Why is it important to have a brain autopsy?
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The autopsy is essential for both diagnosis and for research.
There is a particular need for autopsy tissue from well-studied patients with a variety of neurologic illnesses. The symptoms of different patients with Alzheimer's disease are not identical, and the changes in the brain tissue seen under the microscope vary from case to case. Comparison of a patient's symptoms with changes found in the brain tissue can lead researchers to a better understanding of memory loss and other problems experienced by patients with Alzheimer’s disease.
At present, the diagnosis of Alzheimer’s disease can only be made with certainty at autopsy by looking at brain tissue under the microscope. Other conditions can mimic Alzheimer’s disease during life. In addition, the brain autopsy is vital for research purposes. Because there is no good animal model for Alzheimer's disease, much information on the biochemical and molecular changes in the brain tissue is derived from autopsy studies.
Finally by providing definite diagnoses, autopsies provide valuable public health information on disease incidence to Congress and others whom make decisions regarding funding for health care services and research. (However, no personal or identifying information is released.)
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How will information gained from the brain examination benefit my family?
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Throughout the course of the illness, families and caregivers have dealt not only with uncertainty about the diagnosis but also with many stressful situations and emotional demands. Learning the precise cause of the patient's illness may be a tremendous relief to the family, helping you to close this chapter in your lives.
In the event that more than one family member has a similar illness, the autopsy may provide vital information to the family and their physicians about the disorder, which may be genetically determined. Other family members presenting similar symptoms in a similar fashion will often prove to have a similar disorder.
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How can a definite diagnosis of Alzheimer's disease be made?
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Until a reliable clinical test is found, the only definitive way to obtain a diagnosis of Alzheimer's disease is by having the brain examined after death. The pathologist examines the brain tissue under a microscope, looking for the characteristic hallmarks of this disorder, such as neuritic plaques and neurofibrillary tangles.
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Is it important to examine the brains of normal elderly individuals?
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It is extremely important to study the brains of normal individuals without Alzheimer’s or other dementias. As surprising as it may seem, we still do not know enough about what changes are found in the brains of healthy persons as they age. Without this information, scientists cannot determine precisely which changes in the patient's brain are related to disease and which are related to aging.
For this reason, we urge that the spouse, other family members, or friends of patients with Alzheimer's disease tell their family that they would like to have a brain autopsy examination upon their death. This information is particularly valuable if the participant has had formal neuropsychological testing on an annual basis.
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When should arrangements for an autopsy be made?
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Although patients with Alzheimer's disease may live for many years, families should think about autopsy early in the course of the illness. It is important to make the necessary arrangements well in advance. In addition, family members need time to discuss this issue and explore any possible disagreements before the death of a loved one. The patient's doctor, nursing home personnel (if appropriate) and the funeral home director should also be informed of the family's decision.
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Who can legally authorize an autopsy and when is this done?
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In Georgia, except in coroner's cases, the person assuming custody of the body for burial, such as the husband, wife, father, mother, child, guardian, next of kin (grandfather, grandmother, aunt, uncle, first cousin), or, in the absence of any of them, a friend of the deceased person may consent to the autopsy. If two or more persons assume custody of the body, the consent of one of you is sufficient legal authorization for the performance of an autopsy.
The autopsy can only be authorized at the time of death. This is done either by signing the Emory Authorization for Autopsy Form in person or by giving your consent by telephone to an authorized Alzheimer's Disease Research Center staff person.
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Is a brain autopsy sufficient for diagnosis?
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Yes. In most cases, examination of the brain will provide a definite diagnosis of the neurological disorder.
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Where is the autopsy performed?
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If the patient has been seen by Emory ADRC physicians and dies in the Atlanta area, the autopsy will be performed at Emory University Hospital by Emory Alzheimer's Disease Research Center staff and associates.
If the patient lives outside the Metro Atlanta Area and the body cannot be transported to Emory, the family will need to identify a local pathologist who is willing to do the autopsy and then send the brain tissue to us. The Emory ADRC Autopsy Coordinator can help you locate a pathologist in your area.
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What will the brain autopsy cost my family?
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For those patients seen or registered in the Emory ADRC Cognitive and Behavioral Clinics at Wesley Woods, or Grady Memorial Hospital, there will be no charge for the brain autopsy or neuropathological examination. If it is not possible to transport the body to Emory and it is necessary to have an outside pathologist remove the brain, a fee may be charged to you for this service.
In addition, you should check in advance with your funeral director who may charge you a fee for transporting the body to and from Emory Hospital.
For those patients who are not seen or registered with the Emory ADRC, a fee of $500 will be charged to cover the costs of brain examination.
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What effect will a brain autopsy have on funeral arrangements?
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A brain autopsy should not affect any of the funeral arrangements. It is still possible to have an open casket if you wish. The removal of the brain, under the supervision of a pathologist, does not leave any apparent marks.
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How will we know the results of the autopsy?
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We will forward copies of the autopsy report to the patient's physician who may call you with the results and to the family members you list on the Authorization to Release Autopsy Information form. The family may also contact the ADRC neuropathologist if they have any additional questions.
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How do I get the forms necessary to sign up for autopsy?
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Contact the Emory Alzheimer’s Disease Research Center Autopsy Coordinator at 404-727-3251.
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