Previous research has shown that ‘spirituality’ is an essential aspect of dementia care, but that it is a poorly defined and under-researched concept (Scott, 2016). Recognising the value that spiritual care may add to the lives of those living with dementia and the lack of in-depth understanding of ‘spirituality’, we held a hybrid roundtable on Wednesday 18 January 2023 to explore research gaps and opportunities that may lay the foundation for future research on this topic. The event included those from across the Edinburgh Centre for Research on the Experience of Dementia (ECRED) and the Alzheimer Scotland Dementia Research Centre (ASDRC), including those with lived experience, in addition to relevant external stakeholders. This blog summarises what was discussed in the hope that it will stimulate further discussion and future research partnerships.
We began the discussion with Dr Frankie Greenwood sharing two stories from her PhD as a way to set the tone of what spiritual care might look like in practice. You can read the stories here. We then engaged in a facilitated discussion, whereby two key themes emerged:
1. Meaning and spirituality
We spent some time exploring the meaning of spirituality and the challenges in trying to define it, with many questioning whether it is helpful to seek a definition at all. After a group negotiation of the concept, it was suggested that it may be better to think of spirituality as a verb (something you ‘do’ or ‘practice’) rather than as a noun (something static). We explored why we may find defining spirituality challenging and whether this challenge is also part of what it means to research spirituality. Alternative terms were also discussed, such as the Scandinavian use of the term ‘existential’ instead of spirituality. There were also discussions about how to delineate spirituality from other terms such as ‘faith’ and how to recognise spirituality as something that could or could not be connected to ‘religious’ connotations. It was noted that the modern use of the word ‘spirituality’ has only been in usage for around 100 years, and that spirituality isn’t always connected to the idea of ‘providing comfort’. For example, it could be a way to find connection in grief. Relational understandings of spirituality were explored too, such as how a spirit may connect with another spirit, and how relationship creation could be a form of spiritual engagement.
2. Spirituality in practice
We discussed what it means to do spirituality as part of practice and care. This included exploring spirituality within peer support, as part of compassionate communities, as a form of reciprocal care, and a cocreation of mutuality in a relationship. A key part of the discussion was around how to engage health and social care staff and volunteers in discussions about spirituality. This included discussing how to embody care for ‘the whole person’ living with dementia, and the need to value all people in a community in order to grow a reciprocal community of spiritual care. For example, recognising the importance of understanding spiritual wellness for caregivers as well as those living with dementia to ensure an equal partnership. One suggestion of an important method in future research to understand these relationships was to use creative journaling to explore personal worlds, and to explore the use of journaling as part of future training programmes. Nonetheless, a key challenge that was discussed was how to navigate different care practices for those who have religious faiths and those who do not: does the care need to be different? It was suggested that spiritual care needs to be continuously adapting and responsive to the needs of those living with dementia who may have changing symptoms and experiences. ‘Storytelling’ was also raised as an important tool within understanding spiritual practices, suggesting that stories bring people together and that ‘everything falls into place when you ask someone to tell their story’.
The conversation ended by exploring the importance of this work now in our time of ‘permacrisis’, such as the aftermath of the pandemic and Brexit. The pandemic in particular was raised as having had a big impact on caring practices with now, more than ever, being an important time to explore how to improve holistic care.
We will use our roundtable discussion to inform the development of future research proposals. If you are interested in learning more or being part of this development process, please contact Lindsay Kinnaird.