Why does the Bryan Alzheimer's Disease Research Center (Bryan ADRC) need brain donations from patients with dementing illnesses like (AD)?
The correlation between clinical symptoms, imaging studies and neuropathological results is an ongoing need in the study of memory loss and dementia. The clinical diagnosis of AD or other dementias can be confirmed only by postmortem neuropathological examination of the brain. Having definite diagnostic information may become even more important in families that have a family history of dementing illness. It is preferred that dementia patients be seen by one of our Memory Disorder Clinic (MDC) neurologists prior to enrollment.
Why does the Bryan ADRC need brain donations from people without AD?
Scientists need normal brain tissue for AD research. One barrier to understanding memory loss and dementing illnesses is a lack of non-demented (or control) brain tissue to study in order to understand what changes occur normally with age and what changes represent disease.
Does brain donation involve the entire brain?
Yes. The entire brain is retrieved and then examined by our neuropathologist. It is then placed in the Kathleen Price Bryan Brain Bank where it is available for approved research use.
Are their restrictions on who can donate?
The Bryan ADRC does not have any restrictions based on age. Due to the nature of our studies, we cannot accept brain donations from individuals with infectious diseases and from people with other neurological or psychiatric disorders.
Is it necessary for patients to be admitted to Duke Hospital before they die?
No. We find that most families prefer to remain in familiar surroundings during this difficult time.
What factors determine how quickly the brain is retrieved at Duke?
Family and staff circumstances at the time of death influence how quickly the brain is retrieved. While it is important to move as quickly as possible for brain retrieval, researchers are finding that it may be what happens during the dying process and the length of the dying process that most influences the quality of tissue for research use. Retrieving the tissue more slowly decreases caregiver stress, allowing more time for important family rituals like viewing the body.
Are there controllable factors that can improve the quality of tissue?
Yes. When possible:
1. Oxygen is routinely considered a common comfort measure during the dying process. The use of oxygen during the dying process in an amount that neither hastens nor prolongs the dying process seems to help delay decomposition of important genetic material or RNA.
2. Cooling the head prior to autopsy by applying ice during transportation of the deceased also helps to preserve the genetic material.
Can the family still have a traditional open casket funeral viewing if a brain autopsy is done?
Yes. A small suture line may be slightly visible in men and women who have receding hairlines or who are bald. The suture line is usually not visible if the funeral home uses a soft pillow.
Can the autopsy cause a delay in funeral or cremation arrangements?
Usually not, but there may be circumstances beyond our control. At Duke, we may delay an autopsy until the next day depending on the time of death. We usually do not do autopsies on major (national) holidays. Weather is always a possible complicating factor. The autopsy procedure at Duke is generally completed in one to two hours. Once the autopsy is completed, the body is released to the family's chosen funeral home or crematorium.
Is there a charge for autopsy?
There is no charge for a brain or full investigative autopsy and neuropathological examination done at Duke University Medical Center (DUMC) if the donor is enrolled in the Bryan ADRC Autopsy & Brain Donation Program. Pathologists retrieving brain tissue outside Duke often charge a retrieval fee that may not be covered by our program. The Bryan ADRC does not cover cremation or funeral charges. Funeral and cremation arrangements should be made well in advance of death. This will limit family confusion & stress at a very difficult time.
Who can give autopsy consent?
The immediate family should be in agreement regarding autopsy. The legal next of kin must give autopsy consent at the time of death. At Duke, the legal next of kin, in order of priority, is spouse, adult child, either parent, adult brother or sister or guardian. Consent for autopsy can be obtained over the telephone. An autopsy at Duke cannot be done without reconfirmation of consent by next of kin after death.
Does the family get the autopsy results?
Yes. If the autopsy for brain donation is done at Duke, it takes about two months for a copy of the results to reach the Autopsy & Brain Donation Nurse Coordinator's office. If the brain retrieval is done outside of Duke, it may take six months for the autopsy results. The family will be mailed the results as soon as possible.
What else is needed to enroll as a brain donor with the Bryan ADRC?
Control donors are asked to participate in a yearly memory assessment and have a “project partner”. Project partners will be asked questions about the participant’s day-to-day activities, behaviors and mood. Medical records are requested to provide an accurate medical history. Cell samples are obtained from a buccal (cheek) swab and/or a blood sample for genetic studies. A baseline neurological examination will also be performed. There will be no charges for these procedures.
How does someone enroll as a brain donor with the Bryan ADRC?
We are not currently enrolling participants in the Autopsy and Brain Donation Program. We continue to follow participants already enrolled and to retrieve tissue at time of death. For additional information, please contact our Autopsy and Brain Donation Nurse Coordinator. She is available to answer questions.