Brain Donation FAQ

faqBrain tissue is an essential part of the arsenal needed by researchers to find treatments and cures for neurological disorders. Not all brain banks are organized to support the process of brain donation. They excel at diagnosis, brain research, and brain storage—but are not focused on the nitty-gritty of organizing the paperwork, funeral home, and pathology specialist required to make brain donations happen. That’s where Brain Support Network can help.

Fundamentally, the generosity of the brain donor and assistance from the family are prerequisites to finding a cure. Such generosity helps us all. Following are the questions we are often asked about brain donation. Let us know if you have a question not answered below in the FAQ (Frequently Asked Questions).

 

1.  Brain donation vs. brain autopsy

1.1. What is brain donation? How is it different from brain autopsy?

Brain Support Network specializes in brain donation. Brain donation includes two aspects: (1) removal and analysis of the brain tissue (or, a “brain autopsy”), and (2) preservation and use of the brain tissue for research into neurological disorders.

The analysis of brain tissue determines what pathologies are present. A neuropathologist prepares a written report for the family providing a definitive diagnosis. Once the diagnosis is made, the donated tissue can be used for research that includes tissue of those with the same definitive diagnosis and/or the same clinical diagnosis. Brain Support Network’s mission is to help families with brain donation because such brain research helps us all.

 

1.2. What is brain autopsy?

The word “autopsy” refers to removal of something from a decedent and post-mortem analysis of whatever is removed. Usually the individual performing the removal is different from the individual conducting the analysis. In general, a qualified analysis can only be done by a pathologist. In the case of a brain autopsy, a qualified analysis should be done by a neuropathologist.

After a brain autopsy, the brain is destroyed, usually by incineration. It’s only with brain donation that the brain is preserved and utilized for future neurological research.

 

1.3. Why should you donate a loved one’s brain (or your brain)?

The two key reasons to donate a loved one’s brain (or your brain) are to obtain a confirmed diagnosis and to enable research into the causes, treatments, and cures for neurodegenerative disorders.

At least half of the families we’ve assisted have been surprised by the confirmed diagnosis. Depending on which neurodegenerative disorder someone is diagnosed with, the diagnostic accuracy can vary from 22% (“pure” dementia with Lewy bodies) to 86% (Richardson’s Syndrome type of progressive supranuclear palsy). Said another way, 78% of the persons diagnosed by a neurologist to have “pure” dementia with Lewy bodies are incorrectly diagnosed. And these are specialized “neurologists,” not general practitioners, who are doing the diagnosis.

The only way to obtain a confirmed diagnosis is through post-mortem tissue examination. From the donor’s viewpoint, this knowledge can bring peace of mind to children and grandchildren. From the family’s viewpoint, this knowledge can offer closure. While the confirmed diagnosis is of primary importance to many families, other families believe that enabling research is the ideal way to turn a sad situation into a positive. It can offer some positive thoughts during the grieving process. Enabling research into the mysteries of neurological diseases is key to finding the causes of these diseases, treatments for future sufferers of these diseases, and, ultimately, cures for these diseases.

Nearly all families report a wide sense of satisfaction at having finally done something to fight back against neurodegeneration. Some feel proud of their loved one’s generosity to the larger community. Brain donation is a gift to future generations.

 

1.4. What are common motivations for brain donation?

Brain donation may be especially appealing to those who:

  • Have received multiple, conflicting diagnoses, making the diagnosis uncertain, have received one diagnosis from a neurologist but the intended donor or family thinks this is an incorrect diagnosis,
  • Want to do whatever he/she can to support research for a cure for any neurological disorder,
  • Want to honor a family member’s battle with a neurological disorder, or
  • Want to do something to fight back against a neurodegenerative condition.

 

1.5. What tests can be done on a living person to confirm a diagnosis?

At the present time, no blood test, CSF test, imaging study, cognitive exam, or any biomarker test can confirm a diagnosis of what pathologies are in the brain. Researchers are getting close on some neurological disorders. In fact, the only way to confirm that a pre-mortem test is accurate is through post-mortem examination of the brain. As a result, brain donation will be needed well into the future to diagnose neurological disorders.

 

1.6. If brain donation is not possible, how can we still obtain a confirmed diagnosis?

If brain donation is not possible yet the family still wants a confirmed diagnosis, the only option is brain autopsy. For autopsy only, the brain will be destroyed (incinerated) after it is removed and examined. Ask your local funeral home or cremation organization if they can assist you in arranging a “private autopsy.”  The cost might be between $2K and $3K—higher in some places like New York state.  Ask which neuropathologist will be receiving the brain tissue and performing the analysis.  (In many cases, the analysis is done by a general pathologist, which we believe is not ideal.)  Ask how long it will take to obtain a report. Learn if there’s an opportunity to follow up with the neuropathologist and ask questions after receiving the report.

