This is Aunt Mary’s Story with Alzheimer’s Disease and how the profession of Physical Therapy can help patients with Alzheimer’s.

This episode tells the story of Aunt Mary through the words of Physical Therapist Elizabeth Kerrigan. In it we take a look at how the profession of Physical Therapy can impact patients and families with Alzheimer’s Disease.

To tell this story Elizabeth uses her aunt’s journey as well as talking to health care experts on the disease.  We spoke with Dr. Pasquale Fonzetti of Burke Rehabilitation Hospital in White Plains New York, Julie Reis a Physical Therapy educator, clinician and researcher and Eric Vidoni a PT and Ph.D. researcher at the University of Kansas Medical Center.

Our goal was to highlight that Physical Therapy is in an amazing position to positively affect those suffering from Alzheimer’s Disease. Research has shown that exercise, with intensity, slows the progression of the disease as well as the many many added health benefits that exercise contributes to the body.

The show is free to download, but if you are so moved by the story and would like to make a financial contribution we ask that you do it through the Alzheimer’s Association here.

Bios:

Elizabeth Kerrigan is a physical therapist at Burke Rehabilitation Hospital in White Plains New York.  She graduated from Marymount University’s Doctor of Physical Therapy program in 2016. She currently works in the outpatient physical therapy department at Burke where she sees patients with orthopedic and neurologic pathologies

Julie Ries is a physical therapist and professor of physical therapy at Marymount University in Arlington, Virginia. She has a special interest in physical therapy with older adults, particularly those with cognitive deficits such as Alzheimer’s disease, and her recent research has been in the area of outcome measures and balance interventions in this population.

Pasquale Fonzetti, M.D., Ph.D. is a board-certified neurologist and serves as the director of the Memory Evaluation and Treatment Service (METS) program at Burke. This program provides comprehensive outpatient assessment and treatment of memory disorders.

Through METS, Dr. Fonzetti works with patients to evaluate memory problems, providing diagnosis and treatment options for a wide-range of dementia disorders, including Alzheimer’s disease. He also works closely with the patient and their family, including holding a family conference after the evaluation, to discuss next steps.

In addition to his work at Burke, Dr. Fonzetti is a clinical assistant professor of neurology at Weill Cornell Medical College in New York. He has served as a research investigator for multiple clinical trials on dementia and stroke. Dr. Fonzetti is also the Chairman of Burke’s Institutional Review Board which oversees all clinical research within the hospital.

Academic Appointments
Assistant Professor of Neurology, Weill Cornell Medical College

Specialty Certifications
Board Certified in Neurology, American Board of Psychiatry and Neurology
Licensure, State of New York

Eric Vidoni is a physical therapist licensed in Kansas and Missouri and a research assistant professor in the Department of Neurology at the University of Kansas Medical Center. His research focus is using brain imaging and other techniques to quantify a change in brain health and ability to be independent as we age or develop Alzheimer’s disease.

After taking a faculty position in 2010, Eric was named the Assistant Director of the KU ADC. He is responsible for the annual pilot awards, promoting KU ADC resources to investigators interested in Alzheimer’s disease and ensuring that projects are completed successfully with the help of the center.

Episode Transcription:

Elizabeth Kerrigan: [00:00:00] My Aunt Mary is my mother’s older sister. She’s one of four siblings and is an extremely kind generous smart and altogether beautiful individual that has touched so many people in her life. Playing the role of a daughter sister wife mother. Aunt. And friend. She is a very intelligent woman who worked as an accountant and then got her masters in finance. But after having three children she decided to switch careers from working in finance to working in the school district by helping kids with special needs. But her career and the many other roles that she played in her life were suddenly cut short. In her mid to late 40s we first started noticing Aunt Mary’s memory issues when she was in her early 40s. At the time they weren’t significant enough to make us think that something was actually wrong, but eventually reached a point where no one could deny that what we were witnessing was not just a typical example of someone that was just getting older for the next several years. My aunt and uncle were in and out of doctor’s offices receiving countless tests in an attempt to figure out what was actually wrong. But every test kept coming back negative and it never seemed like we were getting any closer to an explanation for why a woman we loved was changing so much. After years of searching for an answer through the process of elimination doctors finally diagnosed her with early onset Alzheimer’s disease.

