Co-research with people living with dementia for change

Abstract

Research about patients with dementia in the context of acute care has been traditionally designed and carried out by researchers with little or no involvement of people with dementia. Moving away from the traditional way of conducting research on people with dementia, this study involved people with dementia as experts of lived experiences to co-develop knowledge for change. The paper presents our shared experiences (a person with dementia and a researcher) gained from an action research, titled Co-creating Person-Centred Care in Acute Care. We highlight our successes and possibilities for making real impacts on hospital care for patients with dementia by using an appreciative inquiry approach. The project was informed by the core principles of appreciative inquiry. The research involved seven patients with dementia together with a team of 50 interdisciplinary staff to inquire and take actions for improving dementia care in a medical unit. This article draws attention to a range of ethical responsibilities and challenges, which go beyond the traditional principles in University Research Ethics. The strengths and challenges of conducting action research with people living with dementia are discussed. We conclude by offering our learnings and practical tips to encourage more collaboration between researchers and people with dementia in undertaking action research to make social change.

Keywords

Dementia action research appreciative inquiry research ethics collaboration

Introduction

Despite a growing drive for the patient and public involvement in research, people with dementia are often still excluded from many areas of research and are rarely given the opportunity to act as co-researchers (Gove et al., 2017). Engaging people with dementia to conduct action research is considered a new practice and risky process although it contributes to enhancing the impact of research (O’Sullivan, Hocking, & Spence, 2014). This paper describes our experiences (a person living with dementia, Jim and a researcher, Lillian ) in conducting an appreciative action research (AAR) for improving dementia care in a medical unit. Going beyond the traditional University Research Ethics principles, we draw attention to moral responsibilities, sharing power, respectful relationship and critical inquiry in ‘everyday research ethics’ (Banks et al., 2013). In the paradigm of action research, experiential knowledge and individual lived experiences are deeply respected, appreciated and privileged (Reed, 2008). We believe that people with dementia have the rights to not only be involved in research but also as experts of the lived experience. People with dementia should be viewed as active agents who have unique and important perspectives to contribute to producing knowledge related to dementia care. As Swaffer (2014) wrote, ‘not including them [people with dementia] in research not only further stigmatizes them, but hinders the validity of the research’ (p. 710).

Achieving an equal partnership, where the experiential knowledge of people with dementia is valued as much as the knowledge the academic researcher brings has not been well practiced in the community of dementia research. While our review of the action research literature in dementia care identified a growing interest to use action research to improve care in hospital and communities, only a few studies involved people with dementia to co-research for change. For example, Scerri, Innes, and Scerri (2016) conducted an action research with staff in hospital wards to improve dementia care but patients with dementia were not involved. The following are the exceptions. In a recent community-based participatory action research, Phillipson et al. (2018) improved attitudes and reduced the negative stereotypes associated with living with dementia by directly involving people with dementia as spokespeople and educators to promote dementia-friendly community in Australia. McKeown, Fortune, and Dupuis (2016) worked with staff, residents with dementia in Canadian nursing homes and their families to develop Culture Change Coalitions to transform care practice. O’Sullivan et al. (2014) worked with people with dementia living in community and their caregivers to advocate for changes in socio and political issues in New Zealand. Evidence from these projects demonstrated that the direct involvement of people living with dementia is an effective way to promote positive change.

Instead of direct involvement, proxies are commonly used to represent the view of people with dementia in research. When people do not have a say about their involvement in research, they are being researched on like guinea pigs. People living with dementia are widely stigmatized as highly vulnerable victims, who cannot articulate their opinion or have little to offer. Stigma is powerful and can prevent people from speaking up, devalue and segregate people living with the disease (Benbow & Jolley, 2012). It is important to stress that although people experience losses associated with the disease, each person is unique and experience their lives differently. With support, many people continue to live well and want to contribute to society. Recently, Dementia Action Alliance (2016) in the United States published a white paper, titled, ‘Living with Dementia: Changing the Status Quo’, to challenge how negative public discourse and societal attitudes reduced people with dementia to problematic symptoms. Similarly, Swaffer (2014) criticized that researchers have exacerbated stigma in their published writings and conference presentations despite their good intentions. Goffman (1963) explained stigma as ‘spoiled identity’, an attribute, behaviour, or reputation which is socially discrediting in a particular way; it causes an individual to be mentally classified by others in an undesirable, and rejected stereotype. The negative stigma has been challenged by people with dementia who have taken part in research, published articles and books, and made speeches at conferences. For example, Bryden (2005) and Swaffer (2014) are active advocates and have written eloquently about their lived experiences and counter-narratives to challenge the societal stigma and stereotypes in dementia. The European working group of people with dementia and the Scottish Dementia Working Group (2013) have active voices on political advocacy and regularly contribute to public presentations and social media to lobby governments on policy issues related to the needs of people with dementia.

