Socio-Emotional Adaptation Theory: Charting the Emotional Process of Alzheimer's Disease

Abstract

Purpose of the Study: The emotional reactions to the progression of Mild Cognitive Impairment and Alzheimer's disease (MCI/AD) oftentimes present as cognitive or behavioral changes, leading to misguided interventions by Formal Support (paid health care providers). Despite a rich body of literature identifying cognitive and behavioral staging of MCI/AD, the emotional changes that accompany these diagnoses have been largely ignored. The objective of this study was to develop a model of the emotional aspects of MCI/AD. Design and Methods: One hour, semistructured interviews, with 14 patient-Informal Support Partner dyads (N = 28) interviewed concurrently; patients were in various stages of MCI/AD. An interdisciplinary team employed a grounded theory coding process to detect emotional characteristics of the participants with MCI/AD. Results: Emotional reactions were categorized into depression/sadness, apathy, concern/fear, anger/frustration, and acceptance. The emotions did not present linearly along the course of the disease and were instead entwined within a set of complex (positive/negative) interactions including: Relationship with the Informal Support Partner (i.e., teamwork vs infantilization), relationship with the Formal Support (i.e., patient vs disengaged), coping (i.e., adaptive vs nonadaptive), and perceived control (i.e., internal vs external locus-of-control). For example, a person with poor formal and informal support and external locus-of-control may become depressed, a condition that is known to negatively affect cognitive status. Implications: Understanding the emotional reactions of individuals diagnosed with MCI/AD will provide clinicians with information needed to develop treatments suited to current needs of the patient and provide Informal Support Partners insight into cognitive and physical changes associated with MCI/AD.