Abstract
This article investigates the formation of meaningful pastoral care relationships by chaplains with older people with dementia in nursing homes. The study responds to the recently highlighted need for theological exploration of wellbeing by providing a theological analysis of how a meaningful pastoral care relationship is formed from chaplains’ perspectives. The study employs thematic analysis of ten interviews to uncover core themes. These include the embodied aspects of pastoral care, which highlight the non-verbal dimensions of pastoral care; emotional support, emphasizing the chaplains’ role in providing comfort and empathy; interpersonal relations, detailing the dynamics between chaplains, older people with severe dementia, and the care environment; and supporting the personal relationship with God, underscoring the individual’s religious and spiritual connections. This research contributes to understanding how theological considerations inform pastoral care practices, offering insights into the nuanced religious and spiritual needs of older adults with dementia within a nursing home setting.
1 Introduction
Recently in the Journal of Empirical Theology, a call was made to renew theological thinking and understanding on wellbeing (Oviedo 2023). By analysing the experiences of hospital chaplains working in Finnish nursing homes for older people, the aim of this article is to respond to this call in the context of wellbeing in pastoral care. We will focus on one question: How do Lutheran chaplains form a meaningful pastoral care relationship with older people with severe dementia in nursing homes?
In ageing societies, the wellbeing of older persons will become an increasingly important issue. In Finland, the number of people aged 85 and over is expected to more than double by the year 2050 (Finnish Institute for Health and Welfare 2024). As populations age, the prevalence of dementia will unavoidably increase (Parra et al. 2019). The worldwide number of people with dementia is expected to double by 2030 and even triple by 2050 (World Health Organization 2019). In our study, we use the concept of dementia as a general term for the loss of memory, language, problem-solving, and other thinking abilities that are severe enough to interfere with daily life (see Alzheimer’s Association 2024). Since dementia debilitates a person’s cognitive capacities, such as thinking and remembering, it challenges their chances of maintaining lifelong coherence and continuity, i.e., holding on to a meaningful life as described in previous research (e.g. Vissers et al. 2023).
From a developmental perspective, it has been suggested that older people need to find coherence and acceptance of life events and make peace with the finite nature of life in order to find comfort and ease in the last stage of their lives (e.g. Ganzevoort 2010; Ganzevoort & Bouwer 2007; Tornstam 2005; Erikson 1994). Nygård (2022) explores the existential dimension of health and wellbeing as an ongoing quest to find and create meaning, especially in challenging circumstances. This involves navigating the complexities between suffering and re-orientation, and between meaning and meaninglessness. Experience of wellbeing, especially of holistic or existential wellbeing, is closely connected to finding life meaningful (e.g. Visser et al. 2017).
Chaplains have reported that supporting the experience of meaningfulness in nursing homes is emotionally demanding, require time and commitment to older people (Saarelainen et al. 2024; Kitzmüller et al. 2017). With advancing care needs and age, meaningfulness in life may come under considerable pressure, leading to existential concerns (e.g. Sundström et al. 2018). Moving into nursing home has found to be particularly challenging. Life in residential care as such represents a challenging living environment for older people, where they face existential concerns about the finality of life and isolation (Saarelainen et al. 2024; Larsson et al. 2024; Slettebø et al. 2017).
Previous research indicates that religion can be a significant source of comfort, especially for older individuals facing challenging times (Saarelainen et al. 2020; Vähäkangas et al. 2021). It offers a sense of stability and continuity amidst the experiences of loss and change. Engaging in a personal relationship with God can provide support and solace, even during moments of deep despair (Vähäkangas & Saarelainen 2019). For older adults, who may be experiencing decline in physical abilities and autonomy, religion can offer a form of empowerment. This empowerment comes from the understanding that, through a spiritual connection, control over one’s life is not entirely relinquished. Moreover, religion imbues life with a broader sense of meaning; it introduces a belief system that instils profound hope, anchored in the sacred (Emery & Pargament 2004).
2 Theoretical Underpinnings
Encountering ageing and memory loss challenges the meaning system of an individual. Meaning in life comprises the elements of meaningfulness, crises of meaning, and sources of meaning. Within this theoretical framework, meaningfulness stems from a “fundamental sense of meaning” that includes discovering one’s life as coherent, significant, directed, and involving a sense of belonging. Crises of meaning occur when these elements are disrupted. What an individual discovers as a source of meaning in life, is very personal (e.g. Schnell 2009). Further, within late life, the meaningful components of life are likely to change. A recent literature review showed that there are both general and unique components that make life meaningful in later years. To discover life as meaningful, people generally seek to experience coherence and purpose. In late life, the ability to reconcile the past, discover fulfilled purpose, and feel coherence and continuity become significant elements contributing to meaningfulness (Vissers et al. 2023).
