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Abstract

In recent years, there has been a growing focus on incorporating the perspectives and experiences of people with dementia in research. However, collaborative research that engages with their everyday lives remains limited, and there is little reflection on this research approach. Our research project on everyday life with dementia was conducted in the Netherlands by a team comprising academic researchers and co-researchers with dementia. The co-researcher group of six people with dementia called themselves Brain Power. The group was the first of its kind in the Netherlands. This study aims to reflect on the processes that underpinned the collaborative research over a three-and-a-half-year period. To identify significant elements in the collaboration, individual reflections were collected from Brain Power members and academic researchers, and three joint group reflection meetings were obtained. A reflexive thematic analysis of the data identified four main themes: (1) Forging a group identity; (2) Learning together as a driving force of co-creation; (3) Sharing experiences to transform perceptions of dementia; and (4) Carrying on our work together. These themes are illustrated using descriptions of the ways of working and reflections on the process. The results indicate that long-term collaborative research with people with dementia is feasible and adds a deeper level of understanding and authenticity to the outputs. Working collaboratively on a research project requires specific skills from both academic researchers and co-researchers with dementia.

Keywords

collaborative research dementia citizenship lived experience participatory research

Introduction

Engaging in collaborative research with people with dementia necessitates a fundamental shift in traditional approaches to dementia research (Swarbrick et al., 2019). Historically, people with dementia have been largely marginalised and excluded, meaning that research is often conducted ‘on’ rather than ‘with’ them (Dupuis & Gillies, 2014). However, a growing body of literature emphasises the importance of including the authentic experiences and insights of people with dementia, shifting the research paradigm to one of collaboration and co-creation of knowledge (Dupuis et al., 2021; Groothuijse et al., 2024; Hung et al., 2025; Litherland et al., 2018; Roberts et al., 2023; Swarbrick et al., 2019). Collaboration with people with dementia contributes to a deeper understanding of their lived experiences (Goodman et al., 2013; Kowe et al., 2022) and their active involvement is essential for developing interventions and practices that genuinely meet their needs in everyday life (Collins et al., 2023; Haapala et al., 2018; Huizenga et al., 2023; Love & Femia, 2015).

Different forms of involvement of people with dementia are known in dementia research, such as advisory groups, action groups, and mixed research teams (Groothuijse et al., 2024). Such forms of active involvement align with critical social perspectives in research on dementia (Bartlett & Lid, 2025; Collins & Fletcher, 2024), including an emphasis on human rights (Cahill, 2020) and social citizenship (Bartlett & O’Connor, 2007). Bartlett and O'Connor encourage a critical re-evaluation of our conceptualization of evidence, research priorities, research contexts, and the use of research findings. They argue for prioritising the perspectives of people with dementia, using participatory research approaches that actively involve them in creating new knowledge. This approach aligns with a horizontal epistemology (Abma, 2020), where academic knowledge, practical expertise, lived experience, and artistic knowledge are equally valued and complement each other to provide multifaceted understandings of the world.

Some academic researchers in dementia studies have made strides in this area by using participatory research approaches to enable meaningful collaboration and co-creation of knowledge with people with dementia (Davies et al., 2021; Mann & Hung, 2019; Roberts et al., 2023; Watson et al., 2023). A key challenge within participatory research is the practical realisation of participation and collaboration, as well as the different ways in which different approaches define and shape participant involvement in the research process (Chevalier & Buckles, 2019). Within this landscape, co-production has emerged as an approach that seeks to move beyond participation as involvement, towards shared ownership and decision-making as equal partners throughout the research process (Davies, Sampson, et al., 2021; Griffiths et al., 2024). The limited existing research highlights both the benefits and challenges. Collaborating with people with dementia can broaden academic researchers’ perspectives, enhancing the relevance and quality of the research (Kowe et al., 2022). A strong relationship between academic researchers and co-researchers is essential for collaborative work (Mann & Hung, 2019) and this collaboration provides opportunities to confront stigma and negative stereotypes (Rivett, 2017). The challenges include the additional time and effort required to conduct participatory and co-production research (Kowe et al., 2022), finding methods that appropriately include people with different ages, cultural backgrounds, and with varying forms and stages of dementia (Smith & Phillipson, 2021), and involving people with dementia in all stages of the research process (Niner et al., 2023).

However, less is known about which skills are required of academic researchers when working with a group of co-researchers with dementia. Arguably, it is important to reflect on the process of doing collaborative research with people with dementia, as such reflections can provide guidance to the field and thereby enhance the inclusivity and impact of the research. This study therefore aims to reflect on the processes that underpinned the long-term involvement of a co-researcher group of people with dementia in the Netherlands, and a group of academic researchers that worked together to conduct a collaborative research project on everyday life.

Methods

Study Design

Data were drawn from a three-and-a-half year collaborative research project led by the first author (JH) between November 2021 and May 2025. The collaborative research was part of her PhD project, which examined the everyday lives of people living with dementia, their family carers, and the support of professionals.

The research project was conducted with a group of people with dementia, called Brain Power. Richard, a member of the group, introduces the group:

We are Brain Power, a group of people living with dementia. We actively participate in the research. So, we are not listeners or advisors. We modify things. We also engage in discussions about that together. The research is done with us.

