Christian worship leaders’ attitudes and observations of people with dementia

Introduction

Within the last decade, in accordance with the person-centred approach, commentators have paid increasing attention to the role played by spirituality and religion in meeting the needs of People with Dementia (PWD), and thereby enhancing the lives of PWD and those of their carers (Swinton, 2007; Dakin, 2009; MacKinlay, 2011). It is argued that participation in religious rituals and services by the person with dementia provides an opportunity to address his/her needs. For example, in relation to their pastoral care, where such care is perceived as being ‘… meaningful as a way of manipulating symbols through ritual in order to create a greater sense of security and connectedness despite fragmentation and loss’ (Post, 2006, p. 228). This includes ‘affirmation of God’s presence’, an experience that offers great comfort and meaning for a person of faith (Dakin, 2009, p. 27). These views are based on expert consensus and theoretical perspectives, rather than empirical data.

A Mental Health Foundation research report, which used evidence that drew directly on PWD’s own views and experiences, identified a person’s ability to practise faith or religion as one of 10 key quality of life indicators (Alzheimer’s Society, 2010). From a policy perspective, national guidelines highlight the central role of respect for religious beliefs and spiritual and cultural identity in providing Person-Centred Care (PCC, NICE/SCIE, 2006). A stated principle of care is that it is incumbent on professional carers to identify the religious beliefs and spiritual needs of PWD, to accommodate preferences and to support their faith, spirituality and tradition. Similar guidance has been directed towards the psychiatric profession (Department of Health, 2007). Again, these principles are based on expert consensus and theoretical perspectives, rather than empirical data.

A possible consequence of the lack of empirical data is that a gap exists between policy and practice. For example, Grey (1994) concluded that, among other factors, care staff’s poor awareness of spiritual matters, uncertainty about their personal beliefs, and fear of incompetence, means that care staff often experience difficulties in supporting PWD’s faith needs, and guidance is not implemented (Goldsmith, 2004). Similarly, studies of the psychiatric profession indicate that psychiatrists often fail to accommodate the religious beliefs of patients as a result of their own prejudices and lack of awareness about religious faith (Koenig, 2008). These examples suggest that care staffs’ and psychiatric professionals’ attributions may lead to the development, or maintenance, of malignant social psychology of care (Kitwood, 1997). Within this context, the present authors believe the study of worship leaders’ attitudes and observations of PWD will enhance our understanding of the above processes and therefore is worthy of empirical investigation.

In the present context the term ‘worship leader’ is used to describe those individuals who are the principal coordinators of a worship carried out according to a certain prescribed form within a denomination (e.g. a cleric, celebrant, celebrant, elder, minister, vicar, pastor, priest, etc.).

Phase One – The focus group consisted of four participants, three male and one female with a range of 2–33 years experience of working with PWD. Three participants were ordained ministers, one was an Honorary Chaplain. All were currently employed as NHS Chaplains, all defined their ethnicity as White British and were drawn from four denominations of the Christian faith: Roman Catholic, Church of England, Methodist, and Baptist.

Phase Two – Following the focus group, eight newly identified participants were interviewed. Demographic details are provided in Table 1. Interview participants all defined their ethnicity as White British, working with PWD within a range of contexts: church congregations, home worship, care homes and hospital inpatient units.

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Table 1.

Interview participants’ demographic information for Phase 2.

Participant	Gender	Denomination	Years of experience with PWD	NHS Chaplaincy	Parish: church and care homes
1	Female	Methodist	19	No	Yes
2	Male	Church of England	28	Yes	No
3	Male	United Reformed Church	25	Yes	Yes
4	Female	Church of England	15	Yes	No
5	Female	Church of England	10	No	Yes
6	Male	Methodist	26	Yes	No
7	Male	Roman Catholic	6	No	Yes
8	Male	Roman Catholic	22	No	Yes

Design: An hour-long focus group was held with four participants. Themes arising from the focus group were used to develop the initial semi-structured interviews. Eight individual one-to-one interviews were held with participants lasting approximately 1 h each. The contents of each interview were guided by the emerging themes from the earlier stages of data analysis and thus the interview schedule evolved as more interviews and analyses occurred. All individual interviews were audio taped, transcribed and a thematic analysis was undertaken using Computer Assisted Qualitative Data Analysis Software (CAQDAS) NVivo8 (QSR International, 2009).

