Moderator Rachel Breidster: Hello and welcome to Public Health Live! I'm Rachel Breidster and I'll be your
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today's activity. As for today's program we will be taking your questions throughout hour by phone at 1-518-402-
0330, or via e-mail at [email protected] Today’s program is entitled Alzheimer’s disease and the Importance
of Accurate Death Reporting. And our guest today is Dr. Jessica Zwerling, the director of Montefiore Hudson
Valley Center of Excellence for Alzheimer’s Disease or (CEAD). Thank you for joining us.
Moderator: So good morning, Dr. Zwerling, thank you for joining us today.
Dr. Jessica Zwerling: Thank you Rachel for having me in the studio.
Moderator: So, to get us started with this show this morning, would you start by reviewing the objectives for
today's learning program for our audience?
Dr. Jessica Zwerling: Sure. Today we are going to talk about the importance of early detection and early
diagnosis of Alzheimer's disease in the context of improving disease management and appropriate referrals. In
addition we are going to talk about the importance of the multidisciplinary approach to
Alzheimer's disease and its related dementias. And also the public health crisis of the disease, including the
diagnosis and treatment. Furthermore, we are going to go over the importance of the accuracy of recording when it
comes to death certificates in the presence of Alzheimer's disease.
Moderator: Excellent, thank you. It sounds like we have a lot to cover today. Let's start by talking about what is
the landscape of Alzheimer's disease? And who is really impacted by Alzheimer's as well as other types of
Dr. Jessica Zwerling: Currently right now there are 5.7 million Americans who have Alzheimer's disease. The
oldest cohort, those patients 85 and older represents about a third of those patients. That's a cohort that's
understudied. This actually doesn't include only Alzheimer's disease. We haven’t included a lot of types of
dementia. Many people are not even aware that they have a diagnosis. There is question of what is normal when it
comes to aging. Is it normal to forget the name of the actor in a movie and then it comes to you in the middle of the
night? Those are common things associated with aging. We have to have patience for traffic on the brain forgetting
an answer and then eventually coming to it. Many patients may be aware of what is normal versus abnormal,
which is part of the public awareness campaign.
Moderator: Let's talk about the impact this disease and how significant it is. And if you can give us a perspective
on the size of this disease.
Dr. Jessica Zwerling: So in 2018, someone in the United States will develop Alzheimer's disease every 65
seconds. By 2050 it will be half, every 33 seconds. The time we discussed our first point someone will be
developing Alzheimer's disease. New case of Alzheimer's disease given the rise of baby boomers is increasing
actually so people are living longer. More awareness campaigns about what Alzheimer's disease is, will cause an
increase in the number of patients diagnosed with Alzheimer's disease.
October 2018 PHL Alz Dis & Death Cert Page 2
Moderator: So as Alzheimer's disease progresses, I assume then also the deaths related to the disease are
important to consider and track?
Dr. Jessica Zwerling: Absolutely. Alzheimer's disease is currently the sixth leading cause of death. The fifth
leading cause of death in those that are over 65. Again very underreported. Heart disease, cancer, stroke, those
affected by accidents are our leading causes of death. But one in three seniors does die of Alzheimer's disease. In
fact patients die from Alzheimer's disease more than breast cancer and prostate disease combined. There is no
disease modifying therapy for Alzheimer’s disease we don’t have any defined treatment. We are looking to define
prevention strategies. And a lot of this data is underrepresented.
Moderator: So talk to me about why it is important to discuss Alzheimer’s disease as a cause of death. Beyond
just the scope of the disease, but one of the topic we are talking about is death reporting, Why is that important?
Dr. Jessica Zwerling: It is important because as you increase and record in death certificates, it directs public
funding. It increases the awareness that Alzheimer’s disease is contributing directly to the cause of death allows us
to direct public health campaigns, research funding. And so it’s very underreported. The number of deaths from
Alzheimer’s disease actually recorded would be double. If I use my pom poms if you thought about accuracy of
death reporting and educational campaigns for those that are recording on death certificates, the number is
extremely underrepresented. We likely are a higher cause of death than heart disease and stroke like I spoke about
Moderator: So if deaths from Alzheimer’s disease are underreported and we already know it is a fairly high cause
of death and they already are underreported how can we accurately impact or evaluate the impact of the disease.
Dr. Jessica Zwerling: Public awareness starts with disease surveillance. It starts by defining what the problem is.
What is Alzheimer’s disease? What are the warning signs of Alzheimer’s disease? Targeting multidisciplinary
educational campaigns, educating the lay person, educating primary care physician, allied health professionals. So
we actually define what the actual problem is. What is Alzheimer’s disease? Then we develop prevention strategies
for that. So we can define health care programming around that, we can guide policy, and funding and we can
really target Alzheimer’s disease from a multidisciplinary perspective.
Moderator: So let's talk about Alzheimer’s seize and the process of surveillance. Is there anything unique about
surveillance when it comes to this particular disease?
Dr. Jessica Zwerling: So in other public health campaigns we have reportable disease. Everybody knows about
the syphilis registry as being a reportable disease. Alzheimer's disease, unlike other diseases are not reportable.
There are very few defined registries. So prevalence data really relies on that really relies upon recording and the
vital statistics registry. Also, mortality data offers one way of tracking Alzheimer’s disease in various
communities. The Alzheimer’s disease that represents in rural communities may pose different health concerns and
health problems and navigation through health research different than in big city areas. Gaining an understanding
of that through the vital registries is crucial in order to develop effective public health campaigns.
Moderator: Sure. Recognizing that things may look different whether you are in the rural communities or big
cities, things of that nature. Let's talk about who is impacted by Alzheimer’s disease and dementia and what those
folks will be like.
