BRIDGING BRAIN HEALTH AND COMMUNITY TRUST: A COMMUNITY-ENGAGED PROGRAM FOR DEMENTIA AWARENESS AND EARLY DETECTION IN LOS ANGELES COUNTY

Sep 28, 2026

Uploaded by Rhys

The study addresses feeding challenges in advanced dementia and the complex decisions faced by family caregivers, especially within Chinese American communities. It examines tube-feeding knowledge, attitudes, and decision-making needs, using a multi-method design with a 63-participant survey and qualitative interviews involving 21 caregivers and 13 healthcare providers. Findings highlight limited tube-feeding knowledge, uncertainty in end-of-life scenarios, harmony-oriented family decision preferences, and misunderstandings about hand feeding. Results guided a culturally adapted decision aid and an upcoming pilot on feasibility, acceptability, and preliminary efficacy.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages1

Reading Time3 min

AccessFree to download

Study focus: dementia feeding decisions

Multi-method design and participants

Survey findings and end-of-life preferences

Qualitative themes and culturally informed communication

416 Innovation in Aging, 2025, Vol. 9, No. S2 Abstract citation ID: igaf122.1416a BRIDGING BRAIN HEALTH AND COMMUNITY TRUST: A COMMUNITY-ENGAGED PROGRAM FOR DEMENTIA AWARENESS AND EARLY DETECTION IN LOS ANGELES COUNTY Mirella Diaz-Santos, University of California, Los Angeles, Los Angeles, California, United States Feeding difficulties are common among individuals with advanced dementia. Dementia family caregivers have to make difficult decisions about feeding options. Despite limited clinical benefit, over 50% of Chinese individuals with advanced dementia receiving tube-feeding. Little is known about Chinese American dementia caregivers’ attitudes towards tube feeding and their decision-making needs regarding feeding options. In collaboration with CaringKind, a community agency serving dementia caregivers in NYC, we conducted a multi-method study among Chinese American dementia caregivers consisting of an original survey to capture knowledge/attitudes about feeding decisions and a qualitative descriptive study to inform a culturally adapted decision aid. We calculated descriptive statistics for quantitative data and used thematic analysis for qualitative data. The survey (n = 63) showed that participants had limited knowledge about tube feeding; 35% opted for tube feeding in an end-of-life scenario, while 41% were uncertain. Qualitative interviews with 21 Chinese American dementia caregivers and 13 healthcare providers indicated that: 1) caregivers value family-based and harmony-oriented decision-making and often misunderstand that careful hand feeding equates to starvation; and 2) Chinese American persons with dementia prefer indirect communication regarding their end-of-life care wishes. Based on study results, we culturally adapted an appropriate decision aid titled “Making choices: feeding options for patients with dementia” successfully used with dementia caregivers. We are collecting feedback from caregivers and health care providers to make refinements. Next, we will pilot test the feasibility, acceptability, and preliminary efficacy of the culturally adapted decision aid intervention to better address the needs of our caregiver group.

FAQs

What problem does the study focus on regarding dementia care?

It focuses on feeding difficulties in advanced dementia and the difficult feeding-option decisions that family caregivers must make, especially regarding tube feeding.

How was the study conducted and who participated?

The researchers used a multi-method approach: an original survey of 63 Chinese American dementia caregivers and qualitative interviews with 21 caregivers plus 13 healthcare providers.

What key findings shaped the decision aid?

Participants showed limited knowledge about tube feeding, many were uncertain in end-of-life scenarios, caregivers valued family-based harmony-oriented decision-making, and misconceptions linked careful hand feeding with starvation.

What is the next step after the culturally adapted decision aid was created?

The team is collecting feedback to refine the decision aid and will pilot test feasibility, acceptability, and preliminary efficacy of the intervention.

Sep 28, 2026

Uploaded by Rhys