As a concept, meaningful relations stem from theories of meaning in life and relationality and it incorporates both experiencing and losing meaning in life as well as the opportunity for or lack of human encounters (Ellis 2013; Park 2013). The awareness of approaching memory loss changes close relationships. Still, for people with dementia, the experience of meaningfulness in life stems from the possibility of spending time with their loved ones and being able to participate in meaningful activities (O’Rourke et al. 2015). Relational theory stresses that a person’s identity is constructed through relationships. Relational theology begins with a personal relationship to God or a higher power and to other people, both of which are important for one’s wellbeing (Ganzevoort 1998; Ganzevoort 2010).
Previous research challenges the idea that dementia results in a loss of personhood that influences a person’s ability to keep up relations (Swinton 2012; 2014). The most recent research reveals that people with dementia can be involved in meaning-making and search for relations (Isene et al. 2022; Bryden 2018). Although relations change after memory loss and the process of meaning-making might differ from that in previous life, people living with severe dementia still need support to find meaningful relations while they are in a care home.
When studying people with dementia, it becomes crucial to comprehend that many current definitions of religion and spirituality assume that a cognitive component is required (see e.g. Pargament 1997). For this study of Lutheran chaplains, we still accept some main ideas of religiosity being a connection between an individual and God or the transcendent (e.g. Pargament 1997). We focus here on lived religion, understood as a myriad combination of practices with a biographical nature and process that changes over a lifetime (Pirhonen et al. 2023; Ganzevoort 1998). In this vein, spirituality is comprehended as a larger framework of life including the transcendent and strong personal aspects. As our earlier studies indicate that religiosity and spirituality provide meaningful experiences and connectedness for older people with dementia, we are inclined to question the significance of the cognitive component of religiosity and spirituality (Saarelainen et al. 2024).
3 Methods
3.1 Ethical Considerations
Ethical approval for the research was applied from the ethics committee of the University of Helsinki. The interviewees were provided with information about the research beforehand, and they were given an opportunity to ask questions. They were informed about the right to terminate the interview or to withdraw from the study without giving reasons. Principles of data protection and anonymity were clarified. The interviewees gave their oral consent, which also was audio recorded. All the mentioned names are pseudonyms to secure anonymity of the persons involved in the research.
3.2 Data and Analysis
We utilized qualitative research frame to build a holistic description to deepen the understanding of a social phenomenon (Kalu & Bwalya 2017), in our case of meaningful pastoral care relationships between chaplains and older people with dementia. The thematic analysis is based on interviews conducted with ten chaplains of the Evangelical Lutheran Church of Finland (ELCF) in 2020. In Finland, chaplains who focus on pastoral care or work mainly with older adults may only be found in large, urban joint parishes. In smaller ones, pastoral care, counselling, and visits to nursing homes are taken care of by parish clergy. Thus, we contacted some joint parishes with research information, and asked if they employed any suitable informants. Four informants were reached this way, and the rest were found using snowball sampling, i.e., interviewees gave us names of suitable colleagues. One researcher conducted all the interviews and, during the process, observed the sufficiency of the data. Ten interviews were perceived to be enough. All interviewees were ordained ministers of the ELCF. For simplicity, from here on we will call the interviewees chaplains.
Nine out of the ten chaplains were women, which was quite comparable with the wider situation. Seven of the chaplains worked mainly in nursing homes, two worked in rehabilitation hospitals where most of the residents were older adults with dementing illnesses, and one worked in a central hospital, also visiting nursing homes nearby. Due to the active COVID-19 pandemic, all the interviews were conducted by phone and audio recorded. The duration of the interviews was 755 minutes in total. Audio records were transcribed verbatim, totalling 197 pages of text, and extracts cited here were translated from Finnish by the authors.
The topics of the thematic interviews included the chaplains’ view of COVID-19 restrictions in nursing homes, encountering dying people and people with severe dementia, the nature of pastoral care in nursing homes, religious expressions and activities in nursing homes, and means to maintain the interviewees wellbeing at work. We utilized data-driven qualitative content analysis to identify repeated patterns and themes in the data (Rentz, Carrington & Badger 2018). In this case, the first-round analysis aimed to isolate the excerpts in which the chaplains described the nature of pastoral care in nursing homes. When the relevant sections of data were identified, these were openly coded, after which similar codes were reorganized. In the final stage, patterns forming themes were identified.
Formation of meaningful relationship
Citation: Journal of Empirical Theology 37, 2 (2024) ; 10.1163/15709256-20240009
We found that forming a meaningful relationship within the context of pastoral care of people with severe dementia seemed to be quite multidimensional. These findings and the detailed structure of the analysis are presented in Table 1 above.
4 Results
4.1 Embodied Aspects of Pastoral Care
The interviewees portrayed their understanding of pastoral care with older persons including both religious and spiritual elements. The main theme, embodied aspects of spiritual and religious care, forms from three interlinked sub-themes: maternal attention, embodied connection, holiness of the body, and fostering safety.