Dr. Jessica Zwerling: It’s very important to define the many faces of dementia. Dementia can effect presidentsRonald
Reagan was the president of the United States, he developed Alzheimer’s disease. There was questions on
whether or not he had prodromal symptoms of mild cognitive impairment. Ultimately he died of pneumonia with
the underlying cause of Alzheimer’s disease. We have Margaret Thatcher. Margaret Thatcher was a wonderful
civil leader. She actually had multiple strokes. It was kept quiet. There was a stigma against the cause of dementia,
which really in a public health figure was upsetting to many people. Muhammad Ali was a prominent boxer who
developed Parkinson’s disease and ultimately failed his health and failed and died from completion with
Parkinson’s disease. Rosa Parks, the famous civil rights leader, she actually developed dementia. In her frail older
age she had caregivers who took advantage. It represents the vulnerability of our population. Once we lose our
October 2018 PHL Alz Dis & Death Cert Page 3
capacity to make decisions, our capacity to navigate and understand our environment we become vulnerable. The
other two people, on the bottom right is one of my colleague's father. He got into multiple accidents driving. He
had Alzheimer’s disease. The decision to take away the keys to the car was done by her because he was dangerous
on the road. He no longer had the capacity to dive. And finally, on the top right is my grandmother. My
grandmother was taken care of my by uncle. He cared for her for many, many years. He actually died of a heart
attack before she did. The stress of care giving is real.
Moderator: I think the summary first of all I think paints a really important picture of looking at it is not all little
old ladies in wheelchairs, which I think is sometimes what people think about. Really it impacts a diverse group of
people. But beyond that, thinking about the impact on the caregivers. Can you talk a little bit about beyond those
faces you just looked at, the caregivers and how they are impacted?
Dr. Jessica Zwerling: The central focus of Alzheimer’s is not only on the patient but the caregiver. The caregiver
is burning the candle at both ends. They are at increased susceptibility to diseases, heart attacks, flu, kidney
disease, Alzheimer’s disease and dying themselves. It is important in an age where we don’t have disease
modifying therapy to protect our caregivers to understand not only -- when we first started in and out medicine I
would examine the patient and then there would be the caregiver and I really wanted to attend to the caregiver as
well. It takes additional time to focus on the caregiver and patient dyad, but extremely important when treating
patients with Alzheimer’s disease. Currently right now in 2017, there were 18.4 billion hours of informal
assistance that accounts for $232 billion care, care that the caregiver is providing.
Moderator: Wow, and that number is likely underreported as well, I would imagine.
Dr. Jessica Zwerling: Absolutely.
Moderator: Yeah. How significant. So considering that, we all know that health care systems for anyone can be
overwhelming to manage. So let's talk about complications that are specific for people who are caring for those
folks who are living with Alzheimer’s or other types of dementias.
Dr. Jessica Zwerling: Our health system sometimes poses us as being fragmented, like we are Mr. Potatohead. I
have an eye problem I have to go to the ophthalmologist, I have stomach concerns well you have to go to the
gastroenterologist. So care can be very fragmented. We have wonderful programs funded at the state and federal
level to try to defragment the health system, to coordinate care and really poise as centers of excellence across
New York State to really help guide the primary care physicians and specialists to work together and really try to
defragment the care that’s often present, in older individuals, especially those with dementia.
Moderator: Sure. So let's shift gear as little bit and talk to me about what are some of the risk factors for
Alzheimer’s disease. Because if we don't at this point have any sort of cure for the disease or regimen to modify
the disease once it’s established, how can we prevent it? Can we prevent it? Is there anything we can do?
Dr. Jessica Zwerling: So there are things we can modify. And the risk factors for Alzheimer’s disease- I can't do
anything about their age, gender assigned from birth. There are late onset Alzheimer’s disease genes that make you
more vulnerable to having Alzheimer’s disease. And I certainly can't pick people's relatives, so I can’t do anything
about family history. But what can we do? We can manage cholesterol, manage high homocysteine levels. We can
help and launch diabetes campaigns to help because in essence, Alzheimer’s disease is an inflammatory state just
like a heart attack. If you manage vascular risk factors you can help some of the side effects that come along with
the disease. We can encourage consistent helmet use and protection. There is an association that we have with
chronic traumatic encephalopathy and brain injury so consistent helmet use is important. And we can manage
stress. There is a biological phenomenon related to stress. Stress actually increases inflammatory markers. You can
have an interaction between the environment and stress actually can make memory look worse.
Moderator: Interesting. I would imagine that those are things that probably people in your line of work are aware
of but folks like myself or out in the daily community might not have an awareness of some of those risk factors
that they could be actively trying to avoid.
Dr. Jessica Zwerling: Exactly. There’s a lot of control we do have despite not having modifying therapy.
October 2018 PHL Alz Dis & Death Cert Page 4
Moderator: Since so many patients receive care through their primary care physicians, how does this impact
overall care for dementia?
Dr. Jessica Zwerling: So dementia care is challenging. If you think about the primary care physician, they have
about a 15 minute visit. So it can be daunting. There are many geriatric symptoms frailty, problems with
polypharmacy, behavioral issues. Concomitant depression is high. Reviewing safety in the home. Talking about
chronic illnesses of diabetes and high blood pressure. And kind of looking to the fact that you want to make sure
there is no repetitive hospitalization, repetitive hospitalizations for urinary tract infections, falls or pneumonia,
malnutrition or neglect. So the care for an older adult becomes very challenging and can be daunting. But there are
defined risk syndromes we can begin to understand to properly care for an older adult.
Moderator: Sure. So let's talk about care is usually delivered for someone who has dementia.
Dr. Jessica Zwerling: Currently right now a traditional cognitive complaints. If you had a memory complaint you
may be told to you a neurologist. If you had trouble walking and navigating you may see a rehabilitation specialist
or a physiatrist. If you’ve had a lot of weight loss you may actually see a geriatric specialist. There is fragmented
care so you end up piecemealing dementia care when you really need to look at comprehensive care with
coordination among care specialists and the primary care physician. They may have falls or mood issues presenting
to a psychiatrist. And this may be actually piecemeal.
