Emel Yorganci is a researcher at the Cicely Saunders Institute, 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 Katherine Sleeman, Elizabeth Sampson, and Robert Stewart. It is 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).
This novel data linkage study has found that while critical care admissions for people with dementia are decreasing overall, the number of admissions of those living with dementia who are in the last year of their life is slightly increasing. The study included people with dementia identified from South London and Maudsley NHS Foundation Trust, which covers four South London boroughs (Southwark, Lambeth, Croydon and Lewisham). It did not compare these trends with critical care admissions data for people without dementia in their last year of life.
Critical care admissions can be lifesaving, but a significant proportion of patients admitted to critical care will die in hospital. The one-year survival of people with dementia following a critical care admission is 48%, which is similar to that observed in general older populations. Careful consideration of care needs, a multidisciplinary approach and communication with the patient and their family about preferences and end-of-life wishes are all vital for care planning during critical care admissions.
In the first study of its kind, the Empowering Better End of Life Care (EMBED-Care) team at King’s College London and University College London were able to track critical care admissions of people with dementia in South London by linking data from the South London and Maudsley’s Clinical Record Interactive Search (CRIS) with national hospital records.
As the number of people living and dying with dementia is increasing, understanding how we can provide high-quality, equitable care to people with dementia until the end of their lives must be a priority. Having access to data can give an insight into care experiences of people with dementia and help to shape and improve the quality of the care they receive. More extensive, nationwide data on the use and quality of dementia healthcare is an important next step to provide evidence that can inform service planning for people with dementia and improve their care.
While recognition of dementia by clinical teams has increased, skills and knowledge to deliver care for those who may be approaching the end of life are often lacking. Quality indicators such as the percentage of people with dementia who had a critical care admission in the last month and year of life, and the documentation of treatment and care preferences, may drive improvements in care quality for people with dementia until the end of their lives.
