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The Gift of Knowledge:  Brain Donation

First, let us examine the word autopsy.  "Autopsy" come from the Greek word autopsia, meaning to see with one’s on eyes.  Today researchers have made significant progress in developing accurate test to detect AD in living patients, the result is rendering a probable diagnosis for AD, an accuracy rate of 90 percent certainty in specialized research facilities.  However, AD can be diagnosed conclusively only by examining the brain after death revealing the characteristics of plaques and tangles that define AD.  An autopsy provides valuable information that can educate and enlighten families, physicians, and researchers, who are working to discover more reliable test for AD.

Information gained from autopsies is a vital part of the research conducted at the ADC supported by the National Institute of Aging (NIA).  The autopsy results of AD patients that are followed over time at an ADC are especially valuable. 

The Benefits of Autopsy

Families
Advancing medical knowledge often is cited as the most important benefit of autopsy.  Family members also may feel a sense of relief once they know the exact cause of death and that their loved one was giving appropriate care during his or her illness. 
Findings can help family members understand genetic risk factors that can be associated with AD and related dementias, and provide an opportunity for genetic counseling. 
Autopsy can provide family members and loved ones with a sense of closure to facilitate the grieving process.

To Researchers and the Medical Community
Autopsy provides an important quality control tool by confirming the diagnosis.  In AD clinical trials, autopsy results help researchers confirm that the people in the trial actually had AD and not some other dementia.  Autopsy results can also help researchers develop and test better and more accurate diagnostic tools.  Autopsies on non-demented persons and those in the early stages of AD can help scientist pinpoint the earliest signs of age-related brain changes and how they differ from brain changes in early AD.  Research of this type may lead to interventions that might help in the earlier stages. 

To Society
Autopsies provide more accurate disease rates of dementia, including vital statistics for state and national registries. Accurate diagnostic data from autopsy can provide information to those who advocate for laws and funding in support of AD patients and their families.  As a result, society as a whole may benefit by additional services designed to ease the burden caused by AD and related dementias.

Checklist for Family Members

  • Discuss the autopsy decision with all involved family members, physician(s), your religious leaders and or people in your support group.
  • Identify the patient’s legal next-of-kin.
  • Complete and sign the Consent to Remove Brain Tissue for Neuropathological Examination and the Autopsy Planning Form.  This will need to be signed by the patient’s legal next-of-kin.  Return these documents to the National Cell Repository for Alzheimer’s Disease.
  • Keep a copy of the consent form in an accessible place.
  • Give your family members and physicians a copy of the consent form.
  • Contact the funeral director and explain that you are planning a brain-only autopsy for your family member.
  • Notify the director of administrator, director of nursing, hospice nurse, and social worker of the nursing home or other institution of your plans for autopsy (if applicable).
    • You might consider giving them a copy of the Autopsy Planning Form to have on file.
  • Find out who you need to call at the time of death and how to reach the appropriate person during the daytime, evening hours, weekends or holidays.
    • Autopsy coordinator’s (Francine Epperson) emergency pager number:  317-479-4982.
  • If you have any questions about the autopsy arrangements, please call the National Cell Repository for AD at 1-800-526-2839

For further information regarding Alzheimer disease or the importance of autopsy, please contact:

National Cell Repository for Alzheimer’s Disease
Department of Medical Genetics
410 W. 10th Street, HS 4000
Indianapolis, IN 46202-3002

Phone: 1-800-526-2839
E-mail:


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