In late October 2024, the Lewy Body Dementia Association (lbda.org) hosted a live question-and-answer session with Dr. Chiadi Onyike on the challenges related to psychiatric symptoms in Lewy body dementia (LBD). Dr. Onyike, a neuropsychiatrist with Johns Hopkins, did not give a presentation; the webinar was entirely Q&A. Questions were asked about denial, hallucinations, inappropriate sexual behavior, non-medication approaches, and “prodromal” symptoms (which can occur decades before other “obviously LBD” symptoms).
Some resources mentioned in the webinar are:
DIAMOND Lewy™ Management Toolkit: provides a medication guide and other helpful information for managing LBD.
Brain Support Network has a list of top LBD resources:
Top LBD Resources
The topic of mixed pathology came up during the Q&A. Many people have both Lewy body dementia and Azheimer’s Disease! To receive a confirmed diagnosis, please consider brain donation for your LBD family member and even yourself!
Brain Support Network Brain Donation Information
Elizabeth Wong, on behalf of Stanford’s Parkinson’s Community Outreach program, attended the Q&A session and took notes. She also provided this interesting summary, with some practical tips from Dr. Onyike:
Denial of illness is common in LBD due to impaired self-awareness. Focus on redirection and practical solutions, not arguments. For example: If someone is packing bags to go to work, try to distract them with a walk, drive, or conversation, and when they come back they have “returned from work.”
Emotional & personality changes can occur, including apathy, anxiety, and depression; however these symptoms are often overshadowed by more prominent LBD symptoms such as problems with memory, cognition and hallucinations. Depression, apathy, and anxiety can be prodromal symptoms. (Prodromal symptoms are symptoms that come before the more obvious, diagnosable symptoms of an illness or disease.)
Hallucinations are a hallmark of LBD, they are often visual and vivid. In the beginning when an individual has more insight, they may rely on the caregiver to help orient them to reality. Caregiver’s response to hallucinations can be empathic listening (“I know you are seeing this, but I cannot”), distraction, reassurance, and avoiding arguing about reality.
Inappropriate sexual behavior is common. Human touch is something we never lose the need for. Dr. Onyike studied inappropriate sexual behaviors of residents with dementia at assisted living and memory care facilities. He found two types of inappropriate sexual behavior. First, affiliative behavior, where the individual does not realize they are in a relationship that others, such as their spouse or family member, may not approve. Second, offensive behavior that could be groping, making propositions, or following people around. Behaviors can be addressed with SSRIs [a type of antidepressant], but careful monitoring is needed.
Non-medication approaches to managing psychiatric symptoms in Lewy body dementia include the importance of careful observation and creative problem-solving in dementia care. Formalized methods such as DICE (Describe, Investigate, Create, and Evaluate) or ABC (Antecedent, Behavior, Consequence) can help caregivers understand and modify behavioral triggers.
For example, an man with LBD at a facility attacked staff 2 nights in a row after the staff tried to stop him from urinating in the hallway. The staff investigated the behavior. They found that he would go straight to bed after eating, he would wake up in the middle of the night, see the light in the hallway outside his room, walk toward the light and start peeing. The modifications to the behavior and environment included toileting after dinner, having staff check in on him after he fell asleep, staff turning the light on in the bathroom of his room, leaving the bathroom door inside his room ajar with the light on, and closing the bedroom door to the hallway. These changes stopped the action of him voiding in the hallway.
General anesthesia can be problematic for individuals with LBD. Have a discussion with the surgical team to discuss potential issues with certain medications prior to surgery (such as atropine for eye surgery). Ensure the postoperative care team is aware that a person with LBD may be more confused. Prompt resumption of medication and pain management post op are essential.
Panic attacks and anxiety can be triggered by changes in the environment. Safety measures when driving someone with LBD can include (child locks, backseat seating) and calming techniques (eye mask, music).
A recording of this webinar is on the LBDA Youtube channel.