Maternal attention was depicted by the chaplains as one of the most primordial aspects of spiritual care. Chaplains described a link with the mother – child relation and to the physical body itself. For instance Kaisa, who talked about connecting with a person with dementia, described the encounter similarly to a newborn baby’s longing for her mother’s arms:
KAISA: it would especially be important if the carer or pastor could, for that moment, be the mother that feels safe and holds one’s hand, who caresses, and who sings or hums, and communicates a feeling of safety. Who, even if one’s mother isn’t actually there, that yearning, the yearning of a child, the baby’s yearning to be held – that is always in us.
When a person is out of the reach of words, Kaisa utilizes active presence by humming and holding hands. She tries to reinforce the other person’s sense of security in a way that resembles motherhood.
Pekka calls spiritual care of people with severe dementia “feminine by nature.” He pictures interpersonal relations as an embodied issue:
PEKKA: For me, the deepest feature of memory disorders is the severance of connections. That sense of connection, it’s complex, it can even be severed to oneself, one can become disconnected. However, in a flash, this connection may be switched on, through feelings, sensations on the skin, embodied touching, warmth, caressing, through compassion … There remain imprints of memories in one’s skin, and the like, scents and all sorts. Those who do remember can lean on this and through this aim to understand the lived experience of the person with the memory disorder and thus support them.
In Pekka’s quotation the embodied nature of the encounter is vividly depicted. He describes how severe dementia may totally disconnect a person. Not only connections to other people break, but also a person’s connection to themselves. We interpret Pekka’s quotation to mean that when words lose their relevance, the body itself becomes the medium of communication: when the mind does not remember, the body does. Pekka describes how a person with severe dementia may remember through their individual senses. Spiritual care, then, becomes a work through the senses as well. Other chaplains have very similar perceptions. Anneli interweaves religious contents such as the most familiar psalms and prayers with using a gentle voice and holding hands. Helena, for her part, speaks about the holiness of the human body.
HELENA: because that may be the core of what one is, somehow … that we are, all of creation is pure, it has God’s holy handprint. In the sense that one can rely on the Creator’s presence is God’s creation. This is holy in itself. It’s a mystery, it cannot be explained but one can trust it and also experience it.
In Helena’s view, the body itself, with or without any cognitive capacities, is holy. Her words indicate that we are all God’s creatures and reflect the Creator in a mystical way.
All the chaplains’ work among older people with severe dementia seems to circle around providing sense of security. Chaplains discovered that losing connections to other people and even to oneself is a definitive character of dementing illnesses. Therefore, gentle voice and touch, comfort, active listening, and sharing God’s love all aim to provide sense of security by telling the other person that you are not alone. Kaisa grasped this shared idea by saying:
KAISA: [I]t is about supporting their sense of security and reinforcing it. In this case, the phrasing used about God or Jesus must support this sense of security. But it is holding someone’s hand, being near, it can be reading a psalm, singing, prayer. But what it isn’t, is something that involves a strict structure. It can even be a short encounter, like, that time … whatever it is, maybe it should be safe.
In Kaisa’s words, safety seems to be a prerequisite for her actions. In all her encounters with the older people, the main idea is to provide and support the experience of being safe. The main message that chaplains wished to provide was “I am here for you now, you are safe.” Providing safety often included embodied aspects of religious and spiritual care; yet safety was also a starting point of deeper emotional encounters, which are presented next in more detail.
4.2 Emotional Encounter
As we have seen, severe dementia makes communication more and more bodily. Therefore, according to our interviewees, comfort in hardships requires active presence and willingness on the part of the chaplain to connect with the older person on an emotional level in both good and bad times. Assertion of positive emotions, eradicating hardships, and stamina in encounter build up the main theme of emotional encounter.
Chaplains found that assertion of positive emotions was linked to their own ability to form a positive and warm connection with the older person with dementia. Pekka gives a detailed description:
PEKKA: And if you encounter someone with warmth, giving an embodied touch, using kind words, it feels good. You acquire a gentle tone in your voice if your touch is re-spectful, generous, and unintrusive, as well as your voice. If a person has hearing, you can speak to them from very nearby. And they might even join you in song if it’s familiar to them … So some of the songs and the oldest ones remained. It was possible to re-call even three songs even though the person had been removed from their home. At the care home there was only one, a lullaby that their mother had sung. And there it was, spirituality could be humming that lullaby and grasping onto their mother’s memory, using a mother’s touch, stroking the head and gentle touch.
