Peter Kevern

This chapter investigates why the prospect of dementia makes us so afraid. It reflects on our cultural emphasis on an identity based on rational thought and personal independence, and how this leaves us vulnerable to an existential dread in the face of dementia. It then considers how this fear is amplified in the imagery and language used in our popular media. The chapter goes on to consider how we might respond to our collective fear by attention to the language and imagery that we use for people living with dementia; by developing more and different social opportunities; and by attending to the stories of people who have, in different ways, learned to ‘live well’ with dementia. It argues that, when we can see the humanity in people living with dementia, we will lose our existential dread.

There is a widely held belief that narrative meaning-making is an important activity for people suffering from debilitating conditions. Less attention is given to those who are close to them, who may be carrying heavy burdens of their own over an extended period. This is typically a situation of existential stress, and it could be seen as a threat to the existential health of the involved persons. This chapter addresses the process of existential meaning-making as expressed in narratives in an online group discussion by present and former carers of people living with dementia. The act of storytelling is for many caregivers an effort at making sense, combatting chaos, and tolerating ambiguity. Furthermore, sharing narratives can be a collective attempt to find answers to the question of meaning.

The aim of this project was to explore the understanding and awareness of dementia in the Pakistani-origin community in a deprived urban region of the UK. The study was unique in accessing and interviewing Pothwari speakers, some of whom could not read or understand spoken English. Data generated from an earlier study were used to construct five scenarios, which were used as the basis for face-to-face semi-structured interviews with 11 male and female participants from the Pakistani-origin community spanning two generations. Braun and Clarke’s six phases of thematic analysis were used to analyse the data to answer the research questions. Themes constructed from these interviews indicated a lack of awareness and understanding of dementia, a range of attitudes and assumptions, reluctance to seek external support, and a significant role for the cultural background in shaping the individuals’ responses. The study found that poor understanding, cultural differences, and language issues presented barriers to accessing services in the British Pakistani community, particularly among those who had been born in Pakistan and/or spoke Pothwari in preference to English. Services and information may need to be offered by Pothwari speakers in order to reach this neglected sector of the population.

This paper reports on a study that begins to address the paucity of research around the religious motivations of Muslim carers of family members with dementia. Seven carers were recruited for interviews from the British Pakistani Muslim community concentrated in the Midlands and North of England. Interview transcripts were analysed thematically using an iterative collaborative methodology. The findings suggested that the Muslim faith plays a pivotal role as a support mechanism for individual carers and their families, but the wider faith community and its leaders did not typically offer support and could impede access to external care. This was a result of cultural pressure and lack of awareness both among religious leaders and the community as a whole. The study concluded that the inequality in access to dementia services may be constructively addressed if service providers engage with these faith concerns in the community and religious leaders to meet the needs of Muslims of British Pakistani origin.

Although the West has seen influential works on spirituality by individual Japanese authors working in particular spiritual traditions (such as DT Suzuki), the general impression held by Westerners...

The Pastoral da Pessoa Idosa (PPI) is a national voluntary movement linked to the National Conference of Bishops of Brazil (CNBB), comprising approximately 2500 volunteers, who offer guidance and support for well-being to more than 170,000 older people throughout Brazil. This paper analyses the results of a data gathering exercise designed to gain an overview of the scope, support needs and international transferability of the project in ‘normal’ times and during the coronavirus pandemic. A telephone questionnaire comprising 21 questions was launched nationally among PPI volunteers over a single week in May 2020. The dataset (n = 3888) was subjected to exploratory statistical analysis and key findings collated around three guiding questions. The central findings were, first, that the composition of the body of volunteers is changing, requiring changes to training and support; secondly, that the model may be exportable to other middle-income countries in which the Catholic Church does not have the same dominance over the culture, as long as a national organising structure is in place; and finally that the speedy and flexible response of the PPI to the coronavirus pandemic suggests that this type of NGO will have a role in response to future national crises.

Given their stability, their ability to influence public attitudes and capacity to mobilise human resources, it seems likely that many faith communities can have a significant impact on the wellbeing of people living with dementia (PLWD) and their carers, who may be dependent on the commitment of informal communities of support over months or years. This paper reports on a pre–post cohort study undertaken in an Anglican (Church of England) diocese in the UK. Representatives (N = 61) of 11 church communities completed the Dementia Awareness Scale immediately before and 12 months after an intervention to promote ‘Dementia-Friendly Church’ in their congregation. Results showed a robust improvement in scores on both the ‘Knowledge’ and ‘Comfort’ subscales, with the largest effect size in the latter. Within each subscale, improvements were evenly distributed across the individual items. These findings indicate that such an intervention is likely to significantly improve the environment for people living with dementia and their companions who are members of or engage with the Church community. They also suggest that a similar programme could be extended to other intentional communities, whether in faith-based organisations or societies with shared interests.

Historically, spirituality in nursing was considered a fundamental dimension, contributing to patients’ wellbeing. Accordingly, nurses are expected to attend to the spiritual needs of patients as a part of holistic nursing care, and pre-registration nurse education (that is undergraduate nurse education) has a responsibility to equip them to fulfil this aspect of their role. However, the content of spirituality in nurse education programmes lack structure and consistency, hence further investigation into the value of such education and its transferability in clinical practice is needed. Data collection was by individual interviews with 13 pre-registration participants undertaking adult nursing between March 2012 and May 2014. Each interview was digitally recorded and transcribed verbatim. Through theoretical sampling, data collection and analysis occurred in a cyclical manner until theoretical saturation/sufficiency was reached. The participants’ main concerns were: explaining spirituality, remembering spirituality education and content, and uncertainties about facilitating patients’ spiritual needs; these combine to form ‘having sufficient spirituality education to facilitate patients’ spiritual needs’. The substantive theory of ‘Enablement’ (make possible) was constructed to explain how the participants resolved their main concern. This investigation reveals how the participants acquire and translate spirituality education to practice, so realising holistic care.