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Case study: Taking part in dementia research during a pandemic - Phil & Audrey's Story

How COVID-19 has affected the couple, including their contribution to dementia research

We often forget that for people living with dementia, they are not the only ones who are affected by the disease. It affects their family and the people around them.

Over the past few years, since Phil’s diagnosis, the couple from Tamworth have been enthusiastically taking part in various research studies, some of which involved face to face appointments but the majority of which have been online testing or questionnaires.  Unlike a lot of research, the latter have continued throughout the pandemic and Phil & Audrey have also signed up for studies into COVID-19’s  impact on their mental health.

Phil says: ‘It’s a shame that this virus has meant some people can’t continue with their research without increased risk, but if you can continue, then what is better than helping future generations?’

Audrey adds: ‘It’s so essential that people get involved and we will keep participating as long as it’s appropriate and safe for us to do it.

‘In some ways, the lockdown has given us the time to relax and reflect and do all the little jobs around the house, which has given us a sense of achievement - so it could be worse, though we do miss our holidays and hugging our friends.’

Phil adds: ‘COVID-19 has given everyone an opportunity to take part in research and we should apply the lessons learnt to future medical practice - that, to me is what research is all about. There's no better legacy to leave for the future generations,’

Watch a video of Phil & Audrey talking about their experiences here.

To find out more about taking part visit www.joindementiaresearch.nihr.ac.uk