Episode 42

What does Paranoia and Paranoid Delusions Look Like with Alzheimer’s Disease and Related Dementia

Paranoia in the context of dementia can take various forms and may manifest differently in individuals living with Alzheimer’s disease and related dementia. It’s a very typical occurrence with dementia, so Lisa shares some of what the more common signs are that one can expect to see, and what the best practices are to responding to paranoia.  Lisa describes examples of paranoid behaviors such as:

  •  Suspicion of theft.
  •  Belief that others have ulterior motives such as conspiring against them.
  •  How dementia-related paranoia can lead to halluciations and delusions causing individuals to see, hear, or believe things that are not based in true reality.
  •  How paranoia can lead to refusal of care and assistance as well social withdrawl.
  •  Strategies and techniques that are effective in responding to paranoid behaviors.

Join Lisa's Minding Dementia Support Group Facebook page.

About the Host:

Author Lisa Skinner is a behavioral specialist with expertise in Alzheimer’s disease and related dementia. In her 30+year career working with family members and caregivers, Lisa has taught them how to successfully navigate the many challenges that accompany this heartbreaking disease. Lisa is both a Certified Dementia Practitioner and is also a certified dementia care trainer through the Alzheimer’s Association. She also holds a degree in Human Behavior.

Her latest book, “Truth, Lies & Alzheimer’s – Its Secret Faces” continues Lisa’s quest of working with dementia-related illnesses and teaching families and caregivers how to better understand the daunting challenges of brain disease. Her #1 Best-seller book “Not All Who Wander Need Be Lost,” was written at their urging. As someone who has had eight family members diagnosed with dementia, Lisa Skinner has found her calling in helping others through the struggle so they can have a better-quality relationship with their loved ones through education and through her workshops on counter-intuitive solutions and tools to help people effectively manage the symptoms of brain disease. Lisa Skinner has appeared on many national and regional media broadcasts. Lisa helps explain behaviors caused by dementia, encourages those who feel burdened, and gives practical advice for how to respond.

So many people today are heavily impacted by Alzheimer's disease and related dementia. The Alzheimer's Association and the World Health Organization have projected that the number of people who will develop Alzheimer's disease by the year 2050 worldwide will triple if a treatment or cure is not found. Society is not prepared to care for the projected increase of people who will develop this devastating disease. In her 30 years of working with family members and caregivers who suffer from dementia, Lisa has recognized how little people really understand the complexities of what living with this disease is really like. For Lisa, it starts with knowledge, education, and training.

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Transcript
Lisa Skinner:

