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 73 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. This work has resulted in one publication and two manuscripts that are 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 Disease Program and patients with inborn errors of metabolism and mitochondrial disease. In each, patients require significant caregiving resources related to activities of daily living. During the current reporting period, we have amended the caregiving protocol to include these new cohorts and established the research infrastructure for recruitment, survey, and assessment of study participants. Recruitment for this new research will begin in the fall, 2015.
| 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 |
