Alzheimer's and dementia, formidable adversaries, relentlessly chip away at memories and cognitive abilities, leaving individuals dependent on round-the-clock care. Distinguishing between the two, Alzheimer's is a degenerative brain disease that leads to dementia, often emerging in one's mid-60s, casting a pressing concern over older adults and their families. This debilitating condition not only inflicts emotional strain but also exerts a substantial financial burden.
At the forefront of alleviating the anguish of Alzheimer's and dementia patients in Johor Bahru stands the Johor Bahru Alzheimer's Disease Support Association, or JOBADA.
Established in 2001 by the psychogenetic team of Sultanah Aminah Hospital, led by Dr. Suraya Yusoff, JOBADA became a registered entity in 2004, with initial funding from the Alzheimer's Foundation of Malaysia (ADFM). Dr Suraya is still an advisor to JOBADA.
The Haven for Alzheimer's Patients
Their daycare centre is central to JOBADA's mission, nestled in the heart of Taman Dato' Onn in Larking, Johor Bahru. This detached double-storey house serves as a sanctuary where patients spend their days in the company of others facing similar battles. Their basic needs are met with utmost care, ensuring they experience comfort and dignity.
The centre caters to physical needs and provides a platform for emotional expression. "We take the time to listen to their stories and allow them to express their concerns, as they tend to remember past events more clearly than the present or future," elucidates Mr Soorian Muniandy, the president of JOBADA. Beyond essential services, the centre offers a range of recreational activities, enriching patients' lives with games, sing-alongs, dancing, and other stimulating pursuits.
Challenges in the Wake of COVID-19
While the centre is a beacon of hope, its operations face substantial financial strain. With a monthly cost of RM15,000, covering staff salaries, utilities, and transportation, sustaining this vital service remains a challenge. Despite their critical role, JOBADA receives no government funding, neither at the State nor Federal level.
They also pay utilities at commercial rates even though they are a registered NGO and their letters appealing for domestic rates have had no response.
Soorian Muniandy expresses his concern, "The Federal government has spent millions of Ringgit on other diseases, but for the last two years, we have not received any grants from them.
"The Welfare Ministry's annual grant of RM15,000 was also discontinued two years ago without explanation.
This stark reality underscores the organization's reliance on public generosity, emphasizing the need for sustained support.
A Plea for Recognition and Support
In a recent report featured in NST on June 6, 2022, the Alzheimer's Disease Foundation of Malaysia (ADFM) shed light on a pressing concern: the staggering population of individuals grappling with advanced dementia, necessitating round-the-clock care. Estimates indicate this number hovers between 204,000 to 264,000. Shockingly, projections unveiled by ADFM suggest a threefold surge, catapulting from 637,500 to 825,000 by the year 2050. As reported in the article, this sharp escalation is intrinsically tied to the nation's swiftly ageing demographic.
While specific statistics for Alzheimer's and dementia cases in Johor remain elusive, experts like Soorian contend that the prevalence is notably significant, particularly among those aged 65 and above. The gravity of this situation underscores the urgency for heightened awareness and robust support systems for affected individuals and their families.
As the population grapples with a growing number of Alzheimer's and dementia cases, the need for centres like JOBADA becomes increasingly critical.
Soorian Muniandy fervently appeals, "My humble request to the Federal and state governments is to not ignore sufferers of these two diseases."
He stresses the imperative of concerted efforts and strategic planning to tackle this pressing issue and pleads for the grant to be reinstated and increased and for more daycare centres to be planned for Johor districts
JOBADA, a lifeline for those navigating the labyrinth of Alzheimer's, continues to be a source of solace, camaraderie, and purpose. In the face of funding challenges exacerbated by the COVID-19 pandemic which is still being felt, this association remains resolute in its commitment to serving those most need it. The escalating numbers underscore the urgency of recognising and supporting organizations like JOBADA in their tireless pursuit of providing care and hope to Alzheimer's and dementia patients in Johor Bahru.