Life orientation in Finnish family caregivers' of persons with Alzheimer's disease: A diary study

Abstract

Family caregivers provide the majority of home care of people with Alzheimer's disease. In this study, we discuss family caregivers' life orientation and changes in life orientation during the first year after the diagnosis of Alzheimer's disease. Family caregivers' unstructured diaries (n = 83), of the first six months after diagnosis (years 2002-2004), were analyzed using qualitative content analysis. Two core themes emerged from the data analysis: the meaning of the onset of Alzheimer's disease for the lives of family caregivers, and restructuring life in its entirety. Family caregivers face challenges in their life orientation after the onset of their family members' Alzheimer's disease. Their personal milieu, familial cohesion, and conception of the future consequentially change. They face multiple challenges in the process of becoming caregivers. In this study, it was revealed that the process starts before the diagnosis of Alzheimer's disease and has an impact on their future. We conclude that family caregivers' well-being should be assessed at the time of the diagnosis of Alzheimer's disease.

Liminality as a Conceptual Frame for Understanding the Family Caregiving Rite of Passage: An Integrative Review

“…Although many caregivers had difficulty understanding and accepting the changes in their lives (Bulley et al, ), others were able to “learn new ways of being in the world” and recognize the need to see their identity in relation to the person they were caring for (Valimaki, Vehvilainen‐Julkunen, Pietila, & Koivisto, ). Reshaping relations with the care recipient in a way that was mutually gratifying and beneficial resulted in a positive new identity for some (Donorfio & Kellett, ; Galvin et al, ).…”

“…Liminal caregivers experienced a reduced participation in life and neglected themselves as they focused on “becoming” (Bulley et al, ; Buschenfeld et al, ; Donnelly, ; Galvin et al, ; Liedstrom et al, ; Navab et al, ; Rydstrom, Dalheim‐Englund, Segesten, & Rasmussen, ; Sadala et al, ). Loss of social connections led to feeling “like a prisoner in your own home” (Valimaki et al, ), A reduction in participation in life was dissatisfying for many, who strove to adapt and learn to navigate the “roller coaster” or uncertainty of a chronic illness trajectory (Donorfio & Kellett, ; Liedstrom et al, ; Rydstrom et al, ). The challenges inherent in chronic illness care made it necessary to depend on others for guidance and instructions (Galvin et al, ; Harrow et al, ; Huang & Peng, ; Williams et al, ).…”

“…However, many caregivers found ways to overcome their perceptions and interpretations (Valimaki et al, ). Embracing uncertainty in chronic illness care, by learning to flow with it and grow with it, was enhanced by previous caregiver experiences and an individual's motivation to acquire necessary knowledge, skills, and personal or professional help to do the best they could for the care recipient.…”

“…Caregivers struggled with stress, anxiety, depression, and loneliness (Bulley et al, ; Donnelly, ; Galvin et al, ; Murray et al, ; Sawatzky & Fowler‐Kerry, ). Emotional support was in particularly short supply, as caregivers lost touch with friends and the greater community, and in many instances felt as if they no longer could turn to their sick loved ones (Bulley et al, ; Buschenfeld et al, ; Frankowska & Wiechula, ; Galvin et al, ; Sadala et al, ; Valimaki et al, ; Williams et al, ). During this time, there was grief about the loss of their previous life and guilt over attempts to take care of themselves (Donnelly, ; Galvin et al, ).…”

“…As suffering became a way of life, many caregivers adapted by recognizing and appreciating when life was good (Valimaki et al, ). Positive adaptation strategies included spirituality, self‐reflection, and sometimes religiosity as a means to cope (Brown & Powell‐Cope, ; Donnelly, ; Frankowska & Wiechula, ; Greenwood et al, ; Harrow et al, ; Huang & Peng, ; Liedstrom et al, ; Murray et al, ; Navab et al, ; Valimaki et al, ).…”