Elizabeth’s full notes are below.
Unpacking Psychiatric Symptoms in Lewy Body Dementia: Live Q&A
Speaker: Chiadi Onyike, MD, neuropsychiatrist, Johns Hopkins University
Webinar Host: Lewy Body Dementia Association
Webinar Date: October 30, 2024
Summary by: Elizabeth Wong, Stanford Parkinson’s Community Outreach
Q: [Carepartner question] What should I do when a loved one denies the need for help with things? Do you have any advice?
A: This is a common problem across all different dementias. Typically, the people who have this condition do not know they have the condition. The capacity to monitor oneself and the ability to update one’s sense of self with present day information is impaired in most people with dementia. We go about our daily business and we often have a sense of how we did in relation to the task, but in Lewy body dementia, the self monitoring function and capacity to watch oneself in action and ability to make that assessment is impaired. In this case, explaining is overrated.
There is a distinction to be made between “having your say and having your way.” It is important to remember to let people living with this condition say what they say and believe what they believe but also find a way to get them to do a task. This is easier said than done. For example, for someone packing bags to go to work, one intervention could be to drive or walk around the block, chat with them along the way to distract them, and when you return, they have “gone to work and then come back.”
Trying to convince someone with dementia that they don’t have dementia if they don’t see does not work. It is respectful to the person to explain to them at the beginning that this is what we are seeing, this is what the doctors have said, this is the diagnosis and these are the treatments, but after you have done that, repeating it over and over again is generally not helpful and often leads to conflict. Things like distraction, making a request and framing it in a way of “I need your help” or “I would like you to do this so that we can do that” with “that” being a pleasant activity can be helpful. Those are ways we recommend people getting through denial of symptoms.
Q: [Person with symptoms of LBD] Are personality changes or changes in recognition of emotion common symptoms for someone with LBD?
A: Yes, they are common. They are not as emphasized because they are not as dramatic as the things that lead people to seek out diagnosis such as being forgetful, having hallucinations or parkinsonism. Especially if hallucinations are accompanied by delusions, paranoia, or fear and delusions, those things tend to dominate the story. The symptoms that are emphasized are the loudest and are most relevant to diagnosis, but there are a plethora of other symptoms that come along that make life difficult, and problems with emotion recognition is one of them.
Additionally, it depends on how early people go from being well to being diagnosed, there is a period in between where they notice something has changed but nonspecific. A lot of times, it’s these nonspecific symptoms and not necessarily the signature symptoms of LBD that are the common reason diagnosis can be delayed or misdirected, people get treated for depression because they have trouble with emotions.
Q: Do you sometimes see a loss of empathy in people with Lew body dementia?
A: Yes, in order to have empathy you have to have the capacity for perspective taking and to put yourself in another person’s shoes or experience. You must be able to mirror that experience to something similar in your life. For example if you have been bereaved before, you have a deeper understanding of someone else’s bereavement. If you have cognitive impairment, the ability to perceive and reflect from your past experiences is impaired. The majority of people with advanced LBD will have a lack of empathy. In the beginning lack of empathy is less common but can occur. The lack of empathy might also occur because they lack attention, they are not as attentive to what is happening to other people and that can result in a lack of empathy, so it can be difficult to tease out and differentiate.
Q: For someone who is prodromal (they don’t have a diagnosis yet, but they think they may have symptoms), what psychiatric symptoms are common?
A: REM sleep disorder is a one prodromal symptom, it is not specific to LBD, but REM sleep disease is more common in LBD than it would be in Alzheimer’s. Usually when a person is dreaming they are not acting out their dream. Sometimes as early as 10 years prior to diagnosis of LBD, people can have REM sleep disorder and can be acting out their dreams either verbally and/or physically.
Over 50% have depression and/or anxiety present in the prodromal period. In today’s world, if it looks like depression then providers will approach it as depression and will treat it as such and will not know until years down the line, sometimes as long as 10 years when symptoms like hallucinations or parkinsonism develop.