Recruitment

From June to October 2021, the main researcher (JH) worked on initiating a group of people with dementia to meet at HU University of Applied Sciences Utrecht to be connected to the study. People diagnosed with dementia or mild cognitive impairment (MCI) who were interested in research were invited to participate. MCI is defined as an objectively determined cognitive impairment that does not meet the criteria for dementia and is considered a pre-dementia stage (Petersen et al., 2009). A flyer was designed based on communication guidelines from the Dementia Enquirers, a group of people with dementia conducting research in the United Kingdom (Innovations in Dementia, 2023). This flyer was distributed among professionals, students, and organizations in the regional network, and shared on social media. During this period, the main researcher also attended a masterclass on participatory research led by the Dementia Enquirers.

Participants

The group of people with dementia started in November 2021 with four members and quickly grew to seven. They lived in the central part of the Netherlands. As shown in Table 1, the group consisted of two women and five men, aged 57 to 72, with diverse educational and occupational backgrounds. Two members lived alone, while five had partners, including two with a migration background. The group included people diagnosed with Alzheimer’s disease, Alzheimer’s disease with suspected chronic traumatic encephalopathy (CTE), vascular dementia, Parkinson’s dementia, and MCI.

Table 1.

Characteristics of the Group Members

Name	Age	Educational level	Former occupation	Partner	Country of origin	Diagnosis	Years since diagnosis	Years of membership
Edwin	57	Vocational education	Data analyst	Yes	Netherlands	Alzheimer	4	3.5
Mike	61	Bachelor	Physiotherapist	Yes	Netherlands	Alzheimer with a suspected chronic traumatic encephalopathy (CTE)	3	3.5
Richard	62	Vocational education	Head security	Yes	Netherlands	Parkinson dementia	6.5	3.5
Anita	58	Vocational education	Administrative assistant	Yes	Netherlands	Alzheimer	4	3.5
Wim	72	Bachelor	Director	Yes	Netherlands	Alzheimer	9	0.5
Gerda	68	Academic	Accountant	No	Belgium	Vascular cognitive impairment	8	3.5
Frank	65	Bachelor	Registrar	No	Netherlands	Mild cognitive impairment	2.5	3.5

The time since diagnosis varied from a few months to six and a half years. For some members, this was their first time exchanging experiences with other people with dementia, while others were already sharing their experiences publicly. When the group reached seven participants we decided not to actively recruit new members, in order to maintain a manageable group size and ensure meaningful participation for all. One member left after four meetings due to the demands of attending more intensive daycare, and another withdrew after 20 meetings because of increasing fatigue caused by the progression of dementia. The group met monthly for two-hour sessions at the university, from November 2021 to May 2025, totalling 22 meetings. They received financial compensation from the university for their work, along with reimbursement for travel expenses.

The group was led by the first author (JH), who acted as the main researcher and facilitator. She is a psychologist with clinical experience and expertise in working with groups as a lecturer in Social Work. She also brought personal experience with dementia, as her father had dementia, and her mother was diagnosed during the research. As a fellow academic researcher, the second author (HT), took on the role of facilitator. She is a scholar of religion and has extensive experience in working with groups as a lecturer in Social Work. She also brought personal experience, with a mother with dementia and a close friend who was diagnosed with dementia during the research period.

The first year focused on getting to know each other and conducting a qualitative study exploring what matters most for people with dementia. In the second year, the emphasis shifted to translating the research findings into a book titled “Hoe leef ik met dementie?”, translated as “How do I live with dementia?” (Huizenga et al., 2024). In the third year, the focus expanded to wider dissemination and public engagement. A new study was initiated, involving Brain Power in all phases of the research process, including study design, data collection, and analysis. The aim of that study was to reframe professional care together with dementia case managers from the lens of everyday life. In the final phase of the project, the future of Brain Power was discussed.

In this paper, we use the following terms: (1) Brain Power, a co-researcher group with people with dementia, referred to as ‘members’ and ‘group’; (2) the academic researchers who facilitate Brain Power, referred to as ‘facilitators’ (JH and HT); (3) explicit reference to the ‘main researcher’, when necessary (JH); (4) together they form the ‘research team’.

Data Collection

To reflect retrospectively on the collaborative process in the three-and-a-half-year period, three reflection meetings were held with the research team between February and April 2025. In preparation, the main researcher provided written questions to the research team to evoke reflection on each person’s experiences, thoughts, and feelings about working together (see Supplemental Material, Appendix A).

The aim of the reflection meetings was to identify, discuss, and collect meaningful moments in the collaborative research process as conducted. Meaningful moments, or critical moments, are emotionally laden moments in the research process, following Nussbaum’s (2001) notion that emotions are ‘values embodied’. To improve resonance with everyday language, we found a more accessible metaphor. In the first research team meeting, all were asked to share “lightning” moments from their years with Brain Power: important events, both positive and negative, that stood out to each one. The research team described moments that they felt were impactful, either as specific events or more broadly what had been meaningful to them. They engaged in a conversation, in an informal style.

