New research from King’s College London found that people living with dementia experience higher levels of unplanned hospitals admissions towards the end of life after receiving 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 Research (NIHR) and Economic and Social Research Council (ESRC) and supported by Marie Curie .
It was carried out in four South London Boroughs  and analysed data on 19,221 people aged 50 and over, diagnosed with dementia, across a 22-year period (1995-2017).The researchers linked anonymised data on patients who had received a dementia diagnosis to hospital admission data and mortality data.
The findings 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.
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, in this study people with dementia spent between 12-59 days in the hospital in the last year of life.
In the sample, 38.1% died in the hospital, which is similar to national data, and of these around one in 10 (9.1%) died on their first unplanned hospital admission after diagnosis.
Emel Yorganci from the Faculty of Nursing, Midwifery & Palliative Care at King’s College London, and lead author on the paper, said:
“This research shows that during the end-of-life period, people with dementia experience a much higher number of unplanned hospital admissions.
These admissions, while sometimes necessary, 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 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.”
Retired nurse, Deborah Paget, experienced first-hand the impact of unplanned hospital admissions for people with dementia, after her mum suffered a fall in December 2018. Deborah’s mum was first diagnosed in 2007. She said:
“In December 2018, my mother suffered a bad fall and we had to call for an ambulance. I went in the ambulance with her, and without me there, she would have been exceptionally distressed. She didn’t know where she was, and you could see she felt completely lost.
I think she felt frantic, she couldn’t retain what I said or what to do with the information. Once at the hospital, she did calm down gradually, but she wasn’t sure what was going on, who the people were or why she was there.
She had no memory of her fall. Whilst in the hospital no one came to check on us for about three hours, and if I wasn’t there as a familiar face and a retired nurse, I can’t imagine how disorientated she would have been.”
Debbie Ripley, Associate Director Strategic Partnerships and Services London at Marie Curie said:
“For people living with dementia, being taken out of their home and rushed into hospital can be extremely distressing and upsetting.
It can make the person feel vulnerable and scared, leaving themselves and their loved ones traumatised.
We know that proper community palliative care, with the correct services in place, can reduced emergency admissions for people with dementia, and therefore can be the difference between a good end of life experience and a bad one.
There continues to be a need for these to be improved, especially for those living with dementia.”
The paper was authored by Emel Yorganci1, Robert Stewart2,3, Elizabeth L Sampson4,5, Katherine E Sleeman1.
1Cicely Saunders Institute, King’s College London, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, London, UK 2Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK3South London and Maudsley NHS Foundation Trust, London, UK4Department of Psychological Medicine, Royal London Hospital, East London NHS Foundation Trust5Division of Psychiatry, University College London, London, UK
 Empowering Better End of Life Dementia Care (EMBED-Care Programme) aims to develop new ways to improve end of life care for people dying with or from dementia and their carer. It is a five-year programme of work funded by the UK Economic and Social Research Council and the National Institute of Health Research. It is being run between the Marie Curie Palliative Care Research Department at UCL and the Cicely Saunders Institute at KCL.
 The research was co-authored by Dr Elizabeth Sampson who was supported by Marie Curie core grant MCCC-FCO-16-U while this work was conducted.
 The study was carried out on residents from across Croydon, Lambeth, Lewisham and Southwark.
About Marie Curie
Marie Curie is the UK’s leading end of life charity. The charity provides essential nursing and hospice care for people with any terminal illness, a free support line and a wealth of information and support on all aspects of dying, death and bereavement. It is the largest charity funder of palliative and end of life care research in the UK. Marie Curie is committed to sharing its expertise to improve quality of care and ensuring that everyone has a good end of life experience. Marie Curie is calling for recognition and sustainable funding of end of life care and bereavement support.
Please note we are ‘Marie Curie’ (not ‘Marie Curie Cancer Care’)
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This project is funded by the National Institute for Health Research (NIHR) and Economic and Social Research Council (ESRC) ESRC/NIHR dementia initiative 2018 (Grant Reference Number ES/S010327/1). KES is the Laing Galazka Chair in palliative care at King’s College London, funded by an endowment from Cicely Saunders International and the Kirby Laing foundation. RS is part-funded by i) the National Institute for Health Research (NIHR) Biomedical Research Centre at the South London and Maudsley NHS Foundation Trust and King’s College London; ii) the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust; iii) the DATAMIND HDR UK Mental Health Data Hub (MRC grant MR/W014386). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
This was an observational, retrospective study. Data on dementia diagnosis used in this study was from the Clinical Record Interactive Search (CRIS) system which is a computer system that allows researchers to carry out research using information from South London and Maudsley NHS Foundation Trust clinical records. CRIS is safe and secure, and patients’ personal details cannot be accessed by researchers who use it.