Eating and drinking-related care for persons with advanced dementia in long-term care

Background: Advanced dementia is a life-limiting illness that requires a palliative approach to care. Decline in eating/drinking represents a milestone in progression that warrants decision-making and planning of care. In long-term care (LTC), this is best conducted via family case conferences. Aim: To explore decision-making and planning regarding eating/drinking-related care in case conferences for persons with advanced dementia in LTC to inform future practice. Methods: A qualitative approach was taken, using observation of audio-recorded case conferences. Case conferences were conducted in 6 LTC facilities within the intervention arm of a cluster randomized controlled trial. Participants were LTC personnel, doctors, and families of persons with advanced dementia. Content was analysed for eating/drinking-related goals of care and the degree to which decision-making was shared. Findings: Thirty-two case conferences considered eating/drinking-related care. The goals included nutrition, hydration, weight gain and maintenance, food enjoyment, social interaction, and independence. Key considerations included secondary health issues impacting comfort, and tensions between food enjoyment versus nutrition and risk of aspiration. While families contributed essential information about eating/drinking history, sometimes decision-making was dominated by professionals and overlooked overall goals of care. Discussion: Shared decision-making regarding eating/drinking-related care for persons with advanced dementia in LTC should start with consensus on overall goals of care and include contributions to quality of life as well as risks. Family involvement should be supported beyond information-giving. Conclusion: Future studies are needed to identify the most sensitive and understandable ways for families of discussing eating/drinking-related decline in dementia.