These conversations are hard to start and easier to have early. The UK recommendations for CJD care published in 2026 advise beginning them at diagnosis, or as soon as possible afterwards, while the person can still take part.
What is worth settling first
Three things.
What treatment the person would want, and what they would not. Where they would prefer to be cared for, and where they would prefer to die. And who should speak for them if they can no longer speak for themselves.
The names and legal forms for these differ from country to country. Ask the care team or a local advice service which documents apply where you live, and how to complete them. This page cannot give legal advice.
If nothing was written down
That is common, and the 2026 recommendations say so directly: because the illness moves so fast, many people have not discussed their preferences before they become unwell. The guidance asks staff in that situation to talk with the family about the person’s views, values and preferences, and to use those in deciding what is in their best interests, after reviewing any existing documents and the person’s capacity.
What you remember them saying has standing. You are not being asked to decide what you want for them, and it helps to hear that said plainly.
Where a disagreement cannot be resolved, the guidance notes that legal advice may be needed. A family in that position should ask for it rather than carry it.
Plans that prevent crises
Two practical things are worth asking about by name.
An escalation plan, written down, saying what should and should not happen if the person becomes suddenly worse, and whether hospital admission is intended. Without one, an ambulance crew at three in the morning has no instructions and will act accordingly.
Anticipatory medicines, prescribed in advance and kept in the house, so that symptoms can be treated without waiting for a prescription. The 2026 recommendations advise prescribing these so staff can act without delay, and note that they are given by injection under the skin or into a vein rather than by mouth, because swallowing is usually unsafe by then.
The same guidance advises reviewing medicines at this stage and stopping anything that is no longer essential.
Where people are cared for
In the UK, the figures in the 2026 recommendations are that 28 percent of people with these diseases die at home, 28 percent in a hospice, 23 percent in a residential or nursing home and 21 percent in hospital.
Those numbers are useful for one reason: none of the four is unusual, so a preference for any of them is realistic enough to state. Hospice and palliative care teams help whichever is chosen, and contacting them early makes a home death more achievable rather than less.
Who helps with all of this
The palliative care team, the GP, and the specialist prion service. In the UK the national services can advise the local team without the family having to arrange it. Palliative and hospice care describes what these teams do.
After a death
Decisions about a post-mortem examination and brain donation usually come up at this point, and they are covered on autopsy and brain donation. Support does not stop at the death: grief and bereavement and finding a counsellor cover what comes next. Practical and financial help covers money and paperwork.
Anything specific to this person’s treatment or capacity belongs with the treating team.