Well, hi everybody. Here we are, again, you are tuning in to another brand new episode of The Truth Lives and Alzheimer's show. And I am Lisa Skinner, your host. And I decided to dedicate this episode exclusively to one of the very, very common behaviors and symptoms that we see with Alzheimer's disease and related dementia, which is paranoia, and paranoid delusions, and I'll explain the difference between them in this broadcast. The reason why I wanted to dedicate an entire episode to this is because I've actually had several people from our new support group messaged me to let me know that they really wanted to know more about this topic. And I also had requests from other people through the podcast. So I decided that would be a really good topic to cover during this broadcast to help people have a better understanding, because you could probably expect it to happen with your loved one, or the person you're caring from. That's how prevalent paranoia and paranoid delusions are with this with these diseases. So let me start off by saying What does paranoia look like, in people with dementia. And in the context of dementia, it can actually take various forms, and may manifest differently in different individuals, paranoia, and dementia causes affected individuals to become suspicious. That's the main thing, they're suspicious, but they can also become fearful, and mistrustful of others. Even those who are closest to them, some common signs of paranoia and dementia may include so these are some of the things that you can expect to hear that they become suspicious of people stealing from them. That was my very first experience when I was 16 years old. And I didn't even know my grandmother was in the middle of cognitive decline. And I went over to visit her one day. And she started telling me stories about men breaking into her house and stealing from her. And this was my very first exposure to Alzheimer's disease, but I never heard any kind of story like this out of my grandmother's mouth. So she definitely suffered the paranoia, she had the paranoid delusions. And she just honestly believed that these things were really happening to her. And like I said, I'd never heard anything like this ever come out of her mouth in all those years that I had known her, and to all of a sudden be hit with her jewelry is being stolen. And these men, she was convinced were trying to harm her even kill her. was just pretty shocking for me, and I didn't really know what to say. So I'm gonna, I'm gonna dive deep into that with you here today. So some of the other things that you can expect not just suspicion of thievery, and you might very well end up being the person who is being accused of theft. That's not uncommon. With my grandmother, she didn't accuse me of stealing her jewelry. She said that these men were breaking into her house and stealing her jewelry and she actually had me break her jewelry box open to show me that everything was missing. So she clearly believed that this was really happening to her but in reality what was happening is she was placing her jewelry in what she believed to be safer places from these men that she believed were breaking into her house and then she couldn't remember where she put them. So she in her mind, she drew the conclusion that they were had steal stolen her very precious things. Another thing to look for is belief that others have ulterior motives. People with dementia may start to believe that others, including family members, and caregivers have malicious intentions or are conspiring against them. I've seen a lot of that they have hallucinations and delusions. dementia related paranoia can also lead to hallucinations and delusions, I'm going to go into that in just a little bit here, causing individuals to see, hear or believe things that are not based in reality. And when I say they're not based in reality, I'm talking about our reality, not their reality, it is totally based in their reality. But those two realities are incongruent. So you got to keep that in mind. Refusal of care. I've seen this happen many, many times where the paranoia will cause individuals with dementia to refuse assistance or care from others, as they may believe that the help offered is harmful or part of a plot against them. You might see some social withdrawal that's not uncommon. Paranoia can lead to a reluctance to engage in social activities or interactions due to a fear of the other's intentions. So it's important here to note that paranoia and dimension can be extremely distressing for both the affected individual and the caregivers and the family members and anybody else that that interacts with somebody who lives with Alzheimer's disease lives with dementia, and somehow somewhere their paths cross. It could be they go to the grocery store and the checker and they accuse the checker of not giving them the correct change or something along those lines. These are very realistic situations out there. So it can lead to even more extreme challenging behaviors and make it very difficult to provide care. I don't you know, I don't blame anybody for feeling a little offended and hurt that here they are caring for either their loved one or they're the person that they've been hired to care for. And they think they're doing everything they can to provide them with a healthy happy life. And then all of a sudden, out of nowhere, they're being accused of stealing from them and, and plotting against them. That's, that's disheartening, I've been there. individuals with dementia who experienced paranoia may also exhibit the following behaviors and symptoms. So pay attention to this closely. They may become so paranoid that they become very agitated and aggressive. Because of their belief. Paranoia can contribute to increased agitation and aggression in individuals, obviously living with dementia, they may lash out at you verbally, they may lash out at you physically, in response to their fears and suspicions. They may wander due to their paranoid thoughts. Why? Because it may lead to some individuals with dementia in an attempt for them to escape perceived threats or to search for a safer place to get out of that situation. This behavior obviously can cause huge, huge safety risks for anybody trying to exit their surroundings who believes that they are unsafe. Another thing that happens frequently is they will continue to repeat the accusations. People with dementia may repeatedly accuse others of wrongdoing, even in the absence of any evidence to that and may be unable to be reassured by logical explanations. Why? Because it's almost impossible to use logic and reasoning with somebody living with especially from mid stage on dementia. I've mentioned that many many times in my episodes

Lisa Skinner:

