Challenges in co‐produced dementia research: A critical perspective and discussion to inform future directions




There is a move towards meaningful collaboration of people living with dementia in the research process, but these processes are rarely critiqued, with more critical reflection needed.

Current academic structures, frameworks, and funding processes limit meaningful collaboration, particularly in relation to academic language and hierarchies of evidence.

There is a need for an environment that can enable the collaboration that is at the heart of a co‐produced ethos, but creating such an environment of reciprocity in dementia research requires extensive time, resources and emotional support.

It is important to embrace the tensions of the contexts we, as researchers, work within and continue to strive towards learning and growth, and fairer and more equitable ways of working in co‐produced dementia research.



-1 of 9 https://doi.org/10.1002/gps.599820-30 years is in the context of the experience of dementia.People living with dementia (PLWD) experience stigma, from the public as well as healthcare professionals, 15 which can increase social exclusion. 16As such, PLWD have often been excluded from involvement in academic research 17 (e.g., due to assumptions about a lack of capacity [18][19][20] ).Of note, a review from 2015 found that the involvement of those with neurological disorders in health research including lived experience researchers accounted for only 3% of papers found, with the most popular PPI topics focusing on mental health, health of underrepresented groups, and cancer. 21It has also been argued that the COVID-19 pandemic has further exacerbated structural inequalities in relation to research participation, and that those living with long-term health conditions may now face additional exclusions. 22,23Although this is multifaceted, as the increased use of online platforms since the pandemic (e.g., Teams, Zoom) has also opened up opportunities for co-production, such as for those living in rural areas who previously would have faced geographic barriers.
Overall, the burgeoning interest in co-produced methodologies amongst dementia communities is perceived as starting to shift stigma and inequalities, enabling PLWD to actively participate in research as co-researchers and, increasingly, as research leaders. 24WD have been included in identifying and prioritising research questions, research design, and undertaking and managing data analysis, as identified in a scoping review of 20 studies. 2 Many PLWD are also part of an activist movement to push their own projects forwards as research leaders, including co-authoring academic publications.24,25 This move towards meaningful collaboration and leadership has been argued as more authentically related to the lived experiences of PLWD, thereby enhancing the research process.26 Nonetheless, despite the increased interest and use of coproduced approaches in research and the associated celebrated connotations of equity and inclusion, co-production is a somewhat contested concept in dementia research, also holding different meanings for different people.27 Moreover, there is little specific guidance on conducting co-produced dementia research, and this is important as specific challenges in this field have been highlighted, including risk of distress, cognitive complexity of research-related tasks, and the need for modified facilitation.28,29 Much of the literature surrounding the term in dementia research focuses on its ideology as able to directly address the issues that are important to PLWD, rather than being 'about' PLWD.30 It adds the perspective of the 'expert' 3 and produces knowledge that provides a 'holistic understanding of an issue', 31 also expanding the perspectives of the researcher. 1 Ethically, co-produced dementia research aims to empower PLWD to use their agency, knowledge, experience and skills. 1 Taking part in research as a co-researcher may also bring enjoyment and pleasure to PLWD and change attitudes and perceptions of dementia in the wider society, 5,20 as well as bring intellectual stimulation, for example, being described as 'catnip for the brain'.32 Co-production is a type of 'transformative' research framework that seeks to 'transform' top-down hierarchical research structures into equitable and ethical processes of inclusion and empowerment.33 Thus, it has been incredibly important for the research community to be active in putting forward these celebratory narratives about co-produced dementia research to work towards positive change.However, using such an approach is no panacea and will not necessarily lead to equity, 33 and there are associated challenges, risks and limits that are less discussed.34 Oliver et al 31 list the potential costs of co-production, including personal and professional costs, also supported by Hare 35 who notes that PLWD may experience tiredness, financial costs, ill-health and lack of appreciation.
Further, only a small number of studies have considered the impact of co-produced dementia research on the academic researcher, 1 and this has been highlighted as an area that lacks clarity in guidance on co-produced dementia research. 36Kowe et al's 1 systematic literature review shows the significant benefit to the researcher, but also the additional time, effort and emotional burden.Similarly, Oliver et al 31 suggest that researchers can experience 'burnout and stress', 'increased personal conflict', 'reputational damage' and 'increased interpersonal conflict' (p.4).For example, difficult conversations or disagreements in teams may be hard to navigate in co-production where the researcher needs to manage complex group dynamics, exacerbated by the pressures to produce outputs and report to funders in tight timescales. 31These conflicts are also markers of inherent power imbalances, making it challenging to overcome them within the context of (unequal) social structures. 31As Flinders et al 34

