In episode 12 of IBX: The Cover Story, I invite three special guests to discuss Alzheimer’s Disease from the perspective of personal experiences, clinical care, and facility management.
My guests are Dr. Heidi J. Syropoulos, medical director for Government Markets at Independence Blue Cross (Independence), Jim Biggs, chief executive officer, West Bay Senior Living LLC, and Michael Burnham, a friend of mine whose father battled Alzheimer’s.
Listen to our conversation here:
A full transcript of the episode is also available below.
Episode 12 Show Notes
Below you will find some of our favorite quotes from the twelfth episode, sources that were mentioned, and a segment breakdown. As always, thank you for listening!
“Alzheimer’s really is a form of dementia, and dementia is really a syndrome, and it really is characterized by progressive loss of your memory, plus loss of other cognitive functions, not just your memory. It just happens to be that Alzheimer’s is the most common type of dementia.”
– Dr. Heidi Syropoulos
“When [my mother] is able to do normal things like go to church, have a lunch date, go shoe shopping. Oh my gosh, I spent the day with Dad, and she said the first thing she did, she went to the store and bought shoes. And just the joy on her face. It’s that being able to recharge, I think, you could see the joy in herself and realize that those several hours are just exactly what the primary [caregiver needs]. When I say Mom is the primary caregiver … I say I’m a caregiver, but Mom is number one. Listen, if you have a family member or friend who is a caregiver, please consider volunteering some small moment of time because you do not realize how powerful that moment could be for the caregiver.”
– Michael Burnham
“I think number one is it’s important for both the families and the resident to make that journey together. It’s not uncommon to have, if there’s a spouse or sometimes…a caregiver, they will come into the room, we’ll put a cot in there and they can sleep in that room with the same person. Just because we found it helps with the transition.”
– Jim Biggs
Episode Segment Breakdown
0:00 – 11:18: Dr. Heidi Syropoulos provides insight on Alzheimer’s as a disease and patient care.
11:18 – 20:25: Michael Burnham details his father’s diagnosis and challenges for caregivers.
20:25 – 31:27: Jim Biggs offers information on options available for those with Alzheimer’s and how care facilities approach the disease.
31:29 – 41:09: The group discusses Alzheimer’s, including what caregivers must consider, how care facilities help ease the transition, how the disease progresses, and more.
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Episode 12 Transcript: Navigating the Difficult Challenges of Alzheimer’s, Part 1
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. 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 healthcare 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 (00:46):
Hi, everyone. This is Peter Panageas, and welcome to Episode 13 of IBX: The Cover Story. For this month’s episode I’m going to discuss a topic that my family personally has been impacted by, and I know for many of our listeners, your families have been impacted by it too. Our podcast this month is going to actually be broken into two parts. We’re covering a huge array of topics from what it is to be a caregiver to the journey of moving from home into a facility, and then finally from a clinical perspective.
Peter Panageas (01:16):
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 mine’s husband and a caregiver to his dad, who’s living with Alzheimer’s, and last but not certainly least is my brother-in-law, Jim Biggs. Jim is the CEO of West Bay Senior Living in Irvine, California, so Dr. Syropoulos, Mike, and Jim, thank you all so much for being with us today.
Mike Burnham (01:45):
Yeah, thank you for having me.
Jim Biggs (01:46):
Nice to be here.
Dr. Heidi Syropoulos (01:47):
Thank you for having us.
Peter Panageas (01:48):
Dr. Syropoulos, let me start with you. Can you tell our audience a little bit about what inspired you to get into geriatric care?
Dr. Heidi Syropoulos (01:55):
Well, I come from a long line, actually, of family practitioners, doctors who worked in rural Ohio. My grandfather, my great-grandfather, my great-great-grandfather, actually going all the way back to the Civil War, were at that time general practitioners, because at that point family practice hadn’t become an actual entity, and although my father didn’t become a physician, I grew up hearing stories of what it was like. When I went to medical school, I really went thinking I was going to be a family practitioner. It was the only kind of doctor I had ever grown up seeing.
