title: Including individuals with memory impairment in the research process: the importance of scales and response categories used in surveys.
abstract: Several ethical considerations emerge when conducting research with memory-impaired individuals, including the individuals' ability to comprehend and accurately respond to survey questions. However, little empirical research exists on how to format surveys to decrease cognitive demands, thereby allowing researchers to more accurately survey this population. The current study presents data from structured interviews with 125 community-residing, memory-impaired older adults about their illness experience. The interview contained 14 scales varying in subjectivity, directionality, and response choice content. While objectivity did not affect participants' ability to use the full range of responses, participants with greater cognitive impairment tended to use simpler, dichotomous response categories, especially when questions had bidirectional response choices. Results suggest that memory-impaired individuals can participate in survey research, that such surveys should contain unidirectional frequency/amount items when possible, and that not all memory-impaired individuals will have difficulty completing surveys.
authors.affiliation: Cleveland State University, Cleveland, OH 44115, USA.
authors.forename: Maura L
authors.initials: ML
authors.lastname: Krestar
authors.forename: Wendy
authors.initials: W
authors.lastname: Looman
authors.forename: Sara
authors.initials: S
authors.lastname: Powers
authors.forename: Nicole
authors.initials: N
authors.lastname: Dawson
authors.forename: Katherine S
authors.initials: KS
authors.lastname: Judge
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D003071:Cognition / Q000941:ethics*; D003072:Cognition Disorders; D032882:Comprehension / Q000941:ethics*; D003625:Data Collection / Q000941:ethics / Q000379:methods*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008569:Memory Disorders; D008875:Middle Aged; D018579:Patient Selection / Q000941:ethics*; D015203:Reproducibility of Results; D035842:Research Subjects / Q000523:psychology*