How Many Calories Does a Person With Huntington's Need?

January 13, 2026 •

4 min read

Research indicates that people with Huntington's disease often have a higher than average calorie requirement to combat unintentional weight loss. Understanding how many calories does a person with Huntington's need is crucial for managing this complex neurological condition and maintaining overall health.

Quick Summary

Many people with Huntington's require significantly higher calorie intake to prevent weight loss caused by involuntary movements and hypermetabolism. Specialized dietary strategies are essential for weight maintenance.

Key Points

High Calorie Needs: People with Huntington's disease often need significantly more calories (potentially 3,500-5,000+ per day in later stages) to prevent weight loss due to involuntary movements and a heightened metabolic rate.
Combatting Weight Loss: The combination of increased energy expenditure (from chorea) and reduced food intake (due to eating difficulties) creates a major risk for unintentional weight loss.
Prioritize Nutrient and Caloric Density: Focus on foods rich in calories and nutrients, such as full-fat dairy, nut butters, avocados, and sauces, to maximize intake from smaller portions.
Manage Dysphagia: Swallowing difficulties require dietary modifications like softer textures and thickened liquids, best managed with guidance from a speech-language pathologist.
Work with Professionals: A registered dietitian and a speech-language pathologist are vital for creating a personalized nutritional plan and safely addressing challenges associated with feeding.
Consider Adaptive Strategies: Using specialized cutlery, cups, and implementing smaller, more frequent meals can make eating more manageable and enjoyable.

Understanding Increased Calorie Needs in Huntington's

For individuals living with Huntington's disease (HD), maintaining body weight can be a constant challenge. The involuntary, irregular, and unpredictable muscle movements known as chorea can significantly increase the body's energy expenditure. This increased energy consumption, combined with other potential metabolic changes, means that a person with HD often requires far more calories than a standard dietary intake to prevent severe and dangerous weight loss. In some advanced cases, daily caloric needs can soar to between 3,500 and 5,000 calories just to maintain weight. However, these are general estimates, and individual requirements vary greatly depending on the stage of the disease, the severity of chorea, and other health factors.

Factors Influencing Nutritional Needs

Several factors can interfere with a person's ability to eat and absorb sufficient calories:

Motor Impairments: Chorea and reduced motor control can make self-feeding difficult, leading to spills, frustration, and reduced food intake.
Dysphagia: Difficulty swallowing, or dysphagia, is a common symptom that increases the risk of choking and aspiration pneumonia, which can cause individuals to avoid eating.
Cognitive Changes: Cognitive decline, memory problems, and a lack of appetite or motivation can cause a person to forget to eat or not recognize hunger cues.
Hypermetabolism: Studies suggest that metabolic changes can occur even in pre-manifest stages of HD, indicating an underlying issue with energy regulation that contributes to weight loss.

Strategies for Increasing Calorie and Nutrient Intake

Managing nutrition for someone with HD requires a multi-faceted approach focused on both caloric density and safety. Below are practical strategies to help meet the high energy demands:

Small, Frequent Meals: Eating smaller portions every few hours is often easier to manage than three large meals, especially when fatigue or a poor appetite is present.
Fortify Meals and Drinks: Adding extra calories to regular foods and beverages is a simple and effective technique. Examples include adding extra butter, oils, or cheese to savory dishes and cream, full-fat milk, or honey to sweets and cereals.
Focus on Nutrient-Dense Foods: Prioritizing foods that pack a caloric punch in a small volume is key. These include avocados, nut butters, full-fat dairy products, and soups.
Adapt Food Consistency: As swallowing difficulties arise, modifying food texture is critical. A speech-language pathologist can provide recommendations for thickened liquids and soft, moist, or pureed foods.
Use Adaptive Equipment: Specialized utensils with larger handles, plate guards, and sports cups with straws can make eating and drinking more manageable and less frustrating.

Table: Nutritional Strategies by Disease Stage


Feature	Early Stage	Mid-Stage	Late Stage
Calorie Needs	Moderately increased due to metabolic changes; focus on weight stabilization.	Significantly increased due to pronounced chorea and hypermetabolism.	Very high, potentially up to 5000+ kcal/day to maintain weight.
Eating Habits	Maintaining a balanced, well-rounded diet; may benefit from smaller, more frequent meals.	Smaller, more frequent meals and snacks (5-6 mini-meals) to combat fatigue and poor appetite.	Round-the-clock feeding may be needed; potential transition to tube feeding.
Food Texture	Regular textures are typically tolerated, but focus on easy-to-chew foods to prevent choking.	Diet adaptation with soft, moist, or pureed foods as dysphagia progresses.	Primarily pureed diets and thickened liquids; often supplemented by or transitioned to tube feeding.
Key Focus	Preventing initial weight loss and establishing good eating habits.	Managing swallowing difficulties and maximizing caloric intake through fortification.	Ensuring adequate nutrition and hydration via the safest and most efficient method possible.

Professional Guidance and Support

Working with a healthcare team is essential for managing nutrition in HD. A registered dietitian can perform a nutritional assessment, determine individual calorie and protein needs, and create a specialized care plan. A speech-language pathologist (SLP) is crucial for assessing and managing swallowing difficulties, ensuring that food textures and liquids are safe for consumption. The care team can also provide support and guidance for caregivers, who often face significant challenges in meal planning and preparation. Early and regular involvement with these professionals is vital for adapting to the disease's progression.

For more detailed information on nutrition in Huntington's disease, the Huntington's Disease Society of America offers excellent resources, including specific strategies for increasing calories and addressing common feeding challenges. For additional information, visit the HDSA website.

Conclusion

The question of how many calories does a person with Huntington's need is complex and highly individualized, but it is clear that requirements are typically much higher than average. The increased energy expenditure from chorea, coupled with eating difficulties, creates a nutritional gap that must be intentionally addressed. By prioritizing calorie-dense foods, implementing frequent small meals, and working closely with a dietitian and speech-language pathologist, it is possible to maintain weight and support overall health throughout the disease's progression. Proactive nutritional management is a cornerstone of care for individuals with Huntington's disease.

Frequently Asked Questions

Individuals with Huntington's often need more calories due to involuntary movements called chorea, which burn a significant amount of energy. Additionally, metabolic changes can contribute to a higher overall energy expenditure, or hypermetabolism.

There is no single recommendation, as calorie needs are highly individual. However, some sources suggest that 3,500 to 5,000 calories per day may be necessary in mid to late stages. Working with a dietitian is essential to determine specific calorie goals.

You can add extra calories by incorporating full-fat dairy products like cream, whole milk, and cheese. Adding extra butter, oils, or nut butter to foods is also effective. Snacks like milkshakes, puddings, and ice cream can also be helpful.

If swallowing becomes an issue, a speech-language pathologist should be consulted. They can recommend strategies like thickening liquids and altering food textures to be softer or pureed, making them safer to consume.

It is generally better to opt for smaller, more frequent meals and snacks (e.g., 5-6 mini-meals per day). This can help manage a poor appetite, fatigue, or chewing difficulties that make large meals challenging to finish.

A registered dietitian is crucial for conducting nutritional assessments, calculating calorie and protein needs, and creating a specialized dietary plan. They work with the care team to monitor weight and provide ongoing adjustments.

A feeding tube may be considered in the later stages of Huntington's when oral intake is no longer sufficient to meet nutritional needs or is unsafe due to severe swallowing difficulties. This decision is made in consultation with the healthcare team and family.