The positive and negative appraisals of caregiving (PANAC) scale: A new measure to examine the caregiving experience in Alzheimer's disease and related dementias

Abstract

Introduction Dementia caregiving is often examined as a monolithic experience describing the challenges caregivers face, exploring one construct at a time, with little research on the positive experiences of caregiving. To address this, we developed the Positive and Negative Appraisals of Caregiving (PANAC) scale. Methods PANAC was validated in 253 patient‐caregiver dyads. Factor analyses revealed a two‐factor solution: Positive Appraisals (PAs) and Negative Appraisals (NAs). Psychometric properties were compared with patient and caregiver characteristics and outcomes, disease stage, and etiology. Results Internal consistency was good with Cronbach's alpha: 0.82 NA and 0.80 PA ( P < 0.001). NA correlated with patient and caregiver characteristics, whereas PA correlated only with caregiver characteristics. The PA/NA ratio could be used to capture change due to an intervention. Discussion The PANAC scale is a useful measure of the overall caregiver experience accounting for negative and positive experiences and may be used to tailor support to individual caregivers.

Comparison of the Caregiving Experience of Grief, Burden, and Quality of Life in Dementia with Lewy Bodies, Alzheimer’s Disease, and Parkinson’s Disease Dementia

“…Care confidence-The respondent's confidence in their ability to provide care to the person living with dementia was measured using 4 investigator-generated questions that have been used in prior studies [9,46] and were adapted from the Dementia Care Confidence scale [47]. The questions were scored on a 4-point Likert Scale of 4 (strongly agree) to 1 (strongly disagree).…”

“…Differences in disease presentation and progression may impact caregivers' subjective experience of burden, grief, depression, and quality of life, or in what factors may alter, exacerbate, or alleviate these experiences. For example, social support may be a protective factor against the deleterious effects associated with caregiving, as having the perception of good social support is related to greater life satisfaction [8,9] and fewer depressive symptoms in caregivers [10].…”

“…Caregiving has been associated with having more depressive symptoms and a poorer self reported quality of life [26], while having the perception of good social support has been shown to be related to greater life satisfaction [8,9] and fewer depressive symptoms in caregivers [10]. A meta-analysis found that caregivers report more depression than non-caregivers [6].…”

“…It should be noted, however, that much of the caregiving literature presents negative aspects of caregiving, without ample discussion of positive appraisals, benefits, and rewards [9]. Caregivers can report feelings of family togetherness, satisfaction with helping, improved relationships, serving as a role model, or an enhanced sense of purpose.…”

“…Caregivers can report feelings of family togetherness, satisfaction with helping, improved relationships, serving as a role model, or an enhanced sense of purpose. These positive appraisals could be captured separately in scales that assess self-efficacy, quality of life, and psychological well-being or could be captured in a global rating scale [9].…”