In Their Own Words: How Family Carers of People with Dementia Understand Resilience

Abstract

There is a growing body of research on resilience in family carers of people with dementia, but carers’ voices are noticeably absent from it. The aim of this study was to explore carers’ definitions of resilience and their opinions on the factors associated with resilience. Twenty-one in-depth interviews were conducted in Australia with people who were currently, or had previously been, caring for a family member with dementia. Transcripts were analysed thematically and three themes emerged: the presence of resilience, the path to resilience, and characteristics of the resilient carer. Although carers struggled to define resilience, the vast majority considered themselves resilient. Carers identified a range of traits, values, environments, resources, and behaviours associated with resilience, but there was no consensus on the relative importance or causal nature of these factors. Carers also considered resilience to be domain- and context-specific, but did not agree on whether resilience was a trait or a process. These findings highlight both the importance of including carers’ voices in resilience research and the limitations of the extant literature. There is much to be done to develop a field of carer resilience research that is theoretically sound, methodologically rigorous, and reflects the lived experience of carers. A model is provided to prompt future research.

Resilience in family caregiving for people with dementia: A systematic review

“…Some viewpoints consider the entire process of caring as adversity, while other studies position the common negative outcomes reported by carers of PWD—carer burden, depression, anxiety, burn‐out, stress, lower levels of well‐being, and so forth—as the adversity which family carers must adapt to or overcome . In order to demonstrate positive adaptation, Luthar and colleagues posit that the positive adaptation must be considered and defined in the context of the adversity.…”

“…19,20 Throughout the literature on family carers of PWD, the conceptualisation of the term "adversity" varies considerably. O'Dwyer 21 proposes that adversity is different for each individual carer, and adversity can be acute or cumulative, depending on individual and life course experiences. Some viewpoints consider the entire process of caring as adversity, 22,23 while other studies position the common negative outcomes reported by carers of PWD-carer burden, depression, anxiety, burn-out, stress, lower levels of well-being, and so forth-as the adversity which family carers must adapt to or overcome.…”

Cornerstones of Support for People with Dementia: Influence on Public Awareness in Rural Slovenian Region

“…Research around the world namely show that most of caretaking for PWD is carried out by PWD relatives, mostly by their family members [35][36][37]. Their crucial role is to help PWD remain in home care as long as possible [37].…”

“…Their crucial role is to help PWD remain in home care as long as possible [37]. This often represents for them an extensive burden because PWD should not be left alone and without control [35][36][37][38]. When facing these issues, relatives of PWD are significantly assisted by programmes of the associations Spominčica which, in Slovenia, have been importantly contributed to form a friendly environment for PWD and their relatives.…”

Coping but not allowing the coping to be everything: Resilience in informal dementia care

“…Analyses ran in three phases, first, to meet objective one, to explore discrepancies and congruency between definitions of resilience in the academic literature and carers own conceptualisations, interview data were analysed using a framework (Ritchie, Spencer, & O'Connor, ). ID takes a ‘flexible approach’ avoiding restrictive line by line coding.…”