In the literature, although guidelines are available (e.g. Dewing, 2007; Digby, Lee, & Williams, 2016; McKillop & Wilkinson, 2004; Murphy, Jordan, Hunter, Cooney, & Casey, 2015) on how to involve people with dementia in research, most involvements are limited to participation as subjects being researched ‘on’. In Canada, while the Canadian research funding agencies (e.g. the Canadian Institutes of Health Research) are emphasizing patient-oriented research to ensure more relevant research outcomes for patients, there is no robust evidence on working with people with dementia to improve hospital care in the Canadian context. The Alzheimer Society of Canada (2017) has developed principles for meaningful involvement of people with dementia. As little has been written about the experience of people with dementia who took part in action research to make change, there is a need to explore the possible role and value of people with dementia in taking an active lead and influencing research to make real impacts for change. People with dementia can help us understand their priorities and ensure the research serves them. Recently, Swarbrick, Doors, Educate, Davis, and Keady (2016) worked alongside three groups of people with dementia (Open Doors, the Scottish Dementia Working Group and EDUCATE) and developed a co-research model, ‘CO-researcher Involvement and Engagement in Dementia’ (the COINED model). The COINED model stresses positioning people with dementia at the centre of research and ongoing collaboration. Inspired by the COINED model, we extend the effort to raise awareness and draws attention to the role people with dementia can play in research for leading change.

Who are we?

I (Jim) was diagnosed with Alzheimer’s disease in 2007 at the age of 58. With a positive focus on living well with dementia, I have been actively volunteering my time to advocate and educate the public about the living experience of dementia. I want the public to know that people can live a good and meaningful life after the diagnosis, and every individual has a very different experience, depending on their backgrounds, strengths, disabilities, and support. I am committed to reducing stigma and stereotyping of dementia by using insights gained from my personal experience. My background in advocacy and communications for my employer, an international airline company, and management consulting has given me the confidence to be an advocate and an educator. I am comfortable with public speaking, an asset when advocating for social justice for dementia. I actively speak and participate in large and small academic and professional conferences as well as government meetings to elevate the voices of people with dementia. I have co-authored publications in scholarly peer-reviewed articles. I also actively engage in social media to fight the social stigma of dementia and promote social inclusion by educating the public about the condition.

I (Lillian) am a doctoral trained researcher and a clinician. I work as a clinical nurse specialist in the hospital to provide clinical support for staff caring for older patients in the medical and mental health units. I have been practising nursing and caring for patients with dementia care for over 20 years. I was frustrated to see the voices of patients with dementia are often excluded and ignored in clinical settings. I believe people with dementia have important stories to tell that would help clinicians and the public to have a better understanding of dementia. I am committed to bring out the voices of people with dementia and learn from their experiences. A good way to help people solve problems is to work with them (i.e. people with dementia and clinicians) to come up with practical knowledge that is relevant and applicable. The perspective of people with dementia is needed for knowledge production in the field of dementia. I believe it is essential to use a democratic process, involving participation with stakeholders, to achieve knowledge mobilization and utilization. People are more likely to use the new knowledge that they help to create.

Purpose

The research aimed to involve patients with dementia and bring the hospital staff together to improve dementia care in a medical unit. In this paper, we discuss our shared experiences gained from an AAR, titled ‘Co-creating Person-Centred Care in Acute Care’. This article draws attention to a range of ethical responsibilities and challenges, which go beyond the traditional principles in University Research Ethics. We discuss the strategies we used to overcome the limitations of conducting action research together. By offering our learnings and practical tips, we hope this article will stimulate interest and encourage more collaboration between researchers and people with dementia in undertaking action research to make social change.

Research background

The study was a response to the needs of a local general hospital in the urban community in Vancouver, British Columbia, Canada. There has been a rapidly growing demand for care for patients with dementia, but the staff in the hospital were feeling ill-prepared with knowledge and skill to care for the population. I, Lillian, was working in the hospital and studying for my doctoral degree decided to take an action research approach to bring people together to produce knowledge and take actions for change. I invited Jim to be an advisor for the study because his perspective was needed to inform the research design and processes, which involved including patients with dementia in the research. More importantly, we have a shared vision – actively involving people with dementia to co-research is necessary for producing relevant and robust knowledge in dementia care. We both feel the societal stigma undermines the right and ability of people with dementia to take part in research. As Brydon-Miller (2008) stated, ‘research is a form of democratic action and a powerful force for social justice’ (p. 200).

A useful way of thinking about relationships of power and the nature of our collaborative involvement in this study is through the Arnstein’s (1969) ladder of Citizen Participation. Arnstein describes a ladder (hierarchy) of participation, ranging from high to low degree of involvement, where ‘partnership’ is at the upper end of the ladder while ‘manipulation’ is at the lower end. We believe that we achieved partnership as our relationship is genuine and we have a shared commitment to creating real impacts to address problems in dementia care at the local hospital. We are not saying that there were no challenges in our collaboration. As Brydon-Miller (2008) pointed out, it is important to examine ‘the ethical challenges involved in doing action research in settings of highly unequal power’ (p. 207). Thus, we will discuss our challenges and the strategies we used to overcome them in this paper. The ongoing process of regular critical reflection allowed us to discuss ethical issues in the research journey openly and gave credibility to the accounts of our work.

