[00:00:00] Lori La Bey: It’s been sold to us that it is something that we can’t control. That it’s a very complicated disease, which it is.
[00:00:11] Micaela Arneson: Throughout this series, we’ve talked about ways to treat symptoms of Alzheimer’s and slow progression. But in this episode, we’re going to focus on carers and loved ones and how they can help manage the disease, particularly in later stages.
[00:00:25] Dr. Philip Sloane: I can only acknowledge that it’s a difficult situation as the disease gets particularly advanced, or if the person has behavioral symptoms that are difficult.
[00:00:33] Micaela Arneson: We’ve organized the advice into five parts: making Alzheimer’s-friendly changes to your home, helping someone with personal care, things not to say or do, getting support and advanced planning.
[00:00:47] Lori La Bey: Every person is different. Every care partner is different. Every environment is different. Our moods change, and what works today might not work tomorrow.
[00:00:59] Micaela Arneson: And at the end of the episode, we’ll share additional resources where you can learn more.
[00:01:03] Lori La Bey: Remember and celebrate what works, and then don’t forget to share it with others because that makes their journey easier.
[00:01:14] Micaela Arneson: This is the Alzheimer’s disease podcast. I’m your host Micaela Arneson.
[00:01:21] Micaela Arneson: This show was created for educational purposes only. It is not a substitute for formal medical advice, diagnosis, or treatment. So if you have questions about a medical condition, talk to your qualified healthcare provider.
[00:01:36] Micaela Arneson: Part one: making changes to a person’s environment. In episode three, we heard from Dr. Jane Mullins, a researcher and consultant about how Alzheimer’s disease can alter a person’s perception of the world around them.
[00:01:50] Dr. Jane Mullins: Things may look different in space and time. So their hands may look bigger. The distance between a cup of tea on a table might be different from what we’re seeing.
[00:02:01] Micaela Arneson: So to keep a person with Alzheimer’s disease safe and comfortable, in their own home or in a care facility, Dr. Mullins advises making a few key changes to their environment. For example,
[00:02:12] Dr. Jane Mullins: Try and make the place as light and clutter free as possible. The person needs to see more contrast because they may not be able to distinguish things so easily. Light is very important. Some people think that their loved one’s having a hallucination. It may not be a hallucination. It may be what’s called a misperception.
[00:02:31] Micaela Arneson: A misperception is when someone mistakes an object for something else, like a black rug for a hole. But it’s not just physical clutter that can be dangerous or disorienting.
[00:02:42] Dr. Jane Mullins: If the environment’s very busy and full of noise, the person may struggle and get a little bit confused. So try not to over stimulate.
[00:02:51] Micaela Arneson: It may be distressing for a person to have the radio or TV on all day. Getting out into nature, on the other hand, can be very calming.
[00:03:00] Dr. Jane Mullins: If you have an outdoor space, like a garden, you can help try and get them to sit out in the garden. They’ll feel the breeze on their face. They might hear the birds singing, get somebody grounded in nature.
[00:03:12] Micaela Arneson: Dr. Mullins also recommends using environmental cues around bedtime to help a person distinguish day and night and sleep more easily.
[00:03:20] Dr. Jane Mullins: Making the house a bit dark. Avoid the use of screens like TV or iPads or phones for at least two hours before bed. I do recommend like a bedtime ritual. A nice warm bath, if that’s possible or even help the person put their hands in some warm water with a little bit of lavender oil, that can be quite nice.
[00:03:45] Micaela Arneson: This brings us to part two: helping a loved one with personal care, which can be really difficult. Here’s physician Dr. Phillip Sloane.
[00:03:53] Dr. Philip Sloane: Things like helping somebody get out of a chair, helping somebody walk, making sure they’re stable and safe when they walk, dealing with incontinence loss of ability to control the bladder, or even the bowels later on. All these things become major issues.
[00:04:09] Micaela Arneson: Anthony Copeland-Parker is facing some of these challenges with his partner, Catherine,
[00:04:15] Anthony Copeland-Parker: She doesn’t dress herself. She doesn’t shower by herself. And so all those things I have to do for her, I have to guide her to the bathroom, things like that. She is incontinent overnight. She does a pretty good job during the day, but I have a reminder every two hours to get her to the bathroom, just to make sure that she is able to stay continent during the day.
