Navigating the Difficult Challenges of Alzheimer’s, Part II


Peter Panageas (00:07):

If you’re looking for timely, relevant conversations about the most important topics in health coverage, you’ve come to the right pod. This is IBX: The Cover Story from Independence Blue Cross, hosted by me, Peter Panageas.

Peter Panageas (00:20):

So by day I oversee all of our national commercial business here at IBX. I’m also a caregiver and a patient. We always say that health care is personal, and it is. So my guests and I are exploring how the big picture and the big issues affect our everyday lives and the well-being of those we all care about. Together, we’ve got this covered, so let’s get started.

Peter Panageas (00:45):

Hi everyone. This is Peter Panageas. Welcome to part two of episode 13 of IBX: The Cover Story. As you’ll recall, this month recovering the topic of Alzheimer’s. Joining me today is Dr. Heidi Syropoulos, a medical director at Independence Blue Cross, who joined our team after practicing geriatrics for nearly 30 years. We also have Mike Burnham. Mike is a close colleague of [inaudible 00:01:13] husband and a caregiver to his dad who’s living with Alzheimer’s. Finally, my brother-in-law Jim Biggs. Jim is the CEO of West Bay Senior Living in Irvine, California. Dr. Syropoulos, Mike and Jim, thank you all so much for being with us today.

Mike Burnham (01:28):

Yeah. Thank you for having me.

Jim Biggs (01:31):

Nice to be here.

Dr. Heidi Syropoulou (01:32):

Thank you for having us.

Peter Panageas (01:32):

To our listeners, I wanted to share, since we recorded this original podcast about a week ago, there has been an update that we thought was very important to share with all of you in regards to Michael’s father. Mike, I’m going to call on you here in a minute, but I thought it was also important to honor the legacy of two incredible people that we’ve spoken about here as part of our podcast. For our listeners we’re sharing this because each of you are probably dealing with this in some fashion that Marilyn Biggs was an incredible woman. A woman who was God loving, who cooked every day of her life, who cleaned every day of her life, who loved and cared for her husband and her sons and daughters, grandchildren, son-in-laws and daughter-in-laws, had such a passion for life. This disease changed her. It took her away from us, but it also allowed the family to spend time with her in ways that they had never spent with her.

Peter Panageas (02:28):

My wife shared with me a story that there were times that she didn’t know what to do or what to say, but she would just hold her mom’s hand. That helped Mary and her mom get through this really unique and challenging time. It was something that I found pretty profound as a way to connect with her mom in ways that helped her navigate through this journey. Michael, if you could, share with our audience a little bit about your dad and what he was and what he did and kind of where you sit today.

Mike Burnham (02:59):

Sure. Yeah. Thanks Peter. It’s good to be able to provide some context into who my father was and what we’re dealing with today to show people that things can change dramatically in a very rapid amount of time.

Mike Burnham (03:13):

But let’s go back. My dad, who’s one of the smartest people I know, he wanted to go to the University of Delaware when he graduated high school. He enjoyed the party side of things more than the schoolwork. But then he decided to go into the Air Force and there he was a technician who worked on the electronics, both airplanes and sonar and radar. I think that’s where he sort of picked up the ability to fix damn near everything from cars to household appliances to plumbing, flooring. I mean, the man could do it all. But when he returned from the Air Force, he eventually took a job in our family business, which was they owned a meat distribution company that they also made their own sausage and scrapple.

Mike Burnham (04:07):

So I give a plug out to Milton Sausage and Scrapple because it is the best around. Very hard worker. When you own a family business, you’re not tied to 9:00-5:00. I would say most days, he’s there at 7:00 a.m, and sometimes wouldn’t get home until 6:00 or later. My mom was a nurse so their schedules sometimes didn’t jive. He’d have to do a lot of the things to take care of me and my siblings. He did all he could to provide for his family.

Mike Burnham (04:37):

He also supported my brother and my sister and I in all of our activities, so Boy Scouts, coaching baseball. He said, “I didn’t even know baseball,” but he loved to be with us to coach my brother and I in baseball, my sister in softball. Really supported us kids. He would come to all our games. Even if we weren’t playing, he was there. You’ve got to understand he as a small business owner working long hours and long days, he still made the time to try and make it to our games, and I loved him for that.

Mike Burnham (05:10):

I think the best thing about him was mom. He would often say that she was the best thing that ever happened to him, and I sincerely agree. They formed such a strong family unit, and it was such a loving, caring household that I think that is what helps define who I am is that I had such great role models to know you work your butt off, but you know when you come home you’ve got your partner there to always be your rock.

