Project Summary:
In the U.S., approximately 1.4 million children and youth between ages eight-18 provide care to family members, yet they don’t receive formal caregiving guidance or training. This gap in support is especially critical for young people caring for family members with amyotrophic lateral sclerosis (ALS), as these caregivers navigate complex responsibilities that can include managing daily living activities and operating assistive devices. In Wisconsin alone, 545 individuals lived with ALS in 2023, and approximately one-third of ALS families rely on young caregivers to manage those individuals’ daily tasks.
Through this project, the University of Wisconsin-Milwaukee, led by Professor Melinda S. Kavanaugh, PhD, MSW, LCSW, will develop and evaluate YCare, a two-phase program designed to support youth caregivers ages 10-18 who assist family members living with ALS. The first phase consists of a day-long series of hands-on skill-building modules led by healthcare professionals, including neurologists, social workers, and therapists. The second phase provides ongoing support and training to address caregiver isolation and evaluate the long-term impact through surveys and interviews.
This project aims to decrease isolation among young caregivers while increasing their caregiving abilities and overall well-being, ultimately improving patient care and quality of life. The program will serve as a pilot with the potential to grow and support young caregivers across Wisconsin dealing with various conditions, including Alzheimer's disease, autism, and traumatic brain injury. Researchers hope to develop YCare into a program that can be replicated and implemented across the country and around the world.