Dr. James Beck 00:00:00
Hello everyone, and welcome to our expert briefings. I'm Dr. James Beck, Chief Scientific Officer of the Parkinson's Foundation. Our expert briefing today will be focused on hallucinations and delusions in Parkinson's. Psychosis is a medical term and can be a frightening word. In Parkinson's disease, we're often talking about visual hallucinations, which can range from a minor misperception of something that is not there in our peripheral vision to complex, detailed phenomena, seeing things that aren't there. Sometimes psychosis can include believing things that are simply not true, despite evidence to the contrary. These are called delusions. Today, we'll learn what might cause these symptoms, how people with Parkinson's might experience them, and explore some management strategies to control them.
Before we begin, I'd like to share a little bit about the Parkinson's Foundation. The Parkinson's Foundation is a non-profit focused on bettering the lives of those living with Parkinson's through improved care and advancing research. Importantly, everything we do is done in close concert with our community, you, our viewers, to ensure that our actions are aligned with the needs and priorities of those living with Parkinson's disease. Today's program is just one example of how we are meeting our goals.
Before we begin, I'd like to see who's listening today. We'll pop up on the screen a little poll to find out who's joining us today. If you're on Facebook Live, please respond using the comment section so we can get a sense of who's here. Are you a person with Parkinson's? Do you have a parent who has Parkinson's disease, or are you a clinician, researcher, nurse or nurse practitioner? Let us know. We'll get a sense of who's here, and we use this information not only to know who our audience is, but also so our speaker can get a sense of how to talk about what we're going to be talking about today. Not surprisingly, a lot of people with Parkinson's and their care partners are here today. Thank you for joining us, and I think we'll have a fantastic presentation today.
Before we begin, I just want to let you know that, for your convenience, we are recording today's expert briefing. The recording will be available at our website, Parkinson.org/ExpertBriefings. We'll also be emailing a link to the recording and other resources for today's topic to everyone who's already registered for today's briefing. If you've registered, fear not, it will come in your email, and you don't have to hunt around to try to find it. Next, I'd like to introduce our expert presenter, Dr. Megan Gomez.
Dr. Gomez is a staff psychologist at the Tibor Rubin VA Medical Center in Long Beach, California, since 2015. At the Long Beach VA, Dr. Gomez provides psychological assessment and treatment interventions for veterans enrolled in the home-based primary care program. She works primarily with veterans over the age of 65 who have chronic and complex medical and psychological conditions. She also provides psychology support to family caregivers. She's also on the board of advisors for the Parkinson's Foundation California Chapter.
Dr. Gomez, welcome, and thank you for sharing your time and knowledge with us today.
Dr. Megan Gomez 00:02:58
Thank you so much. I'm so happy to be here. I am going to go ahead and share my screen.
All right. Great. Let's go ahead and get started. First thing that I wanted to say is I don't have any financial disclosures to report, and I'm a psychologist, so a lot of what I'll be talking about today will be from a psychologist's perspective. I won't be speaking so much to medication, as that's outside my scope, but what I will be talking to you about is what I see day in and day out from the patients that I work with and their families, as well as my own personal experience, as my grandfather had Parkinson's.
Learning objectives for today: one, to understand what Parkinson's-related psychosis is, with particular attention to hallucinations and delusions; second, to learn how people with Parkinson's and their care partners may be impacted; and then finally, we'll review strategies for coping and potential medical treatments for troublesome hallucinations or delusions.
An outline for today: I want to just briefly touch upon non-motor symptoms of Parkinson's and then Parkinson's-related psychosis, focusing on hallucinations and delusions, the impact on people with Parkinson's and their care partners, and then some strategies for coping and potential treatments.
Of course, we all know what Parkinson's disease looks like, those visible symptoms that are evident visually, and we know that that is the tip of the iceberg, right? Those things that we can see. But we know there's a vast amount of non-motor symptoms that are associated with Parkinson's. This is where I spend a lot of my time working with patients and their families to address those invisible symptoms.
Some of these non-motor symptoms are easier to talk about, right? They have less stigma. We can talk about loss of smell. We can talk about dry eyes. We can talk about pain. Those are oftentimes easier non-motor symptoms to discuss. But there are some more sensitive and harder-to-discuss non-motor symptoms, and I think this topic of psychosis, or hallucinations and delusions, is very high on that list of things that make us uncomfortable to talk about.
Dr. Megan Gomez 00:05:47
Some possible reasons for that are fear of being judged by others, worrying about our loved ones, how they will perceive us if we share what we're experiencing, feeling self-conscious and embarrassed, feeling shame and feeling hopeless if there's anything that can be done. A lot of us tend to avoid this discussion with our medical providers, with our family, with our friends. We try to deny the symptoms. Maybe even if we're asked point blank by our doctor if we're experiencing these symptoms, we may deny it and say no, even if we do, out of that fear that we'll be labeled crazy, that they will maybe try to institutionalize us, that they're going to take away our driver's license. All sorts of fears can creep up.
