What
is involved in a typical examination?
How is the information obtained from testing used?
Why is brain tissue from an autopsy needed for Alzheimer Research?
What is involved in arranging an autopsy?
How does the autopsy affect funeral arrangements?
How do I enroll in the Indiana Alzheimer Disease Center?
Q. What is involved
in a typical examination?
A. A typical annual visit to the Indiana Alzheimer Disease Center involves
three separate examinations and takes approximately 3 hours.
Part 1: The Neuropsychological Examination. This
purpose of this examination is to characterize the memory and thinking
abilities of the patient. This examination lasts approximately 1½ hours.
Part 2: The Informant Interview. The purpose of
this examination is to obtain information from a close family member
or caregiver regarding the current physical, mental and behavioral health
of the patient as well as any changes they have noticed. This examination
lasts approximately 1½ hours and is usually done simultaneously
with the neuropsychological examination.
Part 3: The Physical Examination. The purpose of this examination is
to characterize the physical, mental and behavioral status of the patient.
Also involved in this examination are blood tests and lumbar punctures.
This examination lasts approximately 30 minutes.
Q. How is the information obtained from testing used? (top)
A. Information used by the Indiana Alzheimer Disease Center will help
efforts to:
1.) Identify genetic causes of Alzheimer disease.
2.) Identify environmental risk factors of Alzheimer disease.
3.) Develop technology in the early diagnosis and treatment of Alzheimer disease.
Data are used in studies performed here at Indiana University. In addition
the information is entered into a national databank where it can be accessed
by researches around the world. The identity of Indiana Alzheimer Disease
Center subjects is kept strictly confidential.
Q. Why is brain tissue from an autopsy needed for Alzheimer Research? (top)
A. Currently a definite diagnosis of Alzheimer disease can be made only
through direct examination of the brain after death. This establishes
the need for autopsy tissue from well-studied patients, such as those
followed by the Indiana Alzheimer Disease Center. Since the symptoms
of different patients with Alzheimer disease are not identical, and
the changes in the brain tissue seen under the microscope vary from
case to case, it is important to be able to compare the patient's symptoms
with the pathological changes in the brain. New scientific techniques
are now being used to compare the changes caused by Alzheimer disease
with the patient's symptoms during life. In this way, we can better
understand the causes of memory loss and other mental or behavioral
problems associated with this disorder.
Q. What is involved in arranging an autopsy? (top)
A. According to Indiana law, consent for an autopsy must be given by the
next of kin at the time of death. When an Indiana Alzheimer Disease
Center subject and their family decide that they will want to have this
examination done, the paperwork is filled out ahead of time and kept
on file. When the Indiana Alzheimer Disease Center is notified of a
participant's death, consent will be confirmed with the family and the
papers will be signed by the physician.
The following steps should be taken in prearranging an autopsy.
1.) Discuss the autopsy decision with family members.
2.) Complete the Request for Postmortem Examination and return in the
provided business reply envelope.
3.) Contact the funeral service you plan to use.
a.) Have the body transported to Indiana University Medical Center for autopsy.
b.) The funeral director may charge an additional fee for this service.
4.) If your family member is in a nursing home or a long-term care facility,
the staff and administration should be notified of your intention to have an
autopsy performed.
5.) Give a copy of the emergency telephone numbers to all concerned family
members, the funeral director and the nursing home or long-term care facility
(if applicable), so that the Indiana Alzheimer Disease Center can be notified
immediately upon death.
The following steps should be taken at the time of death.
- Notify the funeral service.
- Notify Francine Epperson (317-479-4982)immediately.
Q. How does the autopsy affect funeral arrangements? (top)
A. Funeral arrangements, including an open casket, will not be affected
by a brain autopsy. Under the supervision of a pathologist this procedure
leaves no apparent marks.
Q. How do I enroll in the Indiana Alzheimer Disease Center? (top)
A. An initial screening evaluation is necessary to determine eligibility;
this may involve a telephone interview, clinical appointment and/or
review of previous medical records. Once a person is found to be eligible
an informed consent form must be completed, signed and returned to the
Indiana Alzheimer Disease Center along with a signed autopsy consent
form and a signed release of medical records if applicable. An initial
examination will then be scheduled. Call Elizabeth Way (317-278-3968)
for additional information or to inquire about eligibility for enrollment. |