Introduction

Language is a symbolic currency for spirituality, being inclusive or exclusive, a door which may be open or closed. Definitions of spirituality within healthcare foreground ‘meaning and purpose’, (Puchalski et al. Citation2009, 887). Words offer specific reference to those aspects of life beyond the present moment (MacKenzie and Mumby Citation2022). They encapsulate mystery and the unknown, in addition to issues of connection, identity, story, rationalisation and reflection. Does language impairment then close, even lock, such a spiritual door? Can story-telling via supported communication pre-empt the turn of the key?

Dementia signals a range of possible underlying diseases, a spectrum of respective impairments in function including both cognitive decline and language impairment (Collicutt Citation2017, ch.1) The latter is strongly exemplified in primary progressive aphasia (PPA) or frontotemporal dementia, including logopenic aphasia. (Aphasia is the generic term for language impairment following brain damage). Despite concern for spiritual health in dementia (Kevern Citation2015; Swinton Citation2017) little is known about the personal experience of spirituality in such language-led dementia, which results in a gradual dissolution of language with profound psychosocial impact from linguistic and cognitive degeneration (Volkmer et al. Citation2023). Given that language impairment also features in other types of dementia (May, Dada, and Murray Citation2019), establishing methods to assess lived experience of spiritual health and provide support should be a priority.

Ethical considerations and rationale for using the WELLHEAD Toolkit

The WELLHEAD Toolkit was co-produced with people with aphasia for multi-professional use in safeguarded settings (Mumby and Grace Citation2019) (such as by healthcare professionals, including chaplaincy teams, and trained personnel in third sector organisations), reflecting the assertion that ‘Spirituality is everybody’s business’ (Jones et al. Citation2022). The WELLHEAD Toolkit structures a one-to-one interview using principles of non-judgmental listening to explore a participant’s meaning and purpose in life (spirituality). It is based on religiously neutral dimensions of WIDE, LONG, HIGH and DEEP, as defined in Figure 1.

Figure 1. WELLHEAD framework and scope of dimensions. (Image reproduced from the WELLHEAD Toolkit [Mumby Citation2022] with permission).

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The Toolkit comprises graded Picture Resources, Word Resources (Word Boards and Starter Questions) and a detailed Manual enabling use by facilitators without an SLT background, distilling self-scores, verbal summaries of experience, and goals from participants. Participants are offered choices of Words, Pictures and Questions as scaffolding to gain their perspective and priorities.

A feasibility study of the Toolkit, with ethical approval within the UK health service, is documented in Mumby and Roddam (Citation2021). That case series recruited ten people with aphasia (of varying aetiology, type and severity, and religious background), post discharge from a UK Outpatient SLT service via aphasia-friendly informed consent procedures. Ethical approval included anonymisation of participants using colour names (hence ‘Mr Grey’ in this article). Overall, using integrated mixed methods (Moran-Ellis et al. Citation2006), the study confirmed the acceptability (irrespective of religious standpoint), accessibility, and positive impact of the WELLHEAD Toolkit for people with aphasia, including additional mild cognitive changes and visual problems (hemianopia or macular degeneration) (Mumby and Roddam Citation2021). The entire case series was subject to a systematic interpretive thematic analysis (Attride-Stirling Citation2001). This article focuses on one individual, integrating both quantitative and qualitative findings in narrative form.

In brief, the case series was subject to three phases of analysis focusing on the lived experience of spirituality. Phase 1 focused on participant feedback from Toolkit experiences, combining quantitative measures from questionnaires with in-depth interpretative analysis, deriving themes substantiated within NVivo11 software. Phase 2 focused on detailed exploration of impact, incorporating WELLHEAD Toolkit Score Form summaries, and feedback concerning onward chaplaincy referral. Both Phases, 1 and 2, incorporated participant verification and thematic cross-checking by an independent researcher (Roddam), enhancing rigour. There was good correlation (Pearson’s 0.75) between measures of dissonance from SHALOM and WELLHEAD for the case series (the difference between ideal and lived experience in SHALOM, compared with the difference in the WELLHEAD score from 10, the ideal score) (Mumby Citation2022). Thus Phases 1 and 2 provided a platform for the final Phase 3: a detailed interpretive synthesis of individual experiences, such as illustrated in the current narrative.

