Presence and Personhood: Investigating Christian Chaplaincy Care in Two Residential Dementia Units

Abstract

Dementia is a growing global health issue, particularly in developed countries with high and increasing life expectancies. Often, health care and social approaches problematise and see as defective people with dementia; they are viewed in terms of their deficiencies. The concept of personhood helps provide a theological framework of inherent worth, regardless of physical or cognitive capacity. This paper takes a case study approach and considers how the notion of personhood impacted the motivations and practice of two chaplains working in Aotearoa New Zealand residential dementia care settings. These chaplains offered a ministry of personal and sacramental presence. They provided simple ecumenical services, comprising elements that were familiar to the residents. They were motivated by and acted with love and compassion. The article concludes by noting implications for chaplaincy practice, including the importance of being personhood-affirming, acting out of love, and being expectant of and attentive to the discipleship and spiritual formation of residents.

1. Introduction

Dementia is a degenerative condition relating to cognitive decline that is experienced by a growing number of the global population, particularly in developed countries with high life expectancies (Gale et al. 2018). It advances in stages, first impacting executive function, and then physical capacity (Ryan et al. 2005). Care needs change through these stages. Initially, people with dementia can be supported at home. In the final stage, they may require hospital-level care. In the middle stage, secure residential care and significant support may be required to ensure health and wellbeing (Mitseva et al. 2009). As well as impacting physical and mental capacities, dementia also has social and personal implications, generally being viewed in terms of loss, defect, and deficiency (Ryan et al. 2005).

In practical theology, personhood-affirming strategies begin from the perspective that a person has value simply because they are a person; a medical diagnosis (of dementia, for instance) does not diminish their personhood (Ryan et al. 2005). Spiritual caregivers such as chaplains can draw on various approaches to ensure that personhood is affirmed in the residential dementia care setting. Regular presence and patient listening reassure residents that they are remembered and valued. Simplified worship services, that are comprised of familiar elements, stir memories of faith and remind residents of God’s love and presence. Creativity and playfulness may offer a means of connecting with past memories and joys. These personhood-affirming strategies can be motivated by love and compassion.

This article reports on case study research on the ministry practice of two Anglican chaplains working in residential dementia care facilities in Aotearoa New Zealand’s central North Island. It analyses the personhood-affirming strategies they employ, the motivations behind their work, and considers what other spiritual care providers working in dementia care can learn from them. By offering a ministry of personal and sacramental presence, the chaplains affirmed the inherent worth of the residents. Simple church services rekindled residents’ memories of faith and worship, enabling ongoing spiritual growth, despite cognitive incapacity. Motivated by love and compassion, the chaplains found joy and fulfilment in their work.

2. Dementia and Personhood

2.1. Dementia

Dementia is a blanket term relating to a decline in cognition that interferes with social, domestic, or occupational functioning. Rather than being itself a disease, dementia is best understood as a syndrome caused by various diseases, including Alzheimer’s disease, Lewy body disease, frontotemporal degeneration, vascular disease, Parkinson’s disease, and other age-related illnesses (Gale et al. 2018).

Dementia is a major contributor to the global health burden. Estimates suggest that globally, up to 7% of people aged over 65 years suffer from dementia, with a slightly higher prevalence (8–10%) occurring in developed countries with longer life expectancies (Gale et al. 2018). Ageing populations mean that the number of people impacted by dementia will continue to rise. Globally, around 50 million people have dementia, with 10 million new cases being recorded each year (World Health Organization 2020). Estimates suggest that by 2030, there will be 82 million people with dementia, and as many as 263 million in 2050 (Alzheimers NZ n.d.).

Dementia is degenerative. Over a period of fifteen to twenty years, dementia develops through mild, moderate, and severe stages, as first executive function and then motor function is lost. Care needs change through these stages. Initially, the person with dementia may be able to maintain independent living, perhaps supported by a spouse. They may be aware of their condition and recognise their difficulties in remembering names and places. Changes of mood and personality may occur, and disinhibiting frontal lobe changes might impact the individual’s ability to manage social situations and display appropriate responses to others. During the middle phase (usually lasting between two and ten years), their ability to live independently reduces. People with dementia might experience dangers from wandering or disorientation and may require significant care from others to ensure that they eat, drink, and sleep. This may necessitate a move to specialised dementia care. In the final phase of dementia, the brain’s ability to direct bodily functions is severely impaired. Mobility, speech, and swallowing are all impacted and hospital-level care is required (Ryan et al. 2005; Weston 2013; Ministry of Health 2013; Dementia New Zealand n.d.).

