The Generative Brain

Finding a counsellor

Two different kinds of counsellor come up in prion disease: a genetic counsellor, who talks with families about an inherited change in a gene, and a counsellor or psychologist for emotional support. Your GP, the specialist team and the national support organisations can each point you to both.

The word counsellor covers two quite different jobs, and families often need both at different moments.

Which kind of counsellor do I need?

A genetic counsellor works with families where an inherited change in a gene is involved. They explain what is known, what a test can and cannot show, and what the options are, and they come before any genetic test rather than after it. Counselling comes first explains the reason for that order.

A counsellor, psychologist or psychotherapist in the ordinary sense is there for how you are coping: the fear, the exhaustion, the anger, the grief that often starts long before a death. Neither replaces the other.

How do I find a genetic counsellor?

Through the medical team. In most countries the route is a referral from the GP or the neurologist to a clinical genetics service. In the United Kingdom the specialist prion service can also advise. In the United States, the National Society of Genetic Counselors keeps a public directory at findageneticcounselor.nsgc.org, and the CJD Foundation helpline can suggest how to find and work with a genetic counselling professional.

Appointments are often available by video. In the society’s 2023 survey of more than 3,000 genetic counsellors, 82 percent of those giving direct patient care reported using audiovisual telehealth, so distance need not rule out being seen.

Cost and cover vary. The society notes that genetic counsellors are not recognised providers by all payers in the United States, including the Centers for Medicare and Medicaid Services, and it supports federal law to change that. Asking about cost before the appointment avoids a surprise.

How do I find emotional support?

Several routes are usually open at once.

The treating team can refer. The 2026 UK recommendations for palliative and supportive care list clinical neuropsychology and psychiatry among the professions involved, and name mental health support for carers as part of what should be offered.

National support organisations have their own services. In Spain, the Fundacion Espanola de Enfermedades Prionicas offers free individual psychological support and a grief group. In the UK, the CJD Support Network runs a helpline and quarterly evening online groups, one for people affected by inherited prion disease and one for former carers. Support groups by country lists the others.

Hospice and palliative care teams include social workers and bereavement services, and that support often begins before a death rather than after it.

What should I look for in a counsellor?

Someone who will hear what this illness actually is. Many counsellors will not have met a prion disease before, and that is workable if they are willing to learn; the national support organisations can supply information for them. Ask whether they have experience with serious illness, anticipatory grief, or families living with a genetic risk.

You are allowed to try someone and decide they are not right for you.

What if the question is about being at risk myself?

That is genetic counselling territory, and it is a conversation, not a decision you have to make at the first appointment. Choosing not to have a test is a valid choice, and a counsellor should support that as readily as the opposite. For how the family side is handled, see counselling comes first.

Care and support is the hub for the rest of this section. End of life decisions covers the formal choices families face. Grief and bereavement covers the time after. Countries sets out what is available in different places.

Nothing on this page is advice about one person’s situation. A genetic counsellor or the treating team can answer that.

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