Dr. Heidi Syropoulos (02:34):
When I grew up and had a broken arm or something, it was always a family doc, but then in med school, when I did a variety of different rotations, I realized there’s things in family practice that I’m not sure I’m crazy about. I really did not like taking care of sick children. That was too much for me. I didn’t like surgery, and in the Midwest, I’m from Minnesota, at that time, in the ’80s, family practitioners were still delivering babies and they were doing basic surgeries, so I realized actually after process of elimination that it was really internal medicine or treatment of adults, non-surgical, that I really liked.
Dr. Heidi Syropoulos (03:15):
Then when I was in my residency in internal medicine, it became very apparent very quickly that the majority of people who I was managing and taking care of in the hospital were all geriatric patients. For some reason I just gravitated to the sickest, the most vulnerable, the most challenging, and I really, really liked talking to families. I loved hearing geriatric patients’ stories. I often felt when I was talking to patients that I was learning more from them than they were from me. That’s really what got me interested in geriatrics.
Peter Panageas (03:51):
Over the last year I’ve had the distinct privilege of hosting a handful of physicians, covering a host of topics, and I think thematically there’s one thing that’s resonated true with all people who are in medicine. You have a passion around or there’s been an impact as when someone was young, or there’s a family history, and it’s amazing that you’ve carried that tradition on of your family and entering a space that is very, very important to cover. As we’re talking about this topic here, if you could share with our audience from your lens, give us a brief overview of what Alzheimer’s is.
Dr. Heidi Syropoulos (04:26):
Well, Alzheimer’s really is a form of dementia, and dementia is really a syndrome, and it really is characterized by progressive loss of your memory, plus loss of other cognitive functions, not just your memory. It just happens to be that Alzheimer’s is the most common type of dementia. It’s name comes from a German physician actually named Alois Alzheimer, who I think it was 1905 or 1906, he was taking care of a young woman. When I mean young, she was in her 50s and she had a fairly rapid, over a couple of years period, a very significant memory loss, but also some behavior problems.
Dr. Heidi Syropoulos (05:13):
He was completely perplexed as to what she actually had, and she died within a couple of years. When she died, he did an autopsy, and found that her brain had very specific changes in there. There seemed to be a deposit of proteins and he named these two pathologic changes that you see in the brain, neurofibrillary tangles and the amyloid plaques. For decades we thought, really up until the 1960s, we thought that Alzheimer’s Disease because this woman presented much like someone at that time who we would have said was senile, remember that old term senile, meaning you’re just getting old.
Dr. Heidi Syropoulos (05:51):
We used to think that getting old was synonymous with losing your memory, so Alzheimer’s for decades was also called pre-senile dementia, meaning you only had Alzheimer’s Disease if you were a young person, but once you got to be old, then oh, that’s just senility. Well, in the ’60s a bunch of researchers looked at the brain biopsy of people who were in their 70s and 80s, who had what we thought was senility and lo and behold they had the same pathology on autopsy. We don’t use the term senility anymore. We know that dementia happens in young folks, but generally speaking happens in older adults, and that it is the same pathology.
Peter Panageas (06:36):
Building upon that, as one explores this and travels down this journey, what should a family or member look for in terms of evaluating when presenting to their primary care physician complaints of memory loss? What are some of the things that you would counsel our audience around as they’re going down this journey?
Dr. Heidi Syropoulos (06:55):
Well, first I would tell people that, and I would reiterate this, it is normal to have some challenges in your immediate recall, for example I go into another room and I can’t remember where I put my keys. Those are normal, and so everybody now says if they can’t remember things, oh, I must have Alzheimer’s Disease. Actually Alzheimer’s Disease is progressive, and the way in which the evaluation should progress is that you should speak to a physician or provider, someone who has knowledge about dementia, and the person who really should be in the room is not just the person who’s having the memory loss, but the caregiver absolutely has to be there, because you need a corroborating history.
Dr. Heidi Syropoulos (07:41):
Essentially what the doctor should be doing is taking a very extensive history. What do you mean when you’re saying memory loss? When did this start? What are the things you can’t remember? What are the other cognitive function problems you’re describing? Sometimes people come in and they don’t actually complain of memory loss. They just say well, he’s just really being very difficult. A wife will come in and say he is just so difficult. He won’t do what I’m saying anymore, and after you have a long discussion, you realize well, there’s some major things that he’s not doing anymore.