Sometimes major university medical centers will perform a brain autopsy at no or minimal charge to the family as long as the person has a medical record number from that medical center (or has been seen there previously). Again, the local funeral home or cremation organization may know about this. Or contact the autopsy department at the major university medical center. Often autopsies are only done Monday to Friday, 7am to 3pm, and are handled by pathology residents. Generally these are only done at the morgue of the university medical center. This means that the family may have to pay the funeral home or cremation organization for roundtrip transportation to/from the morgue.


2. Eligibility

 

2.1. What diagnoses are brain banks looking for?

Neurological diagnoses of special interest include:

  • Alzheimer’s Disease WITH a family history OR young-onset AD (diagnosed before age 59)
  • Amyotrophic Lateral Sclerosis
  • Autism
  • Chronic Traumatic Encephalopathy
  • Corticobasal Degeneration/Syndrome
  • Creutzfeldt-Jakob Disease
  • Dystonia
  • Epilepsy
  • Frontotemporal Dementia or Pick’s Disease
  • Huntington’s Disease
  • Lewy Body Dementia (also known as Dementia with Lewy Bodies)
  • Major Clinical Depression
  • Multiple Sclerosis
  • Multiple System Atrophy (also known as Shy Drager Syndrome)
  • Neurodevelopmental disorders such as Asperger’s Syndrome
  • Parkinson’s Disease
  • Posterior Cortical Atrophy
  • Primary Progressive Aphasia
  • Progressive Supranuclear Palsy
  • Restless Legs Syndrome
  • Schizophrenia
  • Tourette Syndrome

Brain banks are also looking for “neurologically-normal” donors. These “normal control” donations are very important for research as they demonstrate what “normal aging” looks like.

In effect, most brain banks seek to collect brain tissue representing diagnoses of all but the most common neurological disorders: Alzheimer’s Disease, Vascular Dementia, and undiagnosed dementia.

 

2.2. My loved one (or I) did not participate in any clinical studies or research. Is brain donation still possible?

Yes! Brain Support Network specializes in brain donation where the intended donor did not participate in clinical studies or research but brain donation is still desired.

A few brain banks around the US will accept brains from those who have not participated in clinical studies or research. It depends on the diagnosis. No matter what, the brain banks will need neurological records in order to utilize the brain for medical research.

 

2.3. I heard that brain banks no longer accept Alzheimer’s brains. Is this true?

Yes and no. Unfortunately it is true that the National Institutes of Health (NIH) are no longer funding Alzheimer’s brain donation through national brain banks. Reportedly this is because there have been lots of Alzheimer’s brains donated with poor clinical records such that this tissue is not really useful for research.

If your family member has Alzheimer’s Disease and didn’t participate in research at a medical institution with a brain bank, brain banks are likely only interested in the brain donation if your family member was diagnosed before age 59, or if there’s significant family history (at least two blood relatives), or if there’s another diagnosis that may be of interest (such as epilepsy).

 

2.4. I heard that brain banks no longer accept vascular dementia brains. Is this true?

Unfortunately this is also true. We are aware of no “loopholes” for vascular dementia though we were successful once in having a brain bank accept a vascular dementia case where the donor also had a traumatic brain injury and had attempted suicide.

 

2.5. I heard that brain banks no longer accept unspecified dementia brains. Is this true?

As most unspecified dementia is either Alzheimer’s Disease or vascular dementia, brain banks are no longer interested in brain donations from this category. Often times when we probe, the family remembers other specific diagnoses made along the way, leading to eligibility for brain donation.

 

2.6. What if my family member never saw a neurologist?

This means that a brain bank is less likely to be interested in the brain donation because there aren’t good neurological records available and the brain bank would prefer a diagnosis made by a neurology specialist.

 

2.7. Is brain donation allowed in all states in the US?

Generally speaking, brain donation is allowed in all states. However, New York makes brain donation difficult because state law requires that the brain be procured at a hospital. No New York hospitals are willing to plan in advance for brain donation. Most New York hospitals are reluctant to cooperate, even on a last-minute basis. If you live in the state of New York, the best option is to have your loved one transported across state lines for the brain procurement. Ask your funeral home or cremation organization if this is a viable option.

3.  Overview of brain donation process

 

3.1. What’s required for a successful brain donation?

After 350+ brain donations, our experience shows the following are required for a successful brain donation:

  • The next-of-kin or holder of healthcare power-of-attorney is willing to give consent, order neurological records for the brain bank, and provide written family info on their loved one’s symptom timeline;
  • The funeral home or cremation organization is cooperative and will allow the brain procurement to occur on its premises 7 days a week, either for free or a small fee, or charges a small fee to transport the deceased to a medical facility;
  • A pathology specialist (or pathologist) is available 7 days a week. If a single specialist isn’t available on all 7 days, we require an alternate so that all days of the week are covered;
  • The hospice agency (if applicable) is cooperative;
  • The care facility (if applicable) is cooperative; and
  • Donation arrangements are made in advance.

 

3.2. What do I need to prepare in advance? Can you send me the paperwork that I need to complete now?

Each brain donation arranged by Brain Support Network is individually organized and documented. In general, our instructions are broken into two parts.

