cjd

Participating in Research

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.

What is clinical research?

Clinical research is generally considered to be a health-related investigation in human beings that follows a pre-defined plan. The UCSF Memory and Aging Center conducts both observational and interventional types of clinical research.

Hospice Care for CJD Patients

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.

What is hospice care?

Hospice care provides palliative care to relieve suffering and improve the quality of life for people who are suspected to live for less than six months. People with CJD often qualify for hospice due to the rapid disease course. Like palliative care, hospice care can be provided at home, an assisted living facility, a nursing facility or a hospital.

Choosing a hospice care provider

Palliative Care for CJD Patients

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.

What is palliative care?

Palliative care is medical care that concentrates on reducing the severity of disease symptoms without prolonging suffering. The goal is to prevent and relieve discomfort and to improve quality of life for people facing a fatal illness. Palliative care usually employs a team approach and may be provided at any time during a person's illness, even from the time of diagnosis. It may be given simultaneously with other treatments that attempt to treat the underlying disease.

Choosing a palliative care provider

Home Care for CJD Patients

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.

What is Home Care?

Working with Your Family

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

Dealing with Family Conflict

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.

Bathing

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

Communicating

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

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