Facilitators and barriers to co‐research by people with dementia and academic researchers: Findings from a qualitative study

Abstract Background Public and patient involvement (PPI) is now established in dementia research. Barriers and facilitators to engagement from family carers and people in early stages of dementia have been explored. However, specific barriers and facilitators to co‐research with people with dementia have not previously been investigated. Objective To discover the facilitators of, and barriers to, involving people with dementia as co‐researchers, from the perspectives of people with dementia, gatekeepers (family caregivers, ethics committee members, service providers) and researchers. Design Thematic analysis of data from individual interviews about the co‐research experience. Results Four themes emerged from interviews with 19 participants (five people with dementia): “getting one's head round it” (assumptions about research and dementia; different forms of language); practicalities (eg transport; accessibility of communication); “this feeling of safety” (perceptions of danger, protectiveness and opportunities for building trust); and motivations (“making a difference” and “keeping doing”). Conclusions Findings both replicate and extend previous knowledge on PPI in dementia. Cognitive capacity of potential co‐researchers with dementia is only a part of the picture, with attitudes and expectations of researchers, gatekeepers and people with dementia also forming barriers. Researcher education, adequate resourcing, and both creativity and flexibility are needed to support recruitment of co‐researchers with dementia and to enable meaningful co‐research.


| INTRODUC TI ON
In the UK, government health-care policy stipulates "partnership between patients and clinicians in research," 1 and applicants to national funding bodies must describe public involvement. 2 Service user involvement has taken the form of consultation and collaboration, 2,3 but now progressed to include co-research where individuals do not merely comment on aspects of research but are actively involved in shaping the process. [4][5][6] It is suggested that co-researchers who have lived experience of the condition under investigation ("peer researchers") can enhance the research process by, for example, identifying issues that may be overlooked by academic researchers 2 or putting interviewees at ease by bring research closer to everyday life-experiences and so enabling more open talk. 7,8 "Peer" research has been undertaken in populations that are unrepresented in researcher teams, for example, young people, [9][10][11] people with intellectual disability, [12][13][14][15][16][17] significant mental health difficulties 13,[17][18][19] or people in later life. 13,20,21 However, there have been few attempts to involve people with dementia as co-researchers.
Until the 1990s, the perspectives and subjective experiences of people with dementia were largely absent from research. 22 People with dementia have, by definition, significant impairments in two or more cognitive domains, such as memory, attention, perception, language and executive function, which necessarily impacts on an individual's ability to participate in, or engage with, research. Yet today the voice of the person with dementia is heard increasingly, in personal testimony, public consultation, service development and research. 23,24 Core principles for involving people with dementia in research have been co-created, 27 and barriers and enablers to the engagement of people with dementia in research have been identified. 28 Of the 54 studies eligible for inclusion in a recent scoping review of engagement in dementia research, three studies involved people with dementia in data collection and eight described involvement in analysis. 28 However, findings on barriers and facilitators to research engagement were derived from reflections of study authors rather than direct interview with (co-)researchers.
The aim of the current study was to explore facilitators and barriers to people with dementia becoming co-or peer researchers, from the perspectives of people with dementia, "gatekeepers" to research and researchers.

| Approach
A "subtle realist" approach was adopted on the premise that we have multiple accounts, all of which are themselves shaped by various contexts, assumptions and beliefs. 29,30 Subtle realism encourages the use of accounts both as evidence about the phenomena they describe and as social constructions, reflecting beliefs and assumptions.

| Participants
Participants were eligible if they (a) had direct or indirect experience of a research project that attempted (successfully or otherwise) to involve people with dementia as co-researchers. (b) English language is fluent enough to take part in an interview (c) capacity to give informed consent.

