Creutzfeldt-Jakob disease

  1. 0
    I am looking for information regarding Creutzfeldt-Jakob disease from anyone who has cared for a hospice patient with this disease. I have my first patient with this disease and want to be able to give her the best care/comfort I can. Can anyone give me an idea of what is coming or complications we may be up against? Supplies/meds it may be good to have on hand?

    Any ideas would be appreciated. It seems to be a very fast, progressive path we are on and she is only 37.
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  3. 11 Comments so far...

  4. 3
    i've only taken care of one pt with cjd, so i am unsure of the trajectory it follows.
    with my pt, i learned:

    that as a neurodegenerative disease, mostly what i saw was lots of spasticity/hyperreflexia, agitation...neuro-irritation type s/s.

    if your pt has dysphagia - thickened liquids.
    but even then, it was challenging because pt's head was jerking (myoclonus?).

    there was lots of tactile sensory disturbances - even the slightest touch provoked pt, resulting in increased agitation.
    since then, benzos helped with muscle relaxation...
    and peaceful, soothing environment.

    high temp - tepid sponge baths and fans! (apap suppositories didn't work well with pt)
    (give benzo before sponge bath - or pt becomes extremely agitated, flailing, spastic)

    bladder/bowel issues: prone to constipation - try to prevent.
    and urinary incontinence - the wet irritated pt, improved when changed to catheter.

    everything about this pt...was explosive and aggressive.
    it entailed physical and mental anguish/irritability...until pt finally lost consciousness.
    even then, i made sure to keep her sedated/relaxed.

    i'm sorry if i'm all over the place.
    that is precisely how i felt in caring for this pt.
    it is such a forceful and fulminant disease.
    benzos/sedatives are the mainstream rxs.
    your interventions are going to revolve around keeping every aspect of pt's body, mind, and spirit - quiet, soothing.

    best of everything, to you and your pt.

    leslie
    tewdles, sharpeimom, and Esme12 like this.
  5. 1
    Quote from tolbbk
    I am looking for information regarding Creutzfeldt-Jakob disease from anyone who has cared for a hospice patient with this disease. I have my first patient with this disease and want to be able to give her the best care/comfort I can. Can anyone give me an idea of what is coming or complications we may be up against? Supplies/meds it may be good to have on hand?

    Any ideas would be appreciated. It seems to be a very fast, progressive path we are on and she is only 37.


    Thank you, Leslie. I appreciate your help and advice! I'm afraid this will be a huge challenge for everyone involved.

    At this point, there seems to be more anxiety than agitation. Just admitted to hospice less than a week ago, and we have done daily visits since admit d/t pain control and other issues that arise each day. I have a feeling that she doesn't really understand her prognosis, as this has come on so fast. She was walking and functioning in March. Lots of family dynamics too - young family with 7 children.

    She can't walk, can't move her legs at all, and screams in pain when someone else moves them. Already getting bilat foot drop. No DTR's in her lower extremities. BUE extemities weak, hands draw up at times. Extreme short term memory loss. Makes total sense when talking to her, but forgets the entire conversation 15 seconds later, so you have the same conversation repeatedly. Very drowsy for the last 2 months (as stated by H&P from hospital stays), even before pain meds started. Totally incontinent B/B. Constant c/o pain complicated by past hx of drug use...

    Did your patient have these type of symptoms too?
    GrnTea likes this.
  6. 0
    I am just kind of curious...do you know how exactly this patient contracted this disease?
  7. 3
    Creutzfeldt-Jakob Disease - CJD Foundation This may give you ideas but from the one case I saw it was quite enviorments, symptomatic treatment, remove irritants, medicate freely.
    tewdles, sharpeimom, and GrnTea like this.
  8. 4
    very freely. she is aware of what is happening at some level, and it's horrible.
  9. 2
    It's that whole.....live mind in a disobedient/dead body. One of my greatest fears.
    turnforthenurseRN and sharpeimom like this.
  10. 0
    No idea. But - this all started after having Gastric Bypass in February...
  11. 0
    Very interesting..I have been caring for a hospice pt since Sept w/ CJD who also received gastric bypass surgery prior to dx.
  12. 0
    I wonder if they received blood...there is concern that this is transmitted in that fashion. Or cannibalism...probably not that eh?

    Milieu is extremely important for these patients.
    The last one I care for required continuous infusion to control her anxiety and agitation.


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