'I wish they would remember that I forget:' The effects of memory loss on the lives of individuals with mild-to-moderate dementia.

Abstract

Due to changing cognitive and functional capabilities, individuals with dementia face challenging care-related issues such as feelings of embarrassment, relationship strain, and symptoms of depression and anxiety. Limited research exists examining individuals with dementia's perceptions and concerns about these issues and how their perspectives can impact the quality and process of their illness experience. As part of a larger study, individuals with dementia (n = 114) answered five open-ended questions about their illness experience including: (1) daily routine, (2) concerns about memory loss, (3) relationships with others, (4) fears, and (5) what they wish others understood/knew. For each question, individuals with dementia's responses were analyzed for common themes within and across questions. Individuals with dementia commented on a wide range of issues involving their memory loss, including negative emotional impacts, future concerns and illness progression, forgetting, loss of independence, and the negative and positive influences on interpersonal relationships. Across questions, many individuals also stated that their memory loss did not significantly impact their lives. Discussion highlights how these findings can be used to expand our understanding of individuals with dementia's illness experience and to develop efficacious interventions for addressing negative aspects of living with memory loss while supporting positive aspects.