Clearly, dementia impacts people’s physical and mental capacities. However, that is only part of the story. Dementia also has personal and sociocultural implications. Because “dementia is conceived and conceptualised as a series of deficits, malfunctions and losses”, people with dementia are subject to a world that treats them differently (Swinton 2012a, pp. 41–42). Dementia is therefore not only neurological, but also relational in nature. Others’ responses to their condition exacerbates the relational difficulties experienced by people with dementia. A divide may be established between the healthy and the ill, and “the dementia sufferer is thus [seen as] a kind of alien, and caregiving tends to be viewed as action by superiors” (Kitwood 1993, p. 53). In addition, people with dementia often experience losses of “autonomy, self-efficacy and privacy”, as choice is diminished and rights gradually eroded (Johnson and Johnson 2007, p. 44).

Cognitive losses also impact spirituality and spiritual wellbeing. For instance, changes in communicative abilities mean that adaptations are required in order for people with dementia to participate meaningfully in spiritual activities. However, spiritual practices and responses are frequently retained in long-term memory (Ryan et al. 2005).

2.2. Drawing on Christian Theology: Acknowledging Personhood, Enjoying Mutual Relationality, and Re-Membering and Remembering

In his seminal work on dementia, Tom Kitwood (Kitwood and Brooker 2019) arrived at a relational definition of personhood as “a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being” (p. 6). John Swinton (2007) concurs, seeing personhood not as “an individual achievement … [but as] a gift of community” (Swinton 2007, p. 46). However, dementia is often viewed as making one less worthy and less important to society. This calls into question the very nature of personhood, asking “Is a person still a person when they do not know who they are?” If being and worth are linked to cognitive capacity (or perhaps to continuity of character), then the personhood of those with dementia is diminished, even negated. This can even be implied theologically, when the divine likeness is linked with rationality (Goodall 2014). While there is no denying that dementia negatively impacts a person’s autonomy and self-agency, and may change their personality, this does not make them of any less worth or value either to us (those without dementia) or to God. Nor does dementia prevent people from being open to God, reflective of God, or in a relationship with God, for “as long as there is breath the person lives within the love of God” (Goodall 2014, p. 254).

As Swinton (2007) notes, we are “persons-in-relation” (Swinton 2007, p. 46). Mutuality is inherent, as each person is “created to be in meaningful loving relationships with others and with God” (Swinton 2007, p. 40). Christopher Collins (2017) notes that “it is through Christ that our mutuality in communion with each other and with the Trinity exists” (Collins 2017, p. 63), and as Margaret Goodall (2014) reminds us, “through the work of Christ we take our place as God’s children, no longer needing to earn our way to God” (Goodall 2014, p. 253). This is good news for the Christian person with dementia; they are remembered as a child of God, regardless of their ability or inability.

For the Christian, ‘re-membering’ those with dementia means the community acknowledging this inherent status, and holding them as members of the body of Christ. Swinton (2007) notes: “To re-member a person with dementia is to offer them the kind of relational environment which mirrors God’s loving remembrance and unchanging embrace” (Swinton 2007, p. 59). God remembers those with dementia, and (as Rosalie Evelyn Hudson (2016) says), “it is God’s remembrance of us that is more important than our remembrance of God. Such knowledge cannot be removed from us. To be known is life giving, regardless of our ability to describe or express such an incontestable reality” (Hudson 2016, p. 56). Christine Bryden, writing of her own experiences as a woman with dementia, describes how this knowledge gives her peace, saying: “I will trust in God, who will hold me safe in his memory” (Bryden and MacKinlay 2003, p. 72).

2.3. Promoting Personhood in the Residential Dementia Care Setting

Spiritual caregivers adopt personhood-enhancing strategies, enacting their belief that every person is important, regardless of their limitations. They can do so by the simple act of offering a “ministry of presence” (Holm 2009), as well as by providing meaningful opportunities for worship. A sense of playfulness and fun can enhance interaction.

There are two elements to the concept of ‘being present’. The first is the need to simply spend time with those with dementia, as spiritual caregivers visit dementia units and take time to build relationships and trust with the residents. In this, they are being present as the body of Christ to them. The second way of being present relates to the temporality of the moment. This prioritises the temporal present over things that may be difficult for the individual to remember, such as their recent past life, or current events; or things that are difficult to imagine, such as the future.

