What Research Means to Us: NRS Neuroprogressive and Dementia Network

Abstract

This chapter is a collaboration with several additional authors, reflecting on their time working in the field of dementia research, taking on co-produced projects, and exploring dementia activism. We look at the different types of research and what participating might look like, as well as consider what we want to see in the future.

Co-authors: Rosalie Ashworth, Sue Fyvel, Alyson Hill, Chris Maddocks, Masood Qureshi, David Ross, Stuart Hay, Martin Robertson, Willy Gilder, Winnie Henry, Myra Lamont, Agnes Houston, and Fred S. Wilson

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Neuroprogressive and Dementia Network, NHS Tayside, Dundee, UK

Tom Russ, Emma Law, Jacqui Kerr, Tiffany Stewart, Bernie McInally, Julie Scott, Neil Wright, and Alison McBain

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Neuroprogressive and Dementia Network, Dundee, UK

Lesley Cousland

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ENRICH Scotland, NHS Tayside, Dundee, UK

Charlie Binnie

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Neuroprogressive and Dementia Network, NHS Tayside, Dundee, UK

Keith Oliver

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University of Edinburgh, Edinburgh, UK

The final part of our book brings us back to how the book proposal started as a collaboration between Partners in Research within the Neuroprogressive and Dementia Network. The chapter aims to inform people living with dementia and their loved ones about what research is and the different opportunities that may be available. We also hope that in covering a range of research, and research engagement, those working with people affected by dementia will feel more confident in having discussions about research.

The Neuroprogressive and Dementia Network (NDN), previously known as the Scottish Dementia Clinical Research Network (SDCRN), is funded by the Chief Scientist Office and aims to improve research recruitment into high-quality studies. The NDN matches people to studies that they can take part in. In doing so, it reduces the burden on prospective participants so that they are only approached for opportunities that might be relevant and of interest to them.

Getting to Know the Neuroprogressive and Dementia Network

Partners in Research have continually shown the importance of getting to know the person behind the ‘dementia label’. We hope that by getting to know the person behind the ‘researcher label’, we can make the world of research less daunting to potential participants. NDN staff were asked,

• 1. What got you into researching dementia and neuroprogressive disease?

• 2. Could you share your experiences of dementia research over the past 10–15 years?

• 3. Why is research important?

• 4. What do you wish people knew about research?

What Got You into Researching Dementia and Neuroprogressive Conditions?

My venture into health research wasn’t planned, but as a clinician with a special interest in the field of dementia, my involvement improved my practice considerably. It encouraged me to not just accept common practice, to question every clinical decision, and seek out the supporting evidence, which resulted in me being able to justify my own practice at every turn. It also encouraged me to complete a Masters in Health Research. My ownership of this gave further weight to my clinical decision making, particularly if slightly outwith the accepted norm. (Bernie McInall, Clinical Studies Officer NDN/ENRICH Scotland)

My high school report once said, ‘Tiffany asks too many questions’, something which makes perfect sense to me now! I have always been inquisitive, particularly regarding human behaviour and the inner workings of the mind. I enjoyed studying psychology and imagined myself in a role where I could be helping people and making a difference to their lives. You could say that I fell into my first research post. I saw an advert in the local paper (back when that was the done thing!) for a research assistant post with Dundee University, this was my foot in the door! I thoroughly enjoyed the world of clinical research, but I quickly learned that I was more interested in diseases affecting the brain. This led me to pursue a further post at Edinburgh University, where I completed my first MSc and gained the valuable skills and expertise to lead me to apply for a post within NHS Tayside in the NDN. (Tiffany, Clinical Studies Officer)

I have been a nurse for many years and supported people living with dementia in a range of settings. Nursing practice is underpinned by research, and I value how research can influence positive change and well-being in people’s lives, offering hope to those with life-limiting conditions. Since retiring from my NHS post, I am now privileged to work with ENRICH (Enabling Research in Care Homes) Scotland. We support and develop research in care homes, an environment that is often excluded from research. I believe that people living/working/supporting people in care homes should be able to get involved in research. That could be taking part in a research study and/or getting involved at the outset of designing a research project (co-production). Getting people involved from the outset I believe can ensure research is focussed on what is important and valuable to people for now and for the future. (Lesley Cousland, ENRICH Scotland Clinical Studies Officer)

I have been in this field for just over a year but got interested in neuroprogressive disease and research much earlier than that when—like most of us—someone I cared for fell ill with a neuroprogressive disease. (Neil Wright, Past Employee of NDN)

I started my professional life as a nurse more than 35 years ago and worked in many areas of psychiatry until I became the senior charge nurse in an acute admissions ward for people with dementia; from then, I knew my path was set. I established a unique day hospital called the Fast Track Day Hospital for people with dementia, and for my efforts, I was awarded the Nursing Standard Nursing Older People Nurse of the year. From there, I did some clinical research with the two consultant psychiatrists that I worked with, and we established a dementia research group for NHS Tayside. I was the study coordinator on an early treatment for dementia (the study did not show any positive results), but this gave me a taste of clinical research. I went on to do my Master’s in Public Health and chose to study what difference would be made to people with dementia in introducing a specialist dementia nurse into the acute hospital setting (the local Royal Infirmary). I’m pleased to say it did make a huge difference and this service is now a mainstream service. Following this, I spent six years doing a doctorate in applied social research, studying whether research in care homes fostered a sense of inclusion, citizenship, and involvement for residents, including those with dementia. I completed my doctorate while working full time as the NDN network manager. I’m very pleased that I passed! My research interest remains focussed on dementia as this is the area I know best and have a clinical and managerial background in this field. (Emma, NDN Manager)

Could You Share Your Experiences of Dementia Research Over the Past 10–15 Years?

