Huntington's disease at home: the changes, the family, and planning ahead

The NHS describes Huntington's disease as an inherited condition that affects movement, thinking and mood. If one parent carries the altered gene, each of their children has a 1 in 2 chance of inheriting it. The changes come on gradually, and over time the person needs more help with daily life. There are medicines and therapies that help with some of the symptoms, which is one reason to keep the specialist team involved from the start.

Because it is inherited, the diagnosis is rarely about one person. Brothers, sisters, children and grandchildren may be affected or at risk, and a family may already have cared for a parent or grandparent with the same condition. The NHS explains that a genetic test can show whether somebody carries the altered gene, and a genetic counsellor can talk it through first. This page is about caring for the person who has symptoms now, and looking after the rest of the family too.

There is no NICE guideline written for Huntington's disease. The HDA reported in 2023 that NICE would not prioritise one, and its list of national guidance points to general NICE guidelines instead, such as those on nutrition support, on supporting adult carers and on decision-making and mental capacity. For practical information written for this condition, the Huntington's Disease Association is the national charity for England and Wales, and the NHS points families to it. Complex care at home explains how care for conditions like this one is put together, and motor neurone disease care at home covers another neurological condition where arranging help early matters.

The movement changes are the ones visitors notice. The changes in thinking are slower to show, because a person can still hold a conversation while finding it hard to plan a day, follow a letter or start a job they know how to do. The HDA's guide for social workers says a person may not respond to calls, letters or visits because the illness affects their ability to plan and start things, and that this should not be taken as a refusal.

The emotional and behavioural changes can be the hardest part for a family, and the charity says so in plain terms. On its page explaining what Huntington's disease is, the HDA writes that the psychological and emotional sides of living with the disease are sometimes more of a problem than the physical side. Its page for carers says most carers will notice behaviour changes in the person they care for, and that this can be difficult for the person and for the people around them. Hearing unkind words from a parent or partner is painful, and it can be hard to know how much comes from the person and how much from the illness.

Two points from the HDA's guides help here. The first is that a person may accept they have the diagnosis without accepting that they are showing symptoms, and that trying to make them see it tends to make things harder. It is usually more useful to deal with the problem in front of you, such as an unpaid bill, than to argue about the cause. The second is what the HDA calls the Huntington's disguise: weaker facial muscles can make somebody look bored or unfriendly when they are not, and a raised voice or a sudden movement can look like anger when it is a problem of control. Tell a new carer both things on their first day.

Eating and swallowingSection titled Eating%20and%20swallowing

Mealtimes can become slow and tiring, and the HDA's guide for GPs describes how people with the condition may eat too fast, overfill their mouth or forget to chew, which raises the risk of choking. That is why eating may need to be supervised, and why the speech and language therapist and the dietitian are worth asking for before there is a crisis. The GP can refer to both.

When a therapist advises softer food or thickened drinks, the textures are described using a shared international scale called IDDSI. Our guide to dysphagia diets explains the levels and what each one looks like on a plate. The HDA's guide also says the question of a feeding tube should be talked through with the person and the family before swallowing becomes severe, and that the person may have an advance decision about it which must be followed. If a tube is placed, PEG feeding at home sets out what the family, the nurses and a trained carer each do, and delegated healthcare tasks explains why a carer may only give a tube feed after a nurse has trained them and signed them off for your relative.

Falls and the houseSection titled Falls%20and%20the%20house

The HDA's guide for GPs says falls are common and are more likely in the moderate and later stages, and that preventing them is mostly about changing the house and how the person moves around it rather than medicine. An occupational therapist can advise on rails, seating and bathroom changes, and a physiotherapist on sitting, standing and walking more safely. Ask the council for a care needs assessment too, which is free and brings its own occupational therapist; how to ask for one explains the route, and the right equipment to aid somebody at home covers what to ask about.

Talking and being understoodSection titled Talking%20and%20being%20understood

The HDA's page on behaviour and communication says people with Huntington's disease can become frustrated when they are not understood or not given enough time to answer, and recommends early speech and language therapy and using every way of communicating that works for the person. A pad, pictures or a word board kept to hand can help on harder days.

