Visual stories and living with dementia: Developing and co-constructing a neighbourhood map with Diane and Dave to represent ageing-in-place

Visual stories and living with dementia

Developing and co-constructing a neighbourhood map with Diane and Dave to represent ageing-in-place

Xia Li, John Keady and Richard Ward

Introduction

Across the world, the rapid growth of the ageing population has resulted in an increasing demographic of people living with dementia (World Health Organisation [WHO] and Alzheimer’s Disease International, 2012). For example, in the United Kingdom (UK), there are approximately 850,000 people living with dementia (Alzheimer’s Society, 2017) with that number expected to increase to over 1.1 million by 2025 and 2.1 million by 2025 (Alzheimer’s Society, 2015, p.l). Creating age-friendly and/or dementia-friendly communities is one response to enable this population to both ‘age in place’ (Frank, 2002; Wiles et al, 2008) and ‘live well’ with the condition (WHO and Alzheimer’s Disease International, 2012; Alzheimer’s Disease International, 2017) within an inclusive and enabling environment (Davey et al., 2004; Fitzgerald and Caro, 2014). In the UK, the development of dementia-friendly communities has become one of the government’s key priorities in the Prime Minister’s Challenges on Dementia (Department of Health, 2012, 2015), although there is ‘no one size fits all’ model as to virat such a community might look like (Alzheimer’s Disease International, 2017). To help provide some clarity, in our work, we have taken the notion of a ‘neighbourhood’ as a staxting point (Keady et al., 2012), and more specifically, have focused on how people living with dementia define and socially construct their own ‘lived neighbourhood’ (Ward et al, 2018). It is from this starling point that this chapter and the participatory case study is shared. However, before we do this, we will start by outlining the meaning of a neighbourhood in a little more detail.

What is a neighbourhood?

Historically, a neighbourhood has been defined as art important multi-dimensional place where people live and interact with physical, social and cultural factors resulting in the development of patterns of behaviours (La Gory et al., 1985). It is this ‘lived place’ that explains the person-environment dynamic, linking neighbourhood living to health status (Satariano, 2006) and particularly to social health

(Huber et al., 2011; Vemooij-Dassen and Jeon, 2016). Thus, the concept of a ‘neighbourhood’ encompasses many social and subjective meanings and interpretations; for example, it could be seen from an experiential perspective as a place where people live and structure their environment (Bernard et at., 2007) and/or a place that staxts indoors and moves out into the local environment (Tang and Brown, 2006). In a social mapping study involving 21 people living with dementia and their care paxtners from two areas of the UK - Stirling in Scotland and Greater Manchester in North West England - Ward et al. (2018) have recently developed the concept of a ‘lived neighbourhood’ to explore the person living with dementia’s enxbodied sensory comiections to place-making aixd belonging. Crucially, by using a mixture of creative social research methods, including walking interviews and visual data methods, the study revealed that a person living with deuxentia’s experience of a neighbourhood altered over time aixd that everyday routines contribxxted towards the person living with denxentia’s experiences of being positioned as active place-makers in their neighbourhoods (Ward et al., 2018). This was observed through the person living with denxentia’s creation of meaningful fxieixdships and social comiections.

Whilst accessing the neighbourhood has great significance for independence, social contact and quality of life (Mitchell and Buxton, 2010; Pierce et al., 2011; Keady et al., 2012; Odzakovic et al., 2018; Ward et al., 2018), people living with dementia can experience a ‘shrinking world’ due to the onset and progression of the condition and the environmental challenges in the neighbourhood (Myers et al., 2005; Duggan et al., 2008). Our participatory case study work was borne out of an interest in these issues and looked to uncover the meaning, construction and place of neighbourhood in the lives of five couples where one partner had an early diagnosis of dementia, as we will now go on to explain.