Before my work with the NDN, I did not have a lot of experience with dementia research outside of some awareness of national campaigns by big charities like Alzheimer’s Scotland. I have come to appreciate the incredible amount of hard work and dedication that goes into dementia research all over the country. (Neil, National Administrator)

Over the past 10–15 years, the field of dementia research has experienced peaks and troughs in potential treatments that ease the burden of dementia for the person experiencing the disease and their loved ones. Since I started working in dementia research 16 years ago, I have seen hope and excitement when new studies for dementia are beginning their journey. Unfortunately, on too many occasions I have seen the disappointment when the research analysis does not indicate a positive outcome. This disappointment not only impacts the researchers but also impacts the participants and their families. How do we keep the dementia research momentum going … by continuing to be the NDN and share our passion for dementia research for the benefit of all. (Jacqui Kerr, NDN)

My experience with dementia research over the last four years is sporadic due to COVID-19. I have worked on several trials, including EPAD [1] where I was a ‘rater’. I worked on all aspects of the trial, booking appointments, organising room availability, MRI scans, and lumbar punctures. I obtained and processed specimens in the labs. Like most dementia studies, the trial visits are lengthy, and as part of the team, we would try to make the visit run as smoothly as possible. We would build up a rapport with the participant. Getting to know what the best time of day was for them, what their day-to-day life was like so that we could work around their valuable time also. We also set up a local participant panel for EPAD that ran across the network. From this, participants would organise meetings, attend conferences, etc. (Julie Scott, NDN)

When I first started nursing in dementia, the only available treatments were just finishing clinical trials and were the now well-known cholinesterase inhibitors of donepezil (Aricept), rivastigmine (Exelon), and galantamine (Reminyl). Then there were trials for Memantine (Ebixa), and this has since been licenced too. Since these drugs were licenced, there has been very slow progress in drug treatment breakthroughs, although initial studies involving aducanumab and, more recently, lecanemab have shown some promising results. Dementia research is not all about drug treatments, and there are many research opportunities around social care, health, and well-being. The best way to keep up to date with what is going on is to sign up to the neuroprogressive and dementia networks ‘Permission to contact’. See our strategy for more information about how to sign up (available here). We continue our efforts to ensure that Scotland is involved in all kinds of studies involving people with dementia. (Emma, NDN Manager).

I started my first research project almost 15 years ago, and I think one of the main things that has changed—for the better—is a recognition of what people with dementia can contribute to research. Many years ago, people in a study were called ‘subjects’, which later changed to ‘participants’. However, many people are now contributing to research as co-researchers which is very exciting. Of course, there are important issues about how to support people to do this, but the fact that it is becoming accepted and more mainstream is very exciting. (Tom Russ, NDN Network Champion)

Why Is Research Important?

I think that all medical research is important—it is how we make healthcare better for everyone—but since I started finding out more about the neuroprogressive research field, I have been truly impressed at the number of people who are looking into improving quality of life as well as diagnostic and symptom-based research. We all know the cure for dementia and other neurological conditions is not going to be coming soon, but if we can make people more comfortable and able to engage with the life still around them, I think we will have done well. (Neil, National Administrator)

There are many reasons why research is important. Research is how we will develop new treatments or approaches to care, understand more about the experience of having dementia, or understand more about the illnesses that result in dementia. Taking part in research can be interesting and rewarding—as a ‘professional’ researcher or as a person living with dementia. It can bring hope that one day we may have an effective treatment. (Tom, Network Champion)

Without research, much of the population worldwide would not be receiving the level of care and treatment needed for their health and well-being. Each form of care we receive began somewhere, from the simplest to the more invasive of treatments, they all began with research and asking the questions—‘How does it work?’, ‘Why does it work?’, and ‘Will it provide the best outcome?’ Research in any form provides us with the knowledge that evidenced-based practice has been used to ensure that we are receiving the best care and treatment available. (Jacqui, Clinical Studies Officer)

Research is essential for the prevention and management of disease. Enhancing people’s lives through the disease process and hopefully eliminating or reducing the impact of dementia. It also gives hope to the individual, their families, and for the future. (Julie, Clinical Studies Officer)

What Do You Wish People Knew about Research?

I wish people would not be afraid of saying ‘Yes’. There are different levels of inclusion in research. If you are a participant in a drug trial you do have to give some chunks of your time, but the return for that is that you become part of something exciting, you are never out of pocket, and you are a part of the research team building relationships with the staff over time. You truly matter to the staff, and they will bend over backwards to accommodate your requests and ensure your comfort and safety while you are in the trial. You can also choose to be less involved but still contribute your valuable time to completing questionnaires, being part of one-off focus groups, or even becoming a ‘partner in research’. You may choose to not participate in any studies that you are offered, but if you do not say yes to hearing the opportunities, you will never know what is available to you. There are many options with differing levels of involvement. Say ‘Yes! (Emma, Network Manager)

As a researcher, I wish that more people understood what research is and how everyone should have access to it, and if not then question why not I also wish that people understood the great importance of research, without research we would not have many of the things we take for granted in life, such as medications/vaccines, healthcare services, or any of the various routine tests and investigations that we as members of the public have throughout our lives. Researchers are also patients and relatives too, and we want to find the best possible practices because it affects all of us in some way or another! (Tiffany, Clinical Studies Officer)

Approaches to Clinical Trials in Dementia

There are thousands of different proteins in the human body that have different functions. Medical researchers exploring Alzheimer’s disease tend to focus on two proteins: beta-amyloid and tau. Research suggests that these two proteins are fundamental in the brain changes you see for people living with Alzheimer’s disease. Beta-amyloid essentially clumps together to form plaques, which damage cells. Abnormal tau protein prevents messages from being sent as they become entangled. The damage caused by these two proteins in stopping information from getting through or preventing new connections being formed can lead to symptoms such as memory loss, difficulty planning, and change in language.

