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The Dementia Brain Autopsy Program has been developed to serve the needs of Illinois families and individuals affected by dementing diseases and to advance dementia research. A brain autopsy (also called a postmortem examination) is important for two reasons.
The SIU School of Medicine (SIU-SM) Dementia Brain Autopsy Program facilitates the postmortem process for families wishing to obtain an autopsy for a loved one.
Why a Brain Autopsy?
A brain autopsy provides family members with accurate information regarding the exact nature of their relative’s dementia. This includes information about the possibility of an inherited disorder which may affect other family members. The brain autopsy also helps clinicians improve their clinical skills by identifying the precise cause of the clinical dementia. Additionally, and perhaps most importantly, by providing tissue, research can be conducted to help understand these diseases, and may lead to an eventual treatment or cure.
Reaching a Decision
Reaching a decision regarding brain autopsy is different for each family. Some families decide to participate because they have previously discussed similar issues, such as organ donation in general, and are comfortable with the possibility. Others participate in a desire to contribute to science or to the research of this particular disease. Some families have more difficulty reaching a decision and may find it helpful to discuss the possibility with a physician or other health professional, support group members or a member of the clergy.
Whatever the decision, planning ahead allows families the time to make an informed decision and eliminates the need to address the issue at the time of death. You may contact your local SIU-SM Memory and Aging Network coordinator to ask questions about the program or to discuss concerns you may have.
1. Hasn’t a person with dementia suffered enough? Is it worth it to put them through anything more?
For some it may be difficult to consider the need for a postmortem brain autopsy, especially when it regards someone who experienced the burden of a dementing illness during their lifetime. However, upon reflection, it is apparent that such an examination causes no further suffering. In fact, it can be consoling to know that valuable information is being provided to those who survive.
2. Who grants permission for a postmortem examination for me or my loved one?
The consent for a postmortem examination is legally binding only when it is signed after death. In order of priority, the following persons, when available at the time of death, may provide such consent:
3. What exactly takes place?
After death, the brain tissue is removed without disfigurement to the donor. Tissue is then analyzed to determine and/or confirm the diagnosis for the dementia. Remaining tissue is stored and used for research. Donor names are kept strictly confidential.
4. Will the funeral arrangements be affected?
By pre-planning with an SIU-SM Memory and Aging Network coordinator and a funeral director, there should be no delays for typical funeral arrangements. The removal of the brain tissue does not cause any noticeable disfigurement, therefore, families may choose an open casket funeral, if desired.
5. Will other people have to know the brain tissue has been removed?
Aside from those giving consent after the death, other people do not have to know if you do not wish. The name of the person autopsied is not available to anyone other than the person’s physician and appropriate SIU-SM Alzheimer's Center personnel.
6. Can anyone participate as a donor in this program?
All donors must have been evaluated at SIU-SM or an SIU-SM Memory & Aging Network site, prior to death. Two kinds of donors are needed: 1) those who had symptoms of dementia and, 2) research volunteers who participated in the SIU-SM cognitive aging study.
People who have not been evaluated also may receive a postmortem examination from some hospitals; however in this case, all costs must be assumed by the family or the estate.
7. If I want to donate my brain, is there a way to ensure that my wishes are properly carried out?
Since consent must be given by next-of-kin after death, it is best to discuss your intentions with family members so that your wishes are understood and agreed upon.
Additionally, in Illinois, authorization for a postmortem examination can be included in a Durable Power of Attorney for Health Care, a document which allows you to designate someone to make decisions regarding your health care in the event that you are not able to do so for yourself. Using this document, you can opt to give your designated person the power to make decisions regarding after-death issues such as autopsy (including brain autopsy), organ donation and disposition of remains. However, it is best to discuss your intentions with your next-of-kin, even when you have included them in a Durable Power of Attorney for Health Care.
8. Are there any fees involved?
When autopsy is performed in Springfield, SIU-SM assumes responsibility for most costs including the actual postmortem examination. However, transportation by a funeral director to and from the hospital, if necessary, is a cost paid by the family or the estate.
When removal is performed outside of Springfield, additional costs may be incurred by the family or the estate. Usually these costs are not considered extreme but they can vary a great deal from one location to another. You should be aware of the fees in your area as you consider your decision about donation. Your local SIU-SM Memory and Aging Network coordinator can explain possible costs to you and can also help you to receive assistance if available in your community.
9. How long does it take to get the results of the postmortem examination?
This varies, but generally the family's physician receives a report from SIU-SM within 3-6 months following the time of death.
Additional information about the Dementia Brain Autopsy Program can be obtained by contacting the SIU SOM Memory and Aging Network coordinator in your area or by contacting:
Ann Jirmasek, MA
217/545-8417 during office hours or
217/545-8000 after office hours or on weekends
Brain Health Manifesto
by Ron Zec, PhD
"Staying Sharp" publications from Dana Alliance for Brain Initiatives
ASPECTS article on
by Deborah Allen