Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study.

BACKGROUND: The number of people living with dementia (PLWD) in Aotearoa New Zealand (NZ) was estimated at 96,713 in 2020 and it is anticipated that this number will increase to 167,483 by 2050, including an estimated 12,039 Maori (indigenous people of NZ) with dementia. Experiencing urinary incontinence (UI) or faecal incontinence (FI) is common for PLWD, particularly at the later stages of the disease. However, there is no robust estimate for either prevalence or incidence of UI or FI for PLWD in NZ. Although caregivers rate independent toilet use as the most important activity of daily living to be preserved, continence care for PLWD in the community is currently not systematised and there is no structured care pathway. The evidence to guide continence practice is limited, and more needs to be known about caregiving and promoting continence and managing incontinence for PLWD in the community. This project will seek to understand the extent of the challenge and current practices of health professionals, PLWD, caregivers and family; identify promising strategies; co-develop culturally appropriate guidelines and support materials to improve outcomes; and identify appropriate quality indicators so that good continence care can be measured in future interventions. METHODS AND ANALYSIS: A four-phase mixed methods study will be delivered over three years: three phases will run concurrently, followed by a fourth transformative sequential phase. Phase 1 will identify the prevalence and incidence of incontinence for PLWD in the community using a cohort study from standardised home care interRAI assessments. Phase 2 will explore continence management for PLWD in the community through a review of clinical policies and guidance from publicly funded continence services, and qualitative focus group interviews with health professionals. Phase 3 will explore experiences, strategies, impact and consequences of promoting continence and managing incontinence for PLWD in the community through secondary data analysis of an existing carers' study, and collecting new cross-sectional and longitudinal qualitative data from Maori and non-Maori PLWD and their caregivers. In Phase 4, two adapted 3-stage Delphi processes will be used to co-produce clinical guidelines and a core outcome set, while a series of workshops will be used to co-produce caregiver resources.

'People haven't got that close connection': meanings of loneliness and social isolation to culturally diverse older people.

Objectives: Social isolation and loneliness among older people are known to have negative effects on health and wellbeing. Few studies, however, have enabled older people to define these concepts in their own terms. This paper based on research in Aotearoa, New Zealand is the first to comparatively outline the meanings of loneliness and social isolation from the perspective of four ethnically diverse groups of older adults (Maori, Pacific, Asian, and NZ European).Method: We interviewed 44 older people and conducted three focus groups with 32 older people. We used thematic and narrative analyses.Results: Loneliness and social isolation were conceptualized as interconnected concepts described as a 'look and feel', a 'state of mind' and as a 'lack of desired companionship'. Participants conveyed sophisticated understandings of the structural underpinnings of both loneliness and social isolation as multi-dimensional, complex, and situated.Conclusions: Older people describe complex and culturally- nuanced understanding and experience of social isolation and loneliness. More culturally appropriate services, greater mental-health support and more service provision on weekends and evenings are needed.

Befriending Services for Culturally Diverse Older People.

Befriending services may address loneliness and social isolation amongst older people. However social diversity is rarely reported in investigations of befriending services. The views of non-users are also rarely explored. In this research, we explored older adults' experiences of, and attitudes towards, a befriending service, among service users and non-service users, drawing on interviews and focus groups with 76 older adults, 10 volunteer visitors, and 20 service providers. Participants agreed that the befriending service helped alleviate social isolation and loneliness and that supportive services to foster connection are needed. Barriers to engagement included lack of knowledge, appropriateness of services and feeling undeserving. The befriending service was most successful when a match went beyond a transactional 'professional-client' relationship to resemble genuine friendship, underpinned by mutual interests and norms of reciprocity and reliability. We also identified five clear ideas about what characterizes an ideal supportive service; supported opportunities for getting out, genuine and reciprocal relationships, reliability, visitor characteristics, and connecting people to their culture. Befriending adds to social networks, and enhances connectedness to the community. Loneliness is alleviated when mutually beneficial and genuinely reciprocal relationships develop. However, group interventions or connections to community groups may be more appropriate for some.

'Because it's the wife who has to look after the man': A descriptive qualitative study of older women and the intersection of gender and the provision of family caregiving at the end of life.

BACKGROUND: Research indicates that women are the primary family caregivers for others at life's end and, because of ageing populations, will keep fulfilling this role as they age. Yet, little is known about how the gendered nature of caregiving contributes to older women's understandings of providing care. AIM: To explore how gender norms constructed older women's views about the appropriate roles of women and men in providing palliative and end-of-life care for family members. DESIGN: Six focus groups were conducted with 39 community dwelling older adults (36 women and 3 men) using two vignettes to prompt discussion about experience of end of life caring and attitudes towards Advance Care Planning. This article reports on data gathered from female participants' reactions to Vignette 1 which prompted significant discussion regarding the intersection of gender and older women's caregiving experience. SETTING/PARTICIPANTS: A total of 36 women in the age ranges of '50-59 years' through to '90-99 years' from New Zealand. RESULTS: Three themes regarding gender and caregiving were identified: the expectation women will care, women's duty to care and women's construction of men in relation to caregiving and illness. The women adhered to stereotypical gender norms that regard women as primary caregivers. There was little connection between the burden they associated with caregiving and this gender construction. CONCLUSION: The expectation that older women will provide end-of-life care even when experiencing considerable burden is an unacknowledged outcome of gender norms that construct women as caregivers.