Although a very simplified example, one of the suggested reasons for the lack of success in Alzheimer’s disease clinical trials is that the medication is introduced too late in the disease process, that is, tangles and plaques have already formed. As a result, research is moving towards involving people earlier and earlier to try and prevent changes taking place, whether that is recruiting people with mild cognitive impairment or identifying people with biomarkers [2] (e.g., blood work that flags up the potential risk of developing a condition).

There is no cure. We know that. The most important thing we can do is prevention efforts. If we can find what is causing it and stop it, then we don’t need the cure we just need the prevention. (David)

Another approach being taken is to look at repurposing existing medications. A repurposed medication is one that has been approved for use in a different context and testing for its use in dementia. Taking this approach can be quicker than completely new medicines because the safety of the drug has already been established. For example, looking at whether a drug licenced to treat blood pressure could also reduce cognitive decline or dementia symptoms.

Lessons from COVID-19 Clinical Trials

In December 2020, the UK government reported that over 600,000 people have taken part in public health research into the effects of and treatment for COVID-19.² The COVID-19 pandemic has had an overwhelming impact across the world. Participation in clinical trials resulted in over 50 million people across the UK receiving at least one dose of a COVID-19 vaccine.

Research is all splintered instead of coming together as we had an example of with the COVID-19 research being done—suddenly everyone was reading from the same page and things got done very quickly, we need more of that. (Winnie)

The spotlight on clinical research and its potential to develop cures and treatments for health conditions could have important benefits to dementia research. Although the speed of vaccine development in COVID-19 is unique, a typical clinical trial can take 12–15 years from study design to the availability of a new licenced medication. The timely process is explained through trial ‘phases’ as shown in Fig. 5.1.

Fig. 5.1

Types of clinical trials

Within the clinical research sphere, trials are often referred to by ‘Phase’ from 0 to 4. The phases essentially represent increasing sample size, with tailoring of study medication based on feedback from the early trial phases. A successful clinical trial for new medication will involve completing phases 1–3. When it finishes phase 3, it is recognised as a working treatment, with phase 4 studies looking at the longer-term effectiveness.

Hear from Research Participants from the Neuroprogressive and Dementia Network

Many of our Partners in Research have been involved in research in a co-researcher capacity as opposed to research participants. However, this should not take away from the importance of research participation, as research participants are fundamental to advancing knowledge. As shown in the COVID-19 pandemic, willing participants led to a vaccine. The nature of randomised control trials means that individuals with lived experience are not identifiable but considered part of an experimental group. This can mean we do not get the chance to capture their experiences of being involved in the same way we can with co-production.

To capture some of these missing voices, NDN staff asked research participants with whom they worked closely if they wanted to share some of their experiences.

We joined the trial to help research into this cruel disease. The drug might help to slow down Alzheimer’s, but we are aware he could be on a placebo. The trial environment is very welcoming with very friendly smiley staff. They are happy to explain any concerns we have and will listen to the carer as well as the person living with dementia. It’s very comforting we have this support, and they check the person with dementia’s health every visit, which is very reassuring. I would recommend anybody thinking about going on a trial not to hesitate. I hope this is helpful to know. The team has all been fantastic. (Research Participant A)

The motivation was that it was such a shock to my wife and I to get the diagnosis, and my local health centre offered no support. They had referred me to the hospital where the staff were extremely kind and helpful and gave me the assurance that I was not alone in coping with the diagnosis. Joining the research study has been trying and exhausting, so many questions, and for me it was a shock to realise just how much my brain had deteriorated, in what appears to have been a short time since retiring from work. I had worked for 30 plus years in Oil & Gas Sector as a Senior Consultant Engineer in an extremely demanding and responsible position. It has been reassuring to get checked every month for weight gain/loss, blood pressure, blood, which again have not been reviewed by my health centre. I would recommend that to be given the opportunity to participate in anything that extends an inevitable outcome of Alzheimer’s is worth taking?! Thank you to the research project team for the opportunity. (Research Participant B)

I thought at first it is too early for us to make any meaningful comment about research involvement. But we are thankful to be on the trial which gives support, information, and a purpose, with everyone involved being very attentive, professional, and caring. It is difficult to be hopeful and make the most of now when you know what’s ahead. It is very important to [person with dementia] that he is doing his bit. We are also hopeful that medication for depression will help him accept what he can do now. (Research Participant C)

I got involved in the research as a patient because I thought there was something wrong with my memory, and the tests they did confirmed this. It made a lot of sense and has motivated some minor life changes that have helped me adapt. (Research Participant D)

Charlie Binnie has been involved in several research studies and has chosen to share his experiences of being a participant.

What got me involved in research first was that I had got diagnosed very early. I was at the doctor three times, with a year in between, and each time they said that there was nothing wrong with me. However, I still thought I was losing my memory. Each time it had been a different doctor. On the third time, it was the ‘head doctor’, and when I went into him, he said, ‘Yes, I’ve seen in your notes you’ve been here twice before and that you’re okay’, but I said, ‘well yes, but I honestly think there’s something wrong with my memory’. He said, ‘Well you’ve come to the right chap because it’s in my field, I’ll get you an extra-long exam to go through’. So, he did that and that’s when he came back and said that ‘yes, you’ve got a very early stage’. A couple of years prior to me going, my wife and I went forward for experimental MRIs at the hospital, not that I thought I had the disease at the time. It meant they could go back into my records, and they found a scan of my head from that time, and there was nothing there. However, this time, there was a slight shadow on it. That’s why they were saying I have it at the very early stage. They had scans to compare it to. Therefore, I said, well I’ve caught it at an early stage, do you think I could be a guinea pig? My cousin, who had a different disease, he was a guinea pig and he was doing that for a long time, whether it was because of that he lived longer, I’ve no idea. But it made me think maybe I would try it.

