"I'd say I have a bit of, you know, that (resilience) in me alright": People with dementia's perceptions of resilience and the factors that support resilience

Background Participation of people with dementia in family and civic life is diminished by cultures of exclusion and stigmatization. Building resilience has been identified as a strategy that may help foster social inclusion... [ view full abstract ]

Background
Participation of people with dementia in family and civic life is diminished by cultures of exclusion and stigmatization. Building resilience has been identified as a strategy that may help foster social inclusion of people with dementia within communities. Windle (2011) defines resilience as ‘the process of effectively negotiating, adapting to, or managing significant sources of stress or trauma. However the extent to which resilience exists or can be cultivated and nurtured in people with dementia is still relatively unknown.

Aim
This study explored persons with dementias perceptions of resilience and the factors that facilitated or hindered their capacity to develop resilience.

Methods
A descriptive qualitative study was conducted based on the work of Thorne (2004). One to one semi structured interviews with a purposive sample of eight (n=8) persons with mild dementia were undertaken. The CORTE interviewing framework (Murphy et al 2014) was used to guide the interview process. This guide consists of four main areas; gaining COnsent, maximizing Responses, Telling the story, and Ending on a high (CORTE guide). This process maximizes the meaningful involvement of persons with dementia, ensuring that their voices are heard and to the fore. In particular the interviews focused on exploring participant’s resilience in living with dementia and the factors that influenced this. 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 identified by Lincoln and Gugba (1985) were used to ensure and maintain rigor.

Findings
The findings indicate that internal and external factors influenced participant’s resilience. These included personal factors, enduring relationships, social support and community engagement. This small study concludes that people with dementia have the capacity to be resilient and building resilience matters.