The first part of the instructions includes:

  • The paperwork (e.g. the consent form, payment for the pathology specialist, and some forms that the brain bank requires) which must be completed by the family in advance of the brain donation;
  • The consent form is specific to each case;
  • A list of advance preparations (e.g. preparing bags of ice and providing alerts to key parties to indicate that death is imminent);
  • A list of steps that must be taken at the time of death (e.g. by the family, hospice, care facility, and the funeral home or cremation organization);
  • Details of the brain donation work to be performed by the pathology specialist (e.g. brain procurement protocol and instructions for shipping the brain to the brain bank).

With the family’s permission, the first part of the instructions are sent to the family, funeral home or cremation organization, and pathology specialist. If a hospice agency and care facility are involved, we also encourage the family to allow BSN to share the instructions with those entities. We also obtain the family’s permission to share key details with the brain bank.

The second part of the instructions includes:

  • Guidance on ordering neurological records that must be sent to the brain bank, ideally before brain tissue is received;
  • Guidance on providing written family information (e.g. the timeline of symptoms, family medical history) that must be sent to the brain bank, ideally before brain tissue is received;
  • Information on how the family may follow up with the brain bank about the neuropathology report.

The second part of the instructions are sent to the family only as it’s the family’s responsibility to order neurological records and provide written information.

Both sets of instructions are unique to each brain donation.

 

3.3. When my family contacts Brain Support Network for the first time, what information is needed from my family?

Please share with us the following info:

  • The name of the healthcare agent or next-of-kin who will give consent for the brain donation and his/her contact information;
  • The specific diagnosis, who made the diagnosis (name, affiliation, specialty such as neurology or psychiatry), when the diagnosis was made (month/year), and when symptoms began (month/year);
  • The name and phone number of the funeral home or cremation organization you plan to use;
  • Whether your family member is on hospice;
  • Whether hospice has indicated death is imminent (hours/days away); and
  • Whether you believe that death is imminent (hours/days away).

 

3.4. What does Brain Support Network do after receiving information about a prospective donor?

Brain Support Network evaluates this information. If we think that the brain donation may be accepted by a brain bank, we will call the funeral home or cremation organization and learn if they are cooperative with brain donation. We also learn the funeral home’s requirements and fees, if any. When we place this initial call, we are simply gathering information and do not need to share your family’s name with the funeral home.

Then we attempt to locate a pathology specialist who can do the brain donation work. The specialist may be the least expensive, the closest geographically to the funeral home, or the one available 24×7.

Once we have tentative cost information, we share that with the family. The family can then decide if we should proceed to make detailed arrangements.

 

3.5. When do the arrangements for brain donation need to be made?

Ideally, we ask that you contact us several months before death and certainly before death is imminent (hours or days away). Whenever you do contact us, we will do our best to help.

Certainly contact us when your family member:

  • Has been placed on hospice or when hospice indicates that your family member is “actively dying”,
  • Has stopped eating AND drinking for more than 48 hours,
  • Was recently hospitalized,
  • Is currently in the ICU of a hospital, or
  • Has contracted aspiration pneumonia.

 

3.6. Is there such a thing as making arrangements “too far” in advance?

Yes. We don’t encourage people with neurological conditions to make detailed arrangements years in advance of death. This is because, every six months or so, it is necessary to re-confirm the arrangements with the funeral home and pathology service. Prices go up, requirements may change, companies may get purchased, and people may move from the area. We aren’t staffed to re-confirm and revise detailed brain donation arrangements every six months.

In general, we recommend waiting until your loved one is placed on hospice to begin making detailed arrangements for brain donation. Between now and then, Brain Support Network can certainly look into how brain donation might work in your particular case such that when you or a loved one is placed on hospice, we already have some knowledge of your situation.

 

3.7. How does BSN prioritize which brain donation cases it works on first?

We work on death-is-imminent (hours or days away) cases first. If we are able, our staff drops everything to focus on those cases. (Note that our staff does not work 24×7.)

The next priority are cases where the intended donor is on hospice and hospice indicates the person is “actively dying.” In these cases, death may be several days or a couple of weeks away. Perhaps the intended donor has not taken in any fluids in a 48-hour period but is still conscious.

The next priority are cases where the intended donor is on hospice but death is not imminent. These are the ideal cases as there’s a “manageable” level of stress.

The next group of cases we work on are where the intended donor is on palliative care. For these cases, we prefer to do the legwork to understand how brain donation might work but we suggest waiting until the person is on hospice before we make detailed arrangements.

Then we work on all other cases. For these cases, we prefer to do the legwork to understand how brain donation might work but we suggest waiting until the person is on hospice before we make detailed arrangements.

