More Than Just Food: The Hidden Challenges of Eating with Huntington’s Disease

Among the problems faced by people with Huntington’s disease (HD), a common one is weight loss. Many individuals with the disease lose weight over time, even when they are trying to eat enough. This has no small impact: weight loss can affect strength and lead to several health complications which can ultimately translate into reduced quality of life.

A new study by researchers from the University of Hull in the United Kingdom (UK) investigated how eating problems affect people with HD. It aimed to explore how both clinical professionals (e.g., paramedic, nurse, genetic counsellors, neurologists) and individuals with HD understand, experience, and ultimately manage these challenges.

How the Study Was Carried Out

To learn more about the real-life experience of eating problems in HD, the researchers interviewed 19 people across the UK. Ten of them were professionals (such as nurses, doctors, and advisors who work in the field of HD), while nine were people living with HD, in some cases accompanied by their partners or carers. The interviews were semi-structured, which means the researchers had a general plan of the questions they wanted to ask but also allowed participants to speak freely and lead the conversion. 

Following the interviews, the resulting data were analysed with a qualitative technique called ‘reflexive thematic analysis’, which helps researchers make sense of the discussions by looking for patterns of meaning across what people said. More specifically, this type of analysis involves a structured way of reading through people’s words, spotting repeated ideas or meanings, grouping them into themes, and being honest about how the researchers’ own viewpoints may influence that process. 

The results of the analysis highlighted six major themes about eating difficulties and weight loss in people with HD.

Theme 1: Common Strategies for Weight Gain Do Not Always Work

The first theme was about the usual ways professionals try to help people with HD gain or maintain weight, which includes adding extra calories to meals, such as using cream, butter, cheese, full-fat milk, and high-calorie drinks or shakes. However, the study found that these methods are not always easy to follow.

Some people with HD felt like they had to eat all day, which can become tiring and cumbersome. Others did not like the taste or texture of the supplements, or experienced unpleasant side effects linked to them, such as constipation. This shows that, although high-calorie diets are commonly prescribed to people with HD, they may not work well for everyone in real life.

Participants highlighted that medications are also sometimes prescribed to help with appetite, but these are not a perfect solution either. Medicines can indeed have side effects, and there is currently no single standard medicine plan to address weight loss in people with HD.

Theme 2: Access to Healthcare is Unequal

The second theme described how difficult it can be for people with HD to get the right healthcare support. The study found that care can vary depending on where a person lives, as some people have access to specialist teams, while others do not. This was described as a kind of ‘geographical lottery’ which may leave many individuals affected by HD without proper care. 

More specifically, the clinical professionals in the study said that the management of eating issues in people with HD often requires input from different specialists, such as dietitians, speech and language therapists, occupational therapists, psychologists, nurses, and doctors. For example, speech and language therapists can help with swallowing problems, while occupational therapists can help with the practicalities of preparing food at home. However, due to the ‘geographical lottery’, not every person with HD may get access to these services when they need them.

In addition, since HD is not very common, some professionals may not fully understand that it involves eating and weight problems. This can lead to delays, confusion, or people ‘falling through the cracks’ of the healthcare system.

Theme 3: Mental Health Can Affect Eating

The third theme focused on how cognitive and mental health difficulties can lead to weight loss. For instance, people with HD who experience cognitive problems may forget to eat or find it hard to plan meals, go shopping, and follow the steps needed to prepare food. Even simple tasks can become difficult if the individual with HD has significant problems with memory or organisation.

Mental health difficulties can also play a big role in this. Depression can reduce appetite, and apathy can make people feel unmotivated to eat. As a consequence, a person with HD might know they need food but still struggle to begin the task of eating or cooking.

Theme 4: Physical Symptoms Make Eating Harder

The fourth theme was about the physical problems that make eating difficult. One major symptom of HD is chorea, the involuntary movements that the person cannot control. These movements can burn a lot of energy, making it harder for people with HD to keep a healthy weight.

Chorea can also make eating physically difficult. A person may struggle to hold cutlery, keep food on a plate, or bring food safely to their mouth. Some people may need bowls instead of plates, or special cutlery to make eating easier.

Swallowing problems (also called ‘dysphagia’) can be another major issue. Many people with HD have trouble swallowing and may risk choking on certain foods. This can understandably make eating scary, tiring, and stressful. Fatigue can also have an impact, because swallowing problems can lengthen mealtimes, and a person with HD may become tired before finishing their food.

Theme 5: Eating Problems Can Affect Social Life and Family Life

The fifth theme revolved around the social and emotional impact of eating problems. Eating is not only about getting nutrients into one’s body, it is also a highly social activity. People often eat with family, friends, or in restaurants. But for people with HD, eating in front of others can become embarrassing or stressful.

More specifically, some people with HD may worry that others will notice their involuntary movements or see them spilling food or needing help. Because of this, they may stop going out for meals or avoid eating with other people, which can lead to loneliness and isolation. Carers and family members are often affected too, as they may need to help with meals, watch for choking, or support the person with HD during difficult eating situations. This can be stressful and time-consuming. 

Theme 6: People Do Not Always See Weight Loss as a Problem

The sixth and last theme was about the way people understand and react to weight loss. More specifically, clinical professionals often see weight loss as a serious problem in HD. However, some people with HD may not notice their weight loss or may not think it is important. In other cases, people with HD may even see weight loss as a positive thing, especially if they previously wanted to lose weight. This can make it harder for professionals and families to encourage them to get help.

At times this may also be linked to reduced insight, meaning that the person with HD may not fully recognise changes in their own health. Because weight loss can happen slowly over time, it may not seem urgent to the person experiencing it and may go unnoticed for a long time, making its management even harder.

Conclusion

This study highlighted that eating problems in people with HD are much more complicated than they may first appear. Weight loss is not caused by one single issue. Instead, it can be the result of physical symptoms, swallowing problems, cognitive problems such as memory loss and poor planning, mental health difficulties such as depression and apathy, and social issues such as unequal access to healthcare and social embarrassment. 

For these reasons, the researchers argued that weight loss treatment in people with HD should be holistic, meaning that it should look at the affected individual as a whole rather than just trying to add calories to their meals. Overall, they made it clear that managing eating problems in people with HD is not only about food, but also about dignity, independence, health, and quality of life.

Summary

• Huntington’s disease (HD) often causes weight loss and eating problems.
• These problems happen for many reasons, including involuntary movements, swallowing difficulties, memory problems, and low mood and low motivation.
• Common treatments include giving people high-calorie foods and supplements, but these do not always work well because they can be hard to keep up with.
• Healthcare support is not equal everywhere, so some people with HD may get better help than others.
• Eating problems can also cause embarrassment, social isolation, and stress for carers and families.
• Treatment of eating problems in people with HD should be holistic, meaning it should support both the physical and emotional needs of affected individuals.