Objective: In this protocol we present a novel collaborative framework for a Huntington’s Disease (HD) Care Partner (CP) bootcamp series designed to train and support CPs and provide insight into a variety of topics within the unique caregiving challenges of HD.

Background: HD CPs have been shown to experience elevated levels of emotional distress, anxiety, depression, and loneliness.^{1, 2} The burden of HD caring has previously been suggested as higher than other common neurodegenerative disorders and HD CPs experience greater comorbid anxiety and depression compared to CPs for Parkinson’s Disease and the general population.^{2, 3} Given the challenges faced by HD CPs, there have been efforts to identify areas of need and ways to better support CPs, though there is currently no established framework for training and supporting HD carers.

Method: The program will be offered virtually and will entail a consecutive weekly series and interactive webinars 1-2 hours in duration with topic-related specialists; the final number and topics of webinar sessions will be determined with input from an HD care partner focus group with plan for up to 8-10 sessions. We will develop an associated workbook which will supplement the curriculum. Currently planned topics include: loss of independence and cognitive limitations, dealing with irritability and mood issues, advanced care planning, non-pharmacologic interventions, family dynamics, carer burnout, tips from movement disorders neurologist, and getting involved in HD.

Results: Prior to program initiation a HD care partner focus group questionnaire will be distributed to collect preferences regarding topics, session duration, time of day, and number of sessions. We will gauge effectiveness of the intervention through administration of The Huntington’s Disease Quality of Life Battery for Carers both prior to and after completion of the bootcamp. Participants will also complete a post-survey to provide feedback on the series and recommendations for future improvements.

Conclusion: Through developing and evaluating a Huntington’s Disease specific care partner bootcamp series, we aim to establish a generalizable framework and workbook that can be adapted globally to improve quality of life for HD patients and carers.

References: 1. Daemen MMJ, Boots LMM, Oosterloo M, de Vugt ME, Duits AA. Evaluating the web-based ‘Partner in Balance’ program for informal caregivers of people with Huntington’s disease: A pilot study. Internet Interv 2024;38:100782.
2. Exuzides A, Matos JE, Patel AM, Martin AA, Ricker B, Bega D. Understanding the Burdens Associated with Huntington’s Disease in Manifest Patients and Care Partners-Comparing to Parkinson’s Disease and the General Population. Brain Sci 2022;12(2).
3. Mitchell LA, Hirdes J, Poss JW, Slegers-Boyd C, Caldarelli H, Martin L. Informal caregivers of clients with neurological conditions: profiles, patterns and risk factors for distress from a home care prevalence study. BMC Health Services Research 2015;15(1).

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MDS Abstracts - https://www.mdsabstracts.org/abstract/developing-a-framework-for-huntingtons-disease-care-partner-training-and-support-hd-care-partner-bootcamp-series/