How Lewy Body Dementia Contributes to Depression and Hallucinations

The tragic death of actor Robin Williams left many sad and confused, wondering what could cause one of the greatest men in Hollywood to take his own life. A pathology report recently revealed, however, that prior to his death, Williams had diffuse Lewy Body dementia.

How Lewy Body Dementia Contributes to Depression and Hallucinations

Dan Steinberg/AP

A Difficult Diagnosis of Lewy Body Dementia

Lewy Body dementia (LBD) is one of the most common types of dementia that affects more than 1.4 million people in the United States. Specifically, 10-25% of all dementia cases.

However, it can be difficult to diagnose and many people who have it are initially diagnosed with Parkinson’s disease, a condition which Williams was also reportedly living with.

Symptoms of LBD frequently overlap with symptoms of other dementias as well as Parkinson’s and include:

  • Visual hallucinations
  • Delusions
  • Rapid Eye Movement (REM) Sleep Disorder
  • Trouble initiating movement
  • Memory loss
  • Confusion
  • Hunched posture
  • Rigid muscles
  • Trouble balancing

Similar to other types of dementia, there is no single test to diagnose LBD, and no known cause or cure. Treatment options focus on controlling symptoms and can include cholinesterase inhibitors, antipsychotic drugs and antidepressants.

Lewy Body Dementia and Depression

Hallucinations and delusions are hallmarks of LBD, which Gayatri Devi, a neurologist and memory disorder specialist at Lenox Hill Hospital in New York, says can be made worse by some Parkinson’s medications:

“Patients with Lewy Body disease can hallucinate on their own but [then] give them a Parkinson’s drug, and it can make hallucinations worse. Drugs used to treat hallucinations can cause symptoms of Parkinson’s,” she says.

Williams’ widow, Susan Schneider Williams, believes his dementia was the main factor in his suicide, saying, “It was not depression that killed Robin.” She continued:

“This was a very unique case and I pray to God that it will shed some light on Lewy bodies for the millions of people and their loved ones who are suffering with it. Because we didn’t know. He didn’t know.”

There is still much work to be done and so much more to understand about Lewy Body dementia.

Angela Taylor, programming director of the Lewy Body Dementia Association says, “Though his death is terribly sad, it’s an opportunity to inform people about this disease and the importance of early diagnosis.”

Do you have any personal experience with Lewy Body Dementia? What sort of symptoms has it caused you or a loved one? Share your LBD stories with us in the comments below.

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Please leave your thoughts and comments

  • Julia B

    My father has Parkinson’s and Lewy Body Dementia. I am amazed at the swift progression of his symptoms. I did not realize his hunching over was part of the disease. As he tries to walk, his leg muscles freeze up on him and he can’t move. The visual hallucinations are already kicking in as well.

    • lee

      My husband also has dementia with lewy bodies and Parkinson’s.. He is obsessed with the hallucinations.. He is 71. Has all the same symptoms and is very irritable.

    • Anita Thompson

      I am Julia’s sister. I agree that his progressions has been very swift. He does still have some good days to, most are now what I would call bad.
      My Mother ,husband and I just went to a conference through the Alzhiemers Ass. and it was very informative. they also discussed Lewy Body . But so far he seems to still have a good outlook and is in positive spirits most days.

  • Joy

    After the death of my husband, a brain harvest was performed at Vanderbilt. It showed Lewy Body Dementia. My husband also had Parkinson’s for a total of 20 years, we were very aggressive in the treatment for Parkinson’s to include deep brain stimulators which gave him much relief from the many symptoms of the disease. The last 18 months of his life were very difficult due to the Lewy Body Disease. He became a totally different personality and suffered greatly from hallucinations, agitation, and anger. We basically controlled aggression and behaviors with anti hallucinatory drugs that let him sleep through the night and a combination of other dementia drugs during the day so he could function. Parkinson’s disease and Lewy Body Dementia are a very bad combination of diseases for patient and family caregivers.

  • Robin

    I keep wondering if Lyme Disease has been ruled out on Robin? A lot of these symptoms are similar to Lyme Disease and its co-infectiond and Suicide can be the last resort if not diagnosed or treated.

    • Melissa Sanders

      Me too. I am wondering the same thing. Why isn’t anyone trying to figure it out? These diseases that have no test.

  • Anna M.

    My husband had PD and lewy body dementia as well. In the last few years of his life he became very agitated combative and both physically and verbally abusive. It was very hard to take and I still am dealing with the residue of this disease nearly 3 years later. I have been in therapy for a time and this helped. Sadly his father aunt and cousin also had PD but w/o dementia so this horrible disease is bound to rear its ugly head as time goes on. He comes from a very large family. I applaud Mrs. Williams for speaking out about Lewy Body Dementia as it is very unknown and misunderstood.

    • caitlinburm

      Hi Anna,

      Thank you for sharing your thoughts and personal story with us. We completely agree with you.

      We will be adding Mrs. Williams recent comments to this blog article to create more awareness about this disease.

      We are so very sorry for your loss and will be keeping you in our minds during this time.

  • Trudy Pickersgill

    Trudy from Fonthill. My 75 year old husband was diagnosed 8 years ago with Lewey Body Dementia. He has both day and nighttime visual hallucinations. He speaks very kindly to the animals, people or children he thinks are in our apartment. We are very very fortunate that the Parkinson’s shuffle is just starting. He walks and exercises every day and now that I fear that he might get lost, I walk with him. The benefit is that my clothes are getting looser. We laugh together when his underwear gets put on backward and try to enjoy the times we share. We both know that some day he will need more care than I can give him. Exelon pills and patches have been very helpful with controlling this disease.

  • Darry

    Not a word here regarding how Lewy Body dementia is diagnosed. Duh.

  • Mary B.

    My Mom has recently been diagnosed with Lewy Body Dementia. Apparently it is not that easy to diagnose, but we are very lucky. It started when she began hearing voices and started feeling a loss of balance. She ended u[p in the hospital for a diagnosis. My Mom is a beautiful person and, at the beginning of her treatment, she struggles to play games with me (she beat me at Yahtzee twice yesterday) as she tries to distinguish the reality from what is going on in her head. She is suffering; love, hug, and inspire these people as they struggle with visual and auditory hallucinations and other symptoms every day. Medication is tricky. Physical therapy is needed, as well as counseling for the myriad of memories, feelings, and confusion that these patients suffer. I surround my Mom with love and inspire her own courage. It is sad but so much better with the correct diagnosis.

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