Towards Resilience in Family Caregiving for People with Dementia (EnCaRe)

Project duration: Nov-15 to Nov-18

The project is funded by the Health Research Board.

Project Description:

The Irish National Dementia Strategy (2014) recognises that dementia can adversely affect carers’ health, social and economic circumstances and relationships, and stresses the importance of ‘a whole community approach’ in which social connectedness and social environments are the means of ensuring that remaining at home with dementia is a feasible option. These outcomes can be achieved if the carer is more resilient, that is, has the resources to counterbalance the negative effects of adversity and make positive adaptation to the demands of caregiving. Resilience is a function of the individual’s internal resources, such as self-efficacy, and the ability to use external resources, such as services and family and other social support systems as a way of coping with stressors of caregiving.

The aim of the study is to develop and promote resilience in family carers of people with dementia. The study will be conducted within a participatory action research framework and will be developed in three stages. Stage 1 will involve a systematic review of the literature on resilience and resilience-enhancing interventions and initiatives in family caregiving. It will also involve a national survey of family carers aimed at measuring resilience and related psychosocial factors and data-mining of an existing dataset of family carers to measure key variables associated with psychosocial effects of caregiving in dementia. Stage 2 involves the development of an Enhancing Carers’ Resilience (EnCaRe) programme for family caregivers. The programme will be co-created by a network group comprising family carers of people with dementia and the members of the research team. Stage 3 will involve the conduct of a study to determine the feasibility of the programme, including its acceptability among family carers. The findings of the study will provide important new evidence on carer resilience and will inform policy, carer supports and interventions.

The project is being conducted in partnership with St Vincent's University Hospital Group and Care Alliance Ireland, under the auspices of the National Centre for the Protection of Older People (NCPOP) at UCD, an academic centre established with grant funding from the Health Service Executive in 2008.