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

Authors

Tim Luckett, University of Technology Sydney
Dimity Pond, School of Medicine and Public Health
Geoffrey Mitchell, The University of Queensland
Lynnette Chenoweth, UNSW Medicine
Ingrid Amgarth-Duff, University of Technology Sydney
Domenica Disalvo, University of Technology Sydney
Jane Louise Phillips, University of Technology Sydney
Elizabeth Beattie, Queensland University of Technology
Patricia Mary Davidson, University of Wollongong
Georgina Luscombe, The University of Sydney School of Medicine
Stephen Goodall, University of Technology Sydney
Meera Agar, University of Technology Sydney

Publication Name

Collegian

Abstract

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.

Open Access Status

This publication is not available as open access