Study design

The participatory case study presented in this chapter formed one of the five cases in Xia’s PhD study (Li, 2018) where John and Richard (as co-authors) acted as supervisors. The study took place in an East Midlands county of England and adopted a narrative design within a longitudinal, participatory case study approach. Narrative inquiry pays attention to people’s life experiences in real-world settings via storytelling and, according to Connelly and Clandinin (2006), requires simultaneous exploration of temporality, sociality and place whilst also providing a way of conceptualising and understanding experience through collaboration between the academic and participant co-researcher(s) over time. To enhance participants’ authentic voices through storytelling, the participatory method is both an ethical and logical choice as people living with dementia can remain active members of the plarmed activity and in charge of their own narrative accounts. This approach also contributes towards the rights-respecting (Alderson, 2012) and rights-based (Beazley et al., 2009) principles for people living with dementia as well as facilitating a sense of personhood (Kitwood, 1997). As such, the story is constructed by the participant co-researchers (see also: Swarbrick and Open Doors, 2018; Swarbrick el al., 2019), a point that is also developed in Chapter 10 of this book.

In our study, participator}' mapping was seen as a tool for empowerment and was utilised to enable and present people’s knowledge, perceptions and experiences of their locality (see Pathways through Participation, 2010). Participator}' mapping has gathered increasing interest in recent years and has been widely used across many disciplines from community mapping to social network mapping (see, for example, Water Aid, 2005; Gessa, 2008; Emmel and Clark, 2009; Ward et al., 2012). The adoption of this method has been seen to enhance narrative agency for the person living with dementia (Baldwin, 2006). In addition, photographs and diaries are seen as forms of ‘accessories’ to life and a means of elaboration and corroboration of everyday life (Emmel and Clark, 2009). Photographs can be used to communicate meanings throughout the life course and enable others to see and feel as the participant does (Riessmau, 2008), whilst diaries can produce a structured account of daily activities over time (Emmel and Clark, 2009). These two methods could also increase narrative agency of the person living with dementia (Baldwin, 2006) and enable the participants to retain control over their own stories and make sense of their own experiences (Clark and Emmel, 2010). The combination of these participatory methods alongside more traditional interviews provided a foundation to smdy personal life (Roberts, 2002) and to capture rich insights into subjective feelings and beliefs, especially when conducted over time (Barlett and Milligan, 2015). Arguably, the use of a mix of qualitative, participator}' methods also generates a more authentic representation of the participants’ lived experience and delimits the traditional ‘power imbalance’ in the researcher-participant relationship.

In this chapter, we will articulate the key features of one case study from Xia’s PhD study, focusing on how Diane (a person living with dementia) and Dave (her husband and care partner) used participatory mapping techniques in conjunction with other creative and visual social research methods, to make sense of the world outside their front door and to illustrate then understandings of their neighbourhood. The names ‘Diane’ and ‘Dave’ are pseudonyms agreed with the couple and act to provide anonymity to the participants in line with the study protocol (Li, 2018). Ethical permission to conduct the participatory case study was obtained fr om the Nottingham Resear ch Ethics Committee 1 and the relevant NHS Trust Research and Development department hr line with research governance procedures. Through the year-long period of engagement, process consent (Dewing, 2007) was used at each visit to ensure that Diane was fully informed about the study and continued to consent to participate. Diane and Dave were recruited through a local memory clinic in their NHS locality (see Li, 2018, for a more complete accoimt).

Case study

To obtain rich insights into the lived experiences of dementia, and to co-create the participatory neighbourhood map, it was important to build rapport and trust with Diane and Dave. This required a ‘safe space’, therefore, Xia met Diane and Dave once a month at their home where the couple felt most at ease and confident to express their thoughts and feelings. These visits lasted for one year, starting in August 2011 and ending in July 2012. Each visit ranged from around 40 minutes to 80 minutes in duration. In total, Xia spent just under 12 hours with Diane and Dave discussing their everyday experiences of living with dementia and facilitating the co-construction and co-creation of their neighbourhood map. These repeated contacts enhanced and strengthened the collaborative relationship.