Moderator: Looking at this from the perfective of a family member or a caregiver, and they are considering how
to help care for this person, whether or not something might be going on, how would you know what stage a
family member was in? How would you be able to identify some of what's going on?
Dr. Jessica Zwerling: There is a functional assessment scale. I think it is a validated scale for patients with
Alzheimer’s disease. And it actually helps me to talk to patients, helps me to guide expectations and prognosis. A
patient, for instance, who has mild dementia may have difficulty performing normal tasks, managing finances, but
what it does is helps guide patients. For instance, someone with moderately severe dementia may have difficulty
putting on clothing. They may have difficulty or need prompting to bathe, prompting with toileting. They may
have some incontinence. It allows the family to prepare what help needs to be in the home. Is there a home health
aide. What do I need? Is there an increased risk of infection with incontinence? So it allows us again in an age
where there is no modifying therapy to prepare the caregiver and that family. And to understand the community
resources that could be available to help them though the process.
Moderator: Sure, thank you. Can you give me an example of what a patient may look like when they present to
primary care physician with memory issues that maybe could go unrecognized?
Dr. Jessica Zwerling: Absolutely. This scenario reflects what occurs in the primary care office and a common
scenario that we see. For instance we can call our patient Mrs. MR. She is a 75 year old women has diabetes and
progressive kidney disease and she came into her primary care physician for a routine follow up. He wanted to
discuss the need for dialysis because he looked at her renal dysfunction and it started to progress. Previously she
was diagnosed with diabetes and her 3-month sugars were well controlled and now there was poorer control.
Usually we ask the patient to bring a brown bag of medicine so we can verify medication at each visit including
over-the-counter medications. We ask for a list of their glucose readings at primary care physicians and she had
forgotten that. Diligently the primary care physician referred the patient to a nephrologist, kidney specialist and he
increased her diabetic regimen. Furthermore, she missed her appointment with nephrology. And then he noted her
going to the ER she was admitted to the hospital for confusing. She had high sodium, high glucose and she had a
urinary tract infection. She was appropriately treated in the ER and came home. The next month she went to the
emergency room again. She had low blood sugar. She did not have a fall at that time. Now she comes back to the
primary physician's office and can't explain why she missed the nephrology appointment. She thought maybe she
didn't want to go on dialysis right now but wasn't sure, again the brown bag of medication wasn't there, the list of
the glucose readings wasn’t there. The health guidelines wasn't there. And he made a new nephrology
appointment. So what’s happening to this patient is completely daunting. She was flagged by the primary care
physician and referred to us because she had cognitive complaints and cognitive issues. It wasn't because she had
what we call retinopathy, and she couldn't see her insulin syringe, it wasn't because she had neuropathy where
wasn't able to feel the syringe and deliver her medications. It was because she had a bona fide memory problem
October 2018 PHL Alz Dis & Death Cert Page 5
that wasn’t discovered at that time. We need to stop the madness. At that point she was referred to our Center of
Excellence and we were able to loop in a caregiver, to provide a healthcare proxy while the patient had capacity,
and then provide diabetes education not just to the patient but also to the healthcare giver who was now involved.
Moderator: I am sure that story sounds familiar to a lot of people at least on some level. I wonder, are most older
adults, or even their caregivers, but are the adults themselves aware of their memory troubles?
Dr. Jessica Zwerling: Most people actually aren't aware of their memory troubles. Some people think “Oh this is
normal aging” “Mom's forgetful” And there is limited time in the primary care physician's office to understand.
When we first launched our electronic medical record and our review system, there was no question about
memory, how are we doing? There are a lot of clinical barriers to screening. Screening is extremely important to
identify patients that are at risk. It is often thought well the screening will take a lot of time. Actually, there are
wonderful short validated tools. It is thought that over almost three quarters of patients may not be identified as
having MCI, mild cognitive impairment or complaints about the memory or dementia. So those diseases remain
Moderator: Wow. So you mentioned screening tools. Do medical providers routinely screen for memory
Dr. Jessica Zwerling: The annual wellness, which was part of the provision for the affordable care act
recommends screenings. There’s annual preventative health screening. Screening with cognitive measures is
important. There was a committee that was formed that put forth the recommendation of quick cognitive tools that
were available for primary care, validated in a primary care setting. So there are screening for cognitive
impairment available. It is available for the annual wellness visit. But how to operationalize the annul wellness
visit varies from institution. But there are quick and wonderful tools that can be done in the primary care setting.
Moderator: I think about my own primary care physician. You mentioned earlier, primary care physicians tend to
be about 15 minutes. When you consider that and all of the things they are trying to accomplish how can they
really make the time to do these kinds of thinking tests or memory screening tests?
Dr. Jessica Zwerling: It takes less than five minutes to perform. So there are quick tools that had been
administered. It doesn't have to be administered by the physician. These tools can be administered by allied health
professionals that can screen patients. A lot of the tools are free of educational bias, cultural bias. There are three
recommended screening tools that we use. One is the MiniCog, which I can review. Another is the Memory
Impairment Screen and the GPCOG. If you were addressing hypertension or diabetes -- it is extremely important
as you saw in the case of Mrs. MR before, to address the cognitive complaints before because we are not going to
change and modify chronic disease and provide proper disease management and control if we are not getting at the
underlying problem of cognitive impairment.
Moderator: Sure. If you would take a minute to talk about some of the screening tools. You mentioned the
MiniCog. That would be helpful.
Dr. Jessica Zwerling: Absolutely. I will not administer it to you. But this is a quick screening tool. It takes about
three minutes to administer. You’re going to ask the patient to remember three words, apple, penny, and table.
