“What I couldn’t find is how someone dies from Alzheimer’s. What do those complications look like in an Alzheimer’s patient? What does it mean for the patient and their family?” Those are the questions Jasja De Smedt Kotterman sought answers to at the end of her mother’s life, a process she wrote about in the article, “What I Wish I Knew Before My Mother’s Alzheimer’s Death.” Although she consulted countless sources and consumed as much information as she could, De Smedt Kotterman was still surprised by the events of her mother’s last days. She was searching for an answer to a question many caregivers think about: How do you die from Alzheimer’s?
Dr. Liz Sampson, M.D., an expert in end-of-life-care, suggests there are a lot of societal misconceptions about death. According to Sampson, television programs often portray death as something that happens instantaneously after an accident or illness, causing people to forget that death is often a process that can take weeks or months.
- Because Alzheimer’s patients may pass away from other causes before reaching the final stages of the disease, Sampson said people do not think about Alzheimer’s the same way they think about other terminal illnesses.
- These misconceptions may cause caregivers to feel unprepared as they witness the drastic changes their loved one goes through during the final stages of Alzheimer’s.
It is important for caregivers to understand what their loved one will go through during the final stages of Alzheimer’s to prepare for this experience, said De Smedt Kotterman and Sampson, whose father suffered from vascular dementia. Being Patient spoke to them about what happens to the brain during an Alzheimer’s death, answering questions like, “How do you die from Alzheimer’s?”, “How do I recognize the final stages of Alzheimer’s?”, and “What should I ask my loved one about before they reach the final stages?”
Being Patient: Jasja, why did you feel it was important to write an article about your experience with your mother?
Jasja De Smedt Kotterman: I wrote it to help me deal with the grief of my mom’s passing. It was almost a cathartic experience to be able to put it down on paper. During the last year of my mother’s life, I had been really struggling to understand what was going to happen to her in the last few moments, and how I should prepare myself and my family to deal with that. So I thought sharing that experience could be helpful for others and for caregivers who are going through the same thing.
Being Patient: Dr. Sampson, what happens to the brain when someone is dying from Alzheimer’s?
Dr. Liz Sampson: It’s a really complex issue, and I think one of the problems is that often, we don’t perceive that dementia and Alzheimer’s can be a life-limiting illness. Because of that, it’s not discussed in the same way as when someone is diagnosed with cancer or another terminal illness. I think everyone’s different, and it’s an individual journey for people. There’s an added layer of complexity because lots of people with dementia or Alzheimer’s disease who are elderly might not even live to the advanced stages of dementia. Many people will die from other causes, such as heart failure, stroke, accidents and all of the other things that we’re at risk of dying from when we get older. We know that roughly a third of people with dementia will reach the more advanced stages and die in those advanced stages.
During the last year of my mother’s life, I had been really struggling to understand what was going to happen to her in the last few moments, and how I should prepare myself and my family to deal with that.
Alzheimer’s affects parts of the brain that control our more basic functions. For example, in the early stages of dementia, people have memory problems, and in moderate stages, they might have difficulty with relating to other people, relationships, and perhaps their behavior and distress becomes an issue. Then as the brain cells die off more quickly, more fundamental parts of the brain become affected—the parts of the brain that coordinate movement. That may mean that someone is unable to move around and they may need to be in bed all day.
A really fundamental issue is when the part of the brain that coordinates our swallowing becomes affected. We all take swallowing for granted; it’s a reflex and something we do without thinking, but it’s a complicated process. In the more advanced stages of dementia, the brain becomes unable to coordinate what the mouth’s doing—how swallowing works—and then food can go down the wrong way and cause pneumonia, or things like that. As people become unable to move and less able to shift positions, they may be more at risk of bed sores and gradually, the body just shuts down as the brain becomes more and more affected.
It’s a difficult process because it’s very, very unpredictable. And there’s little research in this area, compared to the research that we have on the early stages of dementia. I think it’s important that we acknowledge there’s uncertainty, and as professionals, one of the major things that we can do is say, “Well, we don’t actually know how this is going to pan out, but we will work through it with you and make sure the person is comfortable at all stages.”
Being Patient: Although Alzheimer’s presents itself differently depending on the person, are there signs that death is imminent in the final stages of the disease?
