I am prompted to write this post in light of the recent passing of friends’ parents with dementia. Unfortunately, it can be a bit unclear how to sign up for brain autopsy while the patient is still alive AND the availability of autopsy services has changed with loss of funding for Alzheimer’s research, so please review the following:
- It is no longer true that you need an autopsy to be sure a patient had Alzheimer’s disease. With a knowledgeable historian that can describe just how a patient has changed over time and neuroimaging that has ruled out other causes, we can be sure something was Alzheimer’s.
- We can’t, however, be as sure with the non-Alzheimer’s dementias: let’s say your doctor started off with a non-Alzheimer’s diagnosis (e.g., behavioral variant FTD) but then the illness progressed soooooo slowly, we had to put Alzheimer’s disease back on the differential diagnosis list. Sometimes an autopsy can bring closure to a mystery case. Or if the patient progressed a lot more rapidly than we would have predicted, that would be another reason to make sure we know the diagnosis so that we can help your family understand whether there is any familial risk down the line.
- Whereas Alzheimer’s research centers throughout the US used to be funded to take whatever patients wanted to donate a brain, even if waiting to volunteer at the last minute (time of death), we are in a new era, where the guidelines follow the money-saving mandate that a patient has been followed at one of the academic dementia care centers over time so that there are good pre-death records to correlate with the pathology findings. This holds true for Canada also and may always have been the case there.
- If you think you may want to sign up for brain autopsy, act sooner, rather than later. It is very hard to think straight once you are in the throes of the patient’s last hours of life.
- Start a relationship with a tertiary dementia care center if you don’t already have one and let the staff there know you’re interested in brain autopsy so that you can start filling out the paperwork. If you don’t want the autopsy done for free or don’t have an Alzheimer’s Disease Research Center near you, see Options B below
- “The paperwork” should not only include who the power of attorney or decision-maker will be at time of death, but also which physician should receive the report, where the patient is likely to be at time of death (long-term care facility name or your home?), and instruction to you (or long-term care facility manager) at time of death. Those Instructions at Time of Death should give you one hotline to call to get everything moving, as well as the tips on how the body should be handled between time of death and the autopsy itself.
- In general, you want to get the body cooled down asap. If cooled down sufficiently, the autopsy itself doesn’t have to happen for days. If there is no cooled storage at the facility where patient passes (hospitals typically have their own morgues in basement), transfer to the mortuary who will handle cremation or burial prep might be just the right interim solution.
- Some university neuropathology divisions offer 24/7 service; others are available only during bankers’ hours. The Instructions at Time of Death should help you know what kind of service is available. And accordingly, figuring out where the “frig” is ahead of time can make the difference between ultimate answers to diagnostic questions and a missed opportunity.
- Keep one copy of the Instructions at Time of Death handy and one copy at the patient’s facility on his/her chart right next to the Advanced Directive paperwork. If the facility is not in on the loop, they don’t know to cool the body down until they’ve finally reached next of kin.
- Options A: you can have the researchers look at “brain and spinal cord only” or the whole body. I don’t recommend just brain because some of the changes in the brain might indicate that similar pathology was also active in the spinal cord (TDP-43 deposition, changes of ALS).
- Options B: if you can afford to pay out of pocket for the autopsy (US$1800 for brain at time of this writing), you can specify to your local hospital that you would like to pay out of pocket for the transportation and autopsy at the time of death. My advice about cooling the body down immediately after death still holds. Caveat here is that not all hospitals have the resources to do the in-depth immunostaining and fancy searches for esoteric causes of dementia, so caveat emptor!
Here’s an example of one Alzheimer Disease Research Center’s info on this process.