Apathy can also be a prodromal symptom, where people become less industrious, lacking in energy and vitality, but it is usually not that pronounced and sometimes people brush it off as not liking something, not liking their job, or caused by changes as nearing retirement, and then they find that their symptoms develop from there.
Q: When do hallucinations start?
A: It varies widely. It can occur during the prodromal period, it can occur in people who already have depression and be interpreted as manifestation of depression, or it can occur after a medication is prescribed. Hallucinations can occur early, and it can be fleeting and come and go until it becomes established.
We also hear of things that are not quite hallucinations, where people sense that something is in the corner, or they see objects within objects, and people think that maybe they just didn’t take a good look or maybe they were sleepy. They do not think of it as anything, until after diagnosis and they are looking back and realize in hindsight that it was a symptom. There are people who have visual hallucinations when waking up or falling asleep, or they would wake up and not be sure if it was a dream or if it was real, and these can become more common, prominent and vivid with disease progression.
Q: Are there certain tests that can help confirm the diagnosis or explain symptoms?
A: The most important element is suspicion. If there is REM sleep behavior disorder, if there are tremors that are coming and going, if they tried a neuroleptic and they got more confused than expected then suspect LBD. [Editor note: a neuroleptic medication in this example would be medication used to treat psychiatric symptoms like haloperidol or risperidone.]
There are tests today that we can do such as skin biopsy and spinal fluid analysis that in the prodromal stage is. The spinal fluid analysis being more sensitive and the skin biopsy test being less sensitive during the prodromal stage so if there is a negative test during the prodromal period, there could be value to repeat it again later if there is sufficient suspicion.
Q: The spinal fluid and skin biopsy tests are looking at the presence of synuclein, but the test would not necessarily tell if someone has Parkinson’s disease or Lewy body disease. What other factors would be needed to tease the results of Parkinson’s disease and dementia of Lewy body?
A: Look at the clinical symptoms. With Parkinson’s disease generally the manifestation would be in movement and that would be the case for 10 years. There are some people with PD where those symptoms accelerate faster or are complicated relatively early by cognitive problems. But in general, they are not going to have hallucinations or overt cognitive problems until in the advanced stages.
However, with dementia of Lewy body, at the time of diagnosis we would expect cognitive problems in the form of executive dysfunction and memory loss, disorientation, and accompanied by visual hallucinations and overt parkinsonism.
Multiple system atrophy which is very rare has a varied presentation that would include ataxia, walking like intoxication on top of cognitive dysfunction and parkinsonism, but it is very rare. Those are the main competitors and based on clinical symptoms diagnosis can be determined.
Q: My sister has LBD and she had issues with improper medications being given like ZoloftⓇ or HaldolⓇ. I am wondering if improper medication can lead to rapid disease progression?
A: Some people can have more rapid progression. A more rapid progression does not usually translate to a broader sensitivity to medications or a higher sensitivity to medicines. More likely the person is sensitive to specific medicines and maybe not so much to others. There are people who are otherwise normal and sensitive to meds and if LBD came along later, it can complicate things and make a treatment experience more difficult.
When people are in the hospital, providers are moving quickly, prescribing quickly they often prescribe more than one medication at the same time. In hospitals, providers have a shorter window of time, and they can take more risk because the patients are being observed. The consequence of this is that it can make determining medication sensitivities more murky.
Ideally outside the hospital, providers tell patients to try a certain medication for weeks before adding another one.
Q: If someone experiences changes and decline due to a medication, can those changes be reversed once they are off the medication or is the decline permanent?
A: A decline can persist for a long time, but it would not be considered permanent. The change can be dramatic and severe. Particularly if a person is prescribed medications that do that same thing such as getting prescribed HaldolⓇ and then they get RisperdalⓇ which do the cause the same problems because they work on the same receptors, the difficulty is extended.