Then you are going to ask them to draw a clock. They are going to fill the numbers in the clock and you are going
to give them a time. That's a distractor test. Then you ask them to remember the three items. And if you look,
sometimes the clocks can reveal underlying issues in the brain. A patient who squeezes all the numbers on the right
side of the clock, when you follow appropriate screening guidelines for cognitive impairment and ask to do
imaging of the brain, it was actually found that patient had an underlying tumor on other side of the brain and
that’s why the visual spatial skills were off. So it is a quick tool but reveals lots of information. It has a lot of
sensitivity and specificity which is what we look for in good screening tools.
Moderator: Excellent. I feel compelled to repeat back to you, apple, penny, and table.
Dr. Jessica Zwerling: I will ask you at the end of the segment!
October 2018 PHL Alz Dis & Death Cert Page 6
Moderator: Fair enough! So we hear about different instruments that are being integrated into health systems for
these memory screenings. What does your institution use?
Dr. Jessica Zwerling: So we use a modification of the memory impairment screen. The picture based memory
impairment screen is a verbal test, a picture version test of memory. It is very culturally sensitive. We validated it
and the publication is in JAGS. It is easy to measure. It is a valid measure for patients that maybe have problems
with literacy. This is able to be administered. What you do is ask patients to remember four pictures. You ask
them, they will name the eye, the banana, the candle, and the airplane. Then you will ask them to encode. You will
ask them which one is the body part. Then you will do a distractor again. Are they functioning in their home? Able
to toilet? To bathe, to travel out of the neighborhood, handle their finances. Gain more information about their
function. And then you are going to ask them to recall those items again. You have two points for each picture.
And a score of six, seven, or eight is quite normal. When you score six or less, that's a flag that it may be a concern
for cognitive issues. We don't just administer this. A lot of times it comes up, are we going to issue this to all
adults? You want to have a cognitive concern, you want to have patients complain or a member of the family
worried, or a practitioner that there may be a cognitive concern. We don't want to administer it to everyone unless
it is in the complaints or in the annual wellness visit.
Moderator: Sure, that makes sense. Let's turn back to who this disease impacts. Can you talk about whether or not
there are racial disparities in Alzheimer’s disease?
Dr. Jessica Zwerling: Absolutely. Not only are there racial disparities, but there are also age disparities. In our
oldest cohort, which we say 85 and older, there is less studies about what disease is there and it really does impact
them. In our older African-Americans and Hispanics, they are more likely to experience Alzheimer's disease more
than Caucasians. African-Americans may be twice as likely. Asian Americans, in one cohort study, were
determined to have a lower risk. There are racial disparities when it comes to the disease. In addition, even within
the Hispanic culture, we can have to account for different health and life-style factors. There are chronic conditions
associated with an increased risk, some of them were the risk factors that we spoke about for Alzheimer’s disease.
The Alzheimer’s disease can be more prevalent in African-Americans. There is also an elevated risk for what we
call Metabolic Syndrome, those with diabetes, high blood pressure, high cholesterol, those are more prevalent in
that cohort. One major factor is we want to make sure that Hispanic and Latino communities are not considered
homogeneous. Caribbean Americans are different from other Americans. Dominican different from Puerto Ricco.
We have to understand each subtype within the Hispanic community and not treat them as one homogeneous
Moderator: Absolutely. And are there other differences worth noting?
Dr. Jessica Zwerling: Some of these approaches. There are barriers to understanding and recognition. A lot of
Hispanic families and other communities have intergenerational. I always say if you are over and having a meal at
your family member's house and the meal tastes different it may be because they are forgetting an ingredient.
Normal tasks that they used to do, and they were a wonderful cook may be challenging now because there may be
cognitive concern. If you don't like see how mom cooks question how did she do her shopping, how is she
functioning and is there a memory concern rather than just a bad meal.
Moderator: Let's shift gears and talk about care seeking. What are some signs you would say that someone should
see a specialist to either seek care for themselves or someone else?
Dr. Jessica Zwerling: That’s a very good question. One of the things we want to think about is red flags. We
know that Alzheimer’s disease can't be taken care of by all specialists. Primary physicians will be taking care of
what we call garden variety Alzheimer’s disease. Red flags for cognitive concerns are for those who may have
frequent hospitalizations, they may have frequent ER visits just like the patient that we spoke about before. They
may be admitted for hypoglycemia or falls because they have difficulty understanding the regimen or the care plan
that the doctor provided. So diseases that were normally controlled and now that there are an increase in poorer
control that may be due to noncompliance and non-adherence to therapy that may be a red flag that there are
cognitive concerns if there are loss to follow-up. One thing I want to bring up is nutrition. If there is weight loss
and you’ve worked up that there is no other organic issue for the weight loss. It may be because there is a proxy or
a swallowing difficulty due to an underlying disorder or they are forgetting how to eat. Meals on wheels is a
October 2018 PHL Alz Dis & Death Cert Page 7
wonderful program for food delivery, but we want to open the fridge to make sure those meals are actually made
and that they are eating it.
Moderator: That’s really interesting information and not something I necessarily would not have thought of. Let's
talk about what happens when a primary provider gets a positive screen indicating that this person has an
impairment. What would the provider do next?
Dr. Jessica Zwerling: It’s a good question and when we are asking the providers in the context of the annual
wellness visit to do more screening and document more, we want to have a referral pathway of what they should
do next. What we’ve done is that the best practices are after you have done a cognitive screen and it is positive and
you have also done a depression screen, which can also be a mimicker of problems with cognition, you want to
look at vision and hearing and making sure that's not a factor when you have a cognitive complaint. You want to
do a fall screen. In our area we have a high instance of substance abuse. You also want to screen for substance
abuse. So once you get a positive flag, there are recommended guidelines. The American academy of neurology
recommends we screen with vitamin levels like B12, thyroid hormones and we get an imaging study. I often get
the question does my patient need to go for an MRI? An MRI is expensive. As a neurologist I love the MRI. In the
MRI we get details about the white matter of the brain but it can be a cat scan without contrast. We are also
looking for other things that can cause memory problems- stroke, tumors, something called normal pressure
hydrocephalus where the ventricles are very big and people may have difficulty walking and have memory
problem. And you want to look for additional risk factors. We screen for sleep apnea. That's often a concomitant
risk factor for cognitive impairment. So this path is reviewed with our primary care physician and provides an
outlet of what to do when there is a positive screen.