Mike Burnham (05:45):

Like I said, he’s one of the smartest people that I know. We could never beat them at any board game. We often on Friday nights would have board game nights, Monopoly and chess. He taught me how to play chess. But the man just, he was ruthless to us.

Peter Panageas (06:03):

Competitive guy, huh Mike?

Mike Burnham (06:04):

Oh yeah. Poker. He taught us how to play poker, things he picked up in the Air Force, and no one could beat him at that either. So crossword puzzles and word finds and thinking type activities. Trivial Pursuit. My gosh, this guy was just a walking encyclopedia about information. It’s good to have those experiences and memories to know who dad was because he is definitely a different person now.

Mike Burnham (06:37):

I mentioned the diagnosis for dad was back in, the official diagnosis, I think was 2016. But again, we had started to see a lot of slippages in memory. I think one of the first things we noticed is he wasn’t doing the crossword puzzle anymore. He was an avid reader of books and newspapers, and he would often get two or three newspapers a day. He slowly started to not be interested in reading, not be interested in watching TVs because he couldn’t follow along with the plot. So as the things have progressed, we hold onto who he was because I think that’s the important thing to remember is this man was a very strong, smart, caring, loving, stoic individual, and this disease has just destroyed all of that. I know he still loves us.

Mike Burnham (07:32):

But to provide you an update. After we recorded the first part of this podcast, he had started into a daycare program, and we had seen him that weekend. It was my parents’ and my in-law’s anniversary. So we had them over to the house, and it was absolutely the best that I’ve seen dad in weeks. He was with it, he was enjoying himself, he was communicating. We were like, “Oh man, maybe this daycare thing was great for him. It was stimulatory. Maybe it’s what he needed.” Then the next day he wouldn’t get out of bed. The next day after that, he wouldn’t get out of bed. He started to say things like, “I can’t do this anymore.” We all know what he meant by that, but it is hard for me to hear it and let alone my mom. For him to say those things to her, it’s quite saddening.

Mike Burnham (08:34):

So in the past three weeks, we’ve gone from dad up and about to getting started on hospice. We had the hospice folks come out to the house a couple times, and we made the decision to have them start to become more present in his daily care and help us manage it. We’re still hopeful that the hospice can help provide comfort and care to both my mom and my dad because it’s just gotten to the point where we can’t manage it all. I’m very grateful to the Delaware Hospice Program that they have been so responsive and so supportive. We only started this couple days ago. We recognize where we’re at in this journey. It doesn’t mean we don’t still have hope that he can be comfortable and give us some moments of clarity. I think that’s what I’m looking forward to is just to have times when I come to visit him that he’ll still recognize me, and we might find something we can talk about where he’s going to remember that.

Mike Burnham (09:45):

Last time I saw him was right before Father’s Day, and I just sat next to him. He was laying in bed, and we were talking. We weren’t talking about anything important, but he reached out and grabbed my hand. I knew that that was his way of telling you that he knew who I was and that he loved me. What more could you ask for in that moment? Just to know that your dad still cares so much for you and if he could, he would do anything for us. I still think we have a ways to go, and I’m very hopeful again, that I will be able to have those small moments to hold onto and cherish.

Peter Panageas (10:37):

Mike, knowing you and Karen and your kids, the legacy that you’ll continue in honoring your dad in this next phase that you’re all going through, I know will be something that he’ll be so proud of you. Knowing you and not knowing your father, but knowing who you are and your character and what you’re about and your children is a testament to your dad and to your mom. Thank you so much for sharing that with us. Our thoughts and prayers and collective hugs are being sent your way and your family’s way as you go through this next phase.

Mike Burnham (11:09):

Thank you, Peter. I appreciate that.

Peter Panageas (11:13):

I’ll just echo what I said earlier when I talked about what was special to Mary as she was going through this journey with her mom. She held her hand when there was times that she just didn’t know what to say or what to do. Just by holding her hand, she felt a level of comfort not only for herself as her daughter, but she knows it meant a lot to her mom. You doing that with your dad, if there’s anything there for you to take away from that, it really helped Mary and her mom through their respective journey together. God bless you, man. God bless you and your family.

Mike Burnham (11:43):

Thank you, Peter. I appreciate that.

