Hallucinations and Delusions Associated With Dementia-Related Psychosis: Enhancing the Dialogue

MS. GREGORY: Hello, my name is Linda and I’m the primary caregiver for my mother who has Alzheimer’s dementia.

She began experiencing symptoms of dementia in early 2016. At the end of 2017 she began providing clues to her dementia-related psychosis.

At first, she started believing things that were not true. She said the kids were getting into her house and were moving things around. I tried to explain that this was not possible, but she insisted that it was happening.

Later, rather than the kids getting into the house, it was one little boy she saw and he was becoming problematic. He started to actually steal things and do things that she didn’t like and she was becoming fearful of him.

With these symptoms, my mother started becoming aggressive. Once when she was experiencing these hallucinations and delusions, she became very angry at me and threatened to shove me down the stairs. This was the first of several violent outbursts which led to the need to move my mother into a memory care unit.

Today, I will share with you my family’s journey with my mother to help emphasize the importance of healthcare professionals to communicate with caregivers about hallucinations and delusions associated with dementia-related psychosis. I also want to empower other caregivers and their loved ones to speak with their healthcare professionals about these symptoms. Thank you for joining today’s program.

DR. ATRI: Hello and welcome, everyone. Thank you for joining us for this important program. As we just saw, dementia is very common and an increasing problem in older adults worldwide, and along with Alzheimer’s disease and related dementias, many of the symptoms are very much neuropsychiatric and behavioral. And many individuals are going to experience over the course of their illness, hallucinations and delusions really that’s dementia. Depending on the type of dementia, this may be earlier or later or may be more recurrence and more distressful. But the bottom line is that these are very distressful symptoms that affect not only the patient, the individual person with dementia, but also a whole community of caregivers around them, and increase the burden to caregivers.

Today we’re going to explain the nature of hallucinations and delusions associated with dementia, their impact on the patient and also their caregiver, and talk about the need for increasing knowledge, and appreciation, awareness of these conditions, and the increased need for dialogue and information exchange between healthcare professionals and caregivers to identify this really important issue early on, to counsel individuals, to diagnose them, and provide strategies and…to the patients and families so they can manage them better over time.

Before we begin, please note that this is a disease awareness program. This is a non-CME program, this is intended only for healthcare professionals involved in the management of people with dementia and also with dementia related to hallucinations and delusions. It’s also sponsored by Acadia Pharmaceuticals. And this program is not meant to discuss specific treatment options.

So as we progress, I’d like to introduce myself. I’m Dr. Alireza Atri, I’m a cognitive and behavioral neurologist. I take care of patients and families with Alzheimer’s disease and related disorders and dementias. I’m also the Director of the Banner Sun Health Research Institute, in Sun City, Arizona, and joining me today we have an all-star team, and we have Dr. Davangere Devanand, who is Professor of Psychiatry and Neurology at Columbia University Medical Center in New York. He is also the Director of Geriatric Psychiatry and the Co-director of the Memory Disorders Clinic at Columbia University Medical Center in New York. Also joining us are Linda Gregory, who was introduced in the opening program video. Linda as a caregiver to her mother who was living with Alzheimer’s disease and has been experiencing hallucinations and delusions with her illness, and we’ll hear really a compelling story about how this has affected both her mother and her over time. So welcome, both of you.

We’re presenting this program on behalf of Acadia Pharmaceuticals, and as such, we are being remunerated for our time for engaging in this program today.

Let’s go ahead and begin. I want to first, I guess, turn to you again Linda and ask you about your perspective here. Can you share your story in some detail with us?

MS. GREGORY: Yes. Thank you, Dr. Atri. I am the primary caregiver for my mom who has Alzheimer’s dementia. In 2016 we originally started to notice that she was having difficulty with memory. She and I had a trip planned abroad, and at that time, we decided to take it and it quickly became apparent on that trip that she was having more than a little bit of difficulty with her memory. She couldn’t remember the hotel, directions, she didn’t know how to get anywhere, she didn’t know where we were going.

So when we returned, I talked to her about going to visit her internist and to see what he had to say about it. We visited with him, and he said he thought it was the beginning of dementia, and referred us to a neurologist. We followed up with a neurologist who confirmed that it was dementia, and wanted to do some tests.