Dr. Liz Sampson: People progress differently, but I think one of the key signs that someone is reaching the end of their life is when they stop wanting to eat and drink. Whether they’re going to pass away in a week or a month, that’s often the person saying, “I’ve had enough. I don’t want this anymore.” It can be very upsetting for carers and relatives, but studies on patients dying from other illnesses show that it’s not a horrible process, and the last thing you want to do is to start tube feeding people because that’s not really shown to prolong life; it’s about quality of life. If someone stops eating and drinking, the memory has become so bad that people don’t know what food is anymore, so to them, food in their mouth is like a foreign body. They might spit it out, not want to swallow it or forget how to swallow. When someone reaches that stage, that’s a sign that things are probably more imminent. Chest infections or a serious illness can often be a sign as well.
Being Patient: Jasja, thousands of people around the world have read your article. Many people commented, “I had the same exact experience, but I wasn’t prepared either.” After going through this experience with your mom, what do you think is important to know about the final stages of Alzheimer’s?
Jasja De Smedt Kotterman: With my mother, the last stage went really, really quickly. Interestingly, we had been told that she could be in Stage 7 or in these last stages for six months, one year or even two years. However, I think from the time we realized that she moved from Stage 6 to 7, until the time that she passed away, it was about three months. One of the things that the doctors and caregivers in the home told us was, because my mother was on the younger side of someone with Alzheimer’s, it progressed more quickly than if she had been older. The caregivers in the home were surprised how quickly she progressed into that last phase.
It was really important for the family to be with my mother at that last phase, and I think we were lucky that we got good help from the doctors and caregivers, who gave us timeframes of how long it would take and expectations of what would happen next. But like Liz said, we couldn’t be given an exact timeline. However, they said, “These are probably things that will happen, and not always in the same order.” That was surprising to me.
The first time I noticed that something was going on with my mother was when she had difficulty walking; my mother was a very fit person, so the fact that she was having trouble walking was a bit of a shock. Then, she became less mobile and I think her circulation problems started. After, the bed sores started, which showed up as blisters on her ankles. Very quickly after that, she just stopped eating—well, she just was having real difficulty eating and I almost felt as if she couldn’t figure out what to do with the food in her mouth. She would chew it for a long time and then she seemed to be almost afraid to swallow. Next, she just refused all food and water, and it was really hard for us to feed her, so that went on for about a week or two. We were really scared that she was just going to wither away and stop eating, so it was great for us when she did start eating again, but I think that was when she swallowed food the wrong way. We were told what to expect, but it was frustrating that it wasn’t more specific. As a family member, especially if you’re traveling from far away, you just don’t know how long to plan for, or to take time off from work, so that was difficult, but I understand that everybody is different.
Being Patient: You write that when your mom was administered morphine, you didn’t realize that was the end. Can you tell us about that?
Jasja De Smedt Kotterman: Right, and I don’t know why it didn’t click with me. I somehow thought that with morphine, you would still be conscious, but not in pain. Actually, it’s a question I would love to ask Liz as well, because I had heard of people being on morphine to help them with pain, but that they were still able to talk a little bit, so what really surprised me was that she just never regained consciousness after that.
Being Patient: Yes, is it common for someone to be administered morphine and to pass away shortly after that, Dr. Sampson?
Dr. Liz Sampson: I think it’s very difficult to tease out what the morphine’s used for, which can make people sleepy and sedated, but also more comfortable. Is it the morphone, or is it the fact that the person is dying and that’s why they’re not conscious? But they’re comfortable on the morphine. I would say the main goals of caring are to keep someone comfortable and to alleviate distress. It can help them breathe more easily.
It’s a very different situation when you have a younger person with cancer who is on a small dose of morphine, but he’s up and about and able to talk. But when someone’s in the very advanced stages of dementia, it could just be that they’re going into the process of dying. We have this concept of dying from programs like ER and the media that we’ll suddenly clutch our chest and keel over, and that will be it. What we don’t see in society nowadays, and what people understood one hundred years ago when more people died at home, is that dying is a process, and it can be a very slow journey over a few days or a week, as our body’s gradually shutting down. That’s an absolutely normal dying process, but we very rarely see that or talk about that in society in general, not just related to dementia. It could be that that’s just what’s happening anyway, and the morphine is just alleviating any extra distress that’s associated with the dying process.