 

3.8. What if death has already occurred?

Please contact us immediately. We may still be able to help you, if death occurred fewer than 24 hours ago. We are able to help about 50% of the families that contact us after death has occurred. You can improve our ability to help you quickly by providing information on:

  • The clinical diagnosis, including who made the diagnosis, if the person was a neurologist or psychiatrist, and when the diagnosis was made.
  • Name and contact info for the funeral home or cremation organization decedent’s name and permission to share the name with the funeral home or cremation organization.
  • Location of decedent: at the family’s home, care facility, funeral home, or coroner’s office.
  • Confirmation that the healthcare power-of-attorney (or next of kin) will consent to the brain donation.

Also, please place several gallon-size re-sealable plastic bags (Ziploc-type bags) of ice around the head of the intended donor. No need to place ice on the face. This will slow down the degradation of brain tissue until the person can be refrigerated.

Brain Support Network staff does not work 24×7. However, as soon as we receive your message, we will respond to it and help as best we are able.

If death occurred more than 24 hours ago, brain donation is no longer possible. Your family may want to consider brain autopsy.


4. Role of the family and person giving consent

 

4.1. Who can give consent for a brain donation?

States vary as to who can give consent. In some states, the person who gives consent for a brain donation must be the primary healthcare agent (power-of-attorney), as identified in a legal document. In other states, the next of kin can give consent. The next-of-kin is often a member of the donor’s immediate family, such as a spouse, eldest child, sibling, or designated guardian.

The donor’s consent is desired by some brain banks but is generally not required. Since the brain donation work must occur after the donor has died, the donor’s consent is not binding for those involved in the brain donation.

In some cases, families have not completed the legal document that identifies the primary healthcare agent (power-of-attorney). Many states allow this to be done with the signee placing an “X” on the signature line rather than a full signature.  And many states don’t require a notary but two witness signatures.  Some states (such as California) require that a person who lives in a care facility who signs such a document must have the document witnessed by a longterm care ombudsman.

If you aren’t sure if the primary healthcare agent (power-of-attorney) or legal next of kin will consent, please continue to discuss this and reach a firm decision before contacting Brain Support Network. Only you can make the right decision for your family.

 

4.2. What if the prospective brain donor cannot give consent?

The brain donor’s consent is not required. In many cases the donor cannot give consent because the donor is near death. In our experience the donor does not give consent in over half of brain donations.

 

4.3. What if the donor says in his/her will “no organ donation”? Is brain donation still possible?

The decision regarding brain donation is the responsibility of the healthcare agent (power-of-attorney) or next-of-kin. “Organ donations” that provide organs for transplant into living recipients are considered distinct from “brain donations” for autopsy and research.

 

4.4. What if our family has not discussed this with the intended donor?

Only your family can make a decision about this. Many families agree to brain donation on the grounds that the prospective donor was: (a) a person of science, (b) a person who supported the acquisition of knowledge, (c) a generous person who would do anything to help his/her family, (d) an organ donor who was willing to donate organs for transplant to save other lives, etc.

 

4.5. Is brain donation allowed according to my religious views and beliefs?

In our experience, most religions tend to support the donation of brain tissue. It is generally viewed as a compassionate and selfless act. Check with your local religious leader for more guidance.


5.  Funeral home, pathology specialist, hospice agency, and care facility

 

5.1. What does the funeral home or cremation organization do?

The funeral home or cremation organization is the most convenient location for brain procurement. Hopefully your family will select a funeral home or cremation organization that is cooperative. What does that mean? A cooperative funeral home or cremation organization allows the brain procurement to occur on its premises 7 days a week, either for free or a small fee. Ideally the funeral home or cremation organization will allow the work to occur on a 24×7 basis though as long as we have a several-hour window 7 days a week, we can usually make things work. If the funeral home or cremation organization doesn’t allow for this work to occur on its premises, we generally recommend the family find one that is cooperative.

Sometimes we cannot locate a pathology specialist who will travel to the funeral home or cremation organization to do the work. In that case, the brain procurement work will occur at a morgue or medical facility such that the funeral home or cremation organization is providing roundtrip transportation to/from that facility. Note that sometimes two roundtrips are needed, depending on the availability of refrigeration at the funeral home or cremation organization, and on the proximity to the morgue or medical facility. We are then hoping that the funeral home or cremation organization charges a small fee for that transportation.

 

5.2. What does the funeral home or cremation organization charge?

Approximately half the funeral homes or cremation organizations we work with charge no fee for allowing a pathology specialist access to their facility for the brain procurement work, whether this work is during normal business hours or after-hours.

Of those that do charge, often there’s only a fee if the brain procurement must take place outside of regular business hours so that the business can pay to have an employee open up the facility and supervise the pathology specialist. We consider an after-hours fee of $150 to $300 to be reasonable. If a funeral home or cremation organization charges a fee during its normal business hours, we would consider a fee of $150 to be reasonable.

If the funeral home or cremation organization is providing transportation to/from a morgue or medical facility where the brain procurement will occur, it is ideal if this is provided for free. Though transportation rates vary by US region, we consider a transportation fee of $150 to $300 to be reasonable, if the donor must be transported a 100 miles or so one-way.

