Empowering better end-of-life care for people with dementia

Emel Yorganci is a researcher in the Faculty of Nursing, Midwifery & Palliative Care at King’s College London. She tweets at @emelasml. This research, published in Age and Ageing, was co-authored with Robert Stewart, Elizabeth Sampson and Katherine Sleeman.

New research from King’s College London found that people living with dementia experience higher levels of unplanned hospital admissions towards the end-of-life compared with the period immediately following their dementia diagnosis. The study found that 40% of all unplanned hospital admissions after a diagnosis of dementia took place in the last year of life.

The research, published in Age & Ageing, was part of the Empowering Better End of Life Dementia Care (EMBED-care)  programme, which is funded by the National Institute for Health and Care Research (NIHR) and Economic and Social Research Council (ESRC) and supported by Marie Curie. The findings demonstrate the need for improved community care and services for people with dementia who are approaching the end-of-life, increased public awareness of dementia as a life-limiting illness, and high-quality dementia end-of-life care in hospitals.

There were over 54,000 unplanned hospital admissions recorded across the study period, with the frequency of admissions steeply increasing for people towards the end-of-life. Over one in three admissions (37.3%) occurred in the last year of life, and many people experienced more than one admission. Although most people with dementia and their families prefer not to spend time in the hospital towards the end of life, in this study people with dementia spent between 12 and 59 days in the hospital in the last year of life.  

Of the participants who died during the study period, 38.1% died in the hospital, which is similar to national data. Of these, around one in 10 (9.1%) died on their first unplanned hospital admission after diagnosis.

This research shows that during the end-of-life period people with dementia experience a much higher number of unplanned hospital admissions than in the years following their initial diagnosis. These admissions, while sometimes necessary, can be detrimental to the person living with dementia and to those important to them, and may be a consequence of poor community support or of difficulties recognising when a person living with dementia may be entering the last phase of their life. 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 high-quality, 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.

The full research paper 'Patterns of unplanned hospital admissions among people with dementia: From diagnosis to the end of life' can be read on the Age and Ageing journal website.