At a very basic level, even someone with advanced dementia is aware of the atmosphere around them, so if people are distressed around them, the person will pick up on that.
Being Patient: What questions should people ask their family care doctors about this stage of life?
Dr. Liz Sampson: The best questions to ask are, “How can we keep this person comfortable and maximize the quality of life that they have today, and for the next few days?” and “How can we best maintain their comfort, their dignity and what they would want?” I know it’s really difficult if you’re abroad and you need to know timeframes, but it’s important not to get caught up with this “How long have we got?” question. It’s about focusing on the person and their needs, their previously expressed wishes and maintaining their comfort and the quality of the life that they have left.
Jasja De Smedt Kotterman: I’d like to add something to that. That’s absolutely correct, at least from my experience, but what I found really helpful, which I asked the doctors and nurses was, “What could I do around my mother to make her more comfortable?” and “At what point does the medicine not provide all of the comfort that she needs?” Because you are waiting there and you feel a little useless, and that was frustrating, so the doctor told us something that was very helpful: Take a Q-Tip, put it in lemon water and just rinse her mouth so that she gets some humidity and it keeps her mouth fresh. We took turns doing that, it kept us busy, and just held her hand and talked to her. We played a lot of music, which was really important for my mother, and we enjoyed that. The medicine helps to an extent, but we wondered what else we could do as a family and caregivers.
Being Patient: Jasja, were you able to gage how much pain your mother was in, in that final stage?
Jasja De Smedt Kotterman: No, my mother was a very strong person, she had a very high threshold for pain, and we were always concerned about her comfort. We asked her if she was in pain and she’d always say, “No, I’m fine,” but it was that last day before we administered the morphine where she was pointing to her chest and nodding when we said, “Does it hurt?” We could tell that she really was in distress then. But once the morphine was administered, it was hard to tell. She had very labored breathing and I was worried that was causing her some stress, but the doctors and nurses told us that was kind of normal, and that she probably wasn’t feeling any discomfort. It was two and a half days that we held vigil with her on the morphine, and I think she was comfortable the whole time. That was really comforting.
Being Patient: Dr. Sampson, do researchers know how much someone who’s dying from Alzheimer’s can understand when loved ones speak to them?
Dr. Liz Sampson: We know very little about where people are. You can get very hung up thinking about medical things, but at a very basic level, even someone with advanced dementia is aware of the atmosphere around them, so if people are distressed around them, the person will pick up on that. It’s about thinking holistically, so they may preserve certain senses. Their sense of smell may be very well preserved, which is why using aromatherapy—despite that there’s no real evidence that it helps dementia patients—is comforting. It’s helpful being surrounded by nice smells or music, which reach the inner parts of our brain and trigger basic emotional responses in us. There’s good reason to think that the sound of a familiar voice or holding someone’s hand is going to register with them on some level. For caregivers, it will also help them with their grief. There’s a famous woman in the U.K., Cicily Saunders, who started the modern hospice movement. She said that the memory of how we die continues in those of us who live on, so in a way, we want to provide a good death for the person with dementia, but doing all of those other things is important because then relatives and carers will have a different, and hopefully, better, grief experience than they would’ve had otherwise.
Being Patient: Is community-based care a better option than taking care of someone at home in their final stages?
Jasja De Smedt Kotterman: My mother didn’t die at home, she died in a care home, and I think there was no other option for us. We wouldn’t have had her in our home. We just knew that very importantly, we didn’t want her to die in a hospital. It was important because we had some support for us as well. The nurses gave us meals so we didn’t have to worry about that. I almost felt like we were being taken care of as well, which was really appreciated. You could always ask for help if you needed to. The last few days before she was on the morphine, we were just trying to figure out different ways to get liquids into her, so we’d ask for advice. The doctors weren’t always around, so it was helpful to talk to other people in the home. I think it’s good to have people with experience around you who can guide you through the process.