Dr. Heidi Syropoulos (08:17):
One is really getting an extremely important history, so you’re getting a subjective idea of the fact that there’s a memory problem. Then the provider is going to do an objective evaluation, meaning they’re going to test your memory. They’re going to ask you questions to find out what your memory is, and not just about your memory. They’ll ask you questions about can you perform certain tasks? Can you draw a clock? Can you identify things if I point to my watch on my wrist, but not say the word watch, can you tell me what that is?
Dr. Heidi Syropoulos (08:55):
Dementia patients often have language problems in addition to their memory problems, so one is getting a good history, and then once the provider really feels confident that there’s a dementia, the next part of the evaluation is doing tests to make sure and rule out what we would call treatable causes of dementia. These invariably, in the vast majority of cases, end up being negative, but we want to make sure you don’t have a rare cause of B12 deficiency or maybe you’ve got hypothyroidism or you have an electrolyte imbalance. You need a brain image to make sure you don’t have some very bizarre brain tumor, or maybe you had a stroke. You may still have dementia, but it may be that you had mini strokes and that’s what the issue is.
Dr. Heidi Syropoulos (09:41):
It’s not actually Alzheimer’s, so first and foremost taking a good history and second is running a battery of tests to rule out some of the treatable causes of dementia. I would say in the vast majority of cases, a physician who is knowledgeable of dementia can with good confidence come up with a diagnosis within one to two visits with a member. I will say that there are instances where it can be a challenge. I’ll give you some examples. It can be difficult sometimes distinguishing dementia from depression, to be honest with you. The person really is kind of withdrawn and they just don’t answer very much. That’s very difficult then to be able to tell whether they just can’t remember or they’re so depressed they don’t want to talk.
Dr. Heidi Syropoulos (10:25):
The other instances where it’s a challenge is that whether the history between the caregiver and the patient are very different. In other words the patient thinks they’ve got memory loss, but the family says I don’t know what you’re talking about, and the memory testing that the doctor does is absolutely kind of normal, and vice versa. The patient doesn’t think they have a problem, but the family says no, there’s something really different. In those cases, you can refer patients to a specialist who can do what I call neuropsychometric testing. These are a battery of tests that they take a long time. They can be hours long and they’re sort of a super testing of your cognition, and a really good neuropsych tester can sometimes distinguish types of dementia and they also are quite good at delineating whether the patient has a dementia versus a depression.
Peter Panageas (11:18):
Dr. Syropoulos, you touched on a few things there and I’m going to come back to you in a few minutes, because I really want to talk a little more about some of the top challenges that patients and families are having as they’re diagnosing Alzheimer’s and you touched on a few of them, and I want to come back to some of that in a few minutes. But one of the things you just talked about is caregiving, right?
Peter Panageas (11:36):
I’m sure many of us, if not each of us listening here today have experienced directly or indirectly the impacts of what it is to be a caregiver, and we’re just really blessed to have Mike Burnham with us. Mike, if you don’t mind me kind of pivoting over to you here for a moment, as a caregiver for someone with Alzheimer’s, share with our listeners a perspective into what it looks to provide care for your dad at home and the challenges that you are facing personally and your family and your mom in this journey. I think our listeners can learn a lot from your perspective.
Mike Burnham (12:07):
Thanks, Peter. I really appreciate being part of this podcast because it’s very near and dear to all of us as caregivers to be able to have a forum and a voice to talk about some of these things, because to be honest with you, we didn’t talk about it for awhile. I will give you some perspective. We started noticing memory issues with my dad back in 2012/2013. His official diagnosis wasn’t until 2016, and we used to joke about it for awhile, as well as he. He did as well. He’d self-diagnosed himself with CRS, which is can’t remember squat, you know? Things started to become more prevalent.
Mike Burnham (12:52):
He’d often repeat himself, repeat stories, ask the same questions over and over, and I thought it was more out of boredom, not knowing what to talk about versus the actual disease. Then the pandemic came and this really impacted both my mom and my dad, so my dad has other significant health concerns, COPD, coronary artery disease, and a couple other things. As the family we were very concerned for both my mom and my dad’s health and safety, so we stayed isolated from them. They became much more isolated from family and friends and quite lonely, and I would say as Dr. Syropoulos said, depression. They became very sad about their situation.
