Brain Donation

The Importance of Brain Donation

There are several different degenerative diseases that have been associated with the clinical syndrome of Primary Progressive Aphasia. The only way to specifically determine which of these diseases is the cause of the symptoms is to examine brain tissue. A brain autopsy remains the only accurate way to ultimately determine the cause of PPA.

Brain donation at the time of death is one of the most important and generous gifts a patient with PPA and his or her family can give.

• Autopsy provides definitive confirmation of the diagnosis for families.
• Autopsy provides priceless tissue to researchers for anatomic, pathologic, molecular, genetic and neurochemical studies.
• Major contributions to our understanding of these tragic diseases may come from even single case studies.

Brain autopsy for a loved one is a decision that family members can make only after thoughtful consideration. The decision has important emotional and practical implications. Members of the professional staff in the Memory Disorders Research Core are available to talk with you about this matter and can answer any questions you might have.

The bereavement period is not the optimal time to begin thinking about an autopsy. The time to start thinking about autopsy is now, even though your loved one’s death may be years away. Early discussion avoids the additional stress of such decisions at the time of death. Family members may have different views on brain autopsy, which should be expressed in an effort to reach some agreement. Your decision may be influenced by a variety of factors, including:

• A relative’s wish to have as much information as possible about a loved one’s medical condition. Neurodegenerative diseases can only be diagnosed with 100% certainty through an autopsy.
• Concerns about genetic factors. If other family members develop PPA or other forms of dementia in the future, confirmed diagnosis of previous cases is important, especially if treatment becomes available.

Some common misconceptions about brain donation

1. The body will be disfigured. This is the most common misconception. You will be able to have an open casket funeral if you choose.
2. The funeral will be delayed for many days. This also is not true. The body will be returned to the funeral home within several hours after the autopsy.
3. Most religions are against brain autopsy and tissue donation. It is a fact that none of the major religions absolutely prohibit an autopsy.
4. A person will not receive proper care in the hospital if his/her wish to undergo an autopsy is known. Actually, patients will receive optimal health care services whether or not they have agreed to an autopsy.
5. There is a cost to family members for doing the autopsy. In fact, all expenses related to the autopsy will be covered by the Northwestern Alzheimer's Disease Center for patients of the Center.
6. The brain tissue will be discarded after the autopsy is completed. Brain donation is considered one of the most valuable contributions one can make. After the diagnosis is completed, the remaining brain tissue is carefully preserved for future studies. It is this stored resource of tissue that allows us to support numerous research studies carried out by Northwestern investigators regarding the causes of dementia.

Related Information

Brain Endowment

Introduction to PPA

Diagnosis

Treatment

For Family and Friends

Resources

Visit our Volunteer For A Study page. If you would like to participate in a research study and/or clinical trial, please contact us at 312-908-9023 or by e-mail at CNADC-Admin@northwestern.edu