Pekka asserts good memories of early childhood, trying to form an emotional connection with the older person. The connection is sought through embodied practices and bodily gestures. It seems that the more severe the dementia, the more important the body becomes. In Pekka’s account, spirituality itself becomes bodily. We consider Pekka’s ideas to mean that, to support the religious and spiritual needs of an older person, one must be able to form an emotional connection with them. It is not about wording religious or spiritual perceptions. Spiritual care then, seems to deal with sending the other person a message that you are not alone. This must be done in an understandable way – through the body.
The chaplains had realized that music is a powerful tool to bring back good memories or “good vibrations.” Music provided a special avenue to build an emotional connection with a person who had dementia:
ANNELI: [chuckles] Well that’s how it is, yes, that Elvis has been present in some situations. He’s been there when we’ve celebrated older people’s birthdays, “Spanish Eyes” has been playing, so yes we’ve done this although the context of a church is spirituality, it can’t be all black and white, it is permissible to have other elements that evoke good sentiments and memories in people.
Although all the chaplains had seen how people with severe dementia sang familiar hymns by heart, they understood, just as Anneli did above, that there were residents who enjoyed a different kind of music. They often utilized old Finnish evergreens to offer happy moments. Anneli describes how Elvis resonates with some residents. In their interviews, chaplains expressed awareness that as generations change in nursing homes, the chaplains’ methods should evolve simultaneously.
As the sub-theme of eradicating hardships indicates, the chaplains also to deal with residents’ worries and anxieties. This was not always easy, since they did not necessarily share the same reality, as Tiina expresses:
TIINA: To me it is pastoral care for a person with a memory disorder. I don’t think that, I don’t define the pastoral care of someone with a memory disorder as such, it can for example be that if someone is anxious you are aware of it, and then it can also be more specifically directed pastoral care, but everything that is healing, that takes away from the anxiety of the person with the memory disorder, their restlessness, feeling a certain way, a sense of insecurity, whatever it may be, that is all pastoral care.
Tiina’s words point out that the older person she encounters experiences a wide range of emotions. She also discovers that pastoral care offers a route for support and eases the emotional difficulties that are part of daily life for older people living in nursing homes.
Pastoral care of the older people with dementia is not an easy task and it requires emotional stamina from the carer. Endurance is required often in this daily work, as Malla explains:
MALLA: And somehow that endurance [is required of the chaplain] even when there’s no longer hope of recovery. And there should be resources to face death and also resources to deal with one’s own mortality. One must be able to tolerate incompleteness, uncertainty, and not knowing the answers. And it’s necessary to be present even in difficult situations. And it’s important to bring that hope even when the situation is quite hopeless.
Pastoral care requires abilities to encounter deep questions of life and death. As Malla’s quotation points out, to be able to have this kind of stamina, one must also have resources to deal with personal questions and individual thoughts related to the limitations of life. Even though chaplains did not explicitly share much about what pastoral care demands from the carer, we found sections in the data that led us to interpret that religious and spiritual care require competence and skills. Furthermore, pastoral care for individuals with severe dementia requires the carer to be willing to take part in the other person’s reality of life, which often means remembering past experiences and re-living moments from earlier in life.
4.3 Interpersonal Relations
Chaplains made it clear that pastoral care does not happen in a vacuum, but is relational by its nature. Severe dementia challenges a person’s ability to communicate, which highlights the role of the chaplains. Since no two persons or two ranges of symptoms in dementia are alike, the chaplains have to carefully study each person in every encounter. Elements such as learning the other’s authenticity and inter-relationality form the theme of interpersonal relations.
Chaplains explained that learning from others and learning the authenticity of the other were interlinked. To be able to identify what the older person was experiencing and needing, chaplains had the ability to focus on each individual with time and thought, as Pekka expressed:
PEKKA: One must approach it with an intent to listen and learn about each person individually. You may have methods in mind and approaches, which is good, to have a wide range of various forms of therapy and stuff. But then, as each person is different, with a unique and distinct history, one must always embrace what is left of that person. How that person is able to experience connections. Not so much how one may reach them, but how that person can experience a connection to themselves, others, God.
In Pekka’s words connectedness includes both connection on personal level and connection on a transcendental level. He builds the relation on whatever is available. The shift in perspective is important: the encounter is not about Pekka’s chances to interact with a resident but the resident’s chances to connect with themselves, other people, or God. When the person still had some words and communicative capacities left, chaplains practised active listening:
TIINA: I remember conversations where the person with memory loss who is sitting by me, perhaps holding my hand if it is that kind of a situation, and the person wants to, or may speak for a long time, I’m stuck in between often not having a clue what they mean, although they may utter some real words as well, but … the kind of interaction that is hard to grasp even with validation methods, but it rather becomes a case where one nods their head a bit and indicates that they are in the same emotional state as the speaker, and at the end they might thank me for listening. I have no idea what they have been talking about, but they are very happy.