There were many people who came out to see me in the first couple of months. I thought I must be bad because I could remember their names but not their faces. It wasn’t the case; it was just the number of different people coming out at different dates and trying to get it all in my diary that made it harder. In the very early stages, I used a whiteboard. I still have that, and I put down names that I’m likely to forget. It has come in handy one way or the other. I also use the diary a lot more than I ever did. My wife does more to help now too, she has a diary and keeps notes of where we are meant to be at certain times. All the things we do are important and must fit in. It gets overpowering and gets to you a wee bit when things start to clash. I know it is important to keep the cogs going as it were, so I’ve been to things like the Alzheimer’s World Conference in London. I’ve taken up sudoku, and I play a lot of sports, including curling, golf, and hill walking.

So, I got through all of that, and I’ve been under their wing ever since. Except for lockdown and things like that where we couldn’t get in. I was on a different drug at one time, but the last one I’ve been on longer. They had stopped it because they thought it wasn’t doing any good in Britain, but then they discovered that the experiment worldwide showed there was a difference; I was put back on the drug again, and I’ve got another year on that. It’s an infusion in the blood into the vein. I go in every month. Plus, the fact they do other tests, like take away 7’s from 100, drawing and things like that. My wife comes in sometimes because she gets asked questions too. We are also asked some of the same questions to see what I’ve forgotten or haven’t forgotten.

It’s a big commitment to take on this type of research but I think being a guinea pig is the right thing to do. I didn’t realise how much of a commitment it was going to be. In fact, the first month or two I thought, ‘well wait a minute, what have I taken on here?’ Trying to get my COVID-19 injection made life slightly more hectic, as we had to find a window between the infusion and injection so that it didn’t upset the drug I was getting. This ‘covid thing’ has added more work for us. Sometimes you think it’s too much work. It’s a lot more unpredictable. Plus, the fact that you cannot get hold of doctors when you want them, trying to wait on them picking up the phone. You’re pushed to somebody else, then somebody else. Chasing people down impacts a lot of your lifestyle because you’ve got other things to do.

There is not really anything that would put me off clinical trials. The physical thing of going in and getting infusions and meeting people there, nurses, doctors, and such like, it’s a complete break. You are in there for a couple of hours, or whatever it is, and you’re handing over all the responsibility. It’s a sense of relaxation and distraction. Yes, you come back to the problems that were there when you left, but research brings hope as far as Alzheimer’s is concerned. Of course, you’re always hoping it will get better anyway. Up to now, some people say I don’t have dementia, because it looks like I haven’t got anything wrong with me. I must say I’m quite chuffed about that, not fitting the stereotype. Some of them have been quite serious that my dementia is false. But those people, the people they are referring to ‘looking like they have dementia’ by that time it’s too late. There’s nothing you can really do for them, it’s the ones that catch it early that you need. I consider my situation; I’ve had it for eight years. Others have told us that the longest living person at that time was 14 years since diagnosis. Now I’ve heard of a person in Dundee who lived for 21 years. There are people even older than that. There must be different strains of this Alzheimer’s for these people, whether I’m one of them or not I have no idea.

We try and find out a bit more about it too. We were down in the borders, for the Jackie Stewart Iinitiative, and I fell in with this lady who was focused on the scientific side. It turned out she had never spoken to someone with Alzheimer’s before and she was more an experimental scientist. We had a long chat about it; I was interested in what she was saying, and she was interested in what I was saying. We have been doing other things to try and find out about things. I find it difficult through emails. I can’t take that in, it’s a waste of time. I’m far better speaking to people; I’m enjoying chatting with Rosie.

We can’t do research without participants. The person I spoke to in the Borders said that there should be a big difference within 5 and 10 years. They’re trying to see people and diagnose earlier. They were talking about injecting something that would help you tell if someone was going to go on to get symptoms in the next few years. If they had that kind of test, I think you’d be stupid not to have it. Sorry to be so blunt. I know of people who have lost loved ones to cancer, but they still avoid screening for early stages of cancer. I don’t know if its fear, but I can’t understand it. You’ve got to think of your family, things like that. If you might have a disease, you’ve got to think of others and try and do something. You’ve got to be bold and fight it.

Charlie

Spectrum of Research

The ‘gold standard’ for clinical trials is to compare whether a group of people trying a new medication experience differences to people who are taking a placebo, which looks the same as the new medication but does not contain the ‘active’ ingredient. In an ideal world, the research needs the two groups to be as similar as possible so that any changes the groups show can be linked to the medication. We know from clinical research in other disease areas that this approach can be incredibly effective in finding cures and treatments, such as cancer, heart disease, diabetes, etc. However, there are also many people living with different types of dementia who are either not able to take part in this type of research or do not have options for this research.

We need to both increase the amount of clinical research around other types of dementia and look at alternative approaches to research that allow others to become involved if they would like. We need to recognise the value of learning about dementia through the eyes of people with lived experience [3].

My first impression of research is white coat scientists; there is an assumption that research involves microscopes and is essentially biochemical/medical. I have been thinking a lot about this, and we need more research into what people with dementia want. Millions of pounds are pumped into finding a magical pill, but there is a desire among the dementia community to find other things that impact quality of life. Yes, it’s a terminal illness, but it doesn’t mean that nothing can be done to make things better. Nobody has any guesses about the speed of progression, whether I have five years, eight years, I might have twenty years. I just have no idea. My interest is in how research can enable people living with dementia and carers, and how I can make the best out of the good years. (Willy)

Partners in Research aim to celebrate the clinical trial work taking place alongside recognising the importance of social science research.

