There is no proven therapy or cure for any type of Creutzfeldt-Jakob disease (CJD), although clinical studies are under way at the National Prion Clinic.
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
- other medicines, such as clonazepam and sodium valproate, can be used to treat muscle jerks and tremors
- opiate-based painkillers can provide effective pain relief
Advance directive
Many people with CJD draw up an advance directive. This is where you make your treatment preferences known in advance, in case you can't communicate your decisions later because you're too ill.
Issues that can be covered by an advance directive include:
- whether you want to be treated at home, in a hospice or in a hospital once you reach the final stages of CJD
- what type of medications you'd be willing to take in certain circumstances
- whether you would be willing to use a feeding tube if you were no longer able to swallow food and liquid
- whether you're willing to donate any of your organs once you die (the brains of people with CJD are particularly important for ongoing research)
- if you have respiratory failure (loss of lung function), whether you'd be willing to be resuscitated by artificial means, for example by having a breathing tube inserted into your neck
Your care team can provide more advice about making an advance directive.
Specialist team
When somebody is diagnosed with CJD, they are referred to the National Care Team for CJD in the National CJD Surveillance Unit, and the NHS National Prion Clinic for diagnosis and care.
A doctor and nurse from these services will be assigned to the patient to liaise with local services, including the patient'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.
For more information on how some of the specific symptoms of CJD are treated see:
Nursing care and support
As the condition progresses, people with CJD will need significant nursing care and practical support.
As well as help with feeding, washing and mobility, some people may need help with urinating.
Often, the use of a catheter (a tube that is inserted into the bladder and used to drain off urine) is required.
Many people will 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, but this will depend on the progression and severity of the condition.
Caring for someone with CJD can be distressing and difficult to cope with.
Rather than coping at home, many carers prefer to use the services of a hospital or hospice.
Read more about end of life issues, end of life care and your own emotional wellbeing if you are caring for someone else.
