The experiences of grandchildren who provide care for a grandparent with dementia: A systematic review

Abstract

Much of the research exploring the experiences of family caregivers of people with dementia has focussed on spouses and adult children. It is hypothesised that other family members at different life stages and with different family roles may experience and perceive the caregiving role differently. The objective of the current review was to explore the experiences of grandchildren who provide care to a grandparent with dementia. A systematic search of four databases identified 12 studies which met the inclusion criteria. An assessment of quality was completed for each of the included studies. Grandchildren described dementia-related changes, changes to their role and relationship with their grandparent, multiple impacts of caregiving, influences of other family relationships on caregiving and positive aspects of caregiving. Many of the included studies met most of the quality criteria for the respective methodological design; however, there was some variation in quality and sample across included studies. The review indicates that assessments and interventions to incorporate grandchildren and the wider family system may help to support family carers to continue to provide care for grandparents with dementia. The research and clinical implications and limitations of the review are also considered.

The mental and physical health of young carers: a systematic review

“…If young carers are providing care to an older person (eg, a grandparent) with dementia, the role is likely to be as an auxiliary caregiver with less intense responsibilities. 35 Young carers (when they are primary caregivers) are most likely to be providing care for a parent and most often for a parent with mental health conditions. 36 Therefore, research into whether the health effects of being a young carer differ by the type of relationship between the caregiver and the care recipient is needed.…”

Extended Family Caregivers for Persons Living With Dementia

“…For example, adult grandchildren who typically provided periodic assistance to their grandparents to support their parents as primary caregivers (Hamill, 2012) only assumed the role of full-time caregiver if their parents were not able to maintain their caregiver role (Fruhauf et al, 2006; Piercy & Chapman, 2004). Whether serving in a primary or auxiliary caregiver role, grandchildren caregivers are a heterogeneous group with different priorities, demands, and roles (Venters & Jones, 2021) than family caregivers at other life stages. They experience unique caregiving-related strains, for example, limited career/family aspirations and decreased dating/social life (Dellmann-Jenkins et al, 2000; Fruhauf & Orel, 2008).…”

Grandchildren of grandparents with Alzheimer’s disease: Exploratory study of the impact of the disease on their relationships

“…For example, a recent review only found 12 papers that studied grandparent-grandchildren relationships when a grandparent had dementia (Venters & Jones, 2021). Those papers mainly described a negative impact that dementia had on several dimensions of the relationship, such as a decrease of emotional closeness (Creasey et al, 1989; Hamill, 2012), less frequency of shared activities (Celdrán et al, 2011) or less satisfaction with the relationship (Creasey & Jarvis, 1989; Werner & Lowenstein, 2001), among others.…”

“…It also influences the extent to which the grandchild understands the disease and their involvement in the grandparent’s everyday care. This developmental psychology’s perspective of how a grandchild confronts a disease like Alzheimer’s disease has not been examined in some of the previous studies that include samples with a wide of grandchildren’s age (Venters & Jones, 2021). In this respect, there are some previous studies that refer specifically to adolescents (Celdrán et al, 2011) or young adults (Howard & Singleton, 2001; Miron et al, 2018) but few studies have focused only on the youngest children.…”