Can You Imagine a World without
Alzheimer’s Disease?
The major goal of the University of Arkansas for Medical
Sciences (UAMS) Memory Research Center is to join with other research
centers in the country to find a cure for memory problems. At the UAMS
Memory Research Center, a team of healthcare professionals works
together to test memory in older adults.
Participation in the Memory Research Center is voluntary and free.
Individuals 65 years of age and older can enroll. Adults who are younger
than 65 and have memory problems can also participate. During the first
year of participation, volunteers take a series of tests that usually
require two visits within a one-month period. Participants come back
each year to retake some of the tests. All visits take place at the
Donald W. Reynolds Center on Aging on the UAMS Little Rock campus or at
selected UAMS Centers on Aging throughout the state of Arkansas. The
Center focuses on the diagnosis, management, and genetics of memory
disorders, as well as on caregiver support.
Why should I participate in the Memory
Research Center?
Scientific research is critical to finding ways to prevent, treat, and
cure Alzheimer’s disease and related disorders. When you take part in
this research you are a partner in science. In addition, you will be
adding to the health and well being of future patients and their
families.
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Benefits of being a participant:
Participating in research is a special way to provide a gift. This gift
may help patients with memory problems and may help your grandchildren.
While you may not receive direct health care, you will help to add to
our understanding of aging and memory problems.
There is no cost to the participant. Participants will receive $25 for
completion of in-person evaluations scheduled once each year. If test
procedures require your presence at UAMS during the lunch hour, we will
reimburse you for your lunch expenses (up to $10). Transportation is
also available to participants upon request.
Participants are also eligible to enroll in other studies related to
aging and memory.
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What are some reasons that people
participate in the Memory Research Center program?
They hope that their effort will help others: “I’ve been given a really
wonderful life and feel I should pass on all the good I can.” “Always
interested in research. Know from experience how research wiped out
polio.”
Finding a cause: “Because I have three children, I am very concerned
about the cause of the disease.”
Hope for a cure: “Any way we can find a cure would be wonderful, and
being a part of the solution would be wonderful.”
Sense of doing everything possible, something useful: “At least you feel
like you are doing something in a situation that at this point seems
hopeless.”
Being in touch with caring people who are leading experts on memory
loss: “We wanted to be in contact with people and sources knowledgeable
about this illness.”
Access to experimental medications, medical benefits: “To have the
benefits of a review of the patient’s condition and access to the latest
medications.”
Information and knowledge: “I have learned so much that enables me to
cope with the parent-child reversal.” “I really learned a lot of caregiving and referral information.”
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What happens when I enroll?
If you decide to be a part of the study and meet the
criteria, you will come to our center for an evaluation once a year for
as long as you are physically able. After you contact the Memory
Research Center, a packet will be sent to you or your caregiver. This
packet will have a copy of the Memory Research Center patient
information and consent form for review. The packet also will include a
Memory Research Center intake questionnaire, a food questionnaire, and a
request for release of medical records. We would like for you or your
caregiver to fill out these forms before your first visit. The first
evaluation usually consists of two visits. Each visit takes
approximately three to four hours. In following years, this evaluation usually
takes one visit. A caregiver is required to accompany
all participants with Alzheimer’s disease or other related disorders to
their annual visits. People who take part in the study and do not have
any memory problems are called “control” participants. While it is not
required that control participants bring a close friend or family
member, we do request the name and phone number of someone who knows you
well.
The first visit
takes about four hours. This visit will be with the research nurse
to review the research study, get informed consent, and review and update
any needed information. After the research nurse is finished, special
paper and pencil puzzles, and question and answer tests will be used to
check memory and thinking. The second visit will take about three hours.
In this visit the neurologist usually will interview the caregiver and
the participant and then perform a neurological examination. An
appointment with the social worker will follow the exam to take care of
any emotional or social needs can be taken care of. A small sample of blood
also will be drawn at this visit to study risk factors for Alzheimer’s
disease and related disorders. Depending on the results of the tests and
the health care professionals' other findings, the health care team might
recommend further tests, the involvement of other health care
professionals and follow-up visits.
At
your annual evaluation visits, a Research Center staff member will talk
with you and your caregiver about your medical history, the medicines
you are taking, and any memory problems you may be having.
Tests to measure how you are thinking will be given.
A doctor will
do a physical and neurological exam.
