Introduction

The impact of a diagnosis of dementia reaches far beyond the person to whom it is given. It permeates through the family system and to relationships outside the boundaries of the family. While illness brings a unique set of stressors to challenge relationship bonds, including chronicity, unpredictability and social stigma (Lyons et al, 1995), the very nature of dementia is such that a diagnosis results in major tensions and trials within family relationships. Smith et al (2001) reported that dementia pervaded every part of couples’ relationships, for both caregiver and the person with dementia, including spiritual, legal, financial, housing, medical and emotional needs and concerns. In many relationships, the boundaries of roles and responsibilities can be fairly fixed, especially within a spousal relationship, where one partner may take responsibility for managing household budgets, while the other may take responsibility for external house maintenance. When one partner has dementia, many of these task-oriented roles require to be renegotiated and the notion of fixed, bounded demarcation of responsibility changes. Although a person may be experiencing changes in their day-to-day functioning, it is not until a diagnosis is given that the notion of a different self-identity is triggered and the processes of identity renegotiation become evident. Following diagnosis, there will also be a ‘crossing of boundaries’, as roles and identities are reconstructed and reconfigured, for example from ‘person’ to ‘person with dementia’; from ‘person’ to ‘patient’ and from spouse to ‘dependent relative’. By drawing upon the experiences of two married couples, we explore the impact of living with dementia and how they negotiate complex processes to support their identities and roles within their relationships following one spouse being diagnosed with dementia. The nature of caring, based on notions of reciprocity, obligation, intimacy and commitment will also be highlighted. We focus on the processes, both positive and negative, within the spousal relationship that are brought into engagement following a diagnosis of dementia and suggest that it is essential to understanding family relationships that they are viewed as grounded in dynamic processes of role negotiation. In trying to understand these processes, we draw on exchange and equity theory, continuity theory and biographical disruption.