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?
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.
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 it to the Autopsy Coordinator.
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 the Indiana Alzheimer Disease Center (317-274-1590) 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 Christina Brown (317-963-7426) for additional information or to inquire about eligibility for enrollment.