[00:01:37] At the young age of 51.

Jimmy McKay: [00:01:45] I’m your host physical therapist. Jimmy McKay That was Elizabeth Karega talking about her Aunt Mary. We want to take a look at how physical therapy and Alzheimer’s disease currently interact. We start with someone who’s very familiar with patients with Alzheimer’s disease and is often the first point of contact with patients and their families. Dr. Pasquale Fonzetti from Burke Rehabilitation Hospital in White Plains New York. Dr. Fonzetti heads there a highly regarded METS program which stands for memory evaluation and treatment services. We wanted to hear firsthand what patients are told upon diagnosis and what treatments they’re prescribed.

Jimmy McKay: [00:02:26] What’s a conversation with a patient and their family.

Dr. Pasquale Fonzetti: [00:02:29] Like when you deliver a diagnosis like that we are able to arrange what we call a family conference. We call in the patient and the caregivers the spouse or the daughter or the son. We all the family members that are involved in the care with the patient we provide an education about the disease progress what they can expect by the treatment. And that’s why we initiate the usually pharmacological or non pharmacological intervention. We provide education about how can patients be remain active with implementation of social recreational activity provide education about what could be an appropriate diet with these patients. They need to maintain a good level of physical and social activities to maintain cognitive levels.

Jimmy McKay: [00:03:22] When you bring those up the physical activity is there any specifications on that. Do you use any patient literature or brochure on exactly what that means. Because I think a lot of people who have a non medical background are not exercise background might not know how to take that and actually implement that.

Dr. Pasquale Fonzetti: [00:03:38] Yes that’s important for them to maintain a level of activity that is appropriate for the level of function. I encourage daily walking. Unfortunately some patients may have some gait dysfunction. I’m glad that you brought that up because here comes the multi disciplinary approach. Patients with gait dysfunctional gait apraxia. There are a risk of falls. So patients need to be instructed and educated how we can prevent those falls and some of them may need gait training. Physical Therapists provided very precious input about gait training. Are your patients referred directly to physical therapy as soon as the diagnosis is made. No. Patients we’d Alzheimer’s disease in the very early stages and out of their gait function are not affected. But as we progress with the disease these patients may have a gait dysfunction and that’s when I refer to a physical therapist.

Jimmy McKay: [00:04:43] We’ve seen some research which showed that intensive physical activity prescribed by a physical therapist can actually help to slow cognitive decline. We know that staying active is good especially for patients with dementia. What we’ve seen is the intensity is important. So is there anything that you guide your patients with Alzheimer’s in terms of how intense to make that activity.

Dr. Pasquale Fonzetti: [00:05:06] Well it has to be intensive that it’s appropriate for the patients ability of course. And there are several studies that showed a correlation between physical activity and cognitive function.

Elizabeth Kerrigan: [00:05:33] The main advice she was given by her doctors at the time was develop a day to day routine that she would constantly follow to help maintain some consistency and order in her life. It was suggested that she remain active and do things like word searches to help stimulate her brain. But that was the extent of it. For a while my Aunt would wake up and eat breakfast with my uncle and cousins who helped her get ready for the day before they all went to work which is when she would start her daily routine which consisted of walking on the treadmill for up to an hour in order to follow the doctor’s orders and remain active as well as doing daily puzzles and word searches. But after a year my cousins and uncle realized she would no longer be able to maintain this daily routine on her own. Within a year her condition had continued to progress to the point where she was no longer able to be alone at any time.

Jimmy McKay: [00:06:34] What we heard from Dr. Fonzetti said he was the same that Liz and Mary heard from her doctors. Start pharmacological treatment immediately remain active both physically and mentally and generally take care of yourself. But her question is, “Is that all we can do?” Is that all that science knows about what we can do to slow cognitive decline in these patients? To find out we talked with Julie Reis a professor in the physical therapy department at Marymount University. Julie is a PTA educator clinician as well as having conducted her own study on patients with Alzheimer’s disease.

