Partners in progress: Advancing dementia research through collaboration

Abstract

The lived experience of dementia, the views of the caregiver, and the pursuit of scientific understanding by researchers need to converge for holistic and collaborative action to improve dementia research. However, there often exist silos and division between these groups, which limits relevance and innovation. This paper aims to bridge this divide by offering a tripartite exploration of dementia research through three distinct, yet interconnected, lenses of a person living with the disease, their dedicated carer, and a researcher actively engaged in dementia research. This collaborative endeavour highlights the need to move beyond the traditional (and outdated) dichotomy of “subject and expert”. By weaving together personal perspectives and insights in a multi-voiced approach, we highlight the opportunities and potential that can emerge from working in partnership and using a relational approach.

There is a world-wide impetus for better partnerships in dementia research. For example, the World Health Organisation (WHO, 2022) developed a blueprint for dementia research, the first WHO initiative of its kind for noncommunicable diseases. The blueprint provides insights on different drivers of research and includes the importance of involving people with lived experience of dementia throughout the research development process and in operationalising the drivers of research.

The lived experience of dementia, the views of the career, and the pursuit of scientific understanding by researchers need to converge for holistic and collaborative action to improve dementia research. However, there often exist silos and division between these groups, which limits relevance, innovation, and fundamental understanding and respect for each other’s roles and challenges. A person diagnosed with dementia may often feel somewhat of a “subject” - observed by and acted upon, by those treating or studying them either medically or through research. The carer has often been ill-prepared for a life that has seen them catapulted into a challenging world of a diagnosis of dementia in their family/friend, managing finances, undertaking caretaking duties, and seeking out the latest information and research to ameliorate symptoms and to slow disease progression, whilst managing their own health and wellbeing and responsibilities. Both people living with dementia and carers can look to researchers to ease or solve problems. Yet, researchers are often facing the challenges of time and funding, and perhaps limited understanding of the challenges facing the dementia community.

Division and disconnection between these key groups can hinder progress in dementia research. This perspectives paper aims to bridge this divide by offering a tripartite exploration of dementia research through three distinct, yet interconnected, lenses of a person living with the disease, their dedicated carer, and a researcher actively engaged in dementia research. This collaborative endeavour highlights the need to move beyond the traditional (and outdated) dichotomy of “subject and expert”. By weaving together personal perspectives and insights in a multi-voiced approach, we highlight the opportunities and potential that can emerge from working in partnership and using a relational approach.

John’s perspective as someone living with a diagnosis of dementia

For the last forty years I have worked as a surgeon, undertaking complex surgery both in Australia and overseas. With my leadership and expertise, I have established motor vehicle, workplace, and major event injury assessment processes. Within the community I have been actively involved in Rotary International for over thirty years, with personal involvements including the immunisation of children in India against polio, building low-cost housing in Lautoka, Fiji, and restoration of a kindergarten for the island children on Taveuni, along with many other local and international hands-on projects. Professionally, conferences, peer discussion, and the reading of the latest literature have been the norm. Socially, my wife and I have travelled widely, supported live theatre and music across all genres, dined out with friends, and enjoyed time with family.

I contributed in all these professional, community, and social activities until confirmation of the diagnosis, in 2015, of Alzheimer’s disease. In a single moment, I became disconnected from that professional, peer, and social interaction. The loss was profound. Rather than being judged for competency, suddenly the emphasis was on incompetence. Yet I am the same person, with a thirst for knowledge, a strong social conscience, a love of debate, and I just happen to have a condition called Alzheimer’s disease.

Memory does not define a person. It is simply one of the tools humankind has, to survive. But with the diagnosis of dementia, it is almost assumed that all other skill-sets disappeared. They did not. They have not. I haven’t lost my skills, I merely have difficulty processing and retaining the message, since the components of the message do not always line up sequentially, or, from malfunction within the brain, message components simply drop out of the sequence. As a person with dementia, it is very frustrating knowing what the end point of an activity should be, but the forgetting of a step, or a piece of information, makes arriving at that end point more difficult. It is like trying to build a Lego model with several of the key pieces, or instructions, missing. To the intolerant or impatient, it is seen as stupidity. It is not.