| Sampling Strategy and settings
Participants were purposively sampled from three groups: (a) researchers with experience of recruiting (or attempting to recruit) and working with people with dementia as peer researchers or co-researchers; (b) "gatekeepers" to research, such as health, social care or voluntary sector staff, or family members who "stood between" a person with dementia and their potential involvement as a co-researcher; and, (c) people with dementia with experience of coworking with researchers. Recruitment took place through research team contacts, UK-based researchers currently engaged in, or with published accounts of, attempts to recruit people with dementia as co-researchers. People with dementia were recruited from voluntary sector organizations in the UK, and from among co-researchers recruited to the PRIDE study. Gatekeepers were recruited via "snowballing" where one participant plays a part in recruiting subsequent participants. For example, participant researchers were asked whether they could name the ethics committee which had scrutinized their project(s). If they were able and willing to name the committee(s), then the committee administrator was contacted by JW and asked to circulate to the committee the information sheet for this interview study. Interested ethics committee members then made direct contact with JW .
Where sampling selections were made, this was done to maximize the breadth of the sample, with a minimum of five individuals per group.

| Interview procedure
Interviews were carried out at a location of the participant's choice (eg home or workplace) and lasted around an hour. The topic guide for the interview was based on the Capability, Opportunity, Motivation model of behaviour change (COM-B) 31 with questions designed to elicit participants' views about the capabilities, opportunities and motivations that might enable or prevent a person with dementia undertaking co-research. The term "capability" encompasses both physical and psychological (eg being able to engage in the thought processes necessary for the target behaviour, having capacity etc…); "opportunity" could be linked to the physical environment (eg being provided with transport) or the cultural environment (eg not invited to participate because of assumptions about abilities). "Motivation" includes processes that are intentional (eg "I want to make a difference") or automatic (ie impulses and emotions arising from associated learning or innate dispositions).
The theory-based questions were refined through discussion with the PRIDE PPI group. Then, after four interviews, minor revisions were made to allow more flexible use with researchers who had tried and failed to recruit people with dementia as co-researchers and were therefore responding hypothetically. The study interviewer (JW) received advice on interviewing people with dementia from an Alzheimer's Society service-used review panel.

| Analysis
Interviews were transcribed verbatim, ensuring that any punctuation clarified the meaning of the original utterance. The five phases of thematic analysis were carried out by [initials removed for blind review]. 32 Initial codes were grouped, looking first for themes within each participant group, then looking across the whole data set. Themes and subthemes were refined through discussion with [names removed for blind review] and finalized in discussion with all authors.

| Participants
Nineteen interviews were conducted: six academic researchers, eight gatekeepers and five people with dementia (Table 1).

