End-of-life care in dementia: Are we doing enough?
An article written by Dr Janani Thillainadesan and Professor David Le Couteur
A recent study from Concord Hospital in Sydney has raised an important question: Is hospital-based end-of-life care for people with dementia truly good enough? By studying patients who died during their hospitalisation, the research offers insights into the current state of care and the gaps that remain.
Dementia is not a sudden or straightforward illness. Unlike cancer or heart failure, its end-of-life course can be long and unpredictable, and marked by loss of memory, function, and independence. Older adults with dementia often have other medical conditions that also affects their health. Many patients cannot communicate their needs due to advanced cognitive decline, making it difficult for clinicians and families to know if care meets their wishes. This places a heavy responsibility on healthcare teams to ensure that dignity, comfort, and compassion remain at the forefront.
Complications like pneumonia, dehydration, or difficulty swallowing (dysphagia) are common as dementia advances. Recurrent hospitalisations can become part of the final years, with each admission raising questions about whether interventions are truly helping or prolonging discomfort.
Our recent research looked at 100 patients with dementia who died during their hospital stay in 2019. [1] The average age of the study population was 87 years, and nearly two-thirds had been living in nursing homes.
A majority (63%) were cared for by the geriatric medicine team, while only 11% were admitted under palliative care. The others received care from other specialties such as cardiology or nephrology. This reflects a reality seen in many hospitals. Patients with dementia are more often managed by acute medical or geriatric medicine teams than by palliative care specialists.
When examining causes of death, pneumonia was the leading cause in dementia patients cared for by geriatricians, while cancer was the most common cause in those looked after by palliative care. Cardiovascular disease was more common in other specialties. Dysphagia, a major risk factor for infections like pneumonia, was present in almost half of the patients.
The study used clear benchmarks of good end-of-life practice, including documentation of advance care planning, resuscitation orders, symptom management in the last 48 hours, and deprescribing unnecessary medications.
Encouragingly, in many areas, hospitals were performing well. Nearly every patient (98%) had discussions and documentation around resuscitation wishes.
Emergency calls in the final 48 hours of life were avoided in 93% of cases, minimising unnecessary distress.
Yet one critical gap stood out: only one-third of patients had documented discussions about their ability to eat and drink.
We found that there were no big differences between geriatric medicine and palliative care teams in how often key comfort‑focused steps were carried out. Even when patients with dementia were admitted suddenly through the hospital system (e.g. with a severe infection), geriatricians still managed to put these processes in place, providing care that looked very similar to what palliative care teams provide.
This highlights the central role geriatric medicine plays in guiding dementia care at the end of life, not just the earlier stages such as at diagnosis. With most patients arriving from nursing homes and presenting with infections, geriatricians are at the frontline of ensuring dignity and symptom control during the final days.
This study shows that while many processes of good end-of-life care are being followed, key gaps remain. In particular, conversations about nutrition, hydration, and swallowing difficulties must become routine. Equally important is breaking the mindset that palliative care is only for cancer patients. People living with advanced dementia deserve the same access to specialised comfort-focused care.
Ultimately, the question is not whether end-of-life care is good enough but whether we are willing to make it better. Families, clinicians, and policymakers must continue to push for systems that place dignity, choice, and comfort at the heart of care for people with dementia.
References:
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Ong XW, Le Couteur DG, Waite LM, Thillainadesan J. End-of-life care in hospitalized patients with dementia. J Gerontol A Biol Sci Med Sci. 2025;80(8).
Authors
Dr Janani Thillainadesan
Staff Specialist Geriatrician, Concord Hospital and Centre for Education and Research on Ageing
Conjoint Senior Lecturer, Concord Clinical School, University of Sydney
Professor David Le Couteur
Professor of Geriatric Medicine, University of Sydney
Senior Staff Specialist Physician in Geriatric Medicine, Concord RG Hospital, Sydney