Moderator: And do all patients that have been identified with Alzheimer’s or a related dementia, does everyone
see a neurologist?
Dr. Jessica Zwerling: They don't have to see a neurologist, there are certain red flags.
Dr. Jessica Zwerling: So when we speak about the fast staging and prognosis- that is over many years. If a patient
goes from normal to abnormal within one year, we categorize that as rapidly progressive dementia. And those
patients should see a specialist like a neurologist. If they have abnormal movement, many falls. That may represent
some of our related disorders not Alzheimer’s disease that may represent some of the progressive supranuclear
palsy some of the parkinsonian syndromes. Those warrant a visit with a neurologist. In addition, if they had more
progressive weight loss or they are high utilizers or you are not sure if this is a lifelong disorder what that person's
baseline functioning is, that would recommend a referral to a neurologist. We would love to see as many patients
but realistically within our health systems we need to work well with our preliminary care providers.
Moderator: Sure. So if I am a medical care provider and I noticed some of the red flags that you described what
resources are available to me?
Dr. Jessica Zwerling: So currently we have a center of excellence for Alzheimer's disease the department of
health is funding. There are ten centers within New York State. Very patient and caregiver centric. The model may
differ, but our model focuses on the patient and the caregiver amongst a multidisciplinary evaluation. So we have a
neurologist on site. We have a geriatrician on site addressing some of those frailty and high risk syndromes that we
spoke about. A polypharmacy, that challenging patients of polypharmacy, weight loss, depression. We have social
work on board. We have psychiatry. But that's a multidisciplinary approach. What we do is work with care plans
with the primary care provider and provide a snapshot and look at strengths and weaknesses of each patient. And
what we are really doing as centers of excellence is helping to guide primary care physicians. We’re breaking
down the barriers between the community based organizations and the hospital. As a provider I may provide great
medical care but if I am not aware of the resources to share with that caregiver and that patient around us, I am not
providing real comprehensive care. So it really forces us to know what's going on in the community and there are
several disciplines of us working together to try to provide that more comprehensive plan.
October 2018 PHL Alz Dis & Death Cert Page 8
Moderator: That’s excellent. So what important to include in an assessment for an older adult who may be
suspected of having some type of dementia?
Dr. Jessica Zwerling: So the geriatric assessment is basically taking a very good history. Looking for risk factors,
addressing syndromes weight loss, unstable gait, falls, is there polypharmacy on board, looking at sleep patterns. If
patients are not sleeping well, I know if you had a bad night's sleep you are not functioning as well. But if this is a
pattern over time, to review sleep hygiene as well to look at any kind of behavioral symptoms. Are there
hallucinations, is there paranoia that’s going on? Sometimes there is a stigma against that. So often pulling the
caregiver separately to get that interview to understand what’s going on in the home is important. To do medical
reconciliation at each visit. We want to look at over the counter therapy and herbal therapies to see if that's causing
any difficulty there. And then we do a physical examination. Again, getting as much collaborative information as
we can from the caregiver that has been with the patient. And ‘caregiver’ can be loosely defined, it doesn't have to
be the person living in the home. We often get a lot of resourceful information from family members that are
outside the home. I encourage with your primary care doctor if you can't attend appointments with your loved ones
to provide that information ahead of time.
Moderator: Thank you. That's all very helpful. So we had an opportunity to meet with members of the
interdisciplinary team at Montefiore Health Systems Center of Excellence for Alzheimer's disease about the
diagnostic process. Let's take a look.
Dr. Rubina Malik: At the Center for the Aging Brain, we do a multidisciplinary assessment that includes
geriatric, neuropsychology, neurology, and the goal is to communicate with the primary care doctor so
that they have not only an assessment but a care plan.
Nurse A: Today we are going to talk about Ms. MR. She is coming in for an assessment at the center. She
had multiple comorbidities. Her physical examine was relatively benign she had mild neuropathy
associated with her diabetes. And in terms of her medication, she had already been started on medication
for memory issues.
Dr. Rubina Malik: Dementia remains a clinical diagnosis. The gold standard happens to be a brain
biopsy which we don't perform in everyone. Clinically to make a diagnosis for dementia, we really rely on
the history and the physical examine.
Nurse B: Just to give you a little bit of background, she has ten years of education in Puerto Rico. She is
bilingual, but she did say Spanish the language she thinks this and she talks to her family in. During the
evaluation she was anxious, she was sad, she was tearful throughout, she would just starting crying out of
the blue. We couldn’t really tell if she understood what was going on in terms of her memory versus some
other things. The cognitive tests completed in Spanish demonstrated mild impairment on the mental status
exam and then difficulty with learning, with recall, with recognition.
Dr. Weiss: Cultural factors play a big role in influencing cognition. I think the second that someone
comes in and the primary physician thinks there is cognitive impairment the family complaints about
cognitive impairment. Or the patient comes in with cognitive concerns, the physician should be screening
for cognitive impairment using the tools out there while considering some of the cultural and educational
limitations that are there.
Dr. Jessica Zwerling: There haven't been falls reported in the last three months. Her MRI of the brain
did reveal that the ventricles are large. I am not concerned about normal pressure hydrocephalus or
communicating hydrocephalus as a cause. There was some mild atrophy. Her depression scores are high.
She has seen the geriatric psychiatrist.
