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Brain Endowment
You Can Help Us Combat Dementia
We are asking for your help in the struggle against Alzheimer’s
disease and other dementia-causing diseases that often leave us
feeling helpless and frustrated as we witness the decline of a relative
or friend. Much more must be learned about these disorders before
effective treatments are discovered to prevent or retard mental
decline. Brain donation at the time of death is one of the most
important and generous gifts a patient with dementia and his/her
family can make. Brain donations from older individuals who do not
suffer from dementia are also critical for comparison with Alzheimer’s
disease.
- Brain autopsy provides definite confirmation of a diagnosis
of dementia, since there are many possible causes.
- Brain autopsy provides priceless tissue to researchers for anatomic,
pathologic and neurochemical research.
- Major contributions to our understanding of these tragic diseases
may come from single case studies.
Making the Decision
Brain autopsy is a decision that individuals and their families
can make only after thoughtful consideration. The decision has important
emotional and practical implications. Members of the professional
staff at the Cognitive Neurology and Alzheimer’s Disease Center
at Northwestern are available to talk with you and answer your questions.
The bereavement period is not the optimal time to begin thinking
about an autopsy. The time to start thinking about brain autopsy
is now, even though death may be years away. Early discussion reduces
the stress of such decisions at the time of death. Your decision
may be influenced by a variety of factors.
- Diagnosis -- At present, Alzheimer’s disease and other
forms of neurodegenerative dementia can only be diagnosed with
100% certainty through a brain autopsy.
- Concerns about genetic factors -- If other family members develop
dementia in the future, confirmed diagnosis of previous cases
is important, especially if treatment becomes available.
- Religious or cultural factors may influence attitudes toward
brain autopsy, and individuals may feel the need to consult with
religious leaders in their community.
- Benevolence -- Brain donation often helps family members feel
that they have provided a gift of hope to future generations,
thereby diminishing the sense of hopelessness and despair.
Please consider that we are not able to accept every donation.
If the patient was never seen as part of research or for a clinical evaluation at Northwestern University’s Alzheimer’s Disease Center, it may be necessary for us to review the patient’s medical records to determine whether or not the donation would be appropriate for our research. Please call our office at (312) 695-2343 between 8am and 5pm, Monday through Friday, to discuss the feasibility of a brain donation.
Brain Autopsy
CNADC Brain Autopsy
Brochure (will download as PDF)
The clinical autopsy coordinator of the Northwestern
Alzheimer’s Disease Center, serves as the liaison between the
patient's family, funeral home, nursing home or hospice, and Northwestern
Memorial Hospital (NMH). When there is a brain-only autopsy, the
clinical autopsy coordinator is paged, usually by a relative of
the patient.
The coordinator contacts the Funeral Home, and facilitates
communication between the Funeral Home, family, and NMH Medical
Records to obtain permission for autopsy, and also assists in arrangements
for transport of the body to NMH for performance of autopsy (Monday-Friday,
9:00am-3:30pm; Saturday, Sunday, and holidays, 9:00am-2:00pm). Any
decisions concerning performance of a brain only autopsy at an irregular
hour will be made by Dr. Eileen Bigio, Director of the Neuropathology
Core and Brain Bank of the Northwestern Alzheimer’s Disease
Center. NMH Medical Records is responsible for notification of the
Autopsy Service (Monday-Friday) or pathology resident on-call (Saturday,
Sunday, and holidays) when there is a brain-only case. The coordinator
is responsible for providing the pathology resident performing the
autopsy necessary patient demographic and clinical history.
Evaluation of Case
Dr. Bigio and the pathology resident evaluate the case microscopically,
and a diagnosis is made. A Brain Autopsy Report is prepared, filed
with the Autopsy Service, and distributed to the Northwestern Alzheimer’s
Disease Center.
Storage and records
Brains are permanently stored, and requests for tissue for research
purposes are submitted to Dr. Bigio for review by the Northwestern
Alzheimer’s Disease Center. Records of tissue requests, further
studies, distributions, associated research projects, principal
investigator of associated research projects, and publications will
be compiled in the Neuropathology Core of the Northwestern Alzheimer’s
Disease Center.
For more information, contact the Memory Research team at 312-908-9023 or
email memoryresearch@northwestern.edu
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