Family quality of life in dementia and caregiver burden are associated with different caregiver personal characteristics

Abstract

AbstractBackgroundMost care for persons with dementia takes place in the context of family. Dementia is associated with diminished quality of life for both affected persons and their caregivers, as well as increased burden. There is a growing consensus in dementia care that service‐delivery models for persons with dementia need to be family‐centered, but few studies have explored the concept of “family quality of life” (FQOL) in dementia. As part of a planned coaching intervention to reduce burden in caregivers of people with behavioral and psychiatric symptoms of dementia (BPSD) associated with care resistance, we collected baseline data on factors that might influence burden, FQOL, and response to the intervention.MethodThe 42‐item Family Quality of Life in Dementia (FQOL‐D) questionnaire, Connor‐Davidson Resilience scale (CD‐RISC), Pearlin Mastery scale, and neuroticism items from Eysenck Personality Inventory(EPI) were collected from 26 family caregivers of people with AD who endorsed BPSD with care resistant behaviors. The Spearman correlation between caregiver personality traits and FQOL‐D was calculated. In addition, relationships between caregiver burden, measured with the Zarit Burden Interview (ZBI), and caregivers' personality characteristics were ascertained.ResultOf the 26 enrolled caregivers, 14 (53.85) were female, their mean age was 64.5 years and 24 (92%) were college‐educated. Their care recipients were 61% female, 77% white, mean age of 76 years, and college‐educated (88%). Mean scores were CDRISC 76.03 (+/‐12.05), EPI 6.30 (+/‐1.95), Pearlin 20.23 (+/‐3.26) and FQOL 173.80 (+/‐24.92). There were moderate correlations between FQOL and CDRISC (r=0.5). Secondary analysis showed moderate correlations between ZBI and Pearlin (r=–0.42) and EPI (r=0.48). All reported associations are P<.05ConclusionA relationship between Family Quality of Life and caregiver personal characteristics was identified. Higher baseline FQOL‐D was associated with greater self‐reported resilience. Similarly, higher mastery scores were associated with lower burden on the ZBI. Higher caregiver neuroticism was associated with higher reported burden. No relationships between mastery or neuroticism and FQOL‐D were established in this small sample. We identified that the positive construct of FQOL‐D may be associated with different caregiver characteristics than the negative emotional valance attributed to burden.