The reflection meetings, as well as all previous meetings with Brain Power, were audio-recorded and transcribed verbatim.

Data Analysis

Reflexive thematic analysis was performed to analyse the data (Braun & Clarke, 2022), which aligns with our participatory and interpretive approach, allowing for researcher subjectivity and iterative theme development. We followed the six phases of reflexive thematic analysis: familiarisation with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the report. The first, second, and last author (JH, HT, SRB) independently conducted manual open coding of the transcript from the first group reflection meeting. They discussed their coding and formed initial ideas for themes. The preliminary themes were discussed with the members of Brain Power in the second and third reflection meeting, using a reflective dialogue to ensure the findings resonated with their experiences and to deepen the collective reflections. The first author used the transcripts of these meetings to further refine themes and regularly discussed the process with the second and last author. The final themes were developed through an iterative process of discussing the manual coding and re-reading the transcripts.

The primary data source consisted of retrospective reflections shared during dedicated group reflection meetings. However, because these reflections were deeply embedded in the collaborative process, we also drew on examples and observations from reports of earlier meetings to contextualise and enrich the themes. This combination enabled us to develop a thick description of the co-research experience, capturing not only what participants said about working together, but also how the collaboration unfolded over time.

The group members of Brain Power were involved as co-authors on this paper, reflecting their active role throughout the research process.

Ethical Considerations

The study adhered to The Dementia Enquirers Gold Standards for Ethical Research (Innovations in Dementia, 2023a). All participants provided informed consent for participation and data use. Each potential participant had a personal meeting with the main researcher to discuss the study’s goals, risks, benefits, and the voluntary nature of participation. A process consent approach was used (Dewing, 2007), with regular reminders of the research aim at the start of meetings and allowing participants to withdraw at any time or pause when fatigued. The research was approved by the Research Ethics Committee of HU University of Applied Sciences Utrecht (reference number 2022-5). The long-term collaboration fostered a relationship of mutual trust and reciprocity between facilitators and co-researchers, which was essential for ethical engagement and meaningful participation. Co-researchers expressed a clear preference to be referred to by their first names in the publication, reflecting their wish to be recognised as individuals and contributors. This preference was respected and is aligned with their role as co-authors of this article.

Findings

The reflective process resulted in the formulation of four (distinct but interrelated) themes: (1) Forging a group identity; (2) Learning together as a driving force of co-creation; (3) Sharing experiences to transform perceptions of dementia; and (4) Carrying on our work together.

Theme 1. Forging a Group Identity

Members valued the group Brain Power as a means of establishing a collective identity. They spoke of how the group gave each person a sense of purpose and belonging, of being part of something that was “ours”. As Gerda expressed:

We do this together. Yes, don’t stop. Yes, don’t give up. We are together. And we finish as one.

Members felt a strong connection with each other from the start, united by their shared experiences of living with dementia. For some, this was the first time to openly discuss their struggles with others in a group. Retrospectively, members noted that the facilitators fostered an environment that empowered them to feel respected and heard, providing a safe space to speak. Their reflections highlighted how various elements contributed to this safe environment, crucial for forging a group identity.

Firstly, before entering the group as a member, the members had a personal meeting with the main researcher beforehand to get to know each other and to exchange expectations. Secondly, before every meeting, the facilitators welcomed the members with attention: they waited for them at the door, provided drinks with cookies and placed a name card on the table for each member. Thirdly, the group was framed as a working group with a clear structure for the meetings, including an agenda, a report of the former meeting, and a visual map of the research provided by the facilitators. All documents were designed to be accessible, using plain language and Sans Serif size 14 fonts, as recommended in the guideline “How to write and produce better information for people with dementia” (Innovations in Dementia, 2023b). Fourthly, from the beginning, the main researcher explicitly stated that this was a special group to her and expressed her desire to work together in the research.

Members also felt that the group was special, as they understood it to be the first of its kind in the Netherlands. They felt motivated to be part of it. This was further reinforced by inviting the group to invent their own name. They settled on “Brain Power” with the following rationale:

1. Power is needed when reinventing your life after a dementia diagnosis. Sometimes against all odds.

2. Our power is often not taken seriously by others, and no one asks how we feel. We want our strengths to be recognised.

3. We want to shape the future with our Brain Power to inspire others and initiate positive changes.

The group dynamic fostered mutual support and camaraderie, where members could relate to each other’s experiences. It was important for the facilitators to seek ways to support this. At the beginning of the meetings, they did a round in which each member could share something. Some shared how they were doing, while others used this moment to share updates about their activities related to dementia. Over time, the members sometimes called each other “colleagues”.

Giving members space to openly discuss and reflect on their experiences was not without difficulties. As the group progressed, the facilitators and group members noticed that some members were more talkative, while others remained more silent. Furthermore, the group discussions sometimes went off-topic as members expressed strong, conflicting opinions, for example about politics. The facilitators asked the advice of one of the members of Dementia Enquirers and, as a result, introduced group agreements (see Box 1).

• We take turns speaking.

• We give each other time to share.

• We do not speak about each other.

• We respect each other’s opinions.

• We have fun.

