In 2000, when neurologists at the local Memory Disorder Clinic diagnosed our mother with the “probability” of Alzheimer’s (AD) and vascular dementia, we were told that the only definitive way to confirm that diagnosis was to have an autopsy done on her brain. While the diagnosis of AD is about 90% accurate, it can only be positively confirmed through a brain autopsy. A brain autopsy is the study of tissue removed from the brain after death. No other body organs are autopsied unless specifically requested. Shortly after Mom’s death in 2006, my siblings and I discussed this option. We all agreed to proceed as we wanted a confirmation of the diagnosis one way or the other.
A brain autopsy will not complicate the family’s plans for a funeral, cremation, or burial and will not interfere with a family’s ability to have a viewing. The funeral home we chose for Mom’s funeral arrangements helped us a great deal. The funeral director gave me the name and contact information of a local pathologist, now deceased, who had a laboratory to conduct the autopsy. The pathologist needed to have access to mom’s body at the mortuary within a few days from her passing, before the embalming would take place.
The Autopsy Procedure
The autopsy was scheduled for July 3, three days following Mom’s death. The pathologist removed her brain through an incision at the back of her head just behind and above the ears. Her face was left untouched and there was no apparent disfigurement. The procedure involved sending ten slices of sections of Mom’s cerebral cortex (8) and cerebellum (2), along with the pathologist’s findings to the Armed Forces Institute of Neuropathology in Washington, D.C. for its evaluation and second opinion. I signed the necessary papers and paid the fee. I read recently that some private pathologists, medical centers and funeral homes charge between $1,000 – $1,500 for harvesting, transporting and examining the tissue. If the autopsy is done within a research study, typically the family will not be charged.
Within ten days, the pathologist called to tell me he had received the report from the Institute’s lab, and would send a final written report for the family. He discussed by phone, that both he and the Institute’s lab staff found evidence that Mom did indeed have Alzheimer’s.
This is what the final report indicated:
1) Her brain weighed 1150 grams, or about 2.53 lbs. The average healthy female brain weighs about 3 lbs.
2) There were no tumors, and no sign of Lewy bodies which might indicate Parkinson’s disease.
3) The cerebral cortex areas showed frequent neuritic plaques.
4) Neurofibrillary tangles were noted.
5) The blood vessels showed atherosclerosis. This condition is a hardening and narrowing of the arteries in which plaque builds up inside the artery walls. However, the arteries at the base of Mom’s skull showed no atherosclerosis.
The accumulation of amyloid plaques and tau tangles are abnormal protein deposits. Research investigators still cannot confirm just how much these deposits contribute to Alzheimer’s disease. However, their presence is a sign of Alzheimer’s.
According to criteria published by CERAD, the Consortium to Establish a Registry for Alzheimer’s Disease, Mom’s brain samples indicated an age-adjusted plaque score of “C,” a diagnosis of definite Alzheimer disease, which in all likelihood manifested itself eight years prior to Mom’s death. Mom’s diagnosis was six years prior to her death at age 88.
A Family Decision
My siblings and I were in agreement to have a confirmed diagnosis through a brain autopsy. It gave us a sense of closure. It was an important part of the grieving process. Having this information now will also help our families to be on the lookout to determine the likelihood of Alzheimer’s, in case family members begin to exhibit early signs of the disease in the future. Other than advanced age, having a family history of Alzheimer disease is the biggest risk factor for developing this disease.
Religious and Cultural Considerations
According to the Alzheimer’s Society of Ottawa and Renfrew County, “In some religions or cultures, the body must be “whole” when buried. Families can request that the brain be returned to the body for burial purposes. In this case, only small specimens will be retained for processing and future diagnosis. This is not the optimal method for diagnosing Alzheimer’s disease, and the final diagnosis may not be as definitive, but it offers the opportunity for those with religious considerations to obtain a post-mortem diagnosis.”
Steps to Take
- The Need to Plan Early
Timing is a critical factor for a brain autopsy to be conducted, ideally within six to forty-eight hours after death. Therefore, begin the discussion with your family members early on when it has been determined that your loved one has dementia. Explore their questions and wishes. Your neurologist may be able to help you determine the procedures needed and where the autopsy would be conducted.
- Persons Authorized to Give Consent
- The individual if mentally competent (verbal consent requires two witnesses);
- The legal next of kin in this order of priority: 1) The spouse; 2) If no spouse, any adult child (16 years or older); 3) Parent; 4) If no spouse, adult child, or parent, any adult sibling (16 years or older); 5) If no spouse, adult child, or adult sibling, any other next of kin (16 years or older) such as grandchild, nephew/niece, uncle/aunt;
- If no available next of kin, the person lawfully in possession of the body for burial and who is knowledgeable of the person’s preferences and values;
- The coroner.
3. Pre-arrangement and Legal Authorization Is Required
All states require a signed authorization, so there will be forms to complete and signatures required. Enroll in a program through a brain bank, university, medical school or hospital where research is conducted. This makes the process easier. Specific advice will also be given on how to make final arrangements. The registration process can take approximately six to eight weeks or longer.
A brain autopsy is often done in conjunction with donation of the brain for scientific research. As mentioned earlier, if an autopsy is done within a research study, there may be the possibility that the autopsy would be done at no cost to the family.
Copies of the authorization forms should be given to all medical professionals who care for your loved one to keep on file. A nursing home, assisted living facility or hospice program will also need a copy if your loved one resides there.
- Coordinate with a Funeral Home
Select a funeral home to initiate discussion and plans for the autopsy. Since it is important that a brain autopsy be done shortly after death and before embalming procedures begin, the funeral home will need to carry out your family’s wishes in this regard. They will also likely need a copy of the authorization to keep on file. At the time when the death of your loved one takes place, the funeral director will likely ask for a verbal confirmation before proceeding.
- Final Report
Families can expect to receive a final report within a reasonable amount of time.
A Gift to Medical Research
A brain autopsy is one of the best ways of knowing what goes on in the brain. A brain autopsy is the only definitive way to diagnose the forms of dementia: Alzheimer’s, Lewy body dementia, and frontotemporal degeneration (FTD).
Families may not only choose to have a brain autopsy, but also decide to donate the brain for medical research. A brain donation is the ultimate gift. It will not provide information about family members’ risk of developing the disease, but it will assist researchers who seek answers to the many questions regarding Alzheimer’s disease and other age related diseases of dementia find a cure. We can only hope that answers and a cure to combating these diseases of dementia come soon!
I wish you peace, patience, joy, and compassion in your caregiving today and every day!
* * *
A segment of the above article was taken from Chapter 18 of my memoir, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion. The book is available for sale through this website.
* * *
The Alzheimer’s Association Autopsy Assistance Network has a good handout that answers questions about brain autopsies. You can check it out here: http://www.alz.org/alzwa/documents/alzwa_resource_eol_the_alzheimers_asso_autopsy_assistance_network.pdf.
* * *
Here is a five-minute video, courtesy of the Manchester Brain Bank, showing a brain dissection and the difference in how a normal brain looks compared to a brain of a person with Alzheimer’s: https://youtu.be/cqmZFoGvzfU.
* * *
The Association for Frontotemporal Degeneration has helpful information about brain autopsies on their website: http://www.theaftd.org/life-with-ftd/participate-in-research/autopsy.