A lot of us tend to isolate when we're experiencing these symptoms, and we may be very reluctant to ask for help. I just wanted to preface the talk by mentioning this because I think a lot of times we're fearful to talk about these issues.
I think it's really important to understand that this can be a part of Parkinson's. Of course, we know that people with Parkinson's are very unique. No two people with Parkinson's are the same. Everybody experiences different symptoms, responds differently to treatment, and progresses in their Parkinson's at a different rate. There are so many different factors and variables in what we're experiencing as individuals.
But I think it's really important to understand that this particular non-motor symptom can be very prevalent in Parkinson's, with the hope that if we experience it, we can identify it and relate it back to our Parkinson's disease so that we can then advocate for ourselves, right? Advocating, telling our doctors what's going on, and then we can implement the treatments that they recommend. If we keep it to ourselves, if we don't tell anyone what's going on, then we can't get support or treatment.
I'm going to talk about this spectrum of symptoms because they do vary in severity. The first one we're going to talk about is illusions or misperceptions, followed by false sense of presence, false sense of something moving past us, and then hallucinations and delusions. I also want to note that the level of insight that the person with Parkinson's has can also vary.
Earlier on, we may have insight that what we're experiencing is not really there, and sometimes we can lose that insight and feel like it really is. The first one I want to talk about is illusion or misperception. I have the image here of a coat and hat hanging, and sometimes that can be misperceived as a person. There really is something there. We are just misperceiving what it is.
Dr. Megan Gomez 00:09:19
As opposed to the next image, which is this girl in the street, our mind puts that girl there even though she's not. Sometimes when we're looking at a busy floor tile, for example, and the glare is hitting it a particular way, it can appear as though the tiles are moving, that they have become 3D, that they're moving in space. Another example of an illusion or misperception can be a hanging plant that we might have in the house, and that can be misperceived as a person with green hair, for example. Again, something really in the environment that we misperceive as something else.
Next, let's talk about the false sense of presence. I hear often from the veterans that I work with who have Parkinson's that they have to look over their shoulder, that they have this sense that someone is standing behind them, and when they look, no one is there. I've also had people explain that when they're lying in bed, they feel the sense or the presence of someone sitting at the foot of their bed. Again, if they look, sometimes it's not there, but they have that feeling that someone's in the room with them, that they're not alone.
Another occurrence is the false sense of passage. Something fleeting or moving in the periphery, and then when you look, it's gone. But it's as if in the corner of your eye, you kind of see something darting across the floor, across the wall. Sometimes people, if they have a hallway, get the sense that someone walked through the hallway. Sometimes they can think that someone is visiting them or in the house because they're getting that false sense that someone is moving by or something is moving by.
Hallucinations are perception-like experiences that occur without an external stimulus. They are vivid and clear with the full force and impact of normal perceptions and not under voluntary control.
Hallucinations can be visual. We can see people, living or deceased, or animals are very common. We can hear voices or music. We can smell certain things, like chemicals burning or gasoline, and it can also occur that we feel something on our skin. Sometimes people will feel like little bugs crawling on their skin, or they have the sensation that there's something under their skin trying to get out or that they want to remove.
Dr. Megan Gomez 00:12:17
Oftentimes people are scratching at their skin a lot because they're having these sensations. We're going to spend a lot of time talking about visual hallucinations and auditory hallucinations since these can be pretty prevalent.
Visual hallucinations: this is seeing someone sitting in your living room or at your dining table. I'll often hear from people with Parkinson's or their family that the person with Parkinson's sometimes sees someone sitting in their home that isn't really there. Sometimes it can be like a friendly presence and it's not disturbing, or sometimes they can be very distressed by it, thinking that there was an intruder in their home. There's always this spectrum, right? In terms of not distressing, not bothersome, sometimes pleasant hallucinations, and on the other end of the spectrum, it can cause a lot of upset and a lot of distress in a person.
Other common examples that I hear are seeing military boot camp in your backyard. A person will look outside and they can see a whole boot camp happening, with a drill sergeant and a bunch of service members doing jumping jacks and push-ups, and it can be very elaborate and detailed.
Sometimes they'll look outside, and maybe if they're living in a very urban area, they may see several deer in their yard. They may see different types of animals. They may see skunks walking on their fence. They may see distorted people or animals, so maybe they're odd colors that you wouldn't normally see, like red skin or blue skin, or big heads or skinny legs. Figures hovering on the ground, spiders on the wall, mice darting across the floor, and it can be as if you're dreaming when you're awake. We know that people with Parkinson's can have very vivid dreams, and sometimes it can sort of translate to these visual hallucinations when they're awake and alert.
Other common examples are small people. Sometimes they can be very tiny, maybe just this big, and they can have their own little colony with their own little land, like very little tiny fairies. Sometimes these figures can be mischievous or can be innocently behaving, like they're just playing. Sometimes it can be entertaining to watch them, or sometimes, again, it can induce fear.
