Families and Children: Living With Huntington’s Disease

Families and children: Huntington’s in more than one generation at once

Huntington’s disease does something no other illness does.

Lenni Duffield, chief executive of Huntington’s Australia, described it to the ABC in 2024: because the condition is hereditary, children sometimes care for parents before developing symptoms themselves, and parents sometimes care for partners and then children. She described feelings of loss, guilt, anger, burden and helplessness, and deepening isolation.

The Huntington’s Clinic at Royal Brisbane and Women’s Hospital put a number on part of it. Of the roughly 321 patients it had seen since 2017, about 10 per cent were themselves in a carer role. One in ten people attending a clinic for their own Huntington’s disease was also caring for somebody else with it.

That is the structural fact that makes HD families different. In cancer, in motor neurone disease, in dementia, there is a patient and there are carers, and the carers are well. In Huntington’s the carer is frequently at 50 per cent risk, or has tested positive and is waiting, or is already symptomatic. A woman in her fifties may be caring for a husband with advanced HD, watching an adult son develop early symptoms, and knowing her daughter has not been tested.

In the same ABC report, one woman with HD herself described watching her mother die, with everyone on her side of the family diagnosed. Another had a mother, a brother and numerous other relatives with the condition.

This guide is about that position: what the load consists of, what the particular griefs are, children and what to tell them, what practically helps, and what is owed to the people doing the caring.

What the load consists of

The physical care, which arrives later in HD than in some conditions but is substantial when it does: personal care, transfers, repositioning, mealtimes that take an hour, continence support, and nights. The gap analysis for Huntington’s Victoria recorded a carer who could not physically lift her husband and found it hard to know when he needed the toilet — the ordinary, unglamorous, unsolved problems of home care.

The behavioural load, which is the heaviest part. Irritability, accusations, perseveration, apathy, loss of filter, paranoid ideas about the person providing the care. This is what families name as the hardest thing, consistently and by a wide margin. See behaviour and mental health in Huntington’s.

The supervision. A person with impaired insight and impulsivity cannot safely be left, which is different from needing help. It means the carer cannot leave the house, cannot sleep properly, cannot work, and cannot plan anything. Supervision is the need least recognised by funding assessments and most limiting to a household.

The administration. NDIS applications, reassessments, equipment, appointments across neurology, psychiatry, neuropsychology, speech pathology, dietetics, OT, physiotherapy and behaviour support, Centrelink, insurance, superannuation, a solicitor, the licensing authority, the employer, and the retelling of the whole story to every new professional. The gap analysis found transitions a particular gap, because people had to retell their story each time.

The advocacy. Explaining to the police, to employers, to shopkeepers, to neighbours, that the person is not drunk. The gap analysis recorded a specific community request for help navigating police and security, and for being understood in public.

And their own risk, carried underneath all of it.

One practical detail from the same report, because it is the kind of thing nobody warns families about: a carer described a hand spasm pushing the car into neutral at highway speed, after which she could not transport her husband for about six months. Taxi vouchers helped. Transport in HD is a real and specific problem, and state taxi subsidy schemes are worth applying for early.

The griefs that are specific to Huntington’s

It arrived as a personality change. Most families date the start of HD not to a diagnosis but to a period, years earlier, when somebody became unreliable, short-tempered and hard to live with. By the time there is a diagnosis to explain it, a great deal has already been lost — jobs, friendships, the marriage, the children’s relationship with a parent. And the diagnosis reframes those years retrospectively, which brings its own grief: the realisation that the arguments were a symptom.

And then the guilt about having been angry. Universal, and undeserved. Nobody could reasonably have known, and the behaviour was genuinely hard to live with whatever caused it.

It is long. Fifteen to eighteen years from onset. That is not a crisis to be survived; it is a decade and a half of a life, during which children grow up, careers end, and the carer ages.

The person is still there. Insight is reduced but not absent, recognition of people is preserved, and emotional understanding is frequently painfully intact. You are not caring for somebody who has gone. You are caring for somebody who knows.

The inheritance. This is the one no other condition produces. Every symptom in the affected person is a preview, and a parent watching a child develop HD is watching something they transmitted. Guilt in that position is enormous and entirely undeserved — nobody chooses their genome — and it needs saying by a professional rather than only by relatives.

Multiple people at once. Two generations, sometimes three. Families where a parent, two siblings and a cousin are all affected. The ABC reported exactly this pattern in several Central West NSW families.

Nobody has heard of it. The gap analysis recorded that friends often “drop away” because they do not know how to manage HD, and that HD is frequently confused with motor neurone disease even by professionals. Every conversation begins with an explanation.

And the stigma, which is historical and still live. Huntington’s was concealed for generations. Families still conceal it. People still describe fearing that a diagnosis will affect their children’s marriage prospects, employment, or standing in a small community.

Children and young people

Children in HD families are in two positions at once: living with a parent who is becoming unwell, and carrying a 50 per cent risk themselves. Both need addressing and the second usually is not.

They know something is wrong. Long before anybody tells them, and they fill the gaps with worse explanations than the truth — commonly that it is their fault, or that the parent does not love them any more, or that they are about to lose both parents.

Explain it in terms they can follow, and go on explaining as they grow. One conversation is not enough; understanding gets rebuilt at each stage of development. Name the illness. Say it is a brain illness that makes movement, thinking and moods change. Say nobody caused it, it is not catching, and the behaviour is the illness rather than something the child did.

