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Episode #1914
Understanding Alzheimer’s
Lewis: Mitchell Lewis, host
Schmechel:Donald
E. Schmechel, MD
Davis: Cordelia Davis
Edmonds: Henry L. Edmonds M. Ed.
Lewis:
It
is often joked about in regard to older people, but this disease
is no laughing matter. Get the facts on Alzheimer’s
disease and why African-Americans should be especially concerned
next on Black Issues Forum.
Voiceover:
This program was made possible by contributions to UNC-TV
from viewers like you. Thank you.
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MUSIC]
Lewis:
Good evening, everyone and welcome to Black Issues Forum.
I’m Mitchell Lewis. Tonight we discuss a health issue
that more and more of us are going to have to face as our
population of adults lives longer. The concern, Alzheimer’s
disease. According to reports by the Centers for Disease Control
and the National Institute on Aging, only 7% of those with
Alzheimer’s in the year 2000 were age 65 to 74 while
40% were age 85 and older. But by the year 2050, it is projected
that 60% of the 85 and older group will have Alzheimer’s.
It is also predicted that over the next 10 years the older
Caucasian population will increase two fold, the older African-American
population will increase three fold and the older Hispanic
population ten fold. Clearly, as our population of older adults
grows, we’ll need to understand how to cope with this
disease, whether as potential caregivers or otherwise. Here
to educate us on the facts and also share their personal experiences
are our guests. I’d first like to welcome Doctor Donald
E. Schmechel, director of the Joseph and Kathleen Bryan Alzheimer’s
Disease Research Center at Duke University Medical Center.
Also, Cordelia Davis, a statewide visitor for the African-American
Community Outreach Program at the Bryan Alzheimer’s
Disease Research Center who was a caregiver for her parents
and later formed an Alzheimer’s caregiver support group
along with her sister. And lastly, the Reverend Henry L. Edmonds,
coordinator for the African-American Community Outreach Program
at the Bryan Alzheimer’s Disease Research Center. Please
note that information in this program is for informational
purposes and is not intended for use as diagnosis or treatment
of a health problem or as a substitute for consulting a licensed
healthcare professional for medical advice, instruction, diagnosis
or treatment. If you have specific questions or concerns,
please consult your physician or appropriate licensed healthcare
professional. And to the three of you, welcome to Black
Issues Forum.
GROUP:
Thank you.
Lewis:
Doctor Schmechel, I’ll begin with you first. Tell
us somewhat of a background of Alzheimer’s disease and
in layman’s terms, what makes it a disease?
Schmechel:
Well, as you mentioned, Mitch, it is just incredibly common
in our current population. We do consider it a disease because
the initial case that was described early in 1910, roughly,
was a woman who first began to have some memory problems and
change in personality behavior. It was progressive. She eventually
died of that problem and when Doctor Alzheimer examined her
brain, there were plaques and tangles and damage in the very
areas that affect memory and behavior, language and personality.
So, from that point on it became recognized as a disease and
nowadays, obviously, we have more modern methods like brain
scans and clinical exams to detect it. I would say we consider
it a disease because it does effect a physical damage to the
nervous system. It is progressive and it basically is not
normal aging. That is the major battle we fight, is, does
this person have normal aging changes or do they have disease?
And the other thing I think we struggle with, quite honestly,
is as we do with anything, “I have a mild problem. Do
I really have a disease or not?” So, part of the whole
thrust is when we say disease it sounds a little negative,
but diseases begin silently, like with hypertension and heart
disease and so that is part of the issue. Even when it is
silent and early it is still a disease.
Lewis:
Now, in this day and age, why should we be more concerned
about Alzheimer’s?
Schmechel:
Well, it is most simple, I think, the older you get, the
more at risk you are for this illness. And as we may bring
forth during this discussion, in the United States and developed
countries, the conditions to make this very common seem to
exist, just like they do for diabetes and high blood pressure
and the like. So that the older you get, the more at risk
you are. We are basically almost all of us at risk of this
disease.
Lewis:
Reverend Edmonds, about a year ago, your father-in-law
died of Alzheimer’s.
Edmonds:
Yes.
Lewis:
How did you find out that he had the disease?
Edmonds:
Well, when we found out, we, my wife and I, knew nothing
about Alzheimer’s disease and I think that is probably
the case with many of us today. We know very little about
the disease itself so we learned about the disease from the
doctors and also from the Alzheimer’s Association. That
is how we began to get involved with the Alzheimer’s
disease and also support groups that would help support us
in the process of caring for my father-in-law. One of the
things that I’d like to mention though, is that Alzheimer’s
is a disease that affects people at late ages. One of the
things that I think is very important for us to realize is
that we are living longer now, particularly African-Americans.