Dr. Megan Gomez 00:15:07
Sometimes people can see small cats, dogs or other animals. Sometimes it's just a one-time occurrence, where they see a cat and they never see it again, or it can be a very frequent thing, where they become accustomed to seeing the cat because it appears so often that they can feel as though they've gotten to know this cat. These hallucinations can occur in isolation, very infrequently, or it can be a presence or an experience that you have very commonly and can be there quite a bit. They can be threatening or non-threatening.
It can be people that morph into animals. Sometimes it starts with a person and then it sort of morphs into an animal, and there's constantly this evolution occurring. It can be cartoon-like people or dwarf-sized people. I wanted to give these examples because I want to destigmatize what a lot of the people with Parkinson's experience, to know that they're not alone in this, to know that oftentimes it's more concerning to the patient and the family. But as a medical provider, we hear about it a lot.
For us, oftentimes we know that it can be a part of the disease or a part of the medication to treat the disease, and so I want to encourage you to talk about these things with your medical providers because we're not going to have those negative connotations about you, and our goal is to help you.
Let's talk now about some auditory hallucinations. Oftentimes people will say, when I ask them, oh, how did you sleep last night? Terribly. The neighbors were doing yard work at 2 a.m., and it kept me up all night. They're hearing the yard work, right? They're hearing the lawnmower. People down the street were having a party and playing loud music all night. You may think that there's some bumping party happening down the street. You're hearing the loud music, the DJ, the people having a good time. Someone using a drill or a chainsaw outside.
Sometimes you might hear something that sounds like people are living in the washing machine or in the walls of the house. Sometimes people will hear noise in the attic or in the basement under the house. I had one veteran who had pretty advanced Parkinson's but kept hearing sounds underneath the house. When his wife was doing something else, he was able to get into the crawl space under the house to go investigate what was going on and then got stuck there.
Dr. Megan Gomez 00:18:03
When his wife went looking for him and discovered him under there, she was like, "What are you doing under here?" I think sometimes people can be embarrassed. Sometimes they'll sort of come to and be like, "Oh, I guess it doesn't make a lot of sense that there would be people under the house," but it can be so compelling that you have to go seek it out and discover if there is actually something there. I've had people pound holes into the wall thinking that there are things living inside of the wall. Then there can be hearing people walking on the roof, thinking that there's a group of people or just one person walking on the roof, and it can be incredibly distracting to the person.
Let's talk a little bit about delusions. Delusions are fixed beliefs that are not amenable to change in light of conflicting evidence. I think this is really important for us to take note of, that even if we present contrary evidence that the delusion is not really what's happening, the person experiencing the delusion may not be convinced otherwise. It's going to really be important, when we talk about what family can do, to keep this in mind.
Some common themes that I hear in delusions and that exist in the research are what we call persecutory delusion. This is believing someone is trying to harm them, steal from them or deceive them. My grandfather had a lot of these delusions. I want to say that just because my grandfather, who had Parkinson's, had hallucinations, he would see the spiders crawling on the wall, but had insight that they weren't really there.
Dr. Megan Gomez 00:20:03
After some years and time with the disease, he started having more of the delusions. I think it's so important to share, as a family member, that I did not love my grandpa any less because of these symptoms. I didn't think he was crazy. I didn't change the respect or the adoration that I had for him. I felt bad about the distress that he would experience, and I struggled in knowing how to respond to him. But if you're a person with Parkinson's, know that your family will love you regardless of what symptoms you're experiencing.
The belief that someone is trying to harm you: sometimes people will think there's someone outside of the house trying to break in. Sometimes you will think that people are stealing from you. I had a veteran who thought that someone was going to steal their outside patio furniture. When he was not being supervised, he somehow got this super strength and moved all of the patio furniture inside the home.
Sometimes, again, these delusions or hallucinations can be so compelling. I always say it's as if they get super strength and do things and are capable physically of things that normally they wouldn't be able to do. This was heavy-duty outside furniture that he brought inside, and when his wife saw the furniture inside of the house, of course, again, why did you do that? Sometimes they'll come up with lies to explain their behavior because they're so ashamed that they're experiencing this.
The delusion that someone's deceiving you: I have veterans who have a delusion that the medical team and the family are working together and conspiring to place them in a nursing home when that's never a discussion that we've had, but they can have this delusion that people are trying to lock them up, so to speak.
Another very common delusion is the belief that your spouse is being unfaithful to you, cheating on you. Again, it can cause so much distress to feel that this might be happening. This was a delusion that my grandfather had. He was convinced that my grandma was having an affair with his paid caregiver. Anytime he could not see my grandma or the caregiver, he would believe that they were in the other room doing something together, and it was super painful for him.
There can also be the delusion that you believe a song or a TV show is speaking directly to you. Sometimes you may get a message that someone is speaking directly to you and giving you a message, and maybe something you want to act on.
