Beyond the discourse of ‘burden’: Understanding the experiences of adult children who care for parents with dementia living at home
Keywords: Dementia, Alzheimer’s, informal care, caregiver, adult children, experience, hermeneutics, constructivist grounded theory.
Overview of Research
As our global population ages and demographics shift, an increasing number of adult daughters and sons are assuming responsibilities as care partners of their ageing parents. Much of the literature on family care partners has focused on the burden that such a role entails. Yet critical examination of ‘burden’ highlights how it restricts care and caring to the narrow parameters of task performance and the management of behaviours. In response to this critical discourse, there has been some attention to the positive relational outcomes of adult children providing care for parents living with dementia. Yet such attention remains marginal to the dominant discourse on ‘burden’. It is important that initiatives designed to support adult child caregivers – whether at the systemic, community, or individual level – be informed by a richer and more comprehensive understanding of their experiences and day-to-day care routines. To this end, our study involving two half-day workshops, which combined focus group and workshop techniques, explored the lived experiences and care practices of adult daughters (n=5) and adult sons (n=4) of parents with dementia living in homes in the Greater Toronto Area (Canada). Data analysis to date [1,2] has generated a core category, Caring Without a Script, where adult children organically navigate, negotiate, and position themselves in their caring roles. In this way, they develop their own nuanced approaches to care situated based on their perceptions of the parallel yet interacting realities of their parents for whom they care, their siblings, other “non-caregivers”, and themselves. The dialectical relationship between care decisions and approaches to care, and the humanising role of humour, manifest how adult children may cope and make meaning with their experiences. Research implications for the design of support interventions and technologies are currently being explored.
University of Toronto
Amy Hwang, University of Toronto
Lena Rosenberg, Karolinska Institutet
Louise Nygård, Karolinska Instituet
Pia Kontos, University of Toronto
Alex Mihailidis, University of Toronto
1. Hwang, A., Rosenberg, L., Kontos, P., Mihailidis, A., & Nygård, L. (2014). Beyond the discourse of ‘burden’: exploring the experiences of adult children who care for parents with dementia living at home [conference oral presentation]. Life with Dementia: Relations, 2nd International Conference at the Centre for Dementia Research, Linköping University, Norrköping, Sweden, October 15-17, 2014.
Charmaz, K. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Sage Publications, Thousand Oaks, CA, 2006.
Lehoux, P., Poland, B., & Daudelin, G. (2006). Focus group research and “the patient's view”. Social science & medicine, 63(8), 2091-2104.