Despite significant breakthroughs in medical knowledge, Alzheimer's disease is still shrouded in stigma and misconception. In this episode, we hear personal stories of what living with Alzheimer's is like. We hear from people who are in the early stages and managing well, as well as carers and medical professionals working with advanced Alzheimer’s patients. If you love someone with advanced Alzheimer’s disease, stay tuned for an upcoming episode on how to manage your new normal– especially when the going gets tough.
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Patient Support and Advocacy Groups
- Alzheimer’s Speaks
- Alz Authors
- Alzheimer’s Association Local Chapters (US)
- Alzheimer’s Society support groups (UK)
- Dementia Friendly America
- Dr Jason Karlawish - The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About it
- Dr Jennifer Bute - Dementia from the Inside: A Doctor's Personal Journey of Hope
- Anthony Copeland Parker - Running All Over The World: Our Race Against Early-Onset Alzheimer's
- Paul Hornback - God Still Remembers Me: Devotions for Facing Alzheimer's Disease with Faith
- Paul Hornback - My Purple Brick Road: A Faithful Battle with Early-onset Alzheimer's Disease
- Dr Daniel Gibbs - A Tattoo on my Brain: A Neurologist's Personal Battle against Alzheimer's Disease
[00:00:00] Lori La Bey: When my mom, you know, got diagnosed originally, that was a long time ago. It was like a war zone in terms of trying to get people to have a conversation about this and be open about this.
[00:00:11] Micaela Arneson: Lori La Bey and a lot of the people we interviewed for this series said that for a long time Alzheimer’s disease wasn’t discussed much outside of the doctor’s office for a number of reasons.
[00:00:23] Dr Jason Karlawish: Stigma haunts Alzheimer’s disease like ghosts haunt Halloween. Oftentimes it will lead them to not tell other people the diagnosis, because they don’t want to be treated differently.
[00:00:32] Micaela Arneson: Part of what drives stigma is a lack of understanding of Alzheimer’s disease. As we’ve said before in this series, there are still a lot of misconceptions about it.
[00:00:43] Paul Hornback: Some people have this set idea of what an Alzheimer’s patient is like, and not everybody fits that mold, in fact, very few do.
[00:00:52] Micaela Arneson: But over the last few years, conversations have opened up.
[00:00:56] Lori La Bey: In talking more with people, one of the things I found fascinating was how much they could express what it was like to live with this disease so that we can understand it better.
[00:01:08] Dr. Jennifer Bute: Feelings remain when everything else has gone.
[00:01:12] Micaela Arneson: In this episode, we’re gonna focus on personal stories of what living with Alzheimer’s is like. We’ll hear from people whose disease is progressing slowly and who are finding ways to live well. And we’ll hear from experts and carers about what we know so far about the later stages of disease. So if you love someone with advanced Alzheimer’s, we’ll share advice on how to better understand and stay connected to them. This is the Alzheimer’s disease podcast. I’m your host 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.
In the previous episodes, we met two people with Alzheimer’s disease, Paul Hornback and Dr. Daniel Gibbs. Both have stayed very active. Here’s Paul.
[00:02:08] Paul Hornback: We live on a farm and I really enjoy farm work. I enjoy mowing. I enjoy gardening. I’m still able to drive the tractor and do some of the farm tasks. I enjoy traveling with Sarah as well and spending time with Sarah.
[00:02:23] Micaela Arneson: Sarah is Paul’s wife.
[00:02:26] Paul Hornback: I’m still very active in the church. Some of our friends have been very good at coming and picking me up to go do things. I still work on mission projects and they kind of all know my limitations.
[00:02:38] Dr. Dan Gibbs: I religiously tried to get my 10,000 steps a day with Jack.
[00:02:43] Micaela Arneson: That’s Dr. Gibb’s very cute dog.
[00:02:47] Dr. Dan Gibbs: We live in the Hills. And most of our walks have about a 300 foot elevation gain. I write a blog. I still read a lot. I have a target of a hundred books a year.
[00:02:58] Micaela Arneson: Alzheimer’s disease hasn’t stopped either Paul or Dr. Gibbs from doing the things they enjoy with the people they love. It’s just changed the way they do them.