On the inheritance question, be honest when they ask, and they will ask. The outline is: it runs in families, each child of an affected parent has a 50 per cent chance, there is a test, the test is for adults at 18 or older, and nobody has to take it. Australian practice does not offer predictive testing in well children, for good reasons — a child cannot consent to that information, no treatment follows from it, and the right not to know belongs to them to exercise later. There is more on all of this in Huntington’s genetics and the 50 per cent.

Genetic counselling is available for the whole family, free, through state genetic services, and includes help with how to have this conversation. Parents routinely do not know this is available.

Tell the school, and tell them about behaviour specifically, so a child’s drop in performance or change in mood is understood rather than disciplined.

Watch for parentification. Young carers exist in HD households, frequently caring for a parent whose behaviour is difficult, and they need support rather than praise for coping. Carer Gateway supports young carers and there are state-based young carer programmes.

Protect something ordinary. Sport, friends, a club, a routine with nothing to do with illness. This matters more than almost anything else on this list.

And help the parent with HD leave something while they can. Letters, recordings, a video, something for a future birthday or wedding. People with HD frequently want to do this and do not know how to raise it, and the window is narrower than it looks because executive function and insight change early. This is among the most valuable things a family can do.

For the teenager or young adult at risk

A group that gets almost no attention and deserves its own section.

You do not have to decide anything now. Testing is available from 18 and there is no deadline. Plenty of people live full lives at 50 per cent risk without testing, and that is a legitimate position rather than avoidance.

The insurance situation changed. Since 8 October 2026 Australian life insurers cannot solicit or use adverse genetic test results in underwriting death, TPD, trauma or income protection cover. Family history can still be used, so the protection is specific, but the old trap — where finding out destroyed your insurability — no longer exists in Australian law. If you are weighing testing, this is new information. See predictive testing for Huntington’s.

Genetic counselling is free and does not commit you to anything. You can have the appointment, ask every question, and leave without testing. A great many people do.

Reproductive options exist and most people do not know about them — preimplantation genetic testing, exclusion testing that allows embryo selection without revealing your own status, prenatal diagnosis, donor gametes. That appointment is worth having before a pregnancy rather than during one.

Watching your own body for symptoms is normal and exhausting. Nearly everybody at risk does it, interpreting every dropped glass and bad mood. It is one of the commoner reasons people eventually test.

And find other people in the same position. Huntington’s Australia on 1800 244 735 runs and connects peer support, and the one thing peers offer that nobody else can is not having to explain.

What actually reduces the load

In rough order of impact.

Ring Huntington’s Australia on 1800 244 735. They coordinate support nationally, know what exists in your state, and run peer programmes. First call.

Sign up with Carer Gateway, on 1800 422 737. Free, national, and most carers have never heard of it: counselling, coaching, peer support, respite, emergency respite, and in some cases financial help for practical support. Independent of the person’s own funding.

Get a specialist HD service involved, even interstate. General neurology, general psychiatry and general disability services will each manage their third of the problem competently without anybody managing the whole.

Get support coordination funded, and treat it as the point of the plan. See Huntington’s disease and the NDIS.

Get behaviour support that is designed for HD, which reduces the behavioural load more than any other single intervention.

Treat the depression — the person’s, and your own. In HD this is frequently the highest-value clinical intervention available.

Get respite before you need it. The gap analysis recorded a participant saying there was no safe place for time out or respite care, and respite remains the clearest gap in Australian HD support. Build it into the plan from the start.

Claim everything. Carer Payment and Carer Allowance through Services Australia; Disability Support Pension for the person. The NDIS is not income — it funds supports and pays nothing to live on.

Check insurance and superannuation, including terminal illness and total and permanent disablement provisions, before anybody resigns from anything.

Apply for the state taxi subsidy scheme and a disability parking permit early.

Make one document and reuse it. A two-page summary — diagnosis, CAG repeat, dates, current function across motor, cognitive and psychiatric domains, medications, who is involved, what support is in place — sent ahead of every appointment. This directly addresses the retelling problem.

Keep one folder with every report. You will need them repeatedly.

Delegate specific jobs to specific people. Relatives are useless at “let me know if you need anything” and good at “can you take Tuesday nights” or “can you handle the Centrelink claim.”

Find peers. In Central West NSW, families built their own peer support group because nothing existed; the gap analysis found peer support most valued at specific moments — when first aware of HD, during genetic testing, at key decision points, when choosing supports, and when receiving bad news.

For the carer, specifically

Your own health is part of the care plan. If the carer hurts their back or burns out, the whole arrangement stops.

Learn the transfers properly, from a physiotherapist or OT, and again when equipment changes.

Get your own GP, and your own psychologist. Separately from the person you care for. The gap analysis and the ABC reporting both found counselling access a national problem and worst in regional areas, with private psychologists expensive and frequently unfamiliar with HD — so ask Huntington’s Australia who understands the condition in your area, and ask about telehealth.

Say the resentment out loud somewhere. It is universal and it damages only when it has nowhere to go.

Protect one thing that is yours.

Deal with your own genetic question on your own timeline, not when a crisis forces it.

Plan for after. Carers in HD families frequently describe a collapse once it ends — the structure, purpose and routine all disappearing at once — and in HD it may not end, because another family member is coming. Bereavement and ongoing support exist through palliative care services, Carer Gateway and Huntington’s Australia.

And allow somebody to tell you it was enough. Nobody does fifteen years of this well. Everybody loses their temper, resents it, and wishes they had been more patient. The bar is that you stayed.