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Abstract

Most research about dementia consults with carers, community workers, nurses or other health professionals, but rarely with people living with dementia (PLWD). This paper investigates why this is the case and documents the extent to which dementia research includes those with lived experience. We searched for studies reported in academic articles focussing on dementia that described using participatory methods. Approximately half of the studies we found were excluded because the purpose of the research was commercial (developing apps or other products) and comprised only superficial product testing with PLWD rather than seeking any insight into their lived experience. Other studies were excluded because for various reasons, most significantly not meeting the definition of participatory methodology we adopted from Cornwall and Jewkes (1995). Ultimately only 27 academic articles were included in the analysis. In each of these studies the seven stages of research we identified (conception; design; participant recruitment; data collection; analysis; validation and knowledge translation) were evaluated for participatory methods. We found only one study which undertook participatory methodology in all stages which was the intended purpose of the research. We found that recruiting research participants, undertaking data analysis or validation with PLWD was seldom done and conceiving the study with PLWD was the rarest of all. In most studies we identified that participatory research was limited to only two or three research phases: data collection scored highest, then dissemination of data and then design. We found that participatory research with PLWD was not often considered possible and that rationales for the lack of consultation, when given, were largely ethical, or because of resource and time constraints. We found however that certain environments and approaches were more hospitable to PLWD involvement. This article describes exemplary examples of participatory research in different stages of the research processes, documents the strategies used to enhance participation and recommends increasing participatory methodology so as to better understand the perspectives and insights of PLWD making assessments and recommendations more effective.

Keywords

participatory action research qualitative evaluation secondarydata analysis community based research methods in qualitative inquiry

The key difference between participatory and conventional methodologies lies in the location of power in the research process… Participatory research raises personal, professional and political challenges which go beyond the bounds of the production of information. Cornwall and Jewkes (1995).

Introduction

Dementia is incurable, degenerative, and disabling. At the individual, interpersonal and household levels, its idiopathic trajectory contributes to uncertainties around the nature and timing of symptoms, physical and mental capacity in the present, and understandings of the future (Alzheimer’s Society, 2022). At the methodological level, dementia impacts – and impedes – traditional social science knowledge gathering processes because of issues around individual capacity, the stage of dementia, and the manifestation of the condition, including the symptoms experienced (Field et al., 2019). These factors have influence at all research stages, from project timelines, awareness and promotion of research opportunities, establishing appropriate recruitment processes, determining capacity to consent protocols which account for dementia stage and day-to-day fluctuations, health challenges not directly related to dementia, and negotiating the requirements of study participation (Bartlett et al., 2018; Field et al., 2019; Lepore et al., 2017; McKeown et al., 2010).

The inclusion of people with dementia remains essential for understanding the personal impacts of a dementia diagnosis and the development of appropriate sociocultural and psychosocial supports, as well as for interventions and treatments (West et al., 2017). Yet their voices are often omitted from research (Cotrell & Schulz, 1993; McKeown et al., 2010). This under-representation stems partly from the practical and methodological considerations outlined above; however, it may also be an artefact of the paternalism of research ethics processes which treat people with dementia as particularly vulnerable and in need of ‘protecting’ (Soofi, 2021).

Methodological shifts over the past decade have resulted in a renewed emphasis on community participation and inclusive knowledge production practices in health-related research (Ahmed & Palermo, 2010). Efforts have been made to better include the perspectives of people with dementia, including capturing the accounts of primary caregivers, either as sole participants or as half a dyad alongside the PLWD. For example, Hydén’s (2014, 2015) observational work of mundane household collaborations between family members with dementia and their caregivers showed how caregivers can act as both interlocutors while also facilitating an important – yet less conventional – form of knowledge production around the lived experience of dementia. Participatory research strategies were identified that facilitated the voices of and recognised the agency of people with dementia as active interlocutors about their lives, as well as some key factors that support participation of people with dementia in research.

Participatory Research: Goals and Processes

Principles of participatory research start with a focus on agency and voice. They acknowledge that people are agents capable of analysing their own situation and designing solutions, while the researcher adopts the role of catalyst or facilitator. When participants are directly involved in the design of research and collection or analysis of data their perspectives, values and experiences are imbued in processes and findings and a clearer picture or understanding of the situation can be found which should make assessments and recommendations more effective. At its heart, a participatory approach seeks to generate processes of empowerment created through reflection and analysis with research participants and communities. In so doing, standard qualitative research techniques may continue to be used alongside these processes of sequential reflection, however the emphasis may shift. For example, participatory methods can seek to facilitate visualised analysis by inviting interlocutors to draw on local symbols, materials and mediums which represent aspects of their lives. Strategies such as body mapping, seasonal or other locally generated calendars, history timelines, or treatment diagrams, as well as creative research methods including performance, music, art, and storytelling, all have a role to play here.

Our understanding and definition of participatory research draws upon the work of Cornwall and Jewkes (1995). The basis of difference for participatory techniques in contrast to other qualitative research methods remains on the attention to the location of power within the stages of research, as well as a focus on knowledge for action or knowledge translation. This manifests in “who defines research problems, and who generates, analyses, represents, owns and acts on the information” focussing on the process rather than the results (Cornwall & Jewkes, 1995: 1668). They distinguish four modes of participation from shallow to deep: contractual; consultative; collaborative and collegiate as follows:

1. Contractual if researchers largely initiated, designed recruited, collected, analysed and disseminated the research findings themselves;

2. Consultative if researchers consulted participant communities as part of initiation and design processes;

3. Collaborative if researchers and participant communities worked together on the initiation, design, and management of the research processes; and

4. Collegiate if researchers and participant communities worked together as colleagues with different skills to offer, in a process of mutual learning where the community had control over research processes.

While modes 2-4 have varying levels of participatory involvement of participatory communities, contractual research (mode 1 in the list above) does not have any reciprocal engagement in the priority setting or conduct of research, and thus should not be considered ‘participatory’ in the Cornwall and Jewkes (1995) sense.

