Being Patient's Guide to Lewy Body Dementia
What brain donation is
Why it matters for diagnosis and treatments
How the process works
What is Lewy body dementia?
1.4 million Americans live with Lewy body dementia (LBD), making it the second most common type of dementia after Alzheimer’s disease. It is caused by Lewy bodies, which are protein deposits that develop in nerve cells in the brain.
READ MORE
Return
Next
What is Lewy body dementia?
Brain donation helps researchers:
Study what actually changed in the brain during diseases like Alzheimer’s and other dementias
Compare brains affected by disease with “control” or healthy brains
Support dozens — and sometimes even hundreds — of studies from a single donation
READ MORE
Return
Next
What is Lewy body dementia?
Study what actually changed in the brain during diseases like Alzheimer’s and other dementias
How donated brains help build better diagnostics and treatments
READ MORE
Return
Next
What is Lewy body dementia?
Study what actually changed in the brain during diseases like Alzheimer’s and other dementias
Return
Next
Hallmarks of LBD
"I was never asked about my sleep until I got to the Mayo clinic, and that’s six neurologists in the end who didn’t ask me about my sleep patterns… After it happened, I learned you can have hallucinations of all your senses and I had this change in my sense of taste, and it really does change."
pathological diagnosis of Alzheimer’s disease also had other pathologies. For older adults with a diagnosis of Alzheimer’s disease, the median number of pathologies was three. So it’s more the rule than the exception that when a person comes to autopsy and we’re looking at their brain tissue, we see multiple different pathologies that are there and that might be contributing to their symptoms.”
Don KentRetired lawyer, living with LBD
READ MORE
Return
Next
What is Lewy body dementia?
1.4 million Americans live with Lewy body dementia (LBD), making it the second most common type of dementia after Alzheimer’s disease. It is caused by Lewy bodies, which are protein deposits that develop in nerve cells in the brain.
READ MORE
Return
Next
Hallmarks of LBD
pathological diagnosis of Alzheimer’s disease also had other pathologies. For older adults with a diagnosis of Alzheimer’s disease, the median number of pathologies was three. So it’s more the rule than the exception that when a person comes to autopsy and we’re looking at their brain tissue, we see multiple different pathologies that are there and that might be contributing to their symptoms.”
Don KentRetired lawyer, living with LBD
READ MORE
Return
Next
What is Lewy body dementia?
1.4 million Americans live with Lewy body dementia (LBD), making it the second most common type of dementia after Alzheimer’s disease. It is caused by Lewy bodies, which are protein deposits that develop in nerve cells in the brain.
READ MORE
Return
Next
What is Lewy body dementia?
What is Lewy body dementia?
What is Lewy body dementia?
What is Lewy body dementia?
Return
Next
What is Lewy body dementia?
Consent for brain donation depends on state rules and family circumstances. In some states, consent must come from the legally named healthcare agent or power of attorney. In others, a next of kin, such as a spouse, adult child, sibling or guardian, may be able to give consent. The donor’s wishes are important, but because brain donation happens after death, final consent usually comes from the family or legal decision-maker. If the donor cannot give consent, brain donation may still be possible. Families who are unsure should talk through the decision ahead of time.
Return
Next
Hallmarks of LBD
pathological diagnosis of Alzheimer’s disease also had other pathologies. For older adults with a diagnosis of Alzheimer’s disease, the median number of pathologies was three. So it’s more the rule than the exception that when a person comes to autopsy and we’re looking at their brain tissue, we see multiple different pathologies that are there and that might be contributing to their symptoms.”
asked if we can get an autopsy on my mom's brain. And her primary [care doctor said]... as long as we have power of attorney, my sister and I, which we did have — we had her health care directive as well — that it wouldn't be a problem. He put us directly in touch with the resource at UCSF, who let us know what we would need. They directly made the arrangements with the funeral home… to get her brain to UCSF. It was something that we hadn't really thought about. We were very grief stricken, but it happened so quickly and seamlessly that it was really quite wonderful.”