Look for emotional distress. Paranoia can cause significant emotional distress, anxiety and fear in individuals living with dementia, leading to increased emotional volatility and mood swings. Remember, they typically fall back on having to rely on emotions to react to things when they lose their ability to reason and use judgment and things. And everything to them. That maybe to us is, seems like a little deal. To them, it's a huge deal. So this is the disease that you're watching and experiencing. They tend to have difficulty with activities of daily living, paranoia may interfere with an individual's ability to carry out daily activities such as eating, bathing, taking medications, as they may become suspicious of the actions and intentions of those trying to assist them. I'm not taking those pills, that woman is trying to kill me, she's trying to overdose me on sleeping pills. This is the disease folks. So it's very important for caregivers and, and family members and anybody involved in this world. If this happens to you to approach the person living with dementia, who's having a paranoid thought, They're accusing you of something or having a paranoid delusion that you approach this with empathy and understanding. Managing paranoia in dementia often requires a multifaceted approach that may include asking the doctor for some medication, learning behavioral interventions, you may need to do some adjustments in their environment, and show tremendous support even if you are feeling hurt, or upset that they are accusing you of things that you know that you have not done. So provide a calm and reassuring environment, maintain routines, and ensure safety measures are in place, which all can help manage the challenges associated with paranoia and dementia. So I'm going to now explain the difference. I'm going to tell you what paranoid delusion is we just specifically talked about paranoia. So a paranoid Delusion is a type of false belief characterized by an intense and unwavering conviction, that one is being targeted. Like my grandma, she was convinced those men were breaking in and stealing her things and she was being targeted, they she was convinced they would eventually kill her. That's a paranoid delusion. Or they're feeling persecuted, or conspired against by others, despite again, a lack of evidence or a rational justification, because there is no rational justification. These beliefs are often irrational, and not based in their reality. I'm sorry, not based in our reality, it's 100% based in their reality, so these delusions are obviously distressing. They're disruptive to the affected individual's life, and can lead to significant functional impairment. It's distressing to anybody who, who is a victim of these accusations or delusions, and can cause heightened anxiety to everybody. It can cause fear. hyper vigilance, you see that as a as a response to paranoia and paranoid delusions and people living with dementia. In some cases, then it may lead to aggressive and defensive behaviors, the person attempts to protect themselves from their perceived threats. So what is the difference between With paranoia and a paranoid delusion, the terms paranoia, and paranoid delusion are related concepts, but they have very distinct meanings within the context of mental health. So let me go through paranoia one more time with you. That refers to a broader state of mind, characterized by a pervasive distress, distrust, and suspicion of others, often without specific delusional beliefs. It involves a general sense of being on guard, feeling threatened, and being overly suspicious of the intentions of others. Paranoia can be a feature of various mental health conditions, including schizophrenia, delusional disorder, and very prevalent with dementia. In the context of dementia, paranoia can manifest as a general state of mistrust, suspicion and fear, without necessarily involving fixed false beliefs. So contrary to just regular the paranoia is the paranoid delusion, fixed false beliefs. So a paranoid delusion on the other hand, is a specific type of delusional belief, involving a fixed false conviction that one is being targeted, persecuted or conspired against by others. These beliefs are often irrational and not based in the area. In our reality. individuals experienced paranoid delusions may firmly believe that they are being spied on I've heard that many times plotted against I've heard that many times, or harmed by others, sounding familiar to me, despite a lack of evidence to support those beliefs. So while both paranoia and paranoid delusions involve a heightened sense of suspicion and mistrust, paranoia is a broader state of mind characterized by a general distrust and vigilance, whereas a paranoid delusion specifically refers to a false and I'm going to emphasize this term, an shakable belief of them being targeted or persecuted. What does that mean an unshakable belief? Once they believe it, they believe it, and I'm going to now go into responses effective responses, so that situation just doesn't get out of control for you. Because of the fact it's an unshakable belief. paranoid delusions are a specific symptom that can occur with the broader framework of paranoia. These delusions involve fixed false convictions that others are plotting against against buying on them, intending to harm them. And despite a lack of evidence to support these beliefs, those individuals experiencing paranoid delusions hold them with absolute certainty. So paranoid delusions can significantly impact daily functioning as a result can impact your relationship and overall wellbeing for everybody. So what should we say if we are being targeted with a suspicious, paranoid accusation, and this is really important, the way it is approached and the way it is responded to, to minimize it being further escalated into a more severe situation. When someone is experiencing paranoia and paranoid delusions, it's very important to approach them with empathy, patience, and a calm demeanor. So here are some of the techniques to use, and you do not and it's very difficult our gut, instinctive reaction, of course, would be to defend ourselves. No, that's not true. I didn't take your jewelry. I didn't eat your muffin. But that's the worst thing you can do. And because that's going to be our natural Old defense mechanism,

