If your loved one is among the 1.4 million Americans living with Lewy Body Dementia (LBD), you may be surprised to learn that many common antipsychotic medications can cause severe side effects. This is even more important to be aware of if your loved one hasn’t yet received a Lewy Body Dementia diagnosis. Since LBD is often challenging to diagnose, many individuals with the condition are misdiagnosed in the early stages and given medications that cause adverse effects. Here, we share more about how antipsychotic medications affect those with LBD and what to look out for:
Why Individuals With LBD Are Prescribed Antipsychotics
Receiving an accurate diagnosis is crucial in the management of LBD. Because LBD symptoms are often similar to other diseases (such as Parkinson’s disease, Alzheimer’s, or a psychiatric disorder), medical professionals may mistakenly prescribe medications that are meant to treat other conditions.
In particular, per the Cleveland Clinic, traditional or typical antipsychotics including thioridazine, haloperidol, chlorpromazine, and perphenazine are known for causing problems in individuals with LBD. When people with LBD are given these medications, they may have a worsening of cognitive symptoms and movement problems. In some cases, a dangerous condition called neuroleptic malignant syndrome may occur. Symptoms associated with this syndrome can be life threatening and include muscle rigidity, fluctuating blood pressure, high fever, irregular heartbeat, and confusion.
Although older classes of antipsychotics often cause severe problems in those with LBD, newer antipsychotic medications are sometimes used successfully to treat visual hallucinations and behavioral changes. Medications such as pimavanserin, quetiapine, and clozapine can be used to treat visual hallucinations and behavioral changes. However, since individuals with LBD are often sensitive to many medications (including antidepressants or sedatives), it’s essential to diligently monitor them for side effects. You’ll need to work closely with a neurologist, geriatrician, or geriatric psychiatrist who has experience with LBD.
If you’ve noticed that your loved one is exhibiting symptoms of LBD, it’s important to determine or rule out a Lewy Body Dementia diagnosis. An accurate diagnosis is crucial in managing the symptoms and prescribing appropriate medications. Unfortunately, many healthcare practitioners lack experience with LBD and receiving a diagnosis often takes years. If you’d like to advocate for your loved one or have any questions regarding how to find the right medical team or resources, we are here to help. We’re available seven days per week at 833-LBDLINE and via email. We understand how challenging this journey can be, and we’re here to provide guidance or a listening ear whenever you need us.
I am a 70 year old widow, living with my family since my husband died almost 9 years ago. During this trial I have had numbness attacks of my left face and left side which eventually happening on the right side of my face. I also chill and feel like I have the flu with bee stings-like burning in my tissues, but not in my joints. I have been fatigued and had to miss family gatherings and events. I always have a sadness attack when my right face is involved. This has been occurring daily since January 14, 2013. Now these are my symptoms in addition to the numbness attacks: short term memory impairment, amnesia, confusion, speech difficult including work finding and speaking. I have times of halting speech and suddenly forgetting what I was trying to say. I can however write.I cannot problem solve, do simple math or abstract thinking. I am aware that I say inappropriate things by others’ reactions and dropping friendships. It is overwhelming and too stressful to attend social gatherings where small talk is the normal. I have vivid dreams and wake up thinking the dream is real life and I am in it. I find myself talking outloud to the person in my dream. Over 4 years ago I began having visual hallucinations especially at night. I see people, babies, animals and sometimes small cartoon like little people and moving pictures on my walls that fold over and fold in and return to normal. All of these cognitive and psychotic type hallucinations are fluctuating. I also have delusional thinking in which I am terrified that my family members are mad at me or afraid of me. I am a grandmother of 15 children. This past 9 years since my husband died has not been content and joyful because of my illness. My personality is loving and gentle and kind. I have had anxiety and depression since divorcing my first husband at age 43 and having 5 children, 3 teenagers and 2 young adults. My children are successful and have families of their own now. They are very supportive. However, I so need a diagnosis of Lewy Body Dementia, if that is what I have, because my illness is taxing and depressing for them and myself. I have been misunderstood most of the time because of my fluctuating symptoms. I have not been believed. I have been thought to have a mental illness. I was tested by a neuropsychologist for dementia and given a diagnosis of mild cognititve impairment and told I needed counseling for anxiety and excessive worry and needed to learn how to deal with fears. My goodness, I was a registered nurse who went to college after having 5 babies. I sewed all the family clothing, raised gardens and canned fruit and vegetables while working part time as a janitor with my first husband. I live with my only daughter who is also an RN. My sons are also supportive. All of the husbands and wives work full time. I no longer dirive after causing a car accident 4 years ago because of inattention. All brain MRIs have been negative. Also EEGs
Dear Jonilyn,
We would like to try to help you find a movement disorder neurologist in your area. Please let us know where you are located.