 

5.3. Is an open casket service or viewing still possible after brain donation?

Yes, an open casket service or viewing is still possible. We prefer to know that this is the family’s wish in advance so we can request the pathology service provide extra attention.

 

5.4. What's the timing if I'm planning on embalming?

The brain procurement work must occur before the embalming.

 

5.5. Why does my funeral home express concern that my family member has Creutzfeldt-Jakob Disease (CJD)?

Creutzfeldt-Jakob Disease (CJD), also known as “mad cow disease,” is transmissible through infected brain tissue. If CJD is suspected, very strict protocols for tissue handling must be followed by the funeral home, pathology specialist, and brain bank. We refer all suspected CJD cases to a specialized brain bank.

We seldom come across suspected CJD cases. It is a rare disorder. Those with CJD usually die within six months of diagnosis and within a year of first symptoms.

 

5.6. Must our family use a funeral home or cremation organization?

Yes. The funeral home or cremation organization generally plays a key role in the brain donation. Once the brain procurement is completed, the funeral home or cremation organization will continue with final arrangements for cremation, embalming, viewing, and/or burial.

 

5.7. How can we find a pathology specialist?

Brain Support Network keeps extensive lists of pathology specialists we have worked with in the past and have heard about from families, funeral homes, or brain banks. We will locate a pathology specialist for you. Of course, we are looking for a specialist with experience with the brain procurement protocol, who is reliable, and who demonstrates proper respect for a donor and precious brain tissue. We prefer to find someone within a 90-minute drive of the funeral home, cremation organization, morgue, or medical facility where the brain procurement work will be performed. We prefer specialists who are available 7 days a week; otherwise, we have to develop a back-up plan with another specialist. We value good communication skills as we know families value this as well. We look for specialists who charge a reasonable fee. In expensive areas such as California, a reasonable fee is $700 to $800. Outside of Northern California, a reasonable fee is $500 to $700.

 

5.8. What does the pathology specialist do?

The pathology specialist handles all of the brain donation work that must be taken care of within a few hours of a loved one’s passing. This work includes procuring the whole brain, which is generally done at the funeral home (or cremation organization). The work might be done at a morgue or medical facility. The pathology specialist coordinates the timing of the brain procurement with the funeral home. Then the pathology specialist handles the tissue according to the protocol–perhaps cutting into two halves, freezing half, fixing half in formalin, etc. Finally, the pathology specialist ships the tissue to the brain bank according to the protocol.

 

5.9. What does the pathology specialist charge?

In expensive areas such as California, a reasonable fee for a brain procurement is $700 to $800. Outside of Northern California, a reasonable fee for a brain procurement is $500 to $700. Generally speaking, we do not utilize MDs (pathologists) as they tend to be more expensive. (There are exceptions.) Instead, we work with pathology technicians, dieners, pathologists’ assistants, etc.  We refer to them collectively as “pathology specialists.”

 

5.10. Does someone need a license to perform a brain procurement?

In most places in the US, a license is not needed to perform a brain procurement. In a few states, such as New York, only a MD can perform this work, which means that a MD’s license is required.

 

5.11. What does the hospice agency do?

Ideally, the hospice agency’s nurse/case manager and/or social worker confirms that the family has completed all of the advance paperwork. The RN can assist the family in preparing bags of ice. Either the hospice RN or social worker can provide an alert to Brain Support Network, the pathology specialist, and the funeral home when death is imminent. When death occurs, the hospice RN should pronounce as soon as possible, and alert Brain Support Network, the pathology specialist, and the funeral home that death has occurred. The hospice RN should confirm that bags of ice are placed around the donor’s head. When the funeral home or cremation organization arrives to transport the donor, the RN or social worker should hand the brain donation paperwork (usually in two envelopes) to the funeral home or cremation organization representative. Finally, the hospice RN or social worker should communicate with Brain Support Network to ensure that the brain donation is successful.

 

5.12. What does the care facility do?

Ideally, the care facility staff confirms that the family has completed all of the advance paperwork and knows where the paperwork is placed at the care facility. The staff can assist the family in preparing bags of ice and placing them in a freezer at the care facility. The staff can provide an alert to Brain Support Network, the pathology specialist, and the funeral home when death is imminent. When death occurs, if the care facility has an RN, he/she should pronounce death as soon as possible. Otherwise, the hospice RN should be called as soon as possible. Care facility staff should alert Brain Support Network, the pathology specialist, and the funeral home that death has occurred. The staff should place bags of ice around the donor’s head. When the funeral home or cremation organization arrives to transport the donor, the care facility staff should hand the brain donation paperwork (usually in two envelopes) to the funeral home or cremation organization representative. Finally, the staff should communicate with Brain Support Network to ensure that the brain donation is successful.

6. Selection of a brain bank

 

6.1. Where is the best place to donate my loved one’s brain?

If your loved one is lucky enough to have been seen at a major medical institution with an established brain bank (that has published research in major medical journals on the diagnosis you are interested in) and your loved one has participated in a research program at that institution, that’s the best place to donate your loved one’s brain. The combination of clinical records, research records, and brain tissue is powerful.