To draw an analogy: I speak Hungarian. I can speak it at a normal level of volume, and can convey a perfectly normal message, but if you do not have the tools to receive that message (i.e. the ability to decipher and act on that language) it is simply gibberish to you. You need the tools (in this case - knowledge of the language) to make sense of it.

Dementia HAS changed me. Where previously I could confidently assemble facts, weigh them carefully, and give an opinion on topics of medical and social currency, now I remain tight-lipped, unsure if I have gathered and retained the full facts. When I do involve myself in conversation, an impatient look, or a comment such as “Yes, you already said that” will render me silent, rather than annoy or frustrate a listener. I do not have the speed of recall, or the judgement of situations, to be able to now drive safely. The logic side of me has made that decision. The heart in me grieves at the loss. Life with dementia also takes on a Plan B component: I need to fly Business Class so that there is less a queue to an urgently-needed toilet; I need to take a written list to the supermarket – and a mobile phone – in case the brand on my list is not there, and I may have to find a substitute. Family dynamics change. As a partner, I should be half of a team – a support when needed, an easer of life’s burdens. Now, my wife, Cathy, bears that burden totally. Despite her mostly good humour, I feel guilty that her busy life and independence have been abruptly curtailed, as she watches out for me to ensure that no harm comes to me. She is an active co-participant in research, providing insights into our living experience, assisting with logistics, and being a team partner in advancing research knowledge. Meanwhile, as a parent, I should be a wise resource. Now I am simply told outcomes of unheard discussions. As a grandparent, I should be the super-hero – standing beside and gently guiding grandchildren along life’s challenging path – exploring the wonders of the world together. Instead, the grandchildren lead me.

I still do the things I love, but it might be a different experience now. For example, I read avidly. I may not remember the article that I have just read, but my jotted notes tell me that I have processed the information correctly. I do not always remember details of my golf game, but I do feel extremely self-satisfied after a good game.

As a doctor, research has always excited me for the breakthroughs it brings to the lives of patients. I have always encouraged patients to take up the opportunity should it arise. When I was diagnosed with Alzheimer’s disease, the first question I asked my specialist was if there was any research with which I could be involved. Participating in research is an important part of my life, and, for me, taking part in research projects is a contribution that I am able to make towards preventing others, in the future, having to live with dementia, and for improving the lives of those diagnosed with dementia, and of their families and friends. Importantly, the research team have become supportive and understanding friends. They are a key part of my support team. They treat me with respect and allow me the privilege of imparting information to them. It is incredibly reassuring. One of the things that I appreciate about my involvement in research is that I do not need to remain tight lipped as mentioned before. I recognise that my research partners respect my opinion and expertise. I am the expert in my own life, and I can and should share this to the research world, in order to make a difference. Offering my collaboration, expertise, and service to the research world is part of who I am. As a medico I have, so often, seen first-hand the benefits to patients, and to society, of research. I have passionately supported it. Whilst never expecting to be, now I am a beneficiary of its outcomes.

We all present a face to the world of how we wish to be perceived. Yet we have insight into our abilities, and the social mask that enables us to reflect the image we wish to present. I too have insight into my abilities, or lack of these, and that self-doubt that this disease brings, reflects in my lack of trust in myself. Others, too, whether consciously or sub-consciously, now have a loss of trust in my abilities. That, for any thinking adult, is the greatest pain of dementia – the loss of the dignity, the loss of self-respect, the loss of the community worth of the “WHO I AM”.

Yet, the person I have been, throughout my life, IS still there. I still love music and theatre; I still love time with family; I still love exploring the world; I still love to hear of technological and medical advances; I love to participate in dementia research; I still love intellectual debate.

Rather than reflect on “the disease I have”, it is a pathway for me, and for so many others, to retain the “who I am”.

So who am I?

I am a doctor; a neighbour; a friend.

I am a husband, a father, a grandfather.

I am a person; and I just happen to be living with dementia.

Cathy’s perspective as a carer

I cannot speak for those in the profession of caring or in the profession of research, other than to commend them mightily for their commitment to constantly lifting the bar on the professionalism in those industries. Many are at the forefront of world-leading dementia care, through research; through innovation; and through determination to provide excellence in dementia care.