Dr. Liz Sampson: I think it depends on what country you live in and what services are available. Ideally, I think everyone wants to try and keep their relative at home, but sometimes, it’s just not possible. I think we also don’t really want people to die in hospitals, but actually, we can get very hung up on the place of death, rather than thinking about the quality of what’s given there. My father had severe vascular dementia and he died in a hospital, but he had a really good death, so it’s thinking about the comfort and care provided, rather than the actual place. The problem is that relatives can feel very, very guilty that someone’s in a care home or hospital and that’s another burden on them, whereas if you think about providing the best possible comfort wherever you are, you become less worried and upset by the fact that someone has to go into a care home.
Being Patient: Studies show that hospital visits can worsen people’s dementia symptoms. What should people do to ease the transition for their loved ones after they enter or leave a hospital?
Dr. Liz Sampson: One of the things that we use in the U.K. is a document called “Ten Things About Me” so that when a person with dementia goes into an acute hospital, there’s a simple document with things like their name, what they like to eat and the music they listen to. Those facts could improve the person-centered care the person in the hospital has. It can alert the hospital staff to all the extra comfort care that can be given and helps them see the person as a person, rather than just someone with dementia. Carers can be really active during this experience. When their loved one goes into a hospital, they can put up pictures of relatives and bring photographs from home—anything that highlights who the person is, what they were before and makes that connection to personhood. It can be very useful to clinical staff. There are other things that can help, like taking someone’s clothes or familiar objects into the hospital so that when they come out of the hospital again, they’re in the same clothes or they have the same familiar objects with them.
Being Patient: Jasja, did you talk to your mom about what she wanted for end-of-life care in an earlier stage of the disease, and if so, what was that like?
Jasja De Smedt Kotterman: Luckily, my mother had always been specific throughout her life about how she wanted to die. It was actually very easy because she told us how she wanted to be buried, and we knew this way before she was sick. It was something that was always discussed with her in reference to how her parents had died and how she wanted us to treat her when she died. So for us, that really, really helped, because we knew what she wanted. Specifically, when my mother first got sick, my father decided not to share her disease with her. For a large part of the time, my mother was oblivious to the fact that she was sick. Even when she was being tested by the doctors, my father would come out and say, “You did really well in the test and the doctors said you’re fine.” When we put her into a home, he even said, “You’re just going in for testing. The doctors just want you to stay for a couple of weeks. They want to monitor you, but then you’re coming home.”
My sister and I had issues with that approach. We thought we should be more honest with her so that she knew what was going on. In retrospect, I think my father’s approach was the better one. It was the more compassionate one because she then forgot why she was in the care home and got comfortable. That fear of going into the home was lessened. We never really had the conversation with her while she was sick because we also had enough of a discussion with her before that. But I think you need to have that discussion earlier rather than later.
Being Patient: Dr. Sampson, do you agree?
Dr. Liz Sampson: Absolutely. We should all be talking with our parents about what they might want, whether they’ve got dementia or not. We should all say what we would want. There’s a big taboo in society about talking about death, but any one of us could be knocked over by a bus and end up in intensive care; our friends and family might not know what our wishes are. There are some really good public health campaigns about having a simple discussion on what a person wants when they die. I think people get very worried that they have to write it down on a piece of paper, have a clear legal documentation or an advance care plan, and that can help, but all of the studies and clinical experience show that it’s just having that discussion. It might be taking the opportunity when a family friend dies or there’s something on the telly to say, “Actually, what would you want? What do you think? I would want this.” That discussion is so valuable when you’ve reached the more advanced stages.
Being Patient: Dr. Sampson, should you have that discussion right after a diagnosis?
Dr. Liz Sampson: Yes, if you can do it in a sensitive way. The problem is that lots of people who have dementia—and perhaps it’s a blessing—don’t have insight into that because the part of the brain that gives us insight and self-awareness is affected quite early on in dementia. Sometimes, you can try and introduce the topic, but it can be very difficult for people who are in the early stages of dementia to visualize a future self and what they might want. You can keep it very general and say, “Was that a good idea? What happened to that person? What would you like?” Discussing the subject with your siblings or other family members could be helpful, but don’t put too much pressure on the person with dementia because it’s conceptually difficult to think, “What would my future self want?” But a very gentle discussion at an opportune moment could be helpful.
This interview has been edited for length and clarity.
[Read Jasja’s Story What I Wish I Knew Before My Mother’s Alzheimer’s Death]