Caring For A Loved One With Dementia with Dr. David C. Weisman, MD

Dementia is a disease / condition that is characterized by a decline in memory, language, problem-solving, and other thinking skills. This condition will affect a person’s ability to perform everyday activities such as memory loss. Is Alzheimer’s the most common cause of dementia?

Dementia is a very broad word and all it means is having a cognitive problem that makes one unable to carry out previous activities that can be difficulty with doing finances or calculating a tip, missing appointments, unable to drive without getting lost. Anything that changes you cognitively could do that. That could be a traumatic brain injury or a stroke could make one demented, so the word is so broad, it’s almost vacuous. What most people are talking about when they talk about dementing diseases is Alzheimer’s disease, so Alzheimer’s disease is this specific kind of dementia like a Rose is a kind of flower. Alzheimer’s is a kind of dementia. It accounts for about 80% of all dementias and we can make that diagnosis. When somebody comes to us with progressive cognitive problems that were gradual and onset and progressively get worse, it usually starts with memory loss manifested by repeating questions and not be able to retain information in short term memory, long-term memory, totally fine. Short term memory, very problematic. Gradually that gives rise to a dementia. Problems with preparing finance, doing finances, making appointments, taking medications, getting lost, and then we can make the diagnosis of Alzheimer’s disease.

Please join me and Dr. David C. Weisman, MD, Trialist And Neurologist At Abington Neurological Associates, as we talk about dementia care for our Baby Boomers from a Neurologist’s point of view.

Hanh Brown: [00:00:00] Well, hello, dr. Wiseman, good to have you here and thank you so much for your time. So please, share with us your story and, uh, what you’re doing with the elders in dementia.

Dr. David C. Weisman: [00:02:06] My name is dr. Wiseman, and I’m a neurologist in private practice.

[00:02:10] And I, my background is, did my neurology training at Yale. And then I did a two year fellowship at UC San Diego, mostly in trials and research. And then I took a job on the other side of the country in Pennsylvania, in Philadelphia. With the idea that we would start a site at, uh, within the practice and that’s exactly what happened.

[00:02:35] And so my current job is I am a. Trial, I do clinical trials and clinical research trying to develop drugs, mostly in the Alzheimer disease space, but also concentrating on other neurologic diseases like Parkinson’s disease and multiple sclerosis. But most of it is around memory loss and Alzheimer’s and other dementing diseases.

[00:03:01] So that’s what I do all day.

Hanh Brown: [00:03:04] Dementia is a disease, a condition that is correct derived by a decline in memory, language, problem solving, and their thinking skills. This condition will affect a person’s ability to perform everyday activities such as memory loss is, um, Alzheimer’s the most common cause of dementia.

Dr. David C. Weisman: [00:03:23] Dementia is a very broad word. And all it means is having a cognitive problem that makes one unable to carry out previous activities that could be difficulty with doing finances or. Calculating a tip missing appointments, unable to drive without getting lost. Anything that changes you cognitively it could do that.

[00:03:47] That could be a traumatic brain injury or a stroke could make one demented. So the word is so broad. It’s almost vacuous. What most people are talking about when they talk about. Dementing diseases is Alzheimer’s disease. So Alzheimer’s disease is this specific kind of dementia, like arose is a kind of flower Alzheimer’s is a kind of dementia.

[00:04:16] It accounts for about 80% of all dementias. And we can make that diagnosis when somebody comes to us with progressive cognitive problems that were gradual at onset and progressively get worse. It usually starts with memory loss, manifested by repeating questions and not being able to retain information in short-term memory.

[00:04:40] Long-term memory. Totally fine. Short-term memory. Very problematic. Gradually that gives rise to a dementia problems with preparing finance, doing finances, making appointments, taking medications, getting lost, and then we can make the diagnosis of Alzheimer’s.

Hanh Brown: [00:05:02] What kind of medication can lose memory.

Dr. David C. Weisman: [00:05:05] right now?

[00:05:05] It’s very limited. The medications that are currently available that have been around for a decade and more. They boost memory a little bit. They work. You almost need to have hundreds of people taking the medications and compare them with those who are not to see a very slight difference in testing, but they do work.

