How to Help Someone With Huntington’s Disease 

Caring for someone with Huntington’s disease (HD) can be challenging. As the disease progresses, a person may experience changes in movement, thinking, communication, mood, behavior, eating, and their ability to manage everyday activities. 

However, support does not have to mean taking over every part of their life. The goal is to help the person remain as safe, comfortable, independent, and involved in daily life as possible. 

 Because Huntington’s disease affects people differently, care should be personalized and adjusted as symptoms change. A healthcare team may include neurologists, nurses, physical and occupational therapists, speech-language pathologists, dietitians, mental health professionals, and social workers.  

Here are practical ways to help someone with Huntington’s disease. 

Learn About Huntington’s Disease

One of the most helpful things you can do is understand how HD affects the person you are caring for. 

Huntington’s disease is a progressive genetic disorder that can affect movement, cognition, emotions, behavior, and communication. Common symptoms may include involuntary movements, difficulty walking and balancing, changes in judgment and memory, depression or irritability, speech difficulties, swallowing problems, and unintended weight loss.   

Learning about these symptoms can help you recognize that some behaviors or difficulties are symptoms of the disease rather than intentional choices. 

For example, someone who has trouble organizing tasks may need more structure and reminders. Someone who speaks slowly or has difficulty finding words may need extra time to communicate. 

Understanding the condition can make it easier to respond with patience rather than frustration. 

Encourage Independence

It can be tempting to do everything for someone with Huntington’s disease, especially when everyday activities become more difficult. 

However, maintaining independence is important. Let the person participate in tasks they can still safely manage, even if those tasks take longer. 

You might: 

• Allow them to choose what to wear. 
• Let them participate in meal preparation when appropriate. 
• Give them choices rather than making every decision for them. 
• Adapt activities so they can continue doing them safely. 
• Use assistive equipment when recommended. 
• Give them enough time to complete tasks. 

 The goal is not to make everything effortless. It is to help the person continue participating in their own life. 

Huntington’s Australia (HA) promotes independence and freedom of choice while maintaining safety for the individual, family, and care team.  

Make Communication Easier

Communication can become increasingly difficult as Huntington’s disease progresses. Speech may become slower, less clear, or unpredictable. 

 When talking with someone with HD:  

• Give them time to finish speaking. 
• Avoid interrupting or completing every sentence for them. 
• Reduce background noise and distractions. 
• Ask one question at a time when necessary. 
• Use simple, direct language. 
• Confirm that you understood what they meant. 
• Consider writing, gestures, communication boards, or other tools if speech becomes difficult. 

Most importantly, continue talking with the person rather than talking about them as though they are not present. 

A speech-language pathologist can evaluate communication difficulties and provide strategies that can be adapted as the disease progresses. Speech-language professionals can also help address swallowing concerns.  

 Create a Safe Home Environment

Movement problems and involuntary movements can increase the risk of falls and other accidents.  

A physical or occupational therapist can help identify ways to make the home safer and recommend appropriate equipment or modifications.  

Depending on the person’s needs, helpful changes may include: 

• Removing loose rugs and clutter. 
• Keeping frequently used items within easy reach. 
• Improving lighting. 
• Installing grab bars where appropriate. 
• Using supportive seating. 
• Keeping walkways clear. 
• Considering mobility aids recommended by a professional. 

 Safety needs can change over time, so the home may need to be reassessed periodically. 

Pay Attention to Nutrition and Weight

Maintaining adequate nutrition can become challenging for people with Huntington’s disease. Some individuals have higher calorie needs, while involuntary movements, difficulty chewing or swallowing, and cognitive changes can make eating more difficult.  

Helpful strategies may include:  

• Offering smaller, more frequent meals. 
• Keeping nutritious snacks available. 
• Making meals enjoyable and relaxed. 
• Using adaptive utensils when necessary. 
• Providing foods with appropriate textures. 
• Monitoring changes in weight and appetite. 
• Working with a dietitian when nutritional needs become difficult to manage.

Some people with HD may require significantly more calories than expected, so unexplained weight loss should be discussed with the healthcare team. 

Take Swallowing Problems Seriously

Difficulty swallowing, known as dysphagia, is common in Huntington’s disease and can increase the risk of choking and other complications.  

Watch for signs such as: 

• Coughing or choking during meals 
• Difficulty chewing 
• Food remaining in the mouth 
• Changes in the person’s voice after eating or drinking 
• Taking unusually long to finish meals 
• Repeated respiratory problems 
• Unexplained weight loss 

If swallowing becomes difficult, ask a healthcare professional or speech-language pathologist for an assessment. Do not independently change food or liquid consistency without professional guidance. 

The appropriate food texture and swallowing strategies can vary from person to person.

Be Patient With Changes in Mood and Behavior

Huntington’s disease can affect mood, emotions, judgment, and behavior. Depression, anxiety, irritability, anger, and other behavioral changes may occur. 

When difficult behavior occurs, try to identify what might be contributing to it. 

For example, the person may be: 

• Tired 
• Overstimulated 
• Frustrated by difficulty communicating 
• Hungry 
• Experiencing pain or discomfort 
• Struggling with a task 
• Having difficulty processing too much information at once 

A calm environment and predictable routines may make some situations easier to manage. 

