Screening for Dementia among Adults with Intellectual Disability: Outcomes from a Pilot Study

Introduction: Screening for dementia among individuals with ID is important to identify individuals in need of care and support. The objective of this pilot study was to identify obstacles associated with screening and assessment of dementia among older adults with ID in a crisis-prone population. Method: The Early Detection Screen for Dementia (EDSD) was administered to eligible enrollees ages 50 years and older within the START (Systemic, Therapeutic, Assessment, Resources, and Treatment) program. Focus groups were carried out to understand the barriers to screening and diagnosis of dementia. Results: Of the 95 eligible enrollees, 63 participants had dementia screening tools completed. Obstacles identified through focus groups included difficulty differentiating changes from baseline function, competing priorities in this crisis-prone population, lack of access to providers, and an unclear understanding of the benefit or purpose of screening among some caregivers. START coordinators noted that the EDSD provided a helpful way to collect information and document changes in the enrollee’s functioning. Conclusions: The EDSD may be helpful for capturing potential dementia-associated changes overtime in crisis-prone adults with ID, though obstacles remain to the access of further evaluation for dementia.