[00:05:30] So we use them. And the number one medication that’s used is a medication called or aerosol. And it works by increasing a neurotransmitter in the brain that makes new memories. So memories are more likely to be made again, it does not work well. So we’re working on other avenues. Other approaches. The problem with Alzheimer’s is it’s a continuum between very mild memory loss, but it progressively gets worse and it does so irreversibly until.

[00:06:07] Now we look like we’re on the brink of being able to develop drugs that really slow the disease down and make what could have been a decade or a two decade disease, much longer than that into 15 to 30 years instead.

Hanh Brown: [00:06:25]Has this drug been approved by the FDA?

Dr. David C. Weisman: [00:06:28] Well, it’s probably one company did submit to the FDA, but it’s hard to predict what the FDA is going to say with approval or not.

[00:06:39] The data is probably not robust enough for, uh, a lot of conviction behind the drug and they may need to do an additional study. For it to get approved, but if it gets approved, then it would be in 2020 at some point in 2020, probably later in 2020. And that will revolutionize Alzheimer’s disease. As we know it.

[00:07:06] How do we develop drugs in Alzheimer’s? Well, We’d take people into a trial screening, they screen into a trial and they either get a drug or they get nothing. They either get the real stuff or nothing. And we compare the groups at the end of the study. If the people who got the drug do better, then we know that the drug.

Hanh Brown: [00:07:31] What are the side effects of the drug.

Dr. David C. Weisman: [00:07:34] to have different side effects? So some of the drugs have brain swelling for instance, is a kind of scary ish side effect. And the way that we monitor that is very carefully by performing MRIs at set periods while they’re receiving the drug. Um, and if we see any changes, then we hold the drug and wait for them to resolve.

[00:07:56] And, uh, otherwise it, you know, Different medications can cause different side effects. So we just monitor people carefully and record the side effects and other experiences diligently so that we know what the drug is causing versus what placebo or they just, the natural history of the disease can. Cause.

[00:08:17] So that’s part of the nature of these randomized control trials that are blinded. People don’t know what they’re getting. And they are randomly put in one arm or the other, and then we compare groups and that’s how we know things in medicine. So after heart attack, how do we know that aspirin prevents heart attacks?

[00:08:38] Well, we did a study people after a heart attack placed on aspirin. Didn’t get heart attacks versus a control group.

Hanh Brown: [00:08:48] So how long should one take the prescribed medicine before determining its effectiveness and whether or not one should continue?

Dr. David C. Weisman: [00:08:56] Well, the effects can be so subtle that I. And, and if your people are tolerating them well, cause it can cause GI problems, then just continue it.

[00:09:06] Because if you go off, if people go off, they might notice a decline in memory. So if people are tolerant well, and they’re very inexpensive, cause they’re on generic, then there’s no need to go off of them. Well, medically, it’s really easy to say that people with memory loss and provide produces a lot of problems at home.

[00:09:28] Should move to either assisted living or memory care facility. But that decision is very multifaceted and is contingent on other things. So for instance, conditional on how people are doing with what we call the neuropsychiatric problems that can manifest in Alzheimer’s disease. If people get very.

[00:09:52] Agitated. If they’re up at night, bothering other people, constantly picking fights, yelling, screaming, being upsetting. Then those manifestations are sometimes really difficult to control and require institutionalization for their safety.

Hanh Brown: [00:10:13]So, many people with Alzheimer continue to live, um, successfully on their own during the early stage of the disease.

[00:10:21] There’ll be a time when living alone is no longer safe. When people with dementia no longer understand their own safety, um, or can’t look after themselves, especially when they start needing 24 seven care family members and healthcare professionals will have to weigh in the risks of living at home, uh, versus, uh, an assisted living.

Dr. David C. Weisman: [00:10:42] That’s a medical judgment and it’s somewhat easy. The hard part is a financial stress because. This is not covered under Medicare insurance does not cover it. Very few people have long-term care insurance to pay for such things. So financial that facet of the decision is a really important one. And it’s very difficult.

[00:11:07] Um, for us to really get at that during an office visit. So financial considerations and also the culture of people, different families have different culture that surrounds this. Some people will say we will keep our loved one at home, no matter what, no matter what that’s really difficult for them. Um, And they do.