Dr. Megan Gomez 00:23:12
One of the other things I wanted to point out was another one is that the caregiver, whether it be a family caregiver or a paid caregiver, is trying to poison you. Maybe you're thinking that the medication that they're giving you is going to harm you in some way, that it's not really the medication, it's something else. Or you may become suspicious of the food. There can be a wide array. You can see how difficult this would be for both the person with Parkinson's as well as the loved ones who are caring for them.
Delusions can cause a great deal of distress. They can cause suspiciousness of those who are close to you. They can cause a violent or angry attitude toward those who are close. If you're having the delusion that your partner is being unfaithful, naturally, you're going to be upset about that. You're going to feel betrayed. You're going to want to convey how upsetting this is. It can cause conflict in your relationships.
Another example could be that you believe wholeheartedly that your grandson is stealing money from you. You may be convinced that when he comes and visits, he's stealing things, maybe putting things in his pocket, going through your wallet, and you can understand, if you're being falsely accused of something, the impact that it can have. It's so important to share this education with people with Parkinson's as well as family members to better understand where these beliefs may be coming from.
Delusions can cause legal and safety problems. Again, it can cause people to feel that they need to defend themselves, whether that be separating themselves from the people that they think are hurting them or trying to hurt them. It can be causing physical aggression. They may feel like they need to have a weapon nearby in order to protect themselves. It can cause social embarrassment. I've had people with Parkinson's who think their spouse is cheating on them, and they'll go through their wife's phone and call people and say, who are you? Why are you talking to my wife? It can cause a lot of issues.
Dr. Megan Gomez 00:25:40
It can cause stress and, again, more social isolation. We know that Parkinson's disease can be very isolating. When we're experiencing these hallucinations and delusions, we may pull back from other people, or people may sort of isolate from us. Again, so important to have these conversations.
A couple specific delusions: a belief that different people are in fact a single person who can change their appearance or be in disguise. A delusion that one is dead, decaying, does not really exist, or has lost their blood or internal organs. A delusion that a friend, spouse, parent or another close family member or pet has been replaced by an identical imposter. Sometimes, say a woman with Parkinson's may think that their partner is not really their husband. It looks like their husband, but they're convinced that someone is just pretending to be their husband. They may say, are you my husband? Are you my wife? Where is my wife or my husband? You're not them. You're pretending to be them, and the person again may try to convince them, like I am really your husband or your wife. I am really your daughter. I am really your friend.
Othello syndrome is the delusion involving jealousy and characterized by the false absolute certainty of the infidelity of a partner, leading to preoccupation with the partner's sexual unfaithfulness based on unfounded evidence. Again, I see this one a lot, and I know how distressing this can be for both parties.
Caregivers are more likely than people with Parkinson's to recognize the presence of hallucinations and delusions and may provide important insight. Even though a person with Parkinson's may experience hallucinations or delusions, they may not want to tell their medical provider about it. Sometimes the family is in a tough spot because they can be in the medical appointment, they can hear the doctor ask if they're experiencing this, and they can hear the person with Parkinson's deny it, even though they are.
Dr. Megan Gomez 00:28:16
I work with caregivers often who say, what should I do in that situation? I want to tell the medical provider what's going on at home, but I don't want my husband to get upset with me. He will see me betraying him in disclosing that, or he will be so mad that I told the truth. I think that can oftentimes be a dilemma that family caregivers experience. But again, I think it's really important that the medical providers know what's going on so that they can provide suggestions and strategies and treatment options.
We talked about this spectrum of psychosis, psychosis meaning the combination, or the hallucinations and/or the delusion, and that can occur slowly, right? It's a progression. You start with the insight, you know it's not there, and slowly, sometimes over time, you can lose that insight. But it happens slowly and gradually over time versus experiencing the hallucinations or delusions all of a sudden, meaning within a couple hours, within a day, you went from fully insightful and aware of what's going on to this full-blown psychosis. It's important to know this distinction because if it does happen all of a sudden, it might be what we call delirium.
That's when we have this acute episode of confusion, disorientation. We go from normal to delirious in just a few hours or days, and it results in a change in our attention, in our energy, our sleep cycle, so we're up at night, sleeping through the day, and experiencing those hallucinations and delusions.
What are some things that can cause delirium? One of the most common things is infection: urinary tract infection, pneumonia, changing or stopping or increasing or decreasing a medication. Dehydration, so we know that people with Parkinson's oftentimes are not drinking enough water. Substance withdrawal, so maybe you're no longer drinking, or you were hospitalized and you didn't have access to a substance that you were on, and that withdrawal can induce the delirium. Very high or low blood sugar, low blood pressure, post-surgery, so maybe you had a knee replacement surgery or you had a laminectomy or some sort of surgery. Any surgery or hospitalization can induce a delirium, and then finally, organ failure.
