Loneliness in Lewy Body Dementia Caregivers: The Interplay of Strain, Depression and Social Support
Jessica Hemm1, Marla Tharp1, Viosa Koliqi1, Sarah Chen1, Evelyn Stevens2, Keith Fargo3, Robin Otto3, Diane Mariani1, Sandhya Seshadri4, Cintra Bentley5, Thomas Manak5, Allegra Miller5, Claire Pensyl5, Margaret Voss5, Bichum Ouyang1, Joshua Chodosh6, Jori Fleisher7
1Rush University Medical Center, 2Parkinson's Foundation, 3Lewy Body Dementia Association, 4University of Rochester, 5PERSEVERE LBD Caregiver Advisory Panel, 6NYU Langone Health, 7Rush University Parkinson's and Movement Disorders Program
Objective:
Examine the prevalence of loneliness among Lewy Body Dementia (LBD) family caregivers and its associations with depression, caregiver strain and social support.
Background:
LBD includes Parkinson’s Dementia and Dementia with Lewy Bodies and is the second-most-common neurodegenerative dementia. In previous studies, 64% of people with Parkinson’s endorsed high levels of loneliness, significantly related to sex, social support and depression prevalence. LBD caregivers have higher rates of depression and caregiver strain when compared to Alzheimer’s caregivers. We hypothesize depression and caregiver strain in LBD caregivers will be associated with subjective loneliness.
Design/Methods:
Baseline data obtained from 382 US-dwelling current and past LBD-family caregivers include: age, sex, race, relationship, LBD-symptom duration, Three-Item Loneliness Scale (range 3-9, where >6 indicates loneliness), the Center for Epidemiologic Studies Depression Scale (CES-DR), self-reported history of depression, and Multidimensional Caregiver Strain Index (MCSI). Among 293 current caregivers, we also measured Multidimensional Scale of Perceived Social Support (MSPSS) total and subdomain scores. We analyzed loneliness scores and associations using non-parametric methods and Spearman correlation coefficient, as appropriate, with alpha error <0.05. Data collection is ongoing.
Results:
Loneliness was present in 43.19% of caregivers, inversely associated with age (Spearman -0.17, p=0.001) and significantly associated with female sex (p=0.03). Positive associations were found among self-reported depression (p<0.0001), CES-DR total score (Spearman 0.62, p<0.0001), and caregiver strain (Spearman 0.59, p<0.0001). Among 293 active caregivers, loneliness was inversely correlated with total perceived social support (Spearman -0.50, p<0.0001) and all subdomains, including support from: significant other (-0.42, <0.0001), family (-0.40, <0.0001), and friends (-0.47, <0.0001). No associations were found among race, relationship, or LBD-symptom duration.
Conclusions:
Loneliness is common among LBD-family caregivers, and associated with caregiver strain and depression, with younger, female caregivers and those with less social support at highest risk. Thus LBD-caregiver interventions prioritizing social support and connection may benefit caregiver and LBD outcomes.
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