DR. CUMMINGS: And Linda, I was struck by your articulation of a lot of unmet needs, particularly from educational point of view. So it’s not just the medication but it’s really understanding it. Some management help, that sort of thing. So what’s your view of the unmet need situation? MS. GREGORY: Well, I didn’t really know what I was anticipating when she got this Alzheimer’s diagnosis. So it would have been nice if the doctor had sat down with me and explained where we were going, even if it wasn’t a hard-and-fast rule. But to have a general idea of what kinds of things to expect or how to deal with them. It’s important—to me at least: It would have been wonderful if we could have—if people could understand that part of treating this illness is stabilizing it. Even if we’re not improving the memory loss, just to stabilize it so that—I’m sorry. It’s important to stabilize it, because the patient has to be stabilized emotionally as well. So when you have this instability in what’s happening physically, you’re constantly off guard. You can’t get any kind of emotional stability, so those 2 things kind of go hand in hand—at least they did for me. And as a caregiver, it was extremely stressful to see my mother always off-balance. You never know what’s coming, and your loved one’s irrational and irate, and it’s very frightening. I’d also hope that families could be better prepared practically to know what to do to better equip themselves for the future road that they’re going to have to go down. I don’t really know where I’m going from here with my mom. I just know it’s day-to-day, and I’m really grateful to have been here with so many people that care so much, because I really did not receive a lot of structure or guidance from the professionals that were caring for my mom. So it’s been nice to see that there are people out there who truly care about the caregivers, the families, and the patients.
DR. CUMMINGS: One of the things that you’ve made clear to us as we’ve gone through is that some of the delusions are falling directly on you. The examples that we’ve looked into: “You’re stealing my things; you’re going to abandon me; you’re not my spouse; you’re an imposter,” of course directed to the spouse. Or spousal infidelity: “You’re having an affair.” So these are all things that often fall directly on the caregiver. It’s amazing how often delusional content is directed at the caregiver, and I think, “Did you have that experience? Were you part of the delusion ever?” MS. GREGORY: Initially she was very concerned that my sisters and I were in collusion against her. Then she told me: “You just want my money; you just want my house.” She definitely thought I was stealing her things, which was really hard for me to balance, because there were things I was taking from her house. I took all of her jewelry, because she had this costume—she has a fetish with jewelry now, and she has all this costume jewelry. She had a lot of real jewelry. So I took the real jewelry. She had firearms in the house. I obviously had to take those.
MS. GREGORY: I’m just going to give you a little brief history about my mother’s treatment and about my role as her caregiver. Beginning in early 2016, we were beginning to realize—my family and I—that she was having some issues. She was having trouble balancing her checkbook, remembering how to get to places that were familiar to her, and we had planned a trip—she and I—to go abroad. When we were abroad, I didn’t let her go out of the hotel without me, because she just really couldn’t remember what the name of the hotel, what direction she was going, and it became apparent that it was a bigger issue than just normal memory. So when we came back, I made a doctor’s appointment with her primary care physician so that she could go and be evaluated. He met with us. He said that he felt that she should see a neurologist. So he referred us to a neurologist who said she had dementia. She then went through some testing to rule out any other issues for the dementia, and when we went back to see her in early 2017, she said it was Alzheimer’s dementia, and that diagnosis was devastating to all of us. But my mom had a lot of trouble even believing that it was true. But nonetheless, we were on the path. Then she started telling me that there were children in our house and they were coming in, and at first I thought that she was telling me that these kids were in her house so that she could avoid telling me that she forgot to do something. Or she forgot where she put something. I also didn’t know if she was just having a memory, because I live close by and I have 4 children. They’re all grown now, but I didn’t know if she meant that they came in. I really didn’t know what was going on, but I wasn’t that concerned. But as time went on, it became a little boy, and she began to be afraid of the little boy, and I tried to tell her, “You know, Mom, I don’t believe there’s a little boy,” and I’d say, “So don’t tell me about the little boy,” and it was kind of a joke. And she’d say, “Okay, that’s fine. I don’t know anything about the