I just can't please them all and stay sane: Adult child caregivers’ experiences of family dynamics in care-giving for a parent with dementia in Australia

Abstract

Family caregivers of people with dementia who live within the community often experience stress and poor quality of life due to their care-giving role. While there are many factors that affect this, one influential factor is the family context. This study focussed on adult child caregivers. It examined the specific ways that family dynamics contribute to adult child caregivers' distress in the context of caring for a parent with dementia. Semi-structured interviews were conducted with 17 participants who were adult child primary caregivers for a parent with dementia who was living within the community. Interviews were audiotaped and transcribed verbatim. Transcripts were analysed using thematic analysis. Four themes were identified that represented areas of particular concern and distress for the caregivers: family expectations and caregivers' lack of choice in adopting the care-giving role; denial and differential understandings of dementia among family members; differential beliefs and approaches to care-giving among family members; and communication breakdown between family members. The findings demonstrate several avenues for further research including the development of interventions to support adult child caregivers and address problematic family dynamics within the context of caring for a parent with dementia.

Caregiving Choice and Caregiver-Receiver Relation: Effects on Psychological Well-being of Family Caregivers in Canada

“…This study suggests that family caregivers' psychological well-being is influenced by their relationships with care receivers, consistent with previous findings (Pinquart & Sörensen, 2011). The results also support theoretical assumptions on the basis of caregiving stress process models, sense of control, and meaningful choice (Dowding, 1992;Leotti et al, 2010;Pearlin et al, 1990), as well as previous studies (Longacre et al, 2014;Tatangelo et al, 2018) showing that family caregivers with perceived choices in caregiving reported better psychological well-being than those without choice.…”

“…In some cases, it is assumed that a certain family member has more time or capability for caregiving responsibilities, and so that family member becomes the caregiver. Another study found that some people choose to become family caregivers because they do not trust their siblings' capability in taking care of aging parents (Tatangelo, McCabe, Macleod, & Konis, 2018). Therefore, an individual's perception of caregiving choice is affected by many relevant factors in the caregiving context.…”

<p>The art of maintaining everyday life: collaboration among older parents, their adult children, and health care professionals in reablement</p>

“…Whereas adult children who not reside with their parents can be less inclined to offer them support,17,18 ones whose parents’ spouses have passed away or cannot provide care often take responsibility for caring for their parents. At the same time, adult children who have to share different responsibilities and tasks with siblings in caring for their aging parents are more liable than spouses to experience conflict in the family 19,20…”

Caring for home‐dwelling parents with dementia: A qualitative study of adult‐child caregivers' motivation

“…In our study, self‐determination was expressed by caregivers' ability to decide which tasks they would do to help their parents and when to do them. Feeling obligated to assume in caregiving responsibilities can lead to a heavier subjective burden among adult children (Conde‐Sala et al., 2010; Tatangelo, McCabe, Macleod, & Konis, 2018). Therefore, being autonomous in the caregiver role is important and, in our study, adult children often seemed to have internalized the value of caregiving, performing tasks without talking about the need for autonomy.…”