Note the caveat above about a brain bank having “published research in major medical journals on the diagnosis you are interested in” as it’s one thing to have a brain bank but another thing to actually utilize donated brain tissue for important research.

If your loved one hasn’t been seen at a major medical institution with an established bank or if you aren’t very impressed with the brain bank at the major medical institution, we can help explore your options. The options are largely based on your loved one’s clinical diagnosis. There may be options available based upon where your loved one lives.

 

6.2. How does BSN evaluate brain banks or determine which is best for a particular brain donation?

In general, we determine which brain bank is best for a particular brain donation based on:

  • The clinical diagnosis. Not all brain banks are interested in all diagnoses.
  • The research that the brain bank has published on a particular neurological disorder. One key aspect of brain donation is to enable research. If the brain is going to be donated to a brain bank, we want to be sure the brain will actually be utilized for research, not just sit on a shelf or in a freezer. Most major brain banks in the US that receive NIH funds, for example, have tissue sharing programs such that donated tissue is distributed to qualified researchers outside the specific brain bank where the tissue was donated.
  • Turnaround time for the neuropathology report. Many brain banks need 18 months or longer to return the neuropathology report to the family. This seems like a very long wait for the family to learn the confirmed diagnosis of their loved one. We prefer brain banks where the turnaround time for the neuropathology report is less than six months—ideally, three or four months after a loved one’s passing.
  • Expense to the family. A few brain banks pay all the costs associated with the brain donation. These brain banks have limited funds and might only be able to accept 100 cases a year, assuming the cost to them is around $1,000 for the tissue procurement, $2,000 for the tissue analysis, and more for storage. Other brain banks ask the family to pay the costs associated with the tissue procurement, and they will pay for the analysis of the tissue, provide the report to the family, and bank the tissue. Typically, the cost associated with brain donation is $1,000 in high cost-of-living geographies (e.g. California), and $800 elsewhere in the US. Often grants are available to families to defray these costs, depending on the diagnosis.

Once we learn the details for a particular brain donation, we can present options to the family.

 

6.3. How can I determine if the brain bank has published research on a particular neurological disorder?

The best way is to check out the PubMed website, pubmed.gov. This is a US government website that lists all of the research published in major medical journals around the world. To do a search, you might enter the following key words:

  • Frontotemporal dementia (or whatever disorder you are interested in)
  • Mayo (or whatever institution you are interested in)
  • Autopsy-confirmed (this gets at whether the diagnosis was confirmed through autopsy)

Scan through the titles of the journal articles to see how many meet your criteria.


7.  Brain donation costs

 

7.1. How much does brain donation cost?

Typically the cost associated with brain donation is $1,000 in high cost-of-living geographies (e.g. California), and $800 elsewhere in the US. These are fees paid directly to the pathology specialist and funeral home (or cremation organization). Many funeral homes do not charge a fee. Neither brain banks nor Brain Support Network charges a fee.

 

7.2. What if I cannot afford this cost?

For a few disorders, grants are available to families. For progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration, a grant up to $750 is available from another non-profit, CurePSP, upon submission of receipts, as long as the brain is donated to the Mayo Clinic in Jacksonville, Florida.

For Parkinson’s Disease, Lewy Body Dementia, Dementia with Lewy Bodies, and Frontotemporal Dementia, Brain Support Network makes small grants in the case of financial need when brains are donated to the Mayo Clinic in Jacksonville, Florida. The grant is paid after brain donation is complete, and neurological records and written family information are submitted to the Mayo Clinic.

 

7.3. Are any of the costs incurred during the process of brain donation tax deductible?

No. However, a donation to Brain Support Network, intended to help other families in the future, is tax deductible.

 

7.4. What does Brain Support Network request from donors and their families?

Brain Support Network requests that every family we assist with brain donation arrangements make a charitable contribution. Through this pay-it-forward approach, your contribution allows us to assist another family in the future, and past families’ contributions allow us to assist your family. A $500 contribution allows us to help one family; a $1,000 contribution allows us to help two families; and so on. Some families prefer to request memorial donations in lieu of flowers to come to our non-profit.


8. Steps taken after death

 

8.1. What steps are key once death occurs?

Upon death, the donor should be refrigerated as soon as possible.

Everyone involved in the brain donation effort must be notified:  funeral home or cremation organization, pathology specialist, and Brain Support Network.

Brain procurement should take place as soon as possible after death, and must take place within 24 hours of death, without exception. Normally the brain procurement takes place at a funeral home or cremation organization. Sometimes the brain procurement takes place at a third-party facility, such as a morgue, hospital, coroner’s office, or medical examiner’s office.

The brain procurement is done according to the brain bank’s protocol. The specialist replaces the skull removed for the brain removal and sutures the skin closed. Then, final arrangements continue as planned for the donor.