[00:04:37] Micaela Arneson: For the moment, Anthony is managing largely on his own, but each person and carer is different and their needs will change as the disease progresses.
[00:04:47] Dr. Philip Sloane: Some family are able to manage them by themselves. Some will bring in some help at certain times of day to help with these things. As the disease progresses, it takes more than one person, and management should always be oriented toward the best function they have.
[00:05:08] Micaela Arneson: If you’re caring for someone with Alzheimer’s the experts we talked to offered a few pieces of advice. Perhaps most importantly, Dr. Mullins said, caregivers should help someone stay independent for as long as possible.
[00:05:21] Dr. Jane Mullins: One of the reasons often people tend to lose abilities earlier on is because we do tend to take over. One of the last parts of our memory that really does deteriorate is called procedural memory.
[00:05:35] Micaela Arneson: Procedural memory is a type of long term memory involved in actions or skills. So instead of cleaning someone’s teeth for them, Dr. Mullins recommends helping the person do it for themselves.
[00:05:46] Dr. Jane Mullins: Say for instance, they need to clean their teeth. You’ve done a bit of miming. You’re showing them what you want them to do. If you hold their toothbrush, and then get their hand to go over yours, you’re still helping them, but they are actually still using that movement.
[00:06:03] Micaela Arneson: Some people with Alzheimer’s disease may also struggle to understand what you’re saying, and this is where using sensory cues instead can help.
[00:06:11] Dr. Jane Mullins: Instead of just saying, “Come on, we are gonna go and have a shower now,” or “I’m gonna give you a wash,” they may not understand what that means. But if you’re helping dressing somebody, if you’re trying to help them get their shirt on, maybe sing a little tune and do it in a sort of rhythmic way. Do it yourself as well, show them what you are doing.
[00:06:31] Dr. Jane Mullins: One thing I would also say as well, familiar clothes is really important, but they may really struggle to put things on when there are patterns on them, so sometimes plain clothes might be easier.
[00:06:44] Micaela Arneson: Alzheimer’s can also affect someone’s sense of taste and smell, which can make it harder for them to eat.
[00:06:51] Sandra Robinson: And that can have a massive effect on the person’s sensory abilities to eat, drink, and swallow safely, and certainly to enjoy it.
[00:07:00] Micaela Arneson: That’s Sandra Robinson, a speech and language therapist.
[00:07:04] Sandra Robinson: Or, it might not be the type of food at all, but how it’s presented, or how it’s given. It could even be that the person has a preference as to who is around, or where they eat and drink.
[00:07:18] Micaela Arneson: All of this means that you may need to get a little creative with textures, flavors, and mealtime routines.
[00:07:24] Anthony Copeland-Parker: I make a breakfast that is a mixture of baby cereal, granola, and a smoothie mix. And I mix it all together so it’s a consistency that it’ll stay on the spoon real easy. I put it in a bowl. I put a slip pad down below so that it doesn’t easily move.
[00:07:46] Micaela Arneson: Anthony’s also found that making dinner a shared activity helps Catherine eat better.
[00:07:52] Anthony Copeland-Parker: I put all the, what we’re going to eat into one dish and we just eat out of the same dish. I’m sitting right next to her, got my arm around her. I’m communicating both verbally and by my mouth motions to get her to open her mouth. And she seems to be eating a lot better us doing that way.
[00:08:09] Micaela Arneson: Whatever you try, Sandra said, it’s most important that your loved one is eating safely and getting the nutrients they need.
[00:08:17] Sandra Robinson: Those with Alzheimer’s are also at significant risk of becoming malnourished. That may or may not be because of the swallow problem. It’s sometimes because of appetite, but again, that’s why it’s really important to try and keep a record or just monitor really closely on how much somebody is managing to eat.
[00:08:34] Micaela Arneson: Some families also find that their loved one with Alzheimer’s can get more agitated during personal care, especially bathing or showering. And Dr. Sloan wants to remind you that the person may be confused by their surroundings. So caregivers should be careful with their interactions.
[00:08:50] Dr. Philip Sloane: We looked at over a hundred different times when a caregiver was hit by somebody with dementia during bathing. And we looked at the 10 seconds before they got hit to see what was happening before that. And one of the most common things was, the caregiver started to do something without telling them what they were gonna do.
