The Transition to Caregiving

Abstract

Although there is an extensive literature on dementia caregiving, research on family members' adjustment to the onset of dementia and on the early stage of caregiving is limited. This article describes a phenomenological study based on twenty semi-structured interviews with spouses and adult daughters of someone with early/mild dementia or mild cognitive impairment (MCI). Participants were asked to describe the earliest changes in the parent or spouse and the changes to their everyday lives and in their relationships brought by cognitive impairment. These family members reported taking on many new responsibilities in a highly interactive caregiving process consisting primarily of decision-making and supervision. Many participants reported experiencing frustration, resentment, grief, and relational deprivation, along with increased protectiveness and tenderness towards the person with dementia. Most of the participants were ambivalent about seeking or accepting help from others and seemed to want to maintain the status quo as long as possible. Social workers meeting with families in the context of disclosure of a dementia diagnosis or the early adjustment period may help by identifying their losses, normalizing negative feelings, and helping families envision ways they could use outside help.

Managing life-altering situations: A qualitative longitudinal study of the experiences of people with memory disorders and their family caregivers

“…In these respects, our results support previous indications that managing identity and sense of self is a significant coping task for the PMD [4,11,15,21] and that adaptation to new roles and responsibilities of caregiving poses challenges for family caregivers (FCs) [5,8,10,12,41] . The processes of adjusting to altering self and adopting the role of caregiver were intertwined as interpersonal processes comprising a continuum of adjustment and distress.…”

“…Diagnosis is a turning point that creates significant psychosocial coping demands for the whole family [4][5][6][7] . Previous research shows how memory disorders change family roles and dynamics [5,[8][9][10] . Interestingly, people with early-onset memory disorders and their families face slightly different challenges from those who are older at the time of onset [11][12][13][14] .…”

“…Previous studies concerning the subjective experiences of PMDs focus on their challenges, coping strategies [15][16][17][18] , the diagnosis' impact on their selfhood and identity [11,[19][20][21] , subjective reality [22,23] and dignity [24,25] . Issues relevant to family members' experiences that have been studied include changes in relations as well as caregivers' challenges, well-being, burden and coping mechanisms [8,[26][27][28][29] . Intrapersonal processes are usually of interest, and investigators highlight a need to understand the interpersonal and dyadic processes involved in giving and receiving care [30,31] .…”

Caregiving for people with dementia in a rural context in South Africa

“…22 Women seemed to be more prone to relational deprivation, which is a restriction in one's social life and feelings of social isolation. 3,23 It has been noted that women tend to use more emotion-focused coping strategies whilst men utilise more problem-focused methods. A combination of mixed coping methods yielded more efficacious results.…”

Mild Cognitive Impairment and Caregiver Burden: A Critical Review and Research Agenda

“…This is surprising given that the assessment of objective burden is of utmost importance to the family caregiver, who often must take on new responsibilities in order to help the individual with MCI continue to function as long as possible. 13 These responsibilities include housework, driving, financial management, supervision of daily activities, assistance in decision-making, and provision of psychological support, 8,34 as well as some nursing tasks, such as administration of medications. 17 However, only Garand and her colleagues 16,17 assessed objective and subjective burden of care separately, showing that, similar to the area of AD, 35 both aspects of burden are differentially associated with outcome variables, and that subjective burden (meaning the perceptions of the caregivers regarding their role) was more clearly associated with outcome variables such as depression and marital satisfaction.…”