Practical ways to support meals, communication, movement and everyday choices, without taking over someone’s life.
Original article: Michaela Crutsinger, OTD. Original HDYO editor: K. M. Knewstep-Watkins, OTD, OTR/L. Editorial revision: Brendan McDonald. Originally published by URevolution September 3, 2022. Updated September 30, 2026. This expanded edition has been checked against the sources below; it has not received a new clinical review from the original contributors.
How can you help someone with Huntington’s disease?
Ask what help they want, make everyday tasks easier, and keep them involved in decisions. Allow more time for conversation and activities. Work with their care team on swallowing, falls, mood changes and driving safety, and arrange reliable support for the people providing care.
You might begin with something ordinary: taking over the washing-up, organizing a ride, or sitting quietly while someone finishes a sentence. Helpful support leaves room for the person’s preferences. Finishing a task quickly is rarely more important than letting them participate.
Huntington’s disease (HD) is an inherited condition that progressively affects the brain. It can change movement, thinking and mental health. The combination of symptoms differs between people, so care needs to respond to the individual rather than a fixed timetable. [1]
This guide is for adult family members, friends and other supporters. It offers ways to work alongside professional care, not instructions for changing medication or prescribing a swallowing plan.
Start with the person and their care team
Ask: “Which part of today is getting difficult?” That gives you a better starting point than deciding what someone ought to need. Agree when help is welcome, what they prefer to do themselves, and who they want involved in appointments.
Keep ordinary interests in the conversation. A visit can still involve a favorite film, a family argument about football, or news from a friend. Every conversation does not have to become a symptom report.
HD care often involves several professions. A 2023 European Huntington’s Disease Network position paper supports coordinated care across disciplines and identifies a care coordinator as a useful point of contact. It is an expert position paper, not proof that every intervention works equally well for everyone. [2]
| What is changing? | Who can help? |
|---|---|
| Medication effects, movement or mood | The HD clinician or neurologist, with mental-health support when needed |
| Dressing, bathing, cooking or the home environment | An occupational therapist (OT) |
| Walking, balance or getting between a bed and chair | A physical therapist (PT), working with an OT where appropriate |
| Speech, communication or swallowing | A speech-language pathologist (SLP) |
| Weight loss or difficulty meeting nutritional needs | A registered dietitian, alongside the swallowing team |
| Care arrangements, respite or finding services | A social worker or care coordinator |
In the United States, HDSA Centers of Excellence bring together professionals with HD experience. Ask about referral requirements, costs and options for coordinating with local services if travel is difficult.
Early-stage Huntington’s disease: make routines easier
“Early,” “middle” and “late” are broad descriptions of support needs. Someone may need considerable help with one activity and little help with another. These everyday descriptions are different from the HD Integrated Staging System used in research.
Eating and preparing meals
Offer to do the parts of meal preparation that take the most effort. You might shop from a shared list, prepare ingredients, or leave a familiar meal ready to heat. Keep the person’s preferences involved.
Reduce distractions when meals become difficult. An OT can assess whether a different handle, plate guard or non-slip surface makes eating easier; heavier utensils are not automatically better. Choose equipment around the person’s abilities and comfort. [Original care guidance]
Some people with HD need more calories, but “double portions for everyone” is not a care plan. If weight is falling, ask for a dietitian’s assessment. Appetite, swallowing, movement and other health conditions can all affect what is appropriate. [3]
Getting dressed
Give the person time to choose their clothes. Sitting to dress, using easier fastenings or setting clothing out in order may reduce effort. Ask an OT about specific difficulties rather than replacing the person’s wardrobe on their behalf. Our explanation of adaptive clothing describes ways garments can accommodate different access needs.
Using the bathroom
Talk discreetly about rushing, near-falls or difficulty managing clothing. Report new bladder or bowel problems to the care team rather than assuming they are simply part of HD. An OT can assess the bathroom layout and whether equipment or changes to the routine would help. Preserve privacy wherever possible.
Driving
A diagnosis alone does not tell you whether someone can drive safely. Changes in attention, judgment, vision-related processing and movement can affect driving. Raise concerns with the treating clinician and ask about a specialist driving assessment. Choosing quieter roads cannot compensate for unsafe driving. [Original care guidance]
Use specific observations, such as a near collision, rather than accusations. If there is an immediate safety concern, arrange another way to travel while seeking prompt advice. Start planning transport before the car becomes the subject of a crisis.
Walking and enjoyable activity
Ask what the person wants to keep doing and discuss adaptations with their PT. That might mean changing the route or pace of a walk, making room for rests, or trying a different activity. Report falls and near-falls. A therapist should assess and teach the use of walking aids; buying poles or a walker without assessment may create new problems. [Original care guidance]
Home safety
Walk through the home together. Look for cluttered routes, loose rugs, poor lighting and tasks that have become awkward. Ask for an OT home assessment before choosing major adaptations or equipment. Changes should make the home usable while preserving familiar spaces and access to valued activities.