Where before, we didn’t hear much about Alzheimer ’s
disease, now we hear more of it because we are living longer.
The longer we live, the more propensity there is for us to
contract the disease.
Lewis:
Now, I understand that you had to place your father-in-law
into a nursing home. How difficult was that decision?
Edmonds:
That is very difficult. Particularly in the African-American
community, because we have a tendency to want to keep our
relatives at home. It has just been consistent with African-American
experience to keep your relatives at home and care for them
as long as you could in the home. But with the cost of caring
for somebody with Alzheimer’s, making changes in the
home, mobility is a problem, all kinds of other problems that
occur and not being able to stay there and be with them 24
hours a day is really a problem. My wife had to work and I’m
working also. We had just, in fact, gotten our children out
of the house and we were home alone when we were confronted
with this issue of Alzheimer ’s disease.
Lewis:
Ms. Davis, I understand that you have experienced this
disease on many levels as it relates to your family. Tell
us about that.
Davis:
Well, first my mother had the disease and right after
she was diagnosed, well, actually the same day that my mother
was diagnosed with Alzheimer’s, the doctors were trying
to explain to us that my mother had Alzheimer’s and
my dad could never understand it. The doctors actually looked
at us like, “Well, do we need to have him checked too?”
And we were like, “Yeah, we know.” So, at that
point, we knew that we had another problem with our father.
My mother was in a nursing home for a while but she died in
a nursing home. We actually put her in two. When we were looking
for the third nursing home was when she died. And my father,
we cared for him at home for as long as we could. Then we
took turns taking him in to my brother and my sister’s
house. And after that didn’t work, he was eventually
placed in a nursing home. He died in 2000—2001, I think,
or 2000. After that, I have some uncles that have had Alzheimer’s,
have died with Alzheimer’s. I’ve got aunts, cousins,
probably my grandfather and it is basically on both sides
of my family, so, it is a disease that I know a lot about.
It has been hard and it has continued to be hard. Right now
we are caring for my aunt that has been diagnosed with the
disease. Right now, basically, my sister is her main caregiver
right now.
Lewis:
Doctor Schmechel, is there any type of hereditary trait,
either by ethnic group, that is related to Alzheimer’s?
Schmechel:
Well, the key hunch right now, and the key search on the
research basis, both by the Bryan ADRC, the Center for Human
Genetics at Duke and many of the other Alzheimer’s centers
across the country, is to look for precisely that—genetic
factors that might influence your susceptibility to the disease.
My mother has Alzheimer’s but no one else in my family.
I think Henry’s family provides another family where
there are one or two cases. But clearly, Cordelia’s
family is a case where, or a family where there have been
quite a number of people affected. Now, one thing that is
very interesting, I think, is the apolipoprotein E gene, which
is a cholesterol transport gene and involved in information
repair. It is a gene that is very common in both Caucasian
and African-Americans and we think that is one of the genes
that gives you more vulnerability to Alzheimer’s, there
is a wide variety of that gene, it is very common and it is
present in about 30% of people, and that, for example, gives
you added vulnerability. But we think, and that is the reason
for continued research, that there may be other genes and
also we think that most of these genes are probably very similar
in Caucasians and African-Americans. There is no difference
there on the basis of ethnic origin but there way well be
differences in terms of other exposures and risk factors that
make, what you refer to, I think, as closed without comment,
that Alzheimer’s disease and related dimensions and
prongs are much more prevalent in the African-American population
than the Caucasian population, by about a two fold factor.
So, there may be some factors that are common to both ethnic
groups, there may be others that are unique. The hunt continues
because the story is not over yet as far as what vulnerability
produces both the cyclo-sporadic case, typified by Reverend
Edmonds and mine, and these more concentrated cases.
Lewis:
Would diet play a role in Alzheimer’s disease?
Schmechel:
You, of course, said that you didn’t give any recommendations
at the beginning of this program, but without giving a recommendation,
one of the hottest research topics right now is the effect
of cholesterol in diet on Alzheimer’s disease. And many
of the drugs, like statins and other types in the news that
are being done, just like for the hardening of the arteries,
down below the neck, it may affect the inflammation and Alzheimer’s
process up above. It is not a one-to-one match that what is
good for the heart or the arteries is good for the brain,
but we think cholesterol and diet is one of the reasons that
people in the United States have such a high amount of Alzheimer’s
disease. Very exciting research is there to say that when
you are on more traditional diets that are not quite as high
in bad fats as the American diet, your risk of Alzheimer’s
disease decreases immensely. Not to zero, but much lower than
what we are looking at right now.
