Viewpoints of FTD – Brain Donation

Graphic: Viewpoints of FTD - Brain Donation
While there is currently no cure or approved treatments for FTD, increasing numbers of diagnostic tools and experimental treatments are entering the clinical trial phase of their development. A major contributor to this progress is the growing number of people diagnosed with FTD participating in research, including through brain donation.
Not only does a donation provide researchers with brain tissue that can be used to study the effects of the disease, it also provides families with a definitive diagnosis through brain autopsy.

What Are the Benefits of Brain Donation?

Brain donation can be a difficult topic of discussion for families on the FTD journey, and everyone should have the space to make a decision that is best for them. It is beneficial to discuss brain donation as early as possible – this not only allows more flexibility with logistics but allows people with FTD to share their preferences.

It can help to explain to family members how the donation process can resolve many uncertainties that come with an FTD diagnosis. Donations undergo a brain autopsy to determine the biological causes of the FTD, which can shed light on aspects of a person’s FTD that weren’t detectable prior. Sometimes, the causes of the disease may be different than what was initially expected.

In a previous issue of Help & Hope, Cindy Odell of AFTD’s Persons with FTD Advisory Council shared in a Lived Experience article how she and her family had discussed the genetic uncertainties surrounding her diagnosis, and how donating her brain could address them. While genetic testing is not a part of the brain donation process for everyone, a brain autopsy can provide insight into a family’s medical history.

“I explained the necessity of learning if, as we suspected, my FTD was genetic,” Odell wrote. “If it was, I felt that other family members needed to be made aware so they could consider being tested and preparing for the future. I even suggested they invest in long-term care insurance and additional life insurance. Some were shocked and offended by this. I explained I was not suggesting that they have FTD, just that even the remote chance is worth preparing for now, because after diagnosis, it is too late. Besides, what could it hurt?”

Indeed, brain donation can help scientists studying FTD. As Odell wrote, “I knew that research was the only way to find a means of treating FTD and, eventually, I hope, curing it.”

Brain banks, such as the Australian bank covered in a 2018 article by the Guardian, preserve donated brain tissue for researchers studying neurodegenerative diseases. They also provide preliminary data by analyzing donated tissue and making the documentation available to scientists, allowing them to easier find tissues that match their research. Using the donated samples, researchers can study the underlying mechanisms of different types of FTD, such as the roles of potential biomarkers or FTD-causing genetic variants.

Participation in a brain donation program isn’t restricted to people with FTD, with family members and care partners also able to donate their brains for research. Control samples from people without an FTD diagnosis are an essential component of research studies.

Options for Brain Donation

Families have many options to consider when searching for a brain donation program. The process can be complicated, however, and must be completed while a person with FTD is alive (brain tissue must be delivered to a brain bank within hours of death).

One option discussed by AFTD’s HelpLine staff in a previous Help & Hope article is participating in an ongoing research study. Longitudinal studies such as ALLFTD can facilitate brain donations while ensuring that clinical records are linked to the donated samples, making them even more useful to researchers.

Being enrolled in a research study isn’t necessary for brain donation, though. Nonprofit organizations such as the Brain Donor Project and the Brain Support Network help families complete paperwork, arrange logistics, and provide resources to learn more about the process.
Families can also discuss brain donation with members of their care team to see if any provide brain donation services. Specialists on your care team may also be able to provide recommendations.

Want to learn more about brain donation? The AFTD Perspectives in Research webinar Brain Donations: Who, What, Where, When, and Why provides an in-depth overview of the process and how it helps families and researchers. A brief animated video exploring the brain donation process can be found on AFTD’s YouTube channel. For more information about the brain donation process, read AFTD’s guidance on brain donation.

If you have questions about brain donation, AFTD’s HelpLine can provide answers and help you explore available options. Contact the HelpLine at 1-866-507-7222 or info@theaftd.org.

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