Resistiveness to care during assistance with activities of daily living in non-institutionalized persons with dementia: associations with informal caregivers’ stress and well-being

Abstract

Objectives Behavior problems that co-occur during assistance with Activities of Daily Living (Resistiveness to Care; RTC) are considered challenging, but are mostly studied in institutions with implications for patients and formal caregivers. RTC is related to, but independent from agitation, and detection of RTC may be left out of common assessments of persons with dementia in studies of informal caregiving (e.g. global assessments of dementia behavioral symptoms, standard assessments of ADL function). This study examines how RTC (frequency and caregivers’ stress appraisals of RTC) are related to caregivers’ well-being. Method 234 caregivers of people with dementia reported care receivers’ ADL impairment (eating, bathing, dressing), RTC frequency (of eating, bathing dressing), and their stress appraisals of these behaviors (RTC appraisals). Caregivers also self-reported their role overload, role captivity, and depressive symptoms. Hierarchical linear regression models included independent variables (demographics, ADL impairment, RTC frequency, RTC appraisals) with three separate dependent variables (overload, captivity, depressive symptoms). Results Two-thirds of informal caregivers reported RTC. Care recipients’ ADL impairment was associated with caregiver outcomes, but only before RTC was entered into the models. RTC frequency significantly predicted caregivers’ overload, captivity, and depression. RTC appraisals predicted overload and captivity. Conclusion RTC is common in persons with dementia residing at home, and RTC has more negative association with informal caregivers’ well-being than assistance with ADL. Adding RTC frequency and appraisal items to standard ADL measures may better estimate caregiver needs and risk, and identify modifiable environmental features by assessing behavioral symptoms in context.

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La influencia del apoyo social en cuidadores de personas con deterioro cognitivo o demencia.

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