While recent memories may be lost, more distant memories may be able to be recalled and appreciated. This might include spiritual practices, as precognitive and physical memories are stirred through participating in worship activities (Swinton 2014). Although such moments of engagement may be brief, the residual positivity may last much longer (Shamy 1997; Swinton 2014; Behers 2018). Eileen Shamy (1997) sees the use of music, familiar liturgies, and religious symbols as memory cues that point the way back to the person’s positive relationship with God. She notes that “these symbols are the keys to storehouses of rich and treasured memories” (Shamy 1997, p. 151). Physical objects that can be held or smelt may also help to connect the care seeker to a memory from the past, including memories relating to their faith (Behers 2018). While the potential benefit to the care seeker is paramount, employing such objects also helps the caregiver by providing a way to initiate engagement, thus building their own confidence (Bachand-Wood 2016).

Toys can also provide the caregiver with an avenue into the world of the person with dementia as they playfully stimulate memories and/or a sense of fun. Once again, toys have a secondary benefit of reducing the anxiety of the spiritual caregiver, giving them a tangible object to work with. The sense of humour of a person with dementia can be tapped into in cognitive ways (for instance, as a support group discusses their memories, and acknowledges their lack of them (MacKinlay and Trevitt 2015)), or as the inner child is called forth in playful giggles (Bachand-Wood 2016; Shamy 1997).

3. Research Design

This research explores the practice of two chaplains working in residential dementia care units, attentive to two core questions. The first considers their ministry practice, including how they built relationships with those in residential dementia care, the tools they used, and the form of pastoral care and worship services they provided. The second question considers the theological beliefs and values that underpinned their work and sustained them in their ministry.

3.1. A Work of Practical Theology

As Swinton and Mowat (2016) assert, “Practical Theology is critical, theological reflection on the practices of the Church as they interact with the practices of the world, with a view to ensuring and enabling faithful participation in God’s redemptive practices in, to and for the world” (p. 7). In being critical, practical theology can simultaneously value, challenge, and test accepted theological assumptions. It engages in theological reflection on the work that Christians are undertaking in the world and is attentive to the continuities and discontinuities between the world and Christian faith, asking whether actions taken are “faithful to the script of the gospel” (p. 9). Finally, practical theology promotes “faithful presence and [ongoing] action” in the world God loves (p. 9). By these criteria, this is a work of practical theology.

3.2. Case Study Research

Methodologically, qualitative case study research is employed, enabling an in-depth description and analysis of the work undertaken by two chaplains working in residential dementia care settings (Yin 2018). The strength of this approach was the ability to closely investigate the work and motivation of each chaplain. The corresponding weakness or limitation is the small sample size. In part, this small sample size is representative of the lack of paid chaplaincy care provided to people with dementia in Aotearoa New Zealand, as is also the case overseas. While there is scope for further research on different contexts, this article adds to the limited literature on chaplaincy among those with dementia (Palmer et al. 2020). Older adults in New Zealand are predominantly affiliated with one of the denominations of the Christian faith.

3.3. Recruitment and Data Collection

The two participants (cases) were purposively sampled, according to the following criteria: They are ordained ministers, with paid roles as chaplains, having at least five years’ experience working as chaplains in a secure dementia unit, and being funded by the rest home. While there is no central (or local) registry of rest home chaplains, it is considerably more common that chaplains are either volunteers (lay people or retired clergy), or clergy who visit the facility as part of their parish-based ministry. The participants’ paid dementia-specialised involvement is uncommon.

The data were gathered using semi-structured interviews, using open-ended questions to engage in a reciprocal, reflexive, and critical process of “meaning generation” (Galletta 2013, p. 78). While the same core questions (

Table 1. Interview Questions.

What you do:

Tell me about your work at the dementia unit. What do you do when you visit?

(Do you have a set routine?)

What worship services do you offer

How do you engage in pastoral care?

How do you build relationships with residents?

What sorts of tools or materials do you use with the residents (why, how, how often)?

How do they help enhance your ministry?

Are you deliberate in engaging the residents’ senses? How do you do this?

What principles lie behind your work?

Do you have a particular model of care that guides your work?

(Can you tell me about it?)

