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.