Team profile by Kamal Golla, Melissa Harris-Gersten, Eli Boone, Kayla Thompson, Ali Raich, Amulya Vatsavai, Annie Qin, Heiley Tai, Mohini Johri and Xeno Hu

Our Bass Connections research project focused on financial toxicity and its impact on people living with dementia and their care partners. Financial toxicity refers to the negative impact that healthcare costs can have on individuals and their families. It can result in rationing medications and medical care, bankruptcy, loss of income and debt. While financial toxicity is a well-known issue, there is little research on how it impacts people living with dementia and their care partners.

To address this gap, our team used a novel visual research methodology called Photovoice, which combines photography, verbal narratives and critical reflection by groups of individuals to capture aspects of their environment and experiences with a certain topic. The team conducted a series of seven weekly Zoom sessions with two partner dyads, each composed of the person living with dementia and their spousal care partner. The dyads learned about the Photovoice process and took their own photos representing dementia and financial well-being. The team then explored different components of financial well-being and financial burden through in-depth discussions guided by the photo-taking process.

“By engaging in qualitative, focus-group-based research, I was able to learn more about our research topic through hearing a variety of human perspectives. I’m grateful that I got to listen to the stories of people living with dementia and their care partners, and that I was able to work with this team.” –Heiley Tai, Undergraduate Team Member

Through the Photovoice sessions, six themes emerged relating to the dyads’ financial experiences and dementia: 1) go home and get your affairs in order; 2) the real (or new?) journey; 3) the great unknown; 4) between a rock and a hard place; 5) searching for money; and 6) finding hope in others. These themes highlight the challenges that people living with dementia and their care partners face in managing their finances and the impact it has on their lives.

Study participants made recommendations on how healthcare leaders, policymakers and community organizations can make a meaningful difference for families living with dementia. They stressed the need for research to support the care journey by improving the diagnosis process and educating health care professionals on the financial resources available to families living with dementia. They also recommended improving care coordination and providing more guidance and support to families in managing their finances.

“Looking at a research topic from the perspective of a Photovoice facilitator provided a deeper understanding of the topic and encouraged enthusiasm for us as student researchers. Bass Connections was very integral to my Duke experience!” –Annie Qin, Undergraduate Team Member

Overall, this work sheds light on an important and often overlooked issue in healthcare and provides insights into how financial toxicity impacts people living with dementia and their care partners. The use of Photovoice as a research methodology allowed for the dyads' voices to be heard, and their experiences to be captured in a meaningful way. The study's recommendations provide a starting point for future research and policy initiatives aimed at addressing the financial burden of dementia on families.

A highlight for our team was sharing our findings at the 2023 Fortin Foundation Bass Connections Showcase. We presented a poster and podium presentation at the 2023 Duke-UNC Alzheimer’s Disease Research Center’s SLAM-DUNC conference in May, 2023. We will also engage in an interactive session hosted by the National Council of Dementia Minds to share our team’s presentation video  with a large community of people living with dementia and their families. We are identifying other opportunities to share our findings with policymakers, administrators and healthcare leaders who can advocate for system-level changes to better support families financially through the journey of dementia.