But I CAN speak both as a long-time dementia carer – first of all, as a carer for my parents-in-law who both had dementia, and subsequently for my beautiful and amazing husband, John, who was diagnosed with Alzheimer’s disease almost a decade ago.

Secondly, I can speak as a conduit for a number of those attending PALZ – Professionals with Alzheimer’s and related diseases, who share their caring journey experiences with me. My experience as a carer inspired the establishment of PALZ. Shortly after diagnosis, John attended a respite activity, and the activity was to bowl a wooden ball along a gutter. He lasted ten minutes before ringing me and saying: “Get me out of here”. He then came home and watched a Discovery channel show on Stephen Hawking and his theories. Now at a later stage of dementia, John has multiple health issues. Still, he laughs at comedies, enjoys interesting documentaries, attends PALZ meetings, and participates in research. I see, as his wife, that John continues to try every day to input into the world.

The diagnosis of dementia is a shattering one for most people. Diagnosis can bring instant, often total, disconnection - both intellectual and social. The person diagnosed needs to acknowledge and process changes to their sense of identity, their peer group, their social and intellectual stimulation; and this too is true for carers. Living with dementia and caring can be the loneliest role in the world. For both the person diagnosed and for the carer, moving out of a demanding workplace role can leave a mental abyss. Thus, PALZ reflects abilities, not inabilities. PALZ seizes on strengths and reinforces them. PALZ enables so many of us who are in this same situation to retain that dignity, self-respect, community worth, and intellectual capability. For some, dementia cafes offer a good interaction, but for others – especially those people with dementia and their carers from professional backgrounds – PALZ facilitates their ongoing need for robust peer interaction and discussion, challenging presentations, and stimulating intellectual and social discourse. The day of diagnosis of dementia does not spell the end of intellectual and social engagement. PALZ is now a global organisation across two countries and seven groups (current) with members from managerial, academic, business, and multiple other professional backgrounds.

John and I strongly agree on the importance of enrichment for both body and brain for us both, and this is where our involvement in research is fundamental. Since the earliest days of John’s diagnosis, we have both felt that: “There has to be something good to come out of all this!” It has motivated both of us to take up every opportunity to be involved in research.

There is so much research that people living with dementia and carers alike can become involved in, and some treasured, new friendships have been borne out of those opportunities. Feeling a sense of worth through that involvement in research is incredibly heartening and validating. Research can also help people to connect with others, and for John and I, we have always felt it was worth the time out of our busy schedules to contribute. We have contributed as research participants in drug trials and in non-drug trials (such as participating in interviews, focus groups, workshops and filling in surveys, and also in longer term studies of programs and interventions); as members of advisory and expert groups; participated in online and in-person projects; presented at conferences; sat on panels; co-written and submitted (and won!) grants; and now, co-authoring a journal article.

Research has given us a sense of purpose to make a positive difference in the lives of others. This has been so rewarding. We benefit too, from all the opportunities to learn about dementia and about research, and the social stimulation of meeting people who are trying to prevent dementia, treat dementia and to improve the dementia experience for people. I have gained emotional support. Living with dementia and caring can be very isolating and participating in research has connected John and I with other people who share similar experiences and provide a sense of community and emotional support. We have shared stories, worries, joys, funny moments, exchanged tips, and found strength in knowing that we are not alone.

Carers’ perspectives and experiences are invaluable in shaping dementia research and care practices. Our participation can help researchers design and develop more effective interventions, improve care delivery, and ensure that the needs of the dementia community are considered in decision-making processes.

Participating in dementia research has offered us so many unique opportunities to contribute to a meaningful cause, gain knowledge, find support, influence how care is provided, and make a positive difference. It has offered us fulfillment and motivation, a sense of worth and purpose, and hope for the future.

At a time when life is cataclysmically disrupted, researchers need to show understanding, respect, compassion, and to provide research projects that are relevant to needs. Work with us to identify what research is needed. Dementia care research needs to come from both the heart – in your choice of profession – and your head, through your comprehensive training, and a combination of both, in partnering with the dementia community. Ask us about what research would help in improving our experience.

