A recent study conducted by researchers at Duke-NUS Medical School has highlighted a concerning trend in the care of older adults with advanced dementia in Singapore. The research indicates that over 90% of these individuals experience at least one potentially burdensome medical intervention during their final year of life. This underscores an urgent need for improved strategies to support families and minimize unnecessary medical treatments at the end of life.
The study, published in the Journal of Gerontology: Medical Sciences, reveals that the number of people living with dementia in the Asia-Pacific region is projected to reach 71 million by 2050. Despite this alarming statistic, much of the existing research on end-of-life care for dementia patients has been primarily conducted in Western contexts, leaving a gap in understanding the unique challenges faced in Asian settings.
Key Findings on End-of-Life Care
The study examined the care experiences of individuals with dementia in their last year of life, revealing some troubling statistics. Specifically, it found that 92% of older adults with advanced dementia underwent burdensome interventions, including the use of feeding tubes and physical restraints—methods that experts argue do not enhance comfort or survival.
Among the notable findings, the researchers reported the following key issues affecting the quality of care:
– **Overreliance on Interventions:** Nearly all participants experienced significant interventions, with 49% receiving antibiotics, 22% receiving intravenous fluids, and 74% subjected to feeding tubes or restraints. The frequency of tube feeding was significantly higher in Singapore than in Western contexts, often necessitating the use of restraints to prevent removal.
– **High Hospitalization Rates:** Approximately 48% of older adults were hospitalized at least once in their final year, with 35% dying in a hospital setting. These figures are notably higher than those reported in Western studies, where long-term care facilities are more commonly the setting for end-of-life care.
– **Burden on Caregivers:** Informal caregivers, primarily family members, shouldered a substantial workload. The study found that 42% of caregivers provided at least 60% of total care, with 30% having to leave their jobs to do so. The average weekly care commitment reached 42 hours, equating to an annual economic burden of approximately S$32,125 for caregivers.
– **Inadequate Support for Caregivers:** A significant majority, 62%, reported a lack of sufficient information when making care decisions, and only 15% were informed about their loved ones’ life expectancy. This gap highlights critical issues in communication and preparedness for end-of-life care.
Implications for Care Practices
According to Dr. Ellie Bostwick Andres, the first author of the study and a senior research fellow at the Lien Center for Palliative Care, the findings reveal a disconnect between caregivers’ values and the reality faced by older adults. She noted, “Frequent hospitalizations and the widespread use of interventions generally deemed ‘low-value’ among older adults living at home highlight the need to adopt a palliative approach at home to alleviate symptoms and minimize burden.”
The cultural context of caregiving in Asia also plays a significant role in shaping end-of-life decisions. Associate Professor Chetna Malhotra, the senior author and research director at Duke-NUS, pointed out that strong filial values often lead children to prioritize prolonging life over palliative care. She emphasized the importance of tailoring palliative care strategies to align with regional cultural values and caregiver education.
In response to these findings, the research team is developing tools to better support caregivers. This includes CareBuddy, a mobile application designed to promote healthy aging and assist caregivers in making informed decisions regarding the care of their loved ones.
Professor Patrick Tan, Dean-designate and Senior Vice-Dean for Research at Duke-NUS, commented on the human aspect of dementia care in Asia, stating, “These findings reveal the human reality of dementia care—defined by love, sacrifice, and difficult choices. As more older adults spend their final days at home, it is critical to build systems of care that show compassion not only to patients but also to the caregivers who sustain them.”
The insights from this study serve as a clarion call for healthcare systems to rethink how they approach end-of-life care for older adults with dementia, ensuring that both patients and their caregivers receive the support they need during this challenging time.
