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: Resistiveness to care (RTC) refers to behavior problems that co-occur during assistance with activities of daily living (ADL). RTC are considered challenging, but are mostly studied in institutions with implications for patients and formal caregivers. RTC is associated with agitation, but agitation is considered a separate construct. 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) is 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 caregivers' needs and risk, and identify modifiable environmental features by assessing behavioral symptoms in context.

Keywords:

• psychological and behavioral symptoms
• psychological and social aspects
• challenging behavior
• stress/burden
• functional status
• caregiving
• dementia

Acknowledgement

We would like to acknowledge Rick Greene for his contributions to this study.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This research was funded in part by a grant from the National Institute of Mental Health [RO1 MH59027]; by a grant from the National Institute of Mental Health, Interdisciplinary Training in Gerontology [5 T32 MH18904-17]; and a grant from the National Institute on Aging, Interdisciplinary Training in Gerontology [5 T32 AG00048-27].