The research project

The research aimed to find possible practical solutions in the physical and social environments to innovate and improve dementia care in a medical unit of a large urban hospital. Appreciative inquiry (AI) provided values, philosophical underpinnings, visions, tools and spirit to guide the research. In AAR, as Zandee and Cooperrider (2008) suggested, ‘the high-quality inquiry depends on the presence of all participants in full voice’ (p. 191). By working with patients with dementia and staff in all departments in the research, we challenged the notion of who has the right to speak and act in transforming hospital care. The study was Lillian’s PhD dissertation work, inquiring about the processes of change in physical and social environments towards person-centred care in a medical unit. The medical unit (31-bed) provided assessment and treatment to older admitted to the unit had dementia or cognitive impairment. The research was conducted over an 18-month period between 2016 and 2017. The key stakeholders included seven patients with dementia, 50 staff, including nurses (30) and allied health practitioners (5), physicians (15), and a senior administrator in leadership. Figure 1 shows stakeholders/participants’ roles and involvements in the research cycles. The process included a spiral of iterative cycles of shared goals identification, joint reflection, collective action, evaluation, and modification.

Figure 1.

Summary of research activities in the three phases of research cycles.

Methodological framework

Informed by an AI approach (Reed, 2008), this action research focused on two core values – positive collaboration and reflexive practice to facilitate change. Cooperrider and Srivastva (1987) described AI as a form of action research that is appreciative, applicable, provocative, and collaborative. AI was chosen for the study because it could facilitate change through a process of co-inquiry and it aligned with our collective desire to focus on positive collaboration. We did not want to get stuck with only finding a long list of problems and leaving people in despair. One of the crucial tasks in this research was to find positive strategies to foster cultural change towards person-centred care by increasing dementia knowledge of all who work in the acute unit. AI is about using the inquiry (research) as a catalyst for actions and change (Ludema & Fry, 2008). Reed (2008) explained the practice relevance in AI does not lie just in the answering research questions, but in the way, that of thinking about practice is challenged. It is to say the critical inquiry in AI can contribute to practice change by challenging ideas about our world, particularly by looking at the world through an appreciative lens. Table 1 shows examples of our reflection and actions guided by AI principles.

Table 1.

Examples of reflection and action exercised in the research.

Reflexive questions	Appreciative inquiry core principles	Actions/strategies guided by everyday ethics
1. How the researcher, Lillian ought to act in the research process to build a positive relationship?	Positive collaborationPositive collaborationReflexive practice	Optimize opportunities to work together, avoid being tokenistic Respect and appreciate the talent, experience and knowledge that Jim brought to the research Openly discuss the risk and benefits, avoid assumptions about burden and risk
2. How can Lillian and Jim use the research opportunity to address stigma and stereotyping of people with dementia?	Reflexive practicePositive collaboration	Ongoing meeting to include critical reflection on assumptions Create opportunities for education Appreciate and recognize the shared commitment for social justice
3. Does the research serve the interest of patients with dementia in hospitals?	Reflexive practiceReflexive practice	Design research actions to improve care experience of patients with dementia in the hospital Modify methods to maximize the contribution of patient participants (e.g. using go-along interviews, video stories)

AI has been criticized for being overly positive and ignoring the negatives (Bushe, 2011). In line with McKeown et al.’s study (2016), we did not ignore problems, but we did use a positive and collaborative approach to tackle problems. Time was spent to listen to people’s concerns and to appreciate the challenges people faced. The commitment and positive energy galvanized were used to motivate change and address the negative problems (e.g. a loss of dignity in patient care and lack of practical knowledge and tools to use to provide high-quality care). We worked together to find possible solutions, including small individual and larger organizational actions. Bushe (2011) asserts:

Appreciative inquiry not only focuses on the best of what is, but it engages all

stakeholders in a process of re-imagining what could be and taking ownership for

what will be. This ‘fusion of strengths’ and ‘activation of energy’ is generally

considered essential to the generative momentum of the change process. (p. 12)

Methods and research process

The research planning started in 2015. Lillian and Jim met and had an initial discussion about the research proposal. We wanted the involvement purposeful, not an act of tokenism. We discussed the purpose of the research and the role that Jim would like to play as an advisor. The university required a formal process of proposal defence for doctoral research. Jim attended the defence and was involved in the defence discussion. Ethics approval was obtained from the university research ethics board and the hospital. In the ethics application process, Jim worked with Lillian to make sure the consent process was appropriate and meaningful for patients with dementia.

The project started in the first month of 2016. We met face to face every four to six weeks to discuss the research work in a coffee shop (a familiar and preferred choice of Jim). In between, we used email to communicate and work on documents of the research. Our conversation included: How can we be creative in this research to raise awareness and change peoples’ attitudes about patients with dementia? What can we do to ensure the research gave benefits to patients with dementia? (see Table 1).