Edmonds:
There was a cross-cultural study done that relates to
that.
Schmechel:
Right.
Edmonds:
That was done between Africans and African-Americans and
it was found that those persons who were in Africa had less
dementia or Alzheimer’s disease than a similar group
of African-Americans. Perhaps Doctor Schmechel could relate
to that?
Schmechel:
Well, I think you said it all Henry. That is the kind
of evidence that suggests to us that the American diet is
one of the risk factors for Alzheimer’s, we would never
want to say that that is why your family had so many cases,
because it may well be strong genetic factors, and probably
other things also.
Lewis:
Ms. Davis, I’d like to get back to you. With all
of these relatives with Alzheimer’s, what were the challenges?
What are the challenges that you are facing?
Davis:
The thing that really was a struggle for me, personally,
was the, the loss. The loss of my parents when they were still
here. It was like them dyeing but not dyeing. That was very
hard for me, for them not knowing me. That was very, very
hard. And just carrying on with my life at. At the point when
my mother was diagnosed, I had two young children, I had some
older children, but I had two very young children. I was working
and I was in school at that time and it was a struggle. It
was a… I can’t tell you, I just can’t tell
you how hard it was. I actually had to stop school. I ended
up leaving my job. It was very, very hard for me—just
to lose parents. With Alzheimer’s they are there, but
they are not there. And it is nothing that you can do. Like,
sometimes, my children would actually just have to remind
me, “Momma, you know, he’s sick. You know granddaddy
is sick,” because it would get so frustrating at some
times trying to deal with them and with them not knowing you,
wanting to leave your house and you are trying to get them
to stay. For them, it is not home because it is not the home
that they remember. They remember the home that they grew
up in and that is where they are trying to get to and you
are trying to, you know, deal with it. It is hard.
Lewis:
How important is having support of family during this
time?
Davis:
Very, very. If I did not have my sister and brother, I
could not have made it. My sister was living in Pennsylvania,
she actually moved back here to help us with mom. And I know
that there are families that don’t have that kind of
family support, a lot of the times it is just one person in
the family that takes care of that person. But that caregiver
will—they can’t handle it. It is too much for
one person to handle. It is so important to have everyone
there, to have everyone involved and everyone knowing what
is going on.
Lewis:
Reverend Edmonds, what were some of the things that you
faced?
Edmonds:
The same things. One of the things that I’d like
to mention, though, is that that is a role, really, that the
church can play in helping to develop and form caregiver groups.
So often, which was the case in our case, actually where my
father-in-law’s church really did not get involved at
all in providing any respite care, any kind of help for us
at all. So it is important that churches begin to understand
this problem and help in even little ways that providing,
by providing respite care or, you know, any other kind of
help that they could provide to assist caregivers and supporting
them in this role.
Lewis:
Let’s move on a little bit to prevention and care.
Doctor Schmechel, what are things that people can do or are
there any signs that they can look for on the onset of Alzheimer’s?
Schmechel:
Well, I’m old enough to now have little memory senior
moments, that, you know, afflict us all, I guess where you
say, “I’m A okay.” There are some changes
that occur with aging. Our major goal, from a research point
of view, and I guess I could speak for all three of us, since
we have Alzheimer’s disease in our three families represented
here, is we believe that the sooner the diagnosis is made
and the sooner treatment is initiated, the better off that
person will fair. And so, the battle, so to speak is to take
someone who perhaps is at an early stage or at risk and either
diagnose that they are okay and that nothing is wrong, perhaps
diagnose that they have a sleep problem or depression or anxiety
or medication side effects. Or, in fact, perhaps establish
that they are in the beginnings of Alzheimer’s disease
or vascular dementia or mini-stroke disease and get in there
and treat it early. There is no doubt that the research is
important to do and easier to do in the earlier stages. Although,
research is done on all stages of the illness. And so, that
is sort of the goal. We don’t want to see people go
on. At the moment, as an Alzheimer’s center, you have
to deal with helping families, helping caregivers, refer them
to support groups, deal with the medical treatment of people
in middle or late stages. And again, as far as the future
is concerned, that someday there would be no more __ like
this. That is where we get back to this issue, I suppose,
of getting people into research or getting people to a doctor
or physician early so that… Sometimes the family brings
them, of course, but so that that gets checked out and dealt
with.
Lewis:
What types of research are we looking at now? What is
available?
