Dementia, a shared burden for patients and caregivers

Caregivers of dementia patients need substantial support and recognition, as understanding, encouragement, and validation of their feelings are crucial for their well-being and motivation.

KPJ Sentosa KL Specialist Hospital, Consultant Physician Geriatrician and Associate Professor Dr. Yau Weng Keong stressed the immense challenges caregivers face when managing dementia patients, particularly due to behavioural issues like aggression and social withdrawal.

He added that caregivers require strong support from their family, friends, and the healthcare system.

“Managing dementia is increasingly complex, and unfortunately, the prevalence of the condition is rising steadily, making it a growing and costly concern.

“It impacts every aspect of life, social, financial, and healthcare. The real issue is that caregivers themselves often become overwhelmed. Who is there to support them? This crucial aspect is frequently overlooked,” he said when contacted recently.

Dr Yau said that caregivers and healthcare providers, including himself, often face significant challenges due to limited resources and funding while trying to meet the needs of dementia patients.

He stressed the importance of involving the entire family in the care process, ensuring they support the primary caregiver, as the burden of the disease can be overwhelming. Dr Yau also highlighted the importance of guidelines that address caregiver support, legal and ethical issues, end-of-life planning, and appropriate referrals.

Dr Yau highlighted the difficulty of coping with dementia care, often exacerbated by misunderstanding and blame toward patients. He added the scarcity of support services but mentioned that the Alzheimer Foundation offers centres for temporary care, giving caregivers essential breaks, whether for a day or a week.

“Caregivers need substantial support to recognise their value and stay motivated.

“We must acknowledge their feelings and conditions, involve the entire family, and ensure they receive encouragement and assistance from both their family and the healthcare system,” he added.

In a recent podcast episode on Sinar Daily’s YouTube channel, caregiver Faiza Alaina, 33, shared her experience with dementia. Married with a son and the youngest of four siblings, Faiza’s mother, who is 66, suffers from dementia.

Faiza emphasised that dementia impacts the entire family. She described it as a ‘family disease’ that demands more than just patience. The constant emotional rollercoaster, combined with the exhaustion of balancing work and caregiving, often leads to frustration and stress.

She added that answering repeated questions and managing her mother’s condition can sometimes lead to raised voices and moments of impatience.

“To manage my mother’s needs, like her meals, we take turns. Each week, one of us my sister, brother, and then myself handles her care. This rotation gives us each a week of respite.

“If I were an only child, I’d probably go crazy. Thankfully, with my siblings sharing the responsibility, I get some breaks and don’t have to deal with everything alone,” she said in the video.

She added that after developing dementia, her mother seemed to regress to a child-like state. She struggles with handling her emotions and feelings, has difficulty eating properly, and forgets how to dress herself. Even though she is an adult, she still needs her mother.

In the meantime, Dr Yau stressed that Malaysia needs increased education and awareness about dementia, as well as guidance on how to effectively manage and support dementia patients.

He also mentioned that their clinic provides resources for caregivers, including online materials and a prepared booklet. He is now working with Taylor’s University to print and distribute this booklet, offering practical tips for dementia care to all visitors.

"Currently, our services are limited to major towns, and some areas lack access to geriatricians, which creates limitations.

“Neurologists may diagnose dementia but are often busy with other responsibilities. Psychiatrists address behavioural issues like hallucinations and agitation.

“Geriatricians, however, offer a more holistic approach to managing all aspects of dementia care," he explained the limitations of geriatricians in Malaysia.

He added that there are only about 60 geriatricians across the country, with some in private practice and some in universities. Dr. Yau said government has fewer than 30, which is inadequate where in Malaysia, dementia is not always clearly labelled, with many still referring to it broadly as heart disease or other conditions.

He highlighted that it is contrast, in the US, which is more specific, with Alzheimer’s identified as a cause of death.

Dr. Yau also shared that during his tenure as Asia-Pacific Regional Conference, chairman in 2001, they introduced training programmes for various professionals, including police officers, bus drivers, and college staff, focusing on how to handle individuals with dementia in Taiwan.

He said, there extensive training is provided to university students and other relevant groups to ensure they can recognise and appropriately manage dementia patients. For instance, bus drivers and police officers are trained to handle situations involving dementia patients effectively.

Dr. Yau urged that Malaysia needs similar training programmes to better equip individuals who interact with dementia patients.

Dr. Yau Weng Keong is a leading Consultant Physician Geriatrician at KPJ Sentosa KL Specialist Hospital, dedicated to elderly care. Previously, he was Head of Geriatric Services at Hospital Kuala Lumpur (HKL), where he expanded services nationwide, except in Terengganu and Perlis.

His qualifications include an MD from USM, MRCP(UK), CMIA(Msia), and FRCP(Lond). His past roles also include leading Geriatric Services at the Ministry of Health, Malaysia, heading HKL's Medical Department, and lecturing at Taylors University's School of Medicine.