Materials and methods

Detailed methods have been reported in Mumby and Roddam (Citation2021), using established methodology from aphasia research (Mumby and Whitworth Citation2013). Mr Grey’s narrative was selected for presentation here due to the absence of narratives from PPA in the spirituality literature. In-depth narratives are important for resolving ambiguities prevalent in the context of aphasic communication (MacKenzie Citation2017), including misunderstandings arising from quantitative measures alone. Detailed exploration of the mechanisms for creating meaningful interactions in PPA has been deemed an important priority for research (May, Dada, and Murray Citation2019, 872).

The narrative incorporates KM’s reflections about Mr Grey’s interview with the WELLHEAD Toolkit, his authentication and feedback (reducing researcher bias), and the subsequent reported impact in the context of detailed background information. The account respects the order in which it emerged, thereby assigning importance to the voice of the participant rather than others’ perceptions (see Swinton, Mowat and Baines Citation2011).

Mr Grey’s difficulties with finding words, memory, concentration, and mood were attributed initially to lack of sleep, or depression four years previously. His impairments forced him to retire from work as a security guard six months before his planned age of 65, and to stop driving. He was married with a supportive wife. They had recently moved house to join one of their daughters and their grandchildren. Whilst awaiting memory clinic assessment, six months before recruitment he had been referred for SLT assessment and advice, prior to confirming his diagnosis of logopenic aphasia. The Addenbrookes Cognitive Examination (ACE III) scored 56/100, identifying problems with attention orientation memory and fluency. Physical impairments were less noticeable. He wore glasses, but no hearing aids. He showed general lack of empathy and motivation. In conversation, he had difficulty maintaining or switching topics. Additional details are available elsewhere concerning his ‘moderate’ aphasia (using measures at discharge two months prior to interview) and contemporaneous SHALOM scores (Mumby and Roddam Citation2021; Mumby Citation2022).

Mr Grey consented to attend for interview at a non-clinical building at the hospital where he had previously received Outpatient SLT, with a research nurse and a chaplain on call in the event of any distress, and his wife providing transport.

Prior to using the WELLHEAD Toolkit, KM used extensive extra repetition and reassurance for answering the SHALOM questionnaire (Fisher Citation2010). This standardised comparator measure was selected for suitability by a steering group of people with aphasia and diverse backgrounds who steered the research throughout (Mumby and Grace Citation2019; Mumby Citation2022). Breaks were given between tasks, with a final feedback interview based on a short, written questionnaire. The WELLHEAD Toolkit (previously outlined) offered scaffolding for the interview spread over 60 minutes, including a 10-minute refreshment break halfway through (after LONG), conducted using principles of Total Communication (Byng, Swinburn, and Pound Citation1999).

At regular intervals during the interaction, interpretations were checked with Mr Grey (using slow pace with pauses, recapping content using simple sentences and phrases, and written key words). Limiting choices to two or three items at a time, and the option to discard unwanted items improved his focus. He also verified a Score Form summary of the WELLHEAD findings (see Table 1) containing summary phrases from the discussion, self-scores and goal-setting. The dimensions were explored in succession: WIDE, LONG, HIGH and DEEP. As each was completed, Mr Grey allocated a score using a visual analogue scale (1–10) where 10 signified where he wanted to be, and 1 was the furthest from this. Finally, based on the discussion, Next Steps were agreed (goal-setting). Safeguarding included offering unconditional follow-up with the hospital chaplain which Mr Grey accepted during the interview.