Peter Panageas (11:46):

We touched on a number of things here. I’d be remiss if I didn’t at least share with you three, and Jimmy knows this because it was his mom and dad … I happened to be married to Jim’s youngest sister Mary. When we talk about taking those steps from home to assisted living and you talk about the paperwork and the legalities and the organization associated with that and trying to make all the right moves. I look at what Mr. Biggs did for Mrs. Biggs and all the moves that he made and all the organization that he did and as proactive as he was … As Jimmy said, there were some things he did spot on and there were things that he thought he might have been doing right … Right, Jim? That he thought he might [inaudible 00:12:30]-

Jim Biggs (12:29):

Yeah.

Peter Panageas (12:29):

But it may not have been the right move. But it was all done in love and organization and structure and trying to do all that. He had these three daughters and you talked about it, a team. Team Burnham floating around your dad right now, Mike, and your mom. Team Burnham is and cousins Burnhams whoever they might be, they’re all there helping out. You have Sue and Nancy and Maryann helping mom every day and helping dad and trying to navigate, and Jimmy from China providing that. There’s this global team, if you will, helping. Even that, with all that, with all that you’re doing as team Burnham and all as team Biggs did and amazing work and caregiving, it was overwhelming. I watched it firsthand. I saw what it did. The around-the-clock care and just little things like you were just talking about. Your mom going out and getting shoes, Mr. Biggs just going out to get a haircut. Little things like that were overwhelming.

Peter Panageas (13:27):

I think the things that you’re doing, Mike, with your family and Jim, what you and your brother and sisters did to help mom and dad were a reality of probably what many of our listeners are having to kind of navigate through every day. I couldn’t agree more, Heidi, with your counsel and recommendations on all the appropriate paperwork and legal paperwork. It’s critical. Jim, I’m going to ask you, when you have new patients coming in, do you see that as a common thread, that a lot of the paperwork may not be filed appropriately or just all structured? Is that something that you see often?

Jim Biggs (14:00):

Usually, Pete, it’s done, but it needs to be reviewed and updated because in many cases, particularly if a definition that resident coming into memory care probably doesn’t have the capacity to make those decisions. So it’s just validating, making sure the primary, whoever is that power of attorney, who it’s been transferred to and it’s the medical power of attorney, not necessarily the financial power of attorney … They’re not always the same person, but we really want to make sure that power of attorney understands, fills in any of the blanks on the paperwork that has not been completed. You definitely want to make sure the i’s are dotted and t’s are crossed because it definitely comes down to … You heard Michael talk about it earlier … You’ve got to have a plan. As we found out, everybody knows that quote from Mike Tyson, “You have a great plan until I punch them in the nose,” and Alzheimer’s is Mike Tyson. It will hit you in the nose. It’s just like, “Wow, what just happened there?”

Jim Biggs (15:03):

The family needs to communicate, needs to adapt. From a provider point of view, we recognize that I think, Pete, what you saw with the three sisters is a little bit unusual. That it’s not uncommon sometimes to have family members that there’s sometimes unresolved childhood issues. There’s sometimes it doesn’t really matter why, but there’s just people that are coming in. I did not want to be that guy coming in from China suddenly just saying, “No, no, no. Do this. No stop doing this.” Again, you’ve got to have above all that, to me, what’s most important is the family consensus and that we’re all in this together to navigate what’s best for the resident.

Jim Biggs (15:48):

I think nobody gets their way all the time, but it’s just important that those voices, people, they’ve got to feel like they’re in some cases and again, it’s been briefly touched on, it’s frustrating that the family member doesn’t know, “Hey, all these things we’re trying to do for our mom,” or what you’re trying to do for your dad, it brings out a feeling of helplessness and that can sometimes, and it’s just having those discussions with the family just to make sure that again, good, clearcut consensus. Those things need to be done as a family not in the presence of the resident. Then ideally you try to speak as one voice to make some of those major decisions.

Peter Panageas (16:24):

Well said, Jim, and I’ll just say it again, Mike, to team Burnham and the work that you all are doing and certainly to team Biggs and the work that they did, these are two examples of a family rallying around and trying to manage a very, very challenging situation. I think our listeners can all learn from the incredible work that Michael you and your family are doing and pouring into your dad and mom right now and certainly the incredible work that Jim you and your family did and taking care of mom and dad. Go ahead, Jim.