Mike Burnham (13:41):
As for Dad, especially over the past year and especially in the last six months, we’ve noticed a significant change. His short-term memory’s quite limited. He has had much more difficulty recognizing his family and even Mom sometimes. He had been much better at hiding that in the past when he didn’t recognize people. Now he’s come to grips with he doesn’t know who we are sometimes, and it’s quite sad. He has become increasingly agitated. He sleeps a lot, doesn’t want to go out of the house much, so there’s not a lot of memory or brain stimulation there if he’s just watching TV.
Mike Burnham (14:21):
He’s had hallucinations, so these are all the things that are listed on the Alzheimer’s website as warning signs, what you should be looking out for. Well, he’s ticking all the boxes along the way. There’s times where I think he’s regressed in his mind to back when he was a child. He often asks and demands that Mom take him to visit his childhood home so he can see his parents. They have long since passed, so we’re in a stage right now where we don’t really know what to expect every day. I’d say that most days are okay, but there are some that aren’t, and I think that’s what concerns me the most is how do we find the best solutions, the best care for Dad, while supporting Mom with regards to her mental health and safety?
Mike Burnham (15:06):
I think things have become significantly tougher, more stressful on Mom, who is my Dad’s primary caregiver. Karen and I live about two hours away, and my sister lives 6 1/2 hours away, and at that time, when all this was happening, we hadn’t enlisted in much help from the outside, especially during the pandemic, so Mom was the primary caregiver. I have to say my mom has done a Herculean, superhero, as many exemplary adjectives you want to throw in there, effort on taking care of Dad throughout the course of his disease. She manages everything, all his care, his medications, daily tasks, the house finances, but she is exhausted, and she needs time to herself to live a little bit, to experience life again.
Mike Burnham (15:52):
She has been solely focused on him, and she’s ignored herself. We do visit quite a lot more since the pandemic has sort of, I would say waned down a little bit, so Karen and I are down here quite a bit throughout the past year to do as much as we can for her, provide her with breaks, rest, but it’s not enough. I also want to mention the impact to family. It’s not just me and Karen and Mom that are impacted. It’s my kids. It’s somewhat disheartening to note that Dad doesn’t recognize them all the time, and they see his struggles. They see Mom’s struggles, and to be honest, I’ve seen some hesitancy in them when they’re around him because they don’t know how to handle it. We’re trying to tell them that this is the new normal for Dad and for Mom and for us, and we just have to do whatever we can for him and for Mom so that they feel the love and the comfort that they’ve experienced throughout our kids lives.
Peter Panageas (16:51):
Mike, let me ask you, and first of all thank you for sharing that with all of us. Very personal and very impactful, but very authentic. From the time your dad was not remembering things to, I guess his self-diagnosed of CRS, can’t remember squat.
Mike Burnham (17:09):
He doesn’t call it squat.
Peter Panageas (17:12):
Well, for our purposes here, we’ll call it squat. As CRS, I love it, between that point to the point where he was officially diagnosed, did you and your family, your mom and dad, did you guys talk about moving into an assisted living? Are you on that journey right now? Can you talk to us a little bit about that?
Mike Burnham (17:35):
Yeah. I think we ignored it, Peter, to be honest. It’s a significant financial undertaking, and I think Dad recognized the attachment that he has to the home, because they’ve been in that house for almost 50 years, that he doesn’t want to leave, but we’re at that point where one, Mom needs some respite care and we need a plan because if something happened to my mom right now, over the past year we’ve been working towards what is the goal? What’s the next step for Dad in his care? Is it set in stone? Absolutely not, but I think we’re getting closer to making some sort of realization that the short-term of Mom being the primary caregiver with some respite care is doable, but the long-term of some sort of assisted living scenario, hospice, whatever you want to label it as, I think it’s inevitable.
Peter Panageas (18:35):
Mike, I want to come back to you in a few minutes.
Dr. Heidi Syropoulos (18:37):
Oh, Peter, I was just going to-
Peter Panageas (18:39):
Oh, please, Dr. Syropoulos, please.
