"…you need to be really mentally strong to cope":Carers' of people with dementias perceptions of resilience and the factors that support resilience

Background Approximately 26,104 people with dementia are living in the community in Ireland being cared for by family and friends. Carers report a lack of support, information and skills. Many therefore experience high carer... [ view full abstract ]

Background
Approximately 26,104 people with dementia are living in the community in Ireland being cared for by family and friends. Carers report a lack of support, information and skills. Many therefore experience high carer burden, are at risk of mental and physical illness, and become socially isolated. These problems can result in being placed in residential care prematurely which has significant economic and health costs. However little is known about carers perceptions of resilience and the factors that strengthen their resilience.
Aim:
This study explores carers perceptions of resilience and the factors that facilitated or hindered their resilience when caring for people with dementia.

Methods
A descriptive qualitative study was conducted based on the work of Thorne (2004). Semi structured interviews with a purposive sample of twenty eight (n=28) persons with mild dementia were undertaken. In particular the interviews focused on careers resilience in caring for persons with dementia, how their capacity for resilience could be enhanced to assist and support them to continue caring for the person with dementia in their own home for as long as possible. All interviews were tape recorded and transcribed verbatim. Transcripts were analyzed for themes using the constant comparative technique and Windle (2012) resilience framework was used to guide the analysis. The criteria idenetified by Lincoln and Gugba (1985) were used to ensure and maintain rigor.

Findings
Findings indicate that internal and external factors influenced participant’s resilience. These included self esteem, coping style, knowledge of dementia, supports and engagement in pleasant activities, maintaining social networks, connection to, and learning from, other carers, humour and time for self. This study concludes that resilience is important to the sustainability of caring for people with dementia and resilience can be strengthened providing appropriate supports are in place.