The holistic burden of Huntington's disease: A qualitative study of multigenerational impact on individuals and family caregivers across Europe

Abstract

Huntington's disease (HD) is a progressive, inherited neurodegenerative condition that imposes a profound, multidimensional burden on individuals with HD and their families. This qualitative study explored the physical, emotional, socioeconomic, and intergenerational impact of HD across six European countries, drawing on interviews with individuals diagnosed with HD and family caregivers. Findings reveal that HD disrupts daily functioning, employment, relationships, and long-term planning. Cognitive and psychiatric symptoms were particularly burdensome, driving declines in quality of life (QoL) and emotional well-being. Caregivers reported extensive physical, financial, and psychological strain, with many assuming care responsibilities from a young age or eventually caring for multiple relatives. These burdens frequently spanned generations, with participants describing how HD shaped their upbringing, reproductive choices, and expectations for future caregiving.

Despite some optimism regarding future research, participants expressed concern that therapeutic advances would not arrive in time to benefit them, reinforcing the urgency for non-pharmacological support. There was strong support for more accessible, consistent, and family-centred care models that integrate clinical services with psychosocial and financial supports. Participants emphasized the importance of early diagnosis, proactive care planning, and coordinated support networks to mitigate caregiver burden and improve long-term outcomes.

These findings underscore the need for healthcare systems and policies to move beyond symptom management and address HD as a multigenerational, systemic challenge which needs to be met with a holistic model of care responsive to the evolving needs of both patients and caregivers.