Lisa Skinner:

we really are put in a situation where we have to stop, not react, and basically retrain the way that we learn to respond to these situations. So here are some suggestions. First, validate their feelings, acknowledge their feelings and experiences without necessarily agreeing with what they're accusing you of. Avoid arguing or trying to convince them that what they're telling you is not true. They believe it's true. It's generally helpful to argue it's generally not helpful to argue with someone who is experiencing paranoid delusions, trying to convince them that their beliefs are not real, may lead to frustration and increased distress. I've seen that over and over and over again. Instead, focus on empathetic listening and providing comfort. Also, by doing this, you will create a calmer environment for everybody involved. And then you can ensure that the environment is calm and safe minim by minimizing noises and distractions, and by speaking in a gentle and soothing tone, this is critical. People living with dementia pick up on your moods, they emulate your moods. It just exacerbates their fears and their anxiety when they see that you're upset. So the best thing to do even if you have to walk out of the room and count to 200 come back with a calm demeanor, and a soft spoken voice. And then I'll tell you some of the things that you can say to them. You always want to provide ongoing support and understanding let your person know that you are there for them, and that you are committed to helping them navigate their experience. So what do you do if they don't believe you or don't stop accusing you of something that is absolutely not true, you know that you aren't guilty of what they're accusing you of. So if someone you are supporting continues to accuse you of something that's not true, especially in the context of paranoia or a paranoid delusion, this can be extremely challenging and distressing for you for them. So here are some additional steps you can take. If you find yourself in this scenario, very important. stay as calm as you possibly can be, and composed. It's crucial to remain calm and composed, even if the accusations are being hurled at you. And then establish a supportive routine. consistency and predictability can provide a sense of stability for individuals experiencing paranoia. So it's helpful to establish a daily routine. I've talked about this in many of the episodes to help create a sense of security, which is extremely important to people living with dementia. familiarity and security is key. Encourage social engagement. Remember, I said that you might notice that they'll withdraw from social engagement. So you want to encourage that. Because encouraging social interaction with trusted individuals, such as close family members, brands can actually provide a supportive network for the individual living with dementia. Social Engagement can also help reduce feelings of isolation and provide opportunities for positive interactions. It's not uncommon that somebody living with dementia does feel isolated and depressed and sad and lonely. At any given time. This is very common. So monitor them for safety again, if the individuals paranoid believe Use lead to behaviors that may compromise their safety. It's important to take proactive measures to ensure their well being. This may involve ensuring that the environment is secure, and that potential hazards are minimized. Again, very important, practice empathy. You understand this is the disease shoot that's talking, it's not them trying to be mean or difficult. This is the disease you're seeing individuals experiencing paranoia. paranoid delusions, often feel isolated and misunderstood. So approach them with that empathetic understanding with patients. And that will help you build trust and establish a rapport with them. I know it's hard, it's a very hard thing to do, when you are being accused of something that just simply is not true. But this is what it takes to navigate this challenge of paranoia and paranoid delusions. Another thing you can do is encourage open communication it but it's got to be in a non confrontational manner, let the individual know that you are there to listen and to support them without judgment. So let's talk about what are some of the most effective ways to respond to paranoia to paranoid delusions to accusations that are being hurled at you. And this type of behavior in people living with Alzheimer's disease and dementia. So can't emphasize enough, remain calm. It's important to remain calm and composed when interacting with a person experiencing paranoia. That's a huge lesson to learn and it's going to be a difficult one, because it's probably not your instinctive response. You can do this by not arguing or by not dismissing their feelings as this can escalate the situation. validate their feelings, acknowledge the person's feelings and reassure them that you understand that they are scared, you understand what they are believing you understand that it's causing them to feel anxious. So you can use phrases like I can see you're feeling worried. And that will show them that empathy that we're talking about. You can try a distraction and reassurance trying to redirect the person's attention to a different topic or activity to help alleviate that anxiety. So some of the things you can do is engage them in a familiar comforting activity or talk about positive memories. Reminiscence therapy. Again, create a safe environment ensure that the person feels safe and secure in that environment, immediate environment, and simple measures you can look for to to modify would be make sure there's adequate lighting they don't see like they used to see that there are familiar objects surrounding them that they will recognize and that you keep a predictable routine can really help reduce their feelings of paranoia and insecurity and avoid that confrontation by all means.

