Competence, Autonomy, Relatedness, and Connections (CARe Connections): A Peer-Led Intervention Designed with Parkinsons Disease & Related Disorders Carepartners to Improve Holistic Support

Lewy-body dementia (LBD) is a neurodegenerative illness and the most common of a spectrum of Parkinsonian disorders called Parkinson’s and related disorders (PDRD). Notably, Lewy-body dementia has been specifically named by NIH as an Alzheimer’s and Related disorder (ADRD) and an area of high priority research. LBD includes Dementia with Lewy bodies, an illness characterized by early dementia, hallucinations and parkinsonism, and Parkinson’s Disease Dementia, an occurrence that affects over 75% of people with Parkinson’s and the leading cause of carepartner distress in this population. Despite this, carepartner support for LBD is not routinely addressed in current models of care, even when compared to other ADRDs. When it is addressed, the focus is on carepartner burden reduction. Support is likely to be incomplete, and possibly even harmful, when provided solely through a burden lens especially as carepartners themselves believe that there are positive aspects of caregiving and that it can be fulfilling. Providing adequate carepartner support is challenging without knowledge of carepartners’ views on caregiving and what matters to them. Stakeholder engagement research methods offer an important way to address this knowledge gap. The long-term goal is to use stakeholder engagement research methods to partner with carepartners and multidisciplinary teams and develop, test, and promote interventions and programs that promote balanced and carepartner-driven approaches to carepartner support. This proposal’s research objectives are to identify the dimensions and positive and negative aspects of LBD caregiving, adapt and co-design a peer-led intervention for this population, and conduct a pilot clinical trial. An intervention developed with LBD carepartners that goes beyond burden can improve carepartner preparedness, and wellbeing, and decrease social isolation. This is based on evidence from peer-led interventions in other diseases that have channeled the experiences and motivation of former carepartners to successfully address current carepartner concerns. This proposal has three specific aims: (1) Identify dimensions of LBD caregiving by collaborating with key stakeholders, (2) Adapt & design a peer-led pilot intervention for and with LBD carepartners, and (3) Assess feasibility and acceptability of the pilot intervention. The approach is innovative as it is the first within the field of Neurology to (a) identify what matters most to carepartners, (b) use stakeholder engagement research methods from design to delivery of an intervention, and (c) utilize a user centered design framework. The training objectives of this proposal will build on the applicant’s prior research experiences to learn new skills related to (1) Stakeholder Engagement Methods, (2) Intervention Adaptation and co-design, and (3) Design of Clinical Trials.