@A myALZteam Member: The NIA website states that the family can request a summary of the autopsy findings, which often provides some definitive answers to family members. This could be a very good thing. And the procedure is done carefully, so open-casket viewings can still be done, if desired.

Mentioned Users

A myALZte...

@A myALZteam Member: I think it's great that you're doing that, and I agree that the most important thing is that autopsy report, no matter how long it takes. I'm planning to donate my son's brain for TBI research, and am thinking about the Alzheimer's research aspect in regard to my husband. Ours is a second marriage, so we don't have children together, but he does have 3 children (including one who's also a doctor), who may want information. However, I wouldn't want to send someone into depression, so I would never give this information to anyone who doesn't specifically want it.

Mentioned Users

A myALZte...

@A myALZteam Member: You can click on the link that says "Brain Donation: A Gift for Future Generations" to get information on brain donations and centers in each state. The brain is an organ, so I suspect that if someone has consented to organ donation, this would be included in that consent; and I suspect the person with the Power or Attorney or Healthcare Proxy/Advanced Directives can probably consent in any case, upon death. (But laws can vary by state.)

Mentioned Users

A myALZte...

Thanks for the information. I think it would be great if John's brain could help in the research. I'm going to look into it. John wants to be cremated so if it's possible it wouldn't matter re: body integrity for burial. I'm John's POA and we have living wills consistent with this decision.

5/24/2025 Update: This week, my son (who sustained a Traumatic Brain Injury and has Vascular Dementia resulting from that injury) became a participant in a research study called "The Late Effects in Traumatic Brain Injury (LETBI)" at the Brain Injury Research Center at Mount Sinai School of Medicine in New York.

This study aims to increase the understanding of chronic traumatic encephalopathy (CTE) and other late effects of traumatic brain injury. In connection with his participation in this study, he has consented to end-of-life brain donation, which I (as his Healthcare Proxy and Power of Attorney) am in agreement with. I'm very proud of him for doing this.

Tagging my "thinking buddy" @A myALZteam Member, as we have previously discussed the encephalomalacia that has also resulted from his injury.

Mentioned Users

A myALZte...