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DemCARE: Learn to Communicate Better With People Living With Dementia (PLWD)

"Even though the person living with dementia has changed, remember that the relationship remains the same.”- Dr Leela Koran

The number of older persons living with dementia (PLWDs) in Malaysia is expected to continuously rise from the current estimate of 8.5% (approximately 260,000 people) reported by the World Health Organisation (WHO). It may seem that dementia is discussed in the mainstream media more readily now. However, there is a lack of awareness in our community that is not merely part of normal ageing. Dementia is a health condition that results in changes in the brain of PLWDs which affect their communication. When this connection is not understood, barriers between PLWDs and their caregivers and even the public arise. In social settings, effective communication can reduce misunderstanding, stigma, and stress faced by PLWDs and their family members.

When the PLWDs are brought for consultations with medical practitioners, effective communication strategies are necessary for enhancing patient outcomes. In both the clinical and social settings, we know that communication is the most crucial component in dementia care. Recognising the importance of dementia care communication, a team of multidisciplinary experts including geriatricians, rehab physicians, and linguists have come together to develop the DemCARE toolkit specifically for the Malaysian population. The initial adaptation of the Demtalk toolkit developed by researchers from Newcastle University, UK gave us the multilingual resource that aimed to support the family caregivers in Malaysia. The present interdisciplinary project aims to produce a comprehensive online resource that is tailored to meet the needs of different stakeholders including family members, healthcare professionals, and the community in a more accessible format. The DemCare toolkit is based on relationship-centred care principles and will debut in Malaysian English, paving the way for subsequent Malay, Mandarin, and Tamil versions.

According to Dr. Leela Koran, lead researcher for the linguistics group, the updated content will also incorporate real-life evidence of best practices as well suggestions on overcoming challenges experienced by PLWDs, family caregivers, and healthcare professionals. This is expected to better support all the stakeholders in providing care for the PLWDs. The final relationship-centred care toolkit is expected to achieve a few ambitious goals which are:

  1. Improve the PLWD’s quality of life,

  2. Reduce the burden of care.

  3. Enhance communication strategies training for healthcare professionals.

  4. Foster a deeper understanding within the community regarding effective communication with PLWD.

The team will work with Kementerian Kesihatan Malaysia (KKM), Kementerian Pengajian Tinggi (KPT), and professional bodies like rehab centres and non-governmental organisations to increase the outreach of the toolkit. For their long-term goal, they aspire to collaborate with app developers to create a more interactive application to reach users from diverse backgrounds. The team envisions DemCARE becoming an integral component of Malaysia's National Dementia Action Plan strategies, making a meaningful impact on the lives of those diagnosed with dementia and their carers in this country.

Left: Lim Kai Shi, the student writer. Right: Dr Leela Koran, lead researcher for the linguistic group


Mr Lim Kai Shi.,

‘Sharing knowledge is the first step of humanity.’
I am Kai Shi, a Biomedical Science undergraduate who are passionate in sharing academic knowledges and stories to anyone who are interested (include the public). Currently, I am working on Parkinson’s disease genetic research, for those who are in similar field, I am open for connection!

Researcher featured:
Dr. Leela A/p Koran, Department of English, Language Faculty of Languages and Linguistics. Dr. Leela Koran is a linguistics researcher and content developer at Demtalk.

Copyeditor: Dr. Kumuthini Chandrasekaram, Research Officer, for BPP Universiti Malaya

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