Oral home care for adults with developmental disabilities: A survey of paid and family caregivers about roles and responsibilities

Policies and programs to address oral health disparities among adults with developmental disabilities (DD) require empirical information about daily home care in addition to dental services. Paid and family caregivers who accompany adults with DD to dental clinic appointments in a specialized statewide system are eligible to complete computer-assisted personal interview surveys. 404 caregivers supported by the state DD agency (85%) and 74 family caregivers (15%) have completed surveys to date.

The adults they assisted were diverse: 57% were male; 43% > age 50; 71% lived in state-supported community residences, 10% with their families, 9% independently and 8% in state-operated facilities. Ninety-five percent had intellectual, 54% communication, and 42% physical disabilities. Thirty-two percent were unable to let caregivers know about dental problems. Of the 95% with any natural teeth, 55% needed ‘hands-on-hands' or complete help with oral home care; 32% needed supervision/reminders.

Caregivers reported that toothbrushes (99%), toothpaste (99%) disposable gloves (91%) and floss (62%) were ‘always/often available'. More caregivers felt ‘very confident' to assist with toothbrushing (84%) and mouth rinsing (72%) than flossing (47%). Most (85%) had training in universal precautions. Of those providing direct assistance, 79% used disposable gloves, 10% face masks, and 7% safety glasses ‘always/often.' More caregivers rated patient-specific instructions (verbal, 76%; written, 75%) as ‘very useful' than other potential resources. These preliminary findings suggest that caregivers have varying levels of knowledge, confidence and skills about oral home care. Identifying methods to enhance oral home care would benefit caregivers and the persons with DD they support.