At the start of the engagement, and to ease the couple into the research process, Xia spent the first two visits in August and September 2011 exploring and understanding the couple’s family and relational dynamics and their overall experiences of living with dementia. Whilst the interviews were initially semi-structured, the conversations gradually moved towards what Diane and Dave identified as ‘the most important things’ which, in reality, meant that subsequent conversations - and visits - were guided by the couple. This participatory approach was especially evident during the neighbourhood mapping exercise supported by the couple’s photography and diary keeping to illuminate the neighbourhood map. However, before we go any further, we will contextualise the participatory case study by introducing Diane and Dave.

Diane and Dave

At the time of engaging with the study in August 2011, Diane and Dave were both 76 years of age and they had been married for over 50 years. For most of their married life, the couple had lived in an affluent and well-established village in the Midlands region of England. Diane and Dave had initially lived in a two-storey, four-bedroonred house for many years before moving into a bungalow in 2004 in a village setting - the dwelling where Xia first met and interacted with the couple. This move in 2004 was in response to Diane’s increasing mobility difficulties due to her arthritis. Living in the bungalow allowed Diane easy access around the property and the lack of stairs was particularly helpful at that time and in the years to come, especially in Diane’s post-stroke rehabilitation, reduced mobility following the progression of arthritis and the onset of her Alzheimer’s disease in 2009. Diane also lived with Parkinson’s disease, glaucoma and healing problems.

Diane was cared for and well supported by her husband, Dave, who described being the main care partner as ‘stressful’. In addition to his caring responsibilities, Dave also undertook most of the domestic chores around the home whilst maintaining community positions and responsibilities on tluee village conunit- tees. The couple had a strong, supportive and loving relationship and enjoyed similar interests, all of which enabled Diane and Dave to maintain a full and active social life together. The couple’s social life was mainly built around their involvement in the village committees and activities, such as regular committee meetings and the local neighbourhood watch. For Diane, although dementia and other conditions affected her ability to participate, the village committees encouraged her ongoing participation by subtly adapting and adjusting her role and responsibilities on them. Accordingly, Diane was continually supported to contribute to each committee as an active and valued member. Diane and Dave felt that the committees were ‘one of the best things in the village’ which gave them ‘a very good social life’ and, as Dave later shared, led to them ‘not having a lot of time to do other things’.

After building a rapport during these early visits, it was evident that Diane and Dave believed that a ‘neighbourhood’ was a meaningful concept to them in their everyday life atrd were very willing to document and map their understanding about it. This was achieved by the couple deciding to draw their neighbourhood map together whilst enhancing and illustrating their neighbourhood map with photographs and other documentary artefacts. The couple also kept a diary to record significant activities in their neighbourhood and, in tune, these details were also added to their neighbourhood map. These processes will now be discussed further.

Participatory mapping in practice

The co-creation and co-production of the neighbourhood map started at the time of Xia’s third visit to see Diane and Dave. It was produced through a three-stage process.

Stage I: Planning the neighbourhood map

During Xia’s third visit, Diane and Dave discussed what a neighbourhood meant to them and shared their views of the neighbourhood ‘ associated virtually with the whole of the village' where they had lived for over 40 years. Their self-defined neighbourhood included most of their social ties and networks. Additionally, Diane and Dave’s frequent contact and interactions with then friends and neighbours took place within close geographic proximity of their home in the village. It was the social ties and social engagements that gave rise to the importance of the entire village. Situated within this specific geographic understanding, Xia asked the couple to think about how they could present, and what they thought might constitute, their neighbourhood. In this way, Diane and Dave had time to reflect upon their locality atrd its personal meanings for them, ultimately taking ownership as to how they would like to convey the visual stories and mapping of their neighbourhood.

Stage 2: Drawing the neighbourhood map

During Xia’s fourth visit, Diane and Dave felt that it was the time to visualise their understanding of the neighbourhood and their everyday experiences. Following a discussion, and to assist the mapping process, Xia provided the couple with a blank piece of A1 paper, some coloured pens and stickers although the couple were, of course, free to add to, or not use, any of the provided items. Whilst the couple chose to use these materials, it was crucial that they could freely decide the way in which they would like to draw their neighbourhood map so that Diane and Dave felt a sense of ownership about their visual stories.

