Cultural adaptation of the serious illness conversation guide for caregivers of persons with dementia in Singapore.

introductionGoals-of-care (GOC) discussions are often delayed or uninitiated for people with dementia, potentially contributing to inappropriate end-of-life treatment. The Serious Illness Conversation Guide (SICG) facilitates structured GOC discussions about patient values and care preferences, but a dementia-specific Guide adapted to the Asian cultural context has yet to be developed. This study aimed to adapt and iteratively revise the SICG-C, and assess its acceptability among caregivers of people with dementia.

methodsWe adapted the SICG for caregivers of people with dementia in Singapore using a three-phase, approach. Phase 1 involved adapting the patient-facing SICG to caregiver-facing language (version 1). In Phase 2, we iteratively tested the guide with 6 and 13 caregivers in 2 rounds of interviews to derive the final version of the Guide. In Phase 3, 50 caregivers rated each SICG-C item from Versions 1 and 3 using a structured questionnaire, with presentation order alternated to minimise order effects.

resultsSixty-nine caregivers were recruited in this study. Qualitative interviews revealed that caregivers valued professionalism and reassurance from clinicians, while also emphasising their own experiential knowledge as distinct from clinical expertise. Many struggled to articulate their loved ones' priorities due to cognitive decline and the absence of prior discussions, often expressing uncertainty about whether their assumptions reflected what their loved ones would have wanted. Caregivers were sensitive to language implying poor prognosis and preferred phrasing that conveyed continuity of care and partnership. None of the caregivers had been informed by their loved ones of their goals and priorities, reaffirming the value of the SICG-C. In the final survey (n = 50), caregivers showed a strong preference for Version 3 over Version 1, with 21 of 22 items rated significantly higher (all p<0.001). The final SICG-C was rated highly acceptable.

conclusionThe SICG-C enables clinicians to initiate timely, values-based GOC discussions with caregivers of people with dementia. Its structured, sensitive language addresses caregiver concerns and may be used to support proactive care planning in dementia. Further research is needed to evaluate implementation in routine clinical practice.