Motivations for being informal carers of people living with dementia: a systematic review of qualitative literature

Abstract

Background Informal, often family carers play a vital role in supporting people living with dementia in the community. With ageing populations, the part played by these carers is increasing making it important that we understand what motivates them to take on the role. This systematic review aimed to identify and synthesise qualitative literature describing what motivates people to care for someone with dementia. Methods The review followed the Centre for Reviews and Dissemination (CRD) guidelines. Six electronic databases were searched from their first records until August 2018. Synthesis was narrative. Results Twenty-six studies fitting the inclusion criteria were identified. Carers described multiple, inter-related motives for caring for someone with dementia. Caring was generally described as a reflection of long-standing family relationships between carers and the care recipients, whether by blood or marriage. Commonly offered motivations included love, reciprocity, filial piety, duty and obligation. Conclusions Perhaps the most striking finding was the similarity in these motivations irrespective of gender or relationship with the care recipient. Family relationship and shared history underlay most motivations. Future research should include more longitudinal studies incorporating within study comparisons between different demographic groups to give greater confidence in identifying similarities and differences between demographic groups.

2020 Alzheimer's disease facts and figures

“…Three of the main reasons caregivers provide care and assistance to a person with Alzheimer's or another dementia are (1) the desire to keep a family member or friend at home (65%), (2) proximity to the person with dementia (48%) and (3) the caregiver's perceived obligation to the person with dementia (38%) A13 . Caregivers often indicate love and a sense of duty and obligation when describing what motivates them to assume care responsibilities for a relative or friend living with dementia 315 . Individuals with dementia living in the community are more likely than older adults without dementia to rely on multiple unpaid caregivers (often family members); 30% of older adults with dementia rely on three or more unpaid caregivers, whereas 23% of older adults without dementia rely on three or more unpaid caregivers 316 .…”

“…A13 Caregivers often indicate love and a sense of duty and obligation when describing what motivates them to assume care responsibilities for a relative or friend living with dementia. 315 Individuals with dementia living in the community are more likely than older adults without dementia to rely on multiple unpaid caregivers (often family members); 30% of older adults with dementia rely on three or more unpaid caregivers, whereas 23% of older adults without dementia rely on three or more unpaid caregivers. 316 Only a small percentage of older adults with dementia do not receive help from family members or other informal care providers (8%).…”

Caring for home‐dwelling parents with dementia: A qualitative study of adult‐child caregivers' motivation

“…Relatedness to the person with dementia is a well‐known factor for how caregivers experience their role (Bjørge et al., 2017; Bjørge, Sæteren, & Ulstein, 2019; Quinn et al., 2015). Relationship quality is directly linked to motivations for providing care and associated with the meaning of caregiving (Greenwood & Smith, 2019; Quinn et al., 2015). Essential in our study was the fact that adult children with two living parents were motivationally driven by the relationship with the healthy parent defining their role as supporting the primary caregiver.…”

“…Motivational support increases caregivers' sense of well‐being, psychological growth and resilience (Weinstein & DeHaan, 2014). In a review article, Greenwood and Smith (2019) found the motives of family caregivers to persons with dementia, for example reciprocity, commitment, love, duty, loyalty, obligations and responsibility, to be identical with their reasons to sustain as caregivers. Still, the motivations for taking on and staying in the caregiver role remain an area not fully understood (Greenwood & Smith, 2019; Quinn, Clare, & Woods, 2010).…”

“…In a review article, Greenwood and Smith (2019) found the motives of family caregivers to persons with dementia, for example reciprocity, commitment, love, duty, loyalty, obligations and responsibility, to be identical with their reasons to sustain as caregivers. Still, the motivations for taking on and staying in the caregiver role remain an area not fully understood (Greenwood & Smith, 2019; Quinn, Clare, & Woods, 2010). Thus, studying caregiving using a theoretical motivation framework is recommended as it can further help identify and categorize motivational aspects (Quinn et al., 2010).…”