[00:11:36] They keep them at home re into the latest stages of the disease until hospitalization occurs. So I would say that it’s multifactorial decision resting on medical situation, the financial situation, and. Family culture.

Hanh Brown: [00:11:56] These are tough decisions, especially when you come from a culture that believe parents are to live with their children and the children are to take, take care of their parents.

[00:12:07] To the very end, I come from a family of 10 with multiple siblings who are physicians. A neurologist and a sociologist and family practitioners. And, um, they all have treated patients with cancer. Parkinson’s Alzheimer’s dementia. But when it came to, how are we going to take care of my mom? We could not reach a consensus of what to do.

[00:12:32] And this was primarily due to the family dynamics and cultural reasons.

Dr. David C. Weisman: [00:12:38] Every family has. Differences of opinion, that makes it really difficult. You have people who have great insight into it and people with less insight and in families that are big and chaotic and everybody’s at each other’s throats, it can be very acrimonious and difficult.

[00:12:58] And unfortunately someone has to grab the reins because the person with Alzheimer’s will never say it’s time for me to move into a memory care facility. I don’t know if that’s ever happened. I’ve certainly never seen it. No one has that insight and we’re blind to our own personal cultures as well. We have preferences our cultural and we’re blind to those decision-making processes within ourselves.

[00:13:26] You know? So some people get very indignant about even broaching this idea that mom or dad is. Becoming problematic and it may be a safety risk. So with different cultural norms and different preferences, it’s a very difficult thing to talk about in open and candid way.

Hanh Brown: [00:13:50] Knowing how to communicate to a loved one with dementia is very important.

[00:13:55] Um, we, as a family had to learn how to do that. We struggle to learn how to communicate and also come to a realization that, uh, this is the new way to relate to mom. So, so please share with us suggestions and how to communicate to someone with dementia.

Dr. David C. Weisman: [00:14:13] Well, in the beginning stage, I talk to people like they’re people.

[00:14:18] I mean, there are people, so they’re just people with memory loss. So there should be really no change as the disease progresses. It’s difficult. It starts involving the part of the brain that does language. So when people say. Give instructions. For example, you know, I’m going to go to the store and I’m gonna pick up some eggs.

[00:14:40] You know, they may not be picking up that you’re going to the store. They kind of, the meaning of the words starts to get eroded and. That can produce frustration and it can become, they can, people can get irritable. So I think what you’re getting at is like how to navigate those waters. And that can be really difficult.

[00:15:04] Yes. What I tell people is that. The part of the brain that hears meaning is affected. When I say the word pen, you know, it’s something that’s full of anger that you’re right with, but you know, that that was just sound waves at one point and your brain is picking it up, picking up in attaching meaning to those sound waves.

[00:15:27] When that part of the brain is damaged, tone is still maintained. So the difference between saying. Fire and fire that is different people hone in on that. So any frustration that you sort of send into the picture is mirrored and amplified back at you. So without intending to do so, people can be upsetting and distressing to the person.

[00:16:02] They’re just trying to talk to. And I, I get it. And I, I tell caregivers, once you figure out how to do this properly and achieve a zen-like ability to comfort, let’s tell me and we’ll bottle. It we’ll make a fortune because you can’t do it. You can not do it perfectly all the time with somebody in this condition.

[00:16:29] Um, But you can try, you can try to keep an even tone. You can try to keep it simple. Um, and you can put on background music and you can distract. You can always do those things. You can always retreat as well.

Hanh Brown: [00:16:46]You know, at times it feels like moving mountains to get your loved ones, to eat, to take medication, um, to do the basic day-to-day activities.

Dr. David C. Weisman: [00:16:55] It’s a brain disease issue surrounding pills is really common. I don’t like taking pills. I don’t want to take that. I don’t want to take that. I don’t need it. I’m not sick. What are you talking about? That frustration and stubbornness, when that sets in it is very firm and. I mean, obviously sometimes it’s mild, sometimes it’s severe, but when, when it reaches the point where people are talking about it, it’s automatically moderate to severe.

