By Meghan McCarthy
Author’s Note: This article is part of ongoing coverage of the 2024 Alzheimer’s Association International Conference (AAIC). To view all highlights, please click here.
When Rafi walked into the Pennsylvania Convention Center, he was immediately taken by its sheer scale.
Spanning over 2.1 million square-feet, the venue had large research posters hung throughout the exhibition space. Soft and loud sounds of bustling crowds filled hallways. Stages with prominent researchers and entertainment groups were broadcasted. A motif of purple and white adorned all spaces.
With thousands of conference attendees, the 2024 Alzheimer’s Association’s International Conference convened researchers, clinicians, trainees, and families affected by Alzheimer’s disease and related dementias (ADRDs).
Rafi was amongst the many care partners to take part in the event.
Longstanding PMC involvement
Rafi first became involved with the Penn Memory Center (PMC) by participating in several caregiver workshops, including Cognitive Comedy, and research studies. As a care partner for his godmother, who is a patient at PMC, and parents, he aimed to better understand ADRDs.
At the start of the pandemic, Rafi’s godmother experienced increased isolation and personality changes associated with her dementia.
Rafi’s family
It was then that he decided to become an informed and active care partner.
“Halfway into the pandemic, I thought, ‘What really is going on?’ and I wanted to find out as much as I could and be as helpful as possible,” Rafi said. “I wanted to just learn as much as I could about resources.”
Through years of subsequent involvement, Rafi has participated in several research studies. He has found these opportunities to be important, fascinating, and an introduction to several amazing people.
This spring, he first learned of AAIC through PMC. With encouragement from friends in the field, he decided to maximize the in-person Philadelphia opportunity.
“I heard about the conference through the Penn Memory Center and thought, ‘Wow! What an amazing opportunity to be a part of this,’” Rafi stated. “When I made that decision, I decided to go full force. I was going to make the most of every moment and meet as many people as possible. So, I did that, but I was exhausted.”
This year, AAIC included a specialized day, “AAIC for All.” A no-cost event, it extended the conference to wider, public audience for interested community members, caregivers, and those living with dementia.
Forging connections
At this year’s AAIC, poster presentations, lectures, and panels were presented throughout the five- day event. Presentations ranged from highlighting the importance of tau in drug developments and impact of disparities on behavioral-variant frontotemporal dementia (bvFTD) to research on empathy loss and brain donation methodology.
“It was quite overwhelming; there is information available every minute,” Rafi said. “Deciding which sessions to attend was the hardest part.”
AAIC attendees include a diverse array of individuals. Some, like Rafi, are care partners aiming to learn more about the progress and challenges of ADRD research. Others, such as PMC attendees, are clinicians, researchers, and ADRD experts. While varied, all share a passion for progressing clinical care and experiences for patients.
“I started to connect with people from different parts of the country and world with different levels of experience,” Rafi said. “Every moment not in a session was sort of connecting by osmosis. People would just start coming together and sharing experiences. It was really affirming and, for the first time, felt helpful.”
In a myriad of conversations, Rafi found some were grounded in discussion of research participation experiences, while others were honest reflections about caregiving.
“Five years ago, I didn’t know a lot about this,” Rafi said. “Now, I understand how prevalent dementia is. I am very touched and pleased that there are so many caring people willing to share beautiful things.”
Finding meaning
Reflecting on the experience, he was particularly impressed with representation of research in Latin America. Rafi’s maternal family is from Argentina, and he attended high school in Brazil. Many presentations connected Rafi to his familial background and experiences.
Rafi’s family
He also enjoyed learning about outreach initiatives with Latino populations and other communities of color. Several PMC initiatives, such as the Aging Brain Cohort Dedicated to Diversity (ABCD2), exemplify this.
Directed at care partners, he valued that panelists discussed the importance of self-care.
“An uplifting piece was how everyone kept talking about the importance of staying healthy, treating your body well, and bringing joy into your life,” Rafi said.
While enthralled with the information, Rafi was honest in sharing its vast availability also caused moments of overwhelm.
“After a while, it was really sort of beyond what I could comprehend,” Rafi shared. “I thought ‘I’m just going to take it in, and hopefully have it wash over me and afterwards I’ll have a revelation.”
Despite this, hope and progressive momentum was threaded throughout many discussions. Ultimately, Rafi left the conference empowered by the education.
“I can’t say enough about it, because what an opportunity,” Rafi said. “I am so grateful.”
Information presented in this article was generously shared by PMC care partner and research participant, Rafi. The Communications team greatly appreciates his time and efforts in sharing his story to benefit our community.
To learn more about AAIC for All, please click here.
To read PMC’s AAIC coverage, please click here.