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Dissertation/Thesis Abstract

Personalizing Care for the Caregivers: An Exploration of Factors Contributing to the Experiences and Outcomes of Family Caregivers of Persons with Dementia
by Binford, Sasha Sage, Ph.D., University of California, San Francisco, 2019, 148; 22616713
Abstract (Summary)

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 meta-analyses of these data from the systematic review revealed statistically significant associations between Neuroticism and burden (pooled-r = .304), Neuroticism and depression (pooled-r = .593), and Extraversion and burden (pooled-r = −.233).

The quantitative study revealed a statistically significant difference between class membership and life satisfaction. Two classes (i.e., profiles) were identified through methods of latent class analysis that best fit the data. Membership in the “Higher Resilience” (HR) class was associated with higher self-reported measures of “global cognitive judgement” of personal satisfaction with life than membership in the “Lower Resilience” (LR) class. Membership in the HR class was also associated with higher self-reported measures of bodily pain and role limitation due to emotional problems as assessed by the SF-36 health-related quality of life (HRQoL) instrument. No significant differences between the HR and LR classes were identified in participant or patient characteristics or in the FCG outcomes of perceived burden, distress, depression, anxiety level, or the HRQoL subscales of physical role limitations.

The qualitative data revealed an underlying psychosocial process of a step-wise progression in role identity in spouses of persons with an EOD syndrome. A shift was described in how the well-spouse self-identified in the situation from that of “spouse” to that of “caregiver”. These “step-downs” in the transition were interpreted as representing “moments of significance” in the PWEOD’s continuous decline that held special meaning to the respective well-spouse and challenged them to take action in order to resolve resulting incongruencies to what it meant to them to be a spouse. The conditions of the situation (i.e., changes in the marital partnership and the interpersonal relationship between the dyads) carried unique aspects for this sub-group of FCG primarily due to the relatively young life stage at which this has occurred and the repercussions on their family and social life as well as financially.

Inter-individual factors (i.e., personality traits) as well as understandings of the unique situations of sub-groups of caregivers (i.e., spouses of PWEOD) are factors which contribute significantly to the experiences as well as to health outcomes of FCG of PWD. They are critical factors to consider in the development of tailored interventions aimed at improving the health outcomes of this population of FCG.

Indexing (document details)
Advisor: Leutwyler, Heather
Commitee: Wallhagen, Margaret I., Flowers, Elena, Levenson, Bob, Merrilees, Jennifer
School: University of California, San Francisco
Department: Nursing
School Location: United States -- California
Source: DAI-B 81/4(E), Dissertation Abstracts International
Subjects: Nursing, Neurosciences, Health care management
Keywords: Alzheimer's disease, Dementia, Early-age onset, Family caregivers, Latent profile analysis, Personality traits
Publication Number: 22616713
ISBN: 9781088393437
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