Care is usually led by a neurologist or a specialist Huntington's disease service, with physiotherapists, occupational therapists, speech and language therapists and a genetic counsellor involved as needed. The HDA's Specialist Huntington's Disease Advisory Service is separate from the NHS. It covers England and Wales, and you can find the adviser for your area through the HDA's specialist advisory service page.

1. 1

   Ask for the right referrals

   Through the GP or the specialist team

   A specialist Huntington's service or neurologist, a speech and language therapist, a dietitian, an occupational therapist and a physiotherapist. Ask the GP which specialist service covers your area if you are not already seen by one.
2. 2

   Get in touch with an HDA specialist adviser

   For the family as well as the person

   The HDA's guide for GPs suggests the local specialist adviser as a source of information about services in your area. Their details are on the HDA website.
3. 3

   Make a lasting power of attorney

   While your relative has capacity

   There are two kinds, one for health and welfare and one for property and financial affairs. GOV.UK says a person must have mental capacity when they make one, and it must be registered with the Office of the Public Guardian before it can be used.
4. 4

   Talk about wishes and advance decisions

   Before they are needed

   The HDA encourages families to think about an advance care plan, a lasting power of attorney and an advance decision to refuse treatment. A GP or the specialist team can help with the conversation.

The reason for doing this early is simple. The changes in thinking can make decisions harder over time, and a lasting power of attorney cannot be made once somebody has lost the capacity to make it. Without one, a family member may have to apply to the Court of Protection to become a deputy before they can make some decisions on their relative's behalf. Lasting power of attorney and dementia explains the same timing problem in a condition where it comes up often, and GOV.UK sets out how to make one.

An advance decision to refuse treatment lets your relative say now which treatments they would not want in future, if they can no longer decide. The NHS explains what an advance decision is and what makes it valid, and our guide to advance decisions covers how it differs from an advance statement of wishes. PrimeCarers does not give legal advice, so for anything beyond the standard forms, speak to a solicitor.

The HDA's guide for social workers also suggests beginning with whatever your relative will accept. If they will let somebody help with cleaning but not with washing, start with the cleaning. Even when somebody is physically able to do a task, the guide says they may still need a lot of prompting and someone keeping an eye on it. The same carer coming regularly becomes part of the routine, which can make later help easier to accept.

When care is needed day and night, one live-in carer cannot cover it all, because they need their sleep and their breaks. 24-hour complex care teams explains the shapes a round-the-clock arrangement can take and what each one costs, and the cost of live-in care compares live-in care with visits and a care home.

If your family needs someone steady and patient in the house as needs grow, you can search for carers near you and compare their rates, then ask each one about their experience with neurological conditions. Carers describe on their profile the conditions they have worked with, and that is their own account. PrimeCarers checks each carer's identity and right to work, an accepted criminal-record check (Enhanced DBS issued within the last 18 months, DBS Update Service, Scottish PVG or Access NI), and holds an online interview before their profile appears. We do not check qualifications, training or references, so ask about them yourself. Separately, every visit booked through PrimeCarers is insured, by the carer's own policy or by cover PrimeCarers arranges where they do not hold one.

NHS Continuing HealthcareSection titled NHS%20Continuing%20Healthcare

NHS Continuing Healthcare is care arranged and funded by the NHS for people with long-term complex health needs. The NHS says it is not means tested, and that eligibility depends on assessed needs rather than a diagnosis, so Huntington's disease does not qualify anybody on its own. The assessment looks at areas such as nutrition, mobility, communication and behaviour, which is where this condition tends to show. It starts with a checklist that a nurse, doctor, other health professional or social worker can complete, and you can ask for one. If your relative is not eligible, the council's care needs assessment is the next route; savings over £23,250 in England mean paying in full.

The HDA's guide for GPs points out that somebody caring for a parent with the condition may be at risk themselves, and that children in the family face changes in their parent and at home that they will not always understand.

For young people, the NHS explains a young carer's rights, and the HDA has pages for children and young people in families affected by the condition. For adults, the free help available to carers sets out the assessment, Carer's Allowance and the other support you can ask for, and planning respite for the first time covers arranging a break. The HDA also lists support groups and an online message board for carers on its page for carers.

If you care for a relative with Huntington's disease while carrying worries of your own about it, tell your own GP how things are for you. You are entitled to support in your own right, separate from the help your relative gets.