Q: Why is brain donation important?
A: Direct examination of brain tissue is the only way to definitively diagnose the type of dementia that a person with memory impairment has been afflicted with.  The information gained through this program is leading researchers toward a greater understanding of these disease processes and to the discovery of potential effective treatments for them.

Q: Is brain tissue donation of value from individuals without memory impairment?
A: Yes.  It is extremely important to study the brains of those individuals who do not have Alzheimer’s disease or other dementias.  Brain donation from normal elderly persons allows researchers to determine the exact changes that are related to Alzheimer’s disease and other disorders and which changes are related to normal aging.

Q: Should I inform my next-of-kin of my decision to become a donor?
A: Yes.  We encourage you to discuss your interest in this program and urge your family members to call our coordinator, Lynne Leung, at 212-263-6262 to discuss any questions or concerns.

Q: What will my family have to do?
A: At the time of death, the program coordinator must be contacted.  During regular business hours, the direct phone number is 212-263-6262.  Any other time, or if you have left a message on the voicemail and not heard from anyone, please page the on-call coordinator at 917-321-6424.  At this time arrangements will be made to have the procedure done after obtaining consent from the family. 

Ideally, the next-of-kin will already have a blank copy of the consent form or it will be on file at the nursing home or assisted living facility (when applicable).  If this is not the case, one can be emailed or faxed.  A copy is immediately faxed to 212-263-6991 (also to the facility performing the procedure) and the original, signed copy must be mailed to us ASAP.

To help avoid possible problems or questions that may be encountered by family members at such an emotional time, it is recommended to coordinate preliminary arrangements whenever possible.  We advise you to speak with your family about your interest in this program, request additional information from us for them if they require it and always feel free to call with any questions or concerns. 

Q:  Will funeral arrangements need to be altered?
A:No.  Brain donation does not interfere with traditional or religious funeral arrangements. The procedure takes approximately 2 hours to complete and does not cause disfigurement that would prevent an open casket funeral.

Q: Can family members also become brain donors?
A: Yes!  As a relative of an individual with Alzheimer’s disease, your brain tissue is very important for comparative studies.  Ideally, your family member should have an evaluation done at the NYU ADC also.

Q: What if I change my mind and no longer wish to donate?
A: If you change your mind about participation in our Brain Donation Program, simply let the coordinator know and your name will be removed from the database.

Q: Will the results of the examination be available?
A: Yes, the family is provided with a copy of the final neuropathology report and invited to come to speak with our neuropathologist to discuss questions and concerns generated from the information provided.

Q: Will there be any cost?
A:  If the donor had previously been evaluated here at NYU ADC, no costs other than those typically associated with funeral arrangements will be incurred by the family.

Q: Can I still participate even if I move out of New York?
A:  Participation in this program does not have to change if you move from or live out of the New York area.  Arrangements can be made to have the brain donation procedure done in a hospital or facility close to where you have relocated. 

Q: How does this work?
A: The NYU Brain Donation Coordinator can facilitate this by identifying a qualified facility near your new home that can do the procedure. 

Q: What if the donor has never been evaluated at the NYU ADC?
A: Potential participants that have not been evaluated at our center are welcome to enroll in our Brain Donation Program.  Understanding the medical history of the participant, including medications, dates of significant medical events and diagnoses/history pertaining to memory loss is important.  Doing so requires the help of the family in gathering relevant documentation from medical personnel directly involved in the potential donor’s care.  The coordinator can guide you/your family through this process.   

For donors that have not been evaluated at our facility, the cost of the procedure itself is incurred by the family. The procedure fee varies depending upon the facility and is approximately $500. If it is possible to have the procedure done here at NYU, that cost will be covered by our program.