Family caregiver strain and resident distress in the dementia population of nursing home facilities

Abstract

End-of-life care in the U.S. is increasingly provided in nursing homes (NHs), and over half of all NH residents have some degree of cognitive impairment. Given the prevalence of this cognitive decline, there is a surprising gap in research related to the management of distress in this patient population and their family caregivers. Symptoms of distress vary based on multiple factors (e.g., pain, cognitive status, type of caregiver) and can be masked in the cognitively impaired due to communication difficulties. The purpose of this study was to examine whether resident and family caregiver distress and strain are different among three NH resident groups based on diagnoses: (a) Alzheimer’s, (b) other dementia disorders, and (c) non-cognitive diagnoses. This exploratory study was a secondary analysis of data collected from a longitudinal study examining end-of-life care in NHs. The sample was comprised of 1,282 pairs of NH residents and their family caregivers from two Midwestern states. Caregiver and resident distress and strain were measured with the Caregiver Strain Index and the Family Memorial Symptom Assessment Scale Global Index, respectively. ANOVA procedures were used to test for differences among the groups, and follow-up tests were conducted using Duncan/Dunnett’s T3 tests. Findings indicated significant decreases in distress (F(2,1267) = 34.16, p<.001) and strain (F(2,1267) = 10.08, p<.001) among cognitively-impaired residents from those who were cognitively intact. No significant differences were found in caregiver distress or strain based on the cognitive status of their loved one. It is uncertain whether the reported differences are attributable to communication difficulties of the cognitively-impaired residents or whether they are experiencing less distress and strain. Research in other geographic locations using larger samples are needed to provide further insight.