Ethics

Ethical approval was granted by Northumberland Tyne and Wear NHS Foundation Trust Research and Clinical Effectiveness Department and by County Durham and Tees Valley 2 Research Ethics Committee.

Results

The focus group provided topic headings to discuss in the initial interview, such as memory triggers (e.g. hymns, prayers); visual aids and objects (e.g. cross, candles); relationship with family and community; denomination; clergy; practical dilemmas (e.g. suitable environment); sensory stimulation. In Phase 2, five themes emerged: Familiarity and Structure, Enhanced Sensory Cues, Worship Leader’s Approach, Social Support, Personality and Characteristics of the person with dementia. The following section presents the five themes and their sub-categories, with illustrative quotes from participants.

Theme 1: Familiarity and Structure

This category constitutes the factors that were most salient for participants. Traditional ‘age appropriate’ hymns and prayers were observed by all participants to be a primary means of facilitating engagement.

(Participant 3): ‘If we gave them the familiar hymns they were very much part of worship experience. They were able to join in with what they were familiar with when they were younger’.

The Lord’s Prayer was reported as most accessible for PWD.

(Participant 6): ‘There was one lady I visited, all she could say was the word ‘visitor’ … except The Lord’s prayer. She could say The Lord’s Prayer with me, and as soon as we finished she was unable to say any other word’.

All participants perceived that set pieces of wording acted as trigger phrases for engagement.

(Participant 6): ‘Even just saying “let us pray” is a trigger phrase for them to adopt a certain posture … their eyes closed, hands go together, even among people who appear not to be engaged at all’.

Four participants observed that familiar hymns and prayers elicited engagement of PWD who were traditionally non-churchgoers. Familiarity was perceived by all participants to create security. Hymns were observed to be an important means of creating a structure for experience within worship and sustaining people’s engagement. Participants considered the consistency (eight participants) and simplicity (six participants) of the hymns to be important:

(Participant 4): ‘I always try to have that little framework, something to open, something to listen to, something to join in, something to explore, and something to finish with. You need a structure and just explore what works, what doesn’t work’.

Many participants felt that giving a set structure to a Service provided a familiar pattern which a person could identify with, particularly for individuals in an advanced stage of dementia. However, the ability to provide flexibility in the form of one-to-one worship was necessary at times for those who were either very frail or extremely agitated. Engagement was perceived by all participants as creating a sense of normality, a sense of belonging for the person with dementia, and an opportunity for self-expression and self-efficacy.

(Participant 7): ‘They fit in, they know when to kneel and stand, they’ll sing and they’ll answer’.

All participants observed changes in emotional state during services, and five described PWD as ‘more relaxed, at ease and peaceful’ within the context of a service.

Theme 2: Enhanced Sensory Cues

For all participants, sensory stimulation was critical to providing an experience that people would find meaningful on a spiritual level. For all participants music and visual cues such as colour and symbols, the Bible, the cross and clerical collar, facilitated orientation to place and time:

(Participant 2): ‘Music is so important… it clicks in people “Oh, yes, I’m in church now, this is where I am”.

(Participant 1): ‘I would usually wear my cassock … the symbolism would be important, it sets the scene’.

(Participant 7): ‘Colour will be evocative of the season’.

They were perceived to act as memory triggers (all participants) with layers of meaning for the PWD and to elicit changes in emotional state.

(Participant 8): ‘Whether it’s linking into memory of when they were at school or church, or saying the rosary back home … but it can be a source of making them more peaceful. The receiving of Communion … the physicality of that … getting something to eat and the memory of that from childhood).

All participants perceived the importance of touch in providing comfort and attachment. Touch included physical contact, the holding of objects (hymn cards, holding cross) and anointing with oil or holy water. Tears (often perceived as joy, relief) were frequently observed.

