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New study highlights need for investment in better dementia end-of-life care

Research from King’s College London found that people living with dementia experience high levels of unplanned hospital admissions towards the end of life. The study found that 40% of these hospital admissions, which are often distressing, took place in the last year of life.

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Dementia is the most common cause of death in the UK. By 2040, it is estimated that annually 220,000 people will die with dementia, with many experiencing symptoms like pain and agitation. Access to good care for people with dementia towards the end of life is currently highly unequal, and the experience of being admitted to a hospital can be upsetting for those living with the disease.

These new findings, published in Age & Ageing, are part of the Empowering Better End of Life Dementia Care Programme which looked at the data of 19,221 people diagnosed with dementia aged over 50, across a 22-year period (1995-2017) in four South London boroughs.

There were over 54,000 unplanned hospital admissions recorded, which steeply increased for people towards the end of life with over one in three admissions (37.3%) occurring in the last year of life, and many experiencing more than one admission. Although most people with dementia and their families prefer not spend time in the hospital towards the end of life, this study showed that people with dementia spent between 12-59 days in the hospital in the last year of life.

The study found that 38.1% died in the hospital, which is similar to data across the UK, and of these around one in ten died on their first unplanned hospital admission after diagnosis.

Hospital admissions can be detrimental to the person living with dementia and may be a consequence of poor community support. Understanding when unplanned hospital admissions are most likely to occur can help to inform where resources need to be invested to provide high-quality dementia care. Without adequate community focused dementia care services to manage the needs of people with dementia at the end of life, admission rates are likely to remain high.– Emel Yorganci, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation

 

In the UK, those who make decisions about care and develop policy do not yet have sufficient information to deliver solutions to improve the care that focuses on the person and their needs or to plan future services, for which there will be increasing demand. The findings from this research demonstrate the need for improved community care and services for people with dementia who are approaching the end of life, and high-quality dementia end-of-life care in hospitals.

In this story

Emel Yorganci

Emel Yorganci

ESRC PhD Training Fellow

Katherine Sleeman

Katherine Sleeman

Laing Galazka Chair in Palliative Care, Honorary Consultant in Palliative Medicine

Robert Stewart

Robert Stewart

Professor of Psychiatric Epidemiology & Clinical Informatics