Although Tiina does not understand what the other person is talking about, she listens actively. She validates the other’s feelings by bodily gestures and postures. The excerpt highlights the human need to be heard. Even when the words have lost shared connotations in this case, the act of discussing is highly relevant for the person with severe dementia. Tiina is sending a message that she is there for the resident.
4.4 Supporting a Personal Relationship with God
Our analysis of the interviews reveals that when it comes to individuals with severe dementia, the traditional conceptual aspects of faith must be set aside. The nature of faith as a deep mystery becomes highlighted within the main theme of supporting a personal relationship with God, including two sub-themes on presence of the transcendent and being free of rationality.
Tiina, like many others, underlines that Christianity is not a religion of reason. It is not about human abilities to understand how God works or about any human features at all. It is all about God’s actions.
TIINA: For a long time, from many other contexts, I have come to the conclusion that in Christianity, which is my religious affiliation that I’m representing here, it can’t be based on that … one must understand, come to terms with it. It would definitely shut many people out from the message and grace … It must be a flimsy religion, if it requires understanding and adhering to a certain school of knowledge.
In Tiina’s thinking, if rational or cognitive aspects of religiosity are placed in the heart of personal faith, religion becomes too narrow and is likely to exclude people. For religiosity to be inclusive and inviting, it should be comprehended more openly, particularly among older people encountering cognitive decline. Pekka shares this thinking, and he provides a detailed description of the nature of cognitive abilities and Holy Communion by saying:
PEKKA: Indeed. Doesn’t that song ask whether the wisest even understands the great mystery. Holy Communion isn’t about understanding, it’s a mystery. It’s, that approach, the way this question is set is so bizarre to me. That’s not what it’s about. It’s more a matter of how to dispense Holy Communion without the person choking. One can raise the sacramental bread to the person’s lips to ask whether they wish to accept it, or perhaps dip it in the wine and dispense them in one go. The most important thing is that the person gets the taste, that familiar taste of the Holy Communion, and the smell, the smell of the wine. Smell is one of the final senses, is it not?
When working with people with severe dementia, even Holy Communion becomes a mainly bodily encounter. In Pekka’s view, Communion is never an issue of reason, but dementia emphasizes that it is an issue of mystery. His words point out that our minds cannot understand how the Communion actually works, but the smell and taste of wine may tell us that we are on the edge of a mystery. Pekka continues and describes how people with even the severest dementia may respond to religious content, resulting in mysterious moments:
PEKKA: There are multiple, in a way emotional [experiences witnessed], that have deeply affected me, moved me, towards my own mystical experience of a presence. I have also personally had some extremely strong spiritual experiences myself. Suddenly, in the stale nothingness of a nursing home such things occur. They’re very strong.
Mystical moments with the residents have made a deep impression on Pekka, and other interviewees talk about similar experiences. Chaplains discovered that building a connection with a person who is usually out of reach is a powerful experience.
When explaining their thoughts on connecting with God and older people, the chaplains talk about the presence of the transcendent that can be experienced as a presence of the holy. Helena pictures her work in nursing homes as expressing God’s love:
HELENA: Yeah. It’s like, I think it’s fundamentally about that sense of caring and love towards the other. That we maintain that deepest meaning and, the possibility to rest in the love, grace, and acceptance of the Lord. And that we trust that although one may not themselves one day comprehend, they still remain … in that circle of God’s love and can rest, without worry.
Helena’s depiction highlights that through, with, and in relationship with the older person, the main goal is to express God’s love and comfort to the individual. Theologically, we interpret this to mean that the holy is present in the moments shared with older people: even when they might not remember God, God remembers them.
5 Discussion
The aim of the article was to analyse how chaplains form a meaningful pastoral care relationship with older people with severe dementia in nursing homes. The intention was to respond to the call to study theological aspects of wellbeing by theologizing practices of pastoral care from the viewpoint of chaplains.
According to the chaplains interviewed for the study, embodied aspects of pastoral care had strong maternal aspects. Most of the interviewed chaplains in our study were women and they shared the understanding that interactions such as humming children’s songs constitute maternal attention and are important in their work. This raises the question as to whether the chaplains treat people with dementia as children or as full adults who just happen to have problems with their memory. Yet, maternal attention includes aspects of love, care, and comfort which are mediated to express God’s presence in the encounter. Furthermore, this discussion on maternal aspects could be seen as a gender issue, indicating that chaplain’s role might be in change because of increase in number of female chaplains. Chaplains’ maternal attention could additionally be seen as the importance of personal relations which support the relationship with God (Park 2013). In future studies should consider whether the maternal aspect includes a patronizing attitude or supports religious autonomy or whether it indicates a gender issue.