Lisa Skinner:

Please refrain refrain from arguing with the person about their beliefs, or trying to convince them that their fears are unfounded. Instead, you want to focus on providing comfort and reassurance always communicate with them clearly. You need to use clear simple language when communicating with the people living with dementia and avoid using complex or ambiguous statements that could contribute to their confusion and anxiety. They don't process information the same way we do with a healthy brain. So less is more fewer words. Simple, soft tone of voice. And reassure. Reassure, reassure when responding to paranoid accusation Students from someone with Alzheimer's disease and related dementia, it's important to communicate again in a calm, empathetic and reassuring manner. Here are some examples of phrases you can use to respond to paranoid accusations. And I know I'm repeating a lot of these techniques and strategies. But I also believe that the more times you hear it, the more the better these things will start to become second nature to you. So here are some calming and reassuring statements or responses you can give, I can see that you're feeling worried, I'm here for you. And I want to help you feel safe. I understand that I can see how upset you are. So let's talk about what's bothering you. And we'll figure it out together, that's a great one. I hear that you're feeling scared, I want I can hear it in your voice. So I want to make sure you know that you are totally safe with me. And then I'm here to support you always. I am so sorry, you're feeling this way I care about you. And I want to do whatever I can to help you feel better. I know it's hard. But I'm here to help you through this, you're not alone. And we will work through this together. Another good one, I can see that you're upset by what you are thinking. So let's focus on something positive to help you feel better. Or you can use any version of the responses I've just offered you. So here's a few more, I understand that you're feeling frightened. Let's take a deep breath together, and see if we can make things feel a little better. I can see that you're upset, I want you to know that I care about you and want to help you feel more at ease. You can say to them, I'm here to listen to you. I'm not going to judge you, you can tell me anything. And we will work through it together. You could say I really appreciate you sharing your concerns with me, I completely understand. And I want to help you feel as comfortable and secure as possible. So let's dig into what it is that's bothering you and see if we can't resolve it. I understand your feeling this way. Let's try to focus on something positive, to help lift your spirits. And maybe at that time, you can offer some a nice cup of tea or a cup of coffee or favorite deserves something like that to those types of things will help them feel safer and more secure. And then finally, one other suggestion, I'm here to support you through this. We can take things one step at a time. And together, we'll find a way to make things feel better for you. When using these phrases, it is important again, to maintain a calm and supportive demeanor, and to be patient and understanding. And when you are interacting with somebody living with dementia, that is a lot easier said than done. I know. Because I've been there, I've done that. And I know you have to. So you really have to just change your paradigm and re learn these responses because these are the effective responses and not the responses that are going to set you're going to just add fuel to the fire. So continuing on, and I hope that you're finding this information really helpful. So here are some responses that you can use. If you are being accused of stealing by somebody with Alzheimer's disease and dementia. These are essential responses using empathy and understanding. So you can say or some version of this, I understand that you're upset, but I assure you that I would never take anything from you. Let's work together to figure this out. That's perfectly okay to tell them. I hear that you're feeling worried about your belongings. I want to help you find what you're looking for and Make sure that you feel secure and that you trust me, I can see that you're upset. But I want to reassure you that I respect your belongings, and would never take anything without your permission. I'm sorry that you're feeling this way. I want to help you feel more at ease and show you that I would never do anything to hurt you. I understand that you're concerned. And I want to work with you to address your worries. So let's see if we can find a solution together. And I'm going to help you do that. I care about you. And I want to make sure you feel safe. I would never take anything from you. And I'm here to help you through this. But I can also understand why you might think that I'm the one responsible, because I'm the only one here. But I'm going to assure you that it wasn't. So let's find the solution together. When responding to accusations of stealing, it's important to address it and validate it and reassure that it's not the case. What but don't, don't get defensive about it. And that's the difference. offering to help the person find what's missing isn't important solution to this particular situation, and can obviously be a very supportive and proactive response. You understand you're hearing them and you you know that that they're suspicious of you because you're the only person around. So you're going to validate that you're going to acknowledge that. But if you offer assistance, you are demonstrating your willingness to address their concerns and alleviate their distress. However, it's important to approach this offer with sensitivity. And once again, with empathy, you understand what they're feeling and what they're believing, and to be prepared for the possibility that the missing item may not actually be missing. Maybe they hid it someplace, maybe they just simply misplaced it and didn't don't remember, or that the person's beliefs may not align with reality due to their condition. It aligns with their reality, and want to emphasize that, but it's doesn't align with the reality, the true reality or your reality, those are very different when somebody is exhibiting paranoia. When offering to help find what's missing, it's essential to do so in a gentle and non confrontational manner. You can say something like, you will help engage in a search with them. You again validate their feelings, using phrases like I understand how important it is to find what's missing. And together, we're gonna figure this out, and I'm going to help you look. Again, you can try redirecting to another topic. And of course, provide reassurance that you're there to help them. So if you're going to assist them and trying to find whatever it is that they believe is missing you. And if you know it's not, or it's not missing, because you had anything to do with it. Here's some phrases to use. I understand how important it is to find your watch.

