Daughters’ experiences of shared caregiving to a parent with dementia

Abstract

Background Siblings often share in the care of parents with dementia, but little is known about how care is shared. Research suggests that in comparison with their brothers, sisters provide the majority of care to a parent with dementia and this can contribute to the sisters experiencing poorer health outcomes. There is limited knowledge about how to guide siblings who share in the care of a parent with dementia. Aim Our qualitative descriptive study sought to explore the experiences of adult daughters sharing care responsibilities with their siblings. The study protocol was approved by institutional (University of Toronto and Baycrest Health Sciences) research ethics boards. Materials & methods Thirty‐four daughters participated in an online qualitative survey. Data were analysed using Braun and Clarke’s (Qualitative Research in Psychology, 3, 2006, 77) 6‐step process. Results In an overarching theme, daughters expected shared caregiving with their siblings. They conceptualised this to be a practice of being equitable in dividing care responsibilities and fulfilling a supportive role for a parent with dementia; however, this expectation was not met by most daughters. Two subthemes were identified: (a) factors facilitating/constraining shared caregiving and (b) consequences of sharing care. The findings highlight the importance of understanding shared caregiving among siblings when caring for a parent with dementia. Discussion Results from this study suggest that although shared caregiving is often the goal, factors such as gender roles, geographical proximity, caregiver expertise/skill set and work schedules affect caregivers’ abilities to share caregiving. These factors affected whether daughters viewed the caregiving situation as being shared equitably or inequitably, and this led to feelings of acceptance or resentment of their sibling’s contribution to the care of their parent. Conclusions Healthcare providers can utilise these findings to better support adult–child caregivers negotiating care with their siblings.

Brothers and sisters sharing in the care of a parent with dementia

“…It suggests care tasks are shared in the context of many different factors including expertise, personality, comfort, and practical issues. Participants in our study echoed previous research findings ( Kokorelias et al, 2020) by suggesting equitable caregiving may improve the relationship quality between siblings caring for a parent with dementia. Healthcare professionals can facilitate quality relationships by helping siblings recognize one another's strengths and practical issues that affect caregiving.…”

“…Brothers in our study made contributions to non-functional tasks such as providing emotional support, financial support, and quality time, based upon their comfort with providing those tasks. In addition to expertise, personality, and comfort, the influence of gender on division of caregiving tasks may be also mediated by several other variables such as relationship, socioeconomic status ( Bartlett et al, 2018 ; Kokorelias et al, 2021 ), situational factors (e.g., location and employment) ( Kokorelias et al, 2020 ), gender ( Xiong et al, 2020 ), and cultural background of the caregiver ( Liu et al., 2021 ).…”

“…For brother–sister caregiving dyads, division of caregiving tasks is rarely equal, but it can be equitable. Equitable caregiving has been defined as the “distribution of caregiving tasks among siblings as being fairly shared in the context of facilitators or constraints” ( Kokorelias et al, 2020 , p. 3). Our study expands our understanding of how equitable caregiving can be achieved.…”

Caregiver burden, mental health, quality of life and self- efficacy of family caregivers of persons with dementia in Malaysia: Baseline results of a psychoeducational intervention study

“…Sharing of caregiving responsibilities is reported in other research, such as, in the United States of America (USA) [39,41,42] and Iran [5]. In shared caregiving responsibilities women, for example sisters in mixed-gender siblings, are reported to take the lead in the caregiving role [42]. The mean caregiving hours are reported to be around 18 hours per day in the current study.…”

Experiences of Japanese women simultaneously caring for children and older people: An ethnographic study

“…A 1992 meta-analysis of gender differences in caregiving found that women tended to provide more personal care, carried out more household tasks, and experienced higher levels of subjective burden than men [ 18 ]. A 2021 Canadian study also reported that women are more likely to be the primary caregivers for multiple family members [ 19 ]. In Japan, until 1947, there was a formal family-based system of inheritance, which reinforced strong gender role divisions.…”