I increasingly want to bang the drum and make sure people consider how social interventions could slow down progression and ultimately save a lot of money in terms of health and social care. (Willy)

The number of people who choose to be involved will depend on several factors, including time, type of research, and feeling able to contribute to the topic area.

I do not wish for anyone to suffer through ignorance as we have and for the public to be more aware of the risk factors, signs, and symptoms of dementia and neurological conditions. I want the scientific community to engage with us as people with lived experience of the condition. (David)

Understandings of Research

People have different preferences for how much information they would like about dementia, which could also shape their research involvement.

I haven’t done a lot of research. I kind of just go with the flow. It can depend on the doctor and how much awareness they have of research. I feel like I’ve kind of drifted along with it. I don’t know how to make a difference. I’ve never been offered peer-to-peer support or a lot of information. I just want to know how to look after Eileen. I want to know the minimal amount of information to make a difference. (Stuart)

I think of research as reflecting on my experience and the experience of others to see if there are similar trends. I often find that if something comes up, I will then try and find more information on that subject. I want to educate myself and try and understand the system, but it is messy and tricky, and the rules are complex and bureaucratic. Even if we are aware of evidence-based practice, it doesn’t always get through to what’s happening on the ground. (Alyson)

The reason I started researching was simply because no one could answer any of my questions. Why did it happen? Why did my wife get frontotemporal dementia? There is so much we don’t know because we don’t have the knowledge. We need to have the knowledge, but we also need to spread and share that knowledge. (David)

I just accepted my parents’ diagnosis of dementia because it was something that I’ve worked with before. I had a two-pronged approach to research, in that it was important for me to know how to support both parents, as well as learn more about prevention or a cure at some point, whether that be now or in the future. In the meantime, we’ve got the here and now and how to support my loved ones needs. I kind of look with envy to other European countries who seem far more advanced in terms of how they support people living with dementia. The ethos needs to be about making people feel loved, wanted, and supported. (Alyson)

We know that research is fundamental to the progression of knowledge. Historically, this has been within research laboratories at universities or within hospitals. The process of information flowing between research institutions and the ‘real world’ is often slow and full of hurdles, and as a result, there is an ever-present feeling of ‘us’ and ‘them’ between researchers and people with lived experience. The ‘ivory tower’ of scientific knowledge excludes people from opportunities and makes it harder for people to access sources of knowledge. Involving people with lived experience in the development of research or research-related activities aims to build bridges between researchers and the community.

I have a complete bugbear about academic language, I mean I went to a presentation the other day and looked at posters on various research projects and I have no clue what they were about. I’m prepared to bet that nobody else did either, but most people are too polite to say. The language used was so dense and impenetrable. It should not be that only specialists in that area could understand, it’s like a game people play to exclude you from what is happening. Academics need to learn how to communicate in everyday language. (Willy)

Building a Partnership

In recent years, there has been increasing focus on the involvement of people with lived experience in the research process. There has been a shift in focus from participation to a more collaborative way of working with people to ensure that the research being done is relevant and meaningful to those with lived experience.

Research is important to people living with dementia, and I’m glad that researchers are seeing that carers and people living with dementia can contribute on an equal footing and should be treated with respect and acknowledged for what we are contributing. We are human beings who bring different things to our dementia experience. Come into our world and see us as human beings, not just a label. (Agnes)

It has been recognised that there is a limit to how much can be learned without including people with lived experience, as well as a need to rebuild people’s trust following negative experiences of participation or tokenism [4, 5].

My very first research project was a one-to-one at the house, it was a PhD student, and I never had anything back. I was trying several different dementia drugs, and it made me think, ‘I don’t want to be a guinea pig anymore, I want to get involved’. When lockdown came, I needed something to do, it was a catalyst to research involvement. That’s when I went to a meeting about the Life Changes Trust, and I got involved in decisions about funds. I soon realised that I’m too independent to be a member of anything. I thought well I like reading and researching so I started that, and it seems to be working well. (Martin)

There is a gap between what researchers see as important and what people with lived experience of dementia see as important. We need to bridge the gap between academia and the nitty gritty lives we live. When I talk with other people with dementia, we see that we have things in common that we don’t read about in textbooks. We would like a voice—it’s only fair, and only right. I hope a shared sense of purpose comes from collaboration. There are things we all want that I think are givens in terms of cures and medicine, but there’s much less on how to live well with dementia and cope with those little things that are truly confounding. (Willy)

There is not much research involving people living with dementia as contributors. Partners in Research offer an equal partnership to bounce ideas off of each other. It’s not about us versus them it’s about sharing our experience. We have got to learn from each other, work together as a team. The legacy of Partners in Research will open doors into things like heart diseases and cancer as the blueprint for future research. (Fred)

We want to be in the driving seat of research, but we still need a sat nav. We need a platform where we can put our point across and have a voice. At the end of the day, there’s a common goal in doing something about this horrible condition so there is a need to talk to people with it. (MAQ)

Researchers are human beings too; they need to give some of themselves as well, so that we are researching together. It is also important that research makes a difference to the person. The process needs to be simpler to ensure that people can get on with the work. We will all be learning from each other. Our experiences and academic expertise make for a more powerful collaboration. (Agnes)

Examples of Best Practice in Co-produced Research

Over the course of writing this book together, many of the co-authors have been involved in co-produced research including, an Evaluation of The Life Changes Trust [6], The Smarties [7], The Ecredibles [8], and BUDDs [9]. We share some of our research experience here and the impact it had on us.

Meet The Smarties

The Smarties are a co-produced research group made up of people with young-onset dementia. The group collaborated on Rose Vincent’s PhD research, exploring volunteering and dementia through the co-analysis of Dementia Diaries [10]. As part of their work together, The Smarties [7] produced a guide to support other researchers looking to do co-production.

Co-author Chris shares her experience of being involved.

