Building a Dementia-Ready Workforce in Malaysia: Family Caregivers’ Insights

Malaysia's rapid population aging has intensified the need for dementia care systems that extend beyond hospital-based services. This qualitative study explored the experiences and support needs of family caregivers of persons living with dementia (PLWD) in Malaysia, with the aim of informing dementia workforce development and para-professional training. Semi-structured interviews were conducted with 67 caregivers attending the geriatric unit of a public hospital in Selangor. Responses to open-ended questions on social support, emotional impact, communication with health professionals, economic consequences, and unmet needs were analyzed using structured qualitative content analysis, supported by a human-large language model (LLM) parallel coding approach. Caregivers described substantial emotional burden, including exhaustion, anxiety, social isolation, and feelings of being trapped in a continuous caregiving role. Many reported fragmented information from healthcare professionals, limited awareness of available welfare schemes, and inadequate access to respite, home-based support, and caregiver education. Caregiving also produced major financial strain through lost employment, reduced working hours, depleted savings, and recurring out-of-pocket costs. Across domains, caregivers expressed a strong need for affordable day care, home-based therapy, psychological support, financial assistance, and practical training. These findings indicate that dementia care in Malaysia remains heavily dependent on family caregivers who are expected to absorb unmet system demands with limited formal support. Strengthening the dementia care workforce through structured para-professional roles may help bridge gaps in caregiver education, welfare navigation, post-discharge support, and community-based care. The study underscores the need to align national aging and dementia policies with workforce development strategies that better support both persons living with dementia and the families who care for them.