The WELLHEAD interview and feedback interview were videoed with informed consent. Along with other data from the case series, transcripts underwent systematic thematic analysis within NVivo software with quantitative analysis of numerical findings (Mumby and Roddam Citation2021), providing additional context. Salient themes from Mr Grey’s case are shown within the results, but they have been integrated into a narrative respecting Mr Grey’s voice as he welcomed support to enable synthesis of his fragmented story.

Results

Mr Grey’s SHALOM scores (Mumby and Roddam Citation2021) required significant support due to the cognitive-linguistic challenge of the task. Compared with others in the case series, this illustrates the limited suitability of this form of assessment for someone with aphasia as part of dementia. Cautious conclusions nonetheless confirmed that he found both religion and spirituality to be ‘very important’. The largest mismatch between ideal scores and lived experience occurred in the Transcendental domain, reinforcing that his experience of transcendency did not live up to his ideals, suggesting he was longing for something more (see ‘HIGH’ below).

Interviews were conducted within the constraints of Mr Grey’s moderate aphasia, including halting speech during conversation, and severe anomia (impairment in naming or using content words). He struggled to maintain the topic of conversation so needed regular assistance to refocus using a combination of simple recapping, and by referring to the Word and Picture Resources. He denied feeling tired, but several breaks were taken due to signs of fatigue during the interview (e.g. deteriorating concentration). The feedback interview showed he had found the experience helpful. He could access all aspects of the Toolkit and successfully regained his composure after sharing emotionally sensitive information. Table 1 shows his Score Form summary.

Within the detailed and supported WELLHEAD interview, Mr Grey shared that his negative experiences of religion were adversely affecting development of his own spiritual life: particularly memories of how family tragedies were handled by his father, who was a Catholic. The mismatch between his ideals and his lived experience were made more explicit there: indicating greatest tension (lowest score) in the LONG dimension where he was trying to come to terms with his life story. As the interview progressed, the pain of unresolved grief was gradually disclosed. Mr Grey used the Pictures to anchor his dialogue. He responded positively to written forms of Starter Questions as they were considered, and key words on the Word Boards (including additional Boards regarding Religion, Belief and Faith). These resources were used to help him keep focus and clarify the message when communication breakdown occurred through anomia or grammatical difficulties. Open questions were less productive than offering choices.

Each dimension is described in turn below, followed by a section on ‘Next Steps’. Table 2 illustrates key themes as evidenced within the dimensions.

Discussion

Mr Grey’s narrative provides a detailed perspective on living with a rare form of dementia (logopenic aphasia) which has previously been unreported. It also offers principles for wider consideration, addressing challenges for assessment and intervention in the context of degenerating language within dementia. Language is the unique tool that allows reference to things that are no longer present, being redolent with specific transferable meaning even more than images or music. It provides a place-marker for things that have yet to be experienced, or that are beyond experience or control. Language is the vehicle that brings spirituality from our unconscious being into our consciousness (MacKenzie and Mumby Citation2022).

In the context of deteriorating or unreliable memory, simple forms of language (both spoken and written) may offer a lifeline, combined with other symbols such as pictures, to offer cross-referencing in co-constructing a narrative. Mr Grey chose the focus in the exploration. Rather than dwelling on senses and the embodiment of spirituality (as did some participants in the case series), he stressed the value of story-telling and language within relationship, and appeared to value the use of words in authenticating his experience. The narrative illustrated the importance of language-mediated resolution before that door closes, words become inaccessible, disrupted, or disintegrate. Volkmer et al. (Citation2018) describe a randomised controlled trial about conversation partner training in PPA, aiming to determine the viability of communication access. Such work may inform future communication partner training which could help address spiritual needs.

KM had already met Mr Grey clinically before he joined the study, so would the interview have been as fruitful otherwise? Other examples from the same case series confirmed functionality, giving rich narratives, even without prior contact establishing a relationship of trust. Conversely, the possible advantage of prior contact is an argument for devolving such spiritual care to professionals with detailed knowledge of the participant concerned. Bearing in mind the need to safeguard people with dementia, such professionals must have the necessary spiritual care competencies (Giske et al. Citation2022) and be able to make onward referral for specialist support (such as chaplaincies).