[00:17:29] And the best approach is to just retreat a little bit off of the immediacy, back off and say, what is the problem here? They don’t want to take a pill. Yeah, that’s pretty easy. So pills are bad pills or medication. Medication is bad. It means that you’re sick. So first of all, you can just call it a brain vitamin.

[00:17:54] That’s what I recommend. Just say time for the brain vitamin it’s a brain vitamin vitamins are great, right? Vitamins are harmless, and that can sometimes help, but even the tone of voice that you’re using to say this brain vitamin no big deal, right. It takes the kind of the threat out of it.

Hanh Brown: [00:18:12] Well, think about how the person may be feeling, try to put yourself in their shoes.

[00:18:17] What’s their emotional state. Um, are they relaxed, happy, anxious, or distressed? Are they calm? Frightened? Uh, do they appear that they would get angry or frustrated? You want to be aware of what’s um, what’s happening to them prior? Um, you talking to them, what’s their temperament and mostly you don’t want to come across as threatening.

Dr. David C. Weisman: [00:18:42] Yeah. So, right. So backing off, putting on some background music, taking a break, looking at old photographs, doing something that they like to do. Going for a walk. Those can all kind of set the stage for then coming out of different approach with a non-threatening Hey time for the brain vitamins. Right.

[00:19:08] I’ll take, I’ll take mine. You take yours. Here you go.

Hanh Brown: [00:19:11] We do that. You know, I’ll take a bite, you’ll take a bite. And, um, boy, I tell you, there are times, it seems like you’re moving mountains just to get

[00:19:20] your loved ones to do the little things.

Dr. David C. Weisman: [00:19:23] Well, exactly. And I say, don’t go to war. And, you know, recognize, you know, the only wage, a minor skirmish, if there’s a safety issue.

[00:19:34] So, you know, simplification really helps go to the primary care doctors and say, listen, do we really need the cholesterol pill at this point? Do we need to diligently control blood pressure? I mean, those are open questions. There are lots of medications. People are on. That they may not really need a good primary care doctor is like your best friend.

Hanh Brown: [00:20:03] For me, our entire family had to be educated along with the caregiver, um, of the changes that mom was going through, how to communicate with her, how to care for her.

[00:20:16] We had to come up with a schedule of who is to do what and when. And we will leave work, um, and come and see mom and take care of her. It seems like the entire family, um, was getting treatment. So to speak along with mom, what appears to be common sense at one time, it just isn’t anymore. You have to meet them where they are and you have to roll with it, explore or the imagination and the stories that they’re telling.

[00:20:46] And you’ve got to do it with love and patience.

Dr. David C. Weisman: [00:20:49] Right. And exactly, I mean, the idea that you’re going to be able to logically explain to somebody who has a brain problem, that this is what should happen and have that resonate with them is just wrong, wrong model. And instead disengaging intellectually, and in kind of coming around in of the emotional way is best.

[00:21:17] A better approach, more likely to work in terms of wandering behavior. That’s usually, there’s usually a why there, so why are they wandering? Why are they wanting to leave the house? Um, it might be angry, pacing and nonspecific, but it might be being anxious. Very treatable. It might be anger. Again, that’s somewhat treatable.

[00:21:42] It might be a delusion. They might think that the house is not their house or that things look unfamiliar or weird and they need to get to their house. And that’s also treatable, uh, kind of a delusional, false idea that that’s prompting them to leave. It’s not usually just like, I want to go to the store.

[00:22:04] Um, That’s not very problematic. And then caregivers who roll with it and say, okay, let’s go. Let’s get in the car, go around the block. Oh, look, we’re home again. Time to go, or let’s make a indoor shopping trip. Look, here we are. We’re shopping. That’s one way of handling that. But a lot of these things are treatable.

[00:22:26] A lot of the neuropsychiatric aspects of the disease are very treatable.

Hanh Brown: [00:22:31] Whether you are caregiving for someone in your family or whether you’re providing care professionally, you may need support yourself. Support groups, allow caregivers to vent in a group, setting with people who understand what one another is going through.

[00:22:46] It also allows caregivers to hear what is working and what is not. And perhaps learn about the local Alzheimer and dementia resources. Caregiving for someone with dementia is not easy. And there will be moments when professional caregivers may need a hand or someone to talk to professional.