Box 1. Group agreements

These group agreements were established collaboratively, and each meeting opened with a brief reminder of them. Displaying group agreements on the table was a material expression and ritual of the group’s collaboration. Reflecting, members noted that the introduction of group agreements helped members to be more aware of speaking boundaries and taking turns. As Edwin explained:

If we don’t do that, I keep on talking.

Another way to address the need for turn-taking, inspired by the Dementia Enquirers, was using a yellow card saying “I want to speak please,” which members could hold up to indicate they wanted to contribute. This was helpful because memory problems can make it difficult to wait and still recall what one wants to say. When the group had been working for a while, the facilitators experimented with approaches to help regulate discussions, such as setting boundaries on speaking time and introducing a talking circle where members took turns speaking without interruption. This led to a more balanced participation within the group. As a result, members valued the importance of listening to each other and recognised that different perspectives and backgrounds enriched the group. As Mike put it:

We are different. We all have different brains, in different ways. And it’s essential that we can express that freely. In the Netherlands, we have the freedom to do that. In the group, it works well. The strength comes from the group.

In their reflections, members described how humour and laughter played a role in strengthening the group identity, as they created a sense of connection and shared experiences. Members frequently made light-hearted jokes about forgetting. As illustrated in one of the meetings:

Two members had not done their preparatory work. They exchanged a look of recognition with a big smile at each other.

Gerda: “Forgot homework. [with a laugh] Too bad, right? You see? That's such a typical problem. I think: I have to do something and then I completely forget about it and then we come here and I think: oh shoot, forgot homework.”

Richard: “You can get away with that now, but it didn't work at school.”

Gerda: “Then you have to stand in the corner.” [group laughs]

Members recalled that the use of WhatsApp, specifically a group chat, was also a way to forge group identity. This accessible communication tool, proposed by one of the members, helped strengthen the group’s relationships. Members shared updates about their activities and connected with one another through text, pictures, GIFs and audio. Pictures and audio could be easier to process for people with dementia. Additionally, WhatsApp was used to remind everyone of upcoming meetings and research-related updates. However, a few members preferred contact by phone or through a family carer, and the facilitators accommodated everyone’s needs.

Members identified the temporary absence of the main researcher as a critical moment in their reflections, one that further strengthened the group’s identity. This absence was due to illness, partly related to caring for her mother with dementia and her mother’s passing away. The other facilitator stepped forward to lead the group, allowing the group to continue its work. At the same time there was a deep sense within the group of wanting to help the main researcher. As Edwin recalled in his reflection:

We wanted to pull you past it.

The group felt empathy for her, bonding further as they navigated this period collectively. Being sensitive to the group’s needs and including the group members in the process of recovery, providing updates, was important. The group rallied behind her, sensing her difficulty in continuing the work and encouraging her to persevere. This deepened their shared sense of supporting one another. In her own reflections, the main researcher described how the group’s perspective was valuable during her recovery and served as a source of reconnection. The focus on reciprocity and mutuality enabled the collaborative process to continue. Mutual support became a core strength of the group. When a member of Brain Power emotionally shared how poorly she had felt in recent weeks, other members responded with supportive comments like “Aw, sweetheart” and “Embrace it”.

Through shared experiences, open communication, and a strong sense of belonging, members found a platform for their voices and forged lasting connections that went beyond the group’s original purpose. Basically, the collaborative task of researching served as a driving force for the group’s identity, complementing the social connections formed.

Theme 2. Learning Together as a Driving Force of Co-creation

Reflections from both members and facilitators show that the collaborative nature of the research project developed over time. Crucial to this was the facilitators’ commitment to an iterative and responsive approach, requiring flexibility and openness to embrace a process of learning for both members and facilitators. Members appreciated the opportunity to learn new skills. The main researcher reflected that being open to learning herself was critical to a collaborative dynamic, which brought together the members’ lived expertise and her academic expertise.

Jacoba: “I found that by truly listening to the group members, I often realised that ideas I had initially conceived needed to be adjusted or even completely changed. This was part of my learning journey as a PhD candidate. These experiences were exciting to me as I fundamentally wanted to integrate the voices of the members.”

Richard added: “I think the empathy you two have also comes from your own experiences, and that’s really important for understanding us. It already removes a barrier, because you know, you already know what kind of impact this has.”

The most crucial learning process lay in developing diverse ways for Brain Power members to contribute meaningfully to the research. Initially, members were invited to form a sounding board to provide feedback on the research. They felt motivated to help and saw their role as advisors. The main researcher reflected that this way of working was unidirectional and sought ways to create a more collaborative partnership to learn together. As a next step, she looked for ways to involve members in the analysis and interpretation of the data of one of the studies. This was done in two ways. Firstly, by providing specific questions that emerged from the data analysis for the group to discuss and reflect on, such as the finding that many interviewees had spoken about their past experiences. Drawing on their personal experiences, the group then shared possible reasons for this observation. Secondly, the main researcher presented the emerging findings and asked for their comments. She presented the findings with short keywords and illustrations. Thereafter she asked questions like: “Do you recognise this?” and “Are there things you think you would miss that are also important in daily life?” Finally, all the themes were displayed together in a single comprehensive visual. Anita responded, with tears in her eyes:

This is spot on. This is what we experience.