In the first month, Jim gave an education workshop for staff and leaders in the hospital to inspire and engage staff participation and received very positive feedback. Lillian invited patients with dementia to help produce stories in videos about their experience of the hospital environment for staff learning. Video method (go-along interview) was used. I (Lillian) took walks with patients and let them tell stories about what mattered to their care experiences, what worked and what did not in the hospital environment. Staff and leaders watched the videos of patient stories in reflexive groups and decided on the actions they were committed to taking for improvement. Table 2 shows the actions taken as a result of the research. These actions included making comfort mitts to calm anxiety in patients with dementia, developing communication tools to enable family partnership, creating and implementing staff education, etc. Based on the patient and staff perspectives, the hospital foundation approved funding to make changes in the physical environment. Physical environmental changes mainly focused on adding a dining/activity space, comfortable sitting areas for social interaction, and decentralized nursing stations in de-cluttered hallways.

Table 2.

Key action items in research.

Action items	Description
Dementia workshop with Jim	Jim is an advisor, and a person living well with dementia. In this one-hour workshop at the hospital, he taught about key aspects in physical and social environments that could have a significant impact on people with dementia.
10 Design solutions	The 10 proposed design solutions were co-developed by the patients with dementia and the researcher for improving the physical environment of the unit. The document was submitted to the hospital administration to request for change. Key items include: adding small seating areas, using warm colours for walls, making social space for meaningful activities, creating small nursing stations in the hallways.
Gentle persuasive approaches education	A full-day education workshop, with four modules, including person-centred care, changes in the brain, communication techniques, and protective strategies to use in risky situations. The researcher taught all of the staff working in the medical unit the Gentle Persuasive Approaches.
Double F – Fun fair dementia education	The researcher applied an innovative method, using gamification to engage and motivate staff to learn about dementia. In the rehab gym, staff were invited to a one-hour fun fair dementia education, packed with games such as jeopardy, snakes and ladders, photo booth, prizes, food and laughs.
Art workshops	Every Tuesday, an artist, Sarah invited patients to join her to co-create art in the conference room of the unit. Sarah also pushed her art cart to the bedside to work with individual patients.
Gerontology specialty nursing certification	Nurses on the unit attended weekly study groups to learn/review 12 topics in gerontological nursing and they wrote the exam for specialty certification in Gerontology. Topics included: pain management, delirium, etc.
Peer teaching videos	The staff co-produced short educational videos on topics such as delirium, types of dementia, etc.
Comfort mitts	This community project engaged the staff in the hospital and volunteers in the communities to make comfort mitts. The comfort mitts covered IV lines, replaced restraints, engaged social exchanges, and reduced anxiety.
Video reflexive groups	After watching short videos of the patients’ stories, a team of staff reflected and discussed what could be done to improve patient care and experiences. The researcher facilitated the critical reflection and led the team to strategize actions for change.
This is Me & My Daily Care Needs	‘This is me’ is a one-page communication tool, filled out by family members with the patient. ‘My Daily Care Needs’ is care plan that helps the staff to get to know the patients’ preferences and abilities.
The ART & SCIENCE of person-centred care toolkit	This dementia care toolkit included pocket cards, videos, photos, and graphics. The toolkit also offered online links for ordering ‘This is me’ and ‘My Daily Care Needs’ instructions for making comfort mitts, etc.

The participation of patients with dementia has been published in another article (Hung et al., 2017). The process and impact of video reflexive group have been written in another article under review. After the research, we have taken the research outcomes to academic and professional conferences to share our learnings. We continued to meet and decided to co-write this paper to share our experience and learning. Our writing approach involved an iterative process of conversation and writing, as well as reading literature and critical reflection. In the following, we describe our experience in the research process. Lillian identified the related literature in research methodologies and Jim offered his perspective as an advocate for people living with dementia. Our conversations often involved real-life challenges emerged in the research and possible opportunities related to ethics. Therefore, in this paper, we highlight ethical responsibilities and challenges in everyday ethics in the discussion of our experience.

Banks et al. (2013) described two approaches to ethics – ethics as general institutional regulation and ethics as everyday decision-making in research activities. The institutional ethics requires conformity to rules; while the everyday ethics draws on virtue ethics, underlining relationships and ethics of care (Banks et al., 2013). Everyday ethics is situated in everyday practice and is tied to relational and contextual factors (Zizzo, Bell, & Racine, 2016). Everyday ethics draws attention to the need to focus on real-life issues and how contextual factors (e.g. social positions, cultural expectation/stigma) may impede people’s ability to relate to each other. As Banks et al. (2013) described, everyday ethics involves moral values and beliefs about how we should live and interact with one another on a daily basis. For this study, we believed it was vital to have positive collaboration and reflexive practice (core principles of AI), as well as mutual respect, trust, and sharing power (everyday ethics). Rather than being distanced and neutral, everyday ethics allowed me, (Lillian) to see myself as a moral agent in the research process and pay particular attention to the quality of our being together. Situated in our relationship in the research, both of us had responsibilities, values, and commitments for each other and for other participants, which went beyond what Institutional Ethics prescribed. This means ‘the researchers are committed not just to preventing harm in the course of research, but also to promoting social justice and developing caring relationships’ (Banks et al., 2013, p. 275). In the following, we discuss the challenges we faced and how AI and everyday ethics provided directions to guide our actions.

