There's no proven cure for Creutzfeldt-Jakob disease (CJD), but clinical studies are under way at the National Prion Clinic to investigate possible treatments.
At present, treatment involves trying to keep the person as comfortable as possible and reducing symptoms through the use of medicines.
For example, psychological symptoms of CJD, such as anxiety and depression, can be treated with sedatives and antidepressants, and muscle jerks or tremors can be treated with medicines such as clonazepam and sodium valproate.
Any pain experienced can be relieved using powerful opiate-based painkillers.
Many people with CJD draw up an advance directive (also known as an advance decision). An advance directive is where a person makes their treatment preferences known in advance, in case they can't communicate their decisions later because they're too ill.
Issues that can be covered by an advance directive include:
- whether a person with CJD wants to be treated at home, in a hospice or in a hospital once they reach the final stages of the condition
- what type of medications they would be willing to take in certain circumstances
- whether they would be willing to use a feeding tube if they were no longer able to swallow food and liquid
- whether they're willing to donate any of their organs for research after they die (the brains of people with CJD are particularly important for ongoing research)
- if they have respiratory failure (loss of lung function), whether they would be willing to be resuscitated by artificial means – for example, by having a breathing tube inserted into their neck
Your care team can provide more advice about making an advance directive.
If a person is thought to have CJD, they're referred to the National Care Team for CJD in the National CJD Research and Surveillance Unit in Edinburgh, or the National Prion Clinic in London, for diagnosis and care.
A doctor and nurse from these services will be assigned to liaise with local services, including the person's GP, social worker, physiotherapist and occupational therapist.
Specialist teams are available to diagnose and offer clinical and emotional support to patients and their families, and to work alongside the local care team. A local care team may include doctors and nurses, occupational therapists, dietitians, incontinence advisers and social workers.
Treating symptoms of CJD
For more information about how some of the specific symptoms of CJD may be treated see:
Care and support in the advanced stages of CJD
As CJD progresses, people with the condition will need significant nursing care and practical support.
As well as help with feeding, washing and mobility, some people may also need help urinating. A catheter (a tube that's inserted into the bladder and used to drain urine) is often required.
Many people will also have problems swallowing, so they may have to be given nutrition and fluids through a feeding tube.
It may be possible to treat people with CJD at home, depending on the progression and severity of the condition.
Caring for someone with CJD can be distressing and difficult to cope with, so many carers prefer to use the specialist services of a hospital or hospice.
Read more about end of life issues, end of life care and your own emotional wellbeing if you're caring for someone else.