As the group progressed, there was an increased sense that members were not advisors, but rather took on the role of co-researchers. In the paper describing the qualitative study, they were referred to as co-researchers. After publication, all felt proud in having co-created this knowledge.

In the next phase, the facilitators and members also took on co-creation to develop a book based on the published paper. The development of the book was an iterative learning process, where members, facilitators and an illustrator, worked together on decisions around the content and visuals. For example, they co-designed icons to visually represent the themes. To illustrate this:

Herma (facilitator) and Fija (illustrator) discussed the design of an icon to represent dementia. Fija initially proposed drawing a brain, but Herma felt that such an image might be too confronting or painful for people. Therefore, Fija created a cloud (see Figure 1

Figure 1.

Icon Cloud

.).

As a next step, Herma presented the icon to the group to gather their feedback. However, the group found the meaning of the cloud unclear. As Frank summarised:

“I don’t immediately see the connection to dementia. Dementia is in your brain. So you quickly get something like… it becomes woolly.”

The group preferred an icon with a brain. In response, Fija designed a new icon featuring a brain (see Figure 2.) with the following explanation: “I illustrated the brain icon from a positive approach. The speckles are a sign of confusion, but also of liveliness and positivity. As a person with dementia, you are not your disease; you remain so much more than that.” The group selected this icon, which all members agreed was a significant improvement.

Figure 2.

Icon Brain

Members expressed how meaningful the collaborative process in co-creating the book had been, as they felt their perspectives were reflected in the final product.

The group further developed as co-researcher group in the next phase of the research project, carrying out all elements of the research cycle together with academic researchers. Collaboratively, they formulated research questions and discussed data collection methods with dementia case managers. The group began to take on a more active and participatory role in the entire research process. The facilitators organised meetings between the case managers and Brain Power, where the group co-led by posing questions to guide the discussion. The facilitators and Brain Power members also discussed their responsive approach to the unfolding research process. Upon reflection, they decided to form smaller discussion groups between the case managers and Brain Power members. Assigning a joint task for the Brain Power group and case managers proved also helpful. In the final meeting, all Brain Power members, case managers, and academic researchers, felt that they had learnt from one another. As one case manager expressed:

I found it truly valuable to be able to work on this and to get to know all of you. I have learnt so much from you.

As Brain Power evolved into a group of co-researchers, members expressed a sense of empowerment and a belief that they could contribute more than academic researchers initially expected. As Richard expressed looking back:

The process started as an advisory group. And that's how we all got involved. Eventually, we became co-researchers because, in my opinion, we had more capacity than you might have thought, and we approached each other more equally.

Gerda added: “We became partners.”

Anita: “More involved in doing things ourselves.”

This highlighted the importance of recognising the potential of people with dementia to actively participate in research and make meaningful contributions to the development of knowledge and products. Achieving this required creating a supportive environment in which all participants could learn from one another and share their expertise.

Theme 3. Sharing Experiences to Transform Perceptions of Dementia

Retrospective accounts revealed that, while the focus was on collaborative research, sharing experiences to transform perceptions of dementia also became an important purpose of the group. Members expressed a desire to make their experiences and perspectives heard and to raise public awareness about issues of concern, such as the stigma associated with dementia. As Mike explained:

There are two streams that come together. It is clear to you [main researcher] what you need to do. And we, maybe, can provide input. A second story is, of course, for the rest of humanity.

Anita added: “We have cultivated understanding. We’ve shown what can be improved. And I think that’s really important.”

Gerda illustrated: “On the Antilles, when I handed that book to the entire government, the Governor of Saint Martin said: ‘You’ve completely changed my view of dementia.’ That shows what we do here really has an effect on the outside world.”

Sharing experiences was an integral aspect of the group. Throughout the process, key moments highlighted a collective wish to express what it means to live with dementia. The main researcher started to communicate about the group’s meetings on social media, sharing photos to give the group a visual presence and platform. Some members communicated about Brain Power as well. This garnered attention, as it was the first co-researcher group of its kind in the Netherlands. The group’s existence and goals were made known to the wider world. Subsequently, several articles and blogs were written featuring the group. Additionally, the facilitator met a film maker at the university who was impressed by the work of Brain Power. They decided to create a film showcasing Brain Power (HU University of Applied Sciences, 2023). In later stages of the project, facilitators and members did public presentations, sharing key research outcomes with professionals, academic researchers, and others with a personal interest.

The publication of the book “Hoe leef ik met dementie?” allowed members to share their stories with others. This idea was born in members and facilitators together. Members felt motivated helping people in similar situations, as they had missed such a resource after their own diagnosis. It resonated with the main researcher, who had experienced a similar need in caring for her mother with dementia. The group also felt that the book could challenge negative stereotypes about people with dementia and amplify the voices of those who are often misunderstood. As Edwin explained:

We need to challenge the notion that dementia equals a loss of personhood. Our book gives a voice to that.

To ensure the book was accessible, the facilitators worked together with members of Brain Power to translate the research into clear, straightforward language, avoiding jargon and complex terminology, and crafting the text to directly address the reader. An example of a translation is:

The sentence in the scientific paper:

‘The ongoing experience of living with dementia required finding a new balance as partners took care of tasks the person could no longer handle.'

was changed into:

‘Getting dementia affects relationships at home. You need help with tasks that you used to do without effort on your own.'