I’ve done quite a lot of research groups and things. The Smarties is just absolutely, simply the best, and I think that was down to the facilitators of our group. Rose had really taken the time to speak to us individually before we even started in the group to find out things like how our dementia affect us and ask what she could do to make it easier for us to join. We had, not rules, but a code of conduct that we would stick to. I think it is so important to have things like that and everybody is different. So that respect was gained before we even started coming together. I think it also worked because the group was chosen well, and we gelled.

It was also the little things like getting the little goody bags from Rose, and just the excitement of having a little sash of coffee, and a little chocolate bar, it just made you feel appreciated. Not that I expected anything, but it was a ‘Oh, that’s really nice!’. The vouchers were also lovely, and again I didn’t expect to get anything for it, but it enabled me. I was able to buy things that I could use, mostly crafty stuff. That gave me more of a sense of purpose as well. So it was going the extra mile, and making us feel that we were appreciated, and we were valued. I think even the fact that you got a file and a notebook that would have been enough, because very often we have got to go out and buy them ourselves. It’s about not assuming that people just have all those materials to hand. Generally, people living with dementia are on benefits and perhaps do not have the money to go out and buy these.

It was brilliant, everybody was listened to, everybody was included, and it was a safe place. It’s hard to get that. Feed into the safe place. Even though there can be topics that are awkward, it’s okay to talk about anything. If you’ve got the right facilitators, you can gain the trust of the people within the group. Rose and Rosie both did that, and it is rare. It is rare to actually see that. (Chris)

Another Smarties’ member, Keith Oliver, also shared his experience of taking part in research.

Since being diagnosed with Alzheimer’s disease at age 55 in 2010, I have tried to deal with the frustration and challenges it presents by engaging in a range of worthwhile dementia projects, some of which have been linked to my three driving passions. First, there is a thirst for knowledge and to share this knowledge. Second, there is a desire to teach and work with supportive undergraduates and postgraduates. Third, there is a need to connect to others. Research ticks all these boxes for me. I am a long-term member of the Alzheimer’s Society Research Network and have sat on one of their GAP (Grant Advisory Panel), usually as the only person with a diagnosis.

I have read and advised from the side-lines on many dementia-related research projects. The best projects are those that genuinely seek to involve me and others with lived experience in the direction the research is taking. The Smarties project supporting Rose Vincent’s PhD was an excellent example of this. Co-production does create better research—it is authentic, impactful, meaningful. (Keith)

Dementia Alumni

The Dementia Alumni includes two of our co-authors, Agnes and Martin. They worked with DEEP to start ECREDibles. Martin shares some of his time with the Dementia Alumni.

Somehow, I don’t know how, I got involved in looking at toilets and dementia. We literally went around photographing toilets, and you had to answer if they’re dementia friendly or not. The worst example was a local Tesco because in the disabled toilet there was a mirror on the door opposite the loo. We have published a report called ‘A Public Inconvenience’. We presented it in Edinburgh to civil servants. I met Agnes through that. She said, ‘Do you want to join the “Dementia Alumni” because someone had gone into care so is unable to participate anymore?’.

The alumni created a multiple-choice game for 10-year-olds. We ask questions and children run to either answer A, B, C, or D.

We did a trial run down in Edinburgh. It was obvious that they could not care less about the first couple of questions, but after that they did, they would stop and think about the questions and answers. With one question, one person got it right and she stood there on her own and you could see she was thinking, ‘should I move?’ but she was adamant she was right, and she was. Afterwards they felt comfortable enough to ask questions, such as ‘Does dementia hurt?’, ‘What does it feel like?’, things like that. Agnes and I felt that they were really quite hard questions to answer. The feedback we got was that most of them went back and told their parents about it and discussed it with them. Most of them knew a grandparent with dementia, but obviously the last stages. So, they were quite surprised that there was an earlier stage. It was James or Agnes who decided we had to do something multigenerational. That was why the Dementia Enquirers funded it. We are ready for further funding to carry on with a group called Science Ceilidh. (Martin)

Dementia Enquirers

We have covered examples across the spectrum of research, from clinical trials with very strict criteria for who can take part to research that has been designed and developed in collaboration with researchers. The other end of the spectrum is research that is based in the community and led by people with lived experience, with advisors available to support research development.

The Dementia Enquirers are a group of people living with dementia who have been funded to support several grassroots projects designed and carried out by people living with dementia. The core team of Dementia Enquirers known as ‘The Pioneers’ work with Innovations in Dementia to review research plans, consider ethics, and help these projects. The Pioneers and the projects they have funded provide an example of user-led research, or ‘putting people with lived experience in the driving seat of research’. The Pioneers are supported by several Advisors who have expertise in the areas of dementia, disability, and mental health. The role of the Advisors is to help make research more accessible, provide useful resources, and troubleshoot research queries. The group shared some of their experiences in academic journals [11, 12], as well as research guidebooks [13, 14], films, webinars, and podcasts [15].

What We Would Like to See from Research Going Forward

Our final section explores what research our co-authors, research participants, and NDN would like to see from research in the future.

