Supporting Older Family Caregivers of Adults with Intellectual Disabilities: Adapting the “Savvy Caregiver Program” through the ADAPT-ITT Model

Abstract

The number of older family caregivers of adults with intellectual disabilities is increasing as people with disabilities are living longer. These caregivers often provide care over extended periods and face several concerns about the future. This topic is relatively new in research, which has traditionally focused on families with children with disabilities and their relationships with parents and siblings. Few specific interventions have been studied for older family caregivers of adults with disabilities. Therefore, this study aims to adapt the "Savvy Caregiver Program (SCP)", an intervention known for its benefits to caregivers, specifically for family caregivers aged 60 and older who care for adults with intellectual disabilities. The adaptation followed the first five phases of the ADAPT-ITT model, involving active participation from family caregivers, healthcare professionals, and topical experts in co-creation process. These phases included a need analysis for the new target group, pre-testing with the original version, creating the first adapted version, and conducting an analysis with feedback from topical experts. The results confirmed that older caregivers face challenges that impact several areas of their lives, including the quality of family life, strained relationships among family members, and feelings of loneliness and being overwhelmed by responsibilities. In conclusion, this study highlights the significance of a co-creation methodology in understanding the dynamics of older family caregiving for adults with intellectual disabilities. This approach ensures that interventions are tailored to the real-world experiences of caregivers. Given the complexities of caregiving, such collaborations are essential to better support caregivers and families.