Brain Donation

The brain donation program serves two purposes:

1. It provides a definitive diagnosis of the disease that caused the dementia.
2. It maintains a resource of stored brain tissue for distribution to scientists investigating Alzheimer’s and other diseases that cause dementia. The ultimate goal is to find a cure for future generations.

Brain donation is exceptionally valuable when participants are followed longitudinally, with the same tests every year. This tells scientists how brain functions (such as memory, visuospatial abilities and executive functioning) change over time. This allows us to compare symptoms to brain pathology found after death to understand the aging brain and diseases that cause cognitive decline.

Brain tissue from well-studied individuals is indispensable for scientists investigating cells and molecules in the brain related to disease. Each brain contains enough tissue to facilitate hundreds of research studies, including those that lead to the development of new drug treatments. Brain donation is a selfless gift that allows patients and their loved ones to provide a gift of hope to future generations.

Alzheimer’s disease progresses differently for each person, and even more variability can be found in other diseases that cause dementia such as frontotemporal lobar degeneration. Thus, the symptoms a person experiences can be caused by several different diseases, not just one. Brain donation provides the definitive diagnosis of the disease that caused the dementia.

Brain donation is especially important for individuals from understudied groups such as African-Americans and Latinos. Alzheimer’s disease affects African-Americans and Latinos at a higher rate than Caucasians. However, despite this fact, participation in brain donation is lower among individuals from these groups. Receiving brain tissue from participants of color will therefore help scientists to better identify how Alzheimer’s disease and other dementias uniquely affect them.

Analysis of brain tissue has contributed to the following discoveries:

• Tau is the protein that exists in the neurofibrillary tangles that cause Alzheimer’s disease.
• ABeta Amyloid is the protein that makes up the neuritic plaques of Alzheimer’s disease.
• The tau in Alzheimer’s progressively moves from one brain region to another in a characteristic pattern.
• Pick’s disease is caused by abnormal tau that is moleculary different from the type of tau that causes Alzheimer’s.
• In 2006, we discovered TDP-43, a type of protein that causes one of the forms of frontotemporal lobar degeneration.

Brain donations are accepted from participants who are followed annually in the Alzheimer’s Disease Core Center study at Northwestern. The study follows individuals who have been diagnosed with a dementia as well as those who do not have cognitive impairment. Unfortunately, we do not accept brain donations from individuals who are not enrolled in the study.

Yes. It is important to study the brains of individuals who do not have cognitive impairment. Cognitively healthy brains are equally important to research because studying healthy brain tissue helps to identify the changes in the brain that are associated with normal aging and those specifically associated with Alzheimer’s disease and related diseases.

In order for scientists to best understand the causes of dementia, information about the donor’s memory and thinking abilities over time is necessary. For example, if a person maintained normal memory scores for five years and then experienced a decline in memory or thinking before death, the causes of the change could be identifiable in the brain. Without this information, the scientist cannot draw conclusions about what is found in the brain and its relationship to cognitive health or disease.

The brain removal is performed by skilled professionals in a designated facility. The removal does not disfigure the head. 

After removal, the brain is prepared for research. A set of processes is conducted to determine the disease that caused the dementia, including Alzheimer’s disease, Pick’s disease and Lewy Body disease. This is done by adding chemicals that show different types of abnormalities in the cells. 

Another set of processes is done to store the brain tissue for future uses by scientists. The stored tissue is preserved in a carefully controlled environment at the Northwestern Brain Bank. When an approved scientist requests tissue, the requested material is prepared and sent to the scientist. We ask scientists to report on their progress annually so that we can track how this precious resource contributes to science.

The identity of each donor is strictly confidential. Donor names are not included in any information sent to scientists. All distributed samples are coded in order to protect the donors' anonymity and privacy.

Research funding covers the costs of the brain autopsy and also covers the costs of transportation to and from Northwestern Memorial Hospital, and other designated locations, if outside of Chicago.

The consent for brain donation is governed by state law. In Illinois, only the persons indicated below, in the order of the listing, have the authority to give such permissions. For example, if there is a surviving spouse and no other healthcare power of attorney, only that surviving spouse may sign or give consent. Where two or more persons have equal right to give permission for brain donation, the authorization of only one is required. If, however, any one of the persons in this class objects to the brain donation, it will not be performed. Because legal consent for brain donation is captured after the time of death, it is not possible for donors to provide sole consent for brain donation.

