Characterizing dementia caregiver style in managing care challenges: Cognitive and behavioral components

Abstract

Background

Caring for a person living with dementia can take a physical and emotional toll, but understudied is the process by which family caregivers actually provide care. Caregiver management styles may vary and affect care decision-making, experiences, receptivity to and participation in interventions, and outcomes for the caregiver and person living with dementia.

Methods

Participants included 100 primary family caregivers for persons with dementia who were on average 64 years old and had been providing care for 55 months, 74% women, and 18% nonwhite. Participants were interviewed in Michigan and Ohio regarding their cognitive and behavioral management of a recent care challenge and values guiding their decision-making. The rigorous and accelerated data reduction technique was used to analyze qualitative data leading to the identification of caregiving styles. Styles were compared across sample characteristics using chi-square and ANOVA tests.

Findings

Five distinct styles emerged: “Externalizers” (superficial understanding, self-focused, and frequent expressions of anger or frustration), “Individualists” (provide care by going alone, emotionally removed, and lack management strategies), “Learners” (recognize need to change their approach but are stuck and emotionally turbulent), “Nurturers” (positive affect and empathy toward care and reflect natural mastery), and “Adapters” (arsenal of acquired management strategies and adapt to challenges). Style groups differed significantly in terms of age and use of formal care supports.

Discussion

We identified five distinct styles by which caregivers addressed care challenges using a robust qualitative methodology. Styles may be important to identify in order to better tailor interventions to needs and abilities.