In the begiiming, Diane and Dave were unsure about how to start mapping the neighbourhood, therefore, Xia encouraged the couple to think about what they thought constituted their self-identified neighbourhood. To help the process along, Xia reassured the couple that there was no ‘light or wrong way’ of doing this and reiterated that the purpose of the mapping was to illustrate their understandings of the neighbourhood in an everyday context. Once that idea had been grasped, the couple’s confidence quickly grew, and Dave enthusiastically took a lead in the drawing of - and having control over - their neighbourhood map. However, Xia remained nmed-in and engaged in the process and continually checked with Diane whether or not the emerging neighbourhood map represented the neighbourhood from her perspective and understandings.

The drawing of the neighbourhood map was performed on a table in the lounge in Diane and Dave’s home. This close sitting arrangement between Xia, Diane and Dave created a supportive atmosphere for each person and focused minds on the task ahead. Dave started the process by pencilling the geographical structure of the village and then marked the important spaces and places about their everyday living on the produced map. This included the couple’s own bungalow, three public houses, a church, a post office (which doubled-up as a grocery shop), a school and a village hall. This sketch represented the geographical boundaries and landmarks of their self-identified neighbourhood. This was followed by Xia eliciting information in relation to the location of their social networks. As a consequence of this prompting, Dave outlined their important social ties on the map by writing down these people’s house numbers to show their location in the village. The couple also discussed the way in which they could enhance the visual representation of the neighbourhood and decided to use coloured highlighters to distinguish spaces, places and people. This decision illustrated their skills and creativity during the mapping process. As shown in Figure 7.1, the initial map provided a largely descriptive overview of the neighbourhood. The names of the three public houses and the river have been redacted to anonymise the depiction.

To further enhance the descriptive version of Diane and Dave’s neighbourhood map on Figure 7.1, Xia encouraged the couple to talk about their thoughts and feelings about their everyday lived experiences with the locations identified on the neighbourhood map. This detail was then placed onto the neighbourhood map by Diane and Dave and it documented how often the couple met with their social circle, and where. At this point in the development of the neighbourhood map, Diane and Dave felt that it was important to mark the level of closeness of their friendships and the frequency of contact with their friends. This level of detail, and how it should be framed within the visual narratives on the neighbourhood map, was negotiated between the couple and Xia. This back and forth dialogue eventually led to the final version (as it w'as labelled at the time) of the couple’s neighbourhood map, which is shown in Figure 7.2.

The first stage of the neighbourhood map drawn by Diane and Dave

Figure 7.1 The first stage of the neighbourhood map drawn by Diane and Dave.

The final neighbourhood map drawn by Diane and Dave

Figure 7.2 The final neighbourhood map drawn by Diane and Dave.

As presented in Figure 7.2, each ‘sticker’ on the neighbourhood map indicated how often Diane and Dave saw their friends and neighbours, which ranged from once a week to three times a week. Moreover, the level of closeness of the fr iendship to the couple was placed on the neighbourhood map through an allocated number on the left comer of the sticker. For example, number one represented their best friends, number two their second-best friends and so on. Many of the activities shown on the neighbourhood map were those that the couple carried out together; however, where Dave’s sole activities in the neighbourhood took place, his actual name has been redacted for anonymity.

Stage 3: Refining and finalising the neighbourhood map

Once Diane and Dave had mapped their neighbourhood, in the ensuing months together, the conversations between Diane, Dave and Xia moved on to talk about what was important on the map and why. For instance, as seen in Figure 7.2, the village hall was a significant place and Diane described its value and popularity in the following way:

The most useful thing we had in the village - that we used a great deal - is our village hall ... you’ve got a job to book it if you want to use for any reason because every day it is used.