What theology underpins your work?

How do these principles and/or theology impact on what you do?

Getting involved and staying involved

How did you become involved/why do you do this work?

Can you tell me what sustains your ministry?

(Check back in about principles/theology and whether/how they help sustain)

Joys and challenges

What particular challenges are there in your role, and why?

What brings you joy, and why?

) were posed to each participant, their answers directed the emerging lines of inquiry. The interviews were audio recorded and transcribed, initially using Otter.ai, after which they were checked and edited thoroughly for accuracy. Both interviews were undertaken in 2020 shortly after Aotearoa New Zealand’s first eight-week stint at COVID-19 Alert Level 4. This strict lockdown required everyone except for essential workers to shelter at home. While one participant was designated an essential worker and permitted to visit his dementia unit during Alert Levels 3 and 4, the other participant could only return at Alert Level 2 (when work outside the home was permitted for all). The participants’ interview responses were influenced by this context.

The research was reviewed and approved by the School of Arts Ethics Officer at the University of Otago (approval number: D20/205). Participants were provided with an information sheet about the research and indicated their willingness to participate by signing a consent form. Pseudonyms are used to ensure anonymity.

3.4. Data Analysis

While analysis was attentive to extant themes from the literature, other codes and themes that emerged from the data were also recorded. All codes were then cross-referenced to identify similarities, or different ways of expressing the same ideas. The recordings were replayed to ensure that any nuances of data were not missed and, as themes emerged, recordings were checked to ensure the validity and frequency of those themes. For instance, Annie listened closely for the repetition of words that described a key idea, such as ‘being with’, or being physically close to a resident. She then identified synonyms in the text (for example, presence) and replayed relevant sections to find the context in which such presence was described. Inter-relationships between the themes were also explored. Linda Brown (2010) describes this as an examination, “for connections, relationships and links to each other as well as the focal points of the research” (p. 10). The core themes that defined the theological underpinnings, characteristics, and practice of the spiritual caregivers are explored in the next section.

4. Results

The research participants, Bob and June, are ordained ministers, each employed for 10–12 h per week as chaplains in secular rest homes that include a separate secure dementia unit. Although both are Anglican (Episcopalian), they believe they offer an ecumenical ministry. Being in paid chaplaincy roles provides them with what they both describe as an ‘authority’ to operate. Their formal title and role also mean that they are supported to be there, including by staff who collect residents for worship services, promote their wider ministry, and prioritise their presence in the home, including by making space for them in the recreation programme.

Both chaplains exemplify the notion of valuing personhood as they engage in their work. They offer a ministry of presence to the residents, both personally and sacramentally. Both have adapted simple ecumenical church services, incorporating music and prayers potentially familiar to those they minister with. They see their work as being motivated by compassion and love (both interpersonal and divine) and they respect and value each resident, recognising them as people with pasts, lives, families, and abilities.

4.1. A Ministry of Presence

While neither caregiver used the phrase ‘ministry of presence’ in the interviews, the way that they described their words, actions, and engagement with the residents was congruent with it. Each described two main ways that they worked to build connections with the residents. First, by spending time listening and being physically present with the resident, and secondly, by their sacramental presence; through worship services, sharing bible stories, and the Eucharist.

4.1.1. A Personal Presence

Offering a ministry of presence begins with the caregivers regularly and consistently spending time with the residents. On arrival, they stop to greet and check in with the staff, before moving into the main areas to meet the residents.

Their purpose in the home is simply about presence and care. They are able to sit down with the residents with no expectations other than to listen and to be available to them. This contrasts with the residents’ interactions with others; interactions that are usually based around their care needs. Both Bob and June describe offering a physical presence, listening to, and engaging with the residents, and taking an interest in the stories that they share no matter how repetitive they may be. As Bob notes, “There’s one woman who was terribly upset by the Christchurch [mosque shootings]. … So, you just listen and reassure her that it’s all right and that the perpetrator’s being dealt with, and she calms down”. Bob patiently and attentively listens to her story, offering comfort and reassurance, without trying to stop or change the story.

While the cognitive ability of the residents usually makes conversation difficult, sometimes Bob or June is rewarded by seeing glimpses into the residents’ past. June says: “We find things out from them. … We found out one of the residents used to go swimming. He lived near a river, and they remember stuff from their past and it connects them with their present. We find a way to connect in”. Such discoveries, resulting from patient listening, both strengthen the bond with the chaplain, and “give the staff something to work on as well”. Being physically present with the residents enables a sense of companionship and encourages conversation—however limited this may be.

