“That's when the relationship shifted”: Relational and communicative turning points in Alzheimer's disease and related dementias

Abstract

This study investigated the relational turning points experienced by caregiving spouses across the trajectory of Alzheimer's disease and related dementias. Data were collected using a modified version of the retrospective interviewing technique which facilitated close analysis of relational turning points and the role of communication in shaping and managing these turning points. Caregiving spouses described nine relational turning points across the disease trajectory. The turning points coalesced under four broad changes in the marital relationship: my spouse has dementia, from spouse to caregiver, my spouse is gone, and transcending dementia through love. Participants used five communication strategies to manage their relationships: having open and intimate conversations, avoiding confrontation, avoiding bringing attention to symptoms, engaging in daily conversations and activities, and communicating love and affection. Findings reveal the specific turning points that mark relational change across the disease trajectory and caregiving Statement of Relevance: This study extends relational turning points literature by providing insight into relational change in an end-of-life context. The turning points identified illustrate both relational loss in dementia as well as caregiving spouses' ability to manage relational change across the prolonged disease trajectory. These findings center communication as a resource for managing relational change and provide caregivers a guide to navigating such change.