New horizons: Working with communities to develop dementia-friendly churches

New horizons

Working with communities to develop dementia-friendly churches

Bob Friedrich, Bob Woods and Sion Williams

Introduction

In this chapter, we chart the development of a participatory case study that was action-orientated in its approach to understanding how best to encourage the growth of dementia-friendly churches within the framework of dementia-friendly communities. The study was embedded in participatory case study work and the wider participatory tradition of empowering communities through learning and action (Kesby el al., 2010). The importance of developing dementia-friendly communities is now widely accepted, presenting a tangible indication of the paradigm shift towards recognising the citizenship of people living with dementia (Lin, 2017). Questions emerging from such initiatives include exactly what constitutes a dementia-friendly community, and what are the best ways to develop, scaffold atrd sustain them. The authors considered that an examination of the emerging area of dementia-friendly churches could be of potential importance in bvtilding support for people living with dementia as part of the broader community and addressing key issues of spirituality as well as providing an exemplar of efforts to create a dementia-friendly orientation within a faith community.

Background

Whilst dementia-friendly churches may be a recent development, an interest in a ‘dementia ministry’ had been a feature for Bob (F) across many years since his ordination in 1986 in the Episcopal (Anglican) Church in the United States of America (USA). Of particular relevance was his work for over six years as a chaplain in a Boston hospice. This experience was a catalyst for Bob (F) as he discovered an intense enjoyment of being in the company of people living with dementia. Through experiential learning, he noted the dramatic effects of religious music (on his iPad), liturgy and prayer on engagement of people living with dementia. A turning point was working with a lady of Greek heritage at the hospice, who was identified by clinicians as ‘non-commimicative’ yet ‘came to life’ as Bob (F) utilised his knowledge of Biblical Greek to pray the ‘Our Father’ and read scripture in the Greek language.

The current study was established as the final phase of Bob (F’s) PhD work centred on investigating the phenomenon of dementia-friendly churches within the context of the Anglican Church (Chinch in Wales). Bob (W) and Sion served as the supervisory team for the duration of the study. This multi-phased study sought to layer a detailed understanding of dementia-friendly churches, built on an initial scoping review of the literature (Arksey and O’Malley, 2005), centred on the experiences of clergy in providing spiritual services to persons living with dementia and a subsequent exploration of the views of Anglican clergy about dementia and the development of a ‘dementia ministry’ (Friedrichs et ah, 2020). These early parts of the PhD study were contextualised within an examination of the broader perspective of key pioneers in the field of Christian-based dementia- friendly churches. The final phase of the study focused on a participatory case study around the development of dementia-friendly chinches across a series of five diverse communities and Anglican (Church in Wales) ‘Mission areas’ across North Wales. It is this action-orientated part of the fieldwork and its findings that will be the focus of this chapter. Significantly, participatory research offers a wide range of approaches that shift the balance of power and control between researcher and researched, promoting the ‘voices’ of people to emerge (Aldridge, 2015). This was of central importance to the work completed by Bob (F) using a participator}' case study approach.

Although the intrinsic case (Stake, 2000) is centred on the development of dementia-friendly chiuches within the Anglican Church, it raises wider issues relevant across different faith traditions. The participatory case study provided a challenging, yet enriching, form of research practice centred on the role of ‘priest-researcher’ as a platform for enlisting communities in social change and learning. The study detailed in the chapter highlights a potential framework for supporting the generation of dementia-friendly churches, including the role of ministry and chaplaincy. It also provides some reflexive insights on being the ‘priest-researcher’ as part of a participatory case study approach.

New horizons: The emergence of dementia-friendly churches

Whilst the umbrella of dementia-friendly communities is increasingly well established (Lin, 2017), the role of‘dementia-friendly churches’ is a more recent development. For instance, a recent Canadian study saw some evidence that churches were providing a place where persons living with dementia could find support, citing its accessibility to urban and rural centres and religion’s role in providing a repository' of early memories (Plunkett and Chen, 2016). In the same year, a UK study of faith in carers noted that ‘currently there is a growing movement to challenge and equip UK churches to become intentionally dementia-friendly’ (Jewell et at., 2016).

Arguably, at its core, the development of dementia-friendly chin ches is rooted in the area of personliood. As Kitwood (1997) defined it, of all involved - clergy, carers, church members, and (most importantly) persons living with dementia - personhood relates to:

A standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust.

