Summary
We delivered a five-day residential Summer Camp at Lagganlia Outdoor Centre, Aviemore, from 6th to 10th July 2026 for young carers aged 8 to 25 from families impacted by Huntington's disease. 50 young carers registered to attend, with 46 participating following four cancellations due to illness and changing family circumstances. The camp provided a valuable break from caring responsibilities. Many of the participants provide emotional support, practical assistance, household responsibilities and supervision of a parent impacted by Huntington's disease, with most undertaking caring roles daily. Many of young carers have limited opportunities to access respite or connect with others who understand the challenges of living in a family impacted by Huntington's disease. The young carers took part in a wide range of outdoor adventure activities including canoeing, mountain biking, gorge walking and quad biking, alongside social and wellbeing activities designed to build confidence, resilience and friendships. The programme also included age-appropriate group work sessions (unfunded aspect of the camp), one-to-one support and specialist presentations focused on caring, emotional wellbeing, future planning, Huntington's disease research and adult transitions. Dedicated sessions for young adults aged 18+ enabled participants to explore issues relevant to adulthood while strengthening peer support networks. The camp brought together young people from across Scotland, with 93% identifying as young carers and 10 participants attending for the first time. The 7% had a parent who either passed away or went into care before the event. Throughout the week, young carers developed lasting friendships, increased their understanding of Huntington's disease, improved confidence and wellbeing, and benefited from a supportive community of peers and staff. The residential also provided reassurance and respite for families, knowing their children were safe, supported and enjoying positive experiences during the summer holidays.
What Scottish Huntington's Association has learned
The project reinforced the value of residential short breaks in reducing isolation and improving wellbeing for young carers impacted by Huntington's disease. Bringing together young carers with shared experiences created a strong sense of belonging and enabled supportive peer relationships to develop naturally throughout the week.
We found that providing a balance of outdoor adventure activities, structured group work and free time helped meet a wide range of needs and interests. The dedicated programme for young adults aged 18-25 was particularly successful, allowing participants to discuss topics relevant to adulthood, future planning and living with Huntington's disease.
The project also highlighted the importance of supporting first-time attendees before and during the residential, as some young carers experienced anxiety about attending. Regular communication with families and tailored support helped participants settle in and fully engage with camp activities.
We learned that flexibility is essential when delivering programmes for young carers with differing ages, confidence levels and support needs. Creating a safe, inclusive environment and offering opportunities to participate at individual comfort levels helped maximise engagement and positive outcomes for all participants.
Impact on beneficiaries
The Summer Camp made a significant difference to the young carers who attended, providing a valuable break from the emotional and practical responsibilities associated with caring for a family member impacted by Huntington's disease. For many participants, this was an opportunity to step away from their caring role, focus on their own wellbeing and enjoy experiences that would otherwise be difficult to access.
Through outdoor activities, group discussions and social opportunities, young carers developed greater confidence, independence and resilience. Staff observed increased participation, stronger peer relationships and growing self-esteem throughout the week, while parents reported noticeable improvements in confidence and wellbeing after participants returned home. Many young carers also formed lasting friendships with peers who understood their experiences, helping to reduce feelings of isolation and creating support networks that continue beyond the residential.
The camp provided opportunities for participants to learn more about Huntington's disease, discuss their caring responsibilities and gain reassurance from others facing similar challenges. This helped many feel better informed, less alone and more confident in managing future challenges within their families.
The benefits extended to the people they care for. Family members were reassured knowing that their children and young adults were safe, supported and enjoying positive experiences in a nurturing environment. Parents reported that participants returned home happier, more positive and better equipped to cope with the demands of caring and family life. As a result, the project contributed to improved wellbeing for both unpaid carers and the wider families they support.