“guid times wi the bad times”: the meanings and experiences of befriending for people living alone with dementia

Abstract

Befriending is typically a third sector service in which volunteers provide companionship and support usually to people who are lonely or isolated, most often through one-to-one, face-to-face visits. In the UK around a third of people with dementia live alone. Both UK and Scottish governments include befriending in their national strategies to improve the lives of people affected by dementia. From the stance of a social model of disability, befriending is increasingly allied to the ‘dementia-friendly movement’, a broad range of initiatives designed to make communities inclusive, supportive and empowering for people with dementia. Existing literature on befriending for people with dementia – mainly pilot studies and service evaluations – tends to focus on those with more advanced conditions, and their views are absent or filtered through third parties. Taking a holistic, case study approach, and drawing on a range of methodologies, this study explored the experiences and meanings of befriending for individuals living on their own with dementia, from their perspectives, in the contexts of their wider lives. During a series of research visits, relatively unstructured conversations with three participants, combined with ethnographic and reflexive accounts, generated a wealth of multifocal data. This allowed the meanings of befriending to be understood in a wider matrix of biography, personal community, everyday living, disability, and life events. In enacting aspects of befriending, the research relationships themselves yielded insights into the obstacles, processes, delicacies and rewards of getting to know someone. As well as befriending, stories about other relationships – formal and informal, past and present – were especially prominent. Detailed pictures of each person’s social network were developed, and their experiential qualities explored. This led to an awareness of relational gaps and loneliness, and to an appreciation of the distinct place of befriending. The research showed that participants were undergoing multiple transitions, in the here and now, and stretching back in time. Hence, the study questioned decontextualized models of ‘successful’ post-diagnostic transition in dementia, and the tendency to view the lives of people with dementia solely through the prism of ‘dementia’. Relatedly, data analysis also uncovered ‘betwixt and between’ or ‘both/and’ states: for example, individuals were ill and well; coping and struggling. The concept of persistent liminality was used to capture these complex, fluid experiences. Strengths and limitations of the social model of disability were identified. For participants, wellbeing not only involved removing barriers to a full life but also a response to insoluble difficulties and suffering. The project had three key messages. 1) Befriending was a kind of friendship and a kind of service. Participants recognised and valued befriending as a friendship and as a person-centred service: their needs came first in a relationship that was for them but also experienced as mutual and two way. 2) Befriending satisfied unmet needs and wishes for certain kinds of relationship. As ‘facilitated friendship’, befriending enabled individuals to form the sort of closer, compatible, reciprocal social tie they felt they lacked. To different degrees, memory loss affected how much each person could remember about recent visits but everyone recalled what being in their befriending relationship was like and what was good – and occasionally troublesome – about it. The project pointed to the value of using tailored memory aids to reinforce the psychological presence of befrienders. 3) Befriending had the capacity to ‘meet’ individuals in the persistently liminal spaces they inhabited, responding both to surmountable and inherent limitations in their lives. Befrienders helped to foster wellbeing from within ill-being – or, as one participant said, “guid times the bad times”