Effectively training professional caregivers to screen and refer persons with dementia and intellectual/developmental disability

Introduction By age 40, almost all people with Down syndrome, the most common cause of intellectual/developmental disability (I/DD), have neuropathological changes consistent with Alzheimer’s disease; by age 60, about half have dementia. Detecting dementia in persons with I/DD can be challenging because baseline cognitive impairment can be severe and because persons with I/DD may have difficulty reporting symptoms. The National Task Group Early Detection Screen for Dementia (NTG‐EDSD) was developed to aid detection of cognitive impairment in adults with I/DD. We implemented an educational curriculum to increase the ability of professional caregivers to screen for dementia in persons with I/DD using the NTG‐EDSD. Methods In November 2018 to April 2019, we held five training sessions for professional caregivers of persons with I/DD, partnering with various managed care organizations (MCO), aging and disability resource centers, adult day programs, and adult family homes. We assessed knowledge and attitudes at baseline, immediately after training, and one week, one month and six months after training. Results Participants (N=154) included direct care workers, case managers, healthcare providers, and other social services staff. Participants reported a marked increase in confidence in their ability to detect changes associated with mild cognitive impairment or dementia (p<0.001), decline in activities of daily living (p=0.02), and changes in behavior and affect (p<0.001). Satisfaction with the training was very high, and 94.0% of participants agreed or strongly agreed they could use the NTG‐EDSD tool with their clients. Following the training, one MCO we partnered with, serving 62 of 72 counties in Wisconsin, made the NTG‐EDSD a standard part of the assessment of adults with Down syndrome starting at age 40. Discussion A wide variety of social services and healthcare professionals can be effectively trained to screen for dementia in persons with I/DD using a standardized screening tool, the NTG‐EDSD. Satisfaction with the training was high, and use of the NTG‐EDSD was thought to be feasible. This educational intervention led to change in practice at a systems level within an MCO. Next steps could include assessing impact of such training on the quality of life and healthcare outcomes of persons with I/DD.