Alzheimer’s Disease — Managing Stages of Dementia | NEJM

When it comes to cognitive diseases, everything is about function. Function is how we define the difference between mild cognitive impairment and dementia. So mild cognitive impairment was not a phrase that I even had ever heard of once I was diagnosed with it. I was teaching at the time and I was running into problems where I was forgetting what I was teaching. I went from being a CEO in finance and real estate to having a first grade level math equivalency. With mild cognitive impairment, you're having symptoms, but you're functionally independent. With dementia, you have a functional impairment. There's something you have previously done that you no longer are able to do. As a geriatrician, we focus on instrumental and basic activities of daily living. Now basic activities of daily living are affected much later. You have to turn in bed, you have to stand up, you have to walk, go to the bathroom, use the bathroom, bathe, brush your teeth, dress, and then eat. Your instrumental activities are much more complicated. Making appointments, managing your medications, managing your finances, driving, cooking, cleaning, using technology, those are the ones that are more likely to change as you're going from mild cognitive impairment to dementia. Well, hello, Mr. Bester. So when someone that you're evaluating with mild cognitive impairment, it's really important to focus on, are you managing your medications? Are you driving okay? Are you making your appointments and keeping your appointments? Because not everyone with mild cognitive impairment progresses to dementia. Those functional changes are what defines having dementia. So you want to catch that early because you'd start medications sooner, you'd send them to support groups, you'd get them involved in the community organizations. There's just a lot that can happen that's triggered with this change in the stage. At the time that I learned that my father likely had Alzheimer's disease, he had mild cognitive impairment, maybe he had mild stage dementia, but we thought of it as he has Alzheimer's, and you immediately go to the end of like, a person can't do these things, but really in truth, they can. So we prevented him from doing the things he could do with help. In the early stage, the key things are making sure they're on a routine, they're socially engaged, their physical health is well, their mental health is well, and that they're connected to care. I think that there's small ways that I see in my family that they're on my team. They will just simply send me a text message, you know, Mom, remember, I can't do this tomorrow, or something like that, and she wouldn't have done that earlier. Support doesn't mean they have to be of blood relations. I had a friend come over and I said, you know, I need to put some food in the freezer that I can just pull out and help me make some meatloaf. Alarms, Alexa, you know, Uber. And I also keep a pad by my bed to make a list of the things that I know I need to do tomorrow because I would forget otherwise. So I think the kind of listing stuff really, at this stage anyway, it helps a lot. The power of an early diagnosis is that a person can make clear what they wish. For instance, do you want to be at home? Most people say yes, but at what point do you feel like it would be okay for your loved one to have you in a care facility instead of at home? I think it's important to have advanced directives. They want a feeding tube, they want resuscitation, have a living will, have power of attorney so someone can speak on their behalf and understands their wishes. For a lot of families, this is totally new to them, many times not having a good understanding of the medical terminology. So it is important how it is presented to the families, a conversation with the physician as well as if there's a nurse or social worker available as well. The first year of post-diagnosis was getting what I call our ducks in order. Everything was about planning and making sure that we could be done with that so that they could live. Erring on the side of autonomy, especially earlier in the disease, to me makes the most sense. That's a tough conversation for a family member that's stressed and worried because you have to talk to them about their concerns, which makes sense too. For every function that we address, there's a safety issue. So with medications, it's not taking them or taking too much of them. For finances, it's being scammed or missing your bills. For driving, there's obviously accidents, but even appointments, missing your doctor's appointment. Guns and hunting rifles, we worry about a situation in which you might be confused and use this weapon. Home safety, a person could be leaving their stove on. Even something as simple as, do you feel comfortable leaving your loved one at home when you go out? Is he or she safe to be by themselves? As a provider, it's important to discuss those safety issues and possibly make the needed changes where we know error on safety versus autonomy. In the moderate stage, there is a need for more support, making sure that they're able to get dressed, take care of themselves. Through the course of my personal and professional time working with people with dementia, some of the big things that I've learned is to be slow, having good eye contact with them, being aware of what your body language is. You might be crossing your arms and that might come off in a negative way. Simplifying what you're saying and breaking stuff down into step-by-step. With my mom, if I just said, get undressed, she wouldn't know what to do. She would just kind of stand and look at me. So instead, I was like, okay, take your shoes off, now take your socks off. If I put it into simpler steps, then she was a lot more able to follow what I was trying to get her to do. In that moderate stage, sometimes there has to be some hard decisions. It may be a time to actually activate the power of attorney for healthcare. And they also may be transitioning into assisted living. I would say one of the next hardest decisions after that first diagnosis is, when is home not enough? I felt like I was a caregiver for so long and I know the rest of my family felt that way too. Once she was being taken care of by other people, I finally felt like I could be her daughter again. It's really important that doctors explain to families that the body is no longer able to hold on to nutrients. There may be difficulty in swallowing, incontinence has increased, many times there's a breakdown in skin, there's a decline in language. Some families, they may