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

Andres, Ellie B; Chaudhry, Isha; Balasubramanian, Ishwarya; Poco, Louisa; Yap, Philip; Malhotra, Chetna; group, PISCES study

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.

SINGAPORE; INDEPENDENT living; PSYCHOLOGICAL distress; T-test (Statistics); RESEARCH funding; PATIENT-family relations; INTERVIEWING; QUESTIONNAIRES; MULTIPLE regression analysis; MEDICAL care; DECISION making; DESCRIPTIVE statistics; CHI-squared test; ANXIETY; ENTERAL feeding; BURDEN of care; LONGITUDINAL method; QUALITY of life; RESEARCH methodology; SENILE dementia; PSYCHOLOGY of caregivers; SOCIAL support; COMPARATIVE studies; CAREGIVER attitudes; FEEDING tubes; MENTAL depression; PATIENTS' attitudes; PSYCHOSOCIAL factors; OLD age

Age & Ageing, 2024, Vol 53, Issue 10, p1

0002-0729

Academic Journal

10.1093/ageing/afae232