little boy is not real,” but I knew she believed it. So then after she started talking about this little boy, it became much more difficult for me to tell her that this little boy wasn’t there, because 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. By the end of, like, 2017, she was becoming aggressive and she’d get agitated real easily, and the condition just seemed to me to be progressing further. By the middle of 2018, it was becoming apparent that I really didn’t have a choice. They really needed to have someone in there. So for 6 weeks, I tried to have an aide come in. I needed to be there every single time, so my mother wouldn’t slam the door in her face or leave her sitting outside, and then I had to stay because my mother would have left the house and the aide would have been by there by herself. So after 6 weeks, it kind of culminated in this event that my mom grabbed me and she said, “I’m going to shove you down the stairs, Linda. This is my house. Get out of here. You can’t tell me what to do!” We quickly knew that we couldn’t handle this. So we decided that she would have to go into memory care. My sister brought her down, and we took her, and the first day went great. And they said to us, “Don’t worry: 3 weeks, about, she’ll make the adjustment.” Well, the first day went okay—that we dropped her off, she stayed. Then the next day they called me, and they said to me, “You need to come over, because she’s extremely agitated. She is banging on people’s doors, screaming, ‘There’s a fire!’ People are getting very upset. She’s throwing cookies at the staff. She won’t let anyone near her.” And when I got there, I got off; it was like a war zone on the floor. I couldn’t even believe what a little woman could do this much disaster. And so I was able to get her calmed down. She was happy to see me. She was like, “Thank God, you came. I knew you would come. I knew you would believe me.” Next day they called me again, only this day I go in there and she was, like, “Where the hell have you been?” because she had no filters by now. She said to me, “You need to get me out of here. I am not staying here,” and she was trying to break picture frames with her hand and punch the window out. And they said to me, “If you stay with her, she can stay on the unit,” but already this was way beyond me being capable of helping her. So at the point that I really knew I had to go, she grabbed me by the arm. She said, “I’d kill you. I would shoot you if I had a gun.” And I didn’t even know how to respond to that, because even though I knew it was the illness, she is still my mother, and when you’re the child, you still don’t expect that to come out of their mouth. So, from there, I took her to the ER, and she was admitted to a psychiatric hospital, where she stayed for 3 weeks, until they could get her settled. At that point, when she was better, she came back to the memory care unit with 24-hour care. We had around-the-clock nursing for her until she got settled back in.
DR. SMALL: Well, it has a huge impact. I mean, we’ve heard how disturbing it is for the patients and for the caregivers. And caregiving is not an easy job. We know there’s a high risk for depression. They lose time. It’s like working 3 or 4 jobs at the same time. And this only makes matters much worse. And then there’s the physical danger we’ve been talking about. If somebody’s psychotic and agitated, they get up quickly; they can fall, break a hip, hit their head. They can lash out and injure someone else. So it’s—it’s really quite a disruptive experience for everyone.
DR. SMALL: Let me just say there’s a lot we don’t know. But we do know that the dopamine system is involved with psychotic experiences. And also, from brain imaging studies using PET imaging, we know that often the frontal lobe of the brain shows lower glucose metabolism in these patients. And that makes sense, because the frontal lobe is the thinking brain; it is the executive branch of the brain, and so the filter is gone as a result.
DR. DEVANAND: Alzheimer’s disease: Maybe 1 in 4 or 5 patients do develop delusions of the type we talked about, like stealing—“Somebody is stealing my things” and “My house is not my home.” And infidelity is quite important when it comes to a spouse, because that can be almost impossible to manage, because it becomes a very persistent and disruptive delusion. Hallucinations as an initial symptom are really quite uncommon in Alzheimer’s disease. They do occur in Lewy body dementia. So if the first symptom a person presents is a hallucination, I start investigating to try to figure out what’s going on. As the disease progresses, the psychosis can persist. But sometimes it just comes and goes. So there could be a period of a few months where they’re quite paranoid and delusional, and then, for a period of time, that seems to go away; but it can come back. And we really don’t have a good understanding of why it fluctuates over time like that. And so, being aware of it, monitoring it—especially for family members—can be quite difficult because of these variations over time.