make the decision that they will keep them at home. And if you make that type of decision, then the physician should let them know, you are going to need more support. They may discuss skilled nursing or that person may be a potential candidate for hospice. So these conversations are really critical. It's not an illness anybody wants, it's certainly an illness people are afraid of. But it's something they can learn to manage, or they have to learn how to manage as best they can. And I make that point of what's really most important is the day-to-day management of the disease and then the medicine can be helpful on top of that. When I talk to patients about medications and how I'd encourage primary care to talk to patients is to set realistic expectations. It all comes down to the stage. If a person has mild stage dementia, acetylcholinesterase inhibitors slow the natural breakdown of the chemical signal in your brain that helps with memory and attention. I start by saying you might feel like your attention is better or your memory is at least not as bad. I frame it that way. You might not notice anything. I then follow up with side effects, stomach upset, diarrhea, nightmares, slowed heart rate. And then I think it's a matter of offering. How do you feel? Based on what I've said to you, do you want to try this medication? The main benefit is that the majority of people who are on it stay stable longer. Mild change is a good thing in a progressive condition. When they're in mild stage, I prepare them. I'll say when you progress to moderate, there will be a different medication for you. When they get to a moderate stage, we suggest adding memantine. It's an NMDA blocker. It is to maintain your day-to-day function. There aren't that many side effects, so I list a couple of them. And then I'd say to them, you know, when you reach the moderate severe, I think we need to talk about getting you off of these medications. The side effects are not worth the potential benefit. You get to make the call, but that's a conversation I'd like to have when this point comes. People have probably heard about the new treatments, aducanumab, dananumab, and lacanumab. These treatments are only approved for people with early Alzheimer's, but it looks like there is a mild slowing of memory loss, and people stay in a milder state longer. But it's not a large effect. The conversation is about, well, where are you exactly in the course of this condition? Do you have mild cognitive impairment? Do you have mild stage dementia? If you're moderate, moderate severe, I will say I'm sorry, but this medication is not for you. If you do fall into it, I talk about the success of these drugs removing the first protein of Alzheimer's disease from your brain, and we think that's incredible. How that impacts you as the person, that's being debated, or that's at least not as impactful as we would like it to be. So I present it as there's some good, there's some bad. Let's think about side effects. Let's think about practicality. They're expensive. You'd have to go into an infusion center once or twice a month. And there's risk. The main risk is amyloid-related imaging abnormalities where people can get fluid shifts in the brain. Usually there are no symptoms associated with this, but there can be. They can be really serious and even fatal. You have to be willing to have safety MRI, especially during the first six months of treatment. People need to weigh that risk against the potential benefit, and their doctors need to help them. When people focus on the medical side, it's because it's something we know, and it's easier to fall back onto something that is more objective. Medication, use it or not. A blood test, abnormal or not. There's a lot more nuance to the more important things. Each stage of this disease provides its own unique challenges, and it's progressive. And so it's a progressive amount of increasing work for a care program. The journey was so long with us. It was just a long haul. Cumulative stress is a very real thing. The story of the care partner that just does everything flawlessly is not real. And I feel like that does a disservice to the real caregivers out there, because it sets this unrealistic standard of what things should look like. The real aspect of caregiving is that it's difficult, and that it fluctuates. In some moments you're amazing. In some moments you're not. At that time, I did not know anything about dementia, Alzheimer's, anything like that. I knew nothing about that. But I knew, I can't stand this. I think if I were to go back and do it again, I would practice a lot more self-care throughout the journey as a caregiver. What I hear from a lot of caregivers is that the physician never asks them how they're doing. In the end, it's about the well-being of the two people, the care partner and the person living with dementia. We have to have that conversation. And so I always frame it, and how can I support you? Be honest with your doctor, so that they can get you to the right resources. Because being a caregiver to somebody that's with dementia, you get worn out. And so, it's not only going to help them, but it's going to help your mental capacity to be able to handle what they're going through. Because it's a difficult road. There are a lot of inequities in access to care. Home health care, around-the-clock care, nursing home care is very expensive. It helps if you have financial resources. That's not true for many people. So the fail-safe mechanism is Medicaid. If someone requires nursing care, then the state and the federal government pay for that. But that's not a great strategy, in my opinion, because people need care right from the get-go. When it comes to just overall goals of care and advanced care planning, built into that care plan must be a way of building support. There's certainly support available through the Alzheimer's Association, information, training, support groups. There are services through the Department of Aging in most states. And a lot of churches help families get resources. When we look at how many families say that they don't know about educational programs or they don't know about access to health care resources, it's really important that physicians know about resources that are in the community. It's been years since my father passed. And I think the experience defines who I am professionally, and I think a lot personally. With patients, it allows for me to recognize the big picture and that nothing is fixed and that there is no right way to do it. And so it allows me to have that space to just be there with them and offer what I can.