The village hall in particular held specific meanings to the couple, derived from then regular coimections when participating in social events and attending local committee meetings. The couple talked animatedly about their attachment to the spaces, places and people shared in Figure 7.2 as it somehow seemed to embody and capture their individual and shared life together. Indeed, the neighbourhood map in Figure 7.2 also served as a catalyst for in-depth conversations and helped to uncover stories that might not otherwise have been forthcoming. These discussions also brought forward the couple’s knowledge about the village and its own material biography. In many ways, the finalised neighbourhood map in Figure 7.2 is about Diane and Dave’s biography as well as the inherent biography of the village.

Dining this additional time together, the neighbourhood map in Figure 7.2 was further enhanced and refined by using diaiies and photographs taken by the couple. To explain a little more, in the use of a diary method, Xia provided the couple with a predefined template to record their important activities and associated impact on their lives, although there was no expectation that it would be used. As a result, Diane decided to use the template as she preferred the structured format to record her weekly activities but wrote them in a style she felt most comfortable with. Moreover, Diane and Dave subsequently took photographs of their neighbourhood to further illustrate what was important to them. In these activities, the couple decided to use their own digital camera rather than the provided disposable one and in one of these activities, photographed a ‘Guide Dogs for the Deaf event which was held in their village hall, as shown in Figure 7.3.

The'Guide Dogs for the Deaf’ event

Figure 7.3 The'Guide Dogs for the Deaf’ event.

This picture held multiple meanings for the couple and one of them was that the photograph represented their past history about having a much-loved dog, a pet which was now long deceased. The neighbourhood was, therefore, not a static entity but a dynamic one that moved through time and held personal biographical memories. Acting on their own volition, Diane and Dave then used these records to imbue their neighbourhood map with personal and visual stories. This was a process that took the couple several months and Figure 7.4 illustrates this lived and visual neighbourhood and their personal theory'.

Insights gained

Using innovative, participatory methods

This participatory case study revealed Diane and Dave’s insights into the meaning, construction and place of the neighbourhood into the couple’s every'day lives. The final neighbourhood map (see Figures 7.2 and 7.4) brought the couple’s everyday experiences to life via multiple visual representations of their neighbourhood. Taking their personal meaning of the neighbourhood as an example, the traditional social research method of interviews revealed that Diane and Dave defined their neighbourhood as ‘associated virtually with the whole of the village’ a statement that highlighted the significance of the couple’s social networks and their embedded memories of place. At first glance, this statement offers a valuable insight into the couple’s lived neighbourhood, but look a bit deeper, and a more

Diane and Dave’s comprehensive neighbourhood map

Figure 7.4 Diane and Dave’s comprehensive neighbourhood map.

embodied and sensory stoiy can be found, one that is built layer upon layer, time upon time, place upon place. The neighbourhood map gradually evolved from a descriptive outline through to a complete version which revealed the couple’s biographical connection to their neighbourhood capturing all the important people, spaces and places derived from their interactions and memories over time. This required a methodological approach that was itself personalised, layered and constructed over time.

Methodological conceptualisation versus actual participation

When using participatory' methods to actively engage with people living with dementia, methodological conceptualisation might need to adjust to actual participation. In other words, ‘the imagined ideal of participation and actual practice on the ground often manifest quite differently from one another’ (Gubrium et a!., 2015, p.21). Taking the participatory mapping outlined in this chapter as an example, for the academic co-research team there was a preconception about what the map might look like based upon the existing literature. However, the co-creation and co-production of the neighbourhood map by Diane and Dave (see Figures 7.2 and 7.4) was unique and represented the couple’s identity, creativity and sense of belonging to the place in which they lived and had aged together. It was also an opportunity to engage in a relational process that was fundamental to the emergence of the neighbourhood map.

