Our Research Network volunteers supporting dementia researchers - virtually

Deb and Karin, both members of our Research Network and former carers, have been working with researchers at Newcastle University. The research team are looking at how best to support people with dementia to keep active in their everyday lives.

It’s important for everyone to keep active, and this applies to people with dementia just as much. This can be a challenge and for every individual, what they enjoy and feel comfortable doing is different. 

Barriers and motivators 

Riona McArdle, a researcher based at Newcastle University, is exploring what the barriers and motivators to everyday activity are for people with dementia.

Understanding what prevents or encourages people with dementia to take part in activities is the first step to finding ways to support them to do so.

A key part of this research was to consult the real experts in dementia – those living with the condition as well as carers and former carers. 

Riona hosted a webinar with our Research Network volunteers to gather their views on the barriers and motivators to everyday activities for people with dementia, and why they feel everyday activity is so important.

Deb’s story: A privilege to take part 

Deb said: 'I appreciated the opportunity to be involved in the focus group with the researcher Riona McArdle. In an hour we had a good and rich discussion and covered a lot.

It was a privilege to be a part of and hear other peoples’ experiences and find commonality in them.

'It was lovely to have the opportunity to be involved. Lockdown also provided me with the chance to be involved in several other opportunities to support dementia research.

'I took part in the interviews and a Zoom focus group with Nesta who are launching a challenge prize around technology. This was an invigorating discussion and was well run and I really enjoyed it.'

Volunteering virtually

'I have also been volunteering for the Alzheimer’s Society making companion calls to people with dementia and to carers to check they are coping during the COVID-19 pandemic, and to provide a listening ear. 

'This is a well-run scheme and I have been given great support by my role manager and completed online training to before I started. I may not have had time to take part in some of these activities in the business of life before lockdown and show the many ways my phone has kept me active and connected.'

Karin’s story: Getting involved virtually

Karin said: 'During these times of lockdown, I realised that we are still able to participate in ongoing research by using platforms, such as Zoom. Until lockdown, I had never heard of it. 

'Anyone who knows me would be surprised that I am now adept at Zoom, as I am not known for my technological abilities! I was also a little unsure whether it would be easy to use, or if I was able to download it from my laptop.

'I would like to say to anyone who is a bit wary, just go ahead! It is easy to take part and you get to connect with other Research Network volunteers and the researchers, and share your views.

'I enjoyed the session with Riona so much that I have since signed up to other research studies.

I would encourage anyone to become a Research Network volunteer as it gives you the chance to participate in research that interests.

'You get to meet other volunteers both online and, once COVID-19 has lessened, in person at conferences and other events, knowing that you are playing a part in helping with upcoming research.'

Stories from the Research Network

Read more stories from our wonderful Research Network volunteers. 

Read more


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