Schmechel:
Well, the good news is that there is an amazing amount
of research. Some of it is designed for caregiver research
and support groups in terms of how to deal and do those types
of things. A lot of the research has to do with genetics so
that in a family, where there are multiple cases, samples
are taken to try to understand. If you take hundreds of those
families, what are the factors that produce vulnerability
or disease? The good news is there is a tremendous amount
of disease, in terms of early detection, using easy methods.
And the second thing would effective treatment. There is tremendous
research on effective treatment going on right now.
Lewis:
What treatments are available now?
Schmechel:
Well, the standard treatment right now, very briefly,
is to identify any risk factors for nervous system injuries,
so a tendency to stroke, high blood pressure or diabetes,
dealing wit those. The diet and fat-lipid issue is a big one.
It is very difficult but needs to be dealt with. And then
we’re back to a really basic program which includes
Vitamin E supplementation. And there is a whole class of drugs
called the cholinesterase inhibitors, which evidence now seems to
suggest that if they are started early, actually stabilize
the disease to some degree. After that, the list is endless:
statin drugs, the new treatment they are looking at, things
to suppress the inflammation. Many of these are what I call
a research basis, where you go into a research program at
Duke or another medical center and you do run the risk of
being on sugar pill but that is the only way to prove that
something works. So, there is a tremendous range of opportunities.
We feel it is very important to encourage both ourselves as
someone involved in this as well as patients we work with.
Hey, this is actually a treatable illness now. We don’t
think we have cured it but we think we have strategies for
what would be called diseased modified. They perhaps slow
the progression and so in that very touchy area, we haven’t
cured it yet, but the idea that people should sit at home
and do nothing is not where it is at. There are effective
treatments to help deal with it.
Lewis:
Reverend Edmonds?
Edmonds:
Yes, Mitch, one of the things I just wanted to add to
what he was saying there is that the African-Americans have
a tendency not to get involved in research. And that is really
part of the detriment for us as a people. We need to become
involved in research studies and clinical trials. As a result,
perhaps some of the medications that have been developed out
of clinical trials, may not have a… The same effect
on us as people as it would have on the general population.
So, becoming involved in clinical trials and drug trials is
really necessary for us as a people. The other thing that
I’d like to mention is that one of the only ways that
you can really diagnose Alzheimer’s is after death,
during an autopsy, a brain autopsy. When we look at the number,
we have a brain bank at the Bryan Center which has over 2,000
or 3,000 brains at the moment. I don’t know the exact
number but the number of African-American brains that we have
in that bank is less than 20. It is really necessary for us
to become involved in brain donation so that we can find out
why this disease impacts us at a greater rate than others.
Lewis:
Ms. Davis, you lead a support group. Tell us about the
support group and what are some of the things available?
Davis:
Okay, first, let me tell you how I got involved in the
support group. I actually started going to Duke’s support
group after my mother was diagnosed. My sister and I started
going to that and I can’t tell you, it was such a great
help just to know that other people understood what you were
going through and there were other people that were going
through the same thing. That we cried together, we laughed
and one of the main things I learned there was that it was
okay to laugh. Because some of the things that my parents
were doing were actually funny. And I used to call my sister
and say, “Girl! You’re not going to believe what
your mom did today!” And it was a relief to know that
you could laugh at it because you could either laugh or you
could cry. When my mom was first diagnosed, I cried all the
time. And then to learn that you can laugh, that is okay to
do that, it was such a relief. And my sister and I, we wanted
to do something. After my mom died we just said, “Okay,
what can we do to help?” So, we talked to the Alzheimer’s
chapter in Raleigh and we talked to the support group that
we were going to at Duke and we came up with our own group.
And what we do is we are just there for people, for any caregivers
to know that there is someone else going through it, that
we understand. Like sometimes someone will call 2:00 or 3:00
a.m. and want to talk. They just need some relief. They need
to get it out, and we are there.
Lewis:
And I have to stop it here. We’ve run out of time.
I’d like to thank the three of you, Doctor Schmechel,
Ms. Davis, and Reverend Edmonds, for sharing your stories
with us. And once again, information in this program is for
informational purposes and is not intended for use as diagnosis
or treatment of a health problem or as a substitute for consulting
a licensed health care professional for medical advice, instruction,
diagnosis or treatment. If you have specific questions or
concerns, please consult your physician or appropriate licensed
healthcare professional. If you’d like to learn more
about the work of our guests, or obtain a transcript of tonight’s
show about Alzheimer’s disease, visit us online at unctv.org/bif.
When you visit be sure to give us your comments and program
suggestions. You can also call us on the BIF line at 919-549-7167.
Be sure to join us each and every Friday night at 9:30 p.m.
for more stimulating discussion. For Black Issues Forum,
I’m Mitchell Lewis. Good night.
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