By: Emily Truscott, MS, LD, RD
Huntington’s disease (HD) is a genetic brain disorder that affects movement, behavior, emotions, and thinking skills.1 Over time, these changes can make everyday tasks, such as walking, eating, and talking, more difficult. People with HD often face nutritional challenges, and as their ability to do things on their own declines, their caregivers take on more responsibilities.2,3 Mealtimes can become complicated as a result. Self-feeding and swallowing trouble might change the types of foods caregivers have to prepare. Uncontrolled movements could make eating messier, leading to more cleanup for caregivers. Since these challenges can put more stress on patients and their families, a team-based approach that includes nutrition and social work is important for improving quality of life and managing symptoms in individuals with HD.
Respective Roles of Social Work and Nutrition
Social workers play a vital role in helping patients and their families by identifying complex needs and connecting them with important resources. Alana McKay, Licensed Clinical Social Worker at the Norman Fixel Institute for Neurological Diseases at UF Health, describes how she meets with patients and their families “to assess how they are coping physically, behaviorally, and emotionally.” When challenges arise, social workers help families explore different solutions. “This can include applying for disability, finding resources in their community, brief interventional and/or supportive counseling, discussion of advance directives, resources for financial planning, and assistance with placement outside of the home if the family is no longer able to provide care at home,” says McKay.
Dietitians also play a crucial role in helping patients and their families navigate nutritional challenges. People with HD might be faced with swallowing difficulties, weight loss, and malnutrition.2 Dietitians provide strategies to adapt food intake to each stage of the disease to support good nutrition status.
Nutrition Challenges at Mealtimes
The movement problems, emotional changes, and swallowing difficulties associated with HD can have a significant impact on nutrition. As the disease progresses, eating enough food becomes more difficult, increasing the risk of unintentional weight loss and malnutrition. Someone with HD may require extra calories to maintain a healthy weight.2 At the same time, poor coordination can make feeding oneself challenging. This often requires caregivers to provide assistance or introduce adaptive utensils and dishware. Emotional and cognitive changes may further complicate mealtimes. Depression, medication side effects, and reduced appetite can make eating less appealing.1 Encouraging frequent, nutrient-dense meals becomes essential to ensure adequate intake. Swallowing difficulties also pose a serious risk. Frequent choking can lead to aspiration pneumonia, a potential life-threatening complication.4
To help manage these challenges, dietitians work closely with caregivers to create high-calorie, easy-to-swallow meals that meet the patient’s dietary needs. This might include blending nutrient-rich smoothies, modifying food textures, or incorporating oral nutrition supplements. In
advanced cases, when oral intake is no longer sufficient, patients may consider getting a feeding tube.4 Caregivers play a critical role in this process, assisting with tube care and managing feedings to maintain proper nutrition.
Mealtimes and Social Impact
Nutritional challenges affect not only the patient’s physical health, but they also take an emotional toll on both patients and caregivers.3 Mealtimes, which are often a time for connection and conversation, can become stressful for both patients with HD and their families. Discussing the obstacles faced by patients and families, McKay explains, “Drinks get spilled, and food goes all over the table and onto the floor…When someone is having difficulty swallowing, they may cough and choke frequently while eating. If cognition is changing, they may be more impulsive which leads to taking large bites of food and not chewing thoroughly before swallowing.” She notes these challenges can be “frustrating to the person eating and those eating with them and makes it difficult to sit down and enjoy a meal and have a conversation.”
When caregivers feel overwhelmed by increased mealtime demands, social workers can provide support by connecting families with local or online support groups, identifying meal assistance programs or home health services, and discussing feelings of caregiver burnout. By addressing these unique mealtime challenges, caregivers, patients, and their healthcare team can foster a more positive dining experience despite the difficulties.
Bridging Nutrition and Social Support in Patient Care
Since both nutrition and social work are important areas in HD care, collaboration between the two providers is essential. A team-based approach ensures patients receive well-rounded support, addressing both physical and emotional challenges. For example, a dietitian might recommend a texture-modified diet to reduce choking risk, while a social worker connects the family with resources to help ease the financial burden of implementing diet changes. If a caregiver is struggling to meet the demands of preparing specialized foods, a social worker can connect them with in-home care services that allow the family to focus on other aspects of caregiving. By working together, dietitians and social workers help support quality of life for both patients and caregivers.
Take Away
Huntington’s disease presents many challenges, especially when it comes to nutrition, caregiving, and the social aspects of mealtimes. As the disease progresses, nutrition challenges can lead to weight loss, malnutrition, and added stress on families.2,3 However, a team approach that includes both nutrition and social work can address these issues. By talking with the dietitians and social workers available to them, patients and their families can navigate HD difficulties with greater confidence and support.
Resources
For more resources, please visit the Huntington’s Disease Society of America (Huntington’s Disease Society of America) website.
The Fixel Institute is a HDSA Center of Excellence (HDSA Center of Excellence at University of Florida – Huntington’s Disease Society of America). If you are located in Gainesville, Florida and are interested in becoming a patient, please call 352-394-5400 to make an appointment.
If you live outside of the Gainesville area you can search on the Healthcare Professional Resources (Healthcare Professional Resources – Huntington’s Disease Society of America) tab for your area.
References:
1. Ajitkumar A, Jesus OD. Huntington disease. In: StatPearls. NCBI Bookshelf version. StatPearls Publishing; 2025. Accessed February 11, 2025. https://www.ncbi.nlm.nih.gov/books/NBK559166/
2. Gaba A. Nutrition and Huntington’s disease – A review of current practice theory. Curr Nutr Rep. 2025;14(1):18. doi: 10.1007/s13668-025-00610-x
3. Modrzejewska-Zielonka E, Ren M, Mlodak A, Marcinkowski JT, Zielonka D. Huntington’s disease progression and caregiver burden. Eur Neurol. 2022;85(5):398-403. doi: 10.1159/000524146
4. Pizzorni N, Ciammola A, Casazza G, et al. Predictors of malnutrition risk in neurodegenerative diseases: The role of swallowing function. Eur J Neurol. 2022;29(8):2493-2498. doi: 10.1111/ene.15345