Thinking, planning and remembering
Try one instruction at a time, a consistent place for essential items, and a routine with enough time between tasks. Written or visual reminders can help some people; check whether they are actually useful to this person. A reminder that works for you may be another distraction for them. [Original care guidance]
Middle-stage Huntington’s disease: adapt support as needs change
Eating, drinking and swallowing
Do not wait for late-stage HD to ask about swallowing. In a 2025 study of 87 people with the HD gene expansion, swallowing questionnaire scores generally worsened across research stages, with some difficulties reported early. The study supports earlier attention to swallowing; it did not test a treatment or establish an individual’s safe diet. [4]
Tell the care team about coughing during meals, food remaining in the mouth, a wet-sounding voice, unusually long meals, or unexplained weight loss. These signs need assessment. Their absence does not prove swallowing is safe. [5]
A separate 2025 study examined swallow imaging in 40 adults with HD referred for testing. Eleven aspirated, meaning material entered the airway below the vocal folds; nine of those did so silently. This was a small, selected clinical group, not a prevalence estimate for everyone with HD. It helps explain why watching for coughing alone is insufficient. [6]
An SLP can assess swallowing and recommend whether instrumental testing is needed. Ask for a written plan covering food texture, drinks, positioning, assistance and what to do if difficulties arise. Follow that person’s plan. Do not introduce thickener, a straw, a swallowing exercise or a new feeding technique just because it helped someone else. Thickened drinks do not eliminate aspiration risk and may affect hydration. [5]
Make eating as calm and unhurried as possible. Let the person do the parts they can manage within the agreed plan. Ask for reassessment when abilities or symptoms change.
Driving and transportation
If driving stops, replace the journeys as well as the car keys. Appointments are only part of the picture. Ask how the person will see friends, shop, or get somewhere without negotiating a favor each time. Offer a regular ride you can reliably provide.
Balance, mobility and transfers
Ask the PT or OT to demonstrate how to help with a specific transfer, such as getting out of a chair. Have everyone who provides that assistance trained. If a transfer is becoming unsafe, ask for reassessment and suitable equipment rather than trying to lift more forcefully. [Original care guidance]
Communication and thinking
Speak directly to the person, reduce background noise, and allow a pause for their answer. Resist finishing every sentence. If you do not understand, say so gently and check what they mean rather than pretending.
The SLP can help identify communication methods that fit current abilities, including gestures, pictures, writing or a device. A sophisticated app is only useful if the person can comfortably access it. Reassess as movement and thinking change. [7]
For the emotional side of these conversations, our guide to being emotionally supportive offers ways to listen and make practical offers without taking control.
Respond to mood changes, apathy and distress
HD can affect motivation, mood and behavior. Difficulty starting a task may reflect apathy rather than a refusal to cooperate. Depression also needs attention. Describe changes to the clinician so the team can consider symptoms, medication effects and other causes. [8]
When someone becomes upset, lower the demands of the moment. Reduce noise, give them space, and return to a difficult task later if it is safe to do so. Notice whether the same situations keep causing distress. Keep a brief record of what happened beforehand and what helped; it may make the next clinical conversation more useful.
Sudden confusion or a marked change in behavior deserves prompt medical advice. Pain, infection or another treatable problem may be involved; do not automatically label it disease progression. [8]
Understanding a symptom does not mean someone providing care must remain in danger. Move to safety if threatened and seek urgent help when needed. If the person talks about suicide, take it seriously. In the United States, call or text 988 for crisis support; call 911 for immediate danger or a medical emergency. [9]
Later-stage Huntington’s disease: comfort, connection and choices
Eating and decisions about feeding tubes
Revisit nutrition and swallowing with the team as needs change. A feeding tube may be discussed when eating and drinking no longer meet a person’s needs, but it is an individual decision. Ask about likely benefits, burdens, care requirements and the person’s wishes. Have the conversation before an emergency where possible. International HD guidance recommends discussing gastrostomy on a case-by-case basis. [8]
Staying at home or moving to another care setting
Ask what support is needed across a full day and night, who can provide it, and what happens when the main caregiver is ill. A social worker can help explore home care, respite and residential options. Needing more support is a reason to change the arrangement, not a verdict on how much the family cares.
Discuss future care preferences while the person can express them, with communication support where needed. Ask about palliative care for symptom relief and help with difficult decisions; it can be part of a wider care plan. [2]
Mobility and physical comfort
Follow the team’s instructions for positioning and transfers. Anyone operating a lift needs training in the actual equipment and the person’s care plan. Ask the nursing and therapy team about comfort, seating and skin care as mobility becomes more limited. [Original care guidance]
Keeping the home workable
Review whether the current space still supports safe care. Equipment needs room to be used properly. Keep familiar objects within reach where safe and ask the OT to reassess the environment when routines or equipment change.
Communication when speech becomes difficult
Limited speech does not tell you everything about understanding. Cognitive difficulties can also become substantial. Keep addressing the person respectfully, explain what you are doing, and ask the SLP how to recognize and support their remaining ways of communicating.