| Themes
Four themes were extracted, each with subthemes: Theme 1: "getting your head round it" refers to attitudes about feasibility of co-research with people with dementia. Some participants were considerably more doubtful than others, with doubts themselves posing a barrier to recruitment.
But when she recalled a co-researcher with dementia whom she had worked with, she explained this as an exception with reference to the "early stage": -it must have been early stage and she was probably alright. As I say she would sometimes forget at workshops but she would get through and it was fine. (GK13) However, talking of stages inevitably draws attention to progression into a late stage, where the person is again seen as completely incapable ("losing it altogether" in the words of participant 12). Talk of doing research during the early stage is therefore often accompanied by concern about deterioration: Who judges where the threshold is, the line in the sand is crossed, you know?
The language of stages may enable envisaging someone with "early" stage dementia as co-researching, while nonetheless raising the spectre of the "late" stage. The talk of all six participant researchers reflected how co-research was made easier to consider to contemplate when the individual service user perspective was seen to have intrinsic validity.
All three co-research-experienced researchers also reflected on the need to "learn from experience," and let go of assumptions: One person with dementia imagined the presence of the researcher not as reassuring but restrictive: We should be left alone, not being controlled, there is a lot too much control, I feel, but that is my opinion.
The speaker's plea here for time to allow relationship building is echoed by a researcher remembering their decision not to prioritize efficiency when deciding to drive co-researchers to and from interviews: The second remembered how they had pointed out some uneven carpet as a potential hazard: …so I said "That lady won't see that!" to the manager.
"And it needs to be flattened," so before we left it was flattened.
The detail with which people with dementia described discrete instances of "making a difference" contrasted with the more generalized way they talked about the more common experience of "tokenism" (where a person with dementia is invited to attend a meeting simply so that the claim can be made that they were involved): We weren't given the opportunity to speak, we weren't included in anything, we were just there, so they could say they "had" you.
Participants from all three groups refer to the dangers of tokenism.
While the emphasis for the people with dementia is on the experience of invalidation, the researchers' focus is on resisting the urge to recruit people just to fulfil the research brief: We wouldn't have wanted someone with dementia just sitting there just for the sake of saying oh we've got someone with dementia involved (R5) In terms of what enables "making a difference," there are some tensions within the data. Two of the researchers talk about participants contributing as much or as little as they want, to accommodate those whose ability to be involved is limited: You know it's as much time as you feel you can give.
We're also interested in your views on our analysis. So it's as much time as you can give.
Arguably, though, by locating this limitation in ability to be involved inside the people with dementia, these researchers are avoiding the question of whether they might not create, for example, a shorter project which would enable the person to participate more fully. One person with dementia saw this kind of attempt at inclusion as more tokenism: If your involvement is that haphazard, are you actually involved in it? Or are you just going along and saying "Oh, we've got so and so and they've been diagnosed with…as part of our team." There are further tensions regarding the differences that researchers hope to make through co-research. While most researchers saw co-research as potentially empowering people with dementia, there was more ambivalence as to whether it would make a positive difference to research data. Those who had carried out co-research saw a value in the additional perspective brought by the person with dementia; others were more ambivalent: What were we doing it for? Were we expecting it to make a difference to the data? (R4) In the main, participants saw this "keeping doing" as a positive reason for engaging in co-research. However, there was one exception; one participant within the gatekeeper group described how for some people, for example those who are retired and see a positive value in no longer being at work, the thought of being a researcher is quite unattractive: As far as they're concerned, they've done their job, this is a job, being in research is a bit like a job, and if you're old and you've retired, I don't want to go and sit and talk to an academic, I really don't.
So, with one exception, the "keeping doing" subtheme represents a means of the person with dementia staying engaged with life, or maintaining valued aspects of their identity.

| D ISCUSS I ON
Findings from this interview-based, qualitative study on the involvement of people with dementia in co-research both replicate and extend knowledge of facilitators and barriers to PPI engagement.
Comparing findings from this study with Bethell's recent review, 28 barriers in common include the following: time and costs; "gatekeeper" attitudes; difficulty identifying "representative" individuals and groups; (actual or perceived) complexity the research process; lack of training and experience; and the potential for distress. 28 Similarly, facilitators in common include the following: early planning Creativity, flexibility and careful planning are required to achieve a balance between scientific integrity and a "good fit" for co-researchers, but key attributes for academic researchers appear to be the willingness to take time to engage and frequently re-connect with co-researchers.
The current study extends previous findings of the importance of good relationships and communication to highlight both ontological and interpersonal safety. The theme of feeling "safe" encompassed not only the relationship between researchers and collaborators with dementia but also the need for the person with dementia to be at ease with themselves and their diagnosis. The benefits of developing a sense of familiarity and trust have been emphasized previously for people with dementia engaged in social change. 36 Finally, this study extends the knowledge of motivations of people with dementia to engage with co-research opportunities. It is evident that the co-research role is not something that is likely to be of interest, or within the capacity, of many people with dementia.
A primary motivation for those that do engage is the person with dementia's desire to help others; a factor previously identified for carers of people with dementia in research and older co-researchers both with and without dementia. 21,37 In contrast, the more latent aspect of deriving pleasure from seeing the impact of your actions was more specific to people with dementia and has not been identified previously in the co-research context. The desire to "carry on engaging with life" was also an important motivation and is in keeping with the dementia literature around "valued identities" and the desire to maintain a sense of continuity with the pre-diagnosis self. 28,38,39

