People living with Alzheimer's could contribute to finding a cure by donating to the Florida Brain Bank Research Program
Floridians living with Alzheimer’s Disease or another form of dementia have a unique opportunity to leave a legacy that touches their families, communities, and future generations.
The State of Florida Brain Bank Research Program is one of this nation’s few state-run autopsy initiatives that seek to research and cure Alzheimer’s, and the Alzheimer’s & Dementia Resource Center is the state’s foremost contributor.
Just last year, ADRC facilitated the procurement of brain tissue from 18 Central Floridians, says ADRC Programs and Services Director and Brain Bank Program Manager Alexandra Garnier-Mercier.
These donations allow researchers to unequivocally confirm diagnosis, better understand the disease’s progression, enhance treatment options, and augment diagnostic tools.
For the donor and the donor’s family, the contribution offers something more.
Potential participants are excited to help find the medicine that could slow, prevent, and cure the disease, which is the initiative’s deepest goal.
The process also affords the family members a unique closure.
Although the neuropathology report doesn’t state the cause of death, the family learns the exact pathology when it comes to the specific forms of dementia that impacted the donor.
Other brain diseases may also be revealed, says Garnier-Mercier.
Information from the neuropathology report may encourage immediate family members to adopt lifestyles that reduce one’s risk of developing Alzheimer’s disease.
Beyond prevention, though, the participant’s loved ones gain ADRC’s support in understanding the report and navigating grief and loss.
Prior to the donor’s death, Garnier-Mercier schedules care coaching and directs Care Partners to respite, state, and federal programs that might be beneficial.
“Sometimes the Care Partner doesn’t understand the disease, so I will talk to them about workshops that will help them maneuver that journey a little better,” says Garnier-Mercier. “I will refer them to workshops and support groups that show them they’re not alone.”
The family’s contribution to the research also facilitates comfort.
Said one Care Partner: “Thank you for giving my mother her last hoorah, a gift to science and a gift to our future.”
The potential participant or their durable power of attorney can determine if donation makes sense, but the donor needs to be a Floridian living with diagnosed dementia for a year.
This time frame allows professionals to rule out urinary tract infection, diabetes, thyroid deficiencies, or other illnesses that can present with cognitive impairment.
The Alzheimer’s & Dementia Resource Center is one of the state’s two enrollment locations, so if you’d like to learn more, please contact Garnier-Mercier directly at 407.436.7755 or visit adrccares.org.