[00:03:08] Dr. Dan Gibbs: It’s progressing very slowly and I’m finding ways to cope along the way. I’m really, can no longer recall names in the book. So that’s okay depending on what type of book it is. I had to give up on a book that I had really been looking forward to reading called Putin’s People because I couldn’t keep all the Russian names straight. I told my wife that I can’t read this. So I went back to a murder mystery.
[00:03:32] Micaela Arneson: Dr. Gibb still writes a lot too, and he’s working on a paperback version of his book, A Tattoo on My Brain. He’s found that a few adjustments to his process help him concentrate better.
[00:03:42] Dr. Dan Gibbs: Before I work on it, I go out and exercise because that’ll get me sharper. I don’t listen to music as background anymore because I can’t multitask. I have to concentrate on what I’m doing, finish that thing and then go on to a next.
[00:03:56] Micaela Arneson: Notes help too.
[00:03:58] Dr. Dan Gibbs: I am a great believer in post-it notes to remind me to do things, for example, I’m terrible at forgetting to turn off lights. And it drives my wife crazy. So on particular light switches that I am particularly likely to forget, I have a post-it note to remind me to turn it out. We have a side-by-side refrigerator. And so we’ve got a post-it note, I’ve got a post-it note, close this store first, that sort of thing. For a while, I was really having trouble remembering to take my pills, so now I have this big banner that I lay over my pill minder that says ‘Stop, pay attention.’ Because if I’m thinking of something else and do it automatically, it’s a set up for failure.
[00:04:42] Micaela Arneson: And when he and Jack are on a walk, Dr. Gibbs relies on certain cues to recognize his neighbors.
[00:04:49] Dr. Dan Gibbs: Face blindness is common. I still have trouble recognizing neighbors at a distance because I can’t make out the particular facial features. I can identify them by their hair, by their dog, or by their voice.
[00:05:01] Micaela Arneson: Both Dr. Gibbs and Paul have also found that structuring their day is really helpful.
[00:05:08] Dr. Dan Gibbs: I make a list of things and I used to do that on my phone, but I gave that up because I would forget to look at the notes in my phone. So I actually use a paper note that I list the things I need to do that day and check them off as I go.
[00:05:23] Paul Hornback: I have like a daily schedule that I try to adhere to. Routine is important. I have a daily list of things that I need to do and I check them off.
[00:05:33] Micaela Arneson: Paul also uses notes and pictures to help him with engineering projects. Before he was diagnosed with early onset Alzheimer’s, Paul was an engineer for the defense department and engaging that part of his brain is still really important and joyful for him.
[00:05:50] Paul Hornback: If I’m working on a project, for instance, if I’m working on a mower and I have to disassemble something to fix it, I’ll either take pictures or I’ll write down the steps that I’m taking so that when I have to reassemble it, all I have to do is follow that list. And it’s silly because I may have done that task a hundred times before, but I have to compensate because my memory just isn’t as good as it was before.
[00:06:17] Sarah Hornback: And I will say I am more involved in his projects now than previously.
[00:06:23] Micaela Arneson: That’s Sarah. A lot of families living with Alzheimer’s disease find that adjusting roles helps them continue to do the things they love.
[00:06:32] Sarah Hornback: I would say there’s more shared responsibility for task and decision-making chores than maybe there was previously. We make it work and that’s the important thing. I don’t like planning trips. I liked it a whole lot better when he did all the planning and I got to just enjoy it. But, again, we want to do it and so we’ve made adjustments.
[00:06:51] Micaela Arneson: Of course, living with Alzheimer’s can also be emotionally challenging.
[00:06:57] Dr. Dan Gibbs: Depression is almost universal in Alzheimer’s disease and they’re really two parts to it, at least. One is that you’ve got a really bad disease and, you know, this is going to be unpleasant. But on the other hand, it also changes your brain.
[00:07:11] Micaela Arneson: Depression is also closely tied to apathy, which is a loss of motivation. It’s also very common in people with Alzheimer’s disease.
[00:07:20] Dr. Dan Gibbs: And it probably has to do with damage to the prefrontal cortex where amyloid shows up very early.
[00:07:27] Micaela Arneson: The prefrontal cortex is at the front of your brain and it’s involved in things like planning and decision making.
[00:07:33] Dr. Dan Gibbs: And when that’s damaged, you just really can’t multitask and you start losing interest in doing things and I certainly have that and had it very early on. So that’s part of the depression as well.