As is clear from these four modes, participatory research requires consideration to be given to each of the seven distinct stages of research (Brancati, 2018). Figure 1 outlines these stages, including how participatory research might occur in each of the stages.

Figure 1.

The seven stages of research.

In this paper, we drew upon Cornwall and Jewkes’ (1995) four modes to examine the existing literature involving researcher-identified ‘participatory’ research on dementia, with attention paid to each of the seven stages shown in Figure 1.

Methods

Literature Searches

Between 16 June and 23 July 2021, five databases and Google Scholar were searched with the assistance of a specialist librarian. Our search strategy consisted of the following terms: {“participatory methods” and “dementia”} or {“Participatory activities with dementia patients”}. Table 1 outlines the searches that were conducted, the databases searched, and the results obtained. It also outlines the number of articles that were included in the analysis after title screening during which 96 duplicate articles were removed.

Table 1.

Literature Search Strategy.

Database with specific details	Dates searched	Search terms used	Initial results	Items included
ProQuest All available indexes Limits: English language	2010–2021	Participatory methods AND dementia Advanced search, field codes: Anywhere except full text (NOFT)	125 titles	47 articles
OVID medline (R) all Most expansive medline (national library of medicine) search No limits applied	2010–2021	(Participatory methods) AND “dementia” Field codes: All fields	1 title	1 article
Scopus Limits: English language, articles	2010–2021	“Participatory methods” AND dementia Field codes: All fields	76 titles	62 articles
Web of science - all databases	2010–2021	“Participatory methods” AND dementia Field codes: All fields	5 titles	2 articles
International bibliography of social sciences (IBSS) No limits applied	2010–2021	Participatory methods AND dementia Advanced search, field codes: Anywhere except full text (NOFT)	7 titles	6 articles

Screening Process and Data Reduction

First, we undertook screening of titles and abstracts, before proceeding to full-text screening. After the title screening, 126 relevant articles were included for further analysis. During this process, three major trends were identified:

- Articles that claimed to have a participatory design typically involved stakeholders, including caregivers or family members, in addition to or instead of the people living with dementia themselves; these articles emphasised community involvement.

- Focus groups, guided interviews, surveys and observations were the main qualitative research methods used for data collection.

- Approximately half of the studies were described as co-research or co-design for the purpose of developing apps or other products for use by PLWD. Research methods comprised testing the products with PLWD.

- Following the screening process, additional duplicate articles were identified. Of the remaining 92 articles, 58 were excluded because they were conference papers, dissertations, or reviews, and/or did not include any primary data from PLWD (Figure 1).

Many articles were excluded for multiple reasons, which are summarised in Table 2 below. Due to our interest in the inclusion of people with dementia (PLWD) as primary participants, a significant number of the excluded articles (n = 42, across multiple exclusion categories from Figure 1) did not include PLWD as research participants. This led to a further finding that most research on dementia consults with caregivers, community workers, nurses or other health staff rather than PLWD. Much of the identified research employed a contractual or extractive methodological approach, as per Cornwall and Jewkes’ (1995) definition, rather than any level of participatory methods. Contractual research occurs where researchers initiate, design, recruit, analyse and disseminate their research findings without the participation of people with dementia beyond the provision of data as study ‘participants’ (Cornwall & Jewkes, 1995). Therefore, we did not consider contractual research as participatory, and it was excluded from this study Figure 2.

Table 2.

Summary of Exclusion Reasons *.

Exclusion reason	Number of excluded articles (n = 91) *
Contractual research	48
No people with dementia involved in the study, either as co-researchers or study participants	42
No use of participatory methods	18
Review article	16
Quantitative study only	10
Observations of people with dementia only – no participation	5
Dissertation only	8
Conference paper	4

Note. Some articles fell into multiple exclusion categories.

Figure 2.

Flow diagram of screening process (via ShinyApp by Haddaway et al., 2022).

Full-Text Screening

The 34 included articles were subjected to further rigorous analysis to understand the level of participation of PLWD that was apparent by asking seven questions:

1. Was the research initiated by or with participants?

2. Was the research designed by or with participants?

3. Was the recruitment done by or with participants?

4. Were the data collected by or with participants?

5. Were the data analysed by or with participants?

6. Were the data validated by or with participants?

7. Were findings disseminated or acted on by or with participants?

The seven inquiry questions were used as an analytical tool with which to categorise the research processes into the scale of (1) Contractual; (2) Consultative; (3) Collaborative or (4) Collegiate (as shown in Table 3 below).

Table 3.

Scoring System Used (Based on Cornwall & Jewkes, 1995).

Score given	1 point	2 points	3 points	4 points
Score interpretation	Researchers only	Researchers with some input from the community, partner organisations, or key stakeholders. PLWD may play a minor or passive role	Co-production or personalised strategies used in data collection or study design – for example, where co-design workshops were used to inform a particular stage of research	Co-research approaches where PLWD were included as (near-to) equal partners in this aspect of the research process
Alignment with Cornwall & Jewkes’ (1995) participatory schema	Contractual	Consultative	Collaborative	Collegiate
Working definition	Researchers initiate, design, recruit, collect, analyse and disseminate findings without active participation of PLWD in the research process (i.e. they are involved as study participants – providers of data - only)	Researchers consulted participant communities as part of the research initiation and design process	Where researchers and participant communities worked together on the initiation, design, and management of the research process	Where researchers and participant communities worked together as colleagues with different skills to offer, in a process of mutual learning where the community had control over research processes

Data Analysis: Text Review and Scoring Approach

To determine the inclusion of articles into our final analysis, we developed a scoring system as explained in Table 3 below. Contractual and consultative scores were deemed as low levels of participation while collaborative or collegiate scores were deemed as high levels of participation. We reviewed the description of research methodologies in each of the 34 articles for participatory methodology according to the seven questions evaluating the seven stages of research (conception; design; participant recruitment and data collection; analysis and validation; and knowledge translation as outlined in Figure 1 above) and awarded 0–4 points according to the following scale. Any article receiving less than a score of 7 was judged as not achieving a level of participation considered valid and removed from the analysis.

