Together from the start: A transdiagnostic framework for early dyadic interventions for neurodegenerative diseases

Abstract

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.

A Live Video Dyadic Resiliency Intervention to Prevent Chronic Emotional Distress Early After Dementia Diagnoses: Protocol for a Dyadic Mixed Methods Study

“…Receiving a diagnosis of ADRDs can have a devastating impact on individuals and their care-partners given the lack of available ameliorative interventions or cures and insufficient support early postdiagnosis [ 18 , 34 ]. Prior research suggests that (1) dyads of individuals and their care-partners are interested in participating in early psychosocial interventions together, and (2) that it is feasible to adapt existing dyadic interventions to effectively and efficiently address early challenges to dyads following an ADRD diagnosis [ 26 , 32 , 51 ]. Comprehensive feedback from dyads can facilitate the development of such programs, and be used to promote alignment between patient, caregiver, and health care system perspectives on ways of optimizing ADRD clinical care.…”

“…This study is part of a larger 5-year study that aims to use the prior research, methodology, program content, and procedures of the Recovering Together program as a basis for developing the novel Resilient Together for Alzheimer Disease and Related Dementias (RT-ADRD). RT-ADRD will be developed sequentially using the National Institutes of Health stage model and prior research to guide intervention development [ 9 , 51 ]. The purpose of this paper is to describe the protocol for a mixed methods study involving patient and spousal dyads early after ADRD diagnosis that will inform the development of the first version of RT-ADRD ( Figure 1 ).…”

Protocol for Open Pilot of Resilient Together for Dementia: A Live Video Resiliency Dyadic Intervention for Persons with Dementia and Their Care-Partners Early After Diagnosis (Preprint)

“…Dyadic interventions may be a more effective, efficient, and economical avenue for promoting positive adjustment to ADRDs for individuals and their care-partners earlier in the course of the illness [21], [26]. Our team has developed successful dyadic interventions to prevent distress following medical adversity, including Recovering Together, a six-session dyadic resiliency intervention that addresses emotional distress in patients and informal care-partners shortly after neurointensive care unit admission for acute neurological conditions [36], [37].…”

Spilling over at the boiling point: A commentary on the need for dyadic approaches to psychosocial care with older adults and their care-partners in postacute rehabilitation.

“…Case conceptualization and intervention with older patient–care-partner dyads should account for variability in illness characteristics, relationships, and socio-contextual factors that influence dyadic distress, adjustment, and adaptation (Bannon et al, 2022; Berg & Upchurch, 2007). Below, we highlight important factors to consider when tailoring core intervention skills to address dyads’ unique needs in the context of postacute rehabilitation.…”