Jim Biggs (16:54):

Yeah. Pete, again, the thing I emphasized and Pete I’ll share this quick story. I came back from China day before Christmas, somewhat serendipitous. A project I was working on over there was delayed. Complete sidebar, but it’s just to make my sisters laugh. My mom always swore she was psychic. She just, “I have this magical ability,” and every so often she would pick up the phone. She’d hear the phone ring and then, “Oh, that’s Janice calling.” Sometimes it was, sometimes it wasn’t, but in her mind she was psychic.

Jim Biggs (17:27):

I always used to make fun of it until again, the project got canceled in China. I made a spot decision just, “Hey, I’m going to grab a quick bag. I’m not going to pack. I’m not going to get gifts.” I got literally the fight that got me into Newark Christmas morning. Just wasn’t planned for, it was just like, “Hey,” and I was actually going to see my daughter and my grandkids when Susan called and she said, “We got some horrible news. Mom was diagnosed with the liver cancer, pancreatic cancer.” She goes, “You’re not going to be able to make home.” I’m like, “Oh, I’ll be home in two hours. I’m up on the Turnpike.”

Jim Biggs (18:04):

So I go directly to the property, I’m there for maybe two hours and we’re all talking. My mom’s lying there in bed. It was obvious, she was starting to get the hospice care. For those listeners who may not know, hospice is generally end-of-life care. It’s important just as much for the memory care as it is for cancer, or especially for the two times like my mom, but she was laying there and we’re all talking. This is kind of what I mean about just you want to be there because you just never know when those moments happen. Suddenly I hear this, “Jimmy, Jimmy,” and this is from a woman who hadn’t really recognized her kids for a couple years. So I came over and she said, “I’m going to belt you.”

Jim Biggs (18:54):

These are words I hadn’t heard from my mom since I was a young child, but it was the one thing in the world that she could have said that she knew I was there. Somehow at that level, she fought through whatever the Alzheimer’s had done to her. Of course, later that night it was her final words were, “I did it, I did it.” As I kind of espoused at the eulogy, it’s like we’re not quite sure what she was thinking at that moment. She was under some hospice care, so there’s morphine, there’s the Alzheimer’s, but I’d like to think that somehow she … Nothing made her happier that at the very end, this woman who gave basically her adult life … She didn’t work, she just raised the family, those three sisters that Pete talked about, the brother, the sister … I’d like to think that she was saying, “I did it,” was somehow she bought all five of us plus her husband into this small 300 square foot memory care room for her final moments.

Jim Biggs (19:58):

If you know my mom, Pete, you know she’s out there listening. That’s her story and she’s sticking with it. But the point is you just don’t know, and you just never … I’ve seen too many family members over the years just throw in the towel. It’s just like, “She no longer recognizes me. What’s the point of me coming here?” Michael, all the listeners, encourage you just continue to do those things. You are making a difference. They may not always be able to articulate it. But I think at a certain level, they understand at that emotional level, they make that connection that there are people who come, there are people who care and that’s what’s most important.

Dr. Heidi Syropoulou (20:38):

It’s a great story, Jim. It reminds me that the more you can deal with this whole situation with humor, the better off you can be. It’s very hard to find humor during this. But actually there will be humorous moments, so please laugh at them. I had an uncle who died of Alzheimer’s disease, and he lived in a memory care unit for his last year of life. He had worked for the State Department for his entire life and had lived all over the world and been in charge in many economic programs. He worked for the AID development program for the US government. He was accustomed to telling people what to do.

Dr. Heidi Syropoulou (21:20):

In the memory care unit, he would walk around and had like almost a harem of other women who had Alzheimer’s disease. They followed him around and they had notebooks and pencils, and he was constantly telling them that they were going to have a meeting and they needed to take notes. The memory care unit absolutely loved it. We would go in and we would see him and he’d be very serious and they’d be taking notes and he loved it. So anything to keep people from being too agitated. It’s okay to live this fantasy wherever you are, but it’s good to laugh. It’s really good to laugh.

Jim Biggs (21:58):

I could share the one story. The retired Admiral. I used to work at a place called Ginger Cove, Annapolis, Maryland. I know it’s it sounds awful. But he was in a wheelchair, and the wheelchair had tipped over. So we didn’t know this. We were down the hall. Matter of fact, I was talking to his wife at the time. We had the nurse there and we hear this, “Man overboard. Man overboard.” She goes, “That sounds like the Admiral’s voice.” I’m like, “Let’s go.” So we walked down the hall and he was there. He’s like, “Man overboard.” So we helped him up. He was fine. Nobody got hurt. But the wife just thought that was hilarious. The first words out of her mouth was, “Oh, I can’t wait to share this story with the girls.” [inaudible 00:22:52], you’re absolutely right. It’s hard. It’s tragic. But as you said, there’s still some smiles if you know where to look.