Challenges and lessons learned

Not just to preventing harm but also to promoting social justice

Institutional ethics view the researcher as the expert and the participant as a subject (non-expert). Before the research commenced, the University Ethics Board required the researcher, Lillian, to assure the protection of researched subjects by deciding the risk of harm and strategies to prevent harm. Acknowledging the complexities and potential conflicts in values and beliefs of the people involved in the research, everyday ethics recognizes that a better understanding of protection requires the engagement of the patients’ perspective. Similarly, Brydon-Miller (2008) questioned the perceived need for protection often reflect deeply held prejudices toward marginalized group deemed less competent to participate in research. In our case, while people with dementia may experience particular difficulties such as memory losses, there is a tendency to overemphasize ‘problems’ and underestimate the capacities that people have (Gove et al., 2017). In this project, Jim and Lillian had multiple discussions on the ethical issue of the rights of people with dementia to decide what they want, and they are capable of contributing. Then, I, Lillian contacted the University Research Ethics Board to discuss the important benefits of including patients with dementia in participation and explained how the go-along interview and video method could enable the patient with dementia to take an active role and had more control over the research situation. The research ethics was approved. Patient participants found the research rewarding, and they told rich and compelling stories by using the hospital environment to show what worked well and what was needed for improvement.

One challenge for me, Lillian was to decide how to maximize the opportunities for Jim to contribute and not to overburden him. Jim taught me the meaning of ‘burden’, like risk and benefit, is subjective as it depends on people’s values and beliefs. Jim was committed to working for beneficial outcomes for patients with dementia, reducing the stigma of dementia and promoting social justice. He encouraged me to ask him about what he was willing to do. For him, taking the time to prepare for staff education was not a burden. Traveling to the hospital to give a presentation in the staff forum was not a burden. For Jim, taking concrete actions to educate was an important step to reduce stigma for social change. As Bradbury (2015) underlined, the intention of action research is more than ‘to understand’ problems but also to take real actions for making the world better.

Developing trust, understanding, and respect

In the beginning of the project, Jim wanted to volunteer time and energy to take an active role in the project, but Lillian was uncertain how much and what kind of involvement would be safe and most meaningful for Jim. I, Jim had my challenges and vulnerabilities, but I was creative in coming up with my strategies to address problems as needed. For example, when going to the hospital to teach workshops, I pre-determined my transit route and followed it each step of the way. Like many people, I used my phone and notebook to help me remember things. Working with academics, some people might feel intimidated by their Ph.D. titles, but I did not. I read the literature to prepare myself. I was comfortable in contributing my knowledge because I knew I had something valuable to offer. To develop trust, researchers need to stop making assumptions about what the person with dementia can contribute. Researchers may find themselves surprised at how much they can gain just by asking the person with dementia.

In Canada, patient advisors are usually volunteers, and they are not compensated by financial payment for their time and work. Thus, it was crucial that we had a positive collaborative experience through our interactions in the research. For me, Jim, I wanted to be treated positively as a capable human being. To make the experience as positive and collaborative as possible, I, Jim needed to know the plan, my role and why. Sometimes Lillian might have to slow down a bit or repeat something but I (Jim) appreciated to be treated respectfully, instead of being over-protected. Similar to what McKillop and Wilkinson (2004) highlighted, building a respectful relationship was necessary for collaborative work. As McKillop said, in a respectful relationship, the researcher should be warm but ‘don’t go over the top’ and ‘never show pity’ (p. 121).

For me, Jim, positive collaboration means there is trust, respect and reciprocity. I, Jim know people with dementia sometimes were left feeling used, devalued and abused in research. By involving me early in the process, I, Jim had the chance to get a clear sense of what the project was about and how I might contribute to reaching that goal. Regular meetings and a willingness to listen and adapt were integral to our collaborative experience. I appreciate that Lillian was sensitive to my needs and focused on supporting my strengths. I think meeting at the coffee shop allowed for more robust involvement. I, Jim was able to concentrate better when I was in a comfortable and familiar environment. If we were meeting in an office somewhere else, I would be more stressed getting there. I would be in an unfamiliar spot so there would be more distractions. I sat at my usual table in the coffee shop. I knew everything around me in the place so my ability to concentrate was much enhanced. I remember going into an office at the university to do a memory test, and I did horribly. It was closed door, and there were posters on every wall. There were just too many distractions in the small room. With all those distractions, I couldn’t concentrate.