Julie Reis: [00:07:14] The study happened in 2012/2013. So I was lucky enough to land a small grant from the our ARDRAF foundation. So it was from the Virginia Commonwealth University Center on Aging. So I was looking at balance interventions with individuals with Alzheimer’s disease. And so I thought well we can use the Berg and the tug and gait speed and assess those things and do intensive balance intervention and reassess and see if we’re able to make some changes and balance because these people with dementia they fall more than their age matched peers. So would you do? Teamed up with three adult day centers in the area and they helped me to recruit some awesome participants and we set up a protocol of a three month program twice a week interventions. So we did this in groups but because of the grant I was able to hire a physical therapist to run the sessions. And I was kind of the assistant physical therapist at all the sessions and then a group of student researchers. So we really had good oversight of all the participants of the program and so if anybody was ever trying something new that was kind of risky for the first time we were able to do one on one supervision while somebody else had two or three people that they were watching. So I really think it was the intensity, the fact that we were really challenging each person maximally and we were trying to keep everybody up on their feet the whole time. That was kind of the magical piece of this not the specific protocol that we followed.

Julie Reis: [00:08:49] I hired a couple of other physical therapists to do the pre and post testing so that I didn’t want to bias it because I knew I wanted them to get better. And so we had a couple of therapists did all the pretesting so they ran a berg test to test gait speed tests on everybody and then we went through the three month intervention and then we did post testing the same tests again. The individuals who who ran the post testing hadn’t seen the participants exercising. So while I may be thinking in the background “Oh I know this patient could do it I know they can do that. I know that I’ve seen them do it better.” That bias was not inflicted upon the post testing. And then after the program ended three months later we did a second post test to see if there were any immediate benefit. Did it sustain over a period of time? The bottom line is can we keep these individuals out of a residential care facility longer? Because we know that once somebody takes a fall and breaks a hip that’s like the beginning of the downward spiral that can be the end. And so if we can keep them up on their feet and save for a longer maybe they can stay home longer or maybe they can be more functional longer. So I’m proud to report that it did from a statistical standpoint it did impact balance and so we were able to see that the beur which was our primary outcome there was a statistical improvement in balanced performance.

[00:10:08] And even though their gains decreased after the program was withdrawn at the end of six months so they had three months of exercise intervention and then three months without the intervention. At the end of six months they still were better balanced than they were when they started while they were doing your program.

Jimmy McKay: [00:10:25] They were better. And then even when they stopped three months later they weren’t as good as when they were doing it, but they were better than when they started which was six months before that.

Julie Reis: [00:10:34] Right. Right. And here’s the crux of the whole thing was I don’t think it matters so much exactly what we did. I don’t want to bottle our intervention because I think it’s magical, but I think the characteristics of our intervention were magical and those were things like maximizing intensity for each individual participant through each and every session challenging each individual during each and every session trying to keep everybody up on their feet as much as possible during each and every session. I’m constantly telling students or therapists that I’m speaking with don’t offer up those rest breaks. If you offer up a rest break somebody is going to take it. If you physiologically see that somebody needs a rest break. Sure go ahead. But how often do we say “OK Mrs. Smith we just walked seven feet from the bed to the chair.

[00:11:23] You want to sit down?” She’s definitely going to say Yeah. Sit down. So that was one of the real important features of training that therapists and the students that I worked with that we are were on a mission here to really challenge these individuals and keep them on their feet. And we don’t offer up rest breaks. I think that’s one of the things in geriatrics in general that’s just missing is that intensity and that level of challenge you know you talk about a family trying to do what they’re told keep them active. Well what’s put them on a treadmill and they can’t stop until you stop the treadmill. That’s pretty great. But if they’re moseying along then it’s unlikely to really push them forward or push them in the right direction. And it is absolutely better than nothing but maybe we could be doing more.

Jimmy McKay: [00:12:12] So there’s some science right there. Yeah. You mentioned one of the big words which is intensity. Liz mentioned that her aunt was told to stay active. And I want to bring that up because I think that’s a point where physical therapy fits in perfectly. I mean we’re poised for that. So why aren’t we?