Peter Panageas (23:01):

Well guys that’s yeah, I will, Michael and Heidi, I’ll let you both in, on this little secret and the millions of listeners listening to our podcast. Knowing Jimmy as long as I’ve known Jimmy, he probably deserved those belts. I say that lovingly as my brother-in-law, and I love him dearly. He knows that.

Peter Panageas (23:22):

So look, I’m going to shift here. Heidi, I’m going to come back to you here. I think we do need to discuss, and it’s an important element is the first FDA approved therapy. Can you give us your thoughts on this therapy? I know there’s some controversy around it. Love to get your insight on that.

Dr. Heidi Syropoulou (23:37):

Sure. Great. Well, let me give you a little bit of history behind aducanumab, which the brand name is Aduhelm. In June 2021, the FDA approved the first new Alzheimer’s treatment in almost two decades. We don’t want to give people the impression there had been no treatments before, but they were 20 years old and honestly not particularly effective, but this is the first in almost two decades.

Dr. Heidi Syropoulou (24:06):

It was developed by two pharmacy companies called Biogen and Eisai. Essentially it is a drug that’s part of a class of drugs called monoclonal antibodies. They attack a protein that accumulates in your brain. Remember, I was talking about professor and Dr. Alzheimer said on the pathology of the brain of the woman, he did an autopsy on, they found amyloid plaques in the brain, which is an accumulation of this protein amyloid. Essentially this monoclonal antibody, Aduhelm, attaches to this protein in the brain, which then theoretically promotes an immune system response on the person to remove that protein. That’s the science behind what the drug does.

Dr. Heidi Syropoulou (24:51):

If you go back a couple of years before that, that was 2021 that the FDA approved this … In 2019 Biogen was in the process of their clinical trials, and they had actually halted two clinical trials in patients. These trials were done on early stage Alzheimer’s patients and even patients that have sort of pre-dementia. It’s called mild cognitive impairment, but they had to hold those two studies after an independent data monitoring committee found that they were unlikely to kind of meet their endpoint, and the endpoint being that there would be an improvement in the patient’s cognition. But later Biogen then said one of the trials did in fact meet its endpoint goals, seeing a reduction in that cognitive decline. This was with a very high dose.

Dr. Heidi Syropoulou (25:37):

After receiving the drug’s marketing application in 2021, the FDA advisory board … Keep in mind this is a group of physicians and specialists in the field of that disease process and research in general who advise the FDA on drugs. Usually the FDA pays attention to its advisors. But anyway, the advisory panel were very doubtful of the evidence of the efficacy of the drug. 10 of the 11 members voted no for the drug, but of course they’re not the ones that are approving it, they’re just advising. 10 out of the 11 said, “No, we don’t recommend this drug. We don’t think it’s going to be efficacious. There’s not enough evidence yet.” Despite the panel’s recommendation, the FDA approved the drug under this new policy they have called accelerated pathway approvals where approval can be given if a goal can be achieved, is felt to be likely to predict clinical benefit for the patients. The problem is there isn’t a lot of evidence yet on the likelihood of Aduhelm translating into meaningful benefit for patients with Alzheimer’s disease.

Dr. Heidi Syropoulou (26:50):

It’s worth noting that another pharmaceutical company called Elan many years ago, I want to say 2012 or 2013, also did similar work on a monoclonal antibody test that targeted and tried to reduce amyloid in the brain, and it did not translate into clinical benefit. It’s one thing to say we can get rid of the protein, it’s another thing to say that there’s actually going to be a change in your ability to think. We don’t know that. So it was such a kerfuffle that three members of that panel resigned. There was really quite an outcry within say the health insurance industry members … You name it, people were upset. Some still felt that we still need a treatment so we need to put it forward.

Dr. Heidi Syropoulou (27:37):

The other problem is that the drug cost $55,000 a year. For an unproven treatment, this is scary to people. We’re talking millions and millions and millions of people who could be using this. So now you’re seeing the cost of health care just go through the roof because of course, it’s not just your health premiums that’s going to go up. It’s significant. We know now, it’s been a year, as of last January, Biogen has cut the cost of the drug down to $28,000. Most insurance companies are saying, “We’re not approving this as a regular routine drug. We are considering it investigational.” Medicare just came out in January and said essentially, “We will offer it to Medicare members, but you have to be involved in a clinical trial.” So they put quite a few restrictions on it, which I think is appropriate. That’s the story of Aduhelm. More to come. We shall see.