[00:09:07] Micaela Arneson: Preparing someone for what’s going to happen and keeping them comfortable, can help reduce outbursts and make things like bathing or dressing a little bit easier. Of course, if the person is really agitated, Dr. Mullins would advise you not to push it.
[00:09:21] Dr. Jane Mullins: If someone’s quite stressed and you are trying to help them with their personal care, you need to take time out. We’ve got to think about how we would feel ourselves. Realize that the end result, if they haven’t cleaned their teeth to the standard that you want them, maybe that’s not such a problem.
[00:09:39] Micaela Arneson: This is true not just for personal care.
[00:09:43] Micaela Arneson: Some people with Alzheimer’s disease experience changes in mood or personality. They may be more prone to verbal, even physical outbursts. And that can be really tough for family and carers to deal with. As we talked about in episode three, a lot of these behaviors are driven by emotion.
[00:10:00] Dr. Jane Mullins: The person might become very agitated, anxious, and in some cases aggressive, which I hate that word, because usually the people that have displayed those sort of feelings and that sort of behavior is because they’re in fear. They’re frightened. They may not be able to understand what’s being said to them.
[00:10:21] Micaela Arneson: So it may be more effective to engage them emotionally, rather than react to what they’re saying.
[00:10:26] Dr. Jane Mullins: So often it’s not necessarily trying to understand the words a person is saying. It’s more about understanding their emotions, making sure that we can mirror them emotionally and we can help them very often, in a nonverbal way showing love, maybe a smile.
[00:10:44] Micaela Arneson: Of course, this doesn’t work for everyone and it doesn’t work all the time.
[00:10:48] Dr. Philip Sloane: There’s some people who just get really difficult. Even in the best situations, families have a tough time. The next solution of course, is to just walk out and leave ’em alone. Let them get over it. Obviously you can’t walk away if they’re not safe, but if they’re having an outburst and you can get away, often just a minute or two, it’ll be better. It’ll calm down.
[00:11:11] Micaela Arneson: So far, we’ve talked about things you should do to help care for someone with Alzheimer’s. Now let’s shift to part three of the episode things you shouldn’t do.
[00:11:20] Micaela Arneson: Dr. Daniel Gibbs and Sarah Hornback said there are a few things that are not helpful to say to someone with Alzheimer’s or their loved ones.
[00:11:28] Dr. Dan Gibbs: When somebody tells them that they have Alzheimer’s disease, I would urge people not to push back and say, “Oh no, you don’t, your memory’s much better than mine.” That doesn’t help.
[00:11:38] Sarah Hornback: A lot of what I get now is “I don’t think anything’s wrong with Paul,” or “he seems fine to me,” which you know it’s like telling someone with cancer, “You don’t look like you have cancer.” How’s it supposed to look?
[00:11:51] Micaela Arneson: Instead, Dr. Gibbs and Sarah prefer it when people ask questions about their experiences.
[00:11:57] Dr. Dan Gibbs: It would be much better to say, “Really tell me about it. What’s going on?” It’s better to talk openly with friends and neighbors and family rather than avoiding the topic.
[00:12:08] Sarah Hornback: It’s not helpful to dwell on the negative. I try to think in terms of what would I say to a cancer patient? Would I say, “boy, man, that’s just awful,” and no, I would say, “what are your plans? Do you need help with transportation?” Those kinds of things are gonna be far more helpful than the feeding into my pity party.
[00:12:31] Micaela Arneson: It’s also not helpful to test someone’s memory or overload them with information.
[00:12:36] Sandra Robinson: Asking lots of interrogative questions and trying to get somebody to remember something, just places too much strain on them and is possibly unfair. And it could even be utterly impossible.
[00:12:51] Micaela Arneson: Sandra says it’s better to keep it simple, but still respectful.
[00:12:54] Sandra Robinson: Don’t talk at length. Don’t use too much complex language, but also don’t talk down to them. It’s about having some respect and some dignity for the individual.
[00:13:05] Micaela Arneson: Lori La Bey cared for her mom, and has worked with many people with Alzheimer’s disease. One, man, she worked with reminded her that it’s often enough for carers and family to just spend time together.
