Turbulence and Transformation: Caregiving Spouses’ use of Communication in Managing and Sustaining Relationship Across the Prolonged Transition of Alzheimer’s Disease and Related Dementias

Abstract

The degenerative nature of Alzheimer’s disease and related dementias (ADRD) poses incredible challenges to relating and maintaining relational connection for individuals living with the disease and their spouses/romantic partners. Alzheimer’s disease creates a prolonged period of relational transition in which caregiving spouses must adapt to the ever-changing symptoms and behavior of their partner. Applying relational turbulence theory and relational turning points as sensitizing concepts, this study investigated the role of communication in shaping and navigating relational turning points and relational uncertainty across this prolonged relational transition. Data were collected through in-depth interviews with 18 caregiving spouses of people with ADRD and were analyzed using the constant comparative method of thematic analysis. Analysis of four research questions regarding relational turning points, relational uncertainty, and the communication of caregiving spouses and their partners yielded 18 themes and 11 subthemes. Caregiving spouses experienced four relational changes (my spouse has Alzheimer’s disease, from spouse to caregiver, my spouse is gone, and transcending through love) across the prolonged transition that were prompted by nine relational turning points (early symptoms shift the relationship, spouses’ diagnosis, loss of driving privileges, shifting household responsibilities, no more romance, increasingly severe symptoms, no more deep conversations, didn’t remember my name, and changes in living arrangements). These relational turning points provide detailed insight into the relational changes that occur across the disease trajectory. Experiences of relational uncertainty (I don’t know who my partner will become, I don’t know if I can make it through this, and relationship change and loss are certain) were shaped by the certainties of cognitive decline and death in ADRD. These findings shed light on the unique experience of relational uncertainty in end of life transitions. Communication shaped the relational turning points and in facilitating and interfering with relationships across this prolonged transition. Caregiving spouses employed six communication strategies to maintain companionship and closeness (daily conversations and activities, open and intimate conversations, and communicating love and affection) and to manage the challenges of the disease (direct and difficult conversations, avoiding confrontation, and avoiding talking about or bringing attention to Alzheimer’s disease). Together, these findings shed light on the relational changes that occur in ADRD and the role of communication in shaping and navigating these changes.