Peter Panageas (28:35):

Yeah. Thank you. I know it’s relatively new, and I know that there’s a long journey ahead of that, but I guess we could say it’s a step. Mike, let me ask you this question and then Heidi and Jim, I’d love to get your perspective on this as well. So Mike, you mentioned earlier to our audience that you’ve taken a step with your dad now to put him into a … Today’s his first day, right?

Mike Burnham (28:55):

Yes.

Peter Panageas (28:55):

His first day. It’s a-

Mike Burnham (28:56):

It’s a daycare program.

Peter Panageas (28:57):

It’s a daycare program facility. You bring him there, he spends the day and comes back home. How did you guys get to this point? What type of research did you do? What type of avenues did you go down to kind of get to this point? Dr. Syropoulos and Jim, if I could ask you also if you can share with our audience after Mike talks about his journey here and how he got to this point in his decision and some of the resources he tapped into, if you can also share with our audience, some other food for thought ideas, resources that they should be considering as they’re going through this journey. So Mike, we’d love to hear your story.

Mike Burnham (29:36):

Sure. I think as I mentioned, the first step that mom took was allowing someone to come into the house to give her some respite care. Again, it was only two to three hours at a time, but that certainly was more than she was getting just as late as November of last year. When my sister, my mom and I got together, we started to talk about longer term plans. We started to look into other options. One of them was Veterans Affairs because my dad served proudly in the Air Force back in the mid-60s. At the time when we started that process with the VA system, I think he was classified sort of on the middle of the scale for eligibility. I think if they looked at him today, they might reclassify him and say that maybe he is eligible for something there.

Mike Burnham (30:37):

We’re sort of looking at stages. If mom need a procedure, what would that plan look like? There’s a VA hospital that’s very close to my parents’ home, that that would be an option. But as things really have progressed over the past six months, I’ve spent a number of weeks or weekdays here talking with people, visiting these facilities and trying to decide with my mom what is the best option for us. At the time, long-term care I think is still on the horizon. But these day programs, I think as Jim mentioned, stimulation, not being with your TV or it’s very passive. He spends a lot of time watching TV. We visited the Cheer Center, we visited a couple nursing homes and we visited the Easterseals Program. They are very close by, local to my mom and dad’s house. I started to note that there are some really good programs out there that for a, I would say it’s a lower cost option, which is just a daycare kind of program, the benefits to both of them could be significant.

Mike Burnham (31:58):

My dad could get some stimulation. There are friends that he grew up with that are in that program because it’s a small town, and a lot of the people still stuck around in that small town so there might be some name recognition or friendship recognition or making new friendships for dad. Plus, all the programs that they have for the patients there that would be significantly better than just parking himself in front of the TV and falling asleep. It would offer an opportunity for mom to have a more significant break during the day. I still say we’re maybe in the middle stages of our journey, but we’re certainly further along than we were a year ago. I thank my sister and my mom that we came together to start planning this out and realizing some of these goals.

Peter Panageas (32:51):

Jim, Dr. Syropoulos, love to get some insight from you as well. Thanks, Mike.

Dr. Heidi Syropoulou (32:57):

I would say two very specific pieces of information that I think are helpful. When I was taking care of patients with dementia, I always recommended one book. This book really to me is the gold standard for all caregivers who are taking care of patients who have dementia. The title of the book is The 36-Hour Day. As it implies, to a caregiver the day is not 24 hours, it’s 36 hours. This book is about 40 years old. It was written by a geriatric psychiatrist out of Johns Hopkins named Peter Rabins and a nurse educator named Nancy Mace. Peter Rabins and Nancy Mace. It’s probably on its sixth edition at this point. It is an absolute gold mine of information. Very easy to read. It should be the resource book that all caregivers turn to when they’re trying to figure out about dementia and Alzheimer’s.

Dr. Heidi Syropoulou (34:00):

I know, many times you would think this would be a great book in the very beginning stages, but I often would have caregivers come back to me and say, “Oh wow. I reread that chapter on urinary incontinence. It was incredible.” Or two years later, “I reread that chapter on having teenagers in the house.” I mean, it has got so many pieces of information. I like reading it just for myself. I don’t have anyone yet in my immediate family has Alzheimer’s. That’s information number one. That book, The 36-Hour Day, it’s a paperback. You can get it anywhere.