Dear Jonilyn, Your story of being told you have a mild cognitive impairment , have a mental illness, and given course after course of anti-depreesants and anti- anxiety medications and essentially that you are imagining or exaggerating symptoms is sadly, pretty similar to my experiences over the last 3+ years. Although, I do not have every symptom you have, many of them are the same and prior to my diagnosis in October of 2020, I was in the very depths of despair. Correct diagnosis, which by the way was clinical, as my PET scan also was normal, was the beginning of accessing the right medications, which for me have given me a vast improvement in my quality of life. Along with participating in support groups, my apathy and depression have all but disappeared, which has enabled me to “rejoin the living” and allowed me to get back on a path to wellness through volunteering, social interaction, art therapy, physical activities and much more. I wish you all the best and encourage you not to give up in your search for correct diagnosis, as I believe it is critical to your future treatment of your symptoms. , With the help of your supportive family, you have no time to hesitate on this matter. Please respond to the offer of help from the Resource Center and let me know if there is anything I can do to help as well.
Dear Lewy Body Dementia resource professionals,
I just found your response tonight by accident. I am ecstatic! In my confusion and amnesia, I had lost your website until tonight. When I researched the mission of the Movement Disorder clinic at St. Luke’s in Boise, Idaho, I was overwhelmed. My hope was to get a clinical diagnosis and then a simple plan of care for me and my family. I am 70 and have had cognitive decline and some Parkinsons-like symptoms for at least 8 and 1/2 years and possibly more. I especially would like a diagnosis so that my family and I understand what I have and what future options for are. I do not expect a cure, just support for me and my family. Also, I have already had many MRIs of the brain and other tests. I am on Medicare and have no funds. I would like someone to explain to my family what I have. I would like my family to have access to information, so they would know what is wrong with grandma. I would like to make a plan of care for the future care of me, so that my daughter’s health is not compromised. She has already had me living in her home for a total of over 5 years, as well as helping me at doctors and labs and x-rays. My address is 17699 Northside Blvd. Nampa, Idaho 83687. My date of birth is 12/17/1950. Thank you most sincerely, Jonilyn Barrett
Please know your family can read all about LBD on our website at http://www.lewybodyresourcecenter.org or call our Helpline at 833-LBDLINE seven days a week.
Dear Lewy Body Resource Professionals,
Oh my goodness! I just found your response tonight. I will show this to my daughter this weekend. My daughter is an RN and her daughter, my granddaughter, is a new RN. I am so blessed. I lost my connection to the response from Norma Loeb In April of this year because of confusion using the computer. My initial reaction to the advice to go to a movement specialist was discouragement. When I researched the St. Luke’s Movement Center’s philosophy of care, here in Boise, Idaho, I felt it was more for a younger patients raising a family and working and needing help to continue with their busy lives Since I am on Medicare and have declined in cognitive ability, I felt the program was more than I really needed or could afford. My daughter and son were supportive with my decision. I recently found your website again and was browsing your information tonight, especially the bios of the board members and how each of you are knowledgeable about Lewy Body Dementia. Now, seeing Susan Lavoice’s repsonse, I feel some hope. Hopefully the Movement Disorder Clinic would accept that I am 70 and have already declined cognitively and progressed with Parkinson-like symptoms and would help me with a diagnosis and a simple plan of care. This would help all of my 5 children and their children to understand “what is wrong with grandma”. Also, I desperately need a diagnosis so my children can learn the options of care. Also, I am very concerned with the continued stress of my care on my daughter. She has already had me in her home for over five years and has been involved in my appointments of various doctors and MRIs of the brain. I would like to make a plan of care for the future, so that my transitioning to a care center would be smooth and less stressful for my family when that time comes. I would love to have a diagnosis. That would be my prize ticket for access to guidance and education for my family. Thank you so very much. I am totally open to you using my story if I get the diagnosis. Sincerely, Jonilyn Barrett
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