A recent study has shed light on a concerning issue in Singapore's healthcare system, revealing a widespread reliance on potentially burdensome interventions for older adults with advanced dementia. This eye-opening research, conducted by experts at Duke-NUS Medical School, highlights a critical gap in end-of-life care and the urgent need for change.
The study, published in the Journal of Gerontology: Medical Sciences, focused on the care experiences of individuals with dementia during their final year of life in Singapore. The findings paint a stark picture: almost all community-dwelling older adults with advanced dementia underwent at least one intervention that may not improve comfort or survival.
But here's where it gets controversial...
The study identified several key issues affecting the quality of end-of-life care for these individuals. Firstly, there was an overreliance on medical interventions, with nearly all older adults experiencing taxing treatments like antibiotics, IV fluids, and feeding tubes or restraints. The use of feeding tubes, 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.
Secondly, the hospitalisation rate was alarmingly high, with almost half of older adults admitted for at least one night during their final year, and a notable 35% passing away in hospital. This is significantly higher than in Western studies, where long-term care facilities are typically the primary place of death.
The burden on informal caregivers was also immense. Family members provided the majority of care, with many quitting their jobs to do so. Caregivers dedicated an average of 42 hours per week, equivalent to a full-time job, and an annual wage of S$32,125.
And this is the part most people miss...
Despite the heavy burden on caregivers, many reported feeling inadequately informed when making care decisions. Only a small percentage were given an estimate of how much longer their loved ones might live, highlighting critical gaps in 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 every four months between 2018 and 2023.
While comfort was a primary care goal for most caregivers, a significant number (31%) considered prolonging life a priority, mostly children of the older adults. This mismatch between stated values and actual care experiences underscores the need for a more holistic and palliative approach to end-of-life care.
Dr Ellie Bostwick Andres, the first author of the study, emphasised the importance of adopting a palliative approach at home to alleviate symptoms and reduce the burden on both older adults and their caregivers.
As the reliance on family caregivers increases in an ageing society like Singapore, the study's senior author, Associate Professor Chetna Malhotra, highlights the need for strategies driven by caregiver education and tailored to the region's cultural values.
The insights from this study are now being used to develop tools to support caregivers, such as the CareBuddy mobile application, which promotes healthy ageing, and decision aids to help caregivers make informed choices for their loved ones.
Professor Patrick Tan, Duke-NUS' Dean-designate, emphasises the human reality of dementia care in Asia, characterised by love, sacrifice, and difficult choices. As more older adults spend their final days at home, building compassionate care systems that support both patients and their caregivers is crucial.
This research, supported by the Singapore Ministry of Health, is part of Duke-NUS' ongoing commitment to improving care for individuals with serious illnesses and their caregivers through innovative discoveries and education.
