The impact of two projects that provided help for people with dementia, and their carers, has been recognised by the Dementia Hero Awards.
Empowering Better End of life Dementia Care (EMBED-Care) COVID, a University College London-led project, won the research category of the awards.
Identifying and mitigating the individual and dyadic impact of COVID-19 and life under physical distancing on people with dementia and carers (INCLUDE) is a University of Exeter project. It was shortlisted in the same category.
Both were funded by the Economic and Social Research Council through UKRI’s rapid response call for COVID-19.
A dementia activist who cared for her mother nominated both projects.
Decision making for people with dementia
EMBED-Care COVID, led by Dr Nathan Davies and Dr Nuriye Kupeli, produced a decision aid for carers of someone with dementia.
The aid was designed to help carers and family members decide how they would approach critical decisions in the pandemic for the person with dementia.
The guide provided a pathway for decisions about:
- whether to keep the person at home or decide they would be better in hospital
- how to stay in touch with care home staff
- what support might be available at home.
Dr Nathan Davies said:
The decision aid has been used a lot by clinical teams and carers. NHS England included it in its COVID-19 dementia care pathway, and we know it has been used in hospitals as part of discharge planning.
We hope it has been useful for carers and professionals who want the best for their loved one or patient during a very difficult and stressful time full of unknowns.
Inspired by people with dementia
The INCLUDE project is led by Professor Linda Clare at the University of Exeter and is part of the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme.
IDEAL is a research project looking at living with dementia over time. Some of the participants have been involved in this research since 2014.
IDEAL’s advisory group, which includes people living with dementia, encouraged the team to research the effects of the lockdowns and create COVID-related resources.
The INCLUDE team connected remotely with people with dementia and their carers to hear and document their stories. This led to recommendations for
Co-investigator Professor Christina Victor said:
Our data set is powerful because it builds on that trajectory. On the level of engaging with our participants, I think perhaps it gave them hope and showed that we recognise they are important.
Living well alongside coronavirus
The research evidence from INCLUDE is the basis for the forthcoming Living Well Alongside Coronavirus (LILAC) toolkit. It will offer people with dementia and their carers dedicated resources to live well during the pandemic, and beyond.
The Dementia Hero Awards are run by the Alzheimer’s Society.
Last updated: 2 July 2021