Dr. Ceide: Our patient had a long history of depression that predated her memory impairment. She had
losses in the past and these depressive episodes would last for months up to a year at time where she had
decreases in sleep, appetite, decrease in her interest, ruminating over things and even at times had passive
death thoughts that she would be better off dead. She hadn't in any former psychiatric hospitalizations and
no suicide attempts but she had been put on a dementia medication as we had discussed and had a family
October 2018 PHL Alz Dis & Death Cert Page 9
history that was significant for dementia. In terms of what would be helpful for her care would be
twofold. One is to address the ongoing psychiatric illness, and that is treating her with an anti-depressant.
The other would be to treat her coping skills which are now impaired because of her cognitive decline.
Dr. Rubina Malik: The goal is to help families as well as the primary care doctor follow through with a
care plan that is collaborative and involves community resources as well as a diagnosis, a plan, and a
prognosis for the families to follow through with.
Teresa Santos, LCSW: What we found was that in a the family was getting a lot of misinformation as far
as does she qualify for Medicaid, does she -- a lot of people were telling her in the community she did not
qualify for Medicaid and the issue about Medicaid became relevant because there was no long term care
insurance in place. Without the long term care insurance, they couldn't provide those services. And as you
all said, she is Spanish speaking. So I connected her with a culturally appropriate social day program. And
the family saw a significant increase in her mood. And she was even positive about attending the Path
program because she was socializing again.
Dr. Rubina Malik: We really try to illicit corroborative information with our caregivers. Those are all
the key elements that our geriatric assessment includes in our center for the aging brain for an assessment
of an older adult with cognitive complaints.
Moderator: So it’s great to hear about that process and I think you emphasized the importance of
multidisciplinary or interdisciplinary approach. Are there key points you would like to highlight for our audience?
Dr. Jessica Zwerling: Absolutely. Focusing on the patient and the caregiver, each interdisciplinary evaluation
whether it was from the psychiatrist or the social worker or the geriatrician provided an additional point for the
caregiver and the patient to ask questions. In addition, we were able to really guide and understand the strengths
and weaknesses of the patient and provide a come comprehensive assessment. In addition we were able to
understand what clinical trials may be appropriate for this patient as well. It is important in a the care be sensitive,
that we have screening that starts in primary care, and that we become the places for where there are red flags or
comprehensive evaluations that may be needed. It was culture and race sensitive. We would like to include allied
health professionals all along the way and continue with the multidisciplinary evaluation in the context with the
center of excellence and work with community based organizations to provide appropriate care plans for patients
Moderator: That sounds terrific. Let's talk about the progression of the disease. As I said earlier one of the focuses
is talking about the death components of this disease. How does the progression of Alzheimer’s lead to death?
Dr. Jessica Zwerling: Sometimes later in the disease and we talk about fast staging there are problems with
swallowing. That can lead to aspiration pneumonia. Patient may actually die of pneumonia or lung infection. In
addition it can lead to an immediate cause of death in Alzheimer’s disease. They may have swallowing problems
which leads to malnutrition, which can lead to electrolyte abnormalities then arrhythmia and the ultimately death.
There are increased susceptibilities to other infections. Other conditions like diabetes or heart disease may be more
difficult to manage as the disease progresses. And again in an age where there is no disease modifying therapy. We
understand the prognosis and course of typical Alzheimer’s disease. We have time to guide the patients and time to
empower families to look at and assign health care proxies and talk about advanced directives. Dying with
Alzheimer’s disease also becomes dying with dignity.
Moderator: what does this look like in terms of documenting the process when a person passes away?
Dr. Jessica Zwerling: So dying with Alzheimer’s disease, what you are looking at is an online death certificate
with the vital statistics. If you look in line one -- in line a, the patient died of cardiac arrest. When you look at line
b they may have died of congestive heart disease. You want to make sure that providers look back to the chart.
You can actually document Alzheimer’s disease. This is what is guiding -- the vital statistics are guiding public
health campaigns, guiding our research dollars. The accuracy of death certificates is so important. We have the
opportunity to act, reflect back on the medical chart and then act and document that the pneumonia was due to the
October 2018 PHL Alz Dis & Death Cert Page 10
underlying disease, there was problems with swallowing and it was due to the underlying disease of Alzheimer’s
Moderator: So it sounds like as things currently stand, perhaps the impact of Alzheimer’s disease isn't accurately
being captured on death certificates as you’re suggesting maybe we should be doing.
Dr. Jessica Zwerling: Absolutely. One in three adults are dying from Alzheimer’s disease. And we look at that the
landscape of Alzheimer’s disease in the future and really only about 5% of death certificates are linking the cause
to Alzheimer’s disease. Again, there are social and ethnic barriers to this. There are health disparities. We knew the
faces of dementia. It affects everybody. We need to understand these disparities to increase public health
awareness campaigns, to do screening in primary care, to have advocacy groups so we can educate allied health
professionals and really debunk the myth that you are not allowed to record for Alzheimer’s disease. I mean
Alzheimer’s disease is a contributing cause. It just requires look back flew the chart.
Moderator: thank you. One of the providers at Montefiore reviewed for us the process of completing a death
certificate. Let's take a look.
Dr. Rubina Malik: It's important that physicians appropriately document the underlying cause of the
ultimate cause of death. Pneumonia may be the ultimate cause of death. But it was really attributed to the
dementia process, which caused the motor problems, the swallowing problems, and the difficulty clearing
their secretions and ultimately to the death of our patients with cognitive issues. Sometimes our patients
pass away in the community but they oftentimes do pass away in a hospital setting or a nursing home
where other clinicians and other providers may be signing off on the death certificate. In the hospital,
resident house staff, hospitalists, often complete death certificates but they have an incomplete history. It's
behooving for the primary care doctor and all clinicians who take care of patients with an underlying
dementia to appropriately document in their past medical history the diagnosis of a dementia illness,
Alzheimer’s, vascular dementia, Lewy body dementia, should all be appropriately documented so clinics
remember to go back and review the chart and attribute the cause of death to the appropriate diagnoses.