To reach a wide audience with the book, the group decided to include illustrative stories and poems about everyday life from the Brain Power members. Poems were originally used within the group as a way of enhancing reciprocity, inspired by Synnes (2022), who described how he found poems in the transcripts of group meetings with people with dementia. The facilitators started to make poems, with selected fragments of the transcripts, using a person’s own words with only the punctuation edited. At the next meeting, reading the poems aloud resonated deeply with the members, evoking shared emotions and creating a sense that ‘this is exactly how it is’ in their everyday lives. Later, the group agreed to use these poems for the book. The illustrator created a drawing to convey the message of each poem in a single image, capturing the feeling the poem evoked in the illustrator through the drawing. An example of a poem and illustration is shown in Figure 3.

Figure 3.

Illustration and poem in 'How do I live with Dementia?

Ultimately, the presentation of the book culminated the group’s desire to share their experiences. The launch ceremony was an emotional and meaningful event for the group, which felt deeply empowered by the final product. An important moment was when group members took the stage to speak about their personal journeys and the importance of the collaborative research experience. The facilitators realised they could step back and let the group members take the lead, as the group had become self-directed in sharing their voices.

As Herma, facilitator, reflected: “That was actually the first time you took over. Each of you publicly handed a first copy of the book to someone, with a story, and I thought: I’m not needed here. It was so well done, truly a goosebumps moment.”

Gerda: “You grant us the space to shine.”

Richard: “Being able to take a step back at that moment, that’s something very few people can do.”

Richard: “And what I found so powerful about you was the fact that you, completely unplanned or anything, could take a step back, so that we could-

Jacoba: “—be there.”

Richard: “—and come forward,”

Edwin: “—at that moment. It wasn’t planned, it just happened unintentionally.”

Richard: “Yes, and that gives the—”

Edwin: “—strength.”

The audience was inspired as well, as one of the attendees, a lecturer Social Work shared:

There was not only a focus on dementia but also on seeing the people. The idea of patronising must be removed. That happened. Looking at strengths. I want to focus more on strength-based approaches in research and work with people with experiential knowledge in my lectures.

When the book was released, members eagerly shared it within their networks and beyond. Some were invited to participate in interviews and presentations to further promote the book. They also provided the book to political figures, such as local and national officials. This shows the group’s desire to reach a broader audience and influence how dementia is perceived and addressed in society. To date, more than 1,300 copies have been sold and over 4,100 downloaded within the past year. Responses and reviews of the book indicate that it has been well-received as a helpful resource for gaining insight into everyday life with dementia. One response:

I quickly read the book yesterday. And today, I read it again more calmly. This book feels like coming home to me. (N., diagnosed with dementia)

Additionally, the group hoped to reach an international audience through the publication of an English edition, which has now been realised and published (Huizenga et al., 2025).

The sharing was also aimed at the scientific community. Initially, the main researcher did this by herself. During her illness, one of the members, Gerda, stepped up to give a poster presentation at a scientific conference on behalf of the main researcher and the group. This broke new ground, because in academia, people with dementia are not typically expected to take on such an active role in research presentations. The following year, when the main researcher was invited to present the paper at the 34th Alzheimer Europe conference in October 2024 in Geneva in Switzerland, she and Gerda presented this together. This was well prepared beforehand by discussing the content and presentation format. They felt mutually supported in delivering the presentation together. As Gerda expressed:

We held hands beforehand and said, 'We can do this.' And we did it. We were a team. We demonstrated that a person with dementia can actively engage in research, with just a bit of assistance. I, the one with dementia, fielded questions from the audience directly, rather than the academic researcher.

Sharing experiences was a gradual and inspiring process. This requires ongoing effort and support, as it faces challenges in a society that still does not fully understand people with dementia. The group voiced a mission to collaboratively change practices and policies by expressing their priorities, with the purpose of collectively working to reduce the stigma associated with dementia and contribute towards making the world more dementia friendly.

Theme 4. Carrying on Our Work Together

The members and facilitators became committed to continuing their work beyond the initial research project. Reflecting on the future, the group discussed that each member would likely have to leave at some point due to their condition. As Richard explained:

When we started, we knew there would come a time when we wouldn't make it anymore, so to speak. It's our life story when you have dementia.

He expressed his intention to withdraw from the group due to the progression of his dementia and later discussed the timing for his departure with the main researcher. Together, they found a way for Richard to stay connected by remaining part of the WhatsApp group and providing individual advice from home. This transition was discussed and agreed upon within the group. During the goodbye meeting, it was important to give Richard the space to reflect on what his departure meant for him personally. This moment also provided the group with the opportunity to say goodbye, and for the facilitators to articulate Richard’s significance to the group. Ongoing conversations within the group created space to accommodate people’s changing needs.

The group felt the importance to involve new members to ensure that the concept of Brain Power continues even when current members can no longer participate. They realised that new members would join an existing group and needed support. The group wanted to keep Brain Power going, as illustrated by Richard:

If your group is strong, then you support and guide them. I think you can then prove that we are indeed a group, because we help the new ones on their way and we support them. And I, I think that is also where our strength lies.

