Mapping the landscape of caregiver burden in Huntington's Disease: Current evidence and future directions

IntroductionHuntington's Disease (HD) is a rare neurodegenerative disease that profoundly affects both individuals diagnosed with the condition and their caregivers. This review aims to examine the burden experienced by informal caregivers of patients with HD and identify relevant factors that exacerbate or mitigate this burden.MethodsThe PRISMA guidelines were followed, and an extensive search of electronic databases (PubMed, Science Direct, Taylor & Francis) was undertaken to identify original research articles published in English between January 2005 and April 2025. Two reviewers independently screened the studies. The quality of the studies was evaluated using the Critical Appraisal Program (CASP). Data were extracted, and a narrative synthesis was conducted to integrate and summarize the results.ResultsTwelve studies were included in the review involving 569 caregivers of patients with HD. Studies were conducted in Europe, the United States, Canada, and Australia, with one taking place in South Korea. Patient demographics, caregiver characteristics, disease-related factors, disrupted family dynamics, caregivers' compromised mental health, and availability to access networks are related to caregiver burden. Neuropsychiatric symptoms and the hereditary nature of the disease have been identified as important correlates of caregiver strain.ConclusionCaring for individuals with HD involves a distinct and multifaceted burden shaped by both the nature of the illness and inadequate external support. Addressing this requires future research to develop tailored interventions and tools that reflect the unique needs of HD caregivers across varying stages and cultural contexts.