Susan Kan
Read more
Return
Next
It’s a time-sensitive process
Brain donation has a tight timeline because tissue quality matters. That’s why most programs ask families to call the donation center as soon as possible — often within hours of death. In one family’s experience coordinating with an NIH-affiliated repository, they were told to call within an hour, and there were about 18 hours to recover and transport the brain to the biobank. Planning ahead is important so family members know exactly who to contact and what steps to take when the time comes.
Return
Next
It’s a time-sensitive process
Some brain donation programs, including donations through the Brain Donor Project and NIH NeuroBioBank, cover recovery and transport costs, so there is no additional cost to the family beyond usual funeral expenses. But costs and arrangements can vary by program. The Alzheimer’s Association notes that a brain autopsy may involve cost and special arrangements, so families should ask in advance what is covered, who handles transport and recovery, and whether any out-of-pocket expenses could arise.
Return
Next
It’s a time-sensitive process
Some brain donation programs, including donations through the Brain Donor Project and NIH NeuroBioBank, cover recovery and transport costs, so there is no additional cost to the family beyond usual funeral expenses. But costs and arrangements can vary by program. The Alzheimer’s Association notes that a brain autopsy may involve cost and special arrangements, so families should ask in advance what is covered, who handles transport and recovery, and whether any out-of-pocket expenses could arise.
Multiple sclerosis, epilepsy
Depression, anxiety, bipolar disorder, schizophrenia
Autism spectrum disorder
Traumatic brain injury (TBI) & CTE
Addiction
READ MORE
Return
Next
It’s a time-sensitive process
Some brain donation programs, including donations through the Brain Donor Project and NIH NeuroBioBank, cover recovery and transport costs, so there is no additional cost to the family beyond usual funeral expenses. But costs and arrangements can vary by program. The Alzheimer’s Association notes that a brain autopsy may involve cost and special arrangements, so families should ask in advance what is covered, who handles transport and recovery, and whether any out-of-pocket expenses could arise.
Return
Next
Learn more
Explore more resources on beingpatient.com:
Return
Next
Want to keep learning?
beingpatient.com
for the latest news and information on brain health and Alzheimer's disease
Return
Brain donation starts with advance arrangements through a brain bank or donation program.
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Brain donation starts with advance arrangements through a brain bank or donation program.
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Transcript
Being Patient's Guide to Lewy Body Dementia
What brain donation is
Why it matters for diagnosis and treatments
How the process works
What is Lewy body dementia?
1.4 million Americans live with Lewy body dementia (LBD), making it the second most common type of dementia after Alzheimer’s disease. It is caused by Lewy bodies, which are protein deposits that develop in nerve cells in the brain.
READ MORE
Return
Next
What is Lewy body dementia?
Brain donation helps researchers:
Study what actually changed in the brain during diseases like Alzheimer’s and other dementias
Compare brains affected by disease with “control” or healthy brains
Support dozens — and sometimes even hundreds — of studies from a single donation
READ MORE
Return
Next
What is Lewy body dementia?
Study what actually changed in the brain during diseases like Alzheimer’s and other dementias
How donated brains help build better diagnostics and treatments
READ MORE
Return
Next
What is Lewy body dementia?
Study what actually changed in the brain during diseases like Alzheimer’s and other dementias
Return
Next
Hallmarks of LBD
"I was never asked about my sleep until I got to the Mayo clinic, and that’s six neurologists in the end who didn’t ask me about my sleep patterns… After it happened, I learned you can have hallucinations of all your senses and I had this change in my sense of taste, and it really does change."
pathological diagnosis of Alzheimer’s disease also had other pathologies. For older adults with a diagnosis of Alzheimer’s disease, the median number of pathologies was three. So it’s more the rule than the exception that when a person comes to autopsy and we’re looking at their brain tissue, we see multiple different pathologies that are there and that might be contributing to their symptoms.”
Don KentRetired lawyer, living with LBD
READ MORE
Return
Next
What is Lewy body dementia?
1.4 million Americans live with Lewy body dementia (LBD), making it the second most common type of dementia after Alzheimer’s disease. It is caused by Lewy bodies, which are protein deposits that develop in nerve cells in the brain.
READ MORE
Return
Next
Hallmarks of LBD
pathological diagnosis of Alzheimer’s disease also had other pathologies. For older adults with a diagnosis of Alzheimer’s disease, the median number of pathologies was three. So it’s more the rule than the exception that when a person comes to autopsy and we’re looking at their brain tissue, we see multiple different pathologies that are there and that might be contributing to their symptoms.”