Data were then subject to an anthropological thematic analysis. This involved the generation of both inductive and deductive codes as above (Markovic, 2006), with the latter deemed necessary given our use of the Cornwall and Jewkes (1995) scale. Two of the authors each analysed half of the data set and then discussed the identified categories to ensure coherence in understanding of codes and their application. Each read and analysed the research methods described according to the principles in Table 3. Each research stage was categorised as one of the four and awarded that score. All research stages marked ‘3’ for instance were identified as ‘researchers and participant communities worked together on the initiation, design, and management of the research processes’ at that particular stage of research. This was supported by the development of a coding dictionary which sought to clearly define each code. The coding approach was supported by a team-developed code book, which included definitions of codes and examples (following Giesen & Roeser, 2020). This reflexive process was revisited throughout the analytic process (Braun & Clarke, 2021). The analysis approach was collaborative, following anthropological methodological approaches (the team members’ primary discipline): each coder read over the other’s coding and sought clarification in the few instances where this was required. This led to minor clarifications in the coding guide and ensured rigour in the analysis process (Doos and Wilhelmson, 2012). In so doing, a flexible and iterative approach to thematic analysis was developed. These codes were then shared these with the remaining authors for the purposes of interpretation and dissemination.

Findings: Examining the Level of Participation by Research Stage

Table 4 shows the final participatory ranking for each of the remaining 27 articles included in the final analysis. Although all studies are considered ‘participatory’, the extent to which this occurred varied considerably. The articles, listed by authors and date, are ranked in the Table from the most to the least participatory.

Table 4.

Analysis of Selected Studies Participatory Approaches by Research Stage and Rank.

n	Article details	Concept	Design	Recruit	Data collect	Data analysis	Data validation	Disseminate	Participate level
1	Thoft et al., 2020	4	4	4	4	4	4	4	28
2	Frank et al., 2020	3	3	2	4	4	4	4	24
3	Subramaniam & Woods, 2016	1	4	2	4	4	4	4	23
4	Hendriks et al., 2018	1	4	3	4	3	3	4	22
5	McConnell et al., 2019	3	3	3	3	2	3	3	20
6	Branco et al., 2016	1	3	3	3	3	3	3	19
7	Mondaca et al., 2019	1	4	3	3	2	3	3	19
8	Tanner, 2012	1	4	2	4	4	4	0	19
9	Li & Ho, 2019	1	3	2	3	3	3	3	18
10	Watchman et al., 2021	1	3	2	3	2	2	4	17
11	Lindsay et al., 2012	1	2	2	3	2	3	3	16
12	Asghar et al., 2020	1	2	2	3	1	2	3	14
13	Kuske et al., 2021	3	2	2	3	2	2	0	14
14	Shadarevian et al., 2020	1	1	2	3	2	2	3	14
15	Tsekleves et al., 2020	1	3	2	3	2	0	3	14
16	Thoolen et al., 2020	1	2	1	2	2	2	3	13
17	Clarke et al., 2018	1	1	2	0	3	3	2	12
18	Martin et al., 2013	1	1	1	2	1	2	2	10
19	Tobiasson et al., 2015	1	2	1	2	1	1	2	10
20	Meiland et al., 2012	1	1	2	2	1	0	2	9
21	Bartlett et al., 2019	1	1	2	3	2	0	0	9
22	Hendriks et al., 2017	1	1	1	2	1	0	2	8
23	Smith et al., 2021	1	2	1	2	1	0	1	8
24	Treadaway & Kenning, 2016	1	1	1	2	1	2	0	8
25	Span et al., 2015	1	1	2	2	1	0	0	7
26	Li et al., 2021	1	1	2	2	1	0	0	7
27	Nomura et al., 2009	1	1	2	2	1	0	0	7
TOTAL for research phase		36/108	60/108	54/108	73/108	56/108	52/108	58/108	389/756

In further unpacking those articles that met the ‘high participation’ criteria (i.e. they were deemed to use collegiate or collaborative approaches in any one of the seven research phases), it became clear that some stages of research were more participatory than others. As shown in Table 4 (above), data collection (with a total of 73/108) and design (a total of 60/108) were the research stages where a participatory approach was strongest. However, in the Figure 3 below we can see that while Data Collection was again the research stage where most participatory research was accomplished--(40%) at collaborative level combined with 19% at the higher collegiate level—in the dissemination of findings stage there was a also a high level of participation. In contrast, the lowest levels of participatory approaches were found in the conception of the study (total of 36/108), recruitment (total of 54/108) and data validation (52/108); these predominantly employed processes of collaboration, rather than the higher collegial participation as shown in Figure 3. These findings and the extent to which these trends reflect specific challenges related to dementia is explored in greater detail below.

Figure 3.

Collaborative and collegiate methods by research stage.

Research Initiation and Conception

Of the selected 27 studies, only 15% (4) of the articles achieved a level of collaborative participation or above, and only one achieved collegiate levels of participation at the research initiation and conception stage. Often, the main researchers initiated and conceptualised the research, as very few projects had PLWD included at this stage. The single study using collegial methods in this stage (Thoft et al., 2020) ensured that PLWD oversaw the conception and design of the project by first training them to become researchers, and by then encouraging and empowering participants to then design their projects in the ways that they (the PLWD) saw fit. This was done by relinquishing control of the conception of the project to the participants, which ensured that PLWD became co-researchers and co-producers of knowledge.