Julie Reis: [00:12:28] Oh I wish I knew. Somehow we’re missing the boat on this. We think about as a profession we don’t do the best job of marketing ourselves. Who should we be marketing ourselves to? Is it families Yes I think so. Is it physicians? Yeah I think so. I mean we have to really get in on the ground floor of the people that have some push with these individuals with dementia or Alzheimer’s disease. It’s all the primary care physicians it’s all the physicians who work in geriatrics. They don’t know of the benefits of physical therapy. And I think shame on us for not spreading the word about that. It’s our burden to show what we can do. We’re bad at tooting our own horns. We don’t do that well and it’s served us poorly. It’s a great question. I wish I had a great answer you know where to start now? But I think it is a matter of framing what we can do in a really clear and reasonable way and the science is there. I mean yeah we don’t know all the particulars about it and we have the evidence that shows certain types of exercise has neuroplastic effects not only on the healthy brain but on the pathological brain with dementia and we don’t want to sit around and wait for any more science to tell us what we need to use to PR ourselves. But we do have to figure out how to present ourselves we can present ourselves to each other because we know what we do.

[00:13:53] But we don’t do a really good job of presenting ourselves to the outside world to the general community to the medical community. Some of us who are passionate about this and kind of it’s just even something like what what you’re doing here is a great way to start to get the conversation rolling and spread the word about what we’re able to do. But how do we reach everybody else who doesn’t know. To learn more about it. Right. It’s a mean disease. And to watch it really take away who you are is a really difficult thing for for families to watch. You know one of the other things that I think I’m thinking back to Liz’s family getting that keep active push which is actually good for the medical team that told them to keep that woman active because that’s it is so important. But it just was a little too vague. So one of the things that I think about is you know this term of excess disability are individuals the individuals that we we see who have Alzheimer’s disease and other dementias over time they appear much more disabled than they should given their strength their range of motion. And this excess disability is really probably because we don’t let individuals do what they’re capable of doing and it’s strictly pragmatic too right. I mean you think about somebody with dementia needs to get from the house to the car. And if you’re on a schedule you’re going to take their arm and lead them and open the door for them and help them in and buckle them up and shut the door and so that becomes very rote and that becomes what families do.

Julie Reis: [00:15:25] And so over time that person loses the ability or never has to practice the ability of doing that very simple thing. And it could be something like carrying their dishes from the table to the dishwasher. It doesn’t have to be a big event. It is such a worthwhile activity to allow people who have cognitive deficit to do what they can do maximize their level of independence. But what if three times a week rather than hurrying the patient to the car and doing every component of it for them to say you know what I’m not in a big hurry today this time I’m not going to hold their arm I’m going to let them walk across the lawn. I’m going to let them experience that. I’m going to let them figure out how to open the car door even though it may not be immediate or they might need some guidance they might need me to mold their hand around the the door handle. But I think that we do our patients and our families do our patients a disservice when they are trying to us to be loving and efficient and avoid frustration.

Jimmy McKay: [00:16:22] We learned from Liz’s story that this disease never affects one person does it right that education is another position that physical therapists are really really great at.

Julie Reis: [00:16:31] Right. And then the other thing is you know these patients are a little bit different and we have to recognize what they need differently and that’s how we’re going to be really successful with them and see the changes. If we take a patient and we treat them exactly as we would treat their age matched peer who does not have cognitive impairment we’re not going to be successful. And I think maybe physical therapists who don’t know a lot about dementia who come in contact with these patients and they have a couple of interactions where they’re not successful then they get the wrong idea and they think well these patients can’t benefit from this. Those are that couple of the things I try to really leave therapists with the idea that we started with the intensity and that level of challenge the importance of that relationship that interpersonal relationship between the therapist and the client or the patient. And then having an idea of what motor learning capabilities these patients have how how they’re a little bit different than individuals who are cognitively intact it doesn’t mean they don’t have the capability to learn. They do. But it’s our burden to set it up so that they’re set up for success. I remember one more you taught in class. What’s up smile smile. There’s Dottie’s 10 tips for interactions it’s on the Alzheimer’s reading room web page. So powerful I share it with every every talk I give.