When people have given up their loved one to care outwith the home, have they been satisfied with that? Was that their decision process? Were other factors involved, you know? Also, learn of other people’s experiences of care and whether episodes of care have been missing for them. Have they just gone ahead and covered for it because they have maybe been retired and they do not have the pressures of work or whatever, you know? Has it not been as big an issue for them because they have not had the pleasure of going out to work or anything else? I’d really be interested to find out how many people have missed out on episodes of care. (Alyson)

It is great to see how much the study portfolio within the NDN has expanded over the years to include a spread of neuroprogressive conditions and the ability to offer a variety of different types of interventions (both medical and psychological/behavioural). Moving forward, I would like to see more health and social care research to ensure that we bridge the gap in health inequality and look at the best ways to ensure healthcare access and equal treatment for all. I would also like to see more studies looking at prevention of disease and interventions to support this. (Tiffany)

Obviously, I’d like to see a cure for dementia, and you might be the person in a trial which finds positive outcomes. We’re getting closer! I also value research that looks at issues chosen by people with lived experience. We continue our efforts to ensure that Scotland is involved in all kinds of studies involving people with dementia. My lived experience is of a nurse, a manager, and a researcher, as well as a granddaughter to my beloved grandma who had dementia and my mother, who had Parkinson’s. We all have something to contribute, and I would like to see more research from the perspective of people with lived experience—‘What is important to you?’ and ‘How can we answer these questions?’ (Emma)

I want to see future research focus on speeding up the transition process into care homes. One person can only look after a person with dementia for so long until it gets to them. I asked about this within the first few years since my diagnosis. I was given a phone number and told you just call that. However, I’ve discovered from a few people that it just doesn’t happen like that. The people at the front, who are organising these homes, they’re making money, which I think maybe is the problem. We need to tackle this and do better. It is so important for a person living with dementia and their loved ones to have a timely, supported transition into care homes if that is what is best for them. (Charlie)

Stuart & Eileen’s Story

For 35 years, I taught in an Angus secondary school before I was fortunate enough to get early retirement in 2006, when I felt I had done my stint. Eileen had started off working in two well-known Dundee factories (Carhartt’s jeans and Timex watches) but spent most of our married life helping to bring up 4 children, 9 grandchildren, and 25 foster children.

We were lucky enough to have about eight years of retirement together before the first signs of forgetfulness began to be noticeable (see Fig. 5.2). I made an appointment for Eileen at the GP, who gave her the usual memory test. When she suggested to Eileen that there was a problem and that she wanted to refer her to the hospital, all hell broke loose. Eileen refused to take any part in tests for the next two years, and the matter was not discussed (I knew my place). Slowly things deteriorated. She would get disorientated, repeat herself, and then began to have bladder control problems. When we next returned to the GP, Eileen did not appear to be aware that there was a problem, and she quietly went through the tests that led to a diagnosis of Alzheimer’s disease in 2016. She was 69 years old at this time.

Soon, Angus Council appointed a Care Manager who was then responsible for Eileen’s care plan and effectively coordinated carers and specialised equipment as the need arose. After that first alarming visit, Eileen never showed any distress about her condition. Not to say there were no problems (Fig. 5.2).

Fig. 5.2

Stuart and Eileen in 2015

Our last holiday to our eldest son in the USA was in 2015—she was just too erratic for air travel after that. We managed a week’s holiday in London in 2016 (bladder control was becoming a major issue and I had not yet found out about Tena Lady Pants or disabled toilets) then cottage holidays in the North of England with our daughter’s family. We had to keep an eye on Eileen all the time in case she wandered off. Indeed, this was also a major problem at home. She could no longer walk the dog on her own, and on one occasion, three police cars were searching for her before she walked back around the corner completely unaware of my distress (we never did find out where she had been). Eileen got a tracker to go around her neck and still managed to ‘escape’ the house and walk a mile crossing a busy road before I tracked her down on my phone.

An even more difficult time started in late 2017 when she would become really argumentative, especially when I tried to get her changed for bedtime. On two nights over Christmas of that year, she talked continuously for hours until I had to find another bed. Then, after a few distressing months, this too passed (Fig. 5.3).

Fig. 5.3

Eileen in 2017

By now, she was finding it harder to walk. I acquired an old wheelchair for the summer of 2018, and we had a lovely time visiting local towns, enjoying the weather, and having picnics. However, she appeared increasingly sleepy (it turned out her tablets for reducing agitation were becoming too strong for her); until October of that year she could not get out of her bed for a few days. The GP reduced her tablets, and she wakened up, but never walked on her own again. The bathroom was converted into a wet room in early 2019. I was now completely responsible for her care—washing, cooking, cleaning, showering, toileting—although she still chatted and recognised visitors.

The care manager was actively searching for a suitable care company, and after two false starts, we engaged our present firm in July 2019—four visits a day! This has been a tremendous benefit and has allowed me to keep Eileen at home even through COVID-19. Gradually, all speech and recognition has gone. Eileen is completely dependent on me and her carers. After her shower and breakfast in the morning, she is returned to bed for a nap, and this is when I get the chores done, a badminton session on Tuesday or a coffee with a friend. I have been offered longer breaks but personally have not felt the need to be away from Eileen for any longer. She has only one tablet a day as thankfully she has been healthy otherwise in life. She has a good hospital bed, a recliner chair, a modern wheelchair, and a ramp at the front door—all provided and serviced by NHS or Social Work. We go for short walks or enjoy sitting in the back garden. Our nearby family visits regularly, and those farther away keep in touch by phone and video. The few times we have needed medical help, the GP has attended promptly. Speech therapists (for swallowing), physiotherapists, a hairdresser, and a chiropodist attend periodically as needed. She now dozes a lot but sleeps all night. Her argumentative period is long behind us, and I pray she is at least content (Fig. 5.4).

Fig. 5.4

Eileen in 2021

Stuart (husband of 51 years and carer)

Sue’s Story

My lived experience of dementia was through my experience of my mother’s Alzheimer’s with which she lived for 15 years until she died in 2005. So, it was a long time ago and quite a lot has changed since then. A change for the better is that living with the disease is far more openly discussed now than it was then. I often, particularly as my mother’s only surviving child, felt very alone in struggling to get the best care for her, and like to think that nowadays it might have been a little easier. I remember how important it was for me when my employer arranged for me to talk to a carers’ support person, which made all the difference to how I felt about blaming myself for the inadequacies of my own support for my mum. Just a couple of meetings made so much difference.

