Social Connectedness and Communication in Parents with Huntington''s Disease and their Offspring: Associations with Psychological and Disease Progression

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PROJECT SUMMARY Extensive research has established clear, strong associations between human social relationships and health and illness. A lack of social connection, including isolation, loneliness, and conflict, is related to the onset and progression of cardiovascular disease, some forms of cancer, diabetes, and obesity among other acute and chronic health conditions. Neurodegenerative diseases have been relatively overlooked in this research despite having adverse effects on patients’ functioning that may disrupt a range of social relationships. Huntington’s disease (HD) is an exemplar neurodegenerative disease that it is a fully penetrant, autosomal dominant condition characterized by progressive cognitive, behavioral, emotional, and motor impairments that have the potential to negatively affect family functioning and community engagement. HD is likely to place a particular burden on the parent-child relationship given that the disease is most often diagnosed in middle adulthood, a period that includes the primary years for child rearing and parenting, and offspring of parents with HD have a 50% risk of inheriting the disease themselves. As children watch their parents’ disease progress, they observe their own potential future and may be tasked with significant caretaking demands. Notably, qualitative research highlights significant impairments to social relationships experienced by both HD parents and their offspring within and outside of the family. In response to PAR-21-145, the proposed study will address the gap in empirical research by documenting levels of the structure, function and quality of social connectedness in HD families and examine potential mechanistic targets for behavioral intervention. Our preliminary data emphasize the negative impact of HD on social connectedness, including the quality of communication, of parents with HD and their offspring. Further, our previous research and preliminary data suggest two potential mechanisms linking social relationships and psychological and physical health outcomes for parents with HD and their offspring: executive function (EF; e.g., working memory) and emotion regulation (ER) in response to stress (e.g., cognitive reappraisal, problem solving). We will examine the associations between social connectedness and quality of life and impairment in cognitive and emotional function in a sample of 200 patients with HD and their adolescent and young adult offspring (n = 200). A sample of parents without neurodegenerative disease (n = 200) and their adolescent and young adult offspring (n = 200) will serve as a comparison sample.