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

Abstract: The physical and emotional toll faced by the approximately 15 million Americans serving as family caregiversfor persons living with dementia (PWDs) is well-established, and the challenges posed by care provision duringCOVID-19 related distancing and shelter-in-place orders likely intensify experienced burdens. The NIA-fundedparent K01, "Style and Substance: Characterizing Dementia Caregiving Styles and Associate Biopsychosocialand Health Services Utilization Outcomes" (K01AG056557, PI: Amanda Leggett), characterizes distinctions inhow various caregiving styles react to internal care challenges (i.e. behavioral and psychological symptoms ofdementia, activities of daily living, etc.). This administrative supplement builds off that parent K01 by examininghow 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 careoutcomes and facets of care styles that may be targeted and modified in future caregiving interventions, thissupplement aims to 1) Identify the association between external COVID-19 care challenges (pandemic-relatedstress, social distancing, and shelter-in-place regulations) on caregiver distress and well-being; 2) Characterizehow identified cognitive-behavioral care styles uniquely perceive and behaviorally manage care in the face ofCOVID-19 care challenges; 2a) Explore caregiving styles as a moderator between COVID-19 related externalcare challenges and outcomes (care-related distress, well-being, informal and formal support seeking, andhealthcare utilization), and 3) Delineate caregiver's perceptions of barriers and facilitators to care duringCOVID-19 and what services and supports they would have found beneficial to pinpoint targets for socialdistancing 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 originalsample with refill recruitment to maintain a total sample of 100 participants). All participant contact will beconducted virtually by phone, web-based survey, and videoconferencing methods. This work extends thecareer development of the PI by expanding the caregiving styles model to incorporate cognitive-behavioralcare management across typical care and pandemic care contexts and offering additional training related to amajor 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 stressorsallowing for the development of more efficient and effective caregiver-focused interventions tailored to theindividual's caregiving style.