Dr. David C. Weisman: [00:23:07] professional. And I think that’s good in memory care.

[00:23:11] Things are easier because it’s very simple and. The staff at those places, they’ve pretty much seen it all. So they’re able to roll with pretty much everything. And I think a lot of the upset, uh, the, the distress that caregivers feel is because they’re not used to the new normal someone who’s a little bit.

[00:23:40] Distant emotionally is much better able to deal with this kind of stuff.

Hanh Brown: [00:23:45] Yes. Having someone that is distant to a person with dementia may be more effective in communicating and getting them to do things. Um, so are you involved in working with senior living to carry on your research?

Dr. David C. Weisman: [00:23:59] I mean, people from assisted living can join trials, but if people are severe enough to get into memory care, then.

[00:24:07] You know, we’re not really recruiting subjects into trials from that living situation. Um, the clinical trials are really focusing on very mild memory loss folks with, um, even just annoying memory loss before the disease seemingly starts before we can even make the diagnosis of the disease. Before we can say with certainty, this is Alzheimer’s disease.

[00:24:38] There’s a prodromal state called mild cognitive impairment. And that’s where a lot of the research is focusing with mild cognitive impairment and very early Alzheimer’s for prevention while they’re ongoing trials. But, um, we think that sleep exercise and a heart-healthy diet is really good. So anybody with this in their family, um, should instead of doing anything online brain games or DNA testing, which is not useful, in my opinion, people should concentrate on exercising every day, getting a good night’s sleep and heart-healthy diet.

Hanh Brown: [00:25:20] So it sounds like there’s a way to slow down the decline of dementia, perhaps sleep, exercise, proper diet, uh, can help. Is that right?

Dr. David C. Weisman: [00:25:30] There’s very rich evidence that, um, sleep actually clears away proteins from the brain. What’s good for the heart is good for the brain. That’s what we’ve known all the time.

[00:25:43] I, every little paper that comes out what’s, whatever’s good for the heart. Good for the brain.

Hanh Brown: [00:25:49] That’s great. Is there anything else you would like to share with our audience?

Dr. David C. Weisman: [00:25:53] Well, I think that the future is really bright. We’ve come a long way. We can make a diagnosis clinically. We have great biomarkers at this point over the last really only five years where we can actually image the disease for clinical trials to make sure that people actually have the right sort of proteins.

[00:26:14] We now think that this we’re honing in on the types of the proteins that collect in toxic fragments. And toxic collections that cause the disease and we’re beginning to get rid of them from the brain. And I getting rid of them, that’s been tied with better outcomes, further trials are needed, but we are on the brink of a new era in Alzheimer’s disease where we can slow the disease down through.

[00:26:47] The mild stages because it’s a disease of aging. Many people will die with mild Alzheimer’s disease, as opposed to seeing the ravages of moderate to severe Alzheimer’s disease.

Hanh Brown: [00:27:02] Cool, Thank you for that. And do you need help with anything?

Dr. David C. Weisman: [00:27:06] Well, we’re looking for participants. I think that we’re a site and there are many, many sites like us.

[00:27:13] So if anyone has. Memory concerns that should be diagnosed. It’s very underdiagnosed. Uh, I mean, in general dementia and Alzheimer’s disease in particular, highly underdiagnosed. So if there’s a concern, see a doctor in terms of how to help really help yourselves by getting into a clinical trial. That’s I think a very good thing.

[00:27:40] Not just for the people getting into the trial, but also on a more global scale.

Hanh Brown: [00:27:46] Well, thank you so much.

You can follow David on LinkedIn at https://www.linkedin.com/in/david-weisman-59539ba

Abington Neurological Associates http://www.abingtonneurology.com/providers/weisman/

View other essays by Dr. David C. Weisman, MD:

(Essay: Specious Souls) http://seedmagazine.com/content/article/from_divided_minds_a_specious_soul/

V(Essay: The Evils of Football) http://seedmagazine.com/content/article/disposable_heroes/

(Essay: Buddhism and the Brain) http://seedmagazine.com/content/article/buddhism_and_the_brain/