The neuroleptic sensitivity syndrome which causes confusion and agitation is not recognized as what it is, but instead it is recognized as more agitation that in turn engenders more prescribing. Sometimes we recommend stopping those medications, letting the medicines wash out, and see what we have to work with.
Moderator comment: LBDA has a medical alert wallet card so you can have it to quickly inform medical professionals of important medical sensitivities in LBD.
Q: The person with LBD has begun to exhibit inappropriate sexual behavior (such as lewd comments and touching) in the assisted living/memory care community, which is very out of the normal behavior for this person. The person is currently taking AriceptⓇ. How can the family or community address this?
A: A number of years ago, we studied improper sexual behaviors in assisted living/ residential care facilities. There are two kinds of improper sexual behavior in dementia: affiliative behavior and offensive behavior.
For someone with dementia who is far enough along to be in assisted living, affiliative behavior would be someone not realizing that they are in a relationship that others may not approve of. It would be the tendency to sit with the same person, walk with someone holding hands, every now and then being caught in bed or kissing and wanting to be with each other’s company, and if someone tries to separate them, it would lead to conflict.
Offensive behavior would be behavior such as groping, making propositions, or following people around, they may target the same people like staff or another resident.
We found that the medication that offered the best prospect to dial down the behavior was the SSRIs like SertralineⓇ, ZoloftⓇ, PaxilⓇ, ProzacⓇ. In one memorable case where SSRI was prescribed, he became apathetic, stayed in bed, we dialed it down, stopped it but he resumed his mischief, so the family had to make a tradeoff to determine to be apathetic rather than exhibit the offensive behavior. The more common outcome is to have them on SSRI and behavior goes away without having them be apathetic. If trying antipsychotic medications, have to be careful due to sensitivity and neuroleptic crisis, which is a rare and life-threatening reaction to the use of almost any kind of neuroleptic (antipsychotic) medication that causes a high fever and muscle stiffness. In the immediate period with offensive behavior they have to put them on close supervision to prevent them from acting out.
Moderator comment: Human touch is something we never lose the need for.
Q: I am hearing impaired. Is there a correlation or relationship between being severely hearing impaired and having auditory hallucinations?
A: In general, there is no correlation with severe hearing impairment and hallucinations. Some people who have sensory deprivation at times will have hallucinations, typically this happens when there is residual functioning and the ears and eyes may play on stimuli but they don’t have sufficient functioning to make it out properly. This is especially true with sounds. Soft sounds in the environment can sound like whispers and take on malicious connotations that cause secondary delusions. The vast majority of people with LBD do not have auditory hallucinations and will go away when treated. The hearing impairment is coincidental. Usually people visual hallucinations. Auditory hallucinations are not typical.
Q: How should carepartners and family respond when asked to interact with hallucinations?
A: Arguing that hallucinations are not real usually will not help. If that person has insight and is relying on you to orient them to reality, it can be helpful to point out and remind them they have LBD and that is a hallucination. However, for the majority of people, listening with an empathic ear, understanding that the hallucination is real to them, saying things like “I know you are seeing this but I cannot see it” of “lets try to ignore it” can help sometimes.
You can try to distract them which is easier to do in advanced stages, but if it is relatively early, in diagnosis, provide reassurance, tell them you know they can see it, but you cannot, you can blame the illness, illness is the bully, suggest pleasant activity.
Moderator comment: There was a patient with auditory hallucinations who loved Fleetwood Mac, and he would put on headphones when his auditory hallucinations would start to ease symptoms.
Q: Are there any medications that can be used for both anxiety and insomnia?
A: In general with LBD, prescribing cholinesterase inhibitors helps with a variety of behavioral problems and cognition. This is generally the first line. It can help with hallucinations, anxiety, delusions, and sleep disturbances. However, people may already be on it and they still have those symptoms.