The blurred boundaries and evolving role from advisor to co-researcher

Reason and Bradbury (2008) described action research as ‘an evolving process of coming to know’ (p. 5). Because it was difficult to predefine the exact involvement of Jim, his role was kept fluid and flexible. In the beginning, I, Jim provided recommendations as the research advisor. For example, I gave my advice for the wording in the consent form and what would be helpful for keeping patients with dementia informed. For example, keeping the go along interview sessions closer together and reminding the patient participants what the research was about. It was important as some patient participants had fluctuating changes in memory functions.

As soon as the research began, as we got to know each other better, Jim’s strengths and personal interest led him to become more involved in the research activities and stepped into a more active role of a co-researcher. His active engagement moved the research toward a more collaborative project with shared roles and responsibilities. In addition to providing his perspective and opinion, Jim delivered educational workshops for the studied unit and presentations in the staff forums for the whole organization.

Jim was interviewed by the hospital a few times and featured in the public websites of the health authority to advocate for the project. Jim was involved in the development of staff training package, including online videos and print documents, as well as research materials and knowledge translation tools (e.g. pocket cards, education brochures and videos). He helped to disseminate research results by sending materials to his networks (e.g. Alzheimer Society) and co-presenting the research outcomes at an academic, a professional and a patient conference.

We experienced mutual benefits and invaluable learning from the research. The active partnership and our positive relationship enabled us to learn together as things emerged and evolved in the research process. Jim’s involvement made the knowledge mobilization and research impact more robust. It was rewarding for me, Jim to see staff education implemented in the medical unit and other hospitals. Although this research focused on a local inquiry in one medical unit, the knowledge gained and action taken can have broad implications. For example, this paper offered more in-depth insights into the challenges and benefits of co-researching with people with dementia. We articulate the complexities and provide practical tips for others to draw on when addressing similar concerns.

The need to tackle systemic assumptions to enable collaboration

Researching with people means that they are engaged as full persons, and the exploration is based directly on their understanding of their own actions and experience, rather than filtered through an outsider’s perspective (Reason & Bradbury, 2008). For me (Jim), research means having opportunities in making an active contribution. It is important to see my efforts are making a real difference to help improve the lives of people with dementia. In this project, I ensured the research had a positive outcome for the patients with dementia in the hospital. I gave my opinions and comments on interpretations of findings and implications to ensure the research would have real impact to change people’s attitude and practice.

Having dementia does not mean a person automatically lacks the capacity to make decisions to participate in research and to contribute his or her knowledge. Excluding the direct voices of people with dementia in the research reinforces stigma and negative stereotyping. In the project, I, Jim provided my opinion and advice while Lillian continued to inform issues and situations that needed to be addressed. The staff commented on the first-person accounts, and the contribution of Jim made the research more powerful and robust. Learning the stories and lived experience directly provided by Jim, staff and leaders had many ‘Oh-Ah-Oh, I didn’t know’ and ‘Ah-Ha, now I understand’ moments. Such experiences challenged and shifted people’s attitudes and interests in joining the project. This fulfilled our obligation in action research to generate knowledge and action that bring about change.

Reflecting on my experience, I, Lillian came to realize the necessity of having honed skills in self-awareness and reflexivity. I, Lillian learned to look inward, critically examine my biases and stay open to explore possibilities. Using an appreciative lens, I, Lillian was able to see the extraordinary talents of Jim and support him to maximize his contribution to the project. I could not have achieved the research impact if I used a deficit-based lens, that is, starting with the assumptions that he is impaired needing to be protected. By focusing on the strengths and potentials, people involved in the project were empowered with positive energy and enthusiasm to work together for change. By paying attention to the power dynamics, the inquiry became a shared responsibility and ownership. Jim and the patients involved in the research were viewed as experts and active contributors, rather than subjects to be researched on.

To enable successful collaboration, I, Jim believe that one of the essential characters that the researcher must have is to have full respect of the person with lived experience. The full respect also means being open to options, listen to the person, and open to amending the plan or considering other alternatives. It’s not right to discount the experiential knowledge and lived experiences. There are pervasive stigma and negative stereotyping in dementia. That’s why we’ve got to put all that aside. A researcher might expect little of me when he or she hears that I have dementia, while my own expectation of me is way up here. I, Jim would like to be able to choose what I can contribute, and play an active role to make a difference.

To keep Jim motivated in our research, I, Lillian let him know about how his contribution was shaping the research. Jim’s involvement in providing feedback for research outcomes helped in checking the validity of the results and implications. This not only enhanced the credibility of the research but also helped to make sure the study outcomes were relevant and beneficial for people with dementia.

In the next session, we offer five practical tips based on our lessons learned. We call them ASK ME: Avoid assumption, Support the person to do the best, Knowledge needed to be put into action and acknowledged, Meet regularly and early, and Ethical sensitivity and responsibility.

Practical tips: ASK ME

A – Avoid assumption

The attitude of the researcher is crucial in working with people with dementia. Slow down to examine assumptions and beliefs about dementia. Pay attention to how the relationship in research is built and power is shared.

