What is Lewy Body Dementia?

If there ever was a marriage between Parkinson’s Disease and Alzheimer’s, Lewy Body Dementia would be their troubled child.  It has a separate pathology than other dementia’s and is characterized by hallucinations, terrors, confusion in addition to the regular dementia symptoms.  Other signs and symptoms include

  • Fluctuating cognition–confused and clear then confused then clear
  • Visual hallucinations that are colorful and detailed
  • Capgras syndrome where there is more than one of everything, including you the caregiver
  • A notable lean in one direction when sitting
  • REM sleep disorder/difficulty sleeping
  • Changes in walk similar to Parkinson’s disease
  • Progresses to the place of not recognizing loved ones

Most would tell you there’s nothing you can do about it other than take the medicines and ride the wave of death.  I am here to tell you that is not true.  There is hope!  There is always hope!  We have seen an AMAZING turn around.    AMAZING.  Miraculous.  God-given.  These have come through prayer and through working with a pharmacist/naturopath (Lisa Everett/O”Brien Pharmacy) who has no fear of LBD.

Medicines You May Need to Avoid with LBD

Understanding Lewy Body Dementia is never more important than when it comes to pharmaceuticals.  LBD has a very separate pathology from Parkinson’s and Alzheimer’s and as such has different drug intolerances.  Here are some drug interactions that may be contraindicated/not best for those with LBD (unless your doctor explicitly recommends otherwise):

Benzodiazepenes:  Haldol, Ativan, Versed and all the other Benzo’s in this group.

Antihistamines:  Benadryl, Claritin, etc…

Anti-psychotics:  Haloperidol, thioridazine, fluphenazine, Abilify and other anti-psychotics. Some have found that Seroquel is one of the few anti-psychotics that can help with LBD.

General anesthesia:  Some traditional anesthesia medicines may be contraindicated for those with LBD.  Talk to your doctor.  Some have found helpful going with a spinal block and propofol/fentanyl but check first with your anesthetist prior to a surgery.

What can you do about it?

  1.  Be Informed–Knows and understand as much as LBD as you can.  It’s not like typical dementias and should not be treated as such.
  2. Lewy Body Dementia can only be definitively diagnosed after death.  Until then it is typically diagnosed based on particular symptoms and can actually be frequently misdiagnosed.  Make sure you find a doctor, neurologist or specialist who has skills with Lewy Body Dementia.
  3. Know your treatment options.  Find medical professionals who will work with you and your loved for best desired outcomes.
  4. Never give up hope!  Fight for the health of your loved one.  Hope will be fuel in the tank.

Understanding Lewy Body Dementia goes much beyond this short article.  Here are some resources that may be helpful:


Lewy Body Dementia Association - LBDA

Lewy Body Dementia Association

The LBDA offers some helpful resources and guidelines.  Getting information and understanding is critical for you and your loved one on this journey.

O'Brien Pharmacy

Lisa O’Brien (Pharmacist/Naturopath) of O’Brien pharmacy has had results with those with LBD.  She is not considered a regular physician and does not dispense medical advice.  She does not take insurance.