1. Agents under a durable power of attorney for healthcare (unless power of attorney form specifically excluded brain donation)
2. Surviving spouse of the decedent, even if estranged or separated (if divorced, the surviving spouse is NOT authorized to sign)
3. An adult son or daughter of the deceased
4. Either parent of the deceased
5. An adult brother or sister of the deceased
6. Other adult relative
7. The executor in the decedent's will, but only where the will authorizes the executor to dispose of the body

It is desirable for brain donations to occur within 24 hours of death, whenever possible. In general, the donation process does not affect final arrangements. If you are planning on having an open-casket funeral or viewing, the procedure does not alter the physical appearance of the donor. The brain donation is performed carefully and will not leave any visible indication of brain donation. We encourage families to discuss their intentions for brain donation with the final funeral home or crematorium chosen by the family.

Most religions allow and support brain tissue donation. However, religious beliefs may influence attitudes toward brain donation. Ultimately, the decision to become a brain donor is a personal one. We encourage you to discuss the decision with your religious leader or spiritual adviser if you need additional guidance in your decision to donate or have any questions.

Donors are encouraged to have a discussion with family members or significant others about their wishes for brain donation. This ensures that those who will give the final brain donation consent at the time of death are willing to carry out the donor’s wishes and willing to notify us at the time of death. Your family and loved ones should be provided with information about the donation process so they know what to do when the time comes. Making preparations far in advance ensures that the procedure runs smoothly and does not create additional stress at the time of death.

Notify your primary care physician of your intent for brain donation so that in the event that information is required, they will be aware of your decision.

If you know which funeral home or crematorium you will use at the time of death, notify their staff of your decision. This will facilitate the transportation for the brain removal and make sure that funeral arrangements are not delayed.

If you are intending to make a whole-body donation, separate arrangements will need to be made through another organization. Most whole-body donation programs serve students learning about human anatomy as part of their medical education. Neurological research is a separate focus on diseases and disorders of the brain and central nervous system. Scientists who utilize research samples from brain banks are specifically investigating causes and characteristics of these disorders to help prevent, diagnose, treat and eventually cure neurological conditions. Organ donor designation on your driver’s license does not include brain donation for research. Separate registrations for both organ donation and brain donation should be completed, if you intend to donate both. When both brain and body are donated, our staff will communicate with the organ donation recipient to make sure the brain removal is done prior to other donations.

Anatomical donations to Northwestern University and Feinberg are arranged by the Anatomical Gift Association (AGA) of Illinois. The AGA has been formally charged with the procurement, preparation and distribution of bodies donated for medical study on behalf of all medical schools in the State of Illinois. The first priority of the AGA is to provide remains for the anatomical education of medical and dental students and students in allied health programs. Remains also are provided for training on new surgical procedures. For more information on the AGA and the donation process, visit the website or contact them at 312-733-5283 or info@agaillinois.org.

1. Participants enroll into the Alzheimer’s Disease Core Center study and agree to brain donation.
2. Participants and/or family members will need to sign a form stating their intent to fulfill brain donation. This is not a legally binding document nor a formal consent form.
3. At the time of the donor’s death, a family member, hospice coordinator, social worker or nurse should call our 24/7 brain donation phone number at 773-495-2982.
4. The brain donation coordinator on call will dispatch a designated transport service to transport the donor to Northwestern Memorial Hospital where the brain donation is performed.
5. The transport service will return the donor to the location designated by the family for final arrangements.
6. The brain tissue at other medical data and measurements will be used in determining the final diagnosis. Occasionally, additional analysis with external experts may be required for diagnosis, which can cause a delay in completing the autopsy. 
7. The donor’s family will receive a brain autopsy report two to three months after the donor’s death. A staff clinician is available by phone to answer any questions regarding the report.

1. Participants enroll into the Alzheimer’s Disease Core Center study and agree to brain donation.
2. Participants and/or family members will need to sign a form stating their intent to fulfill brain donation. This is not a legally binding document nor a formal consent form.
3. Our staff will locate a resource close to the donor’s home that can perform the brain removal and prepare the brain to be shipped to Northwestern. In the event that no such resource can be located, it may not be possible to comply with the donor’s wish for brain donation.
4. Our staff will also contact the family’s designated funeral home or crematorium to make arrangements for transport of the donor to the brain removal site. It is likely that our staff will contact the funeral home or crematorium prior to death to ensure a smooth transportation.
5. At the time of the donor’s death, a family member, hospice coordinator, social worker or nurse should call our 24/7 brain donation phone number at 773-495-2982
6. The transport service will return the donor to the location designated by the family for final arrangements.
7. Those who performed the brain removal will ship the brain to our center approximately two weeks after it has been removed.
8. The brain tissue and other medical data and measurements will be used in determining the final diagnosis. Occasionally, additional analysis with external experts may be required for diagnosis, which can cause a delay in completing the autopsy.
9. The donor’s family will receive a brain autopsy report two to three months after death. A staff clinician is available by phone to answer any questions regarding the report.