title: Challenges in conducting qualitative research with individuals with dementia.
abstract: Qualitative research can capture the meaningful experiences and life values of individuals with dementia not reported in quantitative studies. This article shares a personal experience of the challenges faced and the lessons learned while conducting a qualitative study of 15 people with early-stage Alzheimer's disease. The purpose of this article is to discuss the issues concerning determination of capacity to consent to research, consent/assent, communication challenges, and trustworthiness of data when conducting a qualitative study of people with dementia. Understanding communication challenges related to dementia is important to develop effective communication strategies, such as simplifying the structure of questions, allowing ample time for the participant's response, using reminiscence, and redirecting the dialogue. This information will be valuable to researchers conducting qualitative studies and the resulting contributions to the body of knowledge about Alzheimer's disease.
authors.affiliation: Vanderbilt University School of Nursing, Nashville, Tennessee 37240, USA. linda.m.beuscher@vanderbilt.edu
authors.forename: Linda
authors.initials: L
authors.lastname: Beuscher
authors.forename: Victoria T
authors.initials: VT
authors.lastname: Grando
mesh_terms: D000368:Aged; D003144:Communication Barriers; D003625:Data Collection / Q000941:ethics / Q000379:methods; D003704:Dementia / Q000451:nursing / Q000523:psychology; D005260:Female; D015577:Geriatric Assessment / Q000379:methods; D006801:Humans; D007258:Informed Consent / Q000941:ethics / Q000523:psychology; D008297:Male; D016743:Mental Competency / Q000523:psychology; D009730:Nursing Assessment / Q000379:methods; D015404:Nursing Methodology Research / Q000941:ethics / Q000379:methods*; D010344:Patient Advocacy / Q000941:ethics / Q000523:psychology; D036301:Qualitative Research; D012107:Research Design; D035844:Researcher-Subject Relations / Q000941:ethics / Q000523:psychology; D011795:Surveys and Questionnaires