A simple choice between two objects may be more accessible than a long question. Familiar company and enjoyable activities still matter, even when a conversation is no longer possible. Avoid promising relatives that recognition or understanding will always remain unchanged. [7]
Make support for caregivers part of the plan
If you are a friend or relative outside the main care arrangement, offer something specific: “I can collect groceries on Tuesdays,” or “I can take you to the support group.” Only offer direct care you are trained and able to provide.
Ask the care coordinator about respite, counseling and local support groups. Write down a backup plan with essential contacts and the current care instructions. Whoever steps in should know whom to call and what assistance they are qualified to give.
Children and young adults in an HD family need support of their own. They may be worried about a parent and their own future at the same time. Do not make a young relative the default adult caregiver. HDYO provides information and support specifically for young people affected by HD.
When should you get medical help?
Agree a contact plan with the person’s team. These examples help separate routine planning from situations that should not wait; follow any more specific instructions already provided.
| Situation | Action |
|---|---|
| Choking with inability to breathe, speak or cough effectively; severe breathing difficulty; unconsciousness | Call 911 in the United States. Follow the dispatcher’s instructions. Ask the care team about recognized choking first-aid training before an emergency happens. |
| Immediate danger of suicide, serious self-harm or violence | Call 911. For crisis support without immediate physical danger, call or text 988. |
| Sudden confusion, rapid deterioration, new fever or breathing symptoms | Seek urgent medical advice; use emergency services if symptoms are severe. |
| New swallowing concerns, reduced intake, weight loss, repeated falls or worsening mood | Contact the care team promptly rather than waiting for the next routine appointment. |
Swallowing guidance: ASHA [5]. HD symptom assessment: international guidelines [8]. Emergency and crisis support: 988 Lifeline [9] and MedlinePlus choking first aid.
Questions families often ask
What should I avoid saying?
Avoid “You just need to try harder” or promises that a positive attitude will stop the disease. If help is declined, ask what would make it more acceptable. Offer a smaller task or a different time, while involving the team when there is a safety concern.
Can someone with Huntington’s disease live independently?
Some people manage many activities independently, particularly earlier in the condition. Others need support sooner. Decisions should reflect actual abilities, safety and available help. An OT assessment can identify practical changes; the diagnosis alone cannot determine the right living arrangement. [Original care guidance]
Do new treatments mean daily support is less important?
No. Symptom treatment, rehabilitation and everyday support remain central to care. HDSA’s research pipeline includes experimental approaches intended to change the disease course, but a trial announcement is not an approved treatment or a guarantee of benefit. Ask the HD specialist about research options and continue the agreed care plan. Check HDSA’s treatment research information.
What is one useful thing I can do this week?
Ask which recurring task is hardest, agree one part you can take on, and follow through. Reliable help usually matters more than an ambitious offer that disappears after the first week.
Sources and original article credit
The revision draws on specialist guidance and peer-reviewed research. The 2025 swallowing studies are observational; they support assessment, not a universal diet or exercise prescription. Older guidance is identified by its actual date.
- MedlinePlus: Huntington disease. Background on symptoms, care and progression.
- Mühlbäck et al. (2023). What we don’t need to prove but need to do in multidisciplinary treatment and care in Huntington’s disease. Orphanet Journal of Rare Diseases, 18:19.
- Huntington’s Disease Society of America: Nutrition. Individual nutritional needs and specialist support.
- Kaur et al. (2025). Dysphagia in Huntington’s Disease: An Evaluation of Swallowing Disturbance across the HD-ISS Staging Spectrum. Movement Disorders Clinical Practice, 12:2296–2303.
- American Speech-Language-Hearing Association: Adult Dysphagia. Assessment, silent aspiration and individualized management.
- Raines, Clark and Donohue (2025). Profiling Swallowing Safety and Physiology in People With Huntington’s Disease. Neurogastroenterology & Motility, 37:e70035.
- Huntington’s Disease Association: Behaviour and communication. Communication guidance; UK-specific legal provisions are not applied in this US-focused guide.
- Bachoud-Lévi et al. (2019). International Guidelines for the Treatment of Huntington’s Disease. Frontiers in Neurology, 10:710.
- 988 Suicide & Crisis Lifeline: Contact and immediate-help guidance. United States.
Original care guidance: Adapted from Top Tips for Helping a Person with HD, written by Michaela Crutsinger (credited as OTDS in the original), edited by K. M. Knewstep-Watkins, OTD, OTR/L, and published by the Huntington’s Disease Youth Organization. URevolution’s revision rewrites and expands the guidance, adds medical sources and updates safety information. The original contributors have not been represented as approving this edition.
The adapted article text is offered under the Creative Commons Attribution–NonCommercial–ShareAlike 3.0 license, subject to the original rights. Photographs, brand assets and other separately credited material are excluded. See HDYO’s reuse terms.
