A brain autopsy can be emotionally difficult for families, and the topic may be a challenging one to consider. But there are several important reasons why a family should consider arranging for an autopsy upon the death of their loved one.
- To get a definitive diagnosis. Autopsy is the only way to make a diagnosis of an FTD disorder with 100% certainty. While the individual diagnosed with FTD is alive, the clinician uses the tools that are available (physical exam, CT, MRI scans, etc.) to make the most accurate diagnosis possible. But a pathologist must actually look at the affected brain tissue to see exactly what occurred in specific portions of the brain, and then assign a diagnosis.
- To provide information for family members. Because some FTD may be hereditary, the official diagnosis may have ramifications for first-degree relatives. With this pathological diagnosis in hand, a genetic counselor can have a much more productive and informed discussion with the next of kin about the potential implications and risks for family members. Identification of a genetic mutation, if it exists, can be important for other family members, particularly as potential treatments become available in the future.
- To gain a sense of closure. The complex nature of FTD’s symptoms and its devastation can leave families with many unanswered questions. Brain autopsy can provide a definitive pathological diagnosis and the latter may help family members to reach a closure after a long struggle. Brain autopsy is often done in conjunction with donation of the brain for scientific research, but is not limited to that context.
A distinct but related potential option for the family to consider – and a powerful way to inform FTD research— is brain donation.
How can you plan a brain autopsy?
Considering brain autopsy can be a very delicate matter. It is helpful to begin the discussion early when it is possible to gather information and explore family members’ questions and wishes without undue emotional stress or time pressure.
The following steps will guide the process, whether in a research study or not:
- Make the decision. The first step is to make the decision to have an autopsy performed. It is strongly recommended that family members have this discussion sufficiently ahead of time to ensure that everyone’s wishes are honored, paperwork is completed and all arrangements are made. The timing of these arrangements is critical: The autopsy needs to be carried out as soon as possible after death (preferably within six hours) to get optimal results. Once these factors are sorted out, the family will be able to focus on more important issues when the person with FTD dies.
- Find and contact a pathology program. There are many pathologists and medical centers that can confirm a diagnosis with autopsy, including individual pathologists, hospitals, and medical schools. However, it is recommended that you contact a medical center or brain bank with experience in neurological disorders – and, if at all possible, with FTD specifically. Ask your neurologist for a recommendation, or consult the website of the National Institute of Neurological Disorders and Strokes for a list of brain banks. Most of these programs are research-based, and the patient needs to be enrolled in the program ahead of time to qualify.
- Ask about costs. Private pathologists, medical centers and funeral homes may charge for harvesting, transporting and examining the tissue. If autopsy is done within a research study, the family will usually not be charged. If done through a neurodegenerative disease brain bank, some but not all costs may be covered.
- Carefully review and sign the forms for pre-arrangement of autopsy. Legal authorization for autopsy by the next of kin is necessary at the time of death. Because timeliness is so critical, some programs may keep your signed authorization on file and have an additional procedure for telephone authorization at the time of death.
- Select a funeral home. Coordination with the funeral home is important for a timely response after death. It can also ease the burden on family members if arrangements are made ahead of time and your plans are clearly communicated. Select a funeral home ahead of time so you can ask questions and share your wishes. The autopsy will not delay the funeral and will not disfigure the body, even in an open-casket setting.
- Inform caregivers. Once the forms are signed and arrangements are made, make sure your physician, the nursing home (if applicable), and the funeral home understand your wishes. Give them copies of the instructions and legal forms.
What happens after the autopsy?
Approximately 3-12 months after the autopsy is performed, the family will receive a final written report, which will include the official diagnosis and detail anything else that was learned. The report is presented in technical, medical terminology. It should be shared and discussed with the person with FTD’s physician to ask questions and to ensure understanding.
Because of the complexity of FTD, it is not unusual that the official pathological diagnosis may differ from the clinical diagnosis given during life. This can be disconcerting to families. You are encouraged to share the report with your neurologist for further clarification.