Sparrow Neuropsychology · Vancouver

Huntington's Disease Resources

Organisations, information, and support for people affected by Huntington's disease in BC, Canada

These resources are oriented towards people affected by Huntington’s disease in British Columbia, Canada. This page brings together high-quality information, services, and support for people living with HD and for the families who share their lives. It is intended as a starting point — not a substitute for advice from your own medical team.

Huntington’s disease (HD) is a hereditary, progressive neurological condition caused by a mutation in the HTT gene — a longer-than-normal sequence of DNA (known as a CAG repeat expansion) that causes progressive damage to specific brain circuits. HD is rare, affecting approximately 1 in 10,000 people, with around 4,500 Canadians currently living with it. Huntington’s is often called a “family disease” because, unlike most neurological conditions, it follows a clear and predictable pattern of inheritance: a person who inherits the HD gene mutation has a 100% chance of developing the condition, and each of their children has a 50% chance of inheriting it.

HD is unlike many other neurological conditions in that it affects movement, cognition, and mood in equal measure — all three are core features of the illness, not secondary complications. Motor symptoms — particularly chorea, the involuntary writhing movements most associated with HD in the public imagination — are often the most visible aspect. But for many people, cognitive changes and psychiatric symptoms are at least as significant, and often appear first.

The gene responsible for HD was identified in 1993, making predictive genetic testing possible for the first time. This was a profound development for HD families: for the first time, at-risk individuals could know for certain whether they had inherited the mutation — years or decades before any symptoms appeared. This possibility brings with it a set of deeply personal decisions and emotional challenges that have no real parallel in other neurological conditions.

What a neuropsychological assessment can offer

Huntington’s disease affects cognition in ways that are both distinct in character and significant in their impact on daily life. A neuropsychological assessment provides a detailed, objective picture of cognitive functioning that a brief clinical screen cannot — and offers specific value at multiple stages of the HD journey.

An assessment can:

  • Establish a cognitive baseline in pre-manifest HD — people who have tested positive for the HD mutation but have not yet developed significant symptoms benefit greatly from an early baseline assessment; only by measuring cognitive function before symptoms emerge is it possible to detect meaningful change over time
  • Detect early cognitive changes — executive function, processing speed, and working memory are typically the first cognitive domains to decline in HD; sensitive neuropsychological testing can identify changes that may not yet be apparent in day-to-day life
  • Characterise the pattern of cognitive change — the HD cognitive profile is distinct from that of Alzheimer’s disease and other dementias; formal assessment helps clarify what is being affected, by how much, and what this means practically
  • Disentangle cognitive difficulties from mood and medication effects — depression, anxiety, and apathy are all common in HD and can themselves impair concentration and memory; an assessment helps determine what is driving cognitive difficulties, which matters for treatment decisions
  • Evaluate capacity — as HD progresses, questions may arise about a person’s ability to make specific decisions — medical, financial, or legal; a neuropsychologist can conduct a formal capacity assessment at a particular point in time
  • Support decisions about work and driving — cognitive assessment provides objective information for workplace accommodation discussions and for occupational therapists conducting on-road driving evaluations; in BC, doctors are required to report conditions affecting driving to ICBC
  • Assist with disability and legal matters — neuropsychological assessment provides documented, professionally validated evidence of cognitive functioning, which is often required for disability applications, early retirement, or legal proceedings
  • Support care planning and family conversations — understanding what cognitive changes are occurring — and what to expect — helps people with HD and their families make informed decisions about future care and support needs

Your GP, neurologist, or genetics counsellor can refer you for a neuropsychological assessment. You can also contact us directly.

Understanding Huntington’s disease — the biology

  • What is Huntington’s disease? — The Huntington Society of Canada’s overview of what HD is, what causes it, and how it progresses. The Huntington Society of Canada is the country’s national HD organisation.
  • What does HD look like across the stages? — The Huntington’s Disease Society of America (HDSA) guide to how HD changes over time, from early through mid and late stages — covering motor, cognitive, and psychiatric features at each stage.
  • What is the genetic basis of Huntington’s disease? — Huntington’s Disease Youth Organisation (HDYO) explanation of the HD gene mutation — the CAG repeat expansion, what it means biologically, and how it is inherited. Written in clear, accessible language.
  • What is the science behind Huntington’s research? — Enroll-HD’s overview of the biology of HD and the science being pursued to understand and treat it, written for people affected by HD.
  • What is HDBuzz? — HDBuzz is a highly regarded, scientist-authored news site that translates the latest Huntington’s disease research into plain English. It is written by HD researchers for HD families and is one of the most trusted sources of HD research updates available.