[00:07:47] Micaela Arneson: Alzheimer’s disease can also make socializing difficult, which can exacerbate feelings of disengagement and apathy.
[00:07:55] Dr. Dan Gibbs: I have, and most people with Alzheimer’s have, a lot of trouble understanding conversation if I don’t hear every word of the sentence. When my wife says something to me, almost always, I have to ask her to say it again because I didn’t catch that first bit and I can’t make sense of the whole thing. If I’m at a party or even dinner with several family members, I can’t parse multiple conversations. So I tend to withdraw into a shell.
[00:08:26] Micaela Arneson: Dr. Gibbs now tends to avoid big parties because it’s just too difficult to connect, but that doesn’t stop him from being social.
[00:08:34] Dr. Dan Gibbs: We have to exercise the parts of our brain that are involved with interpersonal relationships. And if that’s just one-on-one, that’s fine, but go out and do it and talk to your neighbor. And you know a dog is perfect for this, because I don’t know how many people I know by their dogs and it’s helpful for the people you’re interacting with in broadening their understanding of Alzheimer’s disease.
[00:08:56] Micaela Arneson: Many people also go to therapy or take medication to fight depression.
[00:09:01] Dr. Dan Gibbs: One thing I found to be extraordinarily helpful is you know recognizing that I have the depression and dealing with it as best I can. And part of that is I do take an antidepressant and have from the early, it’s just a low dose. And most people with Alzheimer’s do and that’s fine.
[00:09:18] Paul Hornback: I call them my foggy days and it’s, and I guess the best description is it’s like running through mud because everything is slowed down. It’s like your brain is not fully engaged. I don’t know any other way to explain it, and it’s frustrating.
[00:09:36] Micaela Arneson: One strategy that helped Paul fight depression after his diagnosis was redirecting his focus to the things he could do.
[00:09:47] Paul Hornback: I don’t want to just be a victim. I’m going to start to do something to kind of help the cause. And so I did my first clinical trial. And while I was participating in the first clinical trial, I got involved with the Alzheimer’s association. And I think those two things, for me, helped my attitude. I became much more positive. It was at that time I started writing a little bit, mainly just for my benefit, but I turned, eventually turned it into a book of devotions. But I just started to do things that were more positive and I told Sarah, you know, we can still make trips, we can still make plans. I just decided I was going to stay positive about it, and I was going to go ahead and live my life.
[00:10:35] Micaela Arneson: If you love someone who has advanced Alzheimer’s disease, who has trouble communicating, it can be harder to understand what they’re experiencing. But one thing nearly everyone we spoke to agreed on was that even as cognitive function declines, emotion remains.
[00:10:58] Dr. Jane Mullins: A person who has Alzheimer’s disease may not be able to express themselves very well anymore because it affects their communication skills. And so actually they will express themselves more emotionally.
[00:11:10] Micaela Arneson: This is Dr. Jane Mullins, a nurse and a researcher at an Institute for Aging in the UK. Some people with advanced stage disease may have outbursts and that can be hard for family and loved ones to cope with. Dr. Mullins said it can help to try to understand the emotion that’s driving that reaction.
[00:11:31] Dr. Jane Mullins: People that have displayed those sort of feelings and that sort of behavior, it’s because they’re in fear, they’re frightened. They may not be able to understand what’s being said to them.
[00:11:42] Micaela Arneson: It’s also important to remember that often people are confused by their surroundings. So caregivers need to be careful with their interactions.
[00:11:52] 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 then. And one of the most common things was the caregiver started to do something without telling them what they were going to do.
[00:12:09] Micaela Arneson: Much of Dr. Phillip Sloane’s work is focused on translating Alzheimer’s research into practice.
[00:12:15] Dr. Philip Sloane: So certainly preparing people for whatever’s going to happen is a big way to help reduce outbursts.
[00:12:23] Micaela Arneson: Caregivers may also find more success in changing their communication style.
[00:12:30] Dr. Jane Mullins: Instead of stressing out the person in terms of their memory, in terms of their language and those thinking skills, go more with sensory because that goes with our emotions as well. So using our senses can actually help a person feel better.
[00:12:45] Micaela Arneson: Lori La Bey found this to be true with her mother who had Alzheimer’s disease for 30 years.
[00:12:49] Lori La Bey: What I realized was words aren’t enough. We have to use our multi-sensory engagement. It can be all kinds of stuff. That gives them more things to grab a hold of, to recognize that we’re a safe person for them to be with. They might forget our name, but they will always remember how they feel.
