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

Abstract

Introduction

Huntington'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.

Methods

The 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.

Results

Twelve 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.

Conclusion

Caring 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.

Plain language summary

Huntington's Disease (HD) is a rare and progressive brain disorder that causes significant changes in movement, thinking, and behavior. These changes not only impact individuals living with HD but also place a substantial burden on their family members and friends who provide care. This review examined research studies published between 2005 and 2025 to better understand the experiences of informal (unpaid) caregivers of people with HD. Twelve studies involving 569 caregivers were included. The findings showed that caregiver burden is related to several factors, including the severity of the patient's symptoms, the mental health of the caregiver, changes in family roles, and the availability of external support. Notably, the cognitive and behavioral symptoms of HD, along with its hereditary nature, were identified as major sources of stress for caregivers. Overall, this review highlights that caring for someone with HD involves complex and unique challenges. There is a clear need for targeted support services and interventions that address the specific needs of HD caregivers, taking into account the different stages of the disease and cultural differences in caregiving environments.