Inherited Disease, Caregiving, and Social Networks

National Human Genome Research Institute

Investigators

Linked publications, trials & patents

Abstract

In collaboration with Dr. Sato Ashida at the University of Iowa, we completed a pilot study examining caregiving networks of families affected by Alzheimers disease and related dementia (ADRD). The goal was to pilot an assessment tool we developed to uncover the Caregiving Roles and Expectations within informal caregiving Networks (or CaRENet). Index participants were recruited from four dementia care facilities and snowball sampling was used to recruit family members. A total of 72 family caregivers from 30 families answered interview questions regarding their social networks systems, cognitions and emotions about the disease and caregiving, well-being, and socio-demographic characteristics. Additionally, patient information was obtained from 43 formal care providers. From this pilot study, we have shown the value of a multi-informant approach to capture the structure and composition of the caregiving network system that surrounds those affected by ADRD. Further, we have shown that social relationships are both stressors and coping resources which have significant influence on caregiver well-being. During the reporting period, this work has resulted in one publication demonstrating how prior history with ADRD results in variability in caregivers' social support systems. We have expanded our inquiry to consider how such caregiving experiences might differ according to the life stage, disease context, and disease stage faced by each caregiver and care recipient. As such, we are partnering with colleagues who have established patient cohorts in the NIH Clinical Center, including the Undiagnosed Diseases Program, patients with inborn errors of metabolism, mitochondrial disease, and neuro-degenerative diseases. In each, patients require significant caregiving resources related to activities of daily living. Those enrolled in this research complete a survey and interview; primary caregivers who visit the NIH Clinical Center are also asked to provide samples for biomarker assessment. During the current reporting period, we have continued to recruit caregivers and family members for this new research. To that end, we have successfully consented 491 individuals from 241 families involved in caregiving networks. Of those consented, 404 have completed survey, 377 interview, and 185 provided biological samples (e.g., saliva, blood, and/or heart rate variability). We currently have four manuscripts under review; these papers describe the composition and structure of parents' support systems, how social support resources moderate the association between caregiver burden and positive growth through the experience, the impact of relocating to a geographical region with specialist care on caregiver wellbeing, and the unique role that siblings play as caregivers. Currently, two manuscripts arising from this research are undergoing peer review. These papers show 1) how caregiving burden and coping resources are associated with identifying silver linings, or positive aspects of caregiving, assoications modified by caregiving context; and 2) the important role that siblings play in caring for chronically ill children.