Empowering Better End of Life Dementia Care
9th March 2022
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 distressing symptoms like pain and agitation. Access to good care for people with dementia towards the end of life is highly unequal. In the UK, those who make decisions about care and develop policy do not have sufficient information to deliver solutions to improve care that focuses on the person and their needs or to plan future services, for which there will be increasing demand.
Empowering Better End of Life Dementia Care (EMBED-Care) is a five-year collaboration between researchers at the Cicely Saunders Institute, King’s College London and University College London to improve palliative care for people living with dementia and their families by providing evidence to change how care is provided for people of any age with any type of dementia, to maximise their quality of life. The intervention will prioritise comfort and what is important to each person to ensure the right services are in the right place at the right time.
Tofunmi Aworinde, one of the research team said: “Funding from Cicely Saunders International has enabled this research into a novel and important area of dementia research. My research is developing and testing an intervention to enhance shared decision-making for people with dementia at home and their family carers to improve quality of life and care outcomes for people with dementia.”
As part of the research programme, researchers are also working with a digital company to develop and validate an app for use on e-tablets and smartphones. The app will be an electronic version of iPOS – a assessment tool used by healthcare professionals to assess symptoms problems or concerns, and identify and treat the cause using overarching principals of good palliative care for people living with dementia – such as managing delirium, eating and drinking difficulties, pain, skin care, sleep, spirituality issues, mobility, individual wellbeing and family carer wellbeing.
So far the research has found that there are many factors that influence whether eHealth is successfully adopted and used, particularly in care home settings where many people with dementia are cared for. There are 18 practical recommendations on how to increase the chances of eHealth being adopted and used successfully.
The full review is available to read: Gillam J, Davies N, Aworinde J, Yorganci E, Anderson J, Evans C. (2022) Implementation of eHealth to Support Assessment and Decision-making for Residents With Dementia in Long-term Care: Systematic Review. J Med Internet Res 2022;24(2):e29837. https://www.jmir.org/2022/2/e29837