(P- 8)

Interestingly, MacKinlay (2016) wrote a personally reflective study of her experiences working spiritually with persons with dementia since she met the well- known dementia advocate Christine Bryden in the mid-1990s and notes that persons living with dementia find small groups supportive and places where not only cognitive but also emotional and spiritual needs are met.

A number of studies have addressed this theme, indicating a number of ways in which this support might be provided, including pastoral visiting, perhaps with a form of religious service, and personal support (Stansbury and Schumacher, 2008; Stansbury et al., 2010; Kevem and Walker, 2013). Similarly, Tompkins (2008) conducted a grounded theory study utilising focus groups with 12 Meimonite and Lutheran clergy, who reported a lack of knowing what to do for persons with dementia: ‘It wasn’t out of love [lack of love] that my people didn’t respond; it was that we don’t know what to do’ (p.24).

In terms of clergy. Kennedy et al. (2014) reported the positive experiences of their involvement in supporting people living with dementia. They saw worship events as naturalistic psychosocial interventions with a potential positive effect on the well-being of the person living with dementia, with sendees providing social support. Interviewees emphasised the importance of familiarity in the elements of the service, such as familiar hymns and prayers and of a familiar structure to the service. Sensoiy cues such as candles, music, the priest’s robes and so on were seen as helpfi.il in engaging people living with dementia.

However, as Kevem and Walker (2013) reported, the most common response amongst clergy was concern about their adequacy in providing skilled support for persons living with dementia and their carers. This was echoed by Plunkett and Chen (2016) who indicated that clergy felt underprepared to support people living with dementia. In an attempt to meet such needs for clergy, Keefe et al. (2018) described an online Behavioural Health and Aging Certificate from Boston University that they provided for a group of clergy. Hirst (2016) reported case studies of both dementia-friendly church services and specific services orientated to people living with dementia, employing ‘Bright Shadows’ resources. Focusing on African Americans, Epps et al. (2019) identified the themes of ‘engagement, promotion of faith and spiritual connectedness’ and ‘maintenance of religious practices’ as crucial in a dementia-friendly church setting. The authors stressed the importance of religious activities and beliefs to well-being and on the quality of life of people living with dementia and their family carers.

Yet there is some requirement for infrastructure or support to generate dementia-friendly church initiatives. For instance, Hammond et al. (2017) reported on an Age Friendly Neighbourhoods project in Manchester, UK. Here, a £2000 investment allowed a Methodist Church to make ‘Dementia Friends’ and start a memory cafe. Long and Shuman (2017) reported case studies of faith communities in the USA that offered a range of supportive programmes or projects for persons with dementia and their caregivers. In relation to support for carers, Jewell et al. (2016) identified the significant role played both by their faith and by the support of local churches. On a wider community basis, Trevor Adams’ book, ‘Developing Dementia-friendly Churches' (Adams, 2018), espouses churches as communities exemplifying kingdom of God values to all, especially persons living with dementia and their carers. This was echoed by Plunkett and Chen (2016) suggesting that churches could contribute significantly to community support for persons with dementia. In this way, a handbook edited by Biggar et al. (2019) supports dementia-friendly worship in various faith traditions, contributing to an emerging set of resources for dementia-friendly churches.

Study design

As part of the PhD study completed by Bob (F), the final phase involved participatory case study work. This required Bob to adopt the stance of a ‘priest- researcher’ building on the principles established by the formative work of Reed and Procter (1995). The earlier phases of the study in 2015 had centred on an analysis of the views of clergy about dementia, people living with dementia and supporting dementia-friendly churches. It also sampled the views of key pioneers who had been important in creating dementia-friendly churches across a range of denominations in the UK. The mechanism for enabling social action and the development of the participatory case study work during 2017 was that Bob (F) was successful in obtaining a small grant from the Economic and Social Research Council Impact Acceleration Account (ESRC LAA) in order to work with the Church in Wales ‘Mission areas’ to develop dementia-friendly churches.