Cognitive changes in Huntington’s disease

Cognitive changes in HD are among its most consistently present and most functionally significant features. Unlike Alzheimer’s disease, which typically begins with prominent memory loss, HD produces a cognitive profile that reflects disruption to the frontal lobes and the circuits connecting them to deeper brain structures — areas that govern the regulation and coordination of thinking and behaviour rather than the storage of memories per se.

The pattern of cognitive change in HD is sometimes described as a subcortical dementia: it is characterised not by forgetting as such, but by slowing, difficulty organising, reduced mental flexibility, and problems with retrieval — getting information out of memory rather than the inability to store it in the first place. This distinction matters practically: a person with early HD may be able to recall something if given enough time or a cue, where someone with Alzheimer’s disease may have no stored memory to retrieve.

Common cognitive changes in HD include:

  • Processing speed — thinking and responding more slowly than before, often one of the earliest noticeable changes; tasks that once felt automatic begin to require more effort and time
  • Executive function — difficulty with planning, organising, multi-tasking, and thinking flexibly; problems switching between tasks or keeping track of multiple things at once
  • Working memory — difficulty holding information in mind while using it; following complex conversations, keeping track of a sequence of steps, or remembering what was just said become harder
  • Attention — difficulty sustaining concentration, particularly in busy or demanding environments; increased distractibility
  • Retrieval — difficulty accessing information on demand; a sense that words or facts are “on the tip of the tongue” but not available; memory for events is often preserved but retrieval can be slow or effortful
  • Visuospatial function — difficulties with spatial reasoning and visual processing, which can affect driving and navigation
  • Awareness — reduced insight into one’s own cognitive or behavioural changes is common in HD, and can complicate both relationships and healthcare conversations

In people who have the HD gene mutation but have not yet developed motor symptoms (pre-manifest HD), subtle cognitive changes — particularly in processing speed and executive function — can be detected with sensitive neuropsychological testing years before clinical diagnosis. This makes formal assessment particularly valuable for those who have received a predictive positive result.

If there are concerns about cognitive changes in Huntington’s disease — whether for diagnosis, baseline monitoring, or care planning — a neuropsychological assessment can provide objective, detailed information. Please contact us or submit a referral.

Psychological adjustment to Huntington’s disease

HD presents psychological challenges that are in some respects unique among neurological conditions. The demands it places on emotional adjustment extend well beyond those of most chronic illnesses, and extend to family members as much as to the individual with HD.

Depression is among the most common features of HD — affecting around 30–40% of people — and, importantly, it often precedes motor symptoms by years. Depression in HD has a neurological basis: the same striatal and limbic circuits disrupted by HD are involved in regulating mood and motivation. This means depression is not simply a psychological reaction to a difficult diagnosis, but a biological feature of the condition itself. It is often under-recognised and under-treated, yet it is one of the most responsive symptoms in HD.

Anxiety is equally common and can manifest as generalised worry, panic, or situation-specific fear — including anxiety about symptoms, about the future, or about the disease’s impact on family. Like depression, anxiety in HD has neurological as well as psychological components.

Irritability and aggression are among the most commonly reported psychiatric symptoms in HD and can cause significant distress for both the person with HD and their family. They reflect changes in the brain’s circuits for emotional regulation rather than changes in personality or character — a distinction that is important to hold onto, even when it is difficult in practice.

Apathy — reduced motivation, initiative, and emotional engagement — occurs in a substantial proportion of people with HD and is often confused with depression. It is not the same as low mood: a person with apathy may not feel sad, but may have lost the drive to engage with activities they still value. Apathy is particularly hard for families to understand and respond to.

Obsessive-compulsive symptoms — including rigid thinking, repetitive behaviours, and difficulty with change or uncertainty — occur in some people with HD and reflect disruption to frontal-subcortical circuits.

Grief and anticipatory loss are present for many people affected by HD, both those with the condition and those caring for them. The losses involved in HD — of roles, of independence, of the future that was planned — accumulate over time and deserve acknowledgement and support.

Genetic testing and at-risk individuals

Huntington’s disease is unusual among neurological conditions in that genetic testing can tell a person — with certainty — whether they carry the HD mutation, decades before any symptoms appear. This possibility raises some of the most profound personal and ethical questions that any neurological condition involves.

A person with a parent who has HD has a 50% chance of having inherited the mutation. Whether to undergo predictive genetic testing is entirely a personal decision, and both choices — testing and not testing — are valid. Some people find that knowing their genetic status gives them a sense of control and allows them to make decisions about their lives and futures with clear information. Others find that they manage better with uncertainty, and prefer not to have a definitive answer. There is no right answer, and no pressure to test.