Theme 3: The Significance of the Worship Leader’s Approach

This theme was the most developed in terms of its properties and dimensions. It comprises several key sub-categories: relationship, monitoring, wellbeing, insecurity and ethical, practical and theological dilemmas. All participants identified the relationship between the worship leader and PWD, and knowledge of the people as being central to eliciting engagement. Within this, careful use of non-verbal communication (eye contact, eye-level, touch) (eight participants) and a contemplative stance (being attuned to the person, an unspoken connection between people) (three participants) were considered essential.

(Participant 1): ‘You have to make a relationship with people. You have to project your personality’.

All participants perceived themselves as having a ‘special relationship’ with parishioners, that operated on both a symbolic and an emotional level and provided for PWD a sense of connection with God and a sense of security, of being in safe hands.

(Participant 2): ‘People see the collar and you do represent something almost that feeling “we’re in safe hands”’.

Four participants described monitoring well-being, recalling incidents of distress for PWD, and of responding in a low key manner. Participants regarded distress as a positive effect, providing an opportunity for the processing of difficult emotions, provided the emotions were contained and validated. Most participants were reluctant to draw conclusions about the causes of the PWD’s distress or failure to engage in the worship, without fully understanding the wider context of the PWD.

Worship leaders’ insecurity was reported by three participants to impact negatively on their willingness and ability to conduct services with PWD. The insecurity seemed to be about not feeling able to cope with the unpredictability of the situation:

(Participant 2): ‘There was a degree of nervousness amongst those clergy at going into a unit for PWD …there was a fear, what will people do, will they be able to join in with things and respond to it?. It’s not unusual for my feeling at the beginning of the service … I wonder how we’re going to do here today … that’s quite frequent, the fear at the start’.

All participants perceived that worship leaders’ personality and flexibility were key factors in successful ministry to PWD:

(Participant 6): ‘I talk about busking in that you don’t know until you get there which approach is going to be needed, because it depends on the congregation, but the busker isn’t making it up as they go along, they’re using pre-practised chords and songs they’ve used in other situations’.

Seven participants described undergoing standard training for ministry, but no training in working with PWD. However, some felt that aspects of their training for ministry and reflective practice provided guidance.

(Participant 6): ‘All training for the last thirty years has included psychological elements to it …Training for person centred care,… that’s very high on the agenda’.

Participants reported that ministering to PWD was an experience of personal growth. All participants reported conflicts and dilemmas that impacted on their ability to provide PCC. Six participants reported concerns about failure of care staff to gain the consent of the person with dementia to participate in acts of worship, two reported concerns about failure of care staff to accommodate religious needs, and all experienced these as ethical dilemmas. Often these arose due to the practicalities of the care environment:

(Participant 6): ‘I’ve always felt uncomfortable with taking services in a communal lounge where everyone is, because people don’t have the opportunity to opt out’.

Three participants expressed great concern that staff attitudes often (unintentionally) led to bad practice.

(Participant 5): ‘They felt that they had to get me a good congregation, so they would say “Come on, are you coming to the service?” as if it was like the pictures … it was as if they were all being herded in to this thing happening … that created confusion for them’.

Three participants reported examples of good practice including care home residents being taken to the local church service, or ministers being provided with an appropriate room and invited to give Communion to identified residents. Three participants reported dealing with these dilemmas directly:

(Participant 6): ‘I’ve always said to a home if I’m offering worship, “Can we have a separate room for this?”’.

adaptations to practice (specially devised hymn cards), or on-the-spot problem-solving (allowing a PWD to make an offering). Communion was perceived by all participants as the most significant ritual for churchgoers, and was the most frequently cited example of adapting practice to the needs of PWD:

(Participant 1): ‘If you use wafers, they give it back to you. They receive by intinction, which is dipping the bread, and then by the time it reaches their mouth it’s nearly dissolved, so they don’t give it back’.

Theme 4: Social Support from and for Family, Community and Professional Carers

This category pertains to the role of social support from worship leaders, relatives and carers for PWD, and support of relatives and carers by worship leaders. Social support for PWD included the shared experience of worship within community congregations, with care staff, residents, relatives in homes and hospital wards, and one-to-one with clergy.

(Participant 1): ‘It felt like a service … about half a dozen visitors from the local churches came to support as well as staff’.

All participants perceived the act of worship as providing social support for the person and their relatives. Seven participants described it as a source of strength and comfort to the person with dementia and carers and reported changes in their emotional state.