Importantly, for Bob (F), participatory case study not only involved an emphasis on collaborative work but also on the ‘how’ and ‘why’ questions of case study work (Yin, 2014). In this way, the study sought to provide a theoretical lens to underpin social action across the Mission areas in order to develop a template for generating dementia-friendly churches. As such, the study aligned social action with learning about the social processes underpinning people’s response to the phenomenon of dementia and the dementia-friendly chiuch. As described by Yin (2014), overall, a strength of case study work is its ‘holistic view of certain phenomenon, with a rounded picture’ (p. 1603) building on multiple sources facilitating transferability. The adoption of a participatory case study approach for the final phase of the PhD provided a different stance from the earlier exploratory' case study work, which had been focused on the views of clergy and pioneers of dementia-friendly chinches. The participatory case study work enabled the

‘collective cases’ to provide transferable findings that advanced understanding as well as completing a process of social action within Mission areas. For Bob (F), the utility of participatory case study was that it facilitated the development of knowledge and learning for both the ‘priest-researcher’, but also for the participants across the Mission areas.

As seen throughout this book, participatory case study has an emancipatory orientation, challenging the hegemony of research and power structures in practice. This is aligned to its particular focus linked to the work of Paulo Freire and the importance of engaging participants, gr oups and/or communities in all phases of case study work and the research process, front design to dissemination. As such, the work contributed to ‘authenticity’ as the researcher both engaged with participants to generate social action but also presented an accessible account through reporting the case study work.

The setting for defining an area of action was Bob (F) and Bob (W) being involved in a major Diocesan Dementia-Friendly Training Day during March 2017. As part of the discussion emerging from the event. Bob (F) built on the consensus for developing dementia-friendly chinches within the Church in Wales Mission areas across North Wales and invited written responses from individual churches to express an interest, if they wished, to participate in a study based on using the funding from the ESRC IAA to support local church-based project work. Bob (F), as part of the recruitment strategy, sought a variety of urban and rural settings combined with an interest in developing social action to promote the role of their church in improving its care for persons living with dementia. Four churches were chosen from the Diocese of St. Asaph and one from the Diocese of Bangor. The five chinches selected included a mix of urban and rural areas and include two located in wider communities that were already working to become ‘dementia-friendly’. As such, they represented a range of case characteristics (Yin, 2014) to enable Bob to explore the process of social action and learning involved in supporting the evolution of dementia-friendly churches, as well as a range of proposed actions as seen in Table 11.1.

As part of the study design, Bob (F) involved each church in a process of engaging with social action over a six-month period (April-September 2017) to develop tailored initiatives that would contribute towards generating an environment of dementia-friendly churches, as shaped by individual church communities. This involved a number of overlapping phases with the ‘priest as researcher’ (Bob F) acting as a facilitator within the developmental process in collaboration with the chinches. The evaluative work across the five case studies was completed during the action-orientated process and as part of a review in October 2017, leading to feedback and the modelling of how dementia-friendly churches could be developed and supported.

The first phase was notification of the chinches that they were grant recipients. The second phase involved considerable activity with Bob (F) communicating with chinch clergy and volunteers by phone and email to develop plans and working towards a written proposal for how the seed-corn funding would be

Table 11.1 Case Studies across Mission Areas

spent so that the funds could be released. Each church was asked to commit to a ‘dementia-friendly project’ framed as something they could accomplish in about three months, which would benefit from the £450 ‘seed-com’ funding offered, marshal volunteer resources to accomplish and seek to benefit persons affected by dementia in their parishes. The deadline for written proposals was 30 June 2017, due to the funder constraints. The start of phase 3 focused on an evening session on ‘Dementia-Friendly Me/Dementia-Friendly Church’ led by Bob (F) and (in two cases) including Clnis Roberts, a person living with dementia who, with his wife Jayne, gives inspirational talks on living with dementia. Chris and Jayne are recognised internationally for their role in the dementia advocacy movement and the project was very fortunate to have their input. This was offered to all participating chinches, but could only be arranged in two, mainly due to logistic issues. These meetings assisted with dementia-friendly project selection and plans for implementation. They led to the recruitment and organisation of volunteers, who in most churches took forward the actions. For instance, All Saints’, Newtown, marshalled eight volunteers and St. Mary’s, Ruabon, recruited 20 volunteers.

In June 2017, the churches were invited to meet at a group lunch to ‘compare notes’ and evaluate what had happened with the researcher involved in the process. A final iteration of the evaluation and exploration of the process of change focused on a further discussion six months later, involving in-depth interviews with the clergy from each of the churches and meetings with small groups fr om the churches to leam of progress and further development. In this way, the study methods involved, in each case, the completion of stakeholder interviews and group interviews with church communities at specific sessions, as well as the immersion and engagement of Bob (F) within the dementia-fr iendly projects as they developed, using fieldwork observation (Zucker, 2009). The four case vignettes help to ground this process further and are referred to in the text that follows.

