Personalizing Care for the Caregivers: An Exploration of Factors Contributing to the Experiences and Outcomes of Family Caregivers of Persons with Dementia

Family caregivers of persons with dementia are at increased risk for adverse health outcomes than their peers not in a caregiving role. Persistent heterogeneity in the literature focused on outcomes in this population complicates efforts at identifying who is at greatest risk and for what outcomes as well as avenues for personalizing their care. The purpose of this dissertation was to explore factors contributing to the experiences and health outcomes of family caregivers (FCG) of persons with dementia (PWD). The overarching goal of this dissertation was to move the science as well as clinical practice forward in providing individualized care to our family caregivers of persons with dementia. This dissertation sought to achieve this goal through triangulating data from both quantitative and qualitative sources. A systematic review of the literature was conducted with a meta-analysis of the included studies’ findings related to assessing personality traits (PT) as predictors of outcomes in the FCG of PWD. A quantitative secondary analysis was then conducted based on a self-report measure of PT in a sample of FCG of PWD. A novel approach using latent profile analysis was employed in this study for purposes of exploring how group membership into classes of PT profiles was associated with health outcomes in this population of FCG. The qualitative aspect explored theory development around a sub-group of FCG using a grounded theory approach to guide interviews and participant observations with 15 spouses of persons with an early-age of onset dementia (EOD) syndrome. The systematic review with meta-analysis evaluated the strength of the current evidence supporting the assessment of PT (as defined by the Five Factor Model of Personality) of the FCG of PWD as significant predictors of these caregivers’ health outcomes, explaining some of the persistent heterogeneity observed. Only the dimensions of Neuroticism and Extraversion showed the greatest utility as reliable predictors through this review process, however. The ...