Creating a New Roadmap for Mental Health and Aging with Hemophilia
By Fiona Soltes
Aging adults with hemophilia represent a strikingly unique cohort: How do you plan for a future you never thought might come?
As advances in treatment are allowing individuals with hemophilia to live beyond their 30s and 40s for the first time in history, a host of other challenges has emerged—and not just physically.
“If they didn’t expect to age, they didn’t expect that they themselves might become caregivers, or that they would have to prepare financially, or think about a career that would give them security in retirement,” said Tam Perry, PhD, MSSW, associate professor, Wayne State University School of Social Work. It’s one thing to consider mental health among aging adults as a whole, she said. It’s another to consider the anxieties and stresses of an unexpected expanded lifespan.
Perry, a gerontological social worker, was part of the team that pulled together Navigating Time and Space: Experiences of Aging with Hemophilia, a project funded by the National Hemophilia Foundation. Also involved: Sara L. Schwartz, PhD, MSW, clinical associate professor, USC Suzanne Dworak-Peck School of Social Work; Dana Francis, MSW, University of California San Francisco; and medical sociologist Charles Kaplan, PhD, former associate dean, University of Southern California. (Find the project’s final report at https://dworakpeck.usc.edu/sites/default/files/2021-11/AgingWithHemophilia_FinalReporttoNHF_2021.pdf.)
Through a variety of interviews with service providers and aging persons with hemophilia—including but not limited to females with bleeding disorders, individuals with diverse socio-economic backgrounds and non-English speakers—the project revealed specific themes. There’s a need, for example, to continue sharing the history of this cohort, especially in terms of the HIV/AIDS crisis, as well as to understand traumas, grief and loss that took place earlier in life, and changing social roles related to gender.
Earlier this week, a preconference session was aimed at social work professionals, sharing findings from the project to increase awareness and understanding, and to explore recommendations and best practices. But there’s also a Saturday morning consumer session. Healthy Horizons: Mental Health and Aging Adults will include Perry, Schwartz and Mosi Williams, PsyD, a longtime bleeding disorders volunteer, public school counselor and nonprofit social worker. It's part of the Mental Health track for consumers, new to the Bleeding Disorders Conference this year.
The hope, Perry said, is that attendees will come away knowing that they’re not alone. Even pioneers need support, she said. And support is available. The session will include strategies, resources and tools for aging adults and those who care for them.
“Because these are pioneers, there’s no roadmap to aging,” Perry said. “That was certainly NHF’s interest in this, and our interest in it.” It has been important to document what those involved say it’s like, she said, but also to have the conversations that allow the roadmap to be created. ■
Saturday, 10:15 AM - 11:15 AM
Consumer – Mental Health
GRBCC: 362 ABDE (In-person only)