This personal presence is not without challenge. For example, Bob has been threatened by a resident, and both Bob and June have residents who fall asleep, are physically unwell, shout, or cry during worship. Despite this, Bob and June remain willingly present with the residents.

4.1.2. A Sacramental Presence

In addition to offering a personal presence, Bob and June offer a sacramental presence, representing the Body of Christ both by their presence and through the celebration of the Eucharist. Without these chaplains, scripture might not be shared, and the Eucharistic liturgies would not be held.

June demonstrates this sacramental presence in the clerical robes that she puts on before worship. She notes, “[The residents] have been looking at me saying, ‘We know you but, we [are] not sure who you are’ … and as soon as I put my robes [on] I tell them, ‘I’m gonna turn into an angel!’ And it dawns on them, ‘I know who you are!’” June’s use of robes defines her difference; she is June, the chaplain, and the minister. She calls the residents to worship, pushing her tea trolley of religious items ahead of her down the corridor as she shouts: “It’s church day! It’s church day!”

4.2. Offering Simple Ecumenical Church Services

Bob and June offer simple ecumenical services that are familiar yet adapted for the cognitive abilities of the residents. These services allow the residents to access vital aspects of faith, spiritual nourishment, and the word of God.

For both chaplains, music acts as a vehicle to call the people to the service, to engage them in it, and to remind them of their spiritual past. June describes how her services begin:

We go up into their lounge where there are armchairs, and I sit at my table in front of the big TV, which I switch off. The music’s playing [and] they will sing the hymns. They are singing away [and] they might only know the first verse [but] that doesn’t matter. If it’s a hymn and [has] got a chorus or ‘halleluiah’ they join in. So that connection with old and well-known hymns is huge.

To encourage the residents to participate, June plays music that is familiar to them: hymns “sung by choirs of cathedrals so they’re really well sung”. She “crank[s] the volume up, [which] … calls them to worship … [and] helps guide them as to where they’re supposed to [come to]”. This familiar church music, “resonates with their past” and she uses familiar lyrics, including “thees and thous”. As Bob says, “If there’s anything they will know and sing along to, it’s traditional hymns, and the Lord’s prayer”.

While they use familiar liturgical resources to draw on the residents’ memories, they adjust them for their cognitive capabilities. For instance, June says, “I don’t read from the Bible as such. I tell [the Bible story]”. With traditional prayer books being physically and cognitively challenging, they use simple service sheets to help recreate the liturgy’s familiar structure and cadence, and to aid participation.

The chaplains adapt the services to allow people to participate as much or as little as they are able. They have no expectations that the residents will comply with usual social norms, such as not speaking in a service, or sitting still. June describes how she “doesn’t have to rush: [she] can take time”, and they both “read the room” as they are leading services, being relaxed as residents move in and out of the room, sleep through the service, or get taken to the toilet. June noted, “We have multiple funny conversations, even during the service, someone will say something. … I go with the flow”.

Both Bob and June enable the residents to partake of the Eucharist, for as long as possible. June reports: “When they start spitting the wafer out, … [or when] it goes in and out of their mouth and then gets [put] on the chair beside them, … that’s the last time I give them communion, I give them a blessing after that”.

In addition to regular services, June adapts and uses material from Messy Vintage.1 Messy Vintage employs a bible story and a craft-based activity, such as drawing or colouring in, to engage older adults with a bible message or to demonstrate an aspect of faith. Because of their diminished cognition, June adapts this further for her residents:

It’s simple right down to the most simplistic I could make it. Their attention spans are so short: more so than those in a rest home. They don’t have the conversation [ability], some never speak to you. I had to take it right down. It’s basically an introduction (sic) way of connecting in a story, a hymn, we just celebrate! [For example, we celebrate] God’s gifts of autumn.

While ensuring simplicity, June does not want to denigrate the residents by treating them as children. For example, when they colour in, she ensures the themes and pictures coloured are geared for adults not children. June describes her experience of Messy Vintage with excitement; she is passionate about spending that time with the residents, who interact there in different ways than they do in a church service. However, she struggles to find others willing to lead it when she is unwell or on leave.