Chaplains’ discussions of embodiment furthermore concentrated on the body of the chaplain and one’s behaviour towards the resident with dementia. These examples stress the importance of active listening and showing respect. Additionally, fostering safety in the world of chaos is an important task of chaplain’s embodiment. This strongly resonates with the notion shared by Emery and Pargament (2004) that religiosity as a coping method for older people may provide an anchor of stability when experiencing challenges and changes in life. Feeling safe was interpreted to help people with dementia discover coherence at least momentarily, which could support meaningfulness in life (see Vissers et al. 2023). Chaplains’ ways of inhabiting a relational body included eye contact with the person with dementia, as well as understanding emotions as part of an embodied narrative plot (see Mundle & Smith 2013). Emotions were a way in which the people with dementia could express their will, which chaplains we interviewed aimed to interpret.
It is notable that the chaplains sought to make religious and spiritual aspects available to persons with dementia in ways that were less cognitive but rather affective and embodied. One might not remember in every moment which values are significant for oneself, but by providing religious cues, experiences of connectedness and safety, the chaplain may help the older person with dementia to experience meaningful glimpses of personal conviction, safety, and a sense of being loved by God. This is strongly relational aspect and contributes to the understanding of meaningful relations in dementia care (see also Isene et al. 2022). The relationship between the chaplain and the resident in the nursing home is thus important. Chaplains’ analyses of the holiness of the body stresses the importance of being created by God. By fostering a possibility to be connected with personally meaningful religious connection, chaplains assisted people with severe dementia to hold on their religious values and supported possibility of continuity. Therefore, it we suggest that a possibility to be able to follow personal conviction even with dementia, is likely to support meaningfulness in late life (see Vissers et al. 2023).
Emotional support was one of the main themes and chaplains depicted: both assertion of positive emotions and reduction of bad feelings. The chaplains said that being available for varieties of emotions requires stamina. Religion and spirituality offer a possible meaning structure to reduce hardships and anchor hope (Emery & Pargament 2004). In dementia, the relational aspect becomes highlighted: people need relationships to discover emotional comfort, and in this case the chaplains sought to provide this. Moltmann (1967), for instance, frames that to discover (Christian) hope in hardships of life, the ultimate sources of meaning and hope are rooted into being a part of Christian community and ability to join in the understanding of hope in eternal life. Dementia may restrict both meaning and hope. In a fundamental way, the possibility to find emotional balance and discover religious or spiritual comfort depends on other people.
From the viewpoint of relationships, the chaplains described interpersonal relations as well as supporting older people in their individual relationship with God. These two themes were closely connected: observing the older person, fostering connection, and giving them the opportunity to be heard allowed such a meaningful relationship to be formed that the chaplain was able to support the older person’s relationship with God. In these descriptions we interpreted by providing supported continuity to personal values, chaplains also made it possible for people with dementia to experience coherence in present moment (see Vissers et al. 2023).
The interviewed chaplains were all Lutheran, that is, they come from a faith tradition which stresses the importance of the spoken and written word. Their work among persons with dementia, however, highlights the mystical side of religion. These chaplains see that their task is to deliver God’s love in the nursing homes. An important part of this is Holy Communion as a mystery in which all are welcomed. Pastoral care studies have found that sacred rituals respond to human needs for connection: sacramental rituals provide a way to God, but also an opportunity to connect with a larger community of believers. These studies suggest that rituals provide a powerful way of caring for individuals in general. (e.g. Ramshaw 1987). Our findings highlight that these types of rituals and care are still needed and valued even in people with severe dementia.
We conclude that by fostering meaningful relationships with older people with dementia, chaplains aim to enhance the experience of living a meaningful life in nursing homes. Based on litterature review, Vissers and colleagues (2023) recently pointed out that in old age, there are unique dimensions impacting the experience of meaning: the ability to reconcile the past, discover fulfilled purpose, and feel coherence and continuity become significant elements in late life. With dementia, the elements of meaningfulness seem to take on a slightly different tone, as meaningfulness – at least partly – becomes a quest for caregivers to discover cues of meaning and gently provide gestures, rituals, and an atmosphere where the experience of meaningfulness can be discovered, even with dementia.
6 Conclusion
Chaplains form meaningful relations with older people living with dementia in nursing homes. In this article, we focused on two relations: the chaplain’s own interpersonal relationship with the person with dementia and their support for that person’s relationship with God. We did not discuss additional meaningful relationships that a person with dementia may have, for example with care personnel or relatives. Our qualitative data offers limited insights specific to the selected group of participants who volunteered for the research interviews. While the strength of our qualitative inquiry lies in its capacity for in-depth analysis of the existing data set, it is essential to acknowledge that a more comprehensive understanding of pastoral care in nursing homes necessitates additional studies and a broader range of data types.