Dr. Megan Gomez 00:31:17
Some of these causes of delirium are very easily reversible, right? Pump someone up with fluids, treat that UTI, and they will revert back to where they were before that infection or dehydration. You can expect and imagine that that person will go back to where they were. That's different than this progression of Parkinson's psychosis, and I think it's really important to tease those two apart.
Before we move on, if you experience that acute change, it's very important to seek medical attention so that the team can figure out what's going on. Is there an infection? Are you dehydrated? They can treat it, and then you will go back to your baseline level of functioning. If it's more of that slow progressive experience of the delusion and hallucinations, that's something that you would talk with your neurologist about, your movement disorder specialist about. That way, they can explore what options are for treating that.
Causes of the PD psychosis, the more slow, gradual loss of insight, can be a direct result of the changes that are occurring in our brain as a result of the Parkinson's disease, or the medications used to treat Parkinson's itself can cause these symptoms. We know that it can sometimes be a direct result of the brain changes happening with Parkinson's because sometimes people haven't started the medication, the dopamine therapy yet, and they experience it.
There are also reports of people with Parkinson's before the medications were discovered, right? Before carbidopa-levodopa existed, people with Parkinson's were watched and experienced these symptoms long before the medication even existed. But the medication can certainly contribute to it. We know that when we take an increase in medication, or sometimes people will make errors in their medication and take too much, or I've had one veteran who said, the doctor wanted me to take this medication four times a day. I don't have time to do that.
Dr. Megan Gomez 00:33:32
I take all of them in the morning. Of course, that's not what we want to do, but sometimes people don't have the education about why we're taking our medication at certain times.
How common is this? Approximately 50% of people with Parkinson's experience hallucinations or delusions over the course of the disease. Ninety percent of people do not tell their physician about it. You can see that a vast majority of people who experience this don't talk about it with their doctors. Therefore, when we're doing research studies and trying to get a better idea of what's going on, that number of 50% could be a lot higher because some people may deny these symptoms, again, out of fear of how they will be perceived and what actions will be taken.
Potential impact. These symptoms can be benign and not bothersome. Again, sometimes the content of the delusion or hallucination is innocent and sometimes pleasurable. They're happy things. It can be children playing. It can be something not distressing, but it can, in some instances, reduce the quality of life for people with Parkinson's. Again, they can cause safety issues. It can result in people calling 911 frequently because they're convinced that someone's on the roof or trying to break in.
It can result in a lack of sleep for the people in the home because they're trying to figure out what's going on and help calm the person experiencing this. We know that sometimes people are propelled to do something in response to seeing, hearing or believing these things, and they can put themselves at risk of falling or putting themselves in dangerous situations, like maybe climbing up a ladder to investigate what's happening in a tree or on the roof.
It can increase caregiver burden, increase the cost of care, the risk of hospitalization, and placement in long-term care facilities. Obviously, if you're experiencing this, the caregiver may be stressed trying to manage this, especially if you won't talk to your doctors about it. It can increase cost of care. Maybe you're not able to be unsupervised because it may put you in dangerous situations.
Dr. Megan Gomez 00:36:04
Parkinson's is not the only medical condition that can cause psychosis. Here is a list of other medical conditions that can cause it. Again, my hope is to destigmatize. Parkinson's isn't the only one that can cause this. There's an array of other medical conditions, and Parkinson's is just one. Again, I want you to feel comfortable talking with your family and your doctors if you're experiencing this. As medical providers, we're not fazed by it nearly as much as you or your family are.
Hallucinations are more common in people with cognitive problems, depression and sleep problems, and absolute dose of PD medication is not associated with hallucinations. Sometimes people will say, I don't want to take too much medication if it's going to mean I'm going to experience hallucinations. There's no specific dose that is associated with the onset of hallucinations. It's more increasing the medications that can sometimes put people at risk for the onset of hallucinations. Most people with Parkinson's will experience hallucinations after 10 years of diagnosis.
Even in the Parkinson's group that I facilitate at the VA, I oftentimes am saying, let's talk about hallucinations and delusions. But a lot of people are hesitant to talk about it. They don't want to be judged by their peers, and they don't want false attributions to be associated with it. Again, I completely get it, but find a doctor that you trust, that you feel safe with, that you feel like you can have these open discussions with.
Hallucinations, even with insight into a hallucination, can still be distressing. Hallucinations can occur occasionally or be constant, can be progressive and disabling, and can be demoralizing and fragmenting to home life, especially if your loved ones are the focus of the delusion. Again, I say can be because there are no total sweeps when we're talking about this. Each person is so individual. Each family is so unique. We really can't make broad assumptions about this.
Hallucinations are less likely to occur when you're stimulated. When you're busy and engaged in an activity, you're less likely to experience the hallucination. It's more so when the house is quiet, when it's dark, when there's not a lot going on, that these hallucinations can emerge. They can be more likely to recur with vision problems. We know people with Parkinson's experience a lot of vision problems. Sometimes our eyes do not focus. Sometimes we have that double vision. Sometimes we have blurred vision. Sometimes we're sensitive to light, and we can have what's called night blindness.