We tend to underreport dementia. It is the sixth leading cause of death but it is probably much higher than
we have been able to record because of underreporting. Clinicians have to fill out a death certificate that
the primary focus of that is to identify the cause of death. The first line starts with what's the immediate
cause of death? And here you want to appropriately record the cause. Subsequent lines request physicians
to identify the consequence, what was the immediate precursor to the pneumonia? Was it due to the
dementia illness which is often is the primary cause for patients with a cognitive issue. Or was it heart
disease? Was it diabetes? Since dementia is underreported it is critical for physicians to look back at the
medical records and appropriately account for the chronic illnesses and comorbidities that's contributing
to the immediate cause of death. Physicians don't often tie pneumonia with dementia. That’s the critical
element that I would want all clinicians to be aware of, that the pneumonia was preceded by dementia for
Moderator: So after hearing about how this can and really should be documented, let's revisit the question of the
underestimation of death rates for Alzheimer’s disease. And can you talk a little bit more about that?
Dr. Jessica Zwerling: Absolutely, There was a study done at the National Institute in Aging in conjunction with
the Illinois Department of Health. They actually look back at more than one third of all deaths in the age group of
75 to 84 excluding the oldest of old was attributed to Alzheimer’s disease. That could actually be six times higher
than what was recorded in that particular year. So I don't want to have pom-poms for moving the disease from the
sixth or fifth leading cause of death higher, but if you actually look back and document accurately, that actually
would have been third leading cause of death in 2010. And it’s nearly three times higher in the oldest cohort as
Moderator: That’s a really significant jump to go from sixth to the third. So how would you summarize what you
think is needed to really increase the accuracy of death certificates and death reporting?
Dr. Jessica Zwerling: So we have been poised really well as the Center of Excellence funded by the Department
of Health to really form an advocacy committee on death certificate reporting. Concluding that Alzheimer’s
October 2018 PHL Alz Dis & Death Cert Page 11
disease is a cause of death ensuring that you go back to the record to see if there is a diagnosis of dementia,
vascular dementia, Alzheimer’s dementia, Parkinson’s dementia, lewy body disease, and documenting that is
crucial. Huge public impact with accuracy of death certificates and that guides funding, guides dollars, guides
research allocation. Really important. And that can be accomplished for more of what we talked about, early
diagnosis, early screening, making people aware of the signs and symptoms, especially when there is cultural and
ethnic barriers to this disease.
Moderator: Before we take questions from the audience, let me ask you, just as a general question, overall, how
do health care systems tackle Alzheimer’s care?
Dr. Jessica Zwerling: So again, original care was fragmented, but we don't have to have that anymore. Early
diagnosis is key. With Alzheimer’s disease you need time for planning. Using the quick screening tools -- I am not
going to ask you about the results of that testing on either of them, we can save that for after the show. But the
screening tools are appropriate for primary care use and they can be coordinated with an office visit. They can be
coordinated with the annual wellness visit as well. The delivery of care must be culture fair. So you cannot test
someone who may not have been used to learning not using culture fair instruments and giving the m lists of
learning if they have never gone to school and they have worked in the field all their life. Primary care and
community organizations need to work together, we need an understanding of what is surrounding us in the
community, how do we refer patients, what are the home health agencies available, what are the support groups,
what are the resources for our caregivers? And care planning again needs to incorporate both the caregiver and the
patient dyad and really take those two individuals together through our complicated health care system. So I
picture them hand in hand with the caregiver and the primary care physician as the central part of this but knowing
but those red flags are is extremely important. Our national plan has to be very culture fair.
Moderator: Thank you so much for all the information you have shared. I think this has been a really helpful
show this morning. We will take a few minutes, we have some questions that have come in from our audience. Let
me take a look and see what we have got here. We have quite a few. Our first question is, “As clinicians who are
trained to focus on our patients, what can we do to assist caregivers?’ I think that's a great question. If I am not the
patient coming in, I am the caregiver, can you as a physician address me, too? How does that work?
Dr. Jessica Zwerling: Absolutely. As we see that the caregivers are at increased risk for health concerns
themselves making sure that the caregiver has a primary care physician they can speak to as well. If the caregiver's
health isn't taken care of then they won't be able to take care of the patients. In an age without disease modifying
therapy we need to focus on the caregiver as well. We actually do some prescreening and look at caregiver stress
as a function. So we ask our caregivers before they get to the office visit how they are feeling, what is stressful for
them, and understand how they want to navigate that visit.
Moderator: Excellent. We have another question, “How do providers talk with caregivers about how to be an
advocate for their family member to make sure that providers know that Alzheimer’s is a contributing factor and
should be documented on the death certificate?”
Dr. Jessica Zwerling: Absolutely. So you want to increase awareness. Again it is going back to the family meal.
Putting away the electronic devices. Talking to your family member noticing a change in the language, a change in
the behavior, a change in the cooking. And really putting aside and raising flags that there may be a cause of
concern for memory impairment. Especially when we have intergenerational families. If grandma is in charge of
driving or navigating through the neighborhood with a young child we want to make sure that that navigation is
safe. So understanding that and recognizing that. In addition you can empower the caregivers by having the
patients appoint a health care proxy and doing the advanced directive, so that they remain a voice throughout the
process. So again, dying with Alzheimer’s disease is dyeing with dignity and people are able to guide their care.
Moderator: Thank you. The next question that we have, “Given that Alzheimer’s disease cannot be prevented,
cured, or significantly slowed, what is the advantage to early diagnosis?” I think you -- one of the key points is that
idea of dying with dignity. Maybe you can say more about that.
Dr. Jessica Zwerling: Absolutely. By understanding and recognizing the disease early on there are clinical trials
the patient can be involved in. It is educating both the caregiver and the patient who has a memory issue that there
October 2018 PHL Alz Dis & Death Cert Page 12
may be clinical trials that are available. Allowing and understanding the resources that are available is extremely
important. Again, signing a health care proxy. It is a misnomer that patients with mild Alzheimer’s disease may not
be able to appoint a health care proxy, capacity has to be assessed at each face visit. So just because of a diagnosis
of Alzheimer’s disease does not mean at that point in time that you lose your capacity. So it is important to have
these discussions early on.