S – Support the person to do the best

It is useful to take the time to get to know the person. Get to know the person and know what the person is good at and comfortable with. Support the person to maximize contribution and avoid exploitation. See the person with an appreciative lens helps to focus on strengths and possibilities. In our project, meeting at the coffee shop in the morning made our communication comfortable and enjoyable. Little things, such as timing and location of meetings matter.

K – Knowledge needed to be put into action and acknowledged

Action research is grounded in practice, and thus it challenges expert knowledge, which speaks about action without actually engaging in action. Researchers should think carefully about what they are asking and what they will do with the knowledge created. In our study, we focused on collective learning to explore how we might develop joint action. Providing timely updates, research progress and summary reports helped to make the work transparent and demonstrate accountability. People need to receive feedback on how their input shaped the research project and made a difference. Letting people know their contribution made a difference helped boost energy and motivate continuation of participation.

M – Meet regularly and early

Regular on-going meetings allow for that sense of – oh yeah, I do remember about the project and ensuring a sense of confidence. It also lends authenticity to the involvement in the research. In our project, having regular meeting allowed Jim to pull reading during the time in between to do some preparation. Early involvement allowed him the opportunity to participate in the fullest term and more time for us to build trust and relationship.

E – Ethical sensitivity and responsibility

Every effort should be made to ensure that the involvement of the individual is a positive collaboration. Academic researchers can benefit from training in developing ethical sensitivity and responsibility in everyday ethics. Knowledge and skills in the first person, second person, and third person action research will enhance the capacity for high-quality research process and outcomes.

Conclusions

This is the first study where a person with dementia was involved as an advisor to co-research in a doctoral study for improving hospital care. This paper offers a unique contribution to the knowledge base of action research in the field of dementia care by beginning to use the first-person voice to drive change. We have three main conclusions. First, we argue for the need to go beyond institutional ethics to recognize and overcome challenges in researching with people with dementia. Conducting action research with people with dementia for change on hospital care can be challenging because it demands a critical reflexive process to address challenges in power inequities. Aligned with previous action researchers, who, drawing on AI, we identified specific challenges and tested out strategies to support research for change. Building on the work of Banks et al. (2013), we call for more attention to everyday ethics, recognizing the relational nature of action research, as well as acknowledging the role of patients’ perspectives.

Second, our practical tips, ASK ME provides a useful framework and catalyst to encourage for more positive collaboration and reflexive practice to action research in dementia care. Speaking about positive collaboration and reflexive practice underlined by AI is mere talk if the words are not carefully practiced. In this paper, drawing on our practical experiences, we provide an in-depth and realistic interpretation of ethical practice for future action research in the field of dementia studies. One of our key contributions is deepening understanding of what it means to engage people with dementia as co-researchers in action research. Our lessons demonstrated that the positive relationship, featured with collaborative, reflexive and respectful approaches, was key to enhance the quality and rigour of the research. As Reed (2008) maintained, co-creation in AI brings in those who are affected by change from the start, allowing them to bring their strengths and expertise at an early stage and throughout the research. Our experience of working together in the research lends support to the notion that AI and everyday ethics contribute positively to generating energy and creativity to innovate change.

Third, our study outcomes demonstrated the invaluable contributions that a person with dementia can offer to knowledge and practice. The prevailing stigma and stereotyping about dementia remain as a dominant barrier for working with people with dementia in research and few scholars explore strategies to enable positive collaboration and meaningful research impact. Future research needs to further examine the potential of action research in dementia, especially with AI in creating opportunities to maximize research impact. As highlighted by Brydon-Miller (2008), action researchers privilege the voices of less power, have a deep respect for people and for the knowledge and experience they bring to the research process, and choose to believe in the ability of the democratic process to achieve positive social change. The AI approach in action research has much promise for bringing together the strengths, resources, and perspectives needed for positive change. We plan to maintain a long-term relationship for future research and will continue to develop more knowledge and skills in working ‘with’ people with dementia together in research.

Footnotes

Declaration of conflicting interests

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

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by Canadian Institutes of Health Research (CIHR) and Vancouver Coastal Health Robert Ho Scholar Award.

Author biographies

Jim Mann was diagnosed with Alzheimer's in 2007 at the age of 58 and now volunteers his time to advocate for living well with dementia. He is an active member of CEAN (Community Engagement Advocacy Network) in Vancouver Coastal Health.

Lillian Hung is postdoctoral fellow in the Department of Gerontology at Simon Fraser University and clinical nurse specialist at Vancouver General Hospital. Her research focuses on community engagement and dementia care.

References

Alzheimer Society of Canada. (2017). Meaningful engagement. Retrieved from http://www.alzheimer.ca/en/We-can-help/Resources/Meaningful-engagement

Arnstein

S. R.

(1969). A ladder of citizen participation. Journal of the American Planning Association, 35(4), 216–224.

Banks

Armstrong

Carter

Graham

Hayward

Henry

, . . . Moore

(2013). Everyday ethics in community-based participatory research. Contemporary Social Science, 8(3), 263–277.

