How Lewy Body Dementia Contributes to Depression and Hallucinations

The tragic death of actor Robin Williams left many confused, wondering what could cause one of the greatest men in Hollywood to take his own life in 2014. A pathology report recently revealed, however, that prior to his death, Williams had suffered from diffuse Lewy Body dementia.How Lewy Body Dementia Contributes to Depression and Hallucinations

Read more about Lewy Body dementia and the effects it can have on people living with the disease.

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

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.”

Lewy Body Dementia and Inappropriate Antipsychotic Prescriptions

Recently, Professor Clive Ballard, a leading researcher of LBD at the University of Exeter, added to the growing evidence that inappropriate medications and prescriptions can negatively impact people suffering from LBD, stating:

“Antipsychotic drugs given to dementia sufferers to treat behavioral disturbances has been found to increase the risk of death for people with Lewy body dementia fourfold, compared to one and a half times in people with Alzheimer’s disease.”

Ballard continued, “When people have these reactions they develop very severe Parkinson’s symptoms and become very confused… Even if people do not die as a result of the syndrome, they may experience a steep decline in their condition which they usually do not recover from.”

He also stressed the importance of an early diagnosis , which can assist with some behavioral disturbances in those with the disease.

Do you have any personal experience with Lewy Body dementia? What sort of symptoms has it caused you or a loved one? We’d like ot hear your LBD stories 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.

  • jamie

    I was diagnosed of Parkinson’s disease following a neurological examination and other series of tests, my symptoms first appeared in February 2014 tremor in both limbs, rigid muscle, impaired posture.. all medication prescribed were not working and i sadly took off from my job, being a single mother with two kids it was almost a hopeless situation. In September 2016, i read about NewLife herbal clinic in a health forum, this herbal clinic have successful parkinson’s disease herbal treatment and treatment for other list of terminal diseases, i contacted the herbal clinic via their website and purchased the parkinson’s disease herbal remedy. I received the parkinson’s disease herbal remedy via courier and immediately commenced usage. I used the remedy for 7 weeks, all my symptoms including trremor gradually dissapeared till i almost forgot i had the disease, i have started working again, thanks to NewLife herbal clinic. Visit www. newlifeherbalclinic. weebly. com or email newlifeherbalclinic @ gmail . com. Parkinson’s disease is not a death sentence, don’t die believing there is no cure, its a final breakthrough for all living with parkinson’s disease

  • Elaine Ruiz

    I was diagnosed with Lewy Body Dementia in 2008. The doctor at the time saw symptoms in me that led them to believe that I had LBD. I actually was having hallucinations that were stationary to a wall and never moved. I predominately had a little girl who was constant. I also had most of the other symptoms that are present in LBD. I starting taking medication for LBD. Until last year, I took LBD medication regularly. It so happens, that my symptoms are also some of the same symptoms that are resent with fibromyalgia, generalized anxiety, panic disorder, social anxiety disorder and bipolar disorder. I was misdiagnosed with Lewy Body Dementia. I do have short term memory problems, severe mood fluctuations, severe depression, agitation, fidgety, insomnia. appetite problems, confusion, balance problems, concentration problems, an a lot of other symptoms that made the doctors, 2 neurologists and 3 primary care physicians, all agree with the Lewy Body Dementia diagnosis. Fortunately for me, it is a misdiagnosis and I can now become more of an advocate for others who have the correct diagnosis. I know how it feels to not be able to remember general common things. I know what it is like to have trouble with balance and fall all the time. I k now what it is like to be lost in a store and need help finding my way to someone who can help. I know what it is like to be so confused I can’t remember who I am or where I am or what room I am in at home. I know what it means to shake for now reason and to not hae my hands do what they need to do so I can’t even hold a pencil. I kow that I will need to use technology that allows me to speak to my computer in order to write if I can remember what I need to write. I know what it feels like to feel overwhelmed by life and to feel so overpowered that I just sit and stare out the window. I know how incapacitating it can be and how hard it is to do anything at all. I know the depths of depression that brings frustration out so much that I am angry and testy and do not want anyone around me. I understand Robin Williams so well. He will always be remembered as a great man and actor. His death does not take away from his humanity and his life and all he gave to thi world. I have thought about him many times since his death, and I look at his picture and always talk with him a minute. I wish I had known him. He made a difference in my life. He is one of the people that I truly admire and have him listed ass one of my favorite people for my website.

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  • Superb54

    Anyone diagnosed with a terminal illness struggles with some form of depression. Hullucinations is one of the symptoms of Lewy Body and a few other types of dementia. A diagnosis of dementia is a crippling blow, as people tend to stay away in the same way they do when they hear someone has cancer. The person feels isolated, misunderstood, alienated, and even abondoned by acquaintances and loved ones. They feel totally alone. In order to combat depression, interactions with others is essential, along with trying to get the person out of the house to enjoy, sun, fresh air and activities. If the person is in assisted living or a nursing home, they are already dealing with some form of depression. It also depends on the stage the person is in.beginning stages are extremely difficult due to the fact that the person can still process anticipated memory loss, behavioral and physical changes of what’s to come.

  • Jen

    My grandfather passed nearly 25 years ago. Though he never received the correct testing/diagnosis prior to his death, his symptoms were exact for Lewy Body Dementia. It was a tragic end. His doctor put him on an anti psychotic called Haldol and he was dead in less than 2 months. He lost the ability to eat and swallow shortly after taking this med and developed a severe worsening of symptoms. There’s no way to know for certain how many years he would have lived had he not taken this drug that he had such a sensitivity to. However, had he not taken it we certainly would not have had to watch him suffer while slowly starving to death. My family and I would advise anyone caring for a loved one with this difficult disease to thoroughly research the effects of psychotropic drugs because they can be deadly. My heart still aches for my grandpa. I’m posting this info. with the hope that no other person has to lose a loved one in this way.

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