write:
Co-production is a risky method of social inquiry.It is time-consuming, ethically complex, emotionally demanding, inherently unstable, vulnerable to external shocks, subject to competing demand and it challenges many disciplinary norms (p.261)However, co-production is rarely critiqued within the context of academic structures and hierarchies.This is important because previous research has highlighted that 'professional power' over the process of co-production limits participatory rights for involvement. 37Further critique is needed to explore the opportunities and challenges of co-production and understand what institutional processes may need to change, thereby working towards improving collaborative processes and ensuring equitable participation.In view of this, it is the aim of this paper to engage critically with the landscape of co-produced dementia research, highlighting and discussing some of the challenges of producing meaningful and equitable dementia research whilst working within academic frameworks and structures.Highlighting these issues invites us to think about the way forward and begin to explore potential solutions and answers.

| THEORETICAL APPROACH: BIOPSYCHOSOCIAL CO-PRODUCTION
The biopsychosocial model demands consideration of biological, psychological and social factors when exploring health, illness and wellness, in contrast to a 'reductionist' biomedical approach. 38,39It 2 of 9 -COMMENTARY has been used to understand the factors that influence unawareness of impairment in dementia through exploring how contextual and psychological factors affect appraisals of functioning, 40 the relationship between pain and dementia, viewing pain as a multidimensional experience including sensory, cognitive, and affective components, 41 and as a tool to guide clinical practice, such as supporting with delivery and evaluation of psychosocial interventions. 42The biopsychosocial model supports with delivering holistic approaches to dementia health and social care, ensuring care sees the person living with dementia as a 'whole person', whereby 'selfhood' is continually evoked and reassured, 43 also building on person-centred practice. 1t, despite the focus on employing a biopsychosocial approach within clinical practice and care, very little research has explored how such an approach could have relevance within co-produced research, despite their clear alignment of values.
In this article, co-production is positioned as research that ensures that those who will use the research are part of the research process from beginning to end, rather than being those on who the research is done. 27This conception acknowledges that it is important to see PLWD as 'whole persons', aligning with a biopsychosocial approach.The discussion draws upon this ethos in its critique of coproduction to lay the foundation for improving equitable research.As authors, we explore our own collaborative processes through the lens of a biopsychosocial model, reflecting on how the social structures in which we work challenge this approach.

| METHODOLOGY AND METHODS
This paper is a reflexive essay, with reflexivity understood here as a process of self-reflection on one's research practices and approaches. 46The essay was constructed out of reflecting on the experiences of three academic researchers striving to make coproduction core to dementia research (FG, KW, RA), the experience of a person living with dementia involved in research (MR), and the experience of a facilitator of a group of PLWD who are interested in research called the ECREDibles (PB), of which MR is a part.The ECREDibles are a group of PLWD who share an interest in research and was formed in collaboration with ECRED (the Edinburgh Centre for Research on the Experience of Dementia) and some of the UK wide peer-to-peer groups in the DEEP network (www.dementiavoices.org.uk).Whilst they work closely with ECRED, they are an independent group who also work with other universities.They are both a peer-to-peer group supporting one another, and a 'go-to' group for researchers to find collaborators for co-produced research projects.All of the authors have been involved in co-production with PLWD (visit ed.ac.uk/ecred to see example projects), and MR is a member of a range of co-production groups across the UK.
Recognising that knowledge is constructed through individual and relational experiences, 46 the practice of reflexivity was core to our approach.We discussed our different life-stories regarding how we became involved in dementia research and how these stories reflected our values and motivations.We also shared key moments that we felt reflected the challenges that co-production poses, exploring the personal, interpersonal, and institutional components of our experiences. 46This process aligned with a form of collective autoethnography (CAE) whereby researchers study their personal experiences in the company of others, 'pooling their stories to find some commonalities and differences and then wrestling with these stories to discover the meanings of the stories in relation to their socio-cultural contexts' (p.17). 47e discussion of the paper stems from a series of five recorded meetings that took place on Zoom, each lasting approximately 1hour, and associated written reflections.Notes taken in the meetings were recorded using a shared Google document that all authors could access and edit.Following each meeting, the notes were organised by KW and FG into thematic areas that foregrounded the discussion of future meetings.After three meetings, KW reorganised the themes into a suggested structure for this article which was then discussed and refined in the final two team meetings.
The language of 'we' in this article refers to us as a team of five authors.

