Improving Decision-Making for Feeding Options in Advanced Dementia: A Randomized, Controlled Trial

Objectives To test whether a decision aid improves quality of decision-making about feeding options in advanced dementia. Design Cluster randomized controlled trial. Setting Twenty-four nursing homes in North Carolina. Participants Residents with advanced dementia and feeding problems and their surrogates. Intervention Intervention surrogates received an audio or print decision aid on feeding options in advanced dementia. Controls received usual care. Measurements Primary outcome was the Decisional Conflict Scale (range: 1–5) measured at 3 months; other main outcomes were surrogate knowledge, frequency of communication with providers, and feeding treatment use. Results Two hundred fifty-six residents and surrogate decision-makers were recruited. Residents' average age was 85; 67% were Caucasian, and 79% were women. Surrogates' average age was 59; 67% were Caucasian, and 70% were residents' children. The intervention improved knowledge scores (16.8 vs 15.1, P < .001). After 3 months, intervention surrogates had lower Decisional Conflict Scale scores than controls (1.65 vs 1.90, P < .001) and more often discussed feeding options with a healthcare provider (46% vs 33%, P = .04). Residents in the intervention group were more likely to receive a dysphagia diet (89% vs 76%, P = .04) and showed a trend toward greater staff eating assistance (20% vs 10%, P = .08). Tube feeding was rare in both groups even after 9 months (1 intervention vs 3 control, P = .34). Conclusion A decision aid about feeding options in advanced dementia reduced decisional conflict for surrogates and increased their knowledge and communication about feeding options with providers.