This study showed that chaplains working in nursing homes provide assets to support the older people in various aspects of holistic and existential wellbeing. By trying to ensure that the older people were heard, seen, encountered, and nurtured in religious and spiritual aspects, chaplains contributed to supporting their experience of meaningfulness. Earlier studies pointed out links between experience of meaningfulness and wellbeing in life (e.g. Ryff 2012). Yet, most of these studies and theological reflections assume that meaning, religion, and spirituality are based on an individual’s cognitive capacity. More studies are required to comprehend these aspects among people with dementia or other forms of cognitive decline.
Acknowledgements
We thank the Emil Aaltonen Foundation, Academy of Finland, and Kone Foundation for providing funding and support for the project. Special thanks to Kate Sotejeff-Wilson who did the language editing of the article.
References
Alzheimer’s Association. (2024). 10 Early signs and symptoms of Alzheimer’s and dementia. Available online: https://www.alz.org/alzheimers-dementia/10signs (accessed on 7 June 2024).
Bryden, C. (2018). “A continuing sense of self in the lived experience of dementia” in Journal of Religion, Spirituality & Aging, 30(3), 279–290. https://doi.org/10.1080/15528030.2018.1462290.
Emery, E.E. & Pargament, K.I. (2004). “The many faces of religious coping in late life: Conceptualization, measurement, and links to well-being” in Ageing International, 29, 3–27. https://doi.org/10.1007/s12126-004-1007-2.
Ellis, J. (2013). “Thinking beyond rupture: Continuity and relationality in everyday illness and dying experience” in Mortality, 18(3), 251–269. https://doi.org/10.1080/13576275.2013.819490.
Erikson, E.H. (1994). Identity and the life cycle. New York: W.W. Norton & Company.
Evangelical Lutheran Church of Finland. (2020). Personnel Statistics. Available online: https://www.kirkontilastot.fi/viz?id=136 (accessed on 20 October 2022).
Finnish Institute for Health and Welfare. (2024). Statistical Yearbook on Social Welfare and Health Care 2023. Available online: https://www.julkari.fi/bitstream/handle/10024/147999/URNISBN978-952-408-230-3.pdf?sequence=1&isAllowed=y (accessed 7 June 2024).
Ganzevoort, R.R. (1998). “Religious coping reconsidered, Part one: An integrated approach” in Journal of Psychology and Theology, 26(3), 260–275. https://doi.org/10.1177/009164719802600304.
Ganzevoort, R.R. (2010). “Minding the wisdom of ages” in Practical Theology, 3, 331–340. https://doi.org/10.1558/prth.v3i3.331.
Ganzevoort, R.R. & Bouwer, J. (2007). “Life story methods and care for the elderly: An empirical research project in practical theology” in Ziebertz, H.-G. & Schweitzer, F. (Eds.), Dreaming the Land: Theologies of Resistance and Hope. Münster: LIT, 140–151.
Isene, T.-A., Thygesen, H.; Danbolt, L. & H. Stiffoss-Hanssen, H. (2022). “Embodied meaning-making in the experiences and behaviours of persons with dementia” in Dementia, 21(2), 442–456. https://doi.org/10.1177/14713012211042979.
Kalu, F.A. & Bwalya, J.C. (2017). “What makes qualitative research good research? An exploratory analysis of critical elements” in International Journal of Social Science Research, 5(2), 43–56. https://doi.org/10.5296/ijssr.v5i2.10711.
Kitzmüller, G., Clancy, A., Vaismoradi, M., Wegener, C., & Bondas, T. (2017). ““Trapped in an an empty waiting room” – The existential human core of loneliness in old age: A meta-synthesis” in Qualitative Health Research, 28(2), 213–230. https://doi.org/10.1177/104973231773507.
Larsson, H., Saarelainen, S.-M., Sjöberg, M., Dezutter, J., & Haugan, G. (2024). “Existential loneliness and meaning-in-life in the lived experience of nursing home residents” in International Journal of Care and Caring, 1–19. https://doi.org/10.1332/23978821Y2024D000000047.
Moltmann, J. (1967). Theology of Hope: On the Ground and the Implications of a Christian Eschatology (J.W. Leitch, Trans.). London: SCM Press.
Mundle, R. G. & B. Smith (2013). “Hospital chaplains and embodied listening: Engaging with stories and the body in healthcare environments” in Illness, Crisis & Loss, 21(2), 95–108. https://doi.org/10.2190/IL.21.2.b.
Nygaard, M.R., Austad, A., Sørensen, T., Synnes, O., & McSherry, W. (2022). “‘Existential’ in Scandinavian healthcare journals: An analysis of the concept and implications for future research” in Religions, 13(10), 979. https://doi.org/10.3390/rel13100979.
O’Rourke, H.M., Duggleby, W., Fraser, K.D., & Jerke, L. (2015). “Factors that affect quality of life from the perspective of people with dementia: A metasynthesis” in Journal of the American Geriatrics Society, 63(1), 24–38. https://doi.org/10.1111/jgs.13178.
