Caring for the Caregiver

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.

Take strength in identifying yourself as the caregiver. You are making the best decisions you can for you and your loved one. Trust your instincts. Learn what you are good at and what you don’t do so well. This will help you decide when to say “no” and when to ask for help. Take pride in what you do well.

Caregivers often experience frustration, depression, and stress. These emotions can hinder your ability to provide good care and eventually harm your own health. Therefore, commit to taking care of yourself in order to take better care of your loved one.

Infection Control

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.

Prions exist predominantly in the central nervous system which is made up of your brain, spinal cord, and cerebral spinal fluid (the water like solution that bathes the brain and spinal cord). Therefore, normal interaction with people who have CJD should not put you at risk of getting it too.

Social contact

Tips for Daily Routines

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.


If your loved one needs help bathing, it can often become a difficult time.

Try this:

  1. A sponge bath in the tub or on a chair instead of a shower
  2. Talk to your loved one in a soothing voice while bathing and talk through each step you take
  3. Let your loved one do as much as possible
  4. Plan the bath or shower for the time of day when your loved one is at their best
  5. Bathe every couple of days instead of every day
  6. Don’t force anything


Managing Symptoms of Creutzfeldt-Jakob Disease

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.

Personality changes

Changes in your loved one’s mood and temperament are often the early signs of Creutzfeldt-Jakob disease (CJD). They can also be particularly tough for the caregiver to deal with as you forget that it is not personal, it’s the disease changing them.

For anxiety and agitation, try this:

  1. See if you can figure out what triggers the anxious or agitated behavior – you might be able to avoid setting off the behavior by changing the environment or routine

Planning Care for Someone 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?”.

Educate yourself

Learn what you can about CJD. Understanding what is happening to your loved one will help you cope better with the changes and communicate with the medical team providing care. When looking online, read these pages here or browse other well-known medical sites like the National Institutes of Health or the Creutzfeld-Jakob Disease Foundation.

Assess the situation

Medical Terms in Prion Disease

Browse this list of terms and definitions for words often used when discussing CJD.

  • 14-3-3 test: Detection of elevated levels of the 14-3-3 protein in the cerebrospinal fluid (CSF) has been reported to support a CJD diagnosis in the scientific literature, but many people with confirmed CJD have a negative or normal result while many others who do not have CJD, but have other neurological disease, have a positive result
  • akinetic mutism: A state where a person can no longer move or talk due to damage to the base of the brain, but the person is awake (not comatose) and their eyes are open and can follow what is going on around them

Genetics in Prion Disease

Approximately 10-15% of people with prion disease have a genetic form. Genetic CJD is a hereditary genetic disorder due to abnormal changes in the prion gene. More than 20 alterations in the DNA sequence in the gene have been reported. The characteristics of the disease correlate with the different mutation types.

Gene mutations

A gene mutation is a permanent change in the DNA sequence that makes up a gene. Gene mutations occur in two ways:

  1. Hereditary mutations are inherited from a parent, are present from birth, and are passed on to the next generation.
  2. Acquired mutations spontaneously develop during a person’s lifetime, may be present at birth if it occurred prenatally, and may be passed on to the next generation only if the mutation affects the egg or sperm.

Hereditary genetic disorders

Proteins and Prions

CJD belongs to a family of diseases called "prion disease" [pree-on] caused by abnormal "prions" – infectious, misshapen versions of a normal protein. Prions cause a number of diseases in a variety of mammals, including bovine spongiform encephalopathy (BSE or "mad cow disease") in cattle and scrapie in sheep.

What are proteins?

Proteins [pro-teens] are essential to life and are found in all living things. Proteins are contained in every part of your body: skin, muscles, hair, blood, body organs, eyes, fingernails, and bones. Next to water, protein is the most plentiful substance in your body.

Protein is primarily used to build, maintain and repair body tissues, but there are thousands of different proteins that carry out a variety of jobs in your body. The structure of a protein determines its function.

Tests for Prion Disease

Certain tests can help your doctor rule out or support a prion disease diagnosis.

When a diagnosis of Creutzfeldt-Jakob disease (CJD) is suspected, your doctor will likely order a number of tests. These can be helpful to either exclude other neurological diseases or support the CJD diagnosis.

Getting a CJD Evaluation at UCSF

The UCSF Memory and Aging Center has consulted on the evaluation of people diagnosed with rapidly progressive dementia from all over the world. If your doctor thinks you may have CJD or another rapidly progressive dementia, our specialists can review your medical records and see if a clinic visit is appropriate.

Evaluation for Research

Individuals interested in becoming a CJD, rapidly progressive dementia, or related disorder research participant need be screened for eligibility. To expedite this process, please follow the steps listed below.

  1. Complete the Potential Research Subject Intake Form. This form can be printed and mailed along with your medical records (see below).
Syndicate content