Older family caregivers and health professionals of adults with intellectual disabilities: Qualitative results of the first-phases of the adaptation of the Savvy Caregiver Program through the ADAPT-ITT model

Adults with intellectual disabilities are living longer, leading to an increasing need for older family caregivers to provide long-term care. To date, many studies have focused primarily on interventions to support caregivers of children with disabilities and elderly with dementia. For this reason, this study focuses on adapting the Savvy Caregiver Programme. The adaptation was conducted through the ADAPT-ITT model, and involved 15 family caregivers and 22 health professionals. The study addresses the initial phases of the model. The first phase consisted of a needs analysis of family caregivers. The second phase involved a decision-making process regarding the intervention. The third phase employed a pre-testing methodology to assess the original intervention. Later phases, which are not reported in this study, help to evaluate the effectiveness of the adapted intervention. Caregivers and professionals expressed interest in the intervention, although it only partially addressed their reported needs. The program was originally developed for caregivers of elderly with dementia. Some of the needs it addresses are relevant to this population, but other aspects do not align. As a result, the program was adapted to better meet the needs of older family caregivers (over 60 years of age) of adults with intellectual disabilities. Key differences include the duration of caregiving and the level of expertise: in the case of disabilities, caregiving is often lifelong, and caregivers tend to be experts in disability. In conclusion, the study, which used a co-creation approach, underscores the need for a deeper understanding of caregiving for adult with disability.