Research Design

In the research design stage, 41% (11) of studies achieved a level of collaborative participation or above, with 19% (5) of articles achieving collegiate levels of participation. Articles by Thoft et al. (2020), Subramaniam and Woods (2016), Hendriks et al. (2018), Mondaca et al. (2019) and Tanner (2012) exemplified how PLWD were able to design research in an extremely participatory way. Thoft et al. (2020) allowed participants with dementia to establish the goals of the research, what methods of data collection would be used, how they would recruit participants and where the research would be carried out.

Alternative or creative study approaches also shaped higher levels of participation. Participants in the study by Subramaniam and Woods (2016) were able to design their own digital storybooks, so a creative output facilitated high levels of participation at the research design stage. Here, PLWD decided what methods to use and how to present and analyse the information about their lives that they wanted to showcase, using pictures, videos, narration by family members or themselves. Some used song that they felt would capture a moment or express their thoughts and feelings about a particular topic. On a similar note, Hendriks et al. (2018) paired a researcher with a PLWD and together they designed the most appropriate way to develop a story poster for their caregivers and family members. As with Subramaniam and Woods (2016), here the creative component of the research facilitated a more participatory approach to research design. Mondaca et al. (2019) also invited participants to design their own creative participatory activity. A creative book club at a nursing home was chosen by PLWD during the research design stage and was effectively delivered, following the directions of the participants with the support from the main researchers and caregivers from the nursing home. Finally, Tanner (2012) used co-research methods to enable PLWD to actively participate in the design of the research methods, allowing them to establish how and where the research would be carried out.

Participant Recruitment

When it came to participant recruitment, very few studies included PLWD at this stage of the research. As a matter of fact, only 19% (5) of articles achieved a level of collaborative participation or above, with only one managing to achieve collegiate levels of participation. Generally, researchers used existing NGOs, healthcare services or medical practitioners to recruit the participants, with PLWD being consulted mostly to recruit carers or family members. It was only in Thoft et al. (2020) that PLWD were trained to carry out their own recruiting of participants for their study. These researchers emphasised that their existing relationships and provision of a setting that was familiar to PLWD (in this case, the Adult School Voksenskolen for Kommunikation og Undervisning (VUK) in Denmark) and their participants helped in achieving collegiate levels of participation at this stage: the PLWD researchers recruited their participants with dementia from the very same school they attended. As the researchers stated, ‘VUK was selected as the setting because it allowed collaboration with participants who knew each other in advance in an environment well-known to them’ (Thoft et al., 2020). It is important to highlight that this familiarity was vital to ensure that collegiate participation during the recruitment stage was achievable. Familiarity with other PLWD as well as the chosen setting are of particular importance for those experiencing dementia, as it can help mitigate any issues brought about by cognitive decline and it reinforces a feeling of safety and control of those involved.

Data Collection

Data collection was the research stage that achieved the highest participation levels. The majority of articles (59%, or 16) achieved collaborative participation or above, with 19% (5) of articles managing to achieve collegiate levels of participation. In the data collection phase of the research 59% or 16 articles was judged to have achieved a collaborative (researchers and participant communities worked together on the initiation, design, and management of the research process) standard. While different processes were undertaken in each project they were classified as having reached this threshold of collaboration between researchers and participants.

Thoft et al. (2020), for example, saw PLWD co-researchers carrying out semi-structured interviews from other participants with dementia. Frank et al. (2020) used meetings and focus group discussions for a group of PLWDs to provide inputs for the agenda of the 2017 Research Summit on Dementia Care in the United States. Subramaniam and Woods (2016) used a set of questionnaires and semi-structured interviews to encourage PLWD to explain how they would like to create their own multimedia digital life storybooks to engage in reminiscence work. Hendriks et al. (2018) used creative play methods such as roleplay, storytelling, and reflections to encourage participants with late-stage dementia to design their own creative story posters for caregivers and family members. Finally, in Tanner (2012), PLWD acted as co-researchers and carried out their own interviews with other participants with dementia.

In summary, because participatory methodologies were chosen to carry out the data collection, PLWD were able to adopt a more prominent role and become more involved in decision-making about what information was obtained and how it was gathered. In other words, because PLWD are the owners of the knowledge, it becomes easier to achieve collaborative or collegiate levels of participation to enrich the quality of the data collection process. While most studies utilised standard data collection techniques like surveys, focus groups, and semi-structured interviews, there was an element of creativity to most that enabled and encouraged participants to take control of the data collection process. A clear example is Hendriks et al. (2018) and its use of creative play in order to engage participants with late-stage dementia.

Data Analysis

At the data analysis stage, 30% (8) of articles achieved collaborative levels of participation or above, with 15% (4) managing to achieve collegiate levels of participation. Thoft et al. (2020) saw co-researchers with dementia analyse the themes that emerged from the interviews they had carried out. The main researchers only acted as facilitators, while full control over the analysis stage was given to PLWD. Frank et al. (2020) also supported PLWD to analyse how their intervention and participation in the planning of the 2017 Summit had helped enrich their experience and, as a result, were able to establish what the best practices should be to include PLWD in this type of activity in the future. Subramaniam and Woods (2016) saw PLWD, their caregivers and the researchers jointly looking and analysing the data that had been gathered in the previous stages. While PLWD were not the sole participants in charge of data analysis, their opinions were encouraged and validated, with researchers and caregivers acting as facilitators and encouraging PLWD to express their views regarding the findings from the data collection stage. Tanner (2012) saw three co-researchers with dementia determine what themes they identified from the resulting interviews they had carried out with other PLWD. Once again, the main researchers took a role as a facilitator at this stage and full control over the analysis was given to the PLWD.

It should be noted that while more articles achieved higher levels of participation than at the recruitment or conception stages, the levels of participation at the data analysis stage were still not as high as one might expect. In most cases, researchers expressed reluctance or challenges to include PLWD in the analysis of the data, citing concerns about their cognitive abilities or a lack of confidence (or unwillingness) from participants.