| Strengths and limitations
The data collection for this study took place during a time of development in PPI, including a change in terminology used to describe the person with dementia working with an academic researcher from "peer researcher" to "co-researcher". We moved to adopt the new terminology as the term "co-researcher" seems a better fit than "peer" for circumstances where there can be wide variation between a research participant with dementia and a researcher with dementia in terms of the specific dementia diagnosis and cognitive abilities.
Since the completion of the project, European guidelines have been published on the involvement of people with dementia in PPI which includes the term "co-researcher" but not "peer researcher." 40 Secondly, recruitment to this study was limited to voluntary and University sectors, and not NHS channels (aside from NHS ethics committee members). Although the original plan was to include NHS recruitment, the actual sample better represents the current practice of co-research in the UK, given the governance arrangements for co-research in NHS settings carry a high level of burden. 3 Thirdly, there was a protocol change in that the original intention to use COM-B as a coding framework for analysis was abandoned in favour of a "bottom-up" analytic approach. During the analysis phase, it became apparent that coding within the COM-B model would result in the separation of themes in a way that obscured participants' contributions. For example, the "good fit" subtheme encompassed the interplay between two categories that are distinct in COM-B, namely individual capabilities and opportunities.
Similarly, the "this safe feeling" theme comprised talk about feelings (fear, comfort) and conditions that gave rise to those feelings (having time to get to know the researcher) which, within the COM-B model, would be categorized as motivations (ie emotions arising from associative learning) and opportunities, respectively.
Although sampling procedures were designed to maximize diversity, the majority of participants were white and female. All people with dementia had only "mild" impairments, and only one participant with dementia had direct experience as a co-researcher on a desig- However, despite differences between and within groups in terms of individual positioning, there were themes that ran through the entire data set.

| Academic researcher training
Before embarking on co-research with people with dementia, academic researchers should not only familiarize themselves with available guidance, 27,40 but also examine their own assumptions about "research" and "dementia" to identify unhelpful stereotypes.
Recruitment of co-researchers with dementia could be facilitated by ensuring that aversive language (eg decline, later stages) is not used in information sheets and that the potential benefits described are those that are meaningful to people with dementia (eg making a difference; building on existing skills). Direct recruitment (rather than via gatekeepers) may also be relevant, as has previously been advocated in the intellectual disabilities field. 41

| Balancing the right to be involved with protection from potential harm
The newness of the co-researcher role in dementia means that a bal- ance has yet to be struck between protection of potentially vulnerable people and the right to be involved. It is vital that researchers have considered and addressed potential harms, from tokenism 40 to overwhelming cognitive or emotional demands. Tokenistic involvement is to the detriment of the co-researcher with dementia and brings research into disrepute. At the other end of the spectrum, involvement in activities that are too cognitively or emotionally intense will risk distress and thus reinforce the belief that the involvement of people with dementia as co-researchers is harmful to well-being. The fear of emotional consequences from exposing co-researchers to people with more advanced dementia reflects wider societal fears of exposure to the fourth age. 42 While there are indeed potential risks to involving co-researchers with dementia, we can seek to avoid or manage such risks rather than veto the co-research enterprise.

| Future research
Any future qualitative explorations of the co-researcher experience may benefit from including non-research-active family carers who are gatekeepers for a co-researcher with dementia (given the potential for differences in perspectives between carers who are, and are not, co-researchers) and from providing alternatives to the "traditional sit down interview" for data gathering with people with dementia.

| CON CLUS IONS
People with dementia engaging with the co-research role often see it as important to continue to make a difference, gaining a sense of satisfaction from making a meaningful impact. The cognitive profile of people with dementia has practical implications for research, but this, and other barriers to participation, can be often be addressed with adequate time, resources, creativity and flexibility to find a "fit" between the person and the task. Methodologies from other contexts may help in achieving the involvement of co-researchers with dementia.

ACK N OWLED G EM ENTS
An earlier version of this work was submitted by J Waite for partial fulfilment of the Clinical Psychology Doctorate at UCL. Tanisha De Souza is thanked for formatting the references for this paper.