- Neurologist
- Family doctor
- Palliative care
- Nurses
- Speech and language therapist
- Occupational therapist
- Social worker
- Counsellor
- Support groups
- EarlyDiagnosis, wishes, support and planning.
- MiddleHelp at home, safety, eating and communication.
- LaterComfort, nursing care and family support.
- AfterGrief support, and research if wished.
Every person is different, and changes can come quickly.
Most families find that the practical questions arrive faster than the answers. This page is the way in to the rest of the care section.
Who is meant to be helping?
More people can be involved than families expect. UK specialists writing in 2026 recommend a team that includes the general practitioner, occupational therapy, physiotherapy, speech and language therapy, district nurses, geriatrics and old age psychiatry, palliative care, social work and the national prion services.
You do not have to assemble that team yourself. The GP and the hospital team can refer, and in the UK the national prion services can advise the local team. Asking early who is coordinating care is a fair question and usually a useful one.
What should happen first?
Talking about what the person would want is easier early than late, because a prion disease can move quickly. The 2026 recommendations advise seeking those preferences ideally at the time of diagnosis, and encourage involving palliative care early to help guide the conversations. After a new diagnosis sets out those first weeks, and what to expect describes how the illness usually unfolds.
What is there for daily life?
The care pages go one topic at a time:
- Daily care at home
- Eating and swallowing
- Communication and behaviour
- Palliative and hospice care
- End of life decisions
- Practical and financial help
- Caring for yourself
The CJD Foundation in the United States suggests contacting hospice early, even before care feels urgent, because hospice teams bring equipment, knowledge and people who can help with washing, dressing and moving someone safely.
What about the person doing the caring?
Carers in prion disease carry a lot in a short time. The 2026 recommendations list what helps: information about the illness itself, training in care skills, respite, practical and financial help, and support for the carer’s own mental health. Asking for respite is not a failure, and arranging it usually takes longer than people expect, so it is worth raising early.
Caring for yourself goes further on this.
Where do families find other families?
Support organisations exist in many countries and are listed in the directory kept by the CJD International Support Alliance. The CJD Foundation runs a telephone helpline and virtual groups for current caregivers, led by family members who have cared for someone themselves. Support groups by country has the contacts.
Clinicians who want the clinical detail behind these pages can start at for clinicians. If you are looking into research taking place outside the United States, see trials outside the US.
For anything about one person’s symptoms, medicines or test results, ask the treating team. Nothing here replaces them.
Explore
- Autopsy and brain donationWhat a post-mortem examination and brain donation involve in CJD, who arranges it, whether it costs anything, and how it affects funeral plans.
- Caring for yourselfLooking after yourself while caring for someone with CJD: sleep, your own health, respite, money, anticipatory grief, and where carers can ask for help.
- Communication and behaviour changesWhy speech, understanding and behaviour change in CJD, how to read distress as a message, and what helps before medicines are considered.
- Daily care at homePractical home care in CJD: falls and moving safely, skin care, continence, equipment, and which professionals arrange what.
- Eating and swallowingSwallowing problems in CJD: why eating becomes difficult, what a speech therapist can do, mouth care, and how tube feeding decisions are made.
- End of life decisionsPlanning ahead in CJD: recording what someone wants, naming who speaks for them, medicines kept ready at home, and where people are cared for.
- Finding a counsellorHow to find counselling support when prion disease affects your family, including genetic counsellors, psychological support and bereavement services.
- Grief and bereavementGrief in CJD, including grief that starts before the death, and where bereaved families and at-risk relatives can find support.
- After a new diagnosisThe first weeks after a CJD or prion disease diagnosis: what to ask, who to involve, and where families can get support straight away.
- Palliative and hospice careWhat palliative and hospice care offer in CJD and other prion diseases, when to ask for them, and who is on the team.
- Practical and financial helpMoney, equipment and paperwork in CJD: what help exists, who arranges it, and what differs between countries.
- Support groups by countryPrion disease and CJD support organisations by country, with what each offers families and how to reach them.
- Talking with childrenHow to tell children that someone has CJD or has died: plain words, honest answers, funerals, and where families can get help.
- What to expectWhat usually happens as a prion disease progresses, in plain words, and what care can do at each stage for the person and the family.
Sources for this page
- Ng M and others. Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disorders. Age and Ageing 2026 (PMC full text)
- NHS: Creutzfeldt-Jakob disease (CJD)
- CJD Foundation: caregiver support
- CJD International Support Alliance: global directory of patient associations