Singapore's Aging Dilemma: Balancing Comfort and Interventions for Older Dementia Patients
A recent study by researchers from Duke-NUS Medical School has shed light on the challenging reality faced by older adults with advanced dementia in Singapore. The findings reveal a concerning trend: almost all community-dwelling seniors with dementia experience burdensome interventions in their final year of life, highlighting an urgent need for innovative strategies to support families and reduce unnecessary end-of-life interventions.
As the global population ages, the number of individuals living with dementia in the Asia-Pacific region is projected to soar to 71 million by 2050. However, our understanding of the final year of life with dementia is primarily based on studies conducted in Western contexts, which may not fully reflect the unique challenges faced by Asian communities.
The study, published in the Journal of Gerontology: Medical Sciences, focused on the care experiences of individuals with dementia in their last year of life in Singapore. It found that a staggering 92% of older adults with advanced dementia endured burdensome interventions, such as feeding tubes or restraints, which experts suggest may not significantly improve comfort or survival.
The survey revealed several key issues affecting the quality of end-of-life care for older adults with dementia living at home:
Overreliance on Burdensome Medical Interventions: The study found that nearly all older adults experienced taxing interventions in their final year, including antibiotics (49%), IV fluids (22%), and feeding tubes, restraints, or both (74%). The use of feeding tubes was notably higher in Singapore compared to Western contexts, and tube feeding often necessitates the use of physical restraints to prevent tube removal. Clinical guidelines emphasize the importance of hand feeding over tube feeding.
High Hospitalization Rate: Almost half (48%) of older adults were hospitalized for at least one night in their final year, and 35% passed away in the hospital. These hospitalization rates are significantly higher than in Western studies, where long-term care facilities like nursing homes are the primary place of death. Hospitalization can expose patients to taxing and costly care with limited clinical benefit.
Heavy Burden on Informal Caregivers: Family members bore the brunt of care, with 42% providing at least 60% of total care for their loved ones with dementia. A staggering 30% quit their jobs to provide this level of care, and caregivers averaged 42 hours of care per week, equivalent to an annual wage of S$32,125. This highlights the significant emotional and financial toll on family caregivers.
Insufficient Caregiving Support: A majority of caregivers (62%) reported receiving inadequate information when making care or treatment decisions, and only 15% were informed about their loved ones' potential remaining lifespan. These findings underscore critical gaps in caregiver communication and end-of-life preparedness.
The data was collected from the Panel study Investigating Status of Cognitively impaired Elderly in Singapore (PISCES), a longitudinal cohort study that surveyed family caregivers of individuals with advanced dementia every four months between 2018 and 2023.
Despite the overwhelming agreement among caregivers (98%) that comfort was a primary care goal, nearly a third (31%) of caregivers, mostly children of the older adults, considered prolonging life a priority. This discrepancy between caregivers' stated values and the reality of their loved ones' experiences highlights the need for a more comprehensive approach to end-of-life care.
Dr. Ellie Bostwick Andres, the first author of the paper and a senior research fellow from the Lien Centre for Palliative Care at Duke-NUS, emphasized the importance of a palliative approach at home to alleviate symptoms and minimize the burden on older adults and their caregivers.
As the reliance on family caregivers increases in an aging society like Singapore, Dr. Andres calls for more support and resources to empower family caregivers to provide compassionate care at home. This includes educational programs, decision aids, and tools like CareBuddy, a mobile application designed to promote healthy and graceful aging.
Associate Professor Chetna Malhotra, the senior author and Research Director at the Lien Centre for Palliative Care, highlighted the cultural influences on end-of-life care in Asia. She noted that children with strong filial values may be more inclined to prioritize prolonged life over a palliative approach, emphasizing the need for region-specific strategies to promote palliative care.
The study's insights are being utilized to develop tools that support caregivers, including CareBuddy, a mobile app that encourages healthy and graceful aging, and decision aids to help caregivers make informed care decisions for their loved ones.
Professor Patrick Tan, Duke-NUS' Dean-designate and Senior Vice-Dean for Research, emphasized the human reality of dementia care in Asia, defined by love, sacrifice, and difficult choices. He stressed the importance of building compassionate care systems that support not only patients but also their caregivers, who play a vital role in sustaining their loved ones during their final days.
