How COVID-19 Impact Huntington’s Disease Families

Financial concerns, pressure on family life, but also closeness to beloved ones and support. Here is how coronavirus pandemic has affected Huntington families in Italy and Scotland. 

The Scottish Huntington’s Association conducted a study with 25 young people living with Huntington’s disease, while La Lega Italiana Ricerca Huntington (LIRH) studied the impact of COVID-19 on more than 400 family members in Italy. 

Two main aspects were found in both of the countries: financial concerns and pressure on family life.

Concerns About the Financial Situation

In Italy, the caregiver was sometimes the only person with an income. However, due to the coronavirus, many people lost their job causing both financial damage but also pressure at home. 

Financial impact was also a great concern for the young respondents in Scotland. Here, 50 % worried about having enough money to pay for essential bills like food and fuel. Some also showed concern about the future:

“…as they would be starting to work for next year and there isn’t the same enough support as there would be in school.”

Learn more: Impact of COVID-19 on Young People living with Huntington’s Disease

The Impact of Isolation

In addition, isolation, social distancing and changes in care arrangements increased stress and pressure on some families. In Scotland, one of the young respondents said: 

“I can’t help my Grandad anymore as I don’t live with him and he can’t go to his respite. I am worried he will catch it and die.”

Moreover, isolation impacted the respondents directly by forcing them to refrain from social contact. In Italy children were not able to go outside and play with friends and in Scotland 72% of the young adults reported concern about becoming more isolated. 

Interestingly, LIRH found less discomfort in patients compared to family members in regard to social distancing. Here, people at a more advanced stage in the disease progression “were happy to share more time with their family members.”

Learn more: What we learnt by providing assistance to Huntington families during the Coronavirus’ emergency

Supporting Huntington Families

Despite the negative impact of COVID-19 on many of the young respondents, all of them were confident they would get the help they needed from the Scottish Huntington’s Association.

Supporting Huntington families was also an important aspect in Italy. Here, LIRH immediately set up online visits to provide assistance to families. Their experiences have been very positive: 

“[it gave] us the opportunity to interact with patients, children and family members – who probably would have not come to the clinic because intimidated by the idea of ‘going to a visit’. It allowed us to talk to each other without having to wear a mask and to break down the barriers of distance.” 

Moreover, the Italian foundation ended their study article with these closing remarks: 

“We have seen many people rediscover the value of small daily gestures and of the closeness to their beloved. Last, but not least, we had the confirmation that telemedicine – although it cannot in any way replace the warmth of physical contact – represents the future of health assistance.”

Want to learn more about COVID-19 and Huntington’s Disease? Take a look at our coronavirus resource!