Data Validation

At the data validation stage, 40% (11) of articles achieved collaborative levels of participation or above, with 15% (4) of articles managing to achieve collegiate levels of participation. Thoft et al. (2020) encouraged the group of co-researchers with dementia to validate whether the information gathered and analysed at the data collection and analysis stages were credible (accurate). This was done through focus groups and meetings, with the researchers acting as facilitators to achieve consensus. Frank et al. (2020) also included meetings between the organisers of the 2017 Summit and the PLWD group to discuss what their findings had been. This led the PLWD group to decide to present their findings at the very summit they helped organise. Once again, researchers acted as facilitators, and encouraged the PLWD when they first mentioned presenting the findings to a wider audience. Subramaniam and Woods (2016) used semi-structured interviews once the project was completed to obtain feedback from PLWD and to corroborate whether the final product was indeed what the PLWD had been expecting. For Tanner (2012), the main researchers acted as facilitators and validated the data that had been obtained from the data collection and analysis stages to achieve consensus.

In most instances, researchers corroborated whether the PLWD agreed (or disagreed) with the researcher(s)’ analysis and why. In the articles with collegiate levels of participation, the PLWD were in charge of validating their own findings with researchers and participants. In these studies, PLWD were asked to take the lead and were thus given the final word in terms of how and what data was presented to the wider public.

Dissemination of Findings and Knowledge Transfer

When it came to the dissemination of findings and knowledge transfer, 52% (14) of articles achieved collaborative levels of participation or above, with 19% (5) of articles managing to achieve collegiate levels of participation. Findings were disseminated either through creative outputs or through more traditionally academic pathways. For Subramaniam and Woods (2016) and Hendriks et al. (2018), creative outputs resulted from the research methods of their studies. In Subramaniam and Woods (2016), each PLWD retained their own personalised ‘Life Story Movie’, which they had designed and validated. Similarly, Hendriks et al. (2018) showcased an individualised ‘Story Poster’ of each PLWD that could be conveniently shown to caregivers or family members to help the PLWD engage in reminiscence work.

In contrast, for Thoft et al. (2020), Frank et al. (2020) and Watchman et al. (2021), PLWD disseminated their own findings in more traditional academic ways and adapted them as they saw fit. For example, participants in Thoft et al. (2020) decided to disseminate their findings through their adult school (VUK) and through local press articles. For Watchman et al. (2021), co-researchers facilitated a Dementia Conference for peers and delivered presentations with their findings at international conferences, as well as producing an accessible summary to further disseminate findings. Participants in Frank et al. (2020) wrote a paper which they then presented at the 2017 Research Summit on Dementia Care. These findings were not only welcomed by other researchers and medical practitioners at the summit, but it also managed to demonstrate that participatory research with PLWD is possible and can lead to valuable findings while empowering participants.

Discussion: Emerging Themes

It was evident from our analysis that achieving high or collegiate levels of participation in research with PLWDs was rare. Studies which described methodology as ‘participatory’ when rigorously assessed were most often found to be superficial in engaging with PLWD. Genuine participatory or collegiate research remains rare with most research continuing to be researcher or scientist led. Upon analysis, the participatory method referred to was part of the data collection stage of research and reflected limited levels of active participation. The extent to which some stages of research were more participatory than others and reflect specific challenges related to dementia (e.g., impacts on attention or memory) is discussed below.

Some of the main reasons for limited engagement with PLWD participants are common roadblocks encountered in most participatory research. Time limitations, both for relationship-building which is integral to a participatory approach as well as for the duration of the research process itself. Building sustainable relationships is an important part of the participatory process, in terms of ensuring more equitable power relations as well as to ensure the quality of the research (Ahmed & Palermo, 2010). As Field et al. (2019) found, project timelines when working with PLWD often blew out, due to significant periods of ill-health, other priorities, and delays in recruitment. It is evident that the papers which reported the highest levels of participation were able to overcome these barriers by leveraging established and longer-term relationships to support greater involvement of PLWD in more stages of the research (e.g., Frank et al., 2020; Thoft et al., 2020).

Like time constraints, funding constraints, that did not permit longer-term projects or larger sample sizes, may have been significant in hampering researchers’ efforts to include PLWD participants in a more meaningful way (see Cargo & Mercer, 2008). That those studies which successfully used participatory methods with PLWD, have unique characteristics and considerations for research, typically had relatively small samples which may also underscore the difficulties in obtaining funding for participatory research.

Methodological considerations were both an opportunity for and a barrier to participation. Studies that employed creative approaches reported high levels of participation throughout the research process (Hendriks et al., 2018; Subramaniam & Woods, 2016). The capacity to adapt methods to respond to unique requirements of the community or context could not only enhance research but, conversely, could create further demands on research timelines, including those associated with ethics-related delays (Field et al., 2019; Strike et al., 2016). That said, most studies did not mention reasons why the participation of PLWD was limited, especially considering their description of the research as “participatory”. It would be interesting to investigate this further, as it remains unclear whether a failure to mention existing constraints or limitations were due to a perceived lack of importance or whether the researchers believed that their project had adequate levels of participation. In addition, the extent to which these trends reflect specific challenges related to dementia (e.g., impacts on attention or memory) requires further articulation.

Nevertheless, several articles as set below specifically referred to the reasons why they were not (or could not) be as participatory as they had originally intended. Four key issues were identified during our analysis, which we discuss below.