Such participatory approaches begin to question the nature of knowledge and whose knowledge counts in the production and generation of ideas about research and what constitutes authentic representation (Kincheloe et al., 2011). In our study, researcher flexibility was crucial in adapting the original understanding of paxticipatory research at both theoretical and practical levels, facilitating a paxticipant co-researcher led knowledge production process. More importantly, flexibility also existed to respect the participant co-researchers’ lights axxd person- hood performed through a social citizeixship lens (Bartlett aixd O’Connor, 2010). In addition, the use of photographs initially aimed to capture the significant landmarks of the neighbourhood and whilst this was achieved, the photographs moved beyond the physical environment to capture a far more complex picture of social networks and social events. Being flexible in approaching the research process and being open to listen and leant from those with lived experience was so important in gaining an authentic and representative account of the neighbourhood.

Ethical issues

The ethics of involving people living with denxentia was woven into the fabric of the entire research journey and aimed to uphold people living with denxentia’s sense of agency and right to be acknowledged as equals in the creation of knowledge. We will now draw attention to the ethical nuances based upon three ethical issues: process consent, safe space and potential risks.

Process consent

To frilly involve paxticipant co-researchers, hi our experience, the first step was to ensure that the couple had the light to decide and confirm their participation. In the presented research design, Diane and Dave were initially recnxited through a local community mental health team for older people before being contacted by Xia; this step ensured that the couple had sufficient time to make a free choice about engagement. Subsequently, gaining consent from the couple to take part was especially important given the longitudinal nature of the participatory case study and the likelihood that Diane’s cognitive abilities might be further compromised during the one-year period of engagement. Although process consent added an additional layer of complexity to each visit (Dewing, 2007), it was important when assessing Diane’s capacity to continue to consent to take part through a ‘fair evaluation’ of her understanding about what was happening (Heggestad et al., 2012). An unexpected oxxtconxe from this activity was the opportunity to observe Diane giving careful thought to the consent process aixd to note her willingness to sign the consent form on each meeting irrespective of her struggles to wxite, which was Anther hampered by her arthritic changes. In effect, process consent became euxpowexing and served as a warm-up discussion at the point of being in the couple’s home by being a reminder about the purpose of the research and oxxr time together.

Safe space

Creating a safe space was also crucial to all encounters and to Diane and Dave’s active and continued participation in the study. Indeed, all the encounters took place in Diane and Dave’s bungalow, a place where they felt most at ease and relaxed (Hendriks et al., 2013; Schack Thoft, 2017). Meetings and time together also included accessing the garden spaces of Diane and Dave’s home when the weather was nice and amenable to sitting outside together. Whilst the importance of establishing a trusting and committed relationship has been identified as an important aspect of the research act (Hellstrom et al., 2007; Hendriks et al., 2013; Schack Thoft, 2017), the space where this occurs is often overlooked, especially in the outdoor spaces of the home. Much more work is required to help promote a more rounded understanding.

Potential risks

The third ethical issue is potential risks, especially in situ and where everyday ethical issues are more likely to arise (Guillemin and Gillam 2004). In this study, when Diane and Dave discussed their lived experience of dementia and its impact upon their everyday lives, close attention was paid to the nature of the conversations and any potential emotional harm arising from the conversation. However, this had to be balanced against the knowledge that some areas of a life lived with dementia are challenging and can lead to interpersonal conflict and personal frustration. In this work, the longitudinal engagement and maintained trust between Diane, Dave and Xia meant that such conversations could be aired and seen as an everyday component of daily life. To deny the conflict and negative consequences of ageing and dementia is, itself, not ethical and Diane and Dave were given as much time as they needed to work through their emotions and personal well-being.

Issues of reflexivity

When conducting a participatory case study, we would suggest that specific attention should be paid to maintaining reflexivity during all research encounters. This is important in order to make in situ decisions when adopting participatory methods and working with people living with dementia due to the ethically sensitive moments and dilemmas occurring during the fieldwork. Reflexivity draws attention to the reflection on the ‘self and the critical examination of power relations and accountability in data collection and research interpretation. In other words, reflexivity is about being reflexive regarding power relations and positionality of inserting the self during knowledge production and interpretation, with sensitive positionality being an integral feature of ethical mindfulness (Sultana, 2007; Canosa et al., 2018). We will now further discuss how reflexivity was upheld and maintained through our participatory case study.

