1. Who should get a brain autopsy and why?
A brain autopsy is the only definitive way to diagnose Lewy body dementia. Anyone who desires confirmation that a clinical diagnosis was accurate should arrange for a brain autopsy to be done soon after the time of death.
Making a brain donation is another route to confirming the clinical diagnosis was correct. Brain donations provide researchers with essential materials needed to learn what causes LBD, to improve our ability to diagnose the disorder and to pursue treatments and a cure. A single brain donation provides enough samples to support diverse studies, extending the impact one person can make on advancing research.
2. Will an autopsy or brain donation delay the funeral or disfigure the individual’s face?
No, an autopsy or brain donation does not delay the preparation of the body for burial. The physician who performs the autopsy, called a pathologist, will remove the brain through an incision in the back of the head. That leaves the face entirely untouched during the procedure, allowing for an open casket viewing if desired.
3. Where are brain autopsies performed?
Most major university and hospital programs can confirm a diagnosis with a brain autopsy. If there is not one in your community, ask your physician or local hospital for referral to an appropriate resource. (If the brain is being donated to research, you will need a board-certified neuropathologist, because preparing brains for research purposes requires a higher level of expertise than one examined during a routine autopsy.) Brain autopsies must be arranged in advance in order to provide legal authorization for the autopsy and give prior notification to the treating physicians, hospital, and/or long term care facility so that the brain harvesting can be done shortly after time of death. Depending on your hospital, having a brain autopsy may also have expenses that must be paid by the family for brain harvesting or transportation.
4. Who should donate their brain to research?
Brain donation is the ultimate gift and may provide researchers with information to better understand LBD. People with LBD, their family members, and the general public should seriously consider brain donation.
5. How far in advance do I need to plan the brain donation?
Families are encouraged to participate in research studies years in advance of making a brain donation, in order to assure a complete diagnostic work up is performed in a specialty setting.
Apart from research studies, individuals (or a family member of someone unable to make their own arrangements) can contact a brain registry organization to sign up weeks, months or even years in advance. If necessary, a person can be registered quickly if death is imminent. The Brain Donor Project and the Brain Support Network are two such resources.
6. Is there a cost to making a brain donation?
Depending on the brain bank chosen to receive the brain, there may or may not be a cost to the family.
Some research studies include a brain autopsy in the protocol. There would be no cost to the participants' families for the brain donation as part of the study; funding is provided by the study sponsor. You can find studies who are actively recruiting participants on LBDA's website. or at ClinicalTrials.gov. If there are no clinical trials near you, the next step is to contact a brain donation registry.
Brain donations to the National Institute's of Health (NIH) NeuroBioBank do not have a direct cost to the donor or family; funding is provided by NIH. The Brain Donor Project is the brain donation registry for NeuroBioBank.
- Brain donations to other brain banks at academic medical centers may have a cost involved, but this is not always the case. NOTE: In many cases, brain banks require the donor to be a patient in their medical system to accept the donated brain.
7. What information will be needed for brain autopsy or donation?
The brain bank or brain registry will provide all necessary instructions and documentation required to make a brain donation.
The best donated brains are those that come with the medical records from a comprehensive work-up and treatment by a specialist. Provide any clinical records based on evaluations by neurologists, psychiatrists, neuropsychologists and brain imaging tests. Without those records, the autopsy will not be able to determine whether the individual had Lewy body dementia that included parkinsonian symptoms or Parkinson’s disease that later developed into dementia. Specialty evaluations are most helpful when they begin early and run throughout the entire course of the disease process. Families can have very good historical records that they personally documented at home to describe the disease progression.