Lisa Skinner:

I'm sorry, we weren't able to locate it. But I want you to know that I'm here to help you and support you through this. And we will continue to look until we find it. I know how upsetting it is when something seems to be missing. I want to reassure you that we looked everywhere that we could so far, we haven't been able to find it, but I'm ready to help you find it any way we can. So we will look again, I can see that this is very distressing for you. And I want to reassure you that I care about your well being. So let's try to find ways to help you feel more at ease. One of those ways is let's look for the missing item together. I'll help you. I understand how frustrating it is not to be able to find what you're looking for. So not only am I going to help you here Hear, but I'm going to support you throughout the whole process of trying to locate what you can't find. So, again, this is a very common occurrence, living with dementia, for them to experience paranoia and paranoid delusions. So the chances are that you will be on the receiving end of an accusation is pretty high. So learn these techniques, retrain your brains to try to respond to what will help defuse the situation and offer reassurance versus escalating the situation, which we really don't want to do. It can really get out of control, we call these catastrophic reactions. And don't forget, what seems to be not that big of a deal to you, is a big deal to them. So these are some this is my advice based on experience and everything I've learned in 30 years about how to the best practices to approach these situations. And I hope this has been really, really helpful for you, if you want if you are one of our Facebook, support group members, and you're listening to this, please put your comments and your feedback and any additional questions about this topic that you might have, and I'll address them for you. That's why I'm here. So I look forward to having you back next week for another new episode of The Truth Life and Alzheimer's show. Again, I'm Lisa Skinner, your host, and I really appreciate you taking the time to be here today with me. I'll talk to you next week. Bye bye

About the Podcast

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Truth, Lies & Alzheimer's

About your host

Profile picture for Lisa Skinner, CDP, CDT

Lisa Skinner, CDP, CDT

Author Lisa Skinner is a behavioral specialist with expertise in Alzheimer’s disease and related dementia. In her 30+year career working with family members and caregivers, Lisa has taught them how to successfully navigate the many challenges that accompany this heartbreaking disease. Lisa is both a Certified Dementia Practitioner and is also a certified dementia care trainer through the Alzheimer’s Association. She also holds a degree in Human Behavior.
Her latest book, “Truth, Lies & Alzheimer’s – Its Secret Faces” continues Skinner’s quest of working with dementia-related illnesses and teaching families and caregivers how to better understand the daunting challenges of brain disease. Her #1 Best-seller book “Not All Who Wander Need Be Lost,” was written at their urging. As someone who has had eight family members diagnosed with dementia, Lisa Skinner has found her calling in helping others through the struggle they can have a better-quality relationship with their loved ones through education and offering workshops on counter-intuitive solutions and tools to help people effectively manage the symptoms of brain disease. Lisa Skinner has appeared on many national and regional media broadcasts. Lisa helps explain behaviors caused by dementia, encourages those who feel burdened, and gives practical advice for how to respond.