| THE SOCIAL CONTEXT OF CO-PRODUCED DEMENTIA RESEARCH
Academic structures and frameworks are not always sympathetic to a person-centred and biopsychosocial approach to PLWD as researchers, and it is not always easy or possible to produce meaningful and equitable co-research.People living with dementia involved in co-production sometimes question 'on whose terms are we working?', 5 and academic researchers find themselves questioning whether they are able to carry out meaningful co-production at every stage of the research process within academic structures and restraints.
Reflecting on our own experience as an example: we have been subject to stating that a project will be co-produced at every stage of development, but unable to include those with lived experience in developing funding applications due to quick deadlines and university systems that create logistical challenges with paying PLWD for their time.The reality is that we often only involve those with lived experience once funding is secured.Using the language of 'co-production' is important as it sets out an equitable discourse underpinned by principles that strive for positive change-we need to be able to dream of a more equal and equitable future.However, the increasing value given to co-production as a core part of making research equitable is also enabling what has in recent years been described as 'faux-production', a term used to call out co-produced research that fails to work in meaningful ways with those with lived experience.In the context of dementia research, stigmatising narratives of those with dementia as being 'unable to fully participate' as researchers is also prevalent, meaning that those with lived experience are only included in certain aspects of research that are deemed 'more accessible' (e.g., idea generation and data collection, rather than analysis and write-up). 2ore needs to be done to empower those living with dementia to be research leaders, rather than only involving those with lived experience in certain parts of the process, and yet academic systems and procedures are not set up to enable this.For example, we have found it challenging to share financial responsibilities (e.g., involvement in budget creation and management) with lived experience researchers, as the academic system only allows those contracted to a university to be Principal Investigators and, therefore, budget holders.We listen to and agree with the voices of people with lived experience that change is needed however, often feel powerless to create internal change within the university system.This is exacerbated by many research staff being on short-term, precarious contacts.These challenges exist in the context of rapidly changing, unequal, socio-political contexts too (e.g., our time of 'permacrisis' and extended periods of insecurity and instability 48 ).As a result of this unstable environment and economic uncertainty, universities (and indeed other institutions partnering with universities) are experiencing increased pressure to attain funding and to attain it quickly, with workloads of academics increasing to a level not seen before.Health and social care professionals are experiencing unprecedented workloads in the context of major systemic issues, creating a challenging landscape in which to create research partnerships between academic and public health institutions that are conductive to co-production.Doing co-produced dementia research meaningfully requires extra time and resource and, at present, core funding is lacking.From our own experience, unless there is project funding available for a specific research project, we cannot include those with lived experience in broader academic activities such as attending conferences or workshopping future ideas because there is no money to facilitate such engagement.In this sense, we are reproducing the inequalities at the heart of the university system on an individual level (i.e., not including those with lived experience when we would like to) because we come up against barriers to making change (financial and systemic) that, simply, there is little time or energy to fight.Suggesting this is a 'fight' may seem unhelpful as it presents an 'us' (individuals) and 'them' (systems) narrative, rather than a landscape of complex feelings and contradictions but we feel, more often than not, we are fighting and are in need of immediate structural support.
Many of these pressures and challenges exist in co-production and university systems at large, but are exacerbated in the context of dementia research. 49Dementia is multifaceted and affects those with a diagnosis differently, both cognitively and psychosocially.
People have very specific needs, and there is no way to 'standardise' an offering of support from the university for research participation.
To participate in co-research with PLWD demands an individualised approach, finding ways to create safe and supportive spaces where people are empowered to be part of the research process, also drawing upon a range of different communication styles (e.g., visual, creative or audio methods, sending out hard copies of documents for those who find it easier to read and digest information).In many cases, the academic researcher will need to be 'on hand' to ensure quick communication and feedback too.Maintaining ongoing human connection is important to quality research and this can be a challenge when many working in academia are balancing different priorities (e.g., multiple projects, teaching, funding applications, knowledge-exchange etc.).Further, there is still a huge amount of stigma surrounding the inclusion of those with dementia as coresearchers which may limit the aspects of academic research that those with dementia can access.

