Improving Decision-Making about Feeding Options in Dementia

Feeding problems are common in advanced dementia, triggering decision-making about options of tube feeding, assisted oral feeding, and feeding for comfort only. Shared decision-making is the desired ethical standard for treatment decisions with uncertain benefit, but it is rare for tube feeding. Decision aids provide structured information about a clinical choice, including clear delineation of options, presented with the pros and cons, and guidance for how to make a choice. Content is purposefully balanced and evidence-based. In the Improving Decision Making about Feeding Options in Dementia study, a team of investigators developed and tested a decision aid for surrogate decision-makers for patients with advanced dementia, and found it effective to improve knowledge, reduce decisional conflict and increase communication about feeding options with providers. The Improving Decision Making about Feeding Options in Dementia study was funded by the National Institutes of Health: National Institute for Nursing Research R01 NR009826. The funding source had no role in the design and conduct of the research, and does not directly endorse the decision aid.

How to use this decision aid:

If you are a health professional working with patients with dementia – this decision aid can help to prepare and educate families who are distressed by feeding problems in dementia care.  Encourage family members to view the decision aid before they have a care plan discussion or meet with the patient’s physician.  Simply give them the link – www.med.unc.edu/pcare/campus-palliative-care-sites-1/improving-decision-making-about-feeding-options-in-dementia – or let them view it on a computer while visiting your office or nursing home.

If you are a family member for someone who has advanced dementia - you can listen to this decision aid anytime you are concerned about feeding problems such as choking, weight loss, or watching someone who seems to struggle to take in food and drink.  The information is designed to help you learn about feeding problems, and learn more about how these problems can be helped by others who help the person with dementia.

Improving Decision-Making about Feeding Options in Dementia from Kathryn Wessell on Vimeo.