[00:13:17] Lori La Bey: And he said, “I liked to relax before I got dementia. I still do. Please, if I am sitting on my bench in the backyard, listening to the birds and absorbing the sun and feeling the breeze on my face, don’t tell me I have to go do something to make yourself feel better. Sit next to me and relax with me.”
[00:13:44] Micaela Arneson: Sit relax, stay in the moment. Those are good tips for caregivers too, because caring for someone with Alzheimer’s disease can be heartbreaking, exhausting and challenging on so many levels.
[00:13:57] Micaela Arneson: And this brings us to part four, getting outside support.
[00:14:01] Lori La Bey: I was more stressed out than what I thought I was, because you don’t slow down to look at yourself, but all of a sudden I had acid reflux. I had asthma, I had a little anxiety and I’m like, where did this come from? And after my caregiving roles were done with, all that stuff went away. I realized that I was feeling the loss, that kind of ambiguous loss that hits you constantly through this disease.
[00:14:28] Micaela Arneson: So, if you love someone with Alzheimer’s, Dr. Sloane advises, you get other people to help you out.
[00:14:34] Dr. Philip Sloane: Monitor your feelings, and if you’re reaching a point where you really are irritated or annoyed or angry about the job that you’re supposed to be doing, you’re overwhelmed, and you need help. Don’t be afraid to ask friends. Don’t be afraid to ask family members and some will pitch in and some won’t. And so find the ones who will.
[00:14:54] Micaela Arneson: The stigma around Alzheimer’s disease means that some people don’t have a big support network of friends and family. If this describes you, know that there are lots of other resources like memory, cafes, support groups, and local Alzheimer’s Association chapters.
[00:15:09] Lori La Bey: I had friends and family members that just like, “eh, we don’t need you anymore.” They didn’t have anything to do with me. And I felt really bad, but what I did find was other people came into my life that filled my soul.
[00:15:21] Micaela Arneson: Always try to remember, with a disease like Alzheimer’s, you’re not alone. Therapy or counseling can also be really helpful to work through the emotional impact of Alzheimer’s disease.
[00:15:33] Lori La Bey: We can’t truly give top-notch care when we have an emotional need. And so I had to figure out how to make that go away and not feel sorry for myself, really, that my life wasn’t turning out the way that I thought it was going to be for myself or for my mom.
[00:15:52] Micaela Arneson: And don’t forget to do things just for yourself.
[00:15:55] Sarah Hornback: I enjoy crafts. I enjoy cooking. I enjoy being physically active as well.
[00:16:02] Micaela Arneson: Take a break. Even if you can’t physically leave your loved one.
[00:16:06] Anthony Copeland-Parker: For me, I try to concentrate on what do I like to do on those tough days.
[00:16:15] Micaela Arneson: For Anthony it’s running. Catherine is his running partner, but she’s slowed down.
[00:16:21] Anthony Copeland-Parker: I was getting into a point where I wasn’t getting enough exercise myself.
[00:16:26] Micaela Arneson: So, Anthony got a pushchair.
[00:16:28] Anthony Copeland-Parker: She’ll sit back and relax, and then I’ll go another mile or two by pushing her along. And I get a lot more exercise. So it helps out a whole lot.
[00:16:38] Lori La Bey: The present is really the only moment that you can recognize joy or create joy. And that’s what I wanted for not only my mom, but for myself, life can still be really good. It doesn’t have to be perfect.
[00:16:54] Micaela Arneson: We’ve reached the fifth and final part of this episode: advanced care planning, which is a really important part of making life with Alzheimer’s really good and manageable, like Lori said. And everyone we talked to, including Dr. Sloane said the best time to think about the future is now.
[00:17:11] Dr. Philip Sloane: It’s very helpful to know what the person’s values are early in the disease. Now people are being diagnosed with very good cognitive function to the point that they can actually participate in decisions about what their values are.
[00:17:26] Micaela Arneson: Advanced planning includes things like wills, estate planning, creating power of attorney and advanced directives, which are a person’s instructions for what kind of care they want to receive in the later or end stages of disease.
[00:17:38] Dr. Philip Sloane: If they needed hospitalization, if they needed from a medical perspective to have a tube inserted, this kind of thing, and even what they would consider life, not worth living. And that differs very much from person to person.
[00:17:53] Micaela Arneson: This could also include what kind of long term care a person wants. And there are a lot of options.