Once extracted, the brain is handled consistent with the brain bank’s protocol. For the Mayo Clinic Jacksonville protocol, one half (right) is frozen, most often in dry ice or a special freezer; one half is “fixed” (i.e. immersed) in formalin. The two halves are shipped to the brain bank in separate containers, usually within a week or two of death.

 

8.2. What if the intended donor has been transported to a coroner’s office?

Often, people who die unexpectedly end up at the coroner’s office. All efforts must be made to get the coroner’s office to release the decedent as soon as possible because Brain Support Network has never seen a case where, under these circumstances, a brain procurement was permitted at the coroner’s facilities.

It is best if efforts to release the decedent are made by the family. Brain Support Network has no legal standing to discuss personal matters with a coroner’s office.

 

8.3. What should the family do within a week of a loved one's passing?

If the family has not already done so, the family should order all neurological records be sent to the brain bank, and provide any other family background information (in written form) that the brain bank requires. These records and written family information are critical for the brain bank. It is ideal if the records and written family information are at the brain bank before the tissue arrives.


9. Neuropathology report and brain research

 

9.1. Will our family receive a report about the diagnosis? If so, when will this be received?

Yes, your family will receive a written report as to the diagnosis. The donated tissue is analyzed at the brain bank, in conjunction with the neurological records and written family information.

If you donate a loved one’s brain to the Mayo Clinic in Florida, a neuropathology report and cover letter can be expected within 3-4 months of the receipt of the brain tissue, neurological records, and written family information.

If you donate a loved one’s brain to the Mayo Clinic in Minnesota, a neuropathology report can be expected within 6 months of the receipt of the brain tissue.

Many other brain banks require 18 months to return the report to the family.

 

9.2. Who besides our family receives the report?

If you donate a loved one’s brain to the Mayo Clinic in Florida, a copy of the neuropathology report is sent to the pathology specialist who handled the brain procurement. If your loved one saw a physician at the Mayo Clinic, the neuropathology report may become part of your loved one’s medical record. If you donate a loved one’s brain to the Mayo Clinic in Minnesota, your loved one’s report will be shared with the Mayo Clinic physician your family member saw.

 

9.3. Once I receive the neuropathology report, do you suggest I share it?

Many families provide the report to the neurologists, psychiatrists, and other physicians involved in their loved one’s care so that the physicians may learn from the report.

Many families arrange conference calls with the primary neurologist who made the diagnosis to discuss clinical-pathologic correlations. You might consider involving multiple families members in this conference call and, with everyone’s permission, record it. During this conference call, adult children may be interested in asking if their parent’s confirmed diagnosis increases the chances the adult children will have a similar neurological disorder.

Some adult children provide their parent’s neuropathology report to their own primary care physician and ask that the report be added to their own medical record as evidence of family medical history.

 

9.4. There seems to be a neurological disorder running in our family because multiple blood relatives have similar symptoms. Is genetics testing part of the neuropathology report?

Genetics tests may be done on donated tissue but these results are not directly shared with the family. Any genetics testing where results are shared with family must be done by a CLIA-certified lab and utilize the services of a genetics counselor. Brain banks are not CLIA-certified.

 

9.5. How can I learn which research studies have used my family member’s brain tissue?

Top-tier brain banks, like the Mayo Clinic, will use donated tissue for research, either at the brain bank itself or at the facilities of other researchers around the world.

The best way to learn about this is to sign up for notifications from PubMed (pubmed.gov) when the brain bank (and chief neuropathologist) has authored a research publication utilizing donated brain tissue for the diagnosis your loved one was thought to have had during life or was found to have had through post-mortem analysis.

For example, you might sign up to be alerted for any publications matching this criteria:

  • Progressive Supranuclear Palsy (or the neurological disorder in which you are interested in)
  • Mayo Clinic (or another institution you specify
  • Dickson (the name of the chief neuropathologist at the Mayo Clinic in Florida)
  • Autopsy-confirmed (this indicates whether the diagnosis was confirmed through autopsy)

 

9.6. If my family member is diagnosed after death with Alzheimer’s Disease, does the fact that brain banks no longer accept AD brain donations mean that my family member’s tissue will not be utilized for research?

All brain tissue is valuable for research, regardless of the clinical or pathologic diagnosis. Brain banks are still conducting major research on Alzheimer’s brains.


10. Body donation and other organ donation

 

10.1. We are also interested in body donation. Is this possible in addition to brain donation?

Perhaps. It depends on whether the body donation organization you’ve selected is willing to accept a donated body with the brain removed. Some university medical centers and some for-profit organizations will accept such bodies; some do not. If the organization you’ve selected is not willing to accept a donated body with the brain removed, you will have to decide which is more important—brain donation or body donation. Only you can make the right decision!