Julie Reis: [00:17:51] I share and Dottie is or was an individual with Alzheimer’s who shared 10 tips for successful interaction and at the end of at least six of them she identifies the power and the importance of a smile. Just smiling. Yeah yeah. How hard is that. It might not help but it’s definitely not going to hurt.

[00:18:19] Aunt Mary now 59 years old and over the past eight years the disease has continued to progress to the point where she can no longer speak walk or care for herself. Three years ago our family was faced with the difficult decision of putting her in a nursing home because we were no longer able to provide for her with the amount of care she required day to day. She’s been moved to the most advanced floor in the facility and requires help with absolutely everything. Dressing bathing eating getting into and out of bed. Moving from one place to another taking her medication. If someone didn’t go into her room in the morning and physically help her out of bed she would remain in bed for the entire day. Luckily for them my aunt remains in one place until she is physically moved to another so they don’t have to worry about chasing after her like they do with most of the other residents that are just as confused and mobile. But at the same time this has resulted with her sitting constantly all day every day and as a result her muscles have completely deteriorated and she has developed contractures.

Jimmy McKay: [00:19:30] Now we realize that Julie’s study is small but it gives us great hope for what exercise can provide for this population. But what if we could go larger? So we talked with Eric Vidoni from the University of Kansas Medical Center. Eric’s a great combination of being a physical therapist as well as a Ph.D. researcher. He’s currently the assistant director of the Alzheimer’s Disease Center at the University of Kansas overseeing the many projects they have that are focused specifically on Alzheimer’s disease.

Jimmy McKay: [00:20:05] I guess my big question is why we brought you in. Where are we in the research with Alzheimer’s disease in terms of something a physical therapist can do which is exercise? Where does it stand?

Eric Vidoni: [00:20:16] What does the research tell us that exercise does? PT’s are instrumental to the disease, and one of the things that we kind of misconceptions that we combat is that it’s just a disease of memory which is actually not the case so we see over the course of time people with Alzheimer’s change the way they walk the way they even just get out of a chair. Those are obvious easy low lying fruit for PT’s but we actually see that the disease probably changes the whole system the whole body. So people with Alzheimer’s lose muscle faster they kind of waste away they lose bone actually. Men with Alzheimer’s lose a lot of bone and they end up looking osteoporotic for much like older women. And so the base thing that we can do is PT’s is just address the physical decline through exercise. I think that we’re too we’re too cautious. How easy it is to dismiss an elder and say oh they’re just going to have a walker. And I think that happens even worse and more so with people with dementia. We still recognize that the body and the brain are going to respond to a challenge. So if you challenge that body in the brain through the various ways that Peter has not had a challenge then there’s going to be some response. And we have to understand that that’s measured and it’s going to be different for every patient and different for different populations.

Jimmy McKay: [00:21:24] But we can challenge people since you mentioned brain and you do a lot of brain imaging there at the University of Kansas. What does the brain imaging say that exercise does in this population. What does it do. Neural level what do we know?

Eric Vidoni: [00:21:38] A couple of the things that we know it changes brain size. We think that’s probably associated with a little bit of neurogenesis certainly supporting structures increased vasculature of the brain. That’s one thing we also see that the brain seems to work better together in terms of communication between the different regions of the brain. The key that we think especially here at KU One of the things that we really think is important is that you have to move the needle on fitness or strength or whatever it is your interventions targeting. You have to move the needle. What do you mean move the needles. Is it in terms of intensity? Yes. So as PT we want to modify or to create this exercise plan for an individual that’s appropriate for them. That increases their Veoh to Max for example and actually has a measurable increase in their aerobic fitness.

Jimmy McKay: [00:22:21] This just screams a location where physical therapists are poised to help out. We’re seeing that there’s a potential for exercise at an intensity to help prevent or at least delay. Would I be correct in saying delay the onset of symptoms?

Eric Vidoni: [00:22:34] 100 percent. There is no better profession in my mind to be providing guidance for exercise that we think helps. Just as you said delay onset of symptoms. It’s only PT’s who really have the full breadth of understanding of each individual and any comorbidities they may or may not have How to maximally boost fitness or strength. It’s really PT’s who should be doing this.

