From ‘needing to know’ to ‘needing not to know more’: an interpretative phenomenological analysis of couples' experiences with early‐onset Alzheimer's disease

Abstract

These results show that the couples oscillate between the need to know and the fear of knowing. To protect themselves, they use strategies to reduce their suffering and to distance the disease. The use of these avoidance strategies indicates that certain times in the course of disease management are less appropriate for couples to accept the assistance offered by formal caregivers.