Anita’s perspectives as a researcher

I am a clinician researcher. In my research, I specialise in using aspects of implementation science, change management, co-design methodology, and in embedded engagement for more rapid research translation into practice and policy. I am committed to collaboration and engagement with policy makers, the aged care industry, and most importantly, those that stand to benefit most from my work- older people, and those who are at risk for, or are living with dementia, and their family members and carers. As a researcher, I can offer my services as a bridge between the world of lived experience and the wider landscape of academic knowledge and scientific inquiry, with my work focused on seeking understanding and solutions.

Why do I, a researcher, believe so strongly in partnering with everyone, and in particular, with the people living with dementia and their family carers? Because their involvement in research leads to innovation and excellence. This ultimately improves the quality of life of those impacted by dementia, which is why I became a researcher in the first place. Additionally, because it’s the right thing to do. Involving people living with dementia and carers in research is not only a matter of inclusion, ethics, and respect but also a strategic approach to improving the quality and relevance of dementia research.

I have had the privilege of collaborating with John and Cathy since 2018. This researcher/consumer partnership has resulted in many collaborations and a strong mutually beneficial relationship and friendship. John and Cathy are integrated members of the research teams we work within, and their time and expertise is remunerated, just like mine is as a paid researcher, and each grant application we write reflects this. To ensure inclusive research, the team uses co-design principles such as shared decision making, equal partnerships and creativity and innovation (Sanders & Stappers, 2014) to conduct relevant and useful research, enhance outcomes and outputs, improve the quality of services, enhance richness, relevance and real-world applicability of study findings, and to ensure results are more likely to be useful, effective and sustainable (Trischler et al., 2018). Our co-design work (e.g., Goh et al., 2022) emphasises meaningful, equitable and collaborative partnerships between organisations and all impacted stakeholder groups (much like Burkett, 2012) to ensure development of products, resources and services that addresses actual needs. We build each other’s skills and mentor each other, and we have shared goals of:

1. Harnessing unique perspectives and insights that enhance meaningful and impactful research: The involvement of people living with dementia and carers significantly improves research findings, including and especially of validity, feasibility, relevance, acceptability, and impact. They possess unique perspectives, experiences, and insights, which are invaluable in shaping the research agenda, ensuring that it is focused on addressing the priorities and needs of those most affected by the disease. Their knowledge and experience should inform research questions, the design of research (including identifying potential biases and appropriate outcome measures and refining data collection methods). Their insights are also key in interpreting research findings, ensuring results are accurately understood and communicated in a way that is meaningful to the dementia community. People living with dementia and carers can also provide unique perspectives on whether research, policies, and practices are aligned. Active involvement in research also develops a sense of ownership over the findings and their application. This leads to a stronger commitment to implementing solutions, optimising their long-term sustainability and impact, and improving translation to practice and policy.

2. Promoting trust and collaboration: Trust and collaboration between researchers and the dementia community leads to more inclusive and participatory research environments. It helps to ensure that research is conducted with integrity, respecting the rights and well-being of participants and communities. Researchers gain a deeper understanding of contexts and priorities, while communities develop trust in the research process and see its potential benefits for their lives. When there is trust then the dementia community are more likely to actively participate in research and assist with project recruitment.

3. Empowering individuals and communities: Participation in research empowers people living with dementia and carers by giving them a voice and a sense of agency. Gaining more knowledge and skills enables the use of research to advocate, inform policy decisions, secure resources, and hold institutions accountable. Working in partnership shifts the power dynamics, turning people from passive subjects into active agents of change.

4. Capacity building in research: Research partnerships result in mental and social stimulation and upskill individuals with the skills, knowledge, and resources needed to conduct, and use, high-quality research. By strengthening research capacity, the knowledge of and use of evidence-based policies and practice improves. Evidence-informed and based practice is fundamental to providing high-quality and safe care, as it de-emphasizes unsystematic clinical experience and places greater emphasis on evidence from high quality clinical research, especially randomised controlled trials (Brownson et al., 2018).

5. Improving efficiencies in research: Including everyone from the outset can reduce unnecessary duplication of work, wasted effort, and maximise the use of time, funding and resources.

6. Contributing to society and the dementia community: Participation in research can help all involved to feel like a valued member of society who is using their skills and expertise to contribute to shaping their own futures and to the betterment of the community, and to make a difference for current and future generations.