So at the beginning of 2017, we returned to the neurologist who confirmed that it was Alzheimer’s dementia. We were all shocked. My mother most of all. She could not believe that diagnosis. At that point she was well enough that she was functioning on her own, so she was in charge of her own care. She chose not to really follow-up with the medications that the doctor gave her and it continued to progress.

By the fall, she was not able to drive and she wanted to go for a second opinion. We went for a second opinion and at that time they confirmed what the first doctor had said what her internist had said. She was progressing and clues to her dementia-related psychosis were beginning to be exhibited. She was becoming agitated and aggressive; things were worsening and I wanted a healthcare aide to come in to help support her, but it…that was not happening because at the time she was living with a partner who supported her choice to have no help.

So she started talking about kids being in her house and that they were just coming in and hanging out and playing and she wasn’t concerned, you know, and I was not that concerned at first either, because I really didn’t understand—you think you know what hallucinations and delusions are until you’re involved in it. So I thought she was just being confused and she had memories of my children coming there and that that’s what she was remembering.

But then one day my sister called me and said, “Do you know that mom’s at home and she’s washing all the bedclothes because the kids came to her house last night, slept over, made a mess and were playing cards till all hours of the morning?” I said, “What are you talking about?” She said, “That’s what mom told me.”
At that point, I knew that it was more than her just getting memories confused. And eventually those kids became a little boy and I tried to tell her that that wasn’t really happening, there were no kids getting into her house, I tried to rationalize it, and explain it, but she would just laugh and go, I know you don’t believe me but he’s there, and I would just go, okay, whatever.

As time progressed, he became mischievous and he was taking things and hiding things, and I was beginning to have a little guilt that I was feeding into these hallucinations because at that point, she was getting confused about things. She had a fetish with jewelry and she was buying lots of costume jewelry, so I did take her real jewelry. So I didn’t know she was thinking that was on the boy. I just… I wasn’t sure. And then eventually, she also had firearms in the house that had to be removed, and I had a lot of guilt about that…so…

The boy became dangerous and bad so she wanted to have locks put on the house, and I actually had to go to the locksmith and tell them you can’t put a lock on her bedroom door because she wanted a lock on her bedroom door. She was so fearful of this little boy and so sure that he was real.

By the summer of 2018, I really…she really needed to have aides come in and she did not want it, but I tried for six weeks to get an aide in there and every time the aide would come, I had to be there to make sure that my mother and her partner let him in. I had to stay the entire time because if I didn’t, they would leave, and things were escalating with each visit. So by the last visit she said to me, “Linda, I’m going to shove you down the stairs if you don’t get out of my house,” and the aide was getting upset; I was upset. They were upset, and it just really, really wasn’t worth it at that point.

She also thought my sisters and I were in collusion. She said, “You’re just trying to get my house; you’re trying to get my money. Get out of my house, I don’t want you here.”

So after that last time, I said, “Okay, we cannot do this because this is just not working.” And what happened was my sisters and I talked, and we decided we needed to secure some facility for her someplace for her to be. So we found a room in a memory care unit and so we knew in the event, whenever the next event was, if she had to be removed from the home, that we had a place for her to go.

DR. ATRI: Linda, let me stop you here because first of all to say how sorry I am that you went through this. That’s incredibly distressing, both for her and for you and your sisters. You’ve given us a lot here to talk around that is just so important.

I want to actually ask Dr. Devanand to comment on what do you, hearing Linda’s story, tell us what you think about the definitions of hallucinations and delusions and sort of tease these out in what her mom was experiencing.

DR. DEVANAND: Sure. I think Linda’s story is quite gripping because it explains not only the nature of the hallucinations and delusions, but how it impacts on her life, that’s Linda’s mother’s life, as well as Linda’s and her sisters’ lives.

So if we look at the first instance where her mother felt that children were in the house and was making the bed and doing other chores in response to that, those seem to be in response to hallucinations. She sees the children and takes action based on that.

The definition of a hallucination is the belief that there is a sensory stimulus, it could be a voice, that’s common, or a vision, in this case, seeing the children in the absence of any real stimulus. So sometimes it’s a little confusing because whether there was maybe something there and the person misinterpreted it, that we would call an illusion.