Low dose mirtazapine (RemeronⓇ) can help with sleep. Understanding the root of the problem could help determine what treatments to try first, for example, is a sleep disturbance leading to anxiety, or is anxiety causing rumination and difficulty sleeping. Sometimes low dose quetiapine (SeroquelⓇ) could be helpful. If you can’t tell which came first, anxiety or sleep disturbance, either mirtazapine or quetiapine would be a good starting point.
Q: Are there differences in psychiatric symptoms in LBD and other dementias?
A: Yes. There are no differences in depression, anxiety, and apathy. There are differences with hallucinations and delusions.
First difference is in timing. For Alzheimer’s, people won’t have hallucinations or delusions until fairly advanced in illness and the hallucinations can be visual or auditory. For LBD, they will typically have hallucinations and delusions early on, and the hallucinations are usually almost always formed visual (object, people, complex scenes, animals).
People with LBD can see duplicates of things, such as duplicates of spouse, person in front of them is imposter. This duplication can be seen in Alzheimer’s too but much later on.
Pareidolia, seeing objects in objects, such as face in curtains, or animal head in lampside will generally only be seen in LBD or PD.
Delusion of presence, such as being convinced that someone is in their home even if they don’t see them, is also quite common and early in LBD. In LBD the description and details are rich, they often have a whole story with lots of characters. In Alzheimer’s the delusions are simple: food being poison or someone stole my wallet.
Q: When someone sees a duplicate in their house, how should a caregiver/loved one handle that?
A: That is a tough one, logic seems not to apply. It is hard to get them to accept this. There are parts of the brain that have to do with familiarity and spatial locations. Trying to debate with the individual is not helpful because those biological regions that have to do familiarity, spatial location and logic are impaired. Interventions could include providing reassurance, letting them know they are safe, using touch, and could take some creativity such as going for a ride and then coming home. For example, for someone who is convinced they are not home when they are in their house, it may take leaving the house and coming back for them to acknowledge they are at home now. There are medications that can be prescribed, but it could take trial and error.
Q: What is the difference between illusion and hallucination?
A: A hallucination is something specific and real that the person is experiencing and they can provide a description. An illusion is not vivid and it may be grafted on another object, they can think they see something like a face in a curtain, but when they look more closely, it’s not really there, they can get corrected by scrutinizing or being prompted to scrutinize.
Q: Could psychotherapy help someone with LBD?
A: Psychotherapy is a broad term. For the purpose of helping someone cope with illness and to see that life can be lived even under difficult circumstances, especially if someone has insight and can draw from specific memory or if psychotherapy is focused on the present, then it can be useful. However, if psychotherapy is trying to get them to go back to a previous point in their life and reflect, then that may be more difficult if they have LBD.
Additionally, the target of psychotherapy may not be just for a person with illness, it can be for two people together such as caregiver and person with illness. Psychotherapy can help people work together to improve communication with each other to make caregiving more effective. The target of psychotherapy can also be coping for a caregiver.
When getting into more behavioral issues, there was an individual with frontotemporal dementia who would rock cars to check car suspensions and set off car alarms in their neighborhood which caused uproar. When looking at that behavior to try to get them not to do something the intervention that worked was to tell the patient that their method of checking suspension was crude and gave them “checklist” of things to so to check suspension without touching another person’s, for example, get down low and look at tired, then walk around car and look at other tire, etc. The person still had the compulsion to inspect suspension but he is no longer rocking the car. This behavior therapy can be part of psychotherapy and it helps with compulsion.
Q: Person with LBD experienced worsening psychosis as a result of RexultiⓇ (brexpiprazole). What would be a safer alternative to this drug?
A: RexultiⓇ is neuroleptic related to AbilifyⓇ (aripiprazole). These are medications designed for schizophrenia or bipolar disorder. They cause the same problem as HaldolⓇ (haloperidol) but they just do it gradually, so it may seem like they are calm, but 6 weeks later they are stiff and confused. It is long acting and difficult to reverse, so we do not use them, they are on the DO NOT prescribe list for LBD.
