In today’s Research Involvement blog, we are featuring Marion Ritchie, member of the National Dementia Carers Action Network (NDCAN) who has been involved in research for many years. Marion is just one of many people we have been speaking to their experiences of involvement in dementia research. This is the third blog in our new series, read the rest here, and stay tuned for more to come by following us on Twitter. 

I have been an NDCAN member for the past 3 years and until recently research has felt like something others do.  Our organisation, linked to Alzheimer Scotland, is involved in campaigning to improve the lives of unpaid carers and their loved ones who are living with dementia.   So when the opportunity to get involved in a research about Advanced Dementia, I was very interested although a newcomer to research.

Like others in NDCAN my experience of taking part in research has been focussed on dementia.   My husband and I joined BioTech over 20 years ago and were subjected to various physical and medical tests, recording our health at that time.  We were called back 10 years after the first session, to repeat the tests again, then heard nothing from the company until 3 weeks ago, when I was asked if I would take a Covid Immunity test.   They were researching how immunity is built up and how quickly, and as I had already received my first vaccination, I agreed to do the test at home and send in my results. The downside to this kind of research participation is that it is over a very long time, and despite taking part, I have no idea where the information is now, how it’s being used, or  even if was useful.  Perhaps I’m at fault for not contacting the company to ask for feedback, they certainly don’t hesitate when they want something from me. This was my first experience of research and I found the purely ‘data on demand’ stance somewhat demoralising.

Top tip: Feedback and saying thank you to research participants is not an optional extra, it shows respect and valuing. Don’t forget this!

When my husband was first diagnosed with Vascular Dementia he was in denial that there was no treatment available.  He saw TV adverts at the time for volunteers to take part in a drug trial at …… which was close to where we lived.  It involved him taking various health and mental tests to monitor any deterioration or changes in his dementia, but he also took medication without knowing if it was a new drug, or a placebo.  I was also committed to attending with him and completing forms and online assessments regarding my perception of his condition and recording any changes I became aware of.   At the beginning, he was very enthusiastic, and I was willing to cooperate for his sake, but after 2 years funding was withdrawn and the project stopped.  Again, we were never told whether he took a trial drug or placebo, and the experience made my husband more stressed because he was aware during the practical assessments of his continuing decline. How did this second experience of research and radio silence make me feel?  It was 2 years in our lives which I feel were wasted and we can’t ever get back.  I also have no idea if the research was valuable, published or just wasted. You might be thinking, well if research made you feel like this, why did you keep saying ‘yes’. The simple reason is that when I joined NDCAN, I did so prepared to help others through sharing my lived experience. I do this through talks, reflecting nine years of life affected by Vascular Dementia, but I also want to make a difference in other ways not least through contributing to research.

Top tip for researchers: This is not the type of research impact we want to see or report in our REF submissions!

My latest venture into research was during lockdown in 2020.  I was approached by a UWS professor to contribute to a case study research project – “Care, Poverty and COVID-19: Personal Stories”.  The purpose was to highlight how Covid had affected carers whether professional, paid or unpaid.  This was a short term, 3 month, partnership between UWS and Oxfam Scotland, looking at the personal stories of a wide variety of carers, in a variety of caring situations. This interested me because I could see a deadline for the finished report, and for the first time I was not writing about dementia, but my experiences during lockdown and caring for my older sister with her various health conditions.  The project was well presented and fully explained, and the finished report was to be published and widely available for various bodies including Scottish Government. 

I’m delighted to say that I was contacted in December 2020 by email, giving me the link to the published report, which was also sent to MSPs.  As a follow on from my contribution I was asked to write an article for the Scotsman newspaper, on the impact on my life as an unpaid carer looking after my husband with dementia.  This was published on Carers Rights Day – 26^th November 2020.

Top tip: Affirming participant experiences are possible in all studies. But these don’t happen by chance, they require thoughtful research design and sensitive project management.

So this leads me onto why I am now involved in Advanced Dementia research – this time in collaboration with UWS, SDRC and Alzheimer Scotland, and NDCAN members.  For the first time, I’m part of a research team.  I’m learning about different types of research; how funding is gained; how information is collected; collaboration, ethics and PhD studentships – all new terminology to me and my fellow NDCAN volunteers.  But we are learning how to be co-researchers, not just the researched, and importantly for me, I won’t be wondering what happened next I will be part of the final report.

Thank you so much Marion for your contribution. If you are an SDRC member and would like to write for this series, please get in touch.