 

10.2. We are also interested in organ donation. Is this possible in addition to brain donation?

Generally, when people ask about “organ donation,” they are thinking about the donation of heart, lungs, kidneys, etc. Organ donation may be possible when someone (e.g. after a vehicular accident or other major trauma) is pronounced brain-dead at the hospital while machines are used to maintain function of the heart and lungs. (Fewer than 1% of hospital deaths meet this criteria.) This sort of organ donation for purposes of transplant is not possible when someone dies at home or in a care facility, due to natural causes.

If someone dies at home or in a care facility due to natural causes, donation of tissue (such as skin, heart valves, veins), bone and connective tissue, whole eye, and cornea for transplant may still be possible. The timing and mechanics of this can be challenging to organize in conjunction with the brain donation. The brain must be removed within 24 hours of death and can be done in a non-sterile environment. Usually skin, bone, and cornea must be removed quickly after death and this work must be done in a sterile environment. You may have to decide which is more important: brain donation or other donation.

If this is of interest, we recommend you speak with the organization governing organ donation in your state. Learn which body parts are accepted in the case of natural death. Learn any exclusion criteria (e.g. age, gender, weight, cause of death, whether infectious disease such as MRSA is present, etc). Second, we recommend that you speak with the funeral home or cremation organization that you intend to use. Review their process and learn if they are willing to facilitate organ donation.

 

10.3. I have a pink dot on my driver’s license to indicate I’m an organ donor. Is brain donation not part of this?

Brain donation is not part of organ donation. The focus of the “organ donation” associated with the pink dot on your driver’s license is donation for transplant. This sort of organ donation is only possible when someone is in a vehicular accident, is pronounced brain-dead at the hospital (by two physicians), and the heart and lungs are kept going via machines.

 

10.4. Is a body autopsy possible? What's the timing of that?

We have met a handful of people over the years interested in brain donation and body autopsy. This means that the brain is procured and sent to a brain bank for analysis, and the body is examined (but not donated). Generally, both the brain procurement and the body autopsy—often called a “general autopsy”—are handled by a single pathologist. In a general autopsy, a visual inspection of organs and systems occurs and samples from organs are removed; this often requires 4-5 hours of work. Later, tissue samples are examined under a microscope. A report is provided to the legal next-of-kin within 1-2 months. Just as with brain autopsy, a body autopsy can yield valuable information about the nature and severity of disease. This medical information can be useful to surviving blood relatives, particularly children. Sometimes the cause of death can be determined, which can provide peace of mind.

Ask your local funeral home or cremation organization if they can assist you in arranging a “private autopsy.” The cost for the body autopsy and brain procurement might be between $3,000 and $4,000, higher in some places like New York state. Ask which pathologist will be receiving tissue samples and performing the analysis. Ask how long it will take to obtain a report. Learn if there’s an opportunity to follow up with the pathologist and ask questions after receiving the report.

Sometimes major university medical centers will perform a general autopsy at no or minimal charge to the family as long as the person has a medical record number from that medical center (or has been seen there previously). Again, the local funeral home or cremation organization may know about this. Or contact the autopsy department at the major university medical center. Often autopsies are only done Monday to Friday, 7am to 3pm, and are handled by pathology residents. Generally these are only done at the morgue of the university medical center. This means that the family may have to pay the funeral home or cremation organization for roundtrip transportation to/from the morgue. If a university medical center is involved in the body autopsy, coordination will be key as most likely the brain procurement will need to take place at the funeral home or cremation organization within a few hours of death, and then the decedent transported to the medical center’s morgue for the body autopsy to occur.


11.  Other

 

11.1. What should I put in my living will or will about brain donation?

It is helpful to have something in your living will about brain donation.  A living will is part of your advance health care directive.  You can direct your healthcare power-of-attorney to make advance arrangements for your brain donation once you are placed on hospice or hospitalized with a serious condition (such as pneumonia).  You can state your preference for brain donation rather than brain autopsy, and you can state your preference that you’d like your brain to go to a brain bank that actively publishes research using donated brain tissue into the disorder you have.  If you’d like, you can also direct your healthcare power-of-attorney to contact Brain Support Network for advice about the brain donation and arrangements, as appropriate.  Ideally, you should discuss now your interest in brain donation with your primary and secondary healthcare agents.

Generally a will distributes your assets after your death, and it is often not read until some period of time after death occurs. Putting something in your will about brain donation is not helpful.

 

11.2. What are the pros and cons of “DNA banking”?

“DNA banking” is a new business category where brain tissue, blood, or CSF (cerebrospinal fluid) of a deceased family member is banked. Generally, the family must pay an annual fee to continue to store this tissue or fluid. The value of this isn’t yet clear to us because these DNA banks are generally not involved in medical research.

 

11.3. What do you think about doing a brain biopsy on a living person to determine what pathologies are in the brain?

Over the years, we have heard of two cases of brain biopsy. In many cases, a brain biopsy is simply an unnecessary risk because most of these disorders do not have treatments or cures, making diagnosis less valuable than in other circumstances. Further, a brain biopsy only extracts a small piece of brain tissue which would not indicate pathologies that may be present in other regions of the brain.