Developing dementia-friendly churches

Mapping social action: Emergent themes

As part of the analysis from the across case analysis (Stake, 2000, 2005; Miles and Huberman, 1994; Baxter and Jack, 2008), it was evident that a number of core themes emerged that underpinned what were the key factors involved in developing tailored action to generate dementia-friendly churches within the study areas (see Figure 11.1). These focused on: sustainability, contexts, process of change and getting started; implementing actions; and the impact of illness. They operated within the wider empowering mechanisms of the ‘priest-researcher’ role and the availability of funding. These themes will now be further outlined.

Sustainability

It appeared that leadership from the clergy alone in generating and developing dementia-friendly churches was problematic in achieving sustainability. In contrast, examples of work centred on clergy working jointly with the laity in partnered leadership worked well. Also, continuing interest and support from Diocesan leadership helped, with rewards for ongoing conunitment (dementia- friendly church recognition) adding impetus (Case vignette 11.1). Involving nonchurch community volunteers was crucial in invigorating initiatives with energy. The primary motivation in establishing and sustaining change was a sense of mission to support persons living with dementia and their carers. Funding appeared as an additional catalyst for churches towards creating and sustainable actions, although the funding available was modest (£450).

Figure 11.1 Mapping social action: key factors in establishing dementia friendly churches.

Contexts

The Church in Wales engaged in a 2012 study and concluded that in order to better meet the needs of its communities in a modern era it needed to have a '20/20 Vision’. Implementation of that required a move from the historic parish system to one that creates larger Ministry or Mission areas which:

Cover a broad geographical area. Rather than relying on individual clergy to minister to an increasing number of congregations, they are served by a mixed ministry team, some of whom are stipendiary ministers but most of whom are not.

(https://www.churchmwales.org.uk/review/mini stry-areas/, accessed 15 April 2020)

However, it appeared that a focus on developing a new system of organised church communities was a negative factor for the dementia-friendly church initiative in the short term. This was due to a broader focus on the wider integration within Mission areas and the need to forge new relationships and partnerships as well as an emerging model of shared leadership between clergy and laity.

Cose vignette I l.l Presentation of Dementia-Friendly Certificate by Bishop Gregory and BF to All Saints’ Church, Newtown.

Process of change and getting started

This theme focused ou the interrelated areas of engagement, motivations, facilitators and obstacles. Importantly, the Diocese, with its visible episcopal support for dementia ministry and its hiring of a Dementia Support Officer, lent its authority to effect encouragement. Cases differed in the number and range of people engaged in the project. For instance. Bistre Church notably depended on the efforts of one vicar, whilst All Saints engaged the active involvement of committed lay people. St. Aelhaiam’s depended on a vicar and a lay person, whilst St. Peter’s and St. Mary’s engaged several laity along with strong clerical leadership. In this way, the role of volunteers was central as described by a representative from St. Maiy’s, Ruabon:

Well the people that come and cook and contribute to the Time Well Spent [memory cafe] project. Obviously it would be a tremendous burden if it was the same people all the time, so there's quite a big team that share, some people are there every month but others will take more of a lead one month, or maybe they’ll take responsibility for the menu, and the next tune they’ll just come and peel the potatoes, and then they go away again.

A number of motivating and facilitating factors were identified beyond the funding provided. Bistre Parish Church’s rector had existing ties to civic efforts around dementia and so turned to the council for the idea of a bench and its placement. At All Saints, the vicar had trained lay ministers and encouraged their commitment

Case vignette 11.2 The Guy’ at 'Autumns Past’: dementia-friendly activities at All Saints’ Church, Newtown.

and creativity to invent and produce the ‘Celebrating the Seasons’ programme (Case vignette 11.2). St. Maty’s built on an existing bond between a leading lay person already engaged in dementia visiting at a hospital and care home (Case vignette 11.3). St. Aelhaiam’s put considerable brainstorming into developing ‘memory boxes’ (Case vignette 11.4). It also received help from the community when it asked. Rev. Caroline noted: ‘Rather than just going to shops and buying old items we’re asking around the community: “Has anyone got things that would help us?”’ In terms of barriers, an obstacle encountered by the Bistre project, in relation to getting bench placement approval, was formal approval processes yet other projects found little resistance.