Perceptions of Cognitive Decline

Several articles highlighted that impaired cognition associated with dementia impeded their research from becoming more participatory, due to challenges with obtaining informed consent or capacity to understand the research processes (Span et al., 2015; Tobiasson et al., 2015; Smith et al., 2021; also see Dewing, 2007). However, this claim relied on assumptions that were debunked by several of the more collegiate articles that we analysed, where processes of consent were established that considered the cognitive needs of the participants. Given the biomedical focus of the studies that found cognitive impairment constrained deeper participation, there is a need to separate personal or professional bias from the existing constraints. It is undeniable that issues surrounding cognitive impairment can certainly add an extra layer of complexity to conducting participatory research, however, accommodations can be made as illustrated by Thoft et al. (2020), Frank et al. (2020) and Subramaniam and Woods (2016). Thoft et al. (2020) ensured that the PLWD were trained and encouraged to design and create their own project within a familiar setting and with colleagues that were previously known to them. This helped mitigate any sense of disengagement, disempowerment, and isolation that could have arisen from designing and implementing a research project with strangers in an unfamiliar setting.

Participants’ Willingness to Participate

Participants’ willingness to fully participate was also mentioned as a reason why some projects or stages were not as participatory as intended. Researchers stated that they were entrusted by participants to take the reins of several stages, as participants felt themselves to be unfit to carry out the work of the project (Asghar et al., 2020). This was particularly the case in the project design and data analysis phases. Participants in Asghar and colleagues’ (2020) study described feeling insecure, unprepared, and/or uncomfortable about taking on the role of the researcher. They also mentioned finding the nuances of research as too tedious which would lead to them to disengage, so researchers intervened to ensure the project could be completed.

These findings resonate with the research process reported by Field et al. (2019), who found that their PLWD participants reported delays to participation; they argue that participants’ reluctance to take part in research can be enhanced by allowing greater time for recruitment (also see Beattie et al., 2018). Indeed, Yee and colleagues (2019) found that people with dementia expressed an interest being involved in some forms of research – but this required tailored engagement strategies that responded to their cognitive and health status.

Ethics Committees

Ethics committees were also considered a limiting barrier to levels of participation with PLWD. The NHS Ethics Committee was specifically mentioned as one unable to be convinced of the ability of PLWD to fully consent to becoming researchers. In other words, some studies faced limitations in what role PLWDs could take based on paternalistic approaches of ethics committees regarding the cognitive abilities and ability to consent from PLWD.

Ethical approval processes present a major consideration in designing any research involving people with dementia and appears a particular challenge for participatory research approaches. To address this, considerable efforts have sought to establish a set of guiding ethical considerations to better support PLWD in research, including process consent procedures (e.g., McKeown et al., 2010) or making ‘reasonable adjustments’ to research protocols (see Northway et al., 2015). Indeed, West et al. (2017) sought to outline core pillars for a ‘coherent ethical strategy’, with a particular attention to balancing the vulnerabilities (real or perceived) of PLWD with agentic considerations in the consent process.

Because PLWD are considered high-risk participants, especially when speaking of consent, it is important to note that differences in ethics committee’s standards and due processes might affect the ability to conduct truly participatory research with PLWD. This is especially the case when considering international or multiagency research projects that might need to go through different ethics committees, each of which comes with its own values, criteria, and interpretations of core ethical principles.

Settings

The importance of choosing an adequate setting when carrying out research with PLWD was a common theme in many articles reviewed. Those least participatory were usually constricted to a hospital ward or other institutional setting, which the researchers themselves acknowledged was not the most conducive for participatory research. In these sites, participants were usually disoriented and unfamiliar with the place, which made it difficult for them to focus on the activities – all of which are common challenges for people with dementia. While some researchers emphasised the positive benefits of participatory activities in clinical settings, they also noted that interruptions were common, as there was no assigned physical space for the research to be conducted, which led to frequent interruptions and distractions among participants. It was also hard to establish a routine, as researchers had to adapt to the hospital needs, often having to cancel or reschedule the activities at the very last minute. It was also common for medical staff to take participants out for medical check-ups or other procedures while the activity was taking place, which again interrupted the flow of the research activity and made consistent participation an even harder task.

In contrast, the research projects that were deemed to be more successful in their participatory efforts were usually conducted in common, familiar spaces that were allocated specifically for the participatory activities, with the intention to minimise disruption as much as possible. Being in a familiar setting seemed to empower those participants, though it should also be noted that those participants that were more likely to actively participate were those who already carried out some participatory activities outside of the research project (e.g., activists as in Frank et al., 2020). Therefore, it would be important to consider whether more participatory research with PLWD can only be achieved with those who already are active in the community, further exacerbating the social isolation of other more marginal PLWD. In other words, it is important to consider whether achieving high levels of participation in research with PLWD should come at the cost of not including those PLWD who are isolated, unable or initially unwilling to actively participate in research or activism.

Conclusion

In this review, we have identified key factors that positively contribute to the inclusion of PLWD in participatory research. These include pre-existing and/or longer-term relationships with either the research partners or other participants, which likely relies upon sufficient institutional, temporal, and financial support for the research. Secondly, building expected delays into participatory research protocols. Thirdly, conducting research in settings that are familiar or comfortable for PLWD participants. Fourthly, recognising that, while dementia presents some unique challenges to participation, these can be addressed through careful adaptive study designs. Lastly, working with ethics committees to ensure that the vulnerability of participants is not increased through their involvement in the research process. Each of these elements is essential to the ethos of a participatory approach.

Our identification of the four main barriers (perceptions of cognition, willingness to participate; ethics committees and settings) suggests a tension between concern for participants’ welfare and control over the research processes, which was more apparent in the biomedical literature. Importantly, control should not be more important or override concern and become paternalistic. Concern instead should lead to more engaged and appropriate research methods and aim to achieve the foundational principle of participatory research, empowerment. Participatory methods for PLWD need to be grounded in empowerment, otherwise PLWD will be seen as incapable and/or will not have necessary confidence to carry out the research. Empowering participatory approaches are the best method for the creation of new knowledge and findings that can be translated into effective recommendations and action, to improve the lives of people living with dementia.

