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A relative visits a care home resident through a window during the coronavirus pandemic.

Living with and caring for people with dementia during COVID-19

Research to investigate the potential usefulness of a mobile phone app for people living with dementia (PWD) in the community was due to begin when the UK first went into lockdown in March 2020.

The study aimed to see whether the app could improve communication, safety and wellbeing for those with early stage dementia and their carers.

The Hear Me Now app

The app was developed by Maldaba, which is a software company specialising in web-based and mobile applications for the public and non-profit sectors. We partnered with Maldaba as their app, Hear Me Now, had potential for our user group and had been listed on the NHS app library, meaning that it has passed all the necessary NHS data protection measures. Maldaba want to learn and adapt their app for several user groups who could potentially benefit from its use. This project will help inform any future versions of Hear Me Now.

The research

The planned research involved working with Belong at Home, a care provider for PWD in the community. Meeting people living with dementia in the community, their carers and families face-to-face was a key part of the research.

Due to the COVID-19 pandemic, face-to-face research could not take place, so researchers used this time to carry out a specific piece of Patient and Public Involvement and Engagement (PPIE) work. The focus was on revealing the experiences of people living with dementia and their carers during the pandemic and to understand whether, and how, we could proceed with the research.

We also wanted to understand the wider issues around the role of technology and any challenges this could cause for people who may find themselves outside of mainstream society, with increased vulnerability, for health or social reasons. As a result of this work, researchers uncovered vital information which helped in planning how to begin the main research project.

The result of this PPIE work is a video, a report and written life stories that outline what it was like for people living with dementia in the community, along with their families and carers, when the first UK lockdown began in March 2020.  You can view these below, along with a blog post explaining more about the work.

Video: Living with dementia during COVID-19

In this video, introduced by Prof Caroline Sanders, carers and families affected by dementia talk to us about how COVID-19 affected them, and share their experiences of caring for someone with dementia in the community during the pandemic.

 

Report: Living with dementia during COVID-19

This report, by researchers Karen Davies, Bie Nio Ong and Caroline Sanders, outlines the main findings from this Patient and Public Involvement and Engagement work which explored the experiences of people living with dementia in the community during the pandemic.

Report: Living with dementia during COVID-19 (pdf)

Written life stories

Carers who were looking after people with dementia during COVID-19 shared their stories with us.

You can read two of their stories in the documents below.