Hi Everyone,
My mom died last December with a diagnosis of Alzheimer's disease. My sister and I sat down with my mom's UCSF neurologists to walk through her brain autopsy report, and we recorded the conversation so other families could see what these results can actually tell you. Sharing it here in case it's useful to anyone navigating dementia in the family.
What we learned: my mom had three dementias in her brain — Alzheimer's, vascular dementia, and TDP-43 (a protein linked to a condition called LATE, short for limbic-predominant age-related TDP-43 encephalopathy). The part that floored me was when her neurologist told us 90% of the brain autopsies he reviews show more than one type of dementia. Scientists still don't know whether neurodegeneration starts as multiple overlapping processes or whether the diseases converge over time.
For background, I'm a journalist and run beingpatient.com, an independent site covering dementia and brain health. I am writing here as a daughter and caregiver too. Donating my mom's brain and making her results public felt like the most honest thing we could do. Brain donation is one of the few ways researchers can study what's actually happening, and there's still so much we don't understand about how these diseases co-exist.
Full conversation here if you want read or view it: https://beingpatient.com/alzheimers-brain-autopsy-ucsf-neurologists-conversation/
Happy to answer questions about the autopsy process or brain donation if anyone's considering it for a family member.