Dr. Megan Gomez 00:39:14
There's a lot of visual changes that happen, which can make it a lot easier for us to misperceive our environment and to see things because our brain is kind of filling in the gaps where our vision isn't working the way it should be.
Trade-offs. A lot of the medications used to treat the psychosis oftentimes act on dopamine receptors, which can make our motor symptoms worse. A lot of times, we take our dopamine medications, our Parkinson's medications, to treat the motor symptoms, but that can sometimes induce the psychosis. We can find ourselves in this catch-22 of treating the motor symptoms can elicit the psychotic symptoms, or having an antipsychotic medication can sometimes make the motor symptoms worse.
That was before a new medication was FDA approved, and I'll talk about that because it doesn't impact our dopamine system. It impacts serotonin, which is a different neurochemical. Medication adjustments. Again, I'm not a medical provider. I do not do prescriptions, or that's not my realm, so talk with your doctor about it. But just some general messages: discuss your symptoms with your doctor. They may want to eliminate non-essential medications.
Oftentimes, I see people with Parkinson's, especially at the VA, can be on 25, 30 different medications. Their regimen of when to take medications is so complicated. Some they take in the morning, some they take at night. The Parkinson's they take throughout the day. Reduction of unnecessary medication, so maybe don't stop it, but see if something can come down, and then starting medication to help treat hallucinations or delusions. I get it. Sometimes people are like, I don't want to start another medication.
More attention has been paid to this topic. I think medical providers are hopefully becoming more aware of it. I think educational forums like this are very important to provide education to family and patients, again, to reduce the stigma. That medication that I mentioned, the pimavanserin, or Nuplazid, has been FDA approved to treat this. Of course, for some people, it can resolve these psychosis symptoms. For some, it can improve it, and for some, it doesn't help. Medications are an option, and there are also behavioral things that we can do in the home.
Dr. Megan Gomez 00:41:59
Again, these changes often happen gradually, progressively over time. Sometimes the medication can help, but there are also other things that we can do behaviorally to help with this. People with Parkinson's who experience hallucinations or delusions may become more restless or emotional. Again, they can experience fear, anger, suspiciousness, agitation.
They may change their routine or their behavior. They may start becoming more controlling of their spouse if they think they're being unfaithful, or they may distance from their grandchildren if they think they're stealing from them. They may take more safety precautions, making sure there are multiple locks on the door, making sure that their house is safe. They may lose confidence and self-esteem. They may see their anxiety go up as they start experiencing this.
Things to consider. Hallucinations and delusions can increase when we're in new environments. A lot of times, family will say, we took this trip, and it was terrible because the hallucinations and delusions really picked up. When you travel, when you're in a hotel, a hospital, a new home, if you move, or maybe you have a vacation home and when you go there, it can be very disorienting. Maybe you got a hospital bed and you've relocated to a new bedroom. That new environment can sometimes cause these symptoms.
Again, we talked about the fear of being judged, being labeled crazy, having to start new medications, being institutionalized. All of these can be fears, but I think at the end of the day, it's really important to consider the values. What matters most to you? What's impacting your quality of life and is distressing to you and your family? What can you do if you have Parkinson's? Focus on your sleep. Focus on that physical exercise, which we know is good for your brain, it's good for your body, it's good for your overall health.
Allow your family caregiver to take breaks. Allow your family caregiver to take care of themselves so that they can better be able to care for you. Keep a nightlight on in the room so that you have a better sense of what your environment is. Declutter so that there aren't all these objects in your room that you might misperceive. Things that can be calming: music, photos, pets, verbal reassurance. Some wives will put Post-it notes: You're home. You're safe. You're loved. Just sort of all these things to reassure and orient the person.
Dr. Megan Gomez 00:45:02
Tips for caregivers. We know that your loved one, your person with Parkinson's, may not be convinced that the delusion is in fact a delusion. Rather than shaming them, you can say, these are not real. They are a medication side effect. You're not going crazy. Don't try to rationalize. If you need to, leave the room so that you don't engage in an argument. Again, orienting the person, keeping a routine, removing any weapons that may cause a safety issue.
Again, if it's an acute onset, you may want to go to the ER or make sure you're getting medical attention quickly. If it's more regular and slow, talk to your neurologist. Tips for self-care. We know the caregiver has to take care of themselves in order to care for the person with Parkinson's. If that means hiring a caregiver to come in, asking family to step in so you can get your breaks, it's essential. It's a marathon, right? It's not a sprint. We need to pace ourselves so we don't burn out.
Acknowledge your thoughts, your feelings, your limitations, writing down what's going on with you or talking to someone, really looking at what is the main source of my frustration in this caregiving role. Identify what's within your control and what's not in your control. Forgive yourself for not being perfect. Just like the person with Parkinson's, you're going to have good days and bad days, and we all have our dynamics in a relationship, right? Parent-child relationships are never perfect. Marriages are never perfect, and those dynamics that we had before Parkinson's are certainly still going to be there and impact what's going on presently.
