A study protocol to explore dementia care needs and preferences from the perspectives of persons with dementia and family caregivers in Malaysia

Background: Dementia is a growing public health issue in Malaysia, largely due to rapid population ageing. Despite this, the care needs and preferences of persons with dementia (PwD) and their family caregivers remain poorly documented. Existing care frameworks are often fragmented and lack coordination, limiting their effectiveness in supporting this population. This study protocol is to explore the needs and preferences of PwD and their family caregivers regarding dementia care, and develop the dementia care needs and preferences framework based on the perspectives of PwD and family caregivers. Methods: This study employs a qualitative research design. A total of 40 participants, comprising 20 PwD and 20 family caregivers, will be selected through purposive sampling from tertiary hospitals and community clinics in Kuantan, Pahang. Data will be collected through semi-structured interviews and supplemented with field notes. All interviews will be audio-recorded, transcribed verbatim, and analysed thematically using NVivo software. Results: The study will generate in-depth insights into the care needs and preferences of PwD and caregivers. The final findings are also intended to facilitate the development of a dementia care framework aligned with Malaysia’s Dementia Action Plan, which emphasises early diagnosis, risk reduction, and support for family caregivers. Conclusion: This research addresses a critical gap in dementia care in Malaysia. By incorporating the perspectives of both PwD and caregivers, the study aims to improve care delivery, and contribute to a more comprehensive dementia care framework