We'll fight it as long as we can: Coping with the onset of Alzheimer's disease

Abstract

The onset of dementia places major demands on coping resources, and the development of adaptive coping strategies is crucial in optimizing well-being and minimizing excess disability. Understanding how people with early-stage dementia naturally attempt to adjust and cope is an important starting point in developing interventions that can enhance self-efficacy and adaptive coping. This study aimed to identify and conceptualize the coping strategies used by people with early-stage Alzheimer's disease (AD). Twelve participants with early-stage Alzheimer's and their partners were each interviewed separately on two occasions, and interpretative phenomenological analysis was used to identify themes within their accounts. The ways in which participants tried to adjust fell into two groups reflecting the same continuum, running from self-protective to integrative responding, that characterized reactions, explanations, and emotional responses. Attempts at holding on and compensating were essentially self-protective, and reflected attempts to maintain a sense of self and normality. Developing a fighting spirit and coming to terms reflected attempts to confront the threats head on, view them as a challenge, and respond in a way that balanced struggle with acceptance in order to integrate the changes within the self. Most participants described strategies in the self-protective categories, while fewer gave accounts that fell into the integrative categories. On the basis of the themes identified in the participants' accounts, key areas in which early intervention may facilitate the development of adaptive coping strategies are identified. The results provide a useful foundation for further developing interventions that can assist in enhancing well-being and self-esteem in early-stage AD.