| VALUING CO-PRODUCED RESEARCH
The social structures surrounding co-production also have implications for the kinds of research given value.This is particularly in relation to the kinds of epistemological perspectives and methodologies that are prioritised in research.As noted by Mauthner & Doucet, 46 ways of conducting research are not 'neutral' and they come with epistemological, ontological and theoretical assumptions.
In the case of research in public health, there is a dominance of research that prioritises positivist research within a socio-political landscape of valuing generalizable findings and replicable studies, and this creates specific challenges for co-production.
Explaining further, although co-production is not tied to a methodological approach (i.e., it can be quantitative, qualitative, multi-strategy), a popular methodology employed is qualitative.One reason for this may be epistemological.Quantitative methodologies tend to be tied to positivist ways of viewing knowledge, whereby the endeavour is in some way to 'capture' objective knowledge.Such an epistemological approach aligns well with the medical hierarchy of evidence, whereby systematic reviews (e.g., the 'gold standard' of the Cochrane Library) and Randomised Controlled Trials are viewed as the bedrock of evidence-based medicine, led by quantitative data.
Such studies also tend to employ a top-down research approach whereby academics within an academic or public health institutional structure lead the research, rather than working in partnership with participants (although not always, and studies often include PPI).This 'gold standard' is recognised by institutions such as NICE (National Institute of Clinical Excellence) and SIGN (Scottish Intercollegiate Guidelines Network), meaning that such an approach is prioritised within policy and health and social care evidence-based delivery.Our lived experience researchers have expressed finding this a challenging landscape that has led to feelings of exclusion as a result of an emphasis on 'numbers-based' research, whereby subjective lived experiences are not prioritised.As qualitative research tends to be tied to constructionist or interpretivist approaches that do allow for subjectivities and lived experiences to have value, this may have led to the alignment of co-production and qualitative approaches.It is possible for qualitative approaches to marginalise PLWD (e.g., overlooking lived experience voices through imposing pre-existing notions onto data), but they tend to fit well with 'transformative' paradigms that seek to make social change. 33timately, top-down approaches-whether quantitative or qualitative-may marginalise PLWD, yet often it is these approaches that are given the greatest value in our society.It is important for

| RESEARCH LANGUAGE
Language commonly used in academic research may marginalise lived experience researchers, hence lay-language documents are often created alongside academic-language publications, which can take extra time.This in itself highlights the power imbalance that exists between the academic and lived experience world, reinforcing a 'them and us' dynamic.Whilst it is not possible to create a document that is accessible for everyone as every person has different needs, it is important to ensure that academic publications are as inclusive as possible, with topic-specific terminology explained in an accessible way.In so doing, there would be a much wider scope for impact of scientific findings and a breaking down of the 'us and them' dynamic between academia and the public, also enhancing clinical ethics and health literacy. 50One of our co-authors noted that some terms may be off putting for someone living with dementia trying to understand research papers including 'quantitative versus qualitative data' and 'dyads'.In the extreme, high levels of jargon and obscuring of meaning has been associated with a more fraudulent reporting of research. 51As we work to reshape the systems that limit the sustainability of co-producing research, we will need to address the hierarchy of language.
The label of 'researcher' in itself is also worth reflecting on.Many everyday actions come from a certain level of researching.Whether that's the best place to buy something, our favourite food or drink, what activities we are best suited to etc.The Internet has further expanded the ease in which we can find answers to questions and our ability to do research (e.g., Google Scholar).It is easier than ever to engage in research processes and to bring in our own lived experiences to those processes.Co-production has looked to position people with lived experience as researchers which is important to ensure everyone involved feels equally valued in the research process.This is not to say that there is an 'equity in skills or ownership' but rather 'equal respect, voice, and access to shared resources' where everyone can 'work together productively as a team'. 8