Implementing actions

Creativity was evident in successful programmes where there was visionary clerical and lay leadership, contributing to imaginative actions. Chinches with existing relationships amongst people had little difficulty putting ideas into practice - notably All Saints, St. Mary’s and St. Peter’s. St. Aelhaiam’s depended on only two people and so had more work to do. The churches that encouraged initiative and creativity from the laity had more effective results than those that did not. All Saints Church already had in place a working lay ministry and quickly moved into their project, one with imaginative features. St. Maiy’s derived its resource box leadership from a dedicated churchwoman already involved in dementia ministry. St. Mary’s lunch programme was initiated by clergy but drew energy and hours from lay volunteers. St. Aelhaiam’s involved a small number of lay people. St. Peter’s benefited from lay involvement and non-church involvement.

Case vignette I 1.3 Clergy and laity from St. Mary’s Church, Chirk, display resource materials provided for care homes and visitors.

Community and relationships

All five of the churches adopted programmes that prioritised reaching out to their community. Whilst each of the five churches put the emphasis on outreach with their projects, in four, there was clearly secondaiy in-reach benefit that flowed to participants in the churches from working together on the activities. Yet none of them designed a programme specifically targeting the need of the congregation itself. Relationships with care homes were significant for several chinches - St. Mary’s Chirk specifically targeted care homes (with which they had an existing relationship), as well as a hospital, with their resource boxes. St. Maty’s invited residents of care homes to then reminiscence events. St. Peter’s moved their singing programme to a care home to connect with people living with dementia.

Impact of illness

Illness of the active clergy and laity had a negative impact on the development and sustainability of dementia-friendly churches. This was somewhat ameliorated by

Case vignette 11.4 Rev. Caroline Goddard from St. Aelhaiarn’s Church, Guilsfield, displays the memory box dementia-friendly project.

having large numbers of volunteers. On the other hand, when a programme was dependent on one or two individuals as a driving force, illness was devastating.

Insights gained

Modelling a change to dementia-friendly churches

The participatory case study work across the five cases highlighted a number of significant important factors that led to catalytic change as part of social action (Figure 11.2). These were again embedded within the relevance of mitial funding and the role of ‘priest-researcher’. The centrality of catalytic change involved the way churches were embedded in their local communities and the degree of sustainability and growth this enabled.

The ‘priest-researcher’ role facilitated the development of dementia-friendly churches within chinch communities, but this was mediated by the wider societal influences and awareness regarding dementia in the wider community. For instance, some churches were already part of communities working to become ‘dementia- friendly’. The main factors that seemed to build on catalytic change, funding and the ‘priest-researcher’ role centred on the following interrelated components:

• Community' rootedness: The engagement with the wider community, implicit in the parish system, making strong links with community partners (e.g. the Alzheimer's Society) and community resources (e.g. care homes)

Figure 11.2 Doing participatory case study and engaging in catalytic change.

• • Purpose: A strong sense of purpose and motivational drive is needed when there are many competing demands and responsibilities. This may come from a desire for the church to have its place in the wider community from a drive to improve ministry in care homes or the needs of an ageing congregation, for example. External recognition, for instance, from the Diocese awarding ‘dementia-fr iendly’ status, may also provide a sense of working towards a goal
• • Visibility: Sustainability could be supported by tangible outputs from the project, which served as a focus for future action and a reminder of the project goals
• • Leadership: The importance of visionary leadership, the engagement of both clergy and laity in this leadership and the need for consistency to support sustainability

The importance of presence: Anglicanism - an intrinsic case

The study identified the potential role of chin ch communities and clergy in facilitating dementia-friendly churches as part of an impact in the wider community. Arguably, church communities represent a particular mechanism for achieving social change and justice. Quash (2003) suggests that the Anglican church represents a ‘polity of presence’ within the social world, but in particular that ‘presence’ as Clnistians represents acknowledging and recognising each other as human beings, framed within being intrinsically in the ‘presence’ of God through our humanity. In this way, ‘God’s presence to us enables us to be open to one another in community’ (Quash, 2003, p.39). As such, church-based communities are well positioned to engage in empowering and participatory social change (Kesby et al., 2010). Furthermore, the focus of church communities on place and geographical areas is important in its potential impact on wider dementia-friendly ccmmnmities or neighbourhoods. Quash (2003) cites Jenkins in the desciiption of local clergy and the Anglican Church being focused on locality and representing a presence that is embodied, contextual and personal. This was certainly evident within the respective case studies. Indeed, Kesby el al. (2010) suggest that participatory work needs to recognise the power of social change that is spatially situated within specific places.