Supplemental Material

Supplemental Material - Evaluating the Extent of Participation of People Living With Dementia in Research

Evaluating the Extent of Participation of People Living With Dementia in Research by Sara Niner, Felicitas Bran, Devi Mohan, and Narelle Warren in International Journal of Qualitative Methods

Footnotes

Author Note

Proposed paper for Special Issue ‘Creative Approaches to Qualitative Dementia Research’ The International Journal of Qualitative Methods:

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 work was supported by the Australian Research Council (DP200102224).

ORCID iDs

Sara Niner

Felicitas Bran

Supplemental Material

Supplemental material for this article is available online.

References

Ahmed

S. M.

Palermo

A. G.

(2010). Community engagement in research: Frameworks for education and peer review. American Journal of Public Health, 100(8), 1380–1387. https://doi.org/10.2105/AJPH.2009.178137

Alzheimer’s Society . (2022). The progression, signs and stages of dementia. https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/progression-stages-dementia

Asghar

Cang

(2020). The impact of assistive software application to facilitate people with dementia through participatory research. International Journal of Human-Computer Studies, 143, 1–10. https://doi.org/10.1016/j.ijhcs.2020.102471

Bartlett

Milne

Croucher

(2019). Strategies to improve recruitment of people with dementia to research studies. Dementia, 18(7-8), 2494–2504. https://doi.org/10.1177/1471301217748503

Beattie

Fielding

O'Reilly

Brooks

MacAndrew

McCrow

(2018). Recruitment of individuals with dementia and their carers for social research: Lessons learned from nine studies. Research in Gerontological Nursing, 11(3), 119–128. https://doi.org/10.3928/19404921-20180308-01

Brancati

(2018). Social scientific research. Sage Publications.

Braun

Clarke

(2021). One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology, 18(3), 328–352. https://doi.org/10.1080/14780887.2020.1769238

Cargo

Mercer

S. L.

(2008). The value and challenges of participatory research: Strengthening its practice. Annual Review of Public Health, 29(1), 325–350. https://doi.org/10.1146/annurev.publhealth.29.091307.083824

Cornwall

Jewkes

(1995). What is participatory research? Social Science and Medicine, 41(12), 1667–1676. https://doi.org/10.1016/0277-9536(95)00127-S

10.

Cotrell

Schulz

(1993). The perspective of the patient with alzheimer's disease: A neglected dimension of dementia research. The Gerontologist, 33(2), 205–211. https://doi.org/10.1093/geront/33.2.205

11.

Dewing

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

12.

Döös

Wilhelmson

(2014). Proximity and distance: Phases of intersubjective qualitative data analysis in a research team. Quality and Quantity, 48, 1089–1106. https://doi.org/10.1007/s11135-012-9816-y

13.

Field

Mountain

Burgess

Di Bona

Kelleher

Mundy

Wenborn

(2019). Recruiting hard to reach populations to studies: Breaking the silence: An example from a study that recruited people with dementia. BMJ Open, 9(11), e30829–e30836. https://doi.org/10.1136/bmjopen-2019-030829

14.

Frank

Shubeck

Schicker

Webb

Maslow

Gitlin

Hummel

C. H.

Kaplan

E. K.

LeBlanc

Marquez

Nicholson

B. P.

O’Brien

Phillips

Van Buren

Epstein-Lubow

(2020). The experiences of persons living with dementia planning for a dementia research meeting. Lessons learned from the national research summit on care, services, and supports for persons with dementia and their caregivers. American Journal of Geriatric Psychiatry, 28(4), 434–442. https://doi.org/10.1016/j.jagp.2019.10.015

15.

Giesen

Roeser

(2020). Structuring a team-based approach to coding qualitative data. International Journal of Qualitative Methods, 19. https://doi.org/10.1177/1609406920968700

16.

Haddaway

N. R.

Page

M. J.

Pritchard

C. C.

McGuinness

L. A.

(2022). PRISMA2020: An R package and Shiny app for producing PRISMA 2020-compliant flow diagrams, with interactivity for optimised digital transparency and Open Synthesis. Campbell Systematic Reviews, 18(2), e1230. https://doi.org/10.1002/cl2.1230

17.

Hendriks

Huybrechts

Slegers

Wilkinson

(2018). Valuing implicit decision-making in participatory design: A relational approach in design with people with dementia. Design Studies, 59, 58–76. https://doi.org/10.1016/j.destud.2018.06.001

18.

Hydén

L. C.

(2014). Cutting Brussels sprouts: Collaboration involving persons with dementia. Journal of Aging Studies, 29(1), 115–123. https://doi.org/10.1016/j.jaging.2014.02.004

19.

Hydén

L. C.

Nilsson

(2015). Couples with dementia: Positioning the ‘we. Dementia, 14(6), 716–733. https://doi.org/10.1177/1471301213506923

20.

Kuske

Borgmann

S. O.

Wolf

Bleck

(2021). Emotional safety in the context of dementia: A multiperspective qualitative study. Journal of Alzheimer’s Disease, 79(1), 355–375. https://doi.org/10.3233/JAD-201110

21.

Lepore

Shuman

S. B.

Wiener

J. M.

Gould

(2017). Challenges in involving people with dementia as study participants in research on Care and services [background paper]. 2017 national research summit on Care, services and supports for persons with dementia and their caregivers. https://aspe.hhs.gov/reports/challenges-involving-people-dementia-study-participants-research-care-services-0

22.

B. Y.

R. T. H.

(2019). Unveiling the unspeakable: Integrating video elicitation focus group interviews and participatory video in an action research project on dementia care development. International Journal of Qualitative Methods, 18. https://doi.org/10.1177/1609406919830561

23.

Keady

Ward

(2021). Transforming lived places into the connected neighbourhood: A longitudinal narrative study of five couples where one partner has an early diagnosis of dementia. Ageing and Society, 41(3), 605–627. https://doi.org/10.1017/S0144686X1900117X

24.