Don KentRetired lawyer, living with LBD
READ MORE
Return
Next
What is Lewy body dementia?
1.4 million Americans live with Lewy body dementia (LBD), making it the second most common type of dementia after Alzheimer’s disease. It is caused by Lewy bodies, which are protein deposits that develop in nerve cells in the brain.
READ MORE
Return
Next
What is Lewy body dementia?
What is Lewy body dementia?
What is Lewy body dementia?
What is Lewy body dementia?
Return
Next
What is Lewy body dementia?
Consent for brain donation depends on state rules and family circumstances. In some states, consent must come from the legally named healthcare agent or power of attorney. In others, a next of kin, such as a spouse, adult child, sibling or guardian, may be able to give consent. The donor’s wishes are important, but because brain donation happens after death, final consent usually comes from the family or legal decision-maker. If the donor cannot give consent, brain donation may still be possible. Families who are unsure should talk through the decision ahead of time.
Return
Next
Hallmarks of LBD
pathological diagnosis of Alzheimer’s disease also had other pathologies. For older adults with a diagnosis of Alzheimer’s disease, the median number of pathologies was three. So it’s more the rule than the exception that when a person comes to autopsy and we’re looking at their brain tissue, we see multiple different pathologies that are there and that might be contributing to their symptoms.”
asked if we can get an autopsy on my mom's brain. And her primary [care doctor said]... as long as we have power of attorney, my sister and I, which we did have — we had her health care directive as well — that it wouldn't be a problem. He put us directly in touch with the resource at UCSF, who let us know what we would need. They directly made the arrangements with the funeral home… to get her brain to UCSF. It was something that we hadn't really thought about. We were very grief stricken, but it happened so quickly and seamlessly that it was really quite wonderful.”
Susan Kan
Read more
Return
Next
It’s a time-sensitive process
Brain donation has a tight timeline because tissue quality matters. That’s why most programs ask families to call the donation center as soon as possible — often within hours of death. In one family’s experience coordinating with an NIH-affiliated repository, they were told to call within an hour, and there were about 18 hours to recover and transport the brain to the biobank. Planning ahead is important so family members know exactly who to contact and what steps to take when the time comes.
Return
Next
It’s a time-sensitive process
Some brain donation programs, including donations through the Brain Donor Project and NIH NeuroBioBank, cover recovery and transport costs, so there is no additional cost to the family beyond usual funeral expenses. But costs and arrangements can vary by program. The Alzheimer’s Association notes that a brain autopsy may involve cost and special arrangements, so families should ask in advance what is covered, who handles transport and recovery, and whether any out-of-pocket expenses could arise.
Return
Next
It’s a time-sensitive process
Some brain donation programs, including donations through the Brain Donor Project and NIH NeuroBioBank, cover recovery and transport costs, so there is no additional cost to the family beyond usual funeral expenses. But costs and arrangements can vary by program. The Alzheimer’s Association notes that a brain autopsy may involve cost and special arrangements, so families should ask in advance what is covered, who handles transport and recovery, and whether any out-of-pocket expenses could arise.
Multiple sclerosis, epilepsy
Depression, anxiety, bipolar disorder, schizophrenia
Autism spectrum disorder
Traumatic brain injury (TBI) & CTE
Addiction
READ MORE
Return
Next
It’s a time-sensitive process
Some brain donation programs, including donations through the Brain Donor Project and NIH NeuroBioBank, cover recovery and transport costs, so there is no additional cost to the family beyond usual funeral expenses. But costs and arrangements can vary by program. The Alzheimer’s Association notes that a brain autopsy may involve cost and special arrangements, so families should ask in advance what is covered, who handles transport and recovery, and whether any out-of-pocket expenses could arise.
Return
Next
Learn more
Explore more resources on beingpatient.com:
Return
Next
Want to keep learning?
beingpatient.com
for the latest news and information on brain health and Alzheimer's disease
Return
Brain donation starts with advance arrangements through a brain bank or donation program.
READ MORE
Brain donation starts with advance arrangements through a brain bank or donation program.