No
medicines or other treatments will be offered as part of the Memory
Research Center program. We will give you information about and
encourage you to consider joining other research studies.
Study of the brain after death is also a very important part of the
Memory Research Center. As part of your visit, a staff member will
discuss brain autopsy procedures with you. Click here to find out more
about autopsy.
Follow-up evaluation visits usually take less time and are used to see
changes in the participant and caregiver since the last visit. They also
are used to perform tests that were not completed in the first
evaluation. Follow-up evaluation visits might involve the entire team or
just a few members depending on the goal of the visit.
You
also may expect a brief follow-up call by a member of the Memory
Research Center approximately six months after your annual evaluation
visit.
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How do I enroll?
To
contact our center for more information about the program or to enroll,
please call
(501)526-6500 or toll free at 1-866-628-6001.
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RESEARCH OPPORTUNITIES
The UAMS Memory Research Center funds several pilot studies each year.
The following pilot studies are in progress right now. If you fit the
requirements and are interested in participating, please call or e-mail
the contact person.
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Study Title:
Treatment of Language and Memory in
Patients with Alzheimer’s Disease: A
Comparison Between Drug Therapy and
Drug Therapy Plus Behavioral Intervention
Investigators: Kimberly McCullough,
PhD, CCC-SLP
Gary McCullough, PhD
Pham Liem, MD
Description:
The
purpose of this study is to
collect data on the effects of behavioral interventions for
memory and communication deficits in persons taking
cholinesterase inhibitors compared with the effects of
cholinesterase inhibitors alone. Initial testing will include a
written case history, tests of communication skills, and
interviews with the participants, family, and staff caregivers
to help select potential goals for treatment. Participants will
be randomly selected to participate in Group A (control) or
Group B (intervention). Group A will use a Caregiver Checklist
for eight weeks to identify any increase or decrease in the
occurrence of the identified communication deficits. Group B
will have 16 treatment sessions by a Speech Language Pathologist
during the eight-week period. A post test will be administered
to all participants.
Needed:
20 individuals with mild
to moderate dementia who are already taking cholinesterase
inhibitors
Cost:
Free of charge
Reimbursement:
None, but the Intervention Group, Group B, will receive 16
therapy sessions at no charge
Time
Commitment:
All participants: Initial testing (two 1-hour sessions)
Group
A: Use Caregiver Checklist for 8 weeks. Post evaluation (two
1-hour sessions)
Group
B: Two
1-hour treatment sessions per week for 8 weeks (16 treatment
sessions). Post evaluation (two
1-hour sessions)
Contact Persons: Dr.
Kimberly McCullough, 501-450-5488,
kmccullo@mail.uca.edu
Dr. Gary McCullough, 501-686-8754,
McculloughGaryH@uams.edu
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Alzheimer's
Disease Genetics Initiative
Searching for
1,000 Families with Multiple Members with AD
National Cell Repository for Alzheimer's Disease (NCRAD)
For more information, please call 1-800-526-2839 or email
alzstudy@iupui.edu.
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Autopsy: A Gift of Hope
Click here to download "The Gift of Hope"
brochure.
(You must have Adobe
Reader to view.
Click here to download Adobe Reader.)
The UAMS Memory Research Center is committed to research
and education about normal aging, Alzheimer’s disease and other memory
problems. This includes educating the public about the importance of brain
examination following death.
Frequently Asked Questions:
Why is brain tissue needed for scientific
research?
At
this time, doctors can only diagnose Alzheimer’s disease during life with
85% accuracy. A definite diagnosis can only be made by studying the brain
after death.
Additionally, we understand very little about normal brain aging. To figure out why people develop Alzheimer’s disease and other memory
disorders we must first find out what is typical of brain tissue in
healthy older adults. To do this, we need to compare the brain tissue of
people with Alzheimer’s disease with the brain tissue of people who do not
have Alzheimer’s disease.
We
need to know how other diseases might make Alzheimer’s disease worse, and
doctors need to know how these diseases may affect treatment. There is
little known about other diseases that may occur in Alzheimer’s disease
patients. For this reason, we need to examine other organs in addition to
the brain.
An
autopsy allows doctors to study organ tissue using many methods. When
doctors examine organ tissue, they get new clues about what causes
Alzheimer’s disease. They also may find new ways to prevent and treat it.
Autopsy is the most accurate way to diagnose Alzheimer’s disease and other
illnesses causing memory problems. Being in our autopsy program makes you
a part of our research team.
