Navigating dementia feeding decisions in Asia: a mixed methods study of caregivers.

Abstract

Background: Tube feeding is discouraged among older adults with advanced dementia; nevertheless, caregivers often find feeding decisions challenging to navigate.

Aim: This study aims to gain a comprehensive understanding of tube feeding among community-dwelling older adults with advanced dementia in Singapore and its relationship to older adult quality of life (QoL) and caregiver psychological distress.

Methods: We use a convergent mixed-methods design, synthesising analysis of qualitative caregiver interviews (n = 25) and two-year prospective, longitudinal cohort survey data (n = 215, 1018 observations).

Results: Findings from the qualitative interviews revealed caregivers' expectations of reduced QoL for older adults with feeding tubes and their own distress related to making feeding decisions and fears prompting plans to tube-feed. Sixteen percent of community-dwelling older adults with advanced dementia relied on feeding tubes during the two-year study period. Adjusting for potential confounding and using instrumental variables estimation, tube feeding was associated with reduced older adult QoL (P < .05) and increased caregiver anxiety and depression (P < .10).

Conclusion: Consistent with expert guidelines, we found that tube feeding was associated with significantly reduced QOL among older adults living with dementia and increased distress among caregivers relative to those of older adults without feeding tubes. Despite caregivers' recognition of reduced QOL associated with older adult use of feeding tubes, many expressed angst related to feeding choices. Our findings suggest the need for decision tools to support caregivers in making informed decisions concordant with their values.