UCSF

Background

Neurodegenerative diseases (NDDs) are increasingly prevalent and radically alter the lives of individuals and their informal care partners (together called a dyad). As symptoms progress, dyads are at risk for elevated emotional distress and declines in relationship functioning and quality of life. Psychosocial interventions delivered to dyads early after diagnosis have successfully prevented chronic emotional distress across several chronic illnesses including cancer and acute brain injury. Dyads with NDD could benefit from such interventions, however, they are limited. Because NDDs have symptom profiles that are distinct from other chronic illnesses, they require a unique framework and interventions. Given the limited dyadic interventions and unified symptoms across NDDs, a transdiagnostic framework may help to enhance scalability and efficiency. To address this problem, we developed a transdiagnostic framework that cuts across NDD physical and emotional diagnoses to inform cost-effective and sustainable NDD dyadic interventions.

Methods

To develop this framework, we conducted: (1) a narrative review on dyadic adjustment and existent dyadic interventions for those with NDDs, and (2) integrated findings to develop our NDD transdiagnostic framework for dyadic interventions early after diagnosis.

Results

Findings revealed no existent dyadic interventions for NDDs delivered shortly after diagnosis. Among available interventions, all were delivered later in disease progression, thereby focusing on dyadic challenges at more advanced stages. In addition, although research emphasized the influence of individual, dyadic, and contextual factors on dyads' early adjustment to NDDs, no conceptual model has been developed. Informed by theory and current research, we introduce an NDD transdiagnostic framework for couples' early biopsychosocial adjustment. This framework includes NDD specific: contextual factors, illness-related factors, individual and dyadic stressors, adaptive coping strategies, and dyads' resources.

Conclusions

Our NDD transdiagnostic framework can be used to inform early dyadic psychosocial interventions that cut across all NDDs. This approach has important implications for implementation and scalability.