Anita added:

I don't want Brain Power to stop. Absolutely not. I would love to continue for many more years, so it's great that it can keep going. If one or more of us were to leave, Brain Power would still continue with new people joining. So, well, I am completely reassured.

These reflections show that the group developed a strong sense of togetherness, enabling members to think creatively about how to sustain the group and continue its work in the future.

To support this, the main researcher began exploring alternative funding opportunities to help sustain the work. She recognised that securing funding was essential for the group’s continuation, as it provided the financial resources for people with dementia to meet, be reimbursed for their time, effort, and travel costs, and to cover facilitator expenses. She also understood that finding funding is a challenging task. The bonds within the group fostered collaborative thinking. For example, member Gerda drew upon her professional expertise to help find funding and make valuable connections for the group. This demonstrated that continuing their work was a shared mission and responsibility.

Discussion

This study identified four key themes based on retrospective reflections gathered in the collaborative process of a three-and-a-half year research project involving academic researchers and a group of co-researchers with dementia, the first of its kind in the Netherlands. Conducting collaborative research requires developing a cohesive group and acknowledging and adapting to group dynamics given the diversity of participants. It involves facilitating reciprocity and mutual learning among all that are involved. The impact of this research is powerfully enhanced by harnessing the inner drive of people with dementia to share their everyday experiences and to advocate for changing perceptions and reducing stigma associated with dementia. This also implies that it is important for co-research groups to envision strategies for continuing their collaborative work in the long term.

This study underscores the importance of a supportive group environment and the influence of group dynamics on participatory and co-production research, as addressed in the existing literature (Bendien et al., 2022; Emke et al., 2024; Gashi et al., 2023). Our findings further elucidate the essential role of facilitators’ expertise in working with groups in an agogic manner. Facilitators must navigate a complex interplay of factors, including the diverse backgrounds of members. When working with people with dementia, there are unique considerations, as certain situations – such as memory-related challenges or becoming disoriented within the building – may occur. Fostering a collaborative group environment through reflection, dialogue, and knowledge exchange is crucial for facilitators. Our study emphasises the importance of drawing attention to the group’s strengths and to build capacities, as also highlighted by Hung et al. (2025). In addition, we describe the value of focusing on structured work processes (e.g., discussion guidelines and meeting structure). In our study, the presence of two facilitators proved essential to complement different qualities and personalities. One of them acted as the main researcher and the other focused on facilitation, which is also described in the model of community development (Kloppenburg et al., 2020). In our work, however, the main researcher fulfilled both roles, which worked well due to the emphasis on reciprocity within the group. Flexible adapting to the phase of the research trajectory is crucial to make the collaboration work.

It is essential to move beyond superficial inclusion of people with lived experience; otherwise, their involvement may be merely symbolic, without granting them meaningful influence in the research process (Hung et al., 2025; Schilling & Gerhardus, 2024). True collaborative research requires investment in genuine and meaningful relationships. To enable their participation in a constructive and productive manner, challenges surrounding collaborative research with people with dementia must be addressed (Groot et al., 2019; O’Connor et al., 2023; Warran et al., 2023). Our study provides key considerations to support researchers who are, or want to be, working collaboratively with people with dementia. This primarily involves developing longstanding partnerships with people with dementia (Hamilton, 2023). Our findings resonate with the principles of the stepping model, a framework for working alongside co-researchers (Williams & Keady, 2021). This model describes a blended approach that highlights different stages of the research and partnership processes, with flexible roles throughout its development. This was evident in the development of our research team, as Brain Power transitioned from an advisory group to a group of co-researchers. The facilitators learned when to step back to help the group stay on track or adjust their focus. They alternated between stepping in to guide the group and stepping back to allow autonomy. Inspired by the Dementia Enquirers, we adopted the expression that people with dementia are in the driving seat of the bus (Berry et al., 2020). This metaphor reflects key principles of co-production research in dementia, emphasising shared decision-making and negotiated roles, as highlighted in other studies (Griffiths et al., 2024; Lord et al., 2022). In this analogy, the facilitator may start the bus, drive for a while, and then hand over the wheel when the group is ready. As on a long journey, drivers can take turns – co-research involves this kind of shared responsibility. Co-research requires dynamic support, characterised by responsive facilitation. Co-research is not simply about letting people with dementia lead. Rather, it requires being equal partners and negotiating roles and responsibilities throughout the process (Hung et al., 2025). As documented in participatory research with other populations, this is also a process of mutual learning (Berring et al., 2021; Emke et al., 2024; Sjölund et al., 2023; Wine et al., 2022).

This study emphasises the importance for academic researchers and practitioners to center the everyday life experiences and perspectives of people with dementia, using their language and terminology. This aligns with the use of ‘the everyday’ as an overarching lens, which previous research has shown can conceptualise the lived experience of dementia beyond conventional care paradigms (Huizenga et al., 2022, 2023). Additionally, the critical elements of non-stigmatising language in text and visuals regarding dementia that avoid distancing are seen in recent literature reviews (Putland & Brookes, 2024a; 2024b) which correspond with the critical social perspectives of citizenship and human rights (Bartlett & Lid, 2025; Collins & Fletcher, 2024; Fletcher, 2021).

