Direct care
Direct care questions test clinical judgment at the point of care: recognizing change early, adapting technique to the person, and refusing to accept "that's just how she is" as an explanation for a new symptom. The person with an intellectual or developmental disability often presents illness atypically, and the exam rewards nurses who look past the disability.
Core content
- Baseline first. Know the person's usual pattern of eating, sleeping, bowel function, mood, gait, and communication. Change is measured against that baseline.
- Syndrome-specific risk. Down syndrome: atlantoaxial instability (avoid forced neck hyperextension or flexion during care and transfers; report new neck pain, gait change, or incontinence), hypothyroidism, higher risk of early-onset Alzheimer disease. Cerebral palsy: aspiration, reflux, constipation, contractures, hip pain. Fragile X: anxiety, mitral valve concerns. Epilepsy is common across syndromes and interacts with sleep, medications, and injury risk.
- Pain in nonverbal adults. Use an observational tool plus caregiver report; look for guarding, facial change, breath-holding, aggression, sleep change, refusal of preferred activity. Treat the cause, not the behavior.
- Routine care done well. Skin integrity and pressure relief, repositioning schedules, oral hygiene, bowel and bladder programs, menstrual supports, mealtime positioning and aspiration precautions, hydration.
Worked example
A 42-year-old with Down syndrome and mid-stage dementia begins refusing meals and has lost 4 pounds in a month. The weak answer is "progressive dementia." The exam answer is a structured search: screen for dysphagia and silent aspiration, examine the mouth for dental pain or candidiasis, review the bowel record for constipation, review recent medication changes for sedation or appetite effects, screen for depression and pain, and check that the mealtime environment and staffing support the person's changed abilities. Only after those are addressed is dementia the explanation.
Traps
- Diagnostic overshadowing: attributing every new behavior to the disability.
- Accepting "behavior" as a diagnosis and stopping the workup.
- Missing constipation, dental pain, or reflux as the driver of agitation.
- Charting "ate well" instead of quantities and observations.
- Failing to weigh monthly or to trend weights.
- Ignoring aspiration precautions because the person "has always coughed at meals."