Benbow

S. M.

Jolley

(2012). Dementia: Stigma and its effects. Neurodegenerative Disease Management, 2(2), 165–172.

Bradbury

(2015). Introduction. In Bradbury

(Eds.), The Sage handbook of action research. Boston, MA: SAGE.

Bryden

(2005). Dancing with dementia: My story of living positively with dementia. London, England: Jessica Kingsley Publishers.

Brydon-Miller

(2008). Ethics and action research: Deepening our commitment to principles of social justice and redefining systems of democratic practice. In Reason

Bradbury

(Eds.), The Sage Handbook of Action Research: Participative Inquiry and Practice (pp. 199–210). London, England: SAGE.

Bushe

(2011). Appreciative inquiry: Theory and critique. In Boje

Burnes

, and Hassard

(Eds.), Routledge companion to organizational change (pp. 87–103). Oxford, England: Routledge.

Cooperrider

D. L.

Srivastva

(1987). Appreciative inquiry in organizational life. Research in Organizational Change and Development, 1(1), 129–169.

10.

Dementia Action Alliance. (2016). Living with dementia: Changing the status quo. Retrieved from http://daanow.org/wp-content/uploads/2016/04/Living_Fully_With_Dementia_White-Paper_040316.PDf

11.

Dewing

(2007). Participatory research: A method for process consent with persons who have dementia. Dementia, 6(1), 11–25. doi:10.1177/1471301207075625

12.

Digby

Lee

Williams

(2016). Interviewing people with dementia in hospital: Recommendations for researchers. Journal of Clinical Nursing, 25(7–8), 1156–1165. doi:10.1111/jocn.13141

13.

Goffman

(1963). Stigma: Notes on the management of spoiled identity. London: Penguin Books.

14.

Gove

Diaz-Ponce

Georges

Moniz-Cook

Mountain

Chattat

, . . . European Working Group of People with Dementia. (2017). Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement). Aging & Mental Health, 22(6), 1–7.

15.

Hung, L., Phinney, A., Chaudhury, H., Rodney, P., Tabamo, J., & Bohl, D. (2017). “Little things matter!” Exploring the perspectives of patients with dementia about the hospital environment. International Journal of Older People Nursing, 12(3), 1–10.

16.

Ludema

Fry

(2008). The practice of appreciative inquiry. In Reason

Bradbury

(Eds.), The Sage handbook of action research (pp. 280–297). London: SAGE.

17.

McKeown

J. K.

Fortune

Dupuis

S. L.

(2016). ‘ It is like stepping into another world’: Exploring the possibilities of using appreciative participatory action research to guide culture change work in community and long-term care. Action Research, 14(3), 318–334.

18.

McKillop

Wilkinson

(2004). Make it easy on yourself ! Advice to researchers from someone with dementia on being interviewed. Dementia, 3(2), 117–125.

19.

Murphy

Jordan

Hunter

Cooney

Casey

(2015). Articulating the strategies for maximising the inclusion of people with dementia in qualitative research studies. Dementia, 14(6), 800–824.

20.

O’Sullivan

Hocking

Spence

(2014). Action research: Changing history for people living with dementia in New Zealand. Action Research, 12(1), 19–35.

21.

Phillipson

Hall

Cridland

Fleming

Brennan-Horley

Guggisberg

, . . . Hasan

(2018). Involvement of people with dementia in raising awareness and changing attitudes in a dementia friendly community pilot project. Dementia. doi:10.1177/1471301218754455

22.

Reason

Bradbury

(2008). The Sage handbook of action research: Participative inquiry and practice (2nd ed.). London, England: SAGE.

23.

Reed

(2008). Appreciative inquiry: Research for change. Thousand Oaks, CA: SAGE.

24.

Scerri

Innes

Scerri

(2016). Using appreciative inquiry to implement person-centred dementia care in hospital wards. Dementia. doi:10.1177/1471301216663953

25.

Scottish Dementia Working Group. (2013). Core principles for involving people with dementia in research. Retrieved from http://dementiavoices.org.uk/wp-content/uploads/2014/06/Involving-people-with-dementia-in-research1.PDf

26.

Swaffer

(2014). Dementia: Stigma, language, and dementia-friendly. Dementia, 13(6), 709–716. Retrieved from http://doi.org/10.1177/1471301214548143

27.

Swarbrick

Doors

Educate

Davis

Keady

(2016). Visioning change: Co-producing a model of involvement and engagement in research (innovative practice). Dementia. Retrieved from http://doi.org/10.1177/1471301216674559

28.

Zandee

D. P.

Cooperrider

D. L.

(2008). Appreciable worlds, inspired inquiry. In Reason

Bradbury

(Eds.), The Sage handbook of action research: Participative inquiry and practice (pp. 190–197). London: SAGE.

29.

Zizzo

Bell

Racine

(2016). What is everyday ethics? A review and a proposal for an integrative concept. The Journal of Clinical Ethics, 27(2), 117–128.