Transforming Health Care through Innovative and Impactful Research

Dementia is the loss of cognitive function that disrupts a person's daily life. There are several types of dementia, with varied symptoms, including Alzheimer's disease and frontotemporal degeneration. Dementia has a profound effect on the estimated 6.7 million individuals in the U.S. living with the disease and the nearly 16 million caregivers who support loved ones living with dementia.

Katie Brandt began serving as a consumer/lived experience peer reviewer for the Peer Reviewed Alzheimer's Research Program in FY21.

"As a wife, a daughter, I had experience," Brandt said. "I was drawn to the program. I could be that different voice in the room with other researchers to highlight things they wouldn't think of."

As a devoted daughter, wife, and mother, Brandt uses her experiences as a caregiver to help others navigate the challenges that come with caring for a loved one with dementia.

According to Brandt, her life took an unpredicted turn when she was 29 years old. Her husband, Mike, received a frontotemporal degeneration diagnosis. Further, she said that shortly thereafter, her mother passed unexpectedly, and her father was diagnosed with Alzheimer's disease.

Brandt said she found herself as a caregiver for her husband, her father and infant son. She said that she faced this new life head on and committed to giving a great life to her husband, son and father.

Brandt said she left her career in the child welfare industry, lost personal connections and faced financial hardship – a common reality for many individuals that assume a caregiver's role. In this new position, Brandt said she actively educated herself about resources to help her husband and father. In 2012, Brandt's husband passed. She said the grief she felt from losing him and her mother, as well as caring for her father, fueled her passion to give back.

Brandt said she contacted the Association for FTD with the goal of helping the dementia community, and the AFTD annual campaign featured her family's story. Brandt said she started to volunteer as a support group facilitator.

Through this involvement, Brad Dickerson, M.D., the director of the Frontotemporal Disorders Unit at Massachusetts General Hospital, approached her to become a consultant, according to Brandt. Brandt said she started serving as a consultant and donated her husband's brain for research. In this role, she said that she also developed educational materials about brain donation and connected with fellow caregivers.

According to Brandt, Dickerson offered Brandt a part-time position in the lab, and she now serves as the Director of Caregiver Support Services and Public Relations through the MGH FTD Unit. Brandt said she oversees caregiver research studies, caregiver education initiatives, including a webinar series and fundraising for the FTD Unit.

In 2017, the MGH FTD Unit nominated Brandt to join the National Alzheimer's Project Act Advisory Council on Alzheimer's Research as a caregiver representative. During Brand's two years with NAPA, she said she heard the voices of families across the country living through a dementia diagnosis and met numerous experts that she felt genuinely cared about the individuals living with dementia and their caregivers. She said this experience illustrated the impact her voice and story could have on the dementia community.

Brandt's passion for caregiver advocacy and interest in policy drew her to the Congressionally Directed Medical Research Programs. Brandt said she is a proponent of community engagement, which is something that the PRARP prioritizes.

"Participating as a peer reviewer for PRARP is meaningful to me, because it has provided me with the opportunity to honor my father, a Veteran living with dementia due to Alzheimer's disease, who is no longer able to speak for himself," Brandt said. "It also gives me the opportunity to hope that the cure for Alzheimer's and related dementias is not so far from the care of today."

She said that her years of personal and professional experience showed her the importance of those with lived experience in the review of grant applications to bridge the gap between the research investigators and another way to engage the dementia and caregiver community.

"When I read proposals that have innovative approaches to unlocking the secrets of these devasting neurodegenerative diseases, it makes me feel as though we are gaining momentum, bringing us closer to the finish line for treatments, a cure, and prevention," Brandt said.

Her lived experience, advocacy work and career within this community gave Brandt a unique perspective to contribute invaluable insight as a consumer/lived experience peer reviewer. Brandt reviewed research applications alongside scientific research medical experts.

"I have immense gratitude for the clinicians and scientists who have dedicated their professional lives to this essential work," Brandt said. "I am proud of the small part that I am able to play as a reviewer who can speak to the potential impact that a positive study outcome may have for persons living with a diagnosis, caregivers, and families."

Reference:
¹Alzheimer's Association. 2022 Alzheimer's disease Facts and Figures: Special Report More Than Normal Aging: Understanding Mild Cognitive Impairment. Alzheimers Dement 2022:18. https://www.alz.org/alzheimers-dementia/facts-figures