People with Huntington’s disease (HD) may develop a number of symptoms which can be identified by other people. These symptoms include uncontrollable muscle movements, difficulty with swallowing, and struggling to move around. These symptoms are often the focus for many research projects because they are easier to recognise for other people, as problems that people with HD can face. However, what about social struggles people with HD may have, which are not as obvious to other people? Scientists are now beginning to investigate these less obvious effects of HD because there is an increasing awareness of how much these can impact an individual and their quality of life.

The missing link – a connection between quality of life and social skills?

Quality of life simply means how satisfied a person is with their life, overall. Quality of life may be considered from multiple approaches. Some of these approaches include, physical well-being (how healthy someone feels), emotional well-being (mood and mental health), and social well-being (strength of relationships and how supported they feel). Physical, emotional, and social well-being are believed to be the three building blocks to determine a person’s quality of life.

People with HD may struggle with social skills, causing greater difficulty with social situations. For example, understanding and explaining how other people might feel in particular social situations. In addition, people with HD may experience an increased difficulty in understanding emotions from facial expressions and body language in other people.

Previous scientific research has uncovered two interesting findings about people with HD. Firstly, they have shown that quality of life is reduced in people with HD (particularly at later stages of the condition), compared to the general population. Secondly, some people with HD have greater difficulty with social situations. However, scientists had not yet researched if there was a link between these two ideas until recently, in work led by Professor Hugh Rickards from the University of Birmingham in the United Kingdom.

So, how do we tap into our life satisfaction radar?

Hugh and his team are studying what could link these two ideas, on quality of life and difficulties with social situations in people with HD. To understand quality of life, a questionnaire was given to people with HD that measures physical, emotional, and social well-being.

Scientists also asked people with HD questions about feelings they were experiencing. Some questions explored how frustrated people with HD could become, or how overwhelmed they felt. These questions helped scientists to understand the many different emotions people with HD can experience.

Scientists were particularly interested if people with HD were having trouble expressing their usual feelings. For example, your friend has a real sweet-tooth and presenting them with their favourite bar of chocolate usually makes them feel very happy. However, one day you give your friend their favourite chocolate bar and strangely, they do not seem to express any feelings of happiness. This represents a situation where a person may not be expressing their usual feelings.

“The key message from these findings is that when people with HD struggle to understand social situations, it can really affect their quality of life. ”

What’s your social IQ?: measuring interpersonal skills in people with HD

To understand difficulties with social situations, people with HD were invited to complete different tasks. One example is the ‘Animations Task’. In the Animations Task, people with HD watched cartoons of two triangles. These triangles moved in ways that looked like real-life social situations. For example, two triangles dancing together, or one triangle trying to ‘persuade’ the other triangle to come out of the box. After watching the cartoon, people with HD had to explain what they thought the triangles were doing.

How well people can think and plan activities may also affect how they respond to social situations. Imagine a chef preparing a complicated meal. The chef would have to plan what ingredients they need to gather, organise the pots and pans needed, and control their impulses to eat the entire lasagne in one go! This is the perfect example of the many important skills required when thinking and planning activities.

One question you might be wondering is, how were these thinking and planning skills measured in people with HD? These skills were measured using a ‘Trail Making Test’. In part one of this test, people with HD had to draw lines between circles which each contained a number in the centre (from numbers 1-25). These lines had to connect the circles from the lowest number to the highest number.

Part two of this test was more complicated. This time, there were circles containing letters (A-L) and circles containing numbers (1-12). People with HD had to switch between drawing lines from circles with numbers, to circles with letters. They joined the circles up from the lowest number to the highest number and in alphabetical order. For example, a line would be drawn from circle 1 to circle A and then from circle A to circle 2, and so on. This task helped to give the scientists a measure of how well people with HD can think and plan.

Does being the Sherlock Holmes of social skills mean a happier life?

This study found that a reduced quality of life (specifically, a decrease in social and emotional well-being) in people with HD could be predicted by several social skills and behaviours. One social skill that predicted a reduced quality of life in people with HD is the ability ‘to put yourself in someone else’s shoes’ to figure out their thoughts and feelings.

This was shown in the study when people with HD, who had a poorer overall social well-being, were less likely to be able to explain what the cartoon triangles looked like they were doing (in the Animations Task). For example, one triangle appears to be trying to persuade or encourage the other triangle to come out of a box. When people with HD (who had a lower social and emotional well-being) were asked to explain what the triangles were doing in this video, they simply described that the triangles appear to be ‘moving’ around each other.

Additionally, the results concluded that a reduced quality of life in people with HD could also be linked to having trouble expressing their usual feelings (think back to the chocolate bar example).

Take a deep breath and make a plan

Another interesting finding from this study suggested that a reduced quality of life (in terms of a person’s ability to carry out daily tasks at work and/or home), in people with HD, can be linked to how overwhelmed or frustrated they feel. This decreased ability to carry out daily activities could also be due to having trouble when trying to plan activities (remember all those important planning and organisational skills a chef needs to make the perfect lasagne!).

Together, these results may hint that by improving these particular social skills in people with HD, it could improve their quality of life.

“Some specific social skills to address include, improving people’s ability to express their feelings, addressing their difficulties with planning and organisation, or tackling their feelings of frustration. ”

In a nutshell: key insights and the road ahead

The key message from these findings is that when people with HD struggle to understand social situations, it can really affect their quality of life. In the future, scientists should consider exploring solutions to help people with HD improve their social skills.

Some specific social skills to address include, improving people’s ability to express their feelings, addressing their difficulties with planning and organisation, or tackling their feelings of frustration. This is because these are the social skills that have been highlighted as important in determining quality of life, in people with HD.

So no need to break out your cherrywood pipe or wool plaid hat to search for hidden jewels - working on these social skills could be the gem itself in improving quality of life and increased feelings of happiness for people with HD.

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