Dr. Heidi Syropoulos (18:42):
Listening to Mike share his stories, thank you for that, it highlights I think two things that caregivers and families want when they’re learning about the disease and living with the disease. One is to get a diagnosis, and he even said it took several years before that happened, probably because he may not have asked to be evaluated, I don’t know. But getting an actual name can be helpful, even if there’s no cure. Humans like to be able to name what it is that’s afflicting them. I’ve got this, I’ve got that. The other is understanding how to manage it, and I always have likened dealing with a chronic illness, of which dementia and Alzheimer’s Disease is a chronic illness, but so is diabetes, so is congestive heart failure, so is emphysema.
Dr. Heidi Syropoulos (19:32):
I always would talk to my patients when they were given a diagnosis of a chronic illness, and I would say well, I’m sorry to tell you, but you now have been given a job that is more time consuming than your regular job and unfortunately if you’re retired, you now have another job back and it’s a job you don’t want. It’s a job you didn’t apply for. It’s a job you don’t know how to do, and it’s a job you can’t quit. Imagine if you’re a caregiver. Now you have a job and you didn’t anticipate it, and it has nothing to do with you. It has to do with your family. Interacting with people who can help you, it’s just validating that you have a huge thing on your plate and rallying as many resources as you can to help you is worth it.
Peter Panageas (20:25):
Yeah, and it’s such a great point, and Mike, I do want to pivot back to you in a few minutes because I do want to explore a little bit more about aside from the obvious impact to you and your family, but also the care for your mom, and as she’s going down this journey and the impact it’s made to her and what the next steps as you’re planning this out, what that will mean for her. I do want to come back to that, but in light of, Mike, what you just shared with us and appreciate your authenticity around that, and Dr. Syropoulos, the elements that you’re talking about, so Jim, I’m going to pivot over to you. For many of our listeners who are just like Mike and his family and caring for loved ones with Alzheimer’s in their own homes, do you have any advice for when it might be the right time to start looking for additional care, what options one would consider?
Jim Biggs (21:16):
Pete, excellent question, and I think what probably struck me with a lot of these comments was I’m here today in the spirit of transparency. My mother passed away of Alzheimer’s. It was knowing what I know, watching that struggle that her and my father went through, not always making the textbook decisions, but I allowed them to make those decisions, because I recognized in my heart and in my brain that again, there’s no right or wrong answer. It’s a progressive disease as the doctor indicated. How it affected my mom will be different, how it affects Michael’s loved one, it’s going to affect everyone a little bit differently, and so consequently there’s really no uniform way to approach this other than to remind people, and I love the doctor’s comments, it’s a disease.
Jim Biggs (22:08):
It’s funny. I lived and worked in China for six years. I did a startup, ironically enough our first project was a memory care property in Tianjin, opened it up in 2012. Interesting that the Chinese philosophy of filial piety, that again, above all we’re responsible to take care of our parents, and we say that’s different than in the US. I’m like no, no. When you break down, and there’s some data out there that strongly suggests about 88% or 85% depending upon which reference you look at, of care for Alzheimer’s, people or people with dementia, is provided by the family. In China that’s 91%, the major difference being simply put, we have a lot more options here in the US than they do in China.
Jim Biggs (22:54):
Again, there’s nothing cultural or different about this. We all want to take care of our parents, but to kind of bring in that filial piety concept, I think every family who makes the decision to move into a memory care or an assisted living property understands that with their particular set of circumstances, the better environment for the family. It’s not just for the resident, but it’s for the family. It is a family decision. When the families come in, not only for the medical appointments, but when we bring people into our properties, we do prefer to have, whenever possible, both the decision maker and the primary caregiver in the room along with the resident for a lot of those same reasons that the doctor indicated. It’s just that the caregiver has some unique knowledge.
Jim Biggs (23:42):
Some of the questions which we ask the group are number one, why today? What prompted you to come in today to seek information? It’s just interesting, statistically speaking, one out of three it’s been a fall, and the other 33% or the next 33% is specifically the desire to have more socialization. We’re very concerned the introversion, the not getting out, not doing those things and again I’ll personalize it with my mom. She was an extremely outgoing, gregarious person, and yet as this disease symptoms progressed, my father, God bless him, made that unilateral decision that it’s just socially awkward to bring her out, to do the cards with the friends, to do the night things. That made his world and her world a little bit smaller and smaller.
