Study shows over 90% of older adults with dementia undergo burdensome interventions in their final year

A new study by researchers from Duke-NUS Medical School has revealed that almost all community-dwelling older adults with advanced dementia in Singapore experience at least one potentially burdensome intervention in their last year of life. The findings highlight an urgent need for new strategies to support families and reduce unnecessary interventions at the end of life.

Although the number of individuals living with dementia in the Asia-Pacific region is projected to rise to 71 million by 2050, current understanding of the last year of life with dementia is mostly informed by studies conducted in western contexts.

Published in the Journal of Gerontology: Medical Sciences, the study, examining individuals with dementia’s care experience in their last year of life in Singapore, found that 92% of older adults with advanced dementia experienced burdensome interventions such as feeding tubes or restraints—approaches that experts say may not improve comfort or survival.

From surveys, the researchers found that the below key issues affected the quality of end-of-life care experienced by older adults with dementia living at home:

A. Overreliance on burdensome medical interventions: Nearly all older adults experienced taxing interventions in their final year of life, including antibiotics (49%), IV fluids (22%), and feeding tubes, restraints or both (74%). The proportion of tube-fed older adults was significantly higher than in western contexts, and tube feeding often triggers the use of physical restraints to prevent tube removal. Clinical guidelines recommend careful hand feeding instead of tube feeding.

B. High hospitalization rate: Almost half (48%) of older adults were hospitalized for at least a night in their final year, and 35% died in hospital—proportions notably higher than in western studies where long-term care facilities such as nursing homes are the primary place of death. Such increased hospitalization can expose patients to taxing and costly care experiences with limited clinical benefit.

C. 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, and 30% quitting their jobs to do so. Caregivers provided an average of 42 hours of care per week—more than a full-time job—equivalent to an annual wage of S$32,125.

D. Insufficient caregiving support: A majority of caregivers (62%) reported receiving inadequate information when making care or treatment decisions, and only 15% were told how much longer their loved ones might live. The findings highlight critical gaps in caregiver communication and end-of-life preparedness.

The data was culled from a longitudinal cohort, titled Panel study Investigating Status of Cognitively impaired Elderly in Singapore (PISCES), in which the researchers surveyed family caregivers of individuals with advanced dementia every four months, between 2018 and 2023.

Caregivers also generally agreed (98%) that comfort was a primary care goal, however, close to a third (31%) of caregivers—mostly children of the older adults—considered prolonging life a priority.

Dr. Ellie Bostwick Andres, first author of the paper and a senior research fellow from the Lien Center for Palliative Care at Duke-NUS, said, “Our study highlights a mismatch between caregivers’ stated values and the reality of older adults’ experience in their last year of life. Frequent hospitalizations and the widespread use of interventions generally deemed ‘low-value’ among older adults living at home highlights the need to adopt a palliative approach at home to alleviate symptoms and minimize burden on older adults and their caregivers.”

Dr. Andres also said that as reliance on family caregivers increases in an aging society like Singapore, more needs to be done to support and equip family caregivers to provide compassionate care for their loved ones at home.

Senior author, Associate Professor Chetna Malhotra and Research Director at the Duke-NUS’ Lien Center for Palliative Care, added, “In Asia, cultural values shape approaches towards caring for end-of-life individuals with dementia living at home. For instance, children with strong filial values may be more inclined to try to help their parents live longer instead of opting for a palliative approach. This means that strategies to promote palliative care need to be driven by caregiver education and tailored to the region.”

Insights from the team’s study are now being used to curate tools that support caregivers—including CareBuddy, a mobile application that promotes healthy and graceful aging, and decision aids that help them make informed care decisions for their loved ones.

Professor Patrick Tan, Duke-NUS’ Dean-designate and Senior Vice-Dean for Research, said, “These findings reveal the human reality of dementia care in Asia—one defined by love, sacrifice, and difficult choices. As more older adults spend their final days at home, it’s critical that we build systems of care that show compassion not only to patients, but also to their caregivers who sustain them.”