When drawing on Scripture, Bob “put[s] it into terms that will be reassuring and encouraging for the residents”. He emphasises that the residents are not alone: that Jesus is with them, by “talk[ing] about that in very simple terms, [saying things like] ‘You never, never need to be alone because Jesus is always there.’ [or] ’If you’re feeling frightened at all, just call on the name of Jesus.’ They are very, very simple terms, but they’re things that resonate with the residents”. Bob also gently reminds the residents of familiar bible stories.

June also retells bible stories, saying to them: “This is a story that Jesus told”, and then “tell[ing] the story with embellishments”, seeking to make connections with the residents’ lives and experiences. In doing so, she makes the bible stories familiar to the residents, evoking memories and exploring concepts that they may be able to grasp.

4.3. Acting with Love and Compassion, and Enjoying Reciprocity

Both Bob and June spoke about the love they had for their rest home residents. As June said, “I just grew to love them”. This love was mirrored in the care that staff showed towards residents. Significantly, it was also experienced reciprocally with the residents: chaplains both gave and received love, to and from the residents. Bob noted that while they were motivated by love (“that’s where chaplaincy ought to start … a giving ministry”), at the same time, “out of it, you receive”.

Transcending their own love for the residents was their desire to bring to them the love of God. June excitedly described telling the residents of God’s love. For her, the primary purpose of her visit was to communicate God’s love for them:

I’m forever saying, “God doesn’t mind if … you’ve … temporarily forgotten who he is. God doesn’t mind that you can’t remember the stories of Jesus”. … I use Psalm 139 a lot, because that’s the one that [says] “God knows you”. … It [describes] that love God has [for] them. That God thinks they are special. That God treasures them. And it doesn’t matter that we’re getting older, we’re forgetting things, and we’re getting a bit wobbly on our legs. God doesn’t mind. We are special to God and God loves us. Full stop. And that’s the biggest thing: … That they are unique, that they are treasured by God. God loves them. God loves you. I will often go in and say, “God loves you” and I use their name. And “God loves you. And God loves you. And God loves you”. … and I use their names. That’s if I can remember their names!

Again, there is reciprocity here as June delights in these interactions: she has “so many good memories of some of the residents”. One resident said to her, “Jesus loved me” and June replied, “Yes, Jesus loves you!” She recalled that “the grin on [the resident’s] face, it bursts your heart!”

While Bob’s demeanour was quieter, love and ‘compassion’ were also the focus of his time with residents. Both June and Bob demonstrate the gospel imperative to love one another and they bring God’s love to the forefront of the residents’ lives.

4.4. Supporting Personhood, Irrespective of Ability

June and Bob’s work with the residents upholds their personhood: their dignity, autonomy, and ability to participate in the world around them. When Bob and June visit, they use the residents’ names, engage and interact, and treat the residents as persons of value. June describes being calm, and taking her time to be with the residents, “So I can take the time, I don’t have to rush. We can find pages [in the services], we can cope with residents who want to come in from outside or go out, or staff coming in”. They do things together, re-emphasising that June is being with the residents, not doing things to them. This cooperative process supports the abilities of residents, rather than highlighting their deficiencies.

Bob stresses the need to make life ‘normal’: to reinforce the sense that the lives of the residents are ordinary and usual, in contrast to a belief that people in dementia units are different and need to be hidden away. He says: “It’s making the rest home residents’ lives as normal as possible [that is important]”. This includes offering church services for those for whom “church is familiar”. It also involves everyday discussions. Bob describes talking to a woman about her son. In this small interaction, he recognises that, “just hearing her reconnect and talk about … her son [and] … what he’s doing [is so important]”.

In each of these ways the chaplains demonstrate that they value personhood. They are attentive to the uniqueness of each resident and patiently present with them. The chapel services and other activities that they offer are tailored to the residents’ needs and seek to tap into their liturgical memories. Their ministry is motivated by love.

5. Discussion and Implications

How do these findings connect with the literature and what implications do they have for dementia care chaplaincy? Three areas are explored next. Dementia care chaplaincy needs to be personhood-affirming. It should be characterised by a loving presence. It can be attentive to discipleship and spiritual growth.