Behavioral changes should also be discussed with the person’s healthcare team, particularly when they are severe, sudden, or creating safety concerns.

Establish Predictable Routines

Changes in thinking and organization can make everyday tasks harder. 

A predictable routine can reduce the number of decisions a person has to make throughout the day. 

You could create a simple schedule for: 

• Waking and getting dressed 
• Meals 
• Medication 
• Exercise or therapy 
• Rest 
• Social activities 
• Bedtime 

Visual reminders, calendars, alarms, labels, and written instructions may also help.  

Keep instructions short and break complicated activities into smaller steps when needed. 

Encourage Appropriate Physical Activity

Movement difficulties do not necessarily mean that a person should stop being physically active. 

Exercise and physical therapy may help people maintain function and mobility. A physical therapist can recommend activities that are appropriate for the person’s abilities and safety needs.  

Activities may include walking, stretching, balance exercises, or other forms of movement recommended by a healthcare professional. 

 The type and intensity of activity should be individualized, particularly when balance or fall risks are present. 

Keep the Person Socially Connected 

Huntington’s disease can gradually change a person’s ability to work, drive, communicate, or participate in activities they once enjoyed. 

This can lead to isolation.  

Continue looking for ways to include the person in family and social activities. The activity may need to be adapted, but participation can remain meaningful. 

Consider: 

• Family meals 
• Short outings 
• Watching movies together 
• Listening to music 
• Art or creative activities 
• Visiting friends 
• Accessible community activities 
• Hobbies that can be modified for their abilities 

Focus on what the person can still enjoy rather than only on what the disease has taken away. 

Work With a Multidisciplinary Healthcare Team

Huntington’s disease can affect many areas of a person’s life, so one healthcare professional may not be able to address every need. 

Depending on the person’s symptoms, the care team may include: 

• Neurologists 
• Primary care providers 
• Nurses 
• Physical therapists 
• Occupational therapists 
• Speech-language pathologists 
• Dietitians 
• Psychologists or psychiatrists 
• Social workers 

These professionals can help address movement, communication, swallowing, nutrition, emotional health, daily activities, and long-term care needs.  

Keep a record of significant changes in symptoms, eating, sleep, mood, falls, medications, and other concerns. This information can make appointments more productive.

Plan Ahead for Future Care Needs

Because Huntington’s disease is progressive, care needs can change significantly over time. 

It can be helpful to discuss important decisions early, while the person can clearly express their preferences. 

Depending on the situation, discussions may include: 

• Future living arrangements 
• Healthcare preferences 
• Financial planning 
• Legal documents 
• Transportation 
• Long-term care 
• Who should help make decisions if the person eventually cannot do so independently 
• Preferences regarding feeding and other medical interventions 

These conversations can be difficult, but planning ahead can help ensure that the person’s wishes remain central to future care.

Remember the NDIS Support Worker

Supporting someone with Huntington’s disease can be physically and emotionally demanding. Support workers may gradually take on responsibilities that the person previously handled independently.

An NDIS support worker is a trained person who helps a participant in Australia’s National Disability Insurance Scheme (NDIS) live more independently and engage with their community. 

That makes an important part of the care plan, not an optional extra. 

Treat the Person as a Person, Not Just a Patient

Perhaps the most important way to help someone with Huntington’s disease is to remember that the disease does not define the whole person. 

Continue asking what they want. Give them choices. Respect their preferences. Include them in conversations about their care. Make room for humor, relationships, hobbies, and ordinary moments. 

Care should focus not only on managing symptoms but also on maintaining dignity, independence, meaningful relationships, and quality of life.  

When to Seek Professional Help 

Contact the person’s healthcare team when you notice significant changes in symptoms, eating, swallowing, mobility, mood, behavior, communication, or ability to perform daily activities. 

Contact the person’s NDIS provider, support coordinator, plan manager, or the NDIS through the appropriate channel if: 

• Current supports are no longer meeting the person’s needs.
• The person’s functional capacity has changed significantly.
• Equipment or home modifications are no longer suitable.
• There are concerns about the quality or safety of a support.
• The person needs help understanding or using their NDIS Plan.
• A plan review or change in circumstances may be required.

Seek urgent medical attention for emergencies such as severe choking, serious injury from a fall, difficulty breathing, or an immediate risk of harm to the person or others. 

Sudden or severe changes should not automatically be assumed to be part of Huntington’s disease; other medical problems can also cause changes and may require prompt evaluation. 

 Helping Someone with Huntington’s Disease 

Helping someone with Huntington’s disease is not about doing everything for them. It is about adapting support as their needs change while preserving as much independence, dignity, safety, and quality of life as possible. 

Learn about the disease, communicate patiently, create a safe environment, pay attention to nutrition and swallowing, encourage appropriate activity, and work closely with healthcare professionals. Just as importantly, remember to support the caregiver, too. 

With the right combination of medical care, practical adaptations, social support, and compassionate caregiving, families can help a person with Huntington’s disease continue to participate meaningfully in everyday life.  

Note: This article is for general educational purposes and is not a substitute for individualized medical advice. Huntington’s disease affects each person differently. Changes to diet, exercise, medications, swallowing strategies, or care arrangements should be discussed with the appropriate healthcare professional.