Related Experiment Videos

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

Eugene Yeoh1,2, Monica Xavier1, Cassandra Buffington-Bates3

  • 1Geriatric Unit, Hospital Sungai Buloh, Sungai Buloh, Selangor, Malaysia.

Dementia (London, England)
|May 21, 2026
PubMed

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.

Keywords:
aged care health serviceallied health workforcecaregiver burdendementia carehealth policy

Related Concept Videos

Dementia01:30

Dementia

Dementia is a collective term for cognitive disorders primarily affecting memory, thinking, and reasoning. It is not a specific disease but a syndrome, with Alzheimer's disease being the most common cause, accounting for approximately 60-80% of cases. Other types include vascular dementia, Lewy body dementia, and frontotemporal dementia. Dementia affects millions worldwide, particularly older adults, though it is not a normal part of aging.
The progression of dementia is generally gradual.
Dementia l: Introduction01:22

Dementia l: Introduction

Dementia is an acquired, progressive syndrome characterized by a decline in multiple cognitive domains severe enough to impair daily functioning and reduce independence. Although memory loss is a central feature, the diagnosis requires additional deficits involving language, executive function, visuospatial skills, judgment, calculation, or abstract reasoning. These cognitive impairments reflect underlying neurodegenerative or vascular processes that gradually disrupt neuronal networks...
Documentation in Long-Term and Home Healthcare Setting01:29

Documentation in Long-Term and Home Healthcare Setting

Documentation in long-term care facilities and home healthcare settings is crucial for ensuring continuous, coordinated, and comprehensive care for patients. Each setting has its specific documentation processes and tools:
Long-Term Care Facilities
Alzheimer Disease l: Introduction01:29

Alzheimer Disease l: Introduction

Alzheimer disease is a chronic, progressive, and irreversible neurodegenerative disorder and the most common cause of dementia in older adults. It leads to gradual neuronal loss, causing cognitive decline, behavioral changes, and loss of functional independence.Risk Factors and EtiologyThe disease is multifactorial. Age is the strongest risk factor, with prevalence doubling every 5 years after age 65. Genetic factors include mutations in genes such as APP, PSEN1, and PSEN2, which are associated...
Alzheimer's Disease: Overview01:26

Alzheimer's Disease: Overview

Alzheimer's Disease (AD) is a continually advancing neurodegenerative disorder, distinguished by escalating memory loss, cognitive dysfunction, and dementia. The disease unfolds in three stages: preclinical, mild cognitive impairment (MCI), and dementia. Its onset is insidious, and the progression gradual, with the cause not well explained by other disorders.
The clinical diagnosis of AD hinges on the presence of memory and other cognitive impairments. Biomarkers, such as changes in Aβ and tau...
Nursing Process for Patient and Caregiver Teaching I: Assessment and Diagnosis01:24

Nursing Process for Patient and Caregiver Teaching I: Assessment and Diagnosis

The nursing process provides a clinical decision-making framework for patients and families to establish and implement a personalized care plan. Since part of the nurse's duties is to teach patients, the steps of the nursing process are the most effective way to approach instruction. The nursing process and the teaching-learning process are inextricably linked.
It is critical to determine the patient's learning needs during the assessment. Determination of learning needs compounds data from the...