Style and Substance: Characterizing Dementia Caregiving Styles and Associated Biopsychosocial and Health Services Utilization Outcomes

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ABSTRACT The physical and emotional toll faced by the approximately 15 million Americans serving as family caregivers for persons living with dementia (PWDs) is well-established, and the challenges posed by care provision during COVID-19 related distancing and shelter-in-place orders likely intensify experienced burdens. The NIA-funded parent K01, “Style and Substance: Characterizing Dementia Caregiving Styles and Associate Biopsychosocial and Health Services Utilization Outcomes” (K01AG056557, PI: Amanda Leggett), characterizes distinctions in how various caregiving styles react to internal care challenges (i.e. behavioral and psychological symptoms of dementia, activities of daily living, etc.). This administrative supplement builds off that parent K01 by examining how various defined caregiving styles cope and manage differently in the face of a global pandemic (COVID- 19) and associated shelter-in-place orders. To better understand care styles at higher risk for negative care outcomes and facets of care styles that may be targeted and modified in future caregiving interventions, this supplement aims to 1) Identify the association between external COVID-19 care challenges (pandemic-related stress, social distancing, and shelter-in-place regulations) on caregiver distress and well-being; 2) Characterize how identified cognitive-behavioral care styles uniquely perceive and behaviorally manage care in the face of COVID-19 care challenges; 2a) Explore caregiving styles as a moderator between COVID-19 related external care challenges and outcomes (care-related distress, well-being, informal and formal support seeking, and healthcare utilization), and 3) Delineate caregiver’s perceptions of barriers and facilitators to care during COVID-19 and what services and supports they would have found beneficial to pinpoint targets for social distancing relevant caregiving interventions. To accomplish these aims we will conduct in-depth mixed- methods interviews with 100 primary family caregivers for PWDs (as many as possible from our original sample with refill recruitment to maintain a total sample of 100 participants). All participant contact will be conducted virtually by phone, web-based survey, and videoconferencing methods. This work extends the career development of the PI by expanding the caregiving styles model to incorporate cognitive-behavioral care management across typical care and pandemic care contexts and offering additional training related to a major public health concern which has critical implications for PWDs and their caregivers. Moving forward, insight from this research can inform us on how caregiving styles respond to internal and external stressors allowing for the development of more efficient and effective caregiver-focused interventions tailored to the individual’s caregiving style.