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 and one manuscript that is currently under review. 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 and patients with inborn errors of metabolism and mitochondrial disease. 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 395 individuals from 196 families involved in caregiving networks. Of those consented, 328 have completed survey, 314 interview, and 167 provided biological samples (e.g., saliva, blood, and/or heart rate variability). We have published one manuscript from this work that describes parents' situational adjustments to their child's prescribed diet in the context of Proprionic Acidemia, an inherited metabolic condition.
| Ashida, Sato; Marcum, Christopher Steven; Koehly, Laura M (2018) Unmet Expectations in Alzheimer's Family Caregiving: Interactional Characteristics Associated With Perceived Under-Contribution. Gerontologist 58:e46-e55 |
| Marcum, Christopher Steven; Ashida, Sato; Koehly, Laura M (2018) Primary Caregivers in a Network Context. J Gerontol B Psychol Sci Soc Sci : |
| Koehly, Laura M (2017) It's Interpersonal: Family Relationships, Genetic Risk, and Caregiving. Gerontologist 57:32-39 |
| Koehly, Laura M; Ashida, Sato; Schafer, Ellen J et al. (2015) Caregiving networks-using a network approach to identify missed opportunities. J Gerontol B Psychol Sci Soc Sci 70:143-54 |
