Family Involvement and Symptom Burden in Nursing Home Residents with Cognitive Impairment

Abstract

Research suggests that family involvement improves the quality of life of nursing home residents. Using baseline data from an on-going multisite clinical trial (UPLIFT-AD), we examined the association between family involvement and staff-reported accounts of resident symptom burden. Symptom burden was measured as a composite of frequency and intensity of symptoms, using items from the End-of-Life Dementia (EOLD) scale. Higher scores indicate greater burden. Family involvement was measured by the family-reported average weekly in-person visit frequency over the past month (range 0-7 days). Data on 198 residents were collected, 61.9% of whom were in Indiana, with the remainder (38.1%) in Maryland. Of the 198 residents, 60.3% were female. The Brief Interview for Mental Status score, which indicates cognitive impairment level, was 6.5 (SD=3.9). Most family members were an adult child (58.7%), 7.9% were spouses, and 38.8% were “other.” On average, spouses visited 5 days a week, children 2 days a week, and other family members 1.5 days a week. In 53.5% of cases, the reporting staff member knew the resident for >1 year. Linear regression analysis was used to examine the associations between the frequency of in-person family visits and EOLD scores while adjusting for resident demographics, mental status, family relationship to the resident, and facility location. Visit frequency was associated with higher EOLD scores (B=0.18, p=.037). Findings suggest family involvement may sensitize nursing home staff to the presence of a resident’s burdensome symptoms, which may become more discernible to families with increased involvement.