Living with CJD

Creating a plan for caregiving, and regularly updating it, will help you determine what care you can and cannot provide. It will also help you come up with an answer when someone asks “How can I help?”.

While every person’s experience is unique, CJD tends to cause memory loss, confusion, difficulty with balance and walking, personality changes and involuntary muscle jerks. Oftentimes, you can change things in the environment to help relieve the symptoms.

Activities of daily living are activities related to personal care and include eating, bathing, dressing, getting in or out of bed or a chair, and using the toilet. When people are unable to perform these activities, they need help from their caregivers.

While there is an infectious form of CJD, even this rare form of CJD is actually quite difficult to catch from someone else. Caregivers should feel free to have plenty of social contact with their loved ones, but should follow “universal precautions” if they provide any medical assistance.

One of the biggest challenges for caregivers is finding the time and energy to take care of your own health. Taking care of yourself will allow you to provide better care for your loved one.

Family dynamics can change with a serious illness. Being informed and prepared for different reactions will help you avoid destructive cycles.

If the goal is to reduce your workload, think about hiring help for cleaning the house, running errands or preparing meals. More skilled helpers might be required to help with bathing, dressing or toileting. And finally, registered nurses are available if you need skilled medical care.

The goal of palliative care is to relieve the pain, symptoms and stress of serious illness. Palliative care may be provided at any time during a person's illness, even from the time of diagnosis. You can get palliative care whether you are at home or in an assisted living facility, nursing facility or hospital.

Hospice care provides palliative care to relieve suffering and improve the quality of life for people who are expected to live for about six months or less. People with CJD can often get into hospice earlier due to the rapid disease course. Like palliative care, hospice care can be provided whether you are at home or in an assisted living facility, nursing facility or hospital.

Choosing to participate in research is an important personal decision, and we hope this section will help you better understand the research process. UCSF's Memory and Aging Center (MAC) is one of the few places in the world that conducts research and clinical trials of CJD. The CJD research at the MAC focuses on understanding prion disease, diagnosing it earlier and more accurately, and developing treatments for CJD.

End-of-life plans can be scary to think about, but the speed of changes with rapidly progressive dementias make it essential to start planning as early as possible.