One of my favorite patients, Ms. Jean, visits my East Falls health center with her son Marquis every few months. I’m always inspired to see how patient he is with his mom and all he does and sacrifices for her. Ms. Jean is one of 350,000 individuals living with Alzheimer’s disease and other related dementias (ADRD) in Pennsylvania. Marquis, as his mother’s full-time, unpaid caregiver, handles her meals, hygiene, and toileting. He also manages her finances, medication, transportation, and housekeeping. Somehow, Marquis, a young man with a bright future, finds time to work and care for his siblings while providing excellent care to his mom.

Our health center’s social work team does its best to support Marquis and his mom. Sadly, many of the 400,000 or so caregivers of individuals with ADRD in Pennsylvania are unaware of the variety of services available to assist them, such as in-home support, respite care, Meals on Wheels, day programs, and support groups. Many families do not know the range of support services because there is no statewide agency in Pennsylvania with the capacity to work to prioritize supporting current families living with ADRD. No entity or task force exists either to plan to address the needs of the growing numbers of older adults in the commonwealth living with ADRD, which is expected to double by 2050.

When Pennsylvania Secretary of Aging Jason Kavulich and I met in my Manayunk legislative office over the winter, we discussed the lack of state support for families living with ADRD. We talked about the research showing that many ADRD caregivers have no training, feel unsupported, and struggle to access support while they face challenging behaviors like repetitive conversations, wandering, and aggression. We also discussed the research I completed as part of my dissertation at Penn, indicating that interventions supporting families living with ADRD made caregivers feel more confident in caring for their loved ones. Secretary Kavulich and I agreed that there was a need for a statewide infrastructure to support initiatives and services for families living with ADRD at a state level.

This spring, State Reps. Maureen Madden, Patty Kim, Steve Samuelson, and I introduced HB 2400 to create such a state division to support families with ADRD. Our bill, which had a Senate companion bill SB 840 by State Sen. Rosemary Brown, would establish a permanent division in the Department of Aging and a permanent task force to advise this department. Bolstered by nearly $2 million in state funds that we appropriated this July in the budget, this division would coordinate state agencies to determine how to work together best to support families living with Alzheimer’s and leverage private and public entities and federal dollars to assist families.

Our legislation passed both chambers of the legislature this fall, and I’m proud to say that on Oct. 16, Gov. Shapiro signed our bipartisan effort into law as Act 111 of 2024!

While many challenges remain for families living with ADRD, for the hundreds of thousands of Pennsylvania families living with ADRD like Ms. Jean and Marquis, help is on the way. And, I’m grateful to have helped work with Madden, chair of the state House Aging and Older Adult Services Committee, the Alzheimer’s Association, and the Shapiro administration to pass Act 111 of 2024 into law.

 To learn more about this new division and task force in the Pennsylvania Department of Aging, please visit pa.gov/aging.