Maintain social connection. Even if the person with Parkinson's gets mad at you when you leave and go do something without them, you still have to do it. Practice stress management skills, and do it early to prevent that complete burnout and exhaustion that happens if you don't take those breaks.
With that, that concludes the presentation. I'm happy to hear any questions.
Dr. James Beck 00:47:32
Thank you very much, Dr. Gomez. That was a fantastic presentation, and I appreciate your deliberate pacing and very clear information. I think that was really fantastic for everyone to have as part of that. Questions have been coming in, as you can imagine. You touched on this a little bit, and so the first question, I think, is really important.
I think what you emphasize is that letting clinicians know what's going on so they're aware of this. Some of the questions coming in again from one of our listeners, Paul: how do you do this? You touched on it briefly. Would you just spend a little bit more time talking about how, as a care partner, do you let the clinician know what's going on with their loved one as part of that process? Again, you've touched on a sense of violating or betrayal, but it would be great if you would just cover that again. I appreciate that.
Dr. Megan Gomez 00:48:27
Yeah, absolutely. I would encourage the family to communicate with the doctor. Sometimes, of course, there's confidentiality, but as a family member, you can always send a message to the doctor. This is what I'm experiencing at home. The doctor may not acknowledge it or respond because of confidentiality, but you always have that one-way communication. Leave them a voicemail. Send them a secure message on your portal. Slip them a note when you're in the room with them.
I think it's important. I think if the person with Parkinson's did have the insight, they would know you're trying to protect them. They would know you're trying to help them. That's the goal, right? Everybody wants to make sure everyone stays safe. I think finding those creative ways where you can let your doctor know is super important.
Dr. James Beck 00:49:22
Yeah, absolutely. Thank you for sharing that again. You touched a little bit on the timing of some of these symptoms and acute onset: go to the ER. There's something else going on. It's probably not Parkinson's. But when we look at the scope of it, when in the disease would you say this occurs? You mentioned, after 10 years of Parkinson's, a good number of people may be experiencing this. Is it safe to say this is not something you see at the beginning of someone's Parkinson's journey? It's more midway or farther along?
People coming into our session today may have just been diagnosed, or have loved ones just diagnosed, or those who've had it maybe for 10 years and are perfectly fine. Would you touch on that a little bit?
Dr. Megan Gomez 00:50:13
Yeah, absolutely. Of course, when we talk about Parkinson's or parkinsonism, sometimes we're talking about atypical Parkinson's too. We know that with Parkinson's, typically we have the motor symptoms first, and over time, those cognitive changes, behavioral changes can occur. I think that 10-year timeframe on average, but of course everyone's different. But then when we talk about Lewy body dementia, sometimes those cognitive changes or behavioral changes can happen before the motor symptoms.
The symptoms can happen pretty early on depending on what type of Parkinson's you have. There are a lot of different factors, so it can emerge even before the motor symptoms if we're talking more about a Lewy body disease happening.
Dr. James Beck 00:51:06
Yeah, fantastic. I think Sandy was one of our listeners that put that question in. Again, trying to understand, she's experienced these symptoms early in her disease. What could that be? I think her neurologist is pointing in that direction. I'm sure other people may be in that same situation as well. You work with veterans a lot at the VA. Is PTSD a confounding factor for this? I mean, for people who've had these issues?
Dr. Megan Gomez 00:51:35
Absolutely. A lot of our veterans have had PTSD, and sometimes it's combat related. Sometimes it's due to really tough childhoods. Sometimes that can certainly play into some of those delusions, right? We all have our sensitivities. Sometimes if we have a trauma history or something significant happened to us, then the delusion or the suspiciousness or paranoia can be linked to it.
Sometimes family members will say, it's not the Parkinson's, he's always been jealous. Sometimes it can be a combination of the two, right? What's happened in our life, and then the Parkinson's can sort of exacerbate or attack some of those things that are going on. Sometimes wives will say, is it the Parkinson's? Is he just being a jerk? He's always kind of been like this, but now it's so much worse. I think there's a lot of that that can certainly impact it.
Dr. James Beck 00:52:36
Yeah, for certain. We spent a fair bit of time on delusions, which I think is helpful, and a lot of our listeners are coming in with questions about that. As you point out, people have a really firm belief that something is a certain way when it's not. Part of your tips are to try not to rationalize. If it's frustrating, leave the room. But for care partners who are living with these people who have these firm delusional beliefs, how do they really confront that? I mean, deal with it.
We've talked about some very specific ones where people think of infidelity or issues, or it could be even more banal, where someone thinks it's Sunday when it's actually Monday or something like that. What's the advice? Because there's a broad spectrum, so I appreciate you can't provide an answer for everything, but what's your advice?