Jim Biggs (24:38):
I’m out there on the other side and saying hey, socialization is one of the better things that a community can offer. It’s stimulating, it kind of exercises the brain. It gives people the opportunity just to continue to interact with other people and that’s something they just weren’t getting at home. Again, it’s a difficult decision, but understanding why they came here today helps frame the issue because the other aspect of this, and we’ll go into all the details with the time, but we all focus on the memory care aspects, yet my mother passed away from pancreatic and liver cancer, and we found that out two days before she passed. It was just everybody’s so focused, at the time she was in a memory care facility.
Jim Biggs (25:25):
They were providing terrific care. We loved those people. We loved those nurses, yet there’s more to life than Alzheimer’s and dementia, and in her case there was more to her death. It’s just important not just to get the physician’s buy-in at the time for admission, but that continuous because other health issues do emerge. That’s what we talk about as well, and with the nurses we have a lot more eyes and ears typically in a property that can be more in tune with knowing what to look for.
Jim Biggs (25:55):
But the caregiver, and that’s typically the oldest daughter, statistically speaking we find that most of the decisions about the care and most of the care itself falls on the shoulder of the oldest daughter. She will coordinate the team, and in my family we were textbook. My oldest sister was the primary caregiver if you will, supported by the other two sisters and supplemented by the expert, who at the time was living in China, so it was kind of awkward for me. Wasn’t quite there to get that upfront and personal, but was always available for phone consults.
Jim Biggs (26:31):
When I came there, it was a little bit more striking with me because where they saw the slow progression of the disease, I would see it in the chunks. You’d have some pretty profound differences in that four month period. We’ve looked to engage that caregiver. We do emphasize, Michael you mentioned that the Alzheimer’s Association has a wonderful caregiver packet. They provide the training. They talk specifically about how to interact with the residents, what to do if they’re agitated, what to do if they can’t sleep at night, and just to give people that information that they can apply to make a positive difference. It does help support the family decision that hey, if we can manage this it’s not a bad thing either.
Peter Panageas (27:14):
Jim Biggs (27:14):
Peter Panageas (27:15):
Can I just ask a question of you here? Mike talked a little bit earlier about, Mike, you’re on your journey now of exploring options for your dad and your mom, and this is a very emotional thing. There’s a financial component of it, there’s a emotional component of it, and I know you’re right in that realm, right, Mike? You’re just starting that whole process, and there’s probably many, many listeners here who are probably in the exact same space that you’re in right now, Mike.
Peter Panageas (27:43):
Jim, if I could kind of ask you this question. For Mike and his family, and many listeners that are in this space right now, talk to us about what it’s going to look like to transition a person with Alzheimer’s into a care facility like yours. What type of care would they get? What type of care would their loved ones get as they’re transitioning from home into a facility? Can you share some insight there?
Jim Biggs (28:06):
Sure can, Pete. I think number one is it’s important for both the families and the resident to make that journey together. It’s not uncommon to have, if there’s a spouse or sometimes there has been the caregiver, they will come sometimes into the room, we’ll put a cot in there and they can sleep in that room with the same person just because we found it helps with that transition. It’s not for an extended period of time, but I’ve seen it for as much as a week. The doctor could probably talk a little bit more about transfer trauma. We see those symptoms. It’s just a lot of what we know about memory care is you’re in a comfortable environment in the home.
Jim Biggs (28:48):
Mike talked about that. He knows the number of steps, he knows the routines. He knows where the kitchen is. He knows where the bathroom is, and again, everything we’re learning about Alzheimer’s is you lose that capacity to bring in and absorb new information. Now I may remember 50 years ago what my house looked like, but you’ve suddenly put me into a new environment, and so we as the providers and the communities, we focus a lot on that first couple weeks, just with establishing new routines, because we find that’s one of the biggest problem areas we have.
Jim Biggs (29:22):
It’s just people can’t find their way back to their room. They can’t find their way to the dining. Working with in some cases the primary caregiver, and some if there’s no caregiver available we assign a staff member and they become the buddy system and they work together to build that relationship to help people get better orientation with their surroundings. Number two is it’s intimidating. Those of you who have gone into university or into the army, you remember those first couple days where it’s just like I just don’t know. This place seems so big. It seems so overwhelming. I’m just not sure what to do.
