By Wendy Mitchell, Author of Sunday Times Best Seller: Somebody I Used to Know

Published: 28 June 2019

This blog is an adaptation of Wendy’s keynote speech at Pioneering Partnerships 2019: Putting Patients First.

Getting involved in research was a no brainer

Imagine being given a diagnosis of young onset dementia. Your life falls apart, you feel worthless and of no use to anyone anymore. Services are non-existent in this area, so you feel and are in reality abandoned. That’s what happened to me in July 2014 at the age of 58 when I was diagnosed with young onset dementia.

Now imagine if someone came along and asked for your opinions, asked you to be involved in gathering information, someone who was genuinely interested in what you had to say, someone who was willing to travel to your home just to see you. Imagine how that would make you feel. Imagine the impact on your wellbeing – finally hearing someone acknowledging that you still had something to give; that you still had a valuable opinion and views that mattered. That’s what happened to me when I started to get involved in research.

As soon as I was diagnosed, I wanted to take part in research – after all there is no cure and a diagnosis of a progressive, debilitating, terminal illness focuses the mind on the here and now. Getting involved in research was a no brainer for me – if you’ll pardon the joke. There is no cure, so being involved helps improve my sense of wellbeing because I know I may be contributing to removing the inevitability that a diagnosis currently brings. Without research we can't change the future. For those of us living with dementia, we need hope and research gives us that hope!

It’s not for others to make the choice for me

Initially, I found it really difficult to find any sort of research to take part in. I had some very protective clinicians who seemed to think it was their right to deny me the opportunity to be involved. When I asked my consultant, his response was that he thought I had enough on my plate. But it’s not for others to make the choice for me – instead they should give me the information so that I can decide for myself. My family and friends thought it might be too much for me but getting involved was exactly what I needed: it made me feel valued as I was contributing to possible future developments – I could be helping my children or future generations. Plus researchers have so many safeguards in place that they would never put anyone at risk. If someone wishes to drop out at any point, they’re allowed to drop out.

When I was asked to help launch and promote the Join Dementia Research database, I jumped at the chance. As soon as Join Dementia Research notifications started to come through to my inbox it made it simpler to navigate the complex world of drugs trials and I took part in the MADE trial testing the drug Minocycline - the drug is currently available as an antibiotic for the treatment of acne and they thought it may reduce inflammation of the brain. My joke has always been that if it doesn’t work, at least I’ll be free from acne

We all know there is no cure and without willing volunteers to test new theories there will continue to be no cure. However, I know researches can find it very difficult to find people who will to take part. This may be due to overprotective clinicians or family and friends but may also simply be due to lack of understanding around the meaning of research and what it entails.

Language is so important when trying to engage people

I belong to a group in York called Minds and Voices, all people with dementia. When I asked them ‘who would like to be involved in research’? No one put their hand up. When I asked them, who would like to be involved in changing how dementia looks in the future – everyone put their hand up. When I asked them why they didn’t like the word ‘research’, they said because they didn’t want to be guinea pigs. They associated research with men in white coats handing out dodgy drugs. So, we’ve a long way to go to bust the myths surrounding research, but increasingly, through initiatives like Join Dementia Research, we’re able to dispel some of the myths and show how careful and complex processes drugs have to go through before being trialled.

Each month I give a talk about the importance of embracing research to all new NHS staff at the Humber Trust Induction day. The audience is made up of many specialties, from clinical to admin. I say to them: “You may be sat there thinking, well what’s research got to do with me, it’s not part of my job. But we have to normalise talking about research and to do this we must have every healthcare professional, no matter what their job, to come on board and promote research.”

Normalising talking about research will help normalise involvement.

Your expertise along with our expertise is a winning formula

I’ve been asked to read many documents written by researchers. It’s a wonderful way to be involved where both parties can benefit. Those researching dementia can have such a positive impact on people living with the condition and give them hope. We, as lay people, can tell you whether your papers are simple and straightforward to read and whether the language is correct. We can tell you what it looks like from a patient’s perspective before it goes out to the wider community. We can often save you many hours of unnecessary work by involving us from the start. You may think “Ah but this is my field of expertise, I know what I’m doing” but we are experts by experience and your expertise along with our expertise is a winning formula. Any positive effect you think you might have can be cancelled out with a glance at negative images and language in your reports, forms or posters advertising the research.

When I was interviewed for the MADE trial many years ago, they offended me with their first request: “Could you ask your carer to be present”. My thoughts were “No I won’t as I don’t have a carer, I live alone, but I do have a daughter who supports me.” Words really do matter and simple words can mean the difference between someone agreeing to take part and someone refusing. Patient collaboration can help reduce these risks.

Who better for researchers to work with from the very start, than people living with the condition? You’re missing out on a wealth of knowledge and expertise by not including and working alongside patients. Just because I have dementia doesn’t mean I’m not capable of advising researchers on project design; just because I have dementia, doesn’t mean I can’t be involved with committees – after all how do you know you’re getting it right if you don’t involve the very people you’re hoping to interview and include in your trials?

Involve us in promoting your research and encouraging others to take part. We all had talents before a diagnosis of dementia – we don’t suddenly lose all those talents overnight when we get a diagnosis.

No one should be used as a tick box exercise

When I say include and collaborate, I’m talking about a partnership – one of mutual respect. No token gestures, as that is ten times worse than not including us at all. I was contacted recently asking if my name could be added to a proposal as a member of a steering group. I asked questions about the research, what it would involve and how I would be compensated for my time. I had a quick email back saying: “Oh you won’t actually need to do anything; I simply need your name on the form as a patient.” I emailed back stating clearly the error of their ways and politely declined. No one should be used as a tick box exercise.

I’ve just spent two days in Birmingham with Dementia Enquirers – a group of people with dementia supported by Innovations in Dementia who have received funding from the National Lottery for people with dementia to lead on research, for researchers to walk through our doors instead of us walking through theirs.

Nothing is impossible, it just takes more thought, commitment and more organisation. I’m part of the Alzheimer’s Society Research Network and we asked to monitor, assess funding applications and are often part of something more detailed with the researchers.

There are many ways of showing gratitude for our involvement

Planning for public and patient involvement is a skill not to be underestimated. I must have all sorts of things in place for me to be willing and able to contribute. It’s up to you to be honest from the start, to negotiate something that suits both parties. Expenses ideally should be paid direct and if the patient has met their own expenses these need to be refunded within a few days.

Payment for time is something often whispered about in dark corners. For some ‘volunteering’ is what they want to do and if paid it becomes a minefield. That’s fine if it’s their choice. But there’s no reason why there can’t be a donation to a charity of their choice, a gift card or some other alternative. For some being paid isn’t a problem. I get paid in some format for the majority of committees or groups I sit on. There are many ways of showing gratitude for our involvement and the benefits to you far outweigh the effort it takes. The INVOLVE website has lots of information that may help.

Getting involved has given me back that sense of purpose

I’m someone all researchers seek out daily – a willing participant and a willing collaborator. I’ve been and am involved in many research projects: clinical, social and technological. I’ve been talking about involvement from the viewpoint of someone living with dementia, but it applies to any condition, any disease.

Why am I so willing? Because getting involved has given me back that sense of purpose that a diagnosis of dementia stripped away from me. Because being involved helps keep dementia at bay by stretching my capabilities and making my brain work doubly hard - I call it all my Sudoku. But more so because research gives me hope that my daughters will have a better future.