Daughters' experiences of shared caregiving to a parent with dementia

Kristina M Kokorelias; Lily Nguyen; Genalyn Elane; Marina Bastawrous Wasilewski; Nira Rittenberg; Jill I Cameron

doi:10.1111/scs.12901

Daughters' experiences of shared caregiving to a parent with dementia

Scand J Caring Sci. 2021 Sep;35(3):853-859. doi: 10.1111/scs.12901. Epub 2020 Aug 11.

Authors

Kristina M Kokorelias¹, Lily Nguyen², Genalyn Elane², Marina Bastawrous Wasilewski³, Nira Rittenberg², Jill I Cameron⁴

Affiliations

¹ Rehabilitation Sciences Institute, Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
² Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada.
³ St. John's Rehab Research Program, Sunnybrook Research Institute, St. John's Rehab, Toronto, ON, Canada.
⁴ Department of Occupational Science and Occupational Therapy, Rehabilitation Sciences Institute, Faculty of Medicine, University of Toronto, Toronto, ON, Canada.

PMID: 32781486
DOI: 10.1111/scs.12901

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.

Keywords: caregiving; daughters; dementia; qualitative; sibling.

MeSH terms

Adult
Adult Children
Caregivers
Dementia*
Humans
Male
Nuclear Family
Parents*