[00:17:59] Dr. Philip Sloane: There are resources for long-term care in the home setting, long-term care in day centers, long-term care in assisted living, long-term care in nursing homes.
[00:18:08] Anthony Copeland-Parker: If we ended up in an assisted living, one of the things that I said was that we would always live together.
[00:18:15] Micaela Arneson: Anthony and Catherine made their decisions about long-term care shortly after she was diagnosed.
[00:18:21] Anthony Copeland-Parker: So I have that as a requirement when we go out and we look for different places. So you have step down programs, you’re in an apartment, don’t need any help at all. You now stay in the same place, but then you hire folks to come in to help you, or you use their services.
[00:18:43] Micaela Arneson: The sheer number of options can feel overwhelming, but there are services and resources available in every state to help families figure out what works best for them.
[00:18:52] Dr. Philip Sloane: There’s a group called “professional geriatric care managers” in pretty much every state and community who could help guide that process, in addition to geriatric care managers or social workers in the area. Another resource of course is the Alzheimer’s Association. The Alzheimer’s Association has chapters in every state and they’ve got a hotline. Some governmental agencies have hotlines for senior services.
[00:19:16] Micaela Arneson: There’s also nursing home Ombudsman in every state and their job is to identify which homes offer good care and which ones don’t. We’ll put links to these resources on our website, and if you’re listening from outside the US, there’s international information there too. Also Dr. Sloane acknowledges that nursing homes carry a negative connotation for some people, but he would urge everyone to do their research and stay flexible.
[00:19:40] Dr. Philip Sloane: I really have to mention this. There’s a saying, “Oh, I promised mother, I would never put her in the nursing home.” That promise puts families in a real bind sometimes, because if somebody reaches the point where they’re very difficult to live with and the family really can’t handle them- but they’ve got this promise. So I think families and people with dementia really need to keep open the possibility that anything could happen.
[00:20:06] Anthony Copeland-Parker: I, at one point being a pilot and always believed in getting the airplane down safely, that I was going to figure out a way for Catherine to not die from Alzheimer’s. But at the same time, now I understand that, in her time horizon, that’s probably not gonna happen. So for us, it’s just trying to have as much quality of life as possible for as long as possible.
[00:20:36] Micaela Arneson: On our website, you can find links to support groups and a memory cafe directory, as well as Lori La Bey’s education and awareness organization, Alzheimer’s Speaks. There’s also information about counseling and ideas for mentally stimulating, fun activities to do with your loved one. We also have links to the resources for navigating long-term care options that Dr. Sloane mentioned, as well as a few books written by the people in this episode that have even more advice for carers, friends, and family members. And if you’re listening from Canada, the UK, Australia, or another part of the world, we’ll continue to add more resources as we find them.
[00:21:12] Dr. Philip Sloane: Read up about the illness, recognize that your individual is going to be an individual and what you read may or may not apply directly. And then, try to read the person, listen to them, understand them, do what you can to understand where they’re at. And that’s all we can do.
[00:21:30] Micaela Arneson: This is the last episode of the Alzheimer’s disease podcast. For now
[00:21:34] Micaela Arneson: We know that caring for someone with Alzheimer’s is complex and difficult.
[00:21:39] Micaela Arneson: In this episode, we talked about helping someone feel safe in their environment and assisting them with personal care. But we know there’s more to cover on topics like advanced planning and getting outside support. So we’ll be back with more episodes covering these and other issues in greater detail.
[00:21:55] Micaela Arneson: “Like” and follow our show on your favorite podcast player and subscribe to our newsletter, so you’re updated when we release new content. And if you’ve got a question or a topic you want us to cover, get in touch at Alzheimers (@) health unmuted (dot) com or on social media.
[00:22:11] Micaela Arneson: This show is part of the Health Unmuted audio library by Mission Based Media, written, hosted and produced by me, Micaela Arneson, sound design is Ivan Jurich. Our executive producer is Dan Kendall and Chris Hemmings is our associate editor.
[00:22:26] Micaela Arneson: Many thanks to Anthony Copeland-Parker, Dr. Daniel Gibbs, Sarah Hornback, and Lori La Bey for sharing their personal experiences and to Dr. Phillip Sloane, Dr. Jane Mullins and Sandra Robinson for sharing their medical expertise.