[00:13:12] Micaela Arneson: For Lori and her mom, physical touch and doing things they could enjoy together helped their whole family stay close and connected.
[00:13:21] Lori La Bey: My mom, as she progressed, became younger, freer. She was not inhibited. She gave me that gift of seeing her playful, which was amazing. I would always go with a bottle of lotion and I would massage my mom’s hands or feet. It just gave us a closeness. My daughter would always come with fingernail polish. My daughter who is in her thirties only knew her grandma with dementia. My mom really wanted to be a grandma. I would bring over dinner, and I’d set up things for them to do, and I will never forget the impact and the joy that brought my mom. So my daughter’s always had a really close relationship with her grandma throughout her life.
[00:14:03] Anthony Copeland Parker: At some point in time, the intimacy is going to go away because they’re not going to be able to understand what that is. But they will never ever forget your touch.
[00:14:16] Micaela Arneson: We met Anthony Copeland Parker in the last episode. His partner, Katherine, has Alzheimer’s disease.
[00:14:24] Anthony Copeland Parker: I’ve always referred to her disease progress as a sign wave in decline. She is in decline. She needs assistance with just about everything.
[00:14:38] Micaela Arneson: Like many people with more advanced Alzheimer’s disease, Katherine sometimes experiences distress or anxiety, in new environments maybe, or in one of her more difficult days. Anthony has also found that touch and matching his emotion to his words helps her feel safe and calm, and it helps him too.
[00:15:00] Anthony Copeland Parker: I can give you a number of examples. It is we’re on an airplane, she’s getting a little bit agitated, and for me to just stroke her hand, or to look at her and say something about a memory that we had. And to see that connection or light go off in her head that she’s got some connection there to it, to reassure her how much I love her, to reassure her that I’m not going anywhere. That is one of her real strong, deep down fears. And just to hold her in the bed, just to stroke her brow, and to have her go back to sleep. And to hear the deep breathing that she’ll do when she goes back to sleep is something that is just so special to me and I just hold on to those moments. And that’s how I keep going.
[00:15:58] Micaela Arneson: It can be heartbreaking and frustrating to see a loved one progress through the stages of Alzheimer’s disease. In an upcoming episode, we’ll share more tips about caring for and communicating with those with advanced disease, especially when the going gets tough.
Most of the people we spoke to for this episode have written books about their experiences, including advice for loved ones and carers. Like Alz Authors, which has even more books and blogs by people living with a disease. And Alzheimer Speaks, which is Lori La Bey’s awareness organization. And as our understanding of Alzheimer’s disease improves, we’ll update those resources and this series.
In the next episode, we’ll talk about ways to manage Alzheimer’s disease, such as steps that can slow the progression in the early stages.
[00:16:50] Dr. Andrew Budson: Engage in regular aerobic exercise, make sure you get adequate sleep.
[00:16:58] Micaela Arneson: We’ll also talk about physical, speech, and language therapy.
[00:17:02] Sandra Robinson: We are expert in both communication and swallow disorders. And sometimes we might be one of the first clinicians to spot the kind of symptoms that would make us think, oh, I wonder if this person has started with Alzheimer’s.
[00:17:17] Micaela Arneson: And we will cover medications, some of which have mixed results.
[00:17:22] Dr Jason Karlawish: I think the consensus is that they have a role in care treatment, but they don’t have that kind of disease slowing effect that we would desire.
[00:17:30] Micaela Arneson: This is the Alzheimer’s disease podcast. This show is part of the Health Unmuted audio library by Mission Based Media. To listen and learn more, visit hupstaging.wpengine.com and follow our show on your favorite podcast player. The Alzheimer’s disease podcast is written, hosted and produced by me, Micaela Arneson. Sound design is by Ivan Jurich. Our executive producer is Dan Kendall and Chris Hemmings is our associate editor. A huge thank you to everyone we spoke to for sharing so much of themselves for the series. Thanks to Dr. Daniel Gibbs, Paul and Sarah Hornback, Lori La Bey, and Anthony Copeland Parker for sharing their personal experiences. And to Dr. Gibbs, Dr. Jane Mullins, Dr. Phillip Sloane and Dr. Jason Karlawish for sharing their medical expertise.