Challenging dementia as a ‘theological disease’ and shaping communities

Taking social action, through a participatory case study approach to develop dementia-friendly churches across the case studies, provided trausferrable learning through its action. This focused on a different dimension of‘presence’ (Quash, 2003). Although the study was set within an Anglican context, across five Mission areas, these collective cases have a wider implication. Arguably, the work highlights that engaging with people living with dementia is one strand amongst being ‘present’ within communities ‘in a way that is authentic, loving and liberating ... in the way that God is present to us and we are to him’ (Quash, 2003, p. 38). As Quash (2003) went on to explain:

One way looking ... [at] our calling [as Clnistians] is not to withhold our presence from those around us. Our calling as imitators of Jesus Christ is to bestow ourselves; to seek ever-new ways of being more frilly present to our brothers and sisters.

(P-39)

This challenges the notion of dementia as a ‘theological disease’, with a potential spiritual separation linked to a loss of identity. As Shamy (2003) argues, it is possible for persons living with dementia to carry their spirituality well into the progression of their disease:

The factors necessary for the nurture of spiritual well-being. This will include finding opportunities for the person with a dementia illness to sense, even momentarily, his or her own identity, experience relationship with others, self and the source of all being and to foster those activities which work towards the provision of a sense of meaning and purpose in one’s life.

(p.219)

In this sense, the church is seen to have a distinct role to challenge prevailing discourses in society and offer a model of community and engage with ‘public reflection upon the way society should be’ (Jenkins, 2003, p.198). As part of the participatory' case study work, Bob (F) highlighted the important role of the ‘church as disruptor’ in attempting to engage directly with social change in bridging the experience of dementia in its own and wider communities, even if on a small scale.

Ethical issues

At each stage of the PhD study, ethical approvals were given by the appropriate university ethics committee, including for the use of photographs shared in this chapter. In addition, agreement was gained from the Diocese of Bangor and Diocese of St Asaph (Church in Wales) to access clergy and laity within the Mission areas in North Wales, including particular churches. This was based on the interest of specific chinches in engaging in participatory work and subsequently providing informed consent.

Issues of reflexivity

At the heart of the participatory' endeavour represented by the dementia-friendly church initiative in North Wales across the Mission areas was the engagement of Bob (F) as a ‘priest-researcher’. This particular role embodied the principles and espoused practice of participatory case study, with a focus on emancipatory action based on co-constructing the research from the outset for social action and learning as a participatory project rooted in the community. However, as a collaborative act, the outcomes were varied, reflecting the diversity across church communities and the degree of leadership and the positioning of that leadership with either the clergy or laity or, indeed, at times, a shared enterprise between clergy and laity. Consequently, some community projects flourished, whilst a small number resulted in very discrete change or, in one instance, disengagement. This highlights the complexity of engaging in participatory case study work across a number of sites yet also the opportunity for learning as part of the across case analysis, benefiting from the richness of the intrinsic case but also the diversity of having analysis across the collective case (Stake, 2000).

Of particular interest in this case exemplar explored within the chapter is the discrete role of the researcher in a dual capacity as both a practitioner and researcher. Throughout the participatory case study work, Bob (F), acting as a ‘priest-researcher’, actively supported each of the church community initiatives, providing the training around what was meant by a dementia-friendly church. This is an innovative role which blends attributes previously cited in clinically based practitioner-research roles, but in this instance is focused on a particular form of practice and boundaries. It links into a cultural context of practice and relationship with the constituencies involved in this area of practice. In particular, the role of the priest has been under explored as a practitioner-researcher capacity. The work also involved collaborators drawn from the dementia community, centred on the involvement of Chris and Jayne as advocates to give voice to the experience of people living with dementia. The active involvement of Bob (F) as ‘priest-researcher’ required a significant characteristic centred on commitment in

Table 11.2 Lessons Learnt: 'Priest-Researcher’ Characteristics

framing action, through liaison, advice and also seeking to evaluate the impacts in terms of both action and learning within church communities, as well as any potential impacts within the wider community in the parish or Mission areas. Arguably, additional key characteristics of this role built upon commitment and focused on insight, flexibility and visibility. These are outlined in Table 11.2.