If predictive testing is being considered, it should always be undertaken through a genetic counselling service that follows the international guidelines for HD predictive testing — which include multiple counselling appointments before and after the result, and careful attention to psychological readiness and support. Testing should not be done impulsively, and a positive result should never come as a surprise without support in place.

The Huntington Society of Canada operates a genetic counselling and support infrastructure specifically for HD families. Before and after testing — and for those who decide not to test — psychological support is available.

Impact on partners and families

Huntington’s disease affects every member of the family in profound and lasting ways. The genetic nature of HD means that when one person in a family is diagnosed, others face the realisation that they too are at risk. This creates a family dynamic with no real parallel in other chronic conditions: children, siblings, and parents of someone with HD may themselves carry the gene — and may have to make decisions about whether to find out.

Partners and spouses of people with HD carry an enormous burden. The changes that HD brings — in movement, in behaviour, in personality, in cognition — can be gradual and ambiguous in the early stages, and then increasingly demanding as the disease progresses. The relationship changes in ways that are hard to describe to those outside it. The person they love is still present, and yet is also changing in ways that can be disorienting, painful, and isolating.

Children of people with HD grow up with the awareness — explicit or implicit — that a parent has a serious and ultimately fatal condition, and that they themselves may be at risk. The psychological impact of this knowledge — and of carrying the uncertainty about one’s own genetic status through adolescence and young adulthood — is significant and often under-recognised.

HD families need support that takes the genetic, intergenerational, and psychological dimensions of the condition seriously. This means support not only for the person with HD, but for partners, adult children, and younger family members.

Common concerns

People living with HD — and their families — often share similar questions and worries. Some of the most common:

  • How quickly will HD progress? Progression in HD varies between individuals, but it is generally a gradual process over many years. The average age of symptom onset is 30–50, and most people live 10–25 years after symptoms begin. Early-onset HD can run a more rapid course. Your neurologist is best placed to discuss what is known about your situation.
  • Should I get a predictive genetic test? This is one of the most personal decisions a person can face, and both choosing to test and choosing not to test are valid. What matters is that the decision is made carefully, with proper genetic counselling and psychological support in place before and after the result.
  • My thinking seems slower — is this HD, or something else? Cognitive slowing is a common early feature of HD, but it can also reflect depression, anxiety, sleep difficulties, or medication effects. A neuropsychological assessment can help clarify what is happening and what is driving it — information that is directly useful for both treatment and planning.
  • What should I tell my children about HD in our family? How and when to tell children about HD in the family is one of the most difficult aspects of being a parent with HD or at risk of HD. There are no universal answers, but there are resources and counsellors with specific experience in this area who can help.
  • Can I still drive? Driving in HD depends on the nature and severity of both motor and cognitive changes. In BC, your doctor is required to report medical conditions affecting driving to ICBC. A formal on-road evaluation by an occupational therapist, supported by neuropsychological assessment, can provide objective evidence for this decision.
  • Can I still work? Many people with HD continue working for years after diagnosis, often with accommodations. The timeline depends on your specific symptoms and the demands of your role. A neuropsychological assessment can provide documented evidence of cognitive functioning for workplace accommodation discussions or disability applications.
  • Why has my family member’s personality changed? Changes in irritability, emotional expression, rigidity, and social behaviour are neurological features of HD, not character flaws. Understanding them as such — even when it is hard — can help families respond with greater patience and support.
  • Does HD always lead to dementia? HD does typically involve cognitive decline over time, and in the later stages a person may develop a level of cognitive difficulty consistent with dementia. However, the pattern of decline is gradual and varies between individuals. Neuropsychological assessment can monitor cognitive functioning over time and provide information about where someone is in this process.
  • What if I am struggling with not knowing whether I have the gene? Living with uncertainty about your genetic status is a recognised and significant psychological challenge. Support is available — through the Huntington Society of Canada, through genetic counselling services, and through psychologists and counsellors familiar with HD.

Mental health support in BC

Depression, anxiety, and the profound psychological demands of Huntington’s disease are among the most treatable aspects of what is otherwise a very difficult condition. Support is available, and seeking it — for yourself or for someone you care for — is not a sign of weakness.

Counsellors and psychologists

A psychologist has completed a doctorate in psychology (PhD or PsyD) and is registered with the College of Psychologists of BC. Psychologists provide therapy, can diagnose mental health conditions, and are qualified to conduct formal psychological assessments — useful when there are questions about cognition alongside emotional wellbeing.

A Registered Clinical Counsellor (RCC) typically holds a master’s degree in counselling and is registered with the BC Association of Clinical Counsellors (BCACC). RCCs provide therapy and are well-suited for working through grief, anxiety, depression, adjustment difficulties, and the emotional demands of a progressive condition that affects the whole family.

