Nutrition and hydration for people living with dementia near the end of life: A qualitative systematic review.
Yolanda Barrado-Martín, Lee Hatter, Kirsten J Moore and 6 others
PMID 33249602WHAT IT FOUND
Families and staff found feeding decisions in advanced dementia ethically hard.
Tube feeding was often seen as prolonging life or protecting rights, despite evidence it does not work. Comfort-focused eating, texture changes, routines, and knowing preferences were reported as supports.
Key findings
01Some families and practitioners saw artificial feeding as extending life, maintaining weight, or avoiding starvation, while the review notes evidence does not support it near end of life.
02Advance care plans were often not completed routinely, often did not mention eating and drinking, and some practitioners saw them as outdated when health and wishes changed.
03SLPs were reported to recommend oral intake even with high aspiration risk when wishes were known, comfort was valued, risk could be mitigated, and risk was documented or accepted.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPsWhat it means for RNs
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What it does not show
Only qualitative studies were included, so the review cannot show whether any strategy improves nutrition, hydration, comfort, survival, or family outcomes. The included studies varied in quality, no studies were excluded based on quality, and many did not report recruitment, data saturation, researcher-participant relationships, or analysis in detail. Most studies focused on practitioners in long-term care or medical settings, few included family carers at home, and no studies reported views of people with mild dementia, so patient preferences are underrepresented. Studies came mainly from the USA, the Netherlands and Belgium, and national financial, legal and cultural systems shaped artificial feeding decisions, so findings may not transfer to other settings. In some studies the term nurse may have included certificated and non-certificated staff, so nursing-specific findings may be mixed with other care roles.
Declared interests
The authors declared no conflict of interest. The funding source named in the paper was Marie Curie.
The easy way to misread this
Do not read this review as showing that tube feeding, texture modification, assisted feeding or environmental changes improve survival, weight, hydration or comfort. It synthesises qualitative views and experiences, not tested outcomes. Also do not treat artificial nutrition and hydration as evidence-based; the review notes evidence does not support it near end of life, while included studies report beliefs and practices.