A hallucination is where there is really no stimulus. The children were not there and later on, the little boy was not there obviously, but in Linda’s mother’s mind, he was there. Then, it progresses to the point where he is a problem. So now, Linda’s mother is beginning to develop a paranoid delusion. What’s a delusion? A delusion is a false belief that is out of keeping with reality, and also happens to be out of touch with the person’s cultural or prior background, and this was clearly the case with the little boy who was creating problems.

With paranoid delusions like this, it may be just one type of delusion, or it may start extending to other aspects of the person’s life and it did because Linda’s mother felt that Linda was trying to steal her money and there were financial motives, that became a paranoid delusion further beyond what happened with the little boy, so it extends and is really a different delusion.

DR. ATRI: That was a great summary Dr. Devanand. How common, you mentioned it could happen. How common is it? In numbers per se.

DR. DEVANAND: Right, so, it varies according to the type of dementia. Hallucinations are quite common in the majority, maybe up to three-quarters of patients with Lewy body dementia.

In Alzheimer’s disease, which is the most common type of dementia, it occurs in about one-third of patients over time. In terms of other types of dementia like vascular dementia and frontotemporal dementia, hallucinations are relatively uncommon. They occur in barely 10 to 15% of patients.

Now, delusions, these paranoid thoughts and ideas tend to be a little more common in most dementias. In Alzheimer’s disease they can occur in one-third to half of patients during the course of illness. Usually these suspicious delusions that I described, they can also occur in the other forms of dementia including Lewy body dementia and Parkinson’s disease dementia, which sort of overlaps with Lewy body dementia. It’s again, not as common in vascular dementia and frontotemporal dementia, these suspicious types of delusions.

DR. ATRI: 2.4 million is the number I’ve heard quoted, would have, would be experiencing dementia-related hallucinations and delusions.

DR. DEVANAND: I should point out that the statistics you’re describing are U.S. statistics in terms of how many people have it.

DR. ATRI: That’s right. That’s right. I’ll go back to Linda. Now, sort of, in hindsight, you’re aware now how common this is. And you know, You have the knowledge about how common it is, but in hindsight, you know, tell us how your appreciation extend—you were touching on that, how your appreciation of this evolved over time, how it was affecting you know her behavior, your burden, your responses, and how was it affecting her care and wellbeing, really?

MS. GREGORY: Well, I wish I had better understood what hallucinations and delusions are, because you think you know until you’re in it and then it becomes very confusing. Like I said, I thought she was having memories. I thought she was just confused and remembering something that happened in the past. I didn’t right away, understand that it was a hallucination when my mother first talked about it, and so I wasn’t that concerned.

But as I began to understand what was happening, I realized that there was something to be concerned about there, and as it got progressively worse, I realized that I felt like I was really failing her, because I didn’t understand what was happening to her. So I mean that’s the very difficult part about not knowing, as the caregiver, what that delineation is of hallucinations and delusions. I feel like that’s a wonderful thing to stress as the medical care people providing service to the caregivers what they can anticipate, because I really just didn’t anticipate that. You read about it online and you think, like I said, you think you know, but you don’t until you’re in it.

DR. ATRI: Alright, so Dr. Devanand, I’m going to throw this to you. In these situations, in a situation like Linda described, how would you approach sort of the diagnostic algorithm, the medical evaluation, is it necessary? What are some criteria for defining hallucinations and delusions, and all the other neuropsychiatric symptoms?

DR. DEVANAND: I think the first point should be to make sure we are diagnosing dementia, which usually has been done by the time we identify hallucinations and delusions. Delirium is common in this age group, which may be severe, or it just could be low-grade delirium due to medication toxicity, urinary tract infection, metabolic changes. And that should be investigated to make sure that there’s no medical condition, which is worsening the patient’s psychiatric status.

Then, in terms of hallucinations and delusions, identifying them clearly, making sure the patient actually has that, and then assessing it formally with a scale, like a neuropsychiatric inventory, or if that’s going to take too much time, just documenting the details of the hallucinations and delusions. This is important, because, as the patient is followed over time, we can keep track of what’s improving, what’s worsening, what’s happening that’s new, and it gives us a better sense of clinical changes over the course of the illness.

DR. ATRI: I think that’s really, really important, really investigating and describing what are the behaviors, when are they happening, and investigating both medically and otherwise. It may not be an over UTI or overt pneumonia, but they could have dehydration. They could have sleep issues. They could have pain that they’re not describing, constipation. All those things we think about could be triggers of that. Boredom, fear, lack of stimulation, over stimulation, so the environment is really important. I think, Linda, it sounds like you guys did all that, and that was investigated.

