Searching for life within an empty shell : understanding the factors that enhance resilience amongst dementia caregivers

Abstract

Caring for a person with dementia has shown to be an exceptionally challenging and daunting task. Caregivers were often overwhelmed by the sudden role reversal and burdened by their caregiving responsibilities, which placed them in a state of emotional turmoil. Yet, despite facing significant adversity, some caregivers reported positive gains as they were able to forge meaning out of their caregiving journey. Such differing outcomes could be explained by the presence of caregiver resilience. This study explores the meaning of resilience from the perspective of the family caregivers and identifies the attributes that constitute caregiving resilience in the Singapore context.Focus group discussions were conducted with a total of 24 family caregivers, aged 45 to 72, to discuss their caregiving difficulties and experiences. Framework analysis with deductive and inductive methods was utilised to analyse eight transcripts.All six themes—flexibility, positive thinking, self-efficacy, resourcefulness, social support, spirituality—from the original resilience framework were supported. In addition, two new emergent themes have been identified, which include family solidarity and quality of caregiving relationship. The findings point to the importance of understanding both individual personal strengths of caregivers and characteristics of the family unit in the construct of resilience.