The Diamond Lewy™ management tool kit (https://www.lbda.org/diamond-lewy/) has a list of medications that are recommended for people with LBD. Clozapine (ClozarilⓇ) is difficult to use but safe for DLB; it is difficult to use because of regulatory burden because of its effect on blood cells. Quetiapine (SeroquelⓇ ) is safe. If not quetiapine, pimavanserin (NuplazidⓇ) is the next best thing.
Q: Is sundowning common?
A: Sundowning is confusion that comes on later on in the day that makes a person seem worse in the afternoon. Having better sleep helps. At the time of sundowning is reassurance and reorientation general should suffice. Speak in a calm voice, using touch in the right way and showing that you care. Occasionally if complicated by agitation there may be need to prescribe something but in general reorientation and reassurance should suffice.
Q: Are there any non drug approaches for psychiatric symptoms?
A: Reassurance, use of touch, using distraction, and avoiding debate. In the example earlier of a person setting off the car alarms, there was a more way to redirect dysfunctional behavior in a way to make it less annoying.
There are more formalized approaches such as the DICE (Describe, Investigate, Create, and Evaluate) method or the ABC (Antecedent, Behavior, Consequence) model where you analyze behavior, realize what came before, what happened, and how that became a problem. By understanding that process, you can see the environmental contributors to the problem and take them away. Often the person living with the condition when being agitated, they may be reacting appropriately but it’s because they misinterpreted the environment or what is happening, and if you understand that you can alter the environment/interaction. Good activity throughout the day so they are not falling asleep in front of the TV during the day, and good sleep at night is also important..
For example, there was an individual who attacked two nurses when he was voiding in the hallway in the middle of the night after he got up from sleep and he had done that the week before. When interrogating the problem, it turned out he would go to the bathroom after dinner, he would wake up in the middle of the night, see the light on outside his door in the hall, walk towards the light and start voiding in the hall despite having a bathroom in his room. The intervention was to have the patient void after dinner, check on him after he was asleep, turn on the light to his bathroom in his room and open that door, close the door to the hallway.
Q: Is general anesthesia always problematic for people with LBD?
A: It can be. It depends on what anesthetic agents are used. For example, atropine used to dilate the eye for surgery can cause serious confusion, agitation and fear. It’s important to have prior discussion with surgeons and anesthesia. If there will be post operative care where confusion is to be expected, let postoperative folks know to restart meds right away when they can, and to make sure pain control is properly addressed. It’s important to warn the post operative team that they can be more confused than the normal patient. People with LBD generally do ok even if they are more confused in the postoperative period.
Q: My husband just had two very bad panic attacks and tried to get out of the moving car. Is that common with LBD?
A: It’s not common, but it’s not unheard of. If a person has dementia, recommend that they sit in the back so they don’t interfere with the steering wheel and so you can use a child lock in the back. Sometimes, they can misinterpret when a car is stopped in traffic as to the car being stopped and it being ready to get out of the car, so having them in the back with the child door lock enabled could be helpful. A person can also have anxiety caused by changing scenery as it can be discombobulating.
Moderator comment: There was a patient with LBD who had severe visuospatial issues and she was convinced that everyone was going to hit their car when she would be a passenger in a car. But the patient got around that by putting on an eye mask and putting on music/headphones while being in a car.
Q: A person was diagnosed with Alzheimer’s in 2020 and now diagnosed with co-pathology of LBD in 2023. Are they having hallucinations and delusions or is it Alzheimer’s?
A: Hard to tell in this context. Co-pathology is quite common in older people in their 70s or 80s. There can be reason to suspect co-pathology with LBD if someone with Alzheimer’s develops hallucinations or parkinsonism earlier than expected. You can see co-pathology in post mortem brain studies/pathology. Researchers currently have the ability to image amyloid and tau in the brain, and we may not be that far off from being able to detect synuclein in the brain while alive, and when that happens, researchers can do studies on looking at when co-pathologies occur.