Dr. Heidi Syropoulou (34:36):

I think the other piece of information is that if your loved one has a Medicare Advantage plan, not regular Medicare, but a Medicare Advantage plan, most Medicare Advantage plans have 24-hour hotline nurses and case managers and social workers. If you have questions or concerns, if you don’t know how to do this … “How can I find an adult daycare center? Where are resources? Your Medicare Advantage plan case managers are a absolute wealth of information for people. I would urge people to use that resource,

Peter Panageas (35:13):

Go ahead, Jim.

Jim Biggs (35:14):

Pete, again, I at this point, tell people get either a pencil out or fire up their internet because most of the stuff I refer people to are available online. Number one, to me the gold standard is the Alzheimer’s Association. That’s www.alz.org. It’s available in I think up to 17 or 20 different languages. If you have a family member sometimes who might be first generation US and the caregiver’s second generation, you need to get that information in a well-translated deck. The Alzheimer’s Association to me is the gold standard.

Jim Biggs (35:55):

The government. It’s just alzheimer’s.gov for the government, for the suffix. It’s just a lot of government resources that have been pooled together.

Jim Biggs (36:05):

The third one is dementiasociety.org. Again, the Alzheimer’s Association can almost be overwhelming. Dementia Society just, it seems like it’s easier to make that connection with some of those resources. You don’t have to kind of go through the Alzheimer’s Association can be a little bit overwhelming just in terms of the organization of the website.

Jim Biggs (36:29):

Then again, assuming most of your listeners are Blue Cross Blue Shield, your Health of America articles that are available online, there’s a lot of good resources and just a lot of good information in there as well. So I think Blue Cross Blue Shield. Again, it’s nice, it’s informative, and I think it would be an interesting supplement to this particular podcast.

Peter Panageas (36:52):

Yeah. For our listeners, we’ll make sure we put this level of detail in our show notes as well because there’s a lot of valuable resources out there Jim, Heidi and Michael just spoke about. So Dr. Syropoulos, let me ask for our audience wondering what if any preventative measures can be taken in regards to Alzheimer’s?

Dr. Heidi Syropoulou (37:12):

That’s a great question. It’s a very common question for patients. We all want to know, we all are aware of the disease and we all are extremely interested in trying to figure out, “How can I protect myself from getting this disease?” I want to just level set first and foremost and make sure people understand you’re going to see a lot of things in the news and a lot of advertising for this exercise and that food and this supplement, whatever it is. The bottom line is there is still no magic bullet. There is no specific type of food or specific exercise, but there has been a lot of research. What we do know is that the bottom line is that adhering to the same recommendations we’re all supposed to already adhere to to prevent diabetes, to prevent congestive heart failure and coronary artery disease and stroke.

Dr. Heidi Syropoulou (38:05):

In other words, don’t smoke, exercise regularly and persistently, maintain a good weight, not too heavy and not underweight, maintain and be involved mentally and socially. That’s really critical. Don’t isolate yourself. Then take care of those kinds of medical problems besides dementia that arises. If you’ve got high blood pressure, treat it. If you’ve got high cholesterol, treat it. We do know that many people have amyloid accumulated in their bodies. It doesn’t necessarily mean you have Alzheimer’s disease.

Dr. Heidi Syropoulou (38:42):

We also know, interestingly enough, we have a lot of genetic information that there are certain genetic predispositions to having Alzheimer’s disease. About 90% is what we call sort of nonfamilial meaning everyone’s pretty much the same risk of getting it. But even within that group, there are some genes that may make you more likely to get Alzheimer’s.

Dr. Heidi Syropoulou (39:06):

Then there are about 10% of patients with Alzheimer’s who have a very high genetic prediposition. They have a couple of different genes that are coded for that cause many members of their family to have Alzheimer’s. It’s interesting, even having a genetic risk that is higher than normal, if you during your life have had adhered to these wonderful lifestyle modifications of not smoking and exercising and keeping your weight down and eating a wonderful diet of green leafy vegetables and grains, you can lower your risk of Alzheimer’s disease even when you have a higher genetic risk.

Dr. Heidi Syropoulou (39:41):

So no magic bullet, but do the kinds of things we’ve been telling everybody to do all these years anyway. You can’t sit around and eat bacon and eggs all the time for your adult life and expect that you’re not going to have a problem. It’s my big pearl of wisdom there.