When supporting participatory activities involving people living with dementia, the researcher needs to be empathic and be prepared to constantly shift between the ‘academic’ role and the ‘friendship’ role, in what Cornwall and Jewkes (1995) called a ‘zig-zag pathway’, in order to reduce inherent power imbalances. This fluidity is particularly challenging to enact or maintain when inserted into multiple layers of collaboration. Taking participatory mapping from this chapter as an example, to initiate the process, Xia stepped in to guide the couple to think about what constituted their neighbourhood. Once Dave responded to this prompt by starting to sketch the neighbourhood map, Xia helped to empower Diane to talk more about their neighbourhood and to check with her whether or not the mapping reflected her view and everyday experiences of her neighbourhood. This subtle shift of power was crucial in enabling the couple to have creative control and ownership of the product that was being produced during each encounter. In the final versions of the neighbourhood map (Figures 7.2 and 7.4 in the chapter), Diane and Dave together made the final decision on presentation and representativeness. It is what gives the personal theory that additional authenticity.

On the other hand, irrespective of the use of visual methods which creates an additional layer of complex ethical challenges (Wiles et al., 2008; Cox et al., 2014; Wan- et al., 2016), the example also illustrates how power relations were balanced between the researcher (Xia), the person living with dementia (Diane) and the care partner (Dave) to work towards an egalitarian principle. The example also seeks to highlight rights-respecting (Alderson, 2012) and rights-based (Beazley et al., 2009) principles as well as arguably supporting personhood for Diane especially (Kitwood, 1997). It is this continuing negotiation of positionality as an ‘academic’ co-researcher, and being reflexive and responsive to need, that made the participatory case study work effective and enabled Diane and Dave to actively engage in - and lead - the research process. This leadership role harnessed the couple’s authentic voice based upon relational and egalitarian principles. Additionally, this example demonstrates the researcher being mindful of the relationship with, and between, the couple. Given the fact that Xia's interpersonal dynamics with Diane and Dave were gradually changing, and her status was moving from ‘outsider’ towards ‘insider’ over time, she needed to be even more mindful of this evolving relationship and when the power relationship could be moved towards the couple, and held by them. Enabling the couple’s creative expression to flow was the cornerstone to this particular relationship through the building and mapping process.

Following research accountability in data collection, reflexivity continues in data analysis and interpretation. This is to be mindful of how narrative is conveyed and to be aware of the role of the storytellers and of its audiences (Riessman, 2008). It is, therefore, crucial to locate the ‘self in knowledge generation and in interpretation using narrative analysis. Although Xia’s academic background (and that of her PhD supervisory team) enabled ‘us’ to bridge this gap, recognition of such a dilemma was another key aspect of reflexivity. For example, we sought an understanding of Diane and Dave’s relational dynamics and aimed to portray a balanced view of their relationship. When communicating their storylines, we not only presented the ‘pressure’ Dave felt in being the main carer whilst also serving on three village committees, but also illustrated that Diane appreciated how well Dave looked after her, that she supported him as and when she could and that she maintained a loving relationship with him.

Discussion and conclusions

Through this participatory' case study, we have illustrated how, by working alongside Diane and Dave’s lived experience, the couple were supported to creatively map their neighborhood in a way that was personally meaningful to them. The final neighbourhood maps shared in Figures 7.2 and 7.4 could also have practice implications insofar as the identified spaces, places and people have the potential for engagement in raising awareness about dementia and in supportive neighborhood living. Perhaps this is the next phase in this participatory case study design, turning the individual experience into collective neighbourhood action framed around a public health/education engagement programme.

In the chapter, we have also identified and unpacked several ethical and reflexive issues that have emerged through both theoretical principles and practical examples. First, we emphasised some methodological and operational points. A fundamental step towards participatory case study work is to offer tailored, person-centred methods to facilitate agency and to enhance active engagement. Second, gaining ongoing consent, creating a ‘safe space’ and establishing trusting relationships were key to respecting personal rights and facilitating engagement based on the biographical knowledge of those taking part. Third, participatory case study work involves sensitive positionality which is ciitical to facilitate active participation, balance power relations and enable a sense of agency during the longitudinal nature of the engagement.