| CREATING AN ENVIRONMENT OF MUTUAL SUPPORT
There is a need for an environment that can enable the collaboration that is at the heart of a co-produced ethos.An important part of this collaboration is an emphasis on ensuring everyone involved can be heard, whereby reciprocity is a core value. 52Within mental health research a similar theorisation has been expressed through the relational construct of 'mutual recovery', emphasising that mental health recovery involves a diverse range of actors (those with and without mental health problems) to build resilient communities. 53In the context of dementia, the word 'recovery' is not appropriate due to the chronic and progressive nature of the disease.Nevertheless, PLWD also experience a range of psychosocial challenges, whereby mutual engagement in research as co-researchers has improved wellbeing and quality of life.These benefits are seen amongst researchers with and without dementia engaging in the research process, whereby the reciprocal nature of co-production creates an environment of mutual support.We theorise this as an environment of rapport-building that is 'more human' than traditional approaches.
Similar to the construct of 'mutual recovery', this is a social and relational understanding of how and why co-production is of value to the lives of those with and without dementia: the cocreation of a meaningful community.
Creating such an environment of reciprocity requires extensive time, resources and emotional support.There are clear challenges here in relation to financial resources and time, but there is also a further challenge of peer support.Our ECREDibles project is an example: This is a new model of co-produced dementia research, whereby we engage in long-standing relationships with PLWD across a range of co-produced research, as opposed to working on a projectby-project, short-term basis which is commonplace in academia.Our lived experience co-author (MR) has shared that he and his neurologist feel that his involvement in this group and other co-produced projects that involve longer-term relationship building, has meant that his dementia is deteriorating slower than expected.However, this creates a need for long-term peer-to-peer and emotional support, whereby the demand on all those involved can be high.One of the authors of this article (PB) is the facilitator of this ECREDibles community, engaging in many hours of voluntary peer support for the group and going well beyond the contracted hours for the role that was originally funded through a grant that ended in July 2022.Ultimately, the challenge here is ensuring that there is enough emotional and financial resource for someone within a co-produced community to be supported and paid to ensure the ongoing care and wellbeing of those within the community.This is something that facilitators and academics are currently including within their roles in a voluntary capacity, but research communities could be strengthened if additional peer support roles could be funded.
When engaging with concepts such as 'mutuality', 'reciprocity' and 'relationality', a clear question emerges in relation to whether or not those involved in research should all be contributing equally.
Definitions of co-production naturally fall on the language of 'equal partnerships', 54,55 but we believe it's also important to add more nuance to our understanding of collaboration, particularly when working with PLWD.Everyone has different needs, motivations and capabilities, meaning that it may not be the case that a lived experience researcher wants or needs to collaborate on every stage of research.What is more important is ensuring that everyone can take part in the elements they choose to be included in, and that necessary support and training is provided for any elements that may require this for meaningful participation.Indeed, when conducting research without those with lived experience, it is often the case that different members of the team will take on different roles with varying levels of responsibility.There may be problematic hierarchical reasons for this, but team structures may also vary depending on the skills and interests of the researchers.Valuing PLWD involves taking a person-centred approach that recognises individual experiences and motivations: this is a spectrum of participation, whereby opportunities to engage peripherally through to research leadership need to be available.
There are also controversies around whether you need to pay those with lived experience and how much to pay.We advocate for paying PLWD for their time to recognise that they are experts by experience that bring value to research, creating a space of mutual respect and reciprocity.Nonetheless, whilst ideologically we believe in the value and importance of payment, this can also change the dynamics of a partnership.For example, a voluntary engagement may put less pressure on someone to be involved, versus a sense of 'having to'.In this sense, it is important to ensure that no one feels coerced to be involved either.Moreover, funds are often not available to pay people with lived experience.In view of the funding challenges faced by universities, we ask: is it better to include someone with lived experience without paying them than not include them at all?This is not an easy question to answer, and the answer will vary on circumstance and individual preference.Our experience is that some people do not mind participating voluntarily and that the experience of being involved in research brings value.We also feel that choosing not to include those with lived experience due to resource and funding pressures could work against the ethos of co-production because it places the power of decision-making with those in academic institutions.In this sense, the question should be posed to those with dementia to make a choice on whether or not to participate, rather than academics making this choice on their behalf.Yet, sociologically, this isn't clear-cut either because it creates the conditions that exacerbate pre-existing inequalities by allowing those with lived experience to continue to be placed in a position of marginalisation.We recognise that many of the PLWD we collaborate with are retired or have financial security and that many people without such support may not come forward without a financial incentive-it is important that opportunities to engage are available to all.Thus, even if those with lived experience are 'happy not to be paid', the bigger picture of the hierarchy of academia and our view that we need to work towards changing structural inequalities, leads us to conclude that we should try, wherever possible, to pay those with lived experience for their time.This acts as a symbol of the equality we strive for, in addition to breaking down barriers of access relating to financial support and time commitments.