Oviedo, L. (2023). “Theology’s concern for wellbeing and human flourishing: A research program” in Journal of Empirical Theology, 36(1), 84–98. https://doi.org/10.1163/15709256-20231135.
Park, C. (2013). “Religion and meaning” in R. Paloutzian & C. Park (Eds.), Handbook of the Psychology and Religion. 2nd ed. New York: The Guildford Press, 357–379.
Parra, M.A., Butler, S., McGeown, W.J., Brown Nicholls, L.A., & Robertson, D.J. (2019). “Globalising strategies to meet global challenges: The case of ageing and dementia” in Journal of Global Health, 9(2), 020310. https://doi.org/10.7189/jogh.09.020310.
Pirhonen, J., Vähäkangas, A., & Saarelainen, S,-M. (2023). “Religious bodies: Lutheran chaplains interpreting and asserting religiousness of people with severe dmentia in Finnish nursing homes” in Journal of Ageing and Longevity 3(1), 92–106. https://doi.org/10.3390/jal3010008.
Ramshaw, E. (1987). Ritual and Pastoral Care. Minneapolis, MN: Fortress Press.
Renz, S.M., Carrington, J.M., & Badger, T.A. (2018). “Two strategies for qualitative content Analysis: An intramethod approach to triangulation” in Qualitative Health Research, 28, 824–831. https://doi.org/10.1177/1049732317753586.
Ryff, C. D. (2012). “Existential well-being and health” in Wong, P.T.P. (Ed.), The Human Quest for Meaning: Theories, Research, and Applications (pp. 233–247). Routledge/Taylor & Francis Group.
Tornstam, L. (2005). Åldrandets Socialpsykologi. Stockholm: Norstedts akademiska förlag.
Saarelainen, S.-M., Reimi, J., Ojalammi, J., Larsson, H., Haugan, G. & Dezutter, J. (2024). “Nursing homes as a context of pastoral care: Chaplains encountering older adults who experience existential loneliness and meaninglessness” in Diaconia, 14(1). https://doi.org/10.13109/diac.2023.14.1.61.
Saarelainen, S.-M., Vähäkangas, A., & Anttonen, M.-S. (2020). “Religious experiences of older people receiving palliative care at home” in Religions, 11, 336. https://doi.org/10.3390/rel11070336.
Schnell, T. (2009). “Sources of meaning and meaning in life questionnaire (SoMe): Relations to demographics and well-being” in The Journal of Positive Psychology, 4(6), 483–499. https://doi.org/10.1080/17439760903271074.
Slettebø Å., Saeteren B. Caspari S., Lohne V., Rehnsfeldt A.W., Heggestad A.K.T., Lillestø B., Høy B., Råholm M.B., Lindwall L., Aasgaard T., & Nåden D. (2017). “The significance of meaningful and enjoyable activities for nursing home resident’s experiences of dignity” in Scandinavian Journal of Caring Sciences, 31(4), 718–726. https://doi.org/10.1111/scs.12386.
Sundström, M., Edberg, A. K., Rämgård, M., & Blomqvist, K. (2018). “Encountering existential loneliness among older people: perspectives of health care professionals” in International Journal of Qualitative Studies on Health and Well-being, 13(1), 1474673. https://doi.org/10.1080/17482631.2018.1474673.
Swinton, J. (2012). Dementia: Living in the memories of God. Cambridge: Wm. B. Eerdmans Publishing Co.
Swinton, J. (2014). “What the body remembers: Theological reflections on dementia” in Journal of Religion, Spirituality & Aging, 26(2–3), 160–172. https://doi.org/10.1080/15528030.2013.855966.
Vissers, J., Peltomäki, I., Duppen, D., Haugan, G., Larsson, H., Saarelainen, S.-M. & Dezutter, J. (2024). “Meaning in late life: A scoping review” in Journal of Happiness Studies 25 (21) https://doi.org/10.1007/s10902-024-00726-x.
Vähäkangas, A. & Saarelainen, S.-M. (2019). “Relationality as the basis of hope: Embodied experiences during chronic illness,” in A. Vähäkangas, S. Angel and K. Helboe Johansen (Eds.) Reforming Practical Theology: The Politics of Body and Space. IAPT. Conference Series no. 1, 76–82. https://doi.org/10.25785/iapt.cs.v1i0.56.
Vähäkangas, A., Saarelainen, S.-M., & Ojalammi, J. (2021). “The search for meaning in life through continuing and/or transforming the bond to a deceased spouse in late life” in Pastoral Psychology, 71, 43–59. https://doi.org/10.1007/s11089-021-00979-w.
World Health Organization, WHO. (2019). Risk reduction of cognitive decline and dementia: WHO guidelines. Available online: https://www.who.int/publications/i/item/9789241550543 (accessed 7 June 2024).