The example of the paxticipatory' mapping process showcases how such a method was implemented through a ‘zig-zag’ pathway and how the researcher constantly shifted within the ‘academic’ role balancing the power relations between the self, Diane as the person living with dementia and Dave as the care partner. It was this participatory process that enabled the couple, together with Xia, to map out Diane and Dave’s self-defined neighbourhood map and to illustrate through and on it, their complex, dynamic relationships with this living environment. In effect, the co-constructed map is a graphic portrayal of the physical construction and social relationships within the neighbourhood, providing a visual representation of the couple’s understanding of people, space and places outside their front door (see also: Rempel et a!., 2007). Moreover, the utilisation of mixed qualitative methods over time also presented opportunities and complexities of working with people living with dementia and their care partners, emphasising the significance of ‘an intersubjective and reflexive dialogue’ (Meloni et a]., 2015, p.108). This approach is built upon relational, biographical and egalitarian piinciples, ultimately adding dynamics and nuances to the phenomenon of interest, whilst questioning ‘our’ (i.e. academic co-researchers) own methodological conceptualisation, research practice and ethical dilemmas. This consideration is important when active participation becomes feasible and practical and is ‘not merely techniques but a participatory process’ (Ansell el al., 2012, p.170).

In summary, for participatory case study work to be successfully implemented, it is essential to pay greater attention to issues of reflexivity, positionality, power relations and social justice based upon the plurality of (temporally and spatially) situated voices and silences (Peake and Trotz 1999). This is especially so when involving people living with dementia whose capacity to contribute will fluctuate over a longitudinal engagement. This latter point should not be framed as a challenge or a problem but as an opportunity to develop authentic research where relationships and co-creativity between all involved are the bedrock of working and learning together.

Key learning points from the method used

  • • The participatory research should be built upon relational, biographical and egalitarian principles which guide the entire process.
  • • The combination of participatory methods and conventional social research methods considers the variation in an individual’s strengthens and limitations, with the aim of upholding people living with dementia’s agency and participatory rights.
  • • Gaining (process) consent, creating a ‘safe space’ and establishing trusting relationships are crucial to effective collaboration.
  • • Flexibility and ethical mindfulness are crucial, especially when encountering differentiations between methodological preconceptions and research practice
  • • Attention to reflexivity, positionality, power relations and social justice is the foundation to succeed in participatory case study work whilst considering the plurality of temporally and spatially situated voices and silences.

Three key references

Emmel, N. and Clark, A. (2009). The methods used in connected lives: Investigating networks, neighbourhoods and communities. http://eprints.ncrm.ac.Uk/800/l/2009_con nected_lives_methods_eimnel_clark.pdf

Hellstrom, I., Nolan, M., Nordenfelt, L. and Lundh, U. (2007). Ethical and methodological issues in interviewing persons with dementia. Nursing Ethics, 14(5): 608-619.

Hendriks, N., Truyen, F. and Duval, E. (2013). Designing with dementia: Guidelines for participatory design together with persons with dementia. In Kotze. P., Marsden, G., Lindgaard, G., Wesson, J. and Winckler, M. (eds.), Human-computer interaction - INTERACT 2013. Lecture notes in computer science, vol 8117 (pp. 649-666). Berlin: Springer.

A recommended future reading list

Heggestad, A.K.T., Nortvedt, P. and Slettebo, A. (2012). The importance of moral sensitivity when including persons with dementia in qualitative research. Nursing Ethics, 20(1): 30-40.

Riessman, C.K. (2008). Nairative methods for the human sciences. London: Sage.

Schack Thoft, D. (2017). Involving people with early stage dementia in qualitative research about their lifeworld perspectives: Development of a participatory research model. PhD thesis. University of Northampton and Aalborg University, Denmark, http: //nectar.northampton.ac.uk/973 l/l/Schack_Thoft20179731 .pdf

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