Frontotemporal Dementia Caregiver Support Center

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Types of Dementia - Creutzfeldt-Jakob

The information on this page is for reference and educational purposes. There is no substitute for seeing a doctor.
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The National Institutes of Health defines Creutzfeldt-Jakob disease (CJD) as a rare, degenerative, invariably fatal brain disorder. Typically, onset of symptoms occurs at about age 60. There are three major categories of CJD: sporadic CJD, hereditary CJD, and acquired CJD. There is currently no single diagnostic test for CJD. The first concern is to rule out treatable forms of dementia such as encephalitis or chronic meningitis. The only way to confirm a diagnosis of CJD is by brain biopsy or autopsy. In a brain biopsy, a neurosurgeon removes a small piece of tissue from the patient's brain so that is can be examined by a neurologist. Because a correct diagnosis of CJD does not help the patient, a brain biopsy is discouraged unless it is needed to rule out a treatable disorder. While CJD can be transmitted to other people, the risk of this happening is extremely small.

Best FTD Resources

What If It's Not Alzheimer's
© 2003 by Lisa Radin and Gary Radin

Chapter 1
Pages 23-25

Association of Frontotemporal Dementia (Website)

No information was found on this website about this topic.

Pick's Disease Support Group (Website)

No information was found on this website about this topic.

University of California, San Francisco (Website)
Family Caregiver Alliance (Website)
National Institutes of Health (Website)


Other Internet Articles

The CJD Foundation provides emotional support to individuals and families dealing with CJD and other prion diseases as well as practical information to caregivers through our website

They also offer a detailed brochure about CJD.

A good Yahoo Support Group is CJD Voice.

The National Prion Disease Pathology Surveillance Center provides this website about CJD.


The Alzheimer Society of Canada provides this web page about CJD


The National Creutzfeldt-Jakob Disease Surveillance Unit monitors CJD information for United Kingdom at the Western General Hospital in Edinburgh, Scotland


The Centers for Disease Control and Prevention offer this web page about CJD


Yahoo Health website offers this web page

Yahoo also offers this web page with useful links about CJD


Fast Progressing Disease FTD, Pick's, CJD ?

From a Yahoo Support Group Member
The family received a CJD diagnosis from a research center, but has not received a final diagnosis from the CJD Surveillance Center in Cleveland.
(I would like to remind you each case of CJD is different and this may not be an accurate symptoms and diagnosis)


My sister's (died at age 62) symptoms (more or less--of 26 month CJD duration), included:

Very early--prodromal for maybe a year before onset

  1. possible word-finding problems
  2. possible mood changes, indifference to things and people she normally cared about
  3. spent much time in off-work hours doing art
  4. more effusive-verbose

Onset and first 12 months:

  1. confusion and hysteria over losing objects -like keys
  2. couldn't do complex processes like logging on to the computer at work and figuring payroll deductions (quit job)
  3. numbers--couldn't balance checkbook, make change, or dial into pin number to retrieve phone messages
  4. breathy voice
  5. weight loss
  6. lost ability to drive (combination of forgetting how to work the car and getting lost on familiar roads)
  7. mood change--alternating euphoria, anger, fright, crying, desperation, frustration, confusion, occasionally went "berserk" --screaming, grabbing, yelling
  8. intense, repetitive verbalization of words and phrases, and repetitive actions
  9. paranoia, possible hallucinations
  10. stiff extremities-especially legs, shuffling gait, loss of balance- could not distinguish "edges", curbs, drop-offs
  11. extreme possessiveness of personal objects--glasses, shoes, rings, pills, etc--scream if you tried to take away
  12. said her hands were "shaking" even though they weren't.
  13. rapid mental decline--no sense of "self"--afraid of or argued with reflection in a mirror. could name only "relationships", i.e.."my husband," "my sister" (no names). Then, called every familiar person Momma". Cried and wailed when we left her.
  14. Extreme agitation amid strangers
  15. progressed to mental level of a 2 year old or less--in the first 10 months of disease.
  16. incontinence began, and repeated urinary infections.

Later symptoms (mostly in nursing home):

  1. Extreme rigidity of limbs, had some mobility in a wheelchair--"foot propelled", then chair bound thereafter
  2. became mostly mute
  3. began pulling hair out and scratching skin (had to have head shaved
    and wear mitts)
  4. "flailed out" with arms, sometimes striking herself or objects, sometimes threw herself out of bed
  5. no longer tracked movements with eyes, may have been blind (?)
  6. could swallow, but not chew--had to be fed soft foods very slowly--could still suck from a straw
  7. neck arched (on the backside)
  8. extreme loss of muscle mass, wasting


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