5.1. Affirming Personhood

A personhood-affirming approach is essential for dementia care chaplaincy. This was evident in the care provided to residents: care attentive to both social and spiritual needs. Like Shamy (1997), who describes affirming people’s stories without “buying in to their false reality” (p. 155), Bob described hearing stories distorted by the dementia lens through which the teller viewed life. He did not silence these voices: they were not re-directed to alternate ideas or distracted to other things. Their stories were accepted, and they were valued as persons. In the context of disability, Swinton (2012b) helpfully contrasts inclusion and belonging, saying “inclusion is not enough” (p. 182). Human persons belong to God and to one another: they are missed when they are absent. June and Bob took such an approach, embodying Christ-like love as they knew residents by name, and valued their lives, past and present. June and Bob adapted the worship services to suit the capacity of the residents, ensuring that they could participate. In each of these ways, Bob and June held residents in high regard, upholding their personhood with respect and dignity. In this, they helped meet spiritual needs relating to “being known as a person” (Ryan et al. 2005, p. 110).

5.2. Motivated By, and Acting with Love

Although “the central Christian story is a love story” (Scheib 2014, p. 705), and love was linked in the literature with personhood, relationality, and mutuality, it was not described in the literature as a particular motivation for action or ministry. Bob and June, however, were clearly motivated in their work by love and compassion. This was evident as they described the personalities of the residents, outlined conversations they held with them, and noted personal characteristics they delighted in. They visited because they cared for staff and residents alike.

Love was illustrated in June’s patient engagement with a resident, even when “she gabbles away in another language … [and doesn’t] make any sense”. June listens, nods, and acknowledges the woman. She values her words despite the lack of sense or understanding. She affirms her as a person and loves her. Bob and June also received love from the residents. This giving and receiving of love helped meet the community-related spiritual needs of the residents, enabling them to both feel love and offer love (Ryan et al. 2005).

In addition to their own love for the residents, June and Bob wanted to remind the residents of God’s love for them (Ryan et al. 2005). In this, they sought to be “active and responsible agents of love” (Scheib 2014, p. 715) by being present, and engaging with a group of people often ignored by society.

Once again, they were valuing the personhood of the residents, recognising their intrinsic worth and value. Swinton (2012a) describes how different people have contrasting perspectives of dementia. The doctor sees it medically, in terms of deteriorating brain function. The son sees his mother struggling with changes in identity and trying to maintain a sense of self. He sees her actions as responses to the impact of a disease and separates the disease from the person. Bob and June have a different perspective again: they love the person, in the present moment, without requiring knowledge of their past identity. They see the person as they are, beloved of God, and unforgotten by God (Goodall 2014; Ryan et al. 2005).

5.3. Attentive to Discipleship and Spiritual Formation

While dementia takes away much from the individual, God has not forgotten them. Bob and June expected that the residents might continue to grow in their relationship with God. Such an expectation is grounded in a holistic understanding of discipleship as enabling “the experience of the love of God with the whole of who we are” (Swinton 2015). The spiritual caregiver’s goal, therefore, is to support this experience of God’s love, whatever the resident’s capacities and incapacities.

Bryden notes how dementia can threaten one’s spiritual identity, as others assume “that the limits due to our failing cognition place us beyond reach of normal spiritual practices, of communion with God and with others” (Bryden and MacKinlay 2003, p. 71). However, “as [her] cognition fades, [her] spirituality can flourish as an important source of identity” (p. 71). Chaplains can support this flourishing by their faithful presence, offering simple worship services with familiar elements, acting with love, and supporting the personhood of each resident (Ryan et al. 2005).

5.4. Limitations and Future Research

The research was limited to case studies of two Anglican chaplains working in residential dementia care settings in Aotearoa New Zealand. Future research can consider the work of additional chaplains, including those of other denominations and religions, and well as secular chaplains. Further research on dementia care chaplaincy in other countries is also needed.

6. Conclusions

While dementia is a degenerative condition that ultimately limits cognitive and physical abilities, Christian theology recognises that people with dementia are still valued persons, loved and held in the memories of others and of God. Spiritual caregivers can employ a range of approaches to ensure that personhood is affirmed in the residential dementia care setting. This article has explored the work of two residential dementia care chaplains in Aotearoa New Zealand, outlining the motivations of love and compassion that lie behind their work, and describing the ways that they affirm the inherent value of the residents. By their listening, their personal and sacramental presence, the provision of simple church services, and an attitude of valuing personhood, they strengthen the wellbeing of dementia care residents and help to facilitate their ongoing spiritual growth. The work of these chaplains can encourage others to offer similar ministry within dementia care settings.