Meaning in family caregiving for people with dementia: a narrative study about relationships, values, and motivation, and how day care influences these factors

Abstract

BackgroundIn addition to care-related burdens, most caregivers of a person with dementia perceive a variety of positive and satisfying experiences, such as feeling needed and useful in their family caregiving role. “Meaning-focused coping” describes both positive and negative emotions in periods with high levels of stress. Day care service may have the potential to increase caregivers’ positive experiences and meaning-focused coping, and positively influence interpersonal relationships between those giving care and those receiving care. The aim of this study was to gain knowledge about family caregivers’ experiences of meaning in their caring role. Additionally, the influence of day care services on caregivers’ experiences and motivation in their caregiving role is explored.MethodsA qualitative design based on individual interviews was used. The interviews were analyzed using a narrative method and a case study approach.FindingsFamily caregivers’ roles and coping strategies were related to their relational ties. Caregivers had to make decisions about whether to enhance, maintain, or let go of emotional ties to find a good balance between meeting their own needs and the needs of the person with dementia. Family caregivers reported that day care positively influenced their “relationship-oriented coping” and experience of meaning.ConclusionFinding meaning in the role of a family caregiver for persons with dementia is closely connected to the caregivers’ own values and goals. Finding a balance between attending to their own needs and the needs of the person with dementia is crucial. Day care has the potential to increase family caregivers’ motivation to care by supporting their capacity to meet their own needs, cooperate and communicate with the person with dementia, and make competent and autonomous choices, thus increasing their feeling of mastery.

I becomes we, but where is me? The unity–division paradox when caring for a relative with dementia: A qualitative study

“…Loss of personhood can transpire when someone's identity as a carer comes to dominate, yet positive aspects of caring are possible, such as being satisfied they have provided safety and comfort, experiencing moments of fun and affection, and feeling personal accomplishment and growth (Lloyd et al, ; Yu et al, ). Appreciating such positive aspects can entail reappraising one's relationship with the person with dementia and accepting change; this may include embracing outside support and even a degree of physical separation if someone moves into residential care (Tretteteig et al, ). As noted by Lloyd et al (), positive aspects of caring do not just appear; they are developed through strategies and choices made by a carer.…”

“…The unity–division paradox may extend to other caring experiences but seems particularly relevant to dementia given the vulnerability of those with this condition, which means the carer–person with dementia dyad becomes asymmetric (Tretteteig et al, ). Further research could explore how it relates to other situations (e.g.…”

“…Positive aspects of caring for a person with dementia have been reported, which include feeling appreciated, developing patience, self‐awareness and learning new skills (Lloyd, Patterson, & Muers, ; Tretteteig, Vatne, & Rokstad, ; Yu, Cheng, & Wang, ). Experiencing these positive aspects is associated with lower levels of depression and anxiety, and feeling less adversely affected by the condition (Mausbach et al, ; Pinquart & Sorensen, ).…”

“We Really Help, Taking Care of Each Other”: Older Homeless Adults as Caregivers

“…And I’m sick of it, I’m really gettin’ tired.” He resented always needing to look after her: “At night I be sleepin’ and she wakin’ me up, callin’, come help me, I’m sick of this.” Some participants expressed resentment and frustration when describing their current or previous roles as caregivers for their family members. Caregiving takes a physical and emotional toll: Many caregivers experience a sense of grief when becoming caregivers, as well as a lack of social support, a loss of privacy, or resentment (Lopez Hartmann et al, 2016; Pope et al, 2012; Tretteteig et al, 2017).…”

The impact of attending day care designed for home-dwelling people with dementia on nursing home admission: a 24-month controlled study

“…The family caregivers experience respite and reassurance from the service [ 46 , 47 ]. Additionally, the potential for day care to increase family caregivers’ motivation to care and increase their feeling of mastery has been demonstrated [ 48 ]. Based on these positive experiences of day care, the potential for the services to postpone the need for NH admission could be presumed.…”