Relational aspects of mastery for frail, older adults: The role of informal caregivers in the care process

Abstract

Frail, older care recipients are often thought of as individuals with a decreased mastery of everyday life skills. Various authors have proposed to acknowledge a relational dimension of mastery, defined as the ability to maintain control over one's life with the help of others. This study explores how frail, older adults experience relational aspects of mastery and the role of their informal caregivers in maintaining these aspects of mastery over the care process. Qualitative interviews (N = 121) were conducted in 2016 with potentially frail, community‐dwelling older adults participating in the Detection, Support and Care for Older people: Prevention and Empowerment (D‐SCOPE) project. A secondary analysis of 65 interviews reveals that, according to frail, older adults, informal caregivers contribute in various ways to the preservation of their mastery. This differs across the four elements of care: caring about (attentiveness), taking care of (responsibility), care‐giving (competence), and care‐receiving (responsiveness). However, in some cases, older adults experienced a loss of mastery; for example, when informal caregivers did not understand their care needs and did not involve them in the decision, organisation, and provision of care. A relational dimension of mastery needs to be acknowledged in frail, older care recipients since stimulating mastery is a crucial element for realising community care objectives and person‐centred and integrated care.

The care receivers perspective: How care‐dependent people struggle with accepting help from family members, friends and neighbours

“…We saw a high degree of reluctance to ask, especially in relationships where reciprocity is the norm. This finding also shows that we cannot see care recipients as only passive and dependent, as was also noted by Lambotte et al ().…”

Experiences of people with memory disorders and their spouse carers on influencing formal care: “They ask my wife questions that they should ask me”

“…As in Lambotte et al (2019), our results showed how family carers can enact their agency for the behalf of the person with memory disorder. In our findings, they provided a larger share of the accounts concerning influencing care.…”

“…The common understanding of agency has been criticized for being language-centered (Boyle, 2014) and too heavily based on cognitive and intellectual abilities (Kontos, 2004). Even though our study showed that cognitive decline makes a person’s own involvement more difficult (also in Bosco et al, 2019; Lambotte et al, 2019), our study demonstrated that the abilities of people with memory disorders are very diverse and strongly connected to each individual’s personal situation. Our data show that people with memory disorders can express their preferences, even if the way they express themselves might be less determined or fluent than of people with intact cognition.…”

“…Of the four themes, taking control required strong agency and the most active and autonomous decision-making (Bosco et al, 2019; Smebye et al, 2012). Especially, the spouse carers took the power to decide whether to accept the care offered to the person being cared for (Lambotte et al, 2019). We recognize similar findings than Mikkola (2005) that spouses insisted on their right to define the terms and conditions of use of the services.…”

“…Family members are important not only as providers of care and support but also as contributing to the agency of people with memory disorders (Bosco et al, 2019). For frail older adults who have reduced ability to influence their personal situation, a family member can help by making their putative views and wishes visible (Lambotte et al, 2019). Thus, the informal carer can act as a "substitute agent" or use their agency for the benefit of the person who receives the care.…”