title: 'I wish they would remember that I forget:' The effects of memory loss on the lives of individuals with mild-to-moderate dementia.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Psychology, The College of Saint Rose, Albany, NY, USA; Department of Psychology, The University of Akron, Akron, OH, USA.
authors.forename: Sara M
authors.initials: SM
authors.lastname: Powers
authors.affiliation: Department of Psychology, Cleveland State University, Cleveland, OH, USA.
authors.forename: Nicole T
authors.initials: NT
authors.lastname: Dawson
authors.affiliation: Department of Clinical Health Sciences, Texas A&M University Kingsville, Kingsville, TX, USA; Department of Psychology, Cleveland State University, Cleveland, OH, USA.
authors.forename: Maura L
authors.initials: ML
authors.lastname: Krestar
authors.affiliation: VA New York Harbor Health Care System, Brooklyn Campus, New York, NY, USA.
authors.forename: Sarah J
authors.initials: SJ
authors.lastname: Yarry
authors.affiliation: Department of Psychology, Cleveland State University, Cleveland, OH, USA; Margaret Blenkner Research Institute, Benjamin Rose Institute on Aging, Cleveland, OH, USA k.judge46@csuohio.edu.
authors.forename: Katherine S
authors.initials: KS
authors.lastname: Judge
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D003704:Dementia / Q000150:complications / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008569:Memory Disorders / Q000150:complications / Q000523:psychology*; D008875:Middle Aged; D012649:Self Concept
keywords: dementia; illness experience; memory loss; stress process model for individuals with dementia; subjective experience