Your
autopsy donation will contribute to prevention and treatment of
Alzheimer’s disease. Future patients and families may benefit because of
your help.
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Why should I sign up for autopsy donation?
Brain
donation enables the donor and his or her family to add to research on
Alzheimer’s disease and other diseases of the brain. Additionally,
Alzheimer’s disease is sometimes misdiagnosed by doctors, and the only way
the family will know for certain that their loved one actually had
Alzheimer’s disease is by having an autopsy done.
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How will the information obtained from an
autopsy benefit my family?
Examination of the brain after death is often the only way to be sure of
the diagnosis made before death. Although Alzheimer’s disease is the most
common, there are many causes of dementia. Other causes are stroke,
Parkinson’s disease, and alcoholism. These conditions may occur alone or
in combination. This makes clinical diagnosis even more difficult.
Learning the exact cause of the patient’s dementia can be a great relief
to the family. It can help them close this chapter in their lives.
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What is involved in an autopsy?
Autopsy technique for removing organs have changed very little in the past
100 years, although there are new ways of examining these organs. During
autopsy of the brain, for instance, a medical specialist removes the brain
by making an incision in the back of the head. After the brain is removed,
the incision is closed.
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I have already signed the “donor card” on
my driver’s license, isn’t that enough?
No.
Even though you may have signed the donor card that comes with your
driver’s license, this does not give us permission to receive your brain.
The state of Arkansas donor card authorizes the removal of organs such as
the heart or kidney that can be used in transplants at the time of death.
Also, there is no way for the state to contact us at the time of death.
Therefore, you need to be pre-enrolled in our autopsy program for us to
get the proper paperwork and receive a timely notification of death.
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Why register for autopsy in advance rather
than at the time of death?
Time
is critical. A minimum number of hours between death and donation
preserves the tissue best and ensures the best research value. Therefore,
we require donors to be registered with our program prior to death. We
regret that we cannot accept cases for which we do not have prior
registration.
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Who can give consent?
In
Arkansas, the donor may give consent or the next of kin may give consent
for donation following death. Next of kin would be a family member such as
a spouse, child, or sibling. A legal guardian or someone with durable
power of attorney may also consent.
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How does the family provide consent for
autopsy?
The
patient’s next of kin is usually the person who gives consent for
autopsy. The family should discuss the issue together to reach agreement.
The next of kin will receive and sign a legal consent form giving us
consent to do this procedure. Copies of the signed form should go to the
patient’s doctor, the hospital pathologist, the funeral home, and the
nursing home, if that is where the patient is when he or she dies.
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When should plans be made for this
procedure?
Although some older adults with memory disorders may live for many years,
families should start thinking about autopsy in the early stages of the
illness. It is important to make the necessary arrangements well in
advance, since family members need time to discuss this issue.
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Can family find out the results of the
autopsy?
Upon
request, the family will receive a letter with the results a few weeks
after the autopsy.
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Will autopsy interfere with the funeral?
We
work closely with funeral homes to avoid delays in funeral preparation,
and the autopsy is performed in such a way that it is not visible if open
casket viewing is preferred.
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How much will this cost?
There
is no cost to UAMS Memory Research Center donors or their family members.
Transportation for autopsy will be provided free of charge.
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Religious concerns?
Most
religions generally allow autopsy and donation of a person’s organs. In
fact, organ donation is encouraged among most religions. It is viewed as a
way to help others. If you have concerns about this issue, you should
check with your religious leader.
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Who can participate?
Any
person who lives in the state of Arkansas is invited to be a part of our
autopsy donation program. A person is eligible after he or she has
completed the Memory Research Center evaluation. If you would like
to participate in our study, you
are encouraged to sign an autopsy consent form. This gives us permission
to do an autopsy at the time of death.
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What if I change my mind?
You
can cancel your enrollment from the program at any time. Just call or
write to the Memory Research Center. Also, you can always decide at the
time of death not to let the Tissue Repository know that the patient has
died. If we do not receive a call at the time of death by a family member
or health care professional, there is no way we can go forward with a
donation. We want everyone to be comfortable with the decision to donate
or not. If your feelings change or you have new questions, do not hesitate
to contact us. We will never proceed with a donation if the family has
changed their mind.
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How do I enroll?
If
you or anyone you know is interested, please contact
Kathy Tyler, RN at (501)526-6500
or toll free at 1-866-628-6001.
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