| COMPLEX ETHICAL AND MORAL CONSIDERATIONS
Formal university ethical approvals for research bring about complex challenges.Firstly, PLWD have voiced that the 'blanket restrictions' of conventional ethical governance may unnecessarily exclude those with dementia because 'not all people with dementia are the same'. 24rther, co-production requires being responsive to those with lived experience and making changes to a research design which can be problematic if formal ethical amendments are needed and there is little time.There's also the question of whether formal ethical approval is required for a co-production group that is not attached to a research project, or for discussions about developing future projects.At present, the inclusion of co-researchers wouldn't necessarily require ethical approval in and of itself because they would be part of the research team, and likely involved before an ethics application process (if it's even required for a particular research project).
However, there may be safeguarding issues that occur through these collaborative processes where, without formal ethical processes where procedures have been outlined, courses of action and responsibilities are not clear.For example, we have experienced coresearchers living with dementia showing signs of psychological distress due to wider life experiences.In these cases, we have recommended mental health support services.Yet, it has been unclear regarding the role of the university in protecting co-researchers from harm when they are not formal members of staff, nor are they 'participants' that have signed consent forms that outline procedures and practices.If we are to embed ongoing co-production with PLWD into university systems at large, there's a clear need for ethics committees to know when and where formal approval is needed, and when more informal ethical practice is suitable.
Another difficult question to ask is: How can one know when coproduction may be harmful to someone living with dementia?Having dementia is a constantly changing experience, whereby communication may (or may not) be challenging.One of our authors (MR) has described having 'foggy days' where it can be harder to engage in coproduction than on other days.This creates an environment where it is important to continually check-in on whether or not being part of co-production is still appropriate.It is of utmost importance to always place the welfare and wellbeing of PLWD at the heart of research.
There are also ethical challenges in relation to who to include.
We have tried to engage a diverse range of voices in our research, but we are aware that our projects lack representation.We have a predominantly white group of people participating in our research and we know that it is important to work with more people from ethnic minority communities.Recruitment of co-researchers can be a major challenge when engaging in co-produced research and the question is whether or not to work with those who are eager and come forward first, or to put in more time and resource to ensure a broader spectrum of voices.This decision is often made due to logistical considerations, but we also know that this means many who could benefit from the process do not.Further, including those with more advanced dementia poses complex ethical challenges in relation to how to include those who may be non-verbal or in health or care settings without the resources that may be required to engage (e.g., transport, Internet).Those in academia also face complex moral challenges that may not come into formal ethical considerations, but whereby difficult decisions need to be made on an individual or departmental level.
One key example of this is when someone from academia disagrees with a suggestion made by a lived experience researcher (e.g., a suggestion on a direction a research project could take).How best to navigate this when the academic is often in a position of greater power is complex.Simply, decisions should not be made based solely on one person's views and hopefully a collaborative approach mitigates this situation.But the reality is that there are many decisions made every day by researchers in academic institutions, and that every person with dementia has different experiences and it can be hard to account for every view.There's a balancing act in recognising when those in academia have knowledge of 'the system' in order to 'make research happen' and when to draw upon this knowledge, recognising that this system is also one founded upon many years of marginalising those with lived experience.Knowing when an academic should push against the system and when to work with it is a challenge.

| CONCLUSION
There's limited critical reflection on the processes of co-produced dementia research in view of academic structures and the potential challenges that these structures bring.This paper has sought to explore some challenges that are experienced by a team working collaboratively in dementia research in the hope that it will inspire other researchers to critique their processes and work to make positive change.Through our reflections, we provide novel insights in co-production relating to the limitations of academic and funding structures, the informal and relational ethical practices required, and the complex and varying team structures that could form, recognising and prioritising how those with lived experience would like to contribute, building on their own needs and strengths.Acknowledging the restraints of the research landscape alongside exploring the importance of valuing co-production and constructing relational environments of mutual support, we embrace the tensions of the contexts we work within and continue to strive towards learning and growth, and fairer and more equitable ways of working in coproduced dementia research.

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COMMENTARYresearchers to be active in highlighting the value of different kinds of data and different ways of knowing, working in collaboration with PLWD to identify what ways of knowing are important.