As there is no treatment or cure for CJD at present and the disease is invariably fatal, the goal of caring for the CJD patient is to provide comfort and the highest quality of life possible for the remainder of the patient’s life. Care is specialised and directed at symptoms and pain relief. Some procedures often include drugs for controlling pain and myoclonus, catheters to collect urine, life sustaining fluids, and frequent repositioning of the patient and massaging to avoid bedsores.

Many CJD patients are brought home and cared for by their families. It is important to remember that if you do choose to care for your loved one at home, you will need a dependable support network. Caring for someone who is dying is physically and emotionally exhausting and unlike health care professionals working in hospitals, you have strong emotional ties to the patient. We do not suggest that the hospital staff who care for CJD patients level of care is routinely unsatisfactory, merely that they are able to return to the ‘real world’ – to a degree – at the end of their hospital shift. It is a responsibility that you will bear for the duration of your loved one’s illness should you choose to care for them at home. While it can be understandably important and possibly cathartic to provide care at home, good quality hospital care with specialised pain management can make a great difference to the patient’s experience.