UCL project EMBED-Care wins Dementia Hero Award
9 November 2021
A UCL-led research project designed to support carers of people with dementia, developed by Dr Nuriye Kupeli (UCL Psychiatry) and Dr Nathan Davies (UCL Epidemiology), has been awarded the Dementia Hero Award for Research, as part of the Alzheimer’s Society’s 2021 awards series.
The EMBED-Care project was developed to provide a decision aid for dementia carers to help them approach critical decisions.
The frequently changing and often unclear guidelines around Covid-19 left many unsure of how to proceed with their caring responsibilities, with charity Marie Curie warning that vague guidelines and lack of support could lead to people missing out on the care they require. The researchers showed that during the pandemic, if a person with dementia becomes unwell, they and their family and carers will often have to make rapid decisions that have lasting impacts on all involved.
Dr Nuriye Kupeli (UCL Psychiatry), co-founder of the EMBED-Care project, said:
“No families should be left to provide care unsupported. Guidance and advice should always be accessible for people caring and making decisions for a relative living with dementia.”
Dr Sam Royston, Director of Policy & Research at Marie Curie, added:
“The pandemic has been a test for palliative care and the current model is not sustainable for the ageing population. By 2040, 100,000 more people a year will die. There needs to be a clear plan.”
The team of researchers aimed to help alleviate the stresses and uncertainty around this process with the introduction of the decision aid guide. Working with current and former carers and experts of dementia, the team were able to produce a guide that effectively covers a number of difficult decisions that a carer may need to make for the person that they are caring for in the climate of Covid-19.
The resulting guide helps lead carers through difficult decisions, while ‘taking into consideration [the] wishes and preferences of the person living with dementia and the legal aspects of making decisions.’ There are also tips relating to Covid-19 symptoms to watch out for, where to find and access support, and how to ensure carers are looking after themselves as well as their charge.
The guide was led by UCL and funded by the Economic and Social Research Council through UKRI’s rapid response call for COVID-19.
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