Both psychologists and RCCs can provide effective, evidence-based therapy. A psychologist may be the better fit if you also need a formal cognitive assessment alongside therapy.

To find a psychologist or counsellor in BC:

Most extended health benefit plans cover a number of counselling or psychology sessions up to a set dollar amount per year. Check with your benefits provider or HR advisor before your first appointment.

Psychiatrists

A psychiatrist is a medical doctor (MD) who has completed specialist training in mental health. Like psychologists, psychiatrists can diagnose mental health conditions — and unlike psychologists and counsellors, they can also prescribe medication. They typically work alongside a GP or therapist rather than replacing them.

Depression in HD has a neurological basis rooted in disruption to striatal and limbic circuits — which means it often responds to medication, and medication assessment is particularly worth having when depression has been present for some time. The decision to try medication is personal and should involve a proper conversation, but the evidence for the effectiveness of antidepressants in HD is solid, and many people describe medication as having made a significant difference to their quality of life.

To access a psychiatrist in BC, ask your family doctor or neurologist for a referral. You can also call HealthLink BC (8-1-1) for guidance on mental health services in your region.

Other BC mental health resources

Living with Huntington’s disease

Support groups in BC

Connecting with others who understand what you are living with — whether you have HD, are at risk, or care for someone with HD — can be one of the most sustaining sources of support available.

Video and media resources

There are fewer dedicated HD podcasts than for some other neurological conditions. The following video series and webinar resources are among the most reputable available:

  • Matt’s Chats — HDYO video series — HDYO’s video series featuring honest, accessible conversations with people affected by HD — covering life with HD, at-risk status, relationships, mental health, and research. A warm and human counterpart to the more clinical information available elsewhere.
  • Huntington Society of Canada Webinars — The HSC’s webinar series featuring neurologists, researchers, social workers, and HD families on topics including treatment updates, cognitive symptoms, caregiving, genetic testing, and research advances.
  • HDSA Caregivers Corner Webinars — HDSA’s webinar series for carers and families, covering the practical and emotional dimensions of supporting someone with HD at each stage of the illness.
  • All in the Mind — BBC Radio 4 — Long-running, award-winning BBC Radio 4 podcast hosted by psychologist Claudia Hammond, exploring mental health, neuroscience, and neurological conditions — with episodes relevant to HD, cognitive change, and psychological adjustment.
  • All In The Mind — ABC Radio National — ABC Australia’s weekly podcast on the mind, brain, and behaviour, with episodes covering neurological conditions, cognitive change, grief, and mental health.

Organisations in BC and Canada

In British Columbia

  • Who can support HD families in BC? — The Huntington Society of Canada maintains chapters and services across BC. Use their chapter locator to find the support and programs available nearest to you.
  • Where are the specialist HD clinics in BC? — HSC’s list of specialist HD clinics across Canada, including BC locations where multidisciplinary HD teams provide coordinated medical, genetic, and supportive care.

Across Canada

  • What is the Huntington Society of Canada? — The Huntington Society of Canada is the national organisation for HD in Canada, providing support programs, research funding, a national helpline, and services for the estimated 4,500 Canadians living with HD and their families.

International

  • What does the HDSA offer? — The Huntington’s Disease Society of America is one of the most comprehensive HD organisations in the world, with a national helpline, Centres of Excellence, research funding, and extensive resources for people affected by HD.
  • What does HDYO offer for young people affected by HD? — The Huntington’s Disease Youth Organisation provides support, information, and community specifically for children, teenagers, and young adults affected by HD — whether living with it, at risk of it, or caring for someone who has it.
  • What is HDBuzz? — HDBuzz is a trusted, scientist-authored resource that translates HD research news into plain English. It is widely recommended by HD clinicians as an antidote to the misinformation and anxiety that can accompany HD research updates.
  • What is the Huntington’s Disease Association (UK)? — The HDA is the UK’s HD charity, producing clear, evidence-based information across all aspects of HD — from genetic testing to caregiving — and providing a specialist advisory service for HD families.
  • What is Enroll-HD? — Enroll-HD is the world’s largest HD research study, enrolling people with HD, people at risk, and family members from across the world. Participation contributes directly to research that may ultimately lead to treatments. Information on taking part in Canada is available through the HSC.
  • What is the European Huntington’s Disease Network? — The European Huntington’s Disease Network coordinates HD research and clinical care across Europe, and produces high-quality information on HD biology and treatment for clinicians and families.

If you are interested in a neuropsychological assessment to better understand cognitive changes related to Huntington’s disease — whether for diagnosis, monitoring, capacity assessment, or pre-manifest evaluation — please contact us or submit a referral.