Co-reseacher group Brain Power wants other research groups to know that people with dementia can actively participate in academic research when provided with appropriate support. They also emphasise that the lived experience of people with dementia should be the starting point for research. These conclusions align with findings from other collaborative research projects involving people with dementia (Beresford-Dent et al., 2022; Davies et al., 2021; Litherland et al., 2018; Mann & Hung, 2019). Our study uniquely contributes the results of long-term group involvement and the advancement towards co-research across all phases of the research process with people with dementia. Moreover, Brain Power wants to highlight that the collaboration represents a kind of revolution. Initially, it was ‘they’ [academic researchers] asking us questions and ‘we’ [people with dementia] answered. Now, ‘we’ are the ones asking questions.

Nonetheless, co-research may not be suitable for all people with dementia. It requires specific skills, personal interest, and affinity to science, as well as a willingness to share experiences of living with dementia, as was the case with the Brain Power group. The Brain Power group’s diversity, spanning diagnosis times from months to over six years and varied personal narratives, enriched the collaboration with inclusive perspectives. It is critical to note that a group like Brain Power is not representative of all people with dementia. Co-research methodologies can amplify the voices of minoritised groups, like diverse ethnic communities and LGBTQ + groups, although they also bring specific challenges (Cotterell & Buffel, 2023).

To stimulate more inclusive practices of co-research, arts-based methods may be a valuable avenue for further research and development. Such methods are especially valuable for people who have difficulties expressing themselves verbally. This would enable the gathering of knowledge beyond the verbal realm, in pursuit epistemic justice (Groot et al., 2023). Although the literature describes various art-based approaches to explore the lived experiences of people with dementia (Fleetwood-Smith et al., 2022; Smith et al., 2023) and inspiring art-based co-research projects with this population exist (Mittner & Gjærum, 2022), incorporating such methods could also enrich the work of a long-term co-researcher group.

Practical Implications for Research and Practice

The co-researcher group Brain Power wants to share its learning experiences with other research teams that are working collaboratively or that aspire to work collaboratively with co-researchers with dementia. Therefore, based on our 3.5 years of collaboration, our research team has described guidelines to inspire other co-researchers, facilitators and main researchers. These working principles are meant to support meaningful partnership and ensure that co-researchers play an active role in the research process. Importantly, these guidelines are intended not as a set of rules, but rather as an invitation to engage and learn to apply them within one’s own research context. The guidelines are available in the Supplementary material (Appendix B). Brain Power believes that its collective work and experiences can transform perceptions of dementia and contribute to a more inclusive research culture. Lastly, it is crucial for research institutions to develop a vision that emphasises long-term commitment. This forms a necessary precondition for sustained engagement and the continued development of collaborative research practices.

Conclusion

The study identified four key themes underlying the long-term involvement of a co-researcher group of people with dementia and academic researchers in the Netherlands: forging a group identity; learning together as a driving force for co-creation; sharing experiences to transform perceptions of dementia; and carrying on our work together. This study demonstrates that long-term collaborative research with people with dementia as equal partners is not only feasible, but also deeply valuable as it adds a deeper level of understanding and authenticity to the outputs. Our findings emphasise the importance of building genuine relationships and the critical role of facilitators in navigating group dynamics and fostering a supportive environment for reciprocity, shared responsibility, and mutual learning. Ultimately, this study challenges prevailing research frameworks and contributes to social change by placing people with dementia at the centre of research and practice improvement.

For that reason, the final words go to Richard, one of the co-researchers:

The Brain Power story is really a kind of dream.

Like a haze.

As if, yes, as if it’s even real.

It all goes so smoothly.

It is real.

Together, we have made it into a very special dream.

Supplemental Material

Supplemental Material - “We Do This Together”: A Reflective Analysis on Collaborative Research With People With Dementia

Supplemental Material for “We Do This Together”: A Reflective Analysis on Collaborative Research With People With Dementia by Jacoba Huizenga, Herma Tigchelaar, Edwin Doorn, Mike Geurtsen, Richard den Hartoog, Anita Linskens, Gerda Van Tongerloo, Frank Zwertbroek, Jean Pierre Wilken, Nienke Bleijenberg, Aukelien Scheffelaar, John Keady, Tine Van Reg in International Journal of Qualitative Methods.

Footnotes

ORCID iDs

Jacoba Huizenga

Jean Pierre Wilken

John Keady

Ethical Considerations

Ethics approvals for the study was obtained from the Research Ethics Committee of University of Applied Sciences Utrecht, the Netherlands (reference number 2022-5). Informed consent was obtained from the participants.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research is financially supported by an internal scholarship from HU University of Applied Sciences Utrecht. The authors would like to thank Fija van der Meulen for her input on the illustration process; Larry Gardiner and Helianthe Kort for their mentorship to the initiation of Brain Power; and Hans Alderliesten for his comments on the manuscript.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.*

Supplemental Material

Supplemental material for this article is available online.

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Supplementary Material

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