However, listening to the many stories of people in the Partners in Research co-author group, where I often felt very humbled, I learned how much further still there is to go. I think a lot more is known about ‘best practice’ in professional help and care, but the resources to provide it are just not remotely or evenly available. Within our co-author group, there was so much wisdom about what that should look like, which boiled down so much to a combination of enough time and emotional sensitivity, continuity of relationships, as well as knowledge and experience.

I came to the group via a doctor member of our family who knew about Rosie’s work and suggested I might volunteer to be part of it. I think she thought that because of my experience with my mother and because, for many years I was a social worker, I might be able to contribute something. I was constantly amazed at the input of the others in the groups with their current lived experience. So, I think I learnt far more than I contributed, in particular the importance of distinguishing different types of dementia and the differing patterns of symptoms, and the courage and resourcefulness of those with dementia and their carers. When I read the others’ stories in the draft of this book, I was further humbled to think that those who talked so positively and constructively during our sessions had been through and were going through so much. It has been a long time since I was a social worker, and when I think back, I am appalled at our lack of awareness of dementia, and the suffering that those with it, and their carers, must have experienced. It was a long way from the experience of co-creating this book, not that there isn’t still a long way to go. It would be great if that way included new medical treatments, but even without these, a lot more can be done with resources and guidance from projects such as this. This was also my first experience of research and user partnership, and I have become a big fan.

Sue

Rosie’s Story

Over the course of writing this book, I have gone back and forth about whether I should include my story. It felt strange to put my story alongside the co-authors and their experiences. The group has been so incredibly generous with their time and expertise, and it is very much their voices that I would like to spotlight. They have also taught me that for collaboration to work, there needs to be recognition of the expertise on all sides. Therefore, I include some of my story to help emphasise the need for researchers to give some of themselves to gain trust and understanding.

I chose to study psychology at Cardiff University, as it included the opportunity to work for a year within a psychology placement. I knew very little about older adult psychology or dementia before starting my placement at St John’s Hospital in Livingston. However, this placement taught me so much about dementia and the challenges faced by older adults. It also taught me that there were so many unknowns in the field and evidenced-based practice was limited by the lack of research in the area. In some ways, this was the real turning point for me. The rest, as they say, is history. I went onto earn my PhD, exploring perceptions of stigma and future outlook for people with early- and late-onset Alzheimer’s disease; I was awarded Fellow status for teaching with AdvanceHE; and I became a Chartered Psychologist with the British Psychological Society.

I have been so fortunate that the NRS Neuroprogressive and Dementia Network has been a huge part of helping me achieve my goals. They part-funded my PhD with the University of Stirling and have worked with me on and off for the last 10 years. They have always provided me with a home. I am so grateful to all the team members who took me in when I was new to the world of dementia research and gave me the confidence and support that I needed to become a dementia researcher in my own right. I am so incredibly proud of what we have been able to achieve together and the trust they have placed in me to cultivate a community of people with lived experience.

In the last five years, I have been particularly interested in co-production and the power of research that is designed and developed by people with lived experience. Co-produced research allows me to apply my interest in teaching and developing accessible research activities while working closely with people with lived experience. One of the biggest challenges of co-production is that it takes longer than many other approaches, and there needs to be flexibility for different peoples’ needs and preferred direction. Funders need to provide space for this; otherwise, researchers are restricted in what they can do collaboratively.

Of course, it has not always been an easy experience. Loving your job and the people you work with doesn’t take away from the fact that dementia is a progressive condition that can have huge physical and psychological impacts on the person diagnosed, as well as their network of family and friends. It is hard knowing that while we have been able to put a spotlight on a range of experiences, there are still many missing voices of people living with dementia and their loved ones. It can also be difficult to balance different voices, particularly as some people may need more support than others.

It is so important to surround yourself with a support network and to establish a good work/life balance—I can’t say I’ve achieved this, but I am very aware that it’s something that should be prioritised. Thank you to my amazing friends and colleagues (past and present) who helped me work on this.

Over the course of my time with Partners in Research, I have faced many personal changes. Chronic pain from fibromyalgia and arthritis has resulted in very limited mobility. I have learned a lot of transferable knowledge since I have experienced a lot of these changes. Some days my disabilities are very visible, for example, using a wheelchair; and on other days, not using a chair, it is more of an invisible disability, and I have faced some of the doubt and challenge from others assuming I have no reason to use a disabled space. In some ways, COVID-19 benefitted me in that it made remote working the norm, and so I was able to continue working much more than had I been hospital-based. However, the changes have still had significant impacts on my personal and professional life. Partners in Research have helped me to adjust to disability, understand more about applying to things such as Personal Independence Payments (PIP), and the value of having access to a Blue Badge. Adjusting to disability is not a linear process but a fluctuating mess of acceptance, grieving past abilities, and frustration about new limitations. The group has shown me the value in taking ownership of diagnostic labels, challenging stigma, and sharing your story to help others.

To the Partners in Research and the various co-production groups I have been part of, including The Smarties, BUDDs, and the Dementia Enquirers, thank you all. I have learned so much from you. I am so lucky to be witness to so many of your stories and expertise, and I am proud that you have felt able to share your stories with the world. I am confident that there will be others who feel seen in your experiences, and hopefully that will be a source of help and comfort.

Finally, I could not tell my story without including our honorary co-author, Rory the cat! It’s safe to say that pets have stolen the show in regard to online meetings. Rory has been a constant presence in the group drop-ins and in book writing (Fig. 5.5).

Fig. 5.5

Rory ‘helping’ with the transcript edits

She brought a lot of joy to the group as well as some welcomed support when tougher topics were being reflected upon. Thank you for embracing Rory as our team mascot. She loves showing off to you all.

Rosie