So Dr. Devanand, I’d like to pose this question to you. So in addition to understanding hallucinations and delusions in older adults with dementia, what are the other neuropsychiatric symptoms that we should care about and why?

DR. DEVANAND: There are a variety of symptoms that patients can experience in addition to hallucinations and delusions. It’s really a broad range of psychiatric symptoms. They can be depression, anxiety, sometimes progressing to fear. They can be apathy, as well as sleep disturbance, irritability, disinhibition, where the person seems to be more impulsive perhaps. And a number of these symptoms can accompany psychosis, the biggest problems in terms of frequency as well as difficulty in management, agitation and aggression when they accompany psychosis. So these are the common targets of symptoms that patients have, and treatment strategies build around those symptoms.

DR. ATRI: Nervousness, anxiety, fear, agitation, aggression, these are a whole range of neuropsychiatric symptoms that you described, which are very common in individuals with Alzheimer’s disease and related dementias.

DR. DEVANAND: Now hallucinations and delusions are frequent. When older people with hallucinations and delusions in the course of dementia develop these symptoms, they tend to be frequent, persistent, and they may also recover…recur over time, often a few times a week. And some of them can persist in patients, and about half the patients with hallucinations and even a greater percentage of patients with delusions tend to have persistent symptoms over at least three months and even longer. Then recurrence is also an issue, cross-sectionally the frequency of psychosis is about 12% to 25% and during the course of a year, the frequency is higher, about one-third of patients get delusions or hallucinations during the course of the year. So these are common, persistent, and often recur during the course of illness.

DR. ATRI: And what do you think about the association between having hallucinations and delusions and the association with aggression? Is this a marker for it and does it increase or anyhow affect what you may experience later on?

DR. DEVANAND: Trying to understand the relationship, the causative relationship between psychosis and aggression is somewhat speculative.

DR. ATRI: I think one of the things I think about is that once I can detect that there are delusions and hallucinations that are occurring, to me, that’s not the same level of risk in that particular individual than other individuals. That tells me they’re much closer to sort of the ledge of falling over and becoming aggressive. Again, some of the numbers depend on which studies you look at. But, their odds ratios are also very…anywhere from three times more to eleven times more of becoming aggressive at some point.

DR. DEVANAND: Absolutely. That’s why identifying and managing delusions and hallucinations is so important for their symptoms themselves, for what they could lead to in terms of other symptoms. And as we’ve discussed, for both the patient and the caregiver, and actually the whole environment, because there are other people often impacted by these types of symptoms.

DR. ATRI: Yeah, I think it’s that analogy of this pot of water. Here you’re sitting in this hot water and the heats going up, and it’s changing a little bit at a time, and before you know it, its boiling, but you know as it’s going along, I think it’s really hard to appreciate sometimes and make those links.

MS. GREGORY: And that’s what was happening in my mother’s life. We were just waiting for that next incident that would have us put her in the memory care unit. We didn’t know what it was, but we knew she couldn’t stay at home by herself because she wasn’t capable.

Then when she went to stay with my sister, same confusion, fearful of what was happening, she was having delusions, she looked out the window, my sister lives in Connecticut, she lives in New Jersey, she goes to my sister, “I can see my house, it’s right there. Let me go home.” And my sister said, “Mom, that’s not your house,” and she got so agitated by that that she threw the phone at my sister. My sister has kids, they were getting afraid. Everything escalates in your life to a point where it’s just not doable anymore. That’s when she had to go into the memory care. And that was difficult in itself. They told me every time you think you have an answer you don’t.

She went into memory care and they said to me you’re going to have to not come for two weeks. It takes time for her to get adjusted to it. Well, she went in fine that day, the very next day they called me and said you have to come. And when I went, she was throwing cookies at the staff trying to keep them away from her. She was banging on people’s doors screaming fire, because this little boy was telling the staff what to do. When she saw me, she said, “Oh, Linda I’m so glad you’re here. Thank God, you’re here, I knew you would come. I knew you would help me.” I got her calmed down, got her to sleep, and it was all good and I left. And the next day they called me again: “She’s very agitated, you have to come.” I went, but their personalities, at least for my mother, is very volatile. You don’t ever know what you’re getting when you come face-to-face with her.

