Young people growing up in families with Huntington’s disease (HD) are becoming more isolated as they deal with increased pressures on them at home during lockdown, a Scottish charity is warning.
Scottish Huntington’s Association says extra caring responsibilities, being separated from loved ones in care homes, and worries about education and household income are taking their toll.
The charity carried out an extensive study of HD families, with specialist youth advisors speaking directly to a Scotland-wide sample group of under-25s whose lives are affected by Huntington’s disease. Most of the younger respondents were aged 14 to 17 years old.
Kirsten Walker, Youth Services Manager at SHA’s youth service (SHAYP), said: “We work closely with our young people, who have been very open and honest with us about what they’re going through right now. Growing up in an HD family brings challenges every day and life has become even more difficult during the pandemic.”
Huntington’s disease is incurable, and causes loss of motor function affecting movement, mobility, speech and the ability to swallow. Mental symptoms include changes in personality and behaviour, mood swings and serious psychiatric illness. As the disease progresses, 24-hour-care can become necessary, which means the affected parent leaving the family home and loved ones.
While witnessing the terrible toll of the illness, children of an HD parent grow up knowing there is a 50% chance that they have inherited the faulty gene, meaning they too will go on to develop the devastating symptoms.
SHA’s COVID-19 survey revealed widespread concerns among young people about the additional pressure on family life (81% of respondents) and increased isolation (72%) Separation from loved ones is having a major impact, with one young person stating:
“I’m not able to see my gran and grandad I can’t watch my sister’s baby boy grow up. I can’t see my family.”
For others, it’s about missing friends, activities they enjoy and milestone moments they had been looking forward to.
“I have just finished school and was due to start university in September. I haven’t been able to take my exams or have my prom. I had plans for the summer which have all been postponed. I’m isolating at home alone with my parent,” said another.
The impact on education was flagged by 72% of young people, many of whom are juggling studying at home with increased caring responsibilities. Findings revealed that 65% of the young people are providing support to someone with HD in their family, while 40% are worried about COVID-19 infections and the lockdown at care homes where loved ones are being looked after.
Impact on mental health (29%); a drop in household income due to salary cuts or furlough (67%); worries about paying bills (50%), fear over police action against an HD family member for not understanding social distancing (29%) and increased debt (62%) also emerged as key themes.
Kirsten added: “At this time of year, we’re usually getting ready for our annual residential trip, when we take 50 young people away for respite and time with friends from other HD families. There are fun activities but it’s also a chance to learn more about Huntington’s disease and to help the young people to build the resilience they need to have. It’s the highlight of the year, and when they get older many young people return as volunteers because it’s a positive and rewarding experience.
“This summer is very different. We’re holding online group sessions to reduce isolation, improve mental wellbeing and bring friends together, while specialist youth advisors are staying in touch 1-2-1 to provide our young people with vital support. The conversations we’re having every day, combined with the findings of the survey, tell us this is more needed than ever right now.”