Jim Biggs (30:01):
Yeah, paying particular attention to that, and then Mike, we even recommend if there’s blankets, pillows, some of those things that are familiar, a lot of the research has suggested that sense of smell is sometimes one of the things not necessarily affected by the Alzheimer’s. It’s one of the last senses to go and so that can be very powerful. It’s funny, with my mom it was a running joke. We used to give my dad Old Spice every Christmas, and it’s like you can’t find good Old Spice anymore, but it was like we need to go on Ebay and find some of this and just put it on because the answer is we really don’t know what goes on.
Jim Biggs (30:42):
Then there are random moments of lucidity that just sometimes you get those rare glimpses of insights into that they do understand where they’re at. They understand their environment, and it’s important that the staff, facility recognize these and kind of work with the families as well to make sure we share those experiences. Yeah, you can’t be in this business and not have some of those “I can’t believe that happened” moments, and we work very diligently with the families both if they want to be there for the meals. There’s no visiting hours in memory care. It’s whenever the families want to come and see, but yeah, it’s just to make it as comfortable as possible for the families.
Peter Panageas (31:27):
Thanks, Jim. Thanks.
Dr. Heidi Syropoulos (31:29):
You know, Peter, I would add to that that transition from home to another living facility, Jim is spot on, describing the need for Alzheimer’s patients to have a schedule, to have some of the same smells, the same sounds, the same thing they’re seeing to establish a schedule. But it is true that any time you are removed from that schedule that you have established, whether it is a permanent move to a memory care center or even worse, now you’ve got a pneumonia and you’re in the hospital, you are much more likely, it’s worse when you go in the hospital, you’re much more likely to have actually perhaps a little bit of a setback.
Dr. Heidi Syropoulos (32:14):
You may notice initially some worsening in your behavior, some worsening in your cognition. It’s not uncommon at all in the hospital for a demented patient to also have a delirium on top of that. In other words really, they have no idea what’s going on. It’s very scary, and so getting people back to a routine as quickly as possible, and the memory care units are really good at this. They know exactly what they’re doing.
Jim Biggs (32:43):
Yeah, it’s that interaction, and Michael, if you were coming in, the staff there would be asking some questions. You might be wondering, but it’s like what’s the favorite food? What’s the favorite snack? What’s the favorite music? All those things, when you do get those agitation, sometimes that behavior, having that familiar music, that kind of calms people down. Wow, they just love those chocolate chip cookies. We will have those chocolate chip cookies available, and it’s whatever we can do to help just restore a little equilibrium, give everybody a chance to calm down. Again, it’s that knowledge.
Peter Panageas (33:25):
Mike, earlier you expressed caring for your dad is probably overwhelming, it’s taxing, it’s challenging, and probably a lot of our listeners are in the same, again, same space that you’re in right now. Jim and Dr. Syropoulos talked about some incredible things as it pertains to transition from home to facility. We heard things like routine, familiar, spice, Old Spice, the smell, the taste. But Mike, from your lens, from your perspective for our listeners here, talk to us about, as somebody who’s supporting your mom, what elements could a caregiver do today to help make this transition, things that you’re experiencing, the things that have been positive? Can you talk a little bit about some of the elements of that?
Mike Burnham (34:09):
Sure. I think people have to understand that caring for a Alzheimer’s patient involves a team, and again, there’s no roadmap, but I think this is a great conversation that we’re having today because it gives you some perspective from all aspects. But as I mentioned, you can’t do it alone, and I think it’s taken awhile for my mom to finally realize that it’s better to accept outside help, search for some outside help, and this was a major milestone for our family.
Mike Burnham (34:48):
I go back to what was mentioned earlier about the patient might recognize that something is wrong but the caregiver, whether they have blinders on or they don’t want to accept that something’s wrong. There was a time that us that weren’t involved, we were given the snapshot window of what my dad was going through versus the everyday that my mom was experiencing with him. My mom, I thought, was not seeing the same individual that we were, but over the past few months or so she’s been much more open to getting some help and care for herself. This is a major milestone for the whole family.
