Linking Lives Through Care: Two Studies Exploring Care as a Relational Process in Dementia Care

Abstract

Background: Dementia is a neurological disorder affecting comprehension, communication and memory, and those living with dementia become progressively dependent on care from others. Despite considerable care needs, however, older adults with dementia are rarely consulted about their own care. The biomedical discourse of deficit and decline has marginalised their voices both in research, where methods mostly rely on verbal conversation and recall, and during care, where caregiving is often perceived as unidirectional. This detracts from understanding dementia care as a relational process. In this dissertation my overall purpose has been to investigate the process of relational care, using research methods that create space for and make visible the participation of older adults with dementia. Objectives: My dissertation is article-based and includes two studies. My first study objective was to critically review the literature on inclusive communication during everyday care routines in long-term care through a qualitative meta-ethnography. My second study objective was to examine how care practices are enacted over time in families living with dementia using a small stories research model of inquiry and multi-modal approach to communication. Ten dyads, each including a participant with dementia and their family member, participated in the study. The interview process included two individual interviews with family member participants, followed by a dyad interview designed as a joint storytelling activity. A further objective of my second study was to qualitatively evaluate the methods used (small stories and objects) to accommodate differences in communication. Tronto's ethic of care served as a theoretical framework for both studies. Findings: In my first study findings I highlight the concept of doing with to represent an approach to care in which both people are actively engaged. This was seen to involve skills in creating space for older adults with dementia to participate during care activities, an orientation towards responsiveness and sensitivity to non-verbal communication. In my second study, I trace the origins, evolution and ongoingness of particular care practices in the lives of six family dyads where symptoms of dementia are advanced. This brought to light the past and present influence of participants with dementia as well as ongoing adaptations by family members to accommodate dementia and sustain connection. During the dyad interviews, the inclusion of objects alongside small stories allowed for an interplay between verbal and non-verbal interactions that opened space for participants with dementia to contribute as co-tellers. The stories that were told - about mutuality, inclusion and food and feeding - highlight the role played by familiar care practices in mediating (maintaining, continuing and repairing) relationship as symptoms of dementia advance. The concepts of doing with, creating space and responsiveness were seen to apply equally to activities of care, storytelling and research. Conclusions and Implications: These findings underline the importance of foregrounding the participation of older adults with dementia in furthering knowledge about care that is relational. They also highlight the importance of an inclusive communication environment to support their participation, whether during care or in conversations about care.