A recent study has uncovered a concerning trend in Singapore's approach to dementia care, revealing that nearly all older adults with advanced dementia experience at least one potentially burdensome intervention during their final year. This eye-opening research, conducted by Duke-NUS Medical School, sheds light on an urgent need for better support systems and a reduction in unnecessary treatments at the end of life.
The study's findings are particularly significant given the projected rise in dementia cases in the Asia-Pacific region, which is expected to reach a staggering 71 million by 2050. However, our understanding of the last year of life with dementia has been largely shaped by Western contexts, leaving a critical gap in knowledge and care strategies for this region.
Published in the esteemed Journal of Gerontology: Medical Sciences, the study examined the care experiences of individuals with dementia in Singapore during their final year. The results were startling: a staggering 92% of older adults with advanced dementia underwent interventions such as feeding tubes or restraints, which experts argue may not improve comfort or prolong survival.
But here's where it gets controversial...
The study identified several key issues impacting the quality of end-of-life care for older adults with dementia living at home:
Overreliance on Invasive Medical Interventions: Nearly all older adults underwent taxing treatments in their final year, including antibiotics (49%), IV fluids (22%), and feeding tubes or restraints (74%). The use of tube feeding, in particular, was significantly higher than in Western contexts, often leading to the need for physical restraints. Clinical guidelines recommend a more compassionate approach of careful hand feeding.
High Hospitalization Rates: Almost half (48%) of older adults were hospitalized for at least one night during their final year, and 35% passed away in the hospital. These proportions are notably higher than in Western studies, where long-term care facilities are typically the primary place of death. Increased hospitalization can expose patients to costly and burdensome care experiences with limited clinical benefits.
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% even quit their jobs to care for their family members full-time. Caregivers dedicated an average of 42 hours per week, equivalent to a full-time job, with an estimated annual value of S$32,125.
Insufficient Caregiver Support: A majority of caregivers (62%) reported receiving inadequate information when making care or treatment decisions, and only 15% were given an estimate of how much longer their loved ones might live. This highlights critical gaps in caregiver communication and end-of-life preparedness.
The data was collected from a longitudinal cohort study titled Panel study Investigating Status of Cognitively impaired Elderly in Singapore (PISCES), where researchers surveyed family caregivers of individuals with advanced dementia every four months between 2018 and 2023.
While caregivers generally agreed (98%) that comfort was a primary care goal, a notable 31% of caregivers, mostly children of the older adults, prioritized prolonging life. This mismatch between stated values and actual care experiences underscores the need for a more holistic and compassionate 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, commented on the study's findings:
"Our research highlights a disconnect between caregivers' stated values and the reality of older adults' experiences in their last year of life. The frequent hospitalisations and widespread use of 'low-value' interventions among older adults living at home emphasize the need for a palliative approach at home to alleviate symptoms and reduce the burden on both older adults and their caregivers."
Dr. Andres further emphasized the importance of supporting and equipping family caregivers in an ageing society like Singapore, as reliance on them increases.
Associate Professor Chetna Malhotra, the senior author and Research Director at the Duke-NUS' Lien Centre for Palliative Care, added:
"In Asia, cultural values play a significant role in shaping approaches to caring for end-of-life individuals with dementia living at home. Children with strong filial values may prioritize helping their parents live longer over opting for a palliative approach. Therefore, strategies to promote palliative care must be driven by caregiver education and tailored to the region's unique cultural context."
The insights gained from this study are now being utilized to develop tools that support caregivers, such as CareBuddy, a mobile application promoting healthy and graceful ageing, and decision aids to help caregivers make informed care choices 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:
"These findings reveal the complex dynamics of dementia care in Asia, characterized by love, sacrifice, and difficult choices. As more older adults spend their final days at home, it is crucial that we develop care systems that demonstrate compassion not only to patients but also to their caregivers, who provide unwavering support."
This research, supported by the Singapore Ministry of Health through the National Medical Research Council (NMRC) Office and MOH Holdings Pte Ltd, is part of Duke-NUS' ongoing commitment to improving care for individuals with serious illnesses and their caregivers through groundbreaking discoveries and education.