(Participant 2): ‘If the person’s partner comes along it can be a very important time … it may be that it’s something they’ve lost the ability to share as a couple … to be able to participate in worship together … is moving for the partner and the person themselves’.

The shared experience was perceived by all participants to have layers of meaning and to create a sense of belonging for the person.

(Participant 1): ‘It could be that it reminded them of times they went to church and took Communion with their family and friends, and that community.

Six participants described how church members, staff and volunteers provided practical support within services and offered containment when PWD became distressed, often this involved moving closer to the person and offering soothing touch. Supporting the identity of the PWD (five participants) and remembering on their behalf (three participants) was reported as an important aspect of social support.

(Participant 5): ‘Relatives find comfort knowing that their Mum, Dad, whichever, is receiving this’.

(Participant 1): ‘What do you do when you can’t remember? How are you still part of a community of faith? So obviously we have to remember for them’.

Theme 5: The Personality and Characteristics of the Person with dementia

This category was the least developed of the five themes, but was considered important by participants. It comprises two sub-categories: the personal history of the person, and his/her stage of dementia. Both impacted on worship leaders’ ability, and choices about how, to elicit engagement, enjoyment and a sense of connection.

(Participant 1): ‘All the time she was saying “God help me” and the staff thought it was just a loop she’d got into, but somebody did some digging about her past life. She used to be a churchgoer until she got married, her husband wasn’t a churchgoer so she didn’t go anymore, and as soon as we started bringing her to the service … she stopped saying it’.

Discussion

The findings suggest that religious services provide a socially supportive environment in which the various components of the service contribute to a ‘stress buffer effect’ for PWD by meeting fundamental psychological needs (Coyne & Delongis, 1986). For example, participants perceived that the familiarity and structure that worship services offer (through the use of traditional rituals and symbols) engendered feelings of security, normality, a sense of belonging and self-efficacy in the PWD attending. The use of sensory cues as part of worship was perceived to facilitate comfort, attachment and a sense of connection (to other worshippers, and to God).

The presence of, and interaction with, worship leaders, carers and relatives was perceived to offer the person with dementia a shared experience incorporating containment, validation of emotions, security, inclusion and validation of the identity of the person (both as an individual for whom relationship, attachment and belonging is important, and as a person of faith, for whom religious expression and ritual were perceived as central).

The effects of these forms of support were reported to be observable and evidenced in the improved functioning of PWD within the environment of the worship service. For example, in PWDs’ direct responses to sensory cues and prompts (e.g. praying, singing); in their active engagement with aspects of the service and with the worship leader, carers and each other (making eye contact, smiling, holding hands); and in changes in their emotional state (e.g. enjoyment).

Stimulation of memory, both verbal and non-verbal, was seen as a key process through which many of the positive effects were obtained. The participants noted that familiarity and sensory stimulation triggered specific memories of events from the past (i.e. episodic memories, Tulving, 2000) and that retrieval was aided by the structures within the service. In this context, negative affect was not perceived by worship leaders as a negative outcome of the service for PWD, but potentially as a positive outcome, in terms of emotional release and emotional processing leading to resolution of internal conflicts.

In relation to non-verbal forms of memory (e.g. memories for actions, procedural memories, Baddeley, 2002), the use of familiar hymns and prayers and traditional visual symbols were perceived to act as automatic triggers to long-term, well-established memories (i.e. an automatic awareness of when to stand, sit, kneel, make a response, recite a prayer, etc). It was commonly perceived that many of the long-term memories elicited had been learned in childhood and/or at school, and therefore had resonance for non-churchgoers too.

Conclusions

Participation in religious worship by PWD appears to constitute a naturalistic psychosocial intervention comprised the service itself and the social context that brings together a range of supports and cues in a meaningful way for the person with dementia. If these efforts are to be effective and productive in terms of developing understanding and implementing appropriate interventions, this process demands collaborative engagement with those people who make-up the PWD’s social support network. In summary, the results of the present study will be helpful in informing the work of worship leaders, potentially contributing to the development of further guidelines and flexible ways of working. The findings may also contribute to care assessment and planning for PWD, and also direct future research in the area.