Peter Panageas (39:57):

Well said. Very, very well said. Look, I can’t thank the three of you enough for today. It’s such a relevant topic. Coming from a clinical perspective to obviously the transition from home to facility, and then obviously Mike being a caregiver. Amazing work by the three of you. Look, let me just ask each of you before I provide my closing comments … I do this with all of our guests … If there’s any one or two or three things that you’d like to share with our audience, what would it be? Dr. Syropoulos, I’m going to start with you first.

Dr. Heidi Syropoulou (40:29):

I’d say number one … These are all directed to caregivers … I would say number one, don’t forget that the behavioral issues that come up with dementia are really signs of the disease, that the person isn’t necessarily trying to bother you. That’s just one of the most challenging things with behavioral problems is the caregivers often feel as though they’re intentionally bothering them. It’s just like if you have chest pain, you have heart disease. You have a behavioral problem when you have Alzheimer’s. That’s number one.

Dr. Heidi Syropoulou (41:05):

Number two, caregivers, please be kind to yourself. You’ve taken on a new job and you’re learning the new job and you’re going to continue to learn. You have to be kind to yourself, and you have to loop in as many family members to help you as you can.

Dr. Heidi Syropoulou (41:22):

Three is to try as hard as you can to find the humor because there will be humor. Those are my three pieces of advice I would say.

Peter Panageas (41:32):

Thanks, Heidi. Jim?

Jim Biggs (41:33):

Pete, that’s like following the Rolling Stones because everything’s derivative from that. That’s literally a perfect answer. I won’t waste your time or the listeners’ time improving upon it. Just go back, hit rewind button, listen to Dr. Heidi again.

Peter Panageas (41:52):

Well said. Mike?

Mike Burnham (41:54):

Sure. I think it’s been difficult to see my dad who was such a strong, smart, stoic, caring person regress due to this disease. But I think the one thing is he can’t help it. The patient can’t help it, and he’s going to continue down this path. Caregivers need to know that they’re being thought of so they need your love encouragement, support, time. I’d suggest if there’s anyone out there that you know is providing care to someone with Alzheimer’s, reach out to them. They want to know they’re not alone. They want to know they’re being thought of. If you can, donate some of your time to the caregiver. It’s invaluable, and most of all, it’s so sincerely appreciated.

Peter Panageas (42:48):

Thanks, Mike. To team Burnham, Michael, Karen, and the kids. To Sandy [Wilgus 00:44:59]. To Cindy [Masentelli 00:44:59]?

Mike Burnham (42:59):

That’s right. And her husband, Brent.

Peter Panageas (43:02):

And her husband, Brent, for being there and taking care of dad. Incredible courage, strength. To Jim and Tim Biggs and to Sue and Nancy and Maryann Biggs and all the incredible work you did for taking care of mom and dad, you guys were all angels. Particularly the three girls were just amazing. To the millions of listeners who are listening to this who are going through the same journey that the Burnhams are going through and that the Biggs family has gone through, you’re all doing God’s work. So with that, I cannot thank our guests enough. Dr. Syropoulos, Mike and Jim, you are just amazing. Thank you so much for being with us today. Really appreciate it.

Dr. Heidi Syropoulou (43:43):

Thank you, Peter.

Mike Burnham (43:43):

Thank you, Peter.

Jim Biggs (43:44):

Thank you, Pete.

Peter Panageas (43:45):

To our listeners, thank you. I hope you’ve enjoyed our discussion. Hopefully for those of you who are going through this journey, some of the feedback that you received today is going to be helpful to each of you and your families. Check out the show notes for more information at insights.ibx.com. That’s insights.ibx.com. Thanks again for joining us gang, and we’ll see you next month.

Peter Panageas (44:12):

For many of you who’ve listened to our initial podcast, you’ll know the personal story of Mike Burnham’s father, Claude “Skip” Burnham and his battle and family’s battle with Alzheimer’s. It’s sad to share this with everybody here, but we thought it was important to give everybody an update prior to listening to part two that unfortunately Mr. Burnham has passed. Family are all doing well. Services were conducted this past weekend, and Mr. Burnham is in a much better place today. So as you listen and prepare for part two of our podcast, I wanted to make sure everybody had an update on the status of Mr. Burnham. On behalf of everybody here at Independence and going out to the Burnham family and all of our listeners, our prayers and thoughts are collectively with you and your family during this tough time. Thank you.



Source link