- Neurologist
- Family doctor
- Palliative care
- Nurses
- Speech and language therapist
- Occupational therapist
- Social worker
- Counsellor
- Support groups
A diagnosis of prion disease lands on a family all at once. There is no cure yet, and treatment aims to relieve symptoms and keep the person comfortable. That is hard to read. It also means that the things which help are practical and can start today.
What does treatment mean here?
Comfort and support. Medicines can ease anxiety, low mood, muscle jerks and pain. As the illness progresses, help with eating, washing and moving becomes part of daily care, and many people develop difficulty swallowing. Care can be at home, in hospital or in a hospice, depending on how the illness is going and what the family can manage. CJD describes the illness, and After a new diagnosis goes through the first weeks in more detail.
Caring at home is safe. CJD does not spread through ordinary contact, and families and carers need no special precautions.
The next three steps
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Find out who is coordinating care. In the UK, the National CJD Research and Surveillance Unit and the National Prion Clinic form the national care team, and a doctor and nurse from these services liaise with the GP, social worker, physiotherapist and occupational therapist. Ask whether they are involved. In the United States, ask the neurologist who is coordinating and who to call out of hours.
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Ask for palliative care or hospice now. The CJD Foundation advises families to contact hospice as soon as a diagnosis is given, because hospice teams bring equipment, knowledge and people, and can help long before the final stage. In the UK, the CJD Support Network advises involving services early for benefits, day centres, respite and long term care, with a palliative care referral among them. Asking early puts the help in place before it is needed.
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Phone a support organisation. The CJD Foundation helpline is 1-800-659-1991 and can send a caregiving guide. The CJD Support Network helpline is 0800 774 7317. Both exist for families as much as for the person who is ill. Support groups by country lists organisations elsewhere.
What about wishes and decisions?
Because the illness can move quickly, it helps to talk early about what the person would want: where they would like to be cared for, who should speak for them, and what treatment they would or would not want. In the UK this can be written down as an advance directive. In the United States, the CJD Foundation suggests a healthcare power of attorney and notes that requirements differ by state. Urgent support is there for the days when it is all too much, and Prion disease runs in my family is for families where an inherited form has been found. The Start here page lists every route.
For anything about this person’s medicines, symptoms or test results, the treating team is the one to ask.