Jimmy McKay: [00:22:58] So here’s the million dollar question why aren’t we doing it?

[00:23:02] Oh man that’s a hard question. I think sometimes PT’s focus on what we can do with our hands and maybe we don’t value enough truly exercise prescription and how valuable we are in that if we start thinking of ourselves as individuals who can really provide great exercise prescription. Considering all the different facets of an individual and how unique we are in that position maybe we’ll start to value that in ourselves. But that seems to me to be the answer if we started valuing exercise and our ability to prescribe exercise that will go a long way to starting that conversation.

Jimmy McKay: [00:23:34] How many different systems of the body in a patient with Alzheimer’s or dementia do you think exercise could positively affect every system that affects an individual without dementia.

Eric Vidoni: [00:23:45] But there was a great analysis about a decade ago that showed a meaningful change in cardiovascular fitness musculoskeletal strength flexibility maintaining weight instead of atrophying maintaining function supporting cognition improving sleep and helping maintain and moderate some of the behavioral changes anxiety and depression. All of those things benefit from exercise and the general population and probably even more so when you look at that clinical population. like AD.

Elizabeth Kerrigan: [00:24:26] Since being given this diagnosis we were not given much advice on how to be more proactive or what to do next than that the rest of her life was just waiting for the inevitable. She was told to exercise daily in order to help with her cognition. But it was never regulated by any trained professional and she was expected to just maintain this daily routine on her own. Looking back now I wish she had been in front of a physical therapist somebody who’s trained and is capable of regulating these types of routines remaining active is great. And that’s something that she did every day for at least an hour by walking on the treadmill in her house. But there was no monitoring the amount of intensity that she was doing. And it’s the lack of intensities where we fall short.

Jimmy McKay: [00:25:21] There is more that can be done for the patients and families who live with Alzheimer’s disease on a daily basis. What can the profession of physical therapy contribute. Well if you’ve been inspired by Aunt Mary story you can learn more about what you can do and then go do it. Find more information. Move forward PT dot com search Alzheimer’s. There you can find examples for signs and symptoms diagnosis and treatment examples as well as links to the most current research. The producers of this episode would suggest taking an APTA accredited continuing education course on the treatment of patients with Alzheimer’s disease. And always keep in mind, Don’t offer up those rest breaks! Resources in classes specifically for physical therapists and physical therapists assistants are available through the Alzheimer’s Association at ALZ.org. Finally if you’re so moved to make a monetary donation we would love for you to do it online to the Alzheimer’s Association at ALZ dot org in honor of Aunt Mary. Our most sincere thanks to everyone who’s been a part of creating this episode. Julie Reis from Marymount University. Eric Vidoni from the University of Kansas. Dr. Pasquale Fonzetti from Burke Rehabilitation Hospital. Skye Donovan from Marymount University. Jason Bellamy from the American Physical Therapy Association. And finally a thank you to Elizabeth Kerrigan for and Mary and their family for allowing us to tell her story.

Jimmy McKay: [00:26:56] Want to thank our sponsors Aureus medical staffing and you can find out more information about how you can get a job anywhere in the U.S. doing the thing you want to do which is this physical therapy thing with various AUREUS Medical. And one common misconception that I want to get under way right away. It doesn’t cost you anything. Yeah. They’re not trying to get money out of you and then find you a job. They’re just sitting there with a bunch of jobs and you’re sitting there wanting to go to different places and travel around and be a peaty match made in heaven. Aureus is the leader. They’ll get it done for you. A U R E U S Medical dot com. Paid travel and housing benefits positions in all of the 50 states a variety of different settings plus Con Ed money too it’s a big question in travel physical therapy. Great way to see the country and you can do it as a new grad a seasoned professional A U R E US medical dot com that’s Aureus these guys have supported the show from the beginning. So we want to make sure you support them and by the way they’re going to support you by getting you a job doing some PT

Links:

Alzheimer’s Disease and links to current research from the APTA

Continuing education for health care providers from the Alzheimer’s Association 

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