So when I got there that time, she said to me, “Where the hell have you been. You get me out of here, you have no right, they can’t keep me, I’m going to call the police.” She was trying to break the picture frames of our family that she had in her room; she’s trying to break them…break out the window with her hands, and she’s a little tiny woman, but she’s very strong. She grabbed me by the arm and she looked me in the eye and she said, “I would kill you. If I had a gun, I would shoot you right now.” And she’s my mom. Even though I know that’s the illness talking, that’s a very difficult thing to come to terms with because you’re still the child.

MS. GREGORY: Go ahead, Dr Atri.

DR. ATRI: You’ve just described some incredibly difficult situations emotionally, for everybody involved.

DR. DEVANAND: But, when this comes in to the picture, hallucinations and delusions, as well as agitation or aggression, it becomes too difficult to manage, and that’s what happened here.

So, Linda’s story describes a whole range of symptoms, but this is often what we see in Alzheimer’s disease and related dementias.

And the guilt is often there with family members, because they really want to try and help the family member who’s ill and do the best that you can to keep the person with you at home. But, as Linda experienced, it clearly was impossible, and that’s, obviously, a very difficult decision to make. I don’t know. Maybe Linda can expand on that in terms of your thinking about how to manage the situation.

MS. GREGORY: I’m not really sure how to manage the situation. I didn’t anticipate how violent she would be. When that happened at the memory care unit, she then went to a psychiatric locked unit for three weeks. I was not prepared for that either. I mean that’s the last thing I wanted for my mother.

It also breaks my heart, because people don’t want to call her. They don’t want to go see her. My own daughter, who’s 22 years old, she grew up with my mother. She spent a lot of time with my mother. She’s afraid. She’s afraid to go by herself, because she doesn’t know how my mother will react at times. Or, she’ll say something that will trigger one of those incidents. It’s very frustrating and heart-wrenching.

DR. ATRI: I feel for you, Linda, and I can tell you that from personal experience with my father that this is an incredibly difficult thing to anticipate and certainly to react to. I think you know being proactive, and this is one of the reasons you’re here sharing your story, being proactive may have resulted in a different outcome in some ways, because you know you didn’t have all the complete knowledge and appreciation, and that wasn’t provided to you.

So, Linda, in your case, had anyone talked to you, that this could be something that is really a marker for much more severe progression and that this could end up being so difficult to manage?

MS. GREGORY: No, I really had no idea. I mean I read what I read online. I just didn’t not receive a lot of direction from the professionals that I was involved with. I mean I think sometimes they just think you’re going to know or understand, because they’re so familiar with it, but I really did not anticipate what was going to happen, nor did I anticipate–I guess when you get the diagnosis you don’t think, okay, this is going to be over 10 years, and you don’t realize that the toll it’s going to take on you and your family. Because, for me, this is a grieving process all along. With each step, I’m losing a little bit of my mother. And Although I’m happy to see her and I’m happy when she has a good day, there’s another part of me that’s it’s very hard to deal with the thought that today is going to be better than any tomorrow, because its…you’re continually going down the road.

It’s very…I don’t know if it would have helped me to know this in advance, or if it would have just been more of a burden, but, over time, I’ve come to realize that this is progressive in terms of her coping with it.

DR. ATRI: Very, very real feelings that, you know again, well up when you know you’re faced with these situations personally.

MS. GREGORY: I just did not realize the impact of the hallucinations and the delusions and the agitation on the illness and on our lives.

DR. ATRI: Dr. Devanand, here’s a question for you. What’s the relationship between different measures of psychiatric and behavioral symptoms in people with dementia, and things like caregiver distress and burden, depression, and significant stress and distress on caregivers?

DR. DEVANAND: Well, the psychiatric and behavioral symptoms do tend to be associated with a variety of other symptoms, including depression, anxiety, and caregiver distress. A good illustration of this is the CATIE-AD study. The CATIE study involved a comparison of low dose of three antipsychotics to placebo, and it was done in a fairly large multicenter trial with 421 patients with Alzheimer’s disease. And one of the interesting things that was found is that although the entry criteria were psychosis or agitation or aggression, that patients often had mood symptoms, a variety of other symptoms, and that these were associated with caregiver burden, particularly psychosis and depression as well.