Moderator: Absolutely. Alright, so our next question, “Recommended assessments to use for individuals with
down's syndrome or other intellectual disabilities who are at their baseline level of cognitive functioning non-vocal
or have visual impairments?”
Dr. Jessica Zwerling: So there are many tests we can do. There are different batteries. In fact in our center we test
in 17 different languages. We have face to face interpreters. There are different ways you can assess strength and
weaknesses. Patients that have intellectual disabilities you can actually get a baseline functioning
neuropsychological test and track them for changes over time, both in a culture fair manner. Someone brought up
Down’s syndrome. There is an elevated risk for Alzheimer’s disease, given the relation with the amyloid protein. It
is important to get a baseline assessment and track those changes over time.
Moderator: Excellent, thank you. Great questions. Another question that comes in, “Why are there data
discrepancies in regards to the cause of death from Alzheimer’s disease in the U.S.? For example, the Rush
Alzheimer’s Disease Center finds Alzheimer’s as the third leading cause of death in the U.S. In contrast, the CDC
finds Alzheimer’s as the sixth leading cause of death. What are we to make of the discrepancies when trying to
understand the burden of this disease on the U.S. population?”
Dr. Jessica Zwerling: That’s an excellent question. So actually when the Rush study looked back, they were able
to follow people over time and look back at the cause of death and there are brain donation programs and brain
autopsy programs, so we do have tissue diagnosis in a lot of patients too. But they were able to go back and really
track that and project the statistics. Those were projected statistics from that included Alzheimer’s as third leading
cause of death. But what’s needed and what we’ve been doing with the advocacy committees is training at multiple
levels, training at funeral directors, medical examiners, nurse practitioners, those filling out death certificates,
hospitalists at the house staff level when residents are in training. Sometimes the death certificate is filled out in
the middle of the night in the hospital and that person may not know that patient. Again, referring back to the chart.
And it’ll get easier because the electronic medical records are readily available. So if we are screening,
documenting, and putting memory loss, putting dementia as part of the diagnosis we will be able to use that and
then incorporate in the Vital Statistics Registry and guide health policy and allocations of resources that way.
Moderator: Excellent. Thank you. Another question, “Is stigma about Alzheimer’s disease a factor in the
underreporting of it on death certificates?”
Dr. Jessica Zwerling: Absolutely. Stigma play as real important role. We spoke about the vulnerability of older
adults. We spoke about the case of Margaret Thatcher how it wasn't discussed that she had a problem with multiple
infarcts or any memory problem. The key is, if you are going to treat diabetes, if you’re going to treat depression,
dementia is just another diagnosis. It’s recognizing and treating those vascular risk factors with that, that is so
important. Again, it's important to recognize and destigmatize because people are driving. How did you get to
work today? Did you drive today?
Moderator: Yes, I did drive.
Dr. Jessica Zwerling: People with memory problems are driving on the road. It’s very important to screen and
recognize people that are at risk that may not be able to navigate through the neighborhood because they are at a
certain stage of their memory problems.
Moderator: Sure. That's an excellent point. Another question that we have that's come in, “Can you talk more or
give an example of what a culture fair approach would be?”
Dr. Jessica Zwerling: Absolutely. We saw some of the culture fair approaches within the context of our
multidisciplinary discussion that patient was tested in their native language. They were primarily Spanish speaking
October 2018 PHL Alz Dis & Death Cert Page 13
and preferred to be tested in the language. We can't test someone with an eighth grade education as we would test
someone with a master's level of education. So it’s very important when doing a comprehensive
neuropsychological assessment that you understand the strengths and weaknesses of where they are coming from.
You test people appropriately and compare them to peers as far as education. If patients have visual impairment
there are other tests we can do as well, language impairment is important. If patients are illiterate we can use fair
screening tools. one of the screening tools we spoke about was the picture version of the memory impairment
screen because by and large there are lot of people that may not know how to read or there might be a language
barrier, so using a picture is culturally fair and important.
Moderator: Excellent. We have a few more questions. One them is, “What can we do as clinics who are not
always in attendance when a patient dies do to ensure Alzheimer’s is listed as a cause of death on the death
Dr. Jessica Zwerling: That is part of our large educational campaign. Ideally what we would love to do is when
the death certificate comes up, we would like to have a pop-up record that says does the patient have dementia?
And then be able to connect to an electronic medical record. That’s in an ideal setting. But going back and asking
and making a call to the primary care physician after it is recorded and you can go back and edit things, that’s a
possible tool for that. We have also been look at the medical examiners and funeral directors and educating them
about dementia and Alzheimer’s disease, too.
Moderator: Thank you. We have one more question that we are going to get to and that is, “Can you tell us what
kind of research is being conducted into the causes, prevention, or treatment of Alzheimer’s disease and related
dementia? And how can clinicians, patients, and caregivers find out about clinical trials?” I know you mentioned
clinical trials earlier. Can you talk a little bit about that?
Dr. Jessica Zwerling: Absolutely. There is trial match, which is part of the Alzheimer’s association in
clinicaltrials.gov, which is a site that has all the registered trials that are available. You can do trial match and
understand the diagnosis and trials that are in your area. But knowing and getting a comprehensive evaluation and
a diagnosis, your provider can help you with you guiding through that.
Moderator: Excellent. Well, thank you so much for answering so many questions and thank you for everything
that you have shared with us today. I think this has been a tremendously helpful broadcast on a topic that I think
probably everyone can relate to on some level. So thank you very much for being here.
Dr. Jessica Zwerling: Thank you for having me Rachel.
Moderator: And thank you very much for joining us today. Please remember to fill out your evaluations online.
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