Dr. Megan Gomez 00:53:35
Yeah, I think it's really easy as medical providers to say, don't feed into it. Don't engage. Don't let it escalate. But I think often about my own experience in dealing with my grandfather. One thing that came up was that he was convinced his paid caregiver was putting his bowel movements in his face. He would tell me, he's smothering me with poop. He was so upset about it, understandably, and demoralized.
I said, you know what? We are going to see if that's happening. If he is doing that, we are going to make sure he never comes back here. He was saying, thank you. Your grandma said it wasn't happening. Your mom said it wasn't happening. He felt so dismissed. He felt like no one was listening to him or taking him seriously.
I think you have to weigh: What are the pros and cons, the risks and benefits, of me saying, no, it didn't happen, knowing they can get agitated, knowing they can feel really hurt by you not hearing them? Are there safety concerns? Is it someone who's kind of removed that's the target of the delusion? Is it someone very close? You also have to think about the caregiver and the impact on them.
There are so many considerations that are taking place, but I think you don't want the person with Parkinson's to get so upset that their blood pressure goes up and that it can be dangerous for them to get so worked up. Sometimes you want to do what's going to calm them down and kind of go on a different path, distract them to something else. It's a very delicate subject.
Dr. James Beck 00:55:24
Yeah, I can imagine. Another question that's come in is, you've talked about delirium and listed several examples. We mentioned that's often an acute issue that requires immediate medical attention. But one of them is post-surgery. A listener has written in as a loved one who is still, months afterward, experiencing hallucinations. Is it possible that what we're seeing in these situations may have been there, and now it just became uncovered because of a stressful event?
Or is this something else that may just represent some other issue that perhaps may be going on that they should consider? I guess the question is, does delirium become hallucinations, psychosis? That seems to be unusual. But people are getting surgical procedures, they're coming back, and certainly this can happen in the hospital where they're trying to be treated. But how long does it persist, and when does someone need to be concerned if it persists too long?
Dr. Megan Gomez 00:56:40
Yeah, that's a great question. I think, typically, if it's a clear infection and a clean treatment of the infection, you would expect the person to go back to baseline. Sometimes, of course, we always think about whether a person has dementia or not, and sometimes we have that cognitive reserve. Sometimes having a surgery, going under anesthesia, it can sort of take a toll on our brain, and it can exacerbate or worsen, or we have more of a step in that decline.
I think there can be a lot of variables at play. People oftentimes say, I'm supposed to have this surgery, but I'm afraid of what the anesthesia will do to me. Families sometimes will say, he had really bad delirium after the last surgery. I'm afraid he's going to have delirium again this time. Usually, if it's a true delirium, it will resolve and you'll go back. But of course, if there are cognitive factors, dementia, sometimes we do see that there is that decline after a surgery where they get worse and they don't get better.
Dr. James Beck 00:57:51
Dr. Gomez, you bring up an interesting issue, I think. What's the conflation between or correlation between dementia and the psychosis? Does one precede the other? Is there a course of events to watch out for? Do people have hallucinations and they're cognitively intact otherwise, or what do you see?
Dr. Megan Gomez 00:58:14
You can see the gamut. You can see a person had just done a comprehensive neuropsychological evaluation, they had maybe mild cognitive impairment, they don't meet criteria for dementia, yet they're experiencing these hallucinations and delusions. Or you can see that someone does have a diagnosis of dementia, and then you're wondering, are these hallucinations and delusions a result of the type of dementia they have? Is it a result of Parkinson's? It can oftentimes get very messy. I would say that the order of events can really vary depending on what's going on in your brain.
Dr. James Beck 00:58:55
Yeah, fascinating. This has been a great discussion, Dr. Gomez. Thank you very much for your time, and I appreciate everyone for taking the time to join us today. We have a lot of questions that come in, and I apologize that we haven't been able to get to everything as part of that. But we're here, so feel free to reach out to us through our Helpline, 1-800-4PD-INFO. We also have a web email address for you to reach out to us as well as part of that.
This concludes our expert briefing for today and for our season. We will have some more coming up, certainly in March, when we'll restart with our expert briefings. I encourage everyone to come back in. We'll have another really good agenda that has really been driven by our listeners today on what we should be covering in our next session for 2024. I appreciate everyone taking their time to fill in surveys and give us the feedback for that.
I also want you to know we're always here for you, either online through our website, through our Helpline, both the 800 number as well as here's the email address, Helpline@Parkinson.org, as part of that process. Do not hesitate to reach out to us as part of the process.
Before we go, and this is the Zoom world, the screen will go black, but what will happen is that a link will pop up with a survey. Please complete this evaluation of our webinar. Give us feedback that we can share with Dr. Gomez. Give us feedback of this webinar and the series. Let us know if there's anything we should add that we're missing, other ways we can make it better, so your time is well spent, because we listen and we do our best to improve year after year. Thank you everyone, and I wish everyone a very good day.