Lindsay

Brittain

Jackson

Cassim

Ladha

Olivier

(2012). Empathy, participatory design and people with dementia. [Proceedings of the SIGCHI conference on human factors in computing systems (CHI '12)] (pp. 521–530): Association for Computing Machinery. https://doi.org/10.1145/2207676.2207749

25.

Markovic

(2006). Analyzing qualitative data: Health care experiences of women with gynecological cancer. Field Methods, 18(4), 413–429. https://doi.org/10.1177/1525822X06293126

26.

Martin

Augusto

J. C.

McCullagh

Carswell

Zheng

Wang

Wallace

Mulvenna

(2013). Participatory research to design a novel telehealth system to support the night-time needs of people with dementia: Nocturnal. International Journal of Environmental Research and Public Health, 10(12), 6764–6782. https://doi.org/10.3390/ijerph10126764

27.

McConnell

Sturm

Stevenson

McCorry

Donnelly

Taylor

Best

B. J.

(2019). Co-producing a shared understanding and definition of empowerment with people with dementia. Research Involvement and Engagement, 5(1), 19–19. https://doi.org/10.1186/s40900-019-0154-2

28.

McKeown

Clarke

Ingleton

Repper

(2010). Actively involving people with dementia in qualitative research. Journal of Clinical Nursing, 19(13-14), 1935–1943. https://doi.org/10.1111/j.1365-2702.2009.03136.x

29.

Mondaca

Josephsson

Borell

Katz

Rosenberg

(2019). Altering the boundaries of everyday life in a nursing home context. Scandinavian Journal of Occupational Therapy, 26(6), 441–451. https://doi.org/10.1080/11038128.2018.1483426

30.

Nomura

Makimoto

Kato

Shiba

Matsuura

Shigenobu

Ishikawa

Matsumoto

Ikeda

(2009). Empowering older people with early dementia and family caregivers: A participatory action research study. International Journal of Nursing Studies, 46(4), 431–441. https://doi.org/10.1016/j.ijnurstu.2007.09.009

31.

Northway

Howarth

Evans

(2015). Participatory research, people with intellectual disabilities and ethical approval: Making reasonable adjustments to enable participation. Journal of Clinical Nursing, 24(3-4), 573–581. https://doi.org/10.1111/jocn.12702

32.

Shadarevian

Chan

Berndt

Son

Gregorio

Horne

Mann

Wallsworth

Chow

O’Neill

Hung

(2020). Creating a toolkit with stakeholders for leveraging tablet computers to support person-centred dementia care in hospitals. Journal of Rehabilitation and Assistive Technologies Engineering, 7, 2055668320960385–2055668320960389. https://doi.org/10.1177/2055668320960385

33.

Smith

S. K.

Innes

Bushell

(2021). Music‐making in the community with people living with dementia and care‐partners – ‘I’m leaving feeling on top of the world. Health and Social Care in the Community, 30(1), 114–123. https://doi.org/10.1111/hsc.13378

34.

Soofi

(2022). Ethical aspects of facilitating the recruitment of people with dementia for clinical trials: A call for further debate. British Journal of Clinical Pharmacology, 88(1), 22–26. https://doi.org/10.1111/bcp.14968

35.

Span

Smits

Jukema

Groen-van de Ven

L. M.

Janssen

Vernooij-Dassen

M. J. F. J.

Eefsting

Hettinga

(2015). An interactive web tool for facilitating shared decision-making in dementia-care networks: A Field study. Frontiers in Aging Neuroscience, 7, 128–128. https://doi.org/10.3389/fnagi.2015.00128

36.

Strike

Guta

de Prinse

Switzer

Carusone

S. C.

(2016). Opportunities, challenges and ethical issues associated with conducting community-based participatory research in a hospital setting. Research Ethics, 12(3), 149–157. https://doi.org/10.1177/1747016115626496

37.

Subramaniam

Woods

(2016). Digital life storybooks for people with dementia living in care homes: An evaluation. Clinical Interventions in Aging, 11, 1263–1276. https://doi.org/10.2147/CIA.S111097

38.

Tanner

(2012). Co-research with older people with dementia: Experience and reflections. Journal of Mental Health, 21(3), 296–306. https://doi.org/10.3109/09638237.2011.651658

39.

Thoft

D. S.

Pyer

Horsbøl

Parkes

(2020). The Balanced Participation Model: Sharing opportunities for giving people with early-stage dementia a voice in research. Dementia, 19(7), 2294–2313. https://doi.org/10.1177/1471301218820208

40.

Thoolen

Brankaert

R. G. A.

(2020). Designing sentic: Participatory design with people living with dementia. HCI and Design in the Context of Dementia. (pp. 269–288). Springer.

41.

Tobiasson

Sundblad

Walldius

Å.

Hedman

(2015). Designing for active life: Moving and being moved together with dementia patients. International Journal of Design, 9(3), 47–62. https://www.ijdesign.org/index.php/IJDesign/article/view/1886

42.

Treadaway

Kenning

(2016). Sensor e-textiles: Person centered co-design for people with late stage dementia. Working with Older People, 20(2), 76–85. https://doi.org/10.1108/WWOP-09-2015-0022

43.

Tsekleves

Bingley

A. F.

Luján Escalante

M. A.

Gradinar

(2020). Engaging people with dementia in designing playful and creative practices: Co-Design or co-creation? Dementia, 19(3), 915–931. https://doi.org/10.1177/1471301218791692

44.

Watchman

Mattheys

McKernon

Strachan

Andreis

Murdoch

(2021). A person‐centred approach to implementation of psychosocial interventions with people who have an intellectual disability and dementia—a participatory action study. Journal of Applied Research in Intellectual Disabilities, 34(1), 164–177. https://doi.org/10.1111/jar.12795

45.

West

Stuckelberger

Pautex

Staaks

Gysels

(2017). Operationalising ethical challenges in dementia research—a systematic review of current evidence. Age and Ageing, 46(4), 678–687. https://doi.org/10.1093/ageing/afw250

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