently, we do not know how care partners of people with dementia in Aotearoa New Zealand manage these challenges. Rates of moving into aged residential care are much greater for people with dementia than for older people without dementia, and incontinence is consistently identified as a predictor for institutionalisation in this population [1]. This suggests that more can be done to support care partners, whānau and family.
The study is part of a larger project that has identified the prevalence, incidence and risks of urinary incontinence and faecal incontinence for people with dementia living in the community; examined the current practices of health professionals, people with dementia and their care partners; and co-created resources intended to improve outcomes for people with dementia and their care partners.
The aim of this sub-study was to investigate the experiences and consequences of promoting continence and managing incontinence from the perspective of people with dementia living in the community, and their care partners. This article focuses on the experiences of care partners only.
Study design, materials and methods
Sample and setting: A convenience sample of care partners (N=18) of people with dementia who were experiencing continence issues; self-selected volunteers in response to approaches from collaborating community group networks, and advertisements across the upper region of North Island, Aotearoa New Zealand.
Design: A cross-sectional qualitative study. Care partners were invited to take part in face-to-face guided interviews.
Analysis: Interpretative phenomenological analysis (IPA). Using IPA in the context of this study, researchers sought to understand the experience of promoting continence or managing incontinence for a person with dementia from the perspective of care partners. The data coding procedure and process followed the seven steps of IPA (Figure 1).
Steps 1-5: YO thoroughly reviewed the full transcripts until completely immersed in the data. Notes were diligently taken, highlighting relevant units of meaning and emerging themes of significance. Themes were identified based on their relevance to the research question. Subsequently, transcripts were coded to reflect these themes, generating a preliminary list. The transcripts underwent multiple re-readings to ensure the list was exhaustive and relevant extracts were compiled for each theme. All data were coded manually. At this stage, a second researcher (VB) was brought in to validate the analysis, interpretation, and definition of Personal Experiential Themes (PET).
Steps 6-7: Generalised Experiential Themes (GET) were developed by YO’s analysis of patterns of PET across cases. GETs underwent review by VB and were jointly discussed (VB & YO). This review process involved iterative examination, moving back and forth between GETs, PETs and raw data, with the aim of reaching consensus and ensuring internal consistency and external heterogeneity. Multiple iterations of PET and GET patterns were created before arriving at the final thematic structure (Table 1). YO and VB generated a narrative account of the themes.
Results
Care partners used (auto)biographical meaning making to interpret the behaviour and needs of a person living with dementia. Biographical meaning making refers to the care partners’ accumulated understanding of the biography and life course of the person with dementia (i.e. interpretations, assumptions and perceptions about what they are known for, who they know, how they present themselves: their identities, likes and dislikes), whereas autobiographic meaning making refers to the interpretations of the memories of the overlapping times, places and experiences of the person with dementia and the care partner. Care partners used these interpretations to help sustain personhood of the person with dementia [2]: upholding personal worth, dignity, and identity, fostering social inclusion empowerment and agency through meaningful activities, and keeping them safe and healthy. The care partner also gave emotional and affective support, while also providing the person with dementia other opportunities for affective relationships and social interactions. On the other hand, some care partners focused on the instrumentality of care work such as changing pads, dealing with hygiene and skin integrity. Viewing the person as an object afflicted with dementia and incontinence and in need of ‘treatment’ might inadvertently diminish their sense of personhood.
Providing continence care and support to a person with dementia often required constant vigilance; a lapse in attentiveness towards signs of incontinence could undermine personhood of the person with dementia (e.g. loss of dignity, poor skin health), or lead to greater demands on the care partner (e.g. assisting with additional showers or more laundry). Some care partners expressed gratitude for the support they got from religion and faith, friends, and formal continence support services. Others proactively sought out resources or information that could help them promote continence or manage incontinence for the person with dementia. However, for some, the unrelenting demands of providing continence care for a person with dementia impacted on their own sense of identity, ability to maintain friendships or paid work, and resulted in anxiety, stress, fatigue, sleeplessness. The care partners’ ongoing appraisal of negative and positive aspects of life were fundamental to future intentions to continue to provide care. When negative experiences outweighed the positive, care partners faced burnout: physical, emotional and mental exhaustion.
Interpretation of results
Care provided at home is linked to personal histories and meaning-making, and a majority of care partners’ continence care practices are motivated by a desire to do their ‘best’ to support personhood. Practices undermining personhood may arise from inadequate understanding or education concerning dementia and continence care, as well as deficiencies in health professional assistance or respite for care partners. Personhood for people with dementia is relationally constructed, and we argue that relationship-centred continence care needs to address the lived experience of care partners alongside that of the person with dementia. Vigilant continence care for people with dementia can impact on the health and wellbeing of care partners.
Concluding message
While personhood is primarily associated with the rights and dignity of people with dementia, it can also be applied to underscore the rights and needs of care partners. Promoting continence and managing incontinence whilst maintaining personhood requires someone to provide support for the person with dementia “to be who they are, which relates to their past, present, and future achievements, activities, preferences, goals, relationships, and potential for well-being.”[3] Although the intimate (auto)biographical knowledge of the person with dementia proves advantageous in devising strategies to attain this goal, care partners who undertake continence care find themselves needing to renegotiate aspects of their own lives. This renegotiation affects their capacity to simultaneously pursue the same objectives as those they are striving to maintain for the person with dementia. This paradoxical life situation suggests that continence care models and assessment practices should extend beyond bladder and bowel assessments and strategies for the person with dementia, to explicitly acknowledge care partners as individuals with needs, wishes, and roles, which extend beyond the caring role.