After a new diagnosis

What is worth asking at the next appointment?

Three questions carry a lot of weight:

Who is coordinating care, and who do we phone out of hours? Can palliative care be involved now rather than later? Can the specialist prion service advise the local team?

UK specialists writing in 2026 advise involving palliative care early, and recommend a team that reaches well beyond the hospital: the GP, district nurses, occupational therapy, physiotherapy, speech and language therapy, social work, old age psychiatry and the national prion services. In the UK these specialist services can support the local team without the family having to arrange it.

It also helps to write down what you are told. Families often say afterwards that they remember little of these conversations. The CJD Foundation offers a doctor visit worksheet to take to appointments for this reason.

Why talk about wishes so soon?

Because prion diseases can move quickly, and because the ability to join in those talks may not last. The 2026 recommendations say preferences should be sought as soon as possible, ideally at the time of diagnosis. That can cover where someone would want to be cared for, who should speak for them, and what they would and would not want done.

You do not need legal language to start. End of life decisions explains the formal options, and the services that help with them.

Can the family catch it?

No. The 2026 recommendations state that there is no evidence CJD passes between people through ordinary social and clinical contact. Hospitals use extra precautions only for particular procedures and tissues. Holding someone’s hand, sharing meals and caring for them at home are safe. People with a prion disease, and people at increased risk, cannot give blood or donate organs.

If infection control guidance is being applied in a way that keeps you apart from your relative, that is worth raising, and a support organisation can help you raise it.

What should I do about hospice?

Contacting hospice or a palliative care team early gives you people who know how to get equipment, manage symptoms and support the family, before anything becomes urgent. The CJD Foundation advises families to make that call once a diagnosis is given rather than waiting. Palliative and hospice care describes what these teams do.

Who else can I talk to?

Support organisations for prion disease exist in many countries, listed by the CJD International Support Alliance. The CJD Foundation in the United States runs a telephone helpline and virtual groups for people currently caring for someone. The CJD Support Network in the UK runs a helpline and quarterly evening online groups, one of which is for families affected by inherited prion disease. Support groups by country has the details.

Grief often starts well before a death. Grief and bereavement is there whenever you need it, and what to expect describes what may happen, when you are ready to read it.

Questions about this particular diagnosis, these test results or this person’s treatment belong with the treating team.