The role of ‘priest-researcher’ was an important facet of Bob (F’s) study and its conduct in facilitating social action and gaining an understanding of and theorising about the process and outcomes arising from the dementia-friendly church projects. This is an emerging area within the literature linked to the potential for community action. For instance. Barley (2014) developed an insider role as part of a participator}' action research (PAR) model as ‘priest-researcher’ within the Church in England. The work focused on a ‘socio-theological reflection in the development of pastoral policies and practice’ and through the priest-researcher role and a methodology (in this instance PAR) enabled a move ‘towards equipping the Church to be increasingly responsive towards contemporary society’ (Barley, 2014, p.176). Such work highlighted the advantages of ‘priest-researchers’ within this context. However, the direction of PAR and parameters for the ‘priest-researcher’ arguably privileges action above understanding and theorising, although learning is a mechanism for supporting action. For Bob (F), the development of being a ‘priest as researcher’ within a participatory case study approach, centred not only on operating dynamically along a reflexive continuum of being both insider and outsider, but also building on the parameters outlined by Reilly (2010) and developed by the editors of this book, to generate transferable learning about how to develop dementia-friendly chinches.

Furthermore, Bob (F’s) role highlighted the importance of foundation work in a participatory case study. In this case, the earlier part of Bob (F’s) PhD research work was central in informing the participatory phase. This initial work had identified the need for ‘preparedness’ within clergy for an active role to enhance the involvement of people living with dementia within the life of the church, as well as what was required to support people living with dementia and their families (Friedrich el a!., 2020). The findings from the earlier phase pivoting on a set of initial interviews with the clergy informed the participatory case study work by highlighting the groundwork needed for engaging the clergy in developing dementia-friendly churches. In particular, it also highlighted the gap within the evidence-base focused on the limited attention on the role of the laity and how this could be facilitated to achieve social change. The development of a dementia-friendly church through an engagement with the laity (as well as the clergy) was explored through the participatory case study work. It was at this juncture, during the evaluation of this initiative across the five case study areas, that the emergence of ‘chaplaincy’ as a model for change was uncovered.

The case-specific project work across the Mission areas illuminated what could be meant by a dementia-friendly church, identifying a pattern of activities constructed as meaningful by communities. The activities and impacts from the work undertaken were rooted in those chinch communities, resulting from a differing spectrum of leadership roles, with support from Bob (F) at cxitical turning points. However, the limits of the resulting participatory social action and learning were bounded within the clnnch rather than the wider community.

Conclusion

The chapter provides insight into the conduct of participatory case study work as a shared enterprise between Bob (F) as a ‘priest-researcher’, the clergy and laity across five Mission areas to develop a dementia-friendly church. The chapter highlights the power but also the complexity of developing participatory case study work. Importantly, it suggests that a small-scale initiative can produce catalytic change with significant potential impacts for conununities and delineates the potential significance of a ‘priest-researcher’ role and its future framing within a chaplaincy model.

Key learning points from the method used

• • Paxticipatory case study work with groups can extend to working with churches.
• • The ‘priest-researcher’ role is an important role and attribution but has been poorly described to date.
• • Dementia-friendly churches need to extend their influence and scope of practice.

Three key references

Adams, T. (2018). Developing dementia-friendly churches. Cambridge: Grove Books.

Lin, S.Y. (2017). ‘Dementia-friendly communities’ and being dementia friendly in healthcare settings. Current Opinion in Psychiatry, 30(2): 145-150.

Quash, B. (2003). The Anglican Church as a polity of presence. In Donnor, D., McDonald, J. and Caddick, J. (eds), Anglicanism: The answer to modernity (pp. 38-57). London: Continuum.

A recommended future reading list:

Aldridge, J. (2015). Participatory research: Working with vulnerable groups in research and practice. University of Bristol: Policy Press.

Biggar, V., Everman, L. and Glazer, S.M. (2019). Dementia-friendly worship: A multifaith handbook for chaplains, clergy’, and faith communities. London: Jessica Kingsley Publishers.

Friedrich, B., Woods, B. and Williams, S. (2020). ‘Just because the mind is confused, it doesn’t mean the spirit is confused’: Exploring the role of Anglican clergy in ministry for persons with dementia. Dementia: The International Journal of Social Research and Practice, doi: 10.1177/1471301220910572

References

Adams, T. (2018). De’eloping dementia-friendly churches. Cambridge: Grove Books.

Aldridge, J. (2015). Participatory research: Working with vulnerable groups in research and practice. University of Bristol: Policy Press.

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Part 4