The relationship of KM to Mr Grey was a privileged one, balanced by prioritising his perspective rather than imposing her views, and using kindness and compassion in the facilitator role. Accordingly, extensive verification that his view had been understood, during (and after) the interview, helped to resolve any ambiguity and to ensure the authenticity of the narrative as well as his wellbeing (see methods). The process confirmed the importance to Mr Grey of ‘being heard’ accurately, of shared stories about human connection and sense of self, and his profound desire to both know and be known. This was captured in DEEP in Mr Grey’s delight to ‘tell me about your story-tale’. The positive feedback rewarded KM who was unavoidably invested in the story as participant-observer. The research steering group of people with aphasia helped to mitigate any undue researcher bias.

Mr Grey’s narrative revealed potential for using the WELLHEAD Toolkit with those who have progressive disease whilst they still have sufficient verbal and cognitive skills to address their meaning and purpose. Internalised emotionally charged experiences may compromise health further into the progression of dementia when reliable communication fades and expressions of emotion or distress are beyond full interpretation by others. Formulating Next Steps encouraged in Mr Grey a shift from despondency and powerlessness towards ownership and empowerment, including facing and letting go of some unhelpful patterns. Evidence for the beneficial effects of goal-setting for cognitive rehabilitation in early dementia has already been reported (Clare et al. Citation2019), adding weight to such an approach.

The narrative included measurements of spiritual health, important for capturing change but largely lacking in the context of dementia where mental health measures are better developed. The study design did not incorporate reassessment, which would be useful in future work using the Toolkit. In the absence of memories of ‘last time’, reapplying the chosen words and concomitant pictures may provide extra scaffolding for thought processes. A further pilot study with follow-up reassessments, including quality of life and mental health, aims to investigate the longer-term impact of the WELLHEAD Toolkit in older people without dementia, exploring spiritual health within ageing.

The WELLHEAD Toolkit offers structured resources suitable for those with mild-moderate dementia. It is unlikely to suit those with more severe dementia but there may be scope to adapt resources even in those circumstances, and the use of communication support should be explored. Further work to better establish the Toolkit’s impact and application should incorporate comparative measures of mental health such as anxiety and depression, which both featured in Mr Grey’s narrative. Detailed guidance within the WELLHEAD Toolkit manual does not replace the provision of additional training for healthcare professionals about spirituality, and indeed awareness may need to be raised for it to be consistently identified as an issue worthy of support (MacKenzie and Mumby Citation2022). While subject to the usual limitations of single case studies, which are by nature specific, Mr Grey’s narrative shows the potential to use the WELLHEAD Toolkit with people with dementia. It provides resources for using residual language and cognitive skills via supported communication, as part of ‘knowing people deeply’ (Volkmer et al. Citation2023), to both assess and support their spiritual health.

Conclusions

Considering and supporting spiritual health in the early stages of dementia is crucial, while language and communication skills still open the door for shared reflections. Overlooking communication issues in dementia may lock away spiritual needs. This narrative illustrates the value of providing communication and memory support via the WELLHEAD Toolkit. Illuminating issues of meaning and purpose, acknowledging them and finding a way forward has potential for profoundly influencing long-term health and wellbeing. Mr Grey received additional targeted chaplaincy support and confirmed at follow-up that there had been healing and resolution of some of his painful experiences. In consequence, as his dementia progressed further he conveyed a greater sense of inner peace through his relationships and demeanour. Without using the WELLHEAD Toolkit, these issues would have gone unrecognised. His preconceptions prior to the Toolkit interview precluded access to specialist spiritual support. Deteriorating verbal and cognitive skills restricted comforting self-talk, rationalisation about the root of emotional pain, and dialogue with others. Left unaddressed, such issues had the potential to generate painful emotional outbursts as his dementia progressed, making early consideration vital. These findings offer a basis for evaluating wider application of the WELLHEAD Toolkit to support spiritual health in dementia.