In the time of increased recognition of the value of research partnerships and inclusion of lived experience, involving people living with dementia and their families in research is crucial to effective dementia research (Goeman et al., 2019; Mann & Hung, 2019; Frank et al., 2021). I want all dementia research to be worthwhile and have impact (mine, and everyone else’s). When decisions are made without the input and voices of those affected, the outcomes are often unjust and fail to address the true needs of the community. In the 20th century, the phrase “nothing about us, without us” gained prominence within the disability rights movement (Charlton, 1998). It is a phrase that I think of often in my work, as a powerful declaration of self-determination and a call for inclusive action. “Nothing about us, without us” embodies the need for autonomy, respect, and meaningful participation in decisions that impact one’s life. It’s a reminder that true inclusivity in research requires not just listening to often-marginalized voices, but actively empowering them to be drivers of research agendas. In this way, research will lead to more equitable and effective solutions. This inclusive approach is not just about consultation or representation; it is about creating a genuine partnership where the voices of those directly impacted are not just heard but their advice followed.

It is crucial that dementia research is inclusive and in partnership with the dementia community, regardless of factors such as diagnosis, cognitive impairment, sex and gender, language, cultural and linguistic background, education attainment, and socio-economic levels. As John said, just because he has a diagnosis of dementia, he is still a person, and one who hasn’t lost all his skills. I agree with Cathy that our work needs to reflect abilities, not inabilities, and for our work to seize on strengths and reinforce them. As researchers, we have the responsibility to prioritise ways of amplifying the voices of the dementia community and ensuring their involvement in driving the research agenda, and in the conception, design, development, testing and implementation of research. As researchers, we can help to nurture informed, equitable, and sustainable partnerships between everyone. As researchers, we have a responsibility to provide the grounds for people to feel confident to participate, as equals, with their own lens of lived or living experience. Everyone is the expert in their own lives.

Partnerships are essential for bridging the gap between discovery of new knowledge and application- in other words, to move science to practice and policy. By fostering partnerships, research can become an even more powerful tool for improving the lives of people living with dementia and their carers. It is a win win situation. It is an investment that pays dividends not only for the scientific community but for society.

Conclusions

As three individuals, we have shared our perspectives, not as isolated voices, but as a chorus united in experience and mission. We offer our vision, where people living with dementia, and their carers, are included in their own decision-making and are key partners in research projects and in driving the research agenda. The time of “doing to” is over. It’s time for “doing together”.

By fostering collaboration, trust, empathy, and mutual respect, it is possible to conduct research that is relevant, impactful, and ultimately benefits those living with dementia. A holistic view ensures an understanding of the value of each perspective in dementia research (and wider afield). Together, as a research triad of researcher, carer, and person living with dementia, we have learned much about each other, our experiences, fears, challenges, and motivations. As a result of that learning, together we have advanced dementia research, practice, and policy, and also developed strong genuine friendships and support networks between us to empower and motivate us to continue to harness our time, skills and expertise to make a difference in dementia research.

We hope this paper is a catalyst for introspection and thought. This paper is also a call for critical collective action for dementia research that is truly collaborative, and relationship based, rather than solely task based. We advocate for a future where the research field further innovates the well-known “person-centred” approach, to include a relational approach to dementia and dementia research. We need to be focused on conducting research that holds people impacted by dementia in connection. The central premise of this relational approach is that to be human is to be a social, relational being (Macdonald, 2018; Macdonald & Mears, 2019). We advocate for this inclusive approach, which also prioritises the needs of the researchers (and others) themselves, and highlights that it is reciprocal interactions that can guarantee efficient collaboration at all steps of development (Boccardi et al., 2022). These interactions hold the key to better science, better care, and improved practice and policy.

We urge you to unite forces, amplify all voices, and embrace a collaborative approach that ensures that research uses the wisdom of our diverse communities to lead to accelerated progress. We ask you to challenge existing paradigms, to ultimately contribute to a more holistic, person-centred, and relational way of conducting dementia research.

By working together in partnership, we hold both hope and determination to fundamentally transform the way we conduct dementia research to make a difference that matters in the lives of millions.