A startling revelation has emerged from a recent study conducted by researchers at Duke-NUS Medical School in Singapore. The study, published in the Journal of Gerontology: Medical Sciences, sheds light on the burdensome care experienced by older adults with advanced dementia in their final year of life. Nearly all of these individuals face interventions that may not improve their comfort or survival, raising urgent concerns about the quality of end-of-life care.
The findings are particularly significant given the projected rise in dementia cases in the Asia-Pacific region, which is expected to reach 71 million by 2050. However, our understanding of end-of-life care for dementia patients has been largely informed by studies conducted in Western contexts. This study, focusing on Singapore, reveals a different and concerning reality.
Here's a breakdown of the key issues identified in the study:
Overreliance on Burdensome Medical Interventions: Almost all older adults with advanced dementia experienced taxing interventions in their final year. This included antibiotics (49%), IV fluids (22%), and feeding tubes or restraints (74%). The use of feeding tubes often leads to the need for physical restraints, which is a concerning practice. Clinical guidelines recommend hand feeding as a more compassionate approach.
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Heavy Burden on Informal Caregivers: Family members bear the brunt of care, with 42% providing at least 60% of the total care for their loved ones with dementia. Many caregivers (30%) even quit their jobs to care for their family members full-time. The average caregiving time amounted to 42 hours per week, equivalent to a full-time job, with an estimated annual wage value of S$32,125.
Insufficient Caregiver Support: A majority of caregivers (62%) reported feeling inadequately informed when making care or treatment decisions. 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 study surveyed family caregivers of individuals with advanced dementia every four months between 2018 and 2023 as part of the Panel study Investigating Status of Cognitively impaired Elderly in Singapore (PISCES).
While comfort was a primary care goal for most caregivers (98%), a significant proportion (31%) prioritized prolonging life, mostly among children of the older adults. This mismatch between stated values and actual care practices underscores the need for a more holistic approach to end-of-life care.
Dr. Ellie Bostwick Andres, the first author of the study, emphasized the need for a palliative approach at home to alleviate symptoms and reduce the burden on older adults and their caregivers. As reliance on family caregivers increases in an aging society like Singapore, more support and resources are needed to empower caregivers to provide compassionate care.
Associate Professor Chetna Malhotra, the senior author and Research Director at Duke-NUS' Lien Centre for Palliative Care, highlighted the influence of cultural values in Asia on end-of-life care. Children with strong filial values may prioritize prolonging their parents' lives over a palliative approach. This underscores the importance of caregiver education and regionally tailored strategies to promote palliative care.
The insights from this study are being used to develop tools to support caregivers, such as the CareBuddy mobile application 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, characterized by love, sacrifice, and difficult choices. As more older adults spend their final days at home, it is crucial to build compassionate care systems that support both patients and their caregivers.
This research, supported by the Singapore Ministry of Health and other funding bodies, is part of Duke-NUS' ongoing efforts to improve care for individuals with serious illnesses and their caregivers through innovative research and education.