So when caregivers experience psychosis, the impact in terms of their experience, the distress it causes is quite profound, and is also linked to other symptoms. And in fact in the CATIE study, the caregiver burden, why it was different based on the type of management that was given to patients receiving those treatments. So caregiver burden is a huge problem, as we’ve seen with Linda, the psychotic features really increase her caregiver burden and her family’s caregiver burden quite dramatically, and that’s something to keep in mind as we deal not only with psychosis but the associated psychiatric symptoms that tend to go along with that.

DR. ATRI: So Dr. Devanand, I want to ask you what’s generally the impact of evolving and increasing neuropsychiatric symptoms and behaviors on transitions in care as far as setting goals from home to, let’s say, memory care or a nursing home?

DR. DEVANAND: Well, this has been studied with the neuropsychiatric symptoms focusing on psychosis in older people with dementia. One way to assess is with the Neuropsychiatric Inventory, or NPI, which covers all the symptoms we’ve talked about and Linda’s described, that we know that a 10% increase in the total NPI score, that means 10% worse in terms of symptoms, increases the odds of nursing home placement by 30%, essentially a three-fold difference.

DR. ATRI: I agree. So, Linda, I’m interested to hear, again, anybody explain to you–it sounded like you had a plan to have her at home, and you and your sister were doing that. But, for planning–

MS. GREGORY: That was short-lived.

DR. ATRI: What was that?

MS. GREGORY: That was very short-lived that we had her at home. Yeah, I don’t think that there’s–my expectations were unrealistic. And you know we quickly realized that, that we couldn’t manage her at home. I mean, I think you have to come to an understanding with yourself that there’s only so much you can do. And I mean just between the care I would have to have, people coming in. And again, like you were talking about, Dr. Devanand, that people have to be familiar with each patient, what the triggers are. You can’t just bring in people and say, okay, take care of this patient. It’s not like maybe if you have another illness, where you have some kind of diagnostic protocol. You do not with these patients. And that’s the part that’s really difficult, and that’s the part, I think, that caregivers don’t initially realize. And so, that’s been the part that I’ve had the most frustration with, that I think that I’m at a good place, and then something changes, and we’re at another spot.

DR. ATRI: You mentioned the mismatch between expectations and reality, and also resources at home. It sounds like you were—you know she was in psychic distress. You were afraid for her safety, it sounds like. And you just didn’t have the structure to provide this, and most people don’t.

So I think we appreciate that there are a lot of complexities in managing and thinking about neuropsychiatric symptoms associated with dementia-related psychosis. So, Dr. Devanand, I want to ask you, what are the current unmet medical needs in this space?

DR. DEVANAND: There are a variety of unmet medical needs because we don’t really have a great approach to managing these symptoms yet. Behavioral approaches are emphasized and there have been some methods used to manage these conditions. Then we have the problem of medication management.

And the final point I’d like to make is having a general approach to management, knowing that since there is no current medication approved by the FDA, we need to try a variety of sources with antipsychotics. There’s always been the problem of side effects, but about a decade ago this was amplified by the finding that mortality was also increased. In a pooled analysis of multiple studies, there was a 1.6 to 1.7-fold increase in mortality.

And what exactly causes it is not clear. There was thinking that it might be stroke, there may be cardiovascular illness, maybe lack of mobility leading to infections and pneumonia, but regardless of the cause, the fact that there is increased mortality is something we should keep in mind. And clinically, I always discuss this with the patient and caregiver before going to prescribing any of these medications, because this is an important side effect for which there is a boxed warning by the FDA.

DR. ATRI: Go ahead.

DR. DEVANAND: The side effects of atypical antipsychotics also go to neurological side effects, extrapyramidal signs.

DR. ATRI: And I have to comment that even in the face of doing this, the efficacy is still relatively low, so the effect sizes are not large. So you have certainly some risks involved with black box warning and side effects, and in all comers at least the efficacy is not large.

Linda, you’ve shared a lot with us today, and I think you know it’ll be really useful if you can sort of bring it together and kind of say you know in retrospect, what did you learn, and what would you like to share as a bottom line with other families, with healthcare providers, about your experience, and really the great needs that are there to help families and patients through this?