Mike Burnham (35:30):
She does have someone coming every week. My cousin, God bless her, she’s been coming every week just to spend a couple hours with Dad so Mom can do some of those things, get some respite care for herself, go plan to go shopping or a lunch date. When possible, wherever possible, Karen and I are there to help out as well, and I think these small moments of normalcy, I think these can help the caregiver recharge, and I notice that with Mom. When she’s able to do normal things like go to church, have a lunch date, go shoe shopping, oh my gosh.
Mike Burnham (36:08):
I spent the day with Dad and she said the first thing she did, we went to the store and bought shoes, and just the joy on her face. It’s that being able to recharge, you can see the joy in herself and realize that those several hours are just exactly what the primary, I’m going to say Mom is the primary caregiver. I say I’m a caregiver, but Mom is number one. Listen, if you have a family member or friend who is a caregiver, please consider volunteering some small moment of time because you do not realize how powerful that moment could be for the caregiver.
Peter Panageas (36:44):
You know, you talk about-
Dr. Heidi Syropoulos (36:45):
Peter Panageas (36:46):
Please, Heidi, please, go ahead.
Dr. Heidi Syropoulos (36:48):
I was just going to say, Mike, you’re making me think of other things too and that is I think something else is very critical in the early stages of Alzheimer’s and dementia, when the patient’s still kind of aware that something’s going on and it’s quite early. Certainly anybody who doesn’t have dementia, you need to make sure you have an advanced care planning document in place.
Dr. Heidi Syropoulos (37:16):
You need to have a durable power of attorney for healthcare. You need a surrogate decision maker document or you need a living will. You need, at the bare minimum, to have had a conversation with your family members about what kind of care you would like if you had Alzheimer’s Disease. What are your goals in life, what you do or do not want. Many people have a lot of trouble imagining that, but some people are very specific about what they do and don’t want.
Dr. Heidi Syropoulos (37:48):
The more you talk about it, the more the caregivers then feel not quite as guilty when they’re not doing things they might ordinarily do for someone, but they know that that’s what their loved one wanted. I don’t know if that’s something you guys managed, your parents took care of beforehand or not, I don’t know. But I think I would urge our viewers to really make sure that they have advanced care planning documents in place. Just critical.
Mike Burnham (38:16):
I appreciate you bringing that up because we have, over the past year, we’ve started taking all those necessary steps to plan for what the future states. We’ve addressed a lot of the legal things, updating wills, power of attorney, deeds, finances, to make sure that Mom and Dad are in a better standing as things progress.
Mike Burnham (38:38):
We’ve met with several organizations just to learn about what services are available for memory care, either through daily programs or extended stay, and to update you, today was my dad’s first stay at what they call the Cheer Center. It’s a facility that specializes in memory care. I don’t have any update on how it went, but again, this was a huge step for Mom and for Dad to take. We recognize this is going to be a long haul, but we want to be ahead.
Dr. Heidi Syropoulos (39:18):
Mike, could I ask-
Mike Burnham (39:18):
Oh yeah, sure.
Dr. Heidi Syropoulos (39:23):
Mike, can I ask is this a facility where he’s going to live or is this a day program?
Mike Burnham (39:27):
No, it’s a day program.
Dr. Heidi Syropoulos (39:28):
Oh, that’s wonderful.
Mike Burnham (39:29):
Yeah, and they specifically cater to those needing memory care, so it’s operated through a lot of grants and for nominal donations. I’m prayerful that things are going well today. This might not be the answer, but at least it was something that we’re trying. We just want to get ahead of the progression, to be in a much better state than we were a year ago. As I mentioned I just wish there was more of a roadmap for Dad’s care, but I think, as Jim mentioned, every patient is unique in their journey and where they’re at at the time where they need the care. We have to adapt ourselves to that. How’s Dad going to react? How will Mom react? What are all the options? How do we best funnel our attention towards what is best for them?
Peter Panageas (40:28):
Mike, thanks so much for that, and to Jim, thank you, and Dr. Syropoulos, thank you all so much for your contributions today. For our listeners, this ends part one of our podcast. Part two will be released very, very soon. Please stay tuned for part two of our podcast. Thank you all so much for listening, and again, thank you, Jim. Thank you, Dr. Syropoulos, and Mike, thank you. 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.