MS. GREGORY: I really didn’t know what I was anticipating when I started. That if healthcare professionals could, even if it’s not a hard-and-fast rule, provide a better outline of where the patients are going. I mean I had no idea. I was blindsided by so many things. Just the very fact that you may not know what’s coming, that today may be the best day that it’s ever going to be, so be happy with that. I hope for emphasis on the psychological part of this, because the loss of memory is very different than dealing with the volatile personality, the aggressive behavior, the hallucinations, the delusions.

I’ve said this before. I think psychiatrists play a huge role in the treatment of this illness, and we are sort of you know not getting anywhere with it, and it’s very sad, and it’s very difficult, and extremely stressful as a caregiver. And I know that there are people who care. I have met so many wonderful physicians, like yourself, that are very caring and that really are concerned about the caregivers. Give them as much information as you can, even if it’s a small chance that their loved one is going to experience it, because, really, the psychiatric unit, the medications, that all caught me very off guard, very off guard and unprepared.

So, I really hope that you know going forward that caregivers will be better prepared.

DR. ATRI: I think those are really good take-home points, Linda. I really appreciate you sharing them.

And Dr. Devanand, what are your hopes for the future, and what are your take homes from Linda in her mother’s journey here?

DR. DEVANAND: I share Linda’s concerns and suggestions, in terms of educating physicians, not only psychiatrists, but other physicians, internists, geriatricians, neurologists, in how to manage…how to identify, diagnose, and manage these conditions, dementia-related psychosis, as well as agitation and aggression. And having that knowledge will, I think, help providers address these concerns expressed by caregivers because, so many of these other factors in the environment, the behavioral problems, how to deal with it, which Linda has so beautifully described, in terms of the aides, her own experience with her sisters, where her mother should be or not be. All these things require a lot of effort. There are case managers and other professionals who get involved in this type of situation, and we really need a lot more of that, because the memory loss alone is something we try to address in trying to develop treatments for Alzheimer’s disease, but we have to pay attention to the neuropsychiatric symptoms. And, when they occur, it just takes over the entire situation.

I’m sure you’ll agree, Linda, that the degree of memory loss that your mother has is on your mind, but it’s really the back of your mind compared to dealing with these symptoms.

MS. GREGORY: Yes. Yup. That is absolutely right on point.

DR. ATRI: That’s a really, really good point. I’m a cognitive neurologist or cognitive behavioral neurologist, and I think about it as cognition, function, behavior as the domains. And really, the cognition can be supported in some ways. Function…daily function can be supported, as you’re providing all this. But, if the neuropsychiatric symptoms are there and the behavior is there, they can be resistiveness, aggression, these delusions/hallucinations. It makes everything else worse. So, really, that and really how it affects you, Linda, in your environment and your health and well-being, I think that’s the behavior and the care partner that I really try to focus on. Because, that’s the crux of it. That’s where the rubber hits the road.

MS. GREGORY: Yeah.

DR. ATRI: And that’s going to be the biggest determinant of how people do and how they experience, what their experiences of the illness are going to be like.

So, both of you mentioned sort of education and knowledge and the need for this. I think one of the issues is that both healthcare providers and also family members sometimes they don’t…they can’t access the relevant resources and information precisely when they want it. They don’t know where to go. I’ll put a plug in for a website called morethancognition.com, again, morethancognition.com. And this is an educational resource on basically dementia-related hallucinations and delusions, everything from prevalence to you know understanding the symptoms, even to the neurobiology, kind of the unmet need, the gaps, and you know this is available for any of the clinicians to look at, you know physicians, nurse practitioners. I’d like health professionals to understand through cases and other methods what really the impact of this is.

And you mentioned detection. I think before we can give care, we have to be able to detect and understand why it’s so important. So, this is a good resource.

Well, I think we’ve come to our time, and I want to thank you, Linda, very much for sharing this. It was very powerful, and I felt your emotions, and I think this will be a very, very good educational opportunity for our participants and also, Dr. Devanand, I thank you for sharing your wisdom and your knowledge.

Alright, thank you and be well.

Faculty

Columbia University Medical Center
New York, NY

Additional Contributor(s)

Alireza Atri

MD, PhD

Banner Sun Health Research Institute
Sun City, AZ
Caregiver and daughter of Betty, who is living with Alzheimer's disease dementia and experiencing hallucinations and delusions