Knowledge, perceptions, and feelings associated with Alzheimer’s disease and related dementias: a qualitative study among middle-aged latinas residing in an underserved agricultural community in California

Abstract

Abstract Background Middle age is increasingly acknowledged as a critical window for prevention of Alzheimer’s disease and related dementia (ADRD) since research has shown that AD develops in the course of 20–30 years (1) but we know very little about middle-aged individuals’ perspectives on ADRD. Knowledge gaps are particularly large for Latinas living in regions typically underrepresented in ADRD research, such as rural and/or agricultural regions. This is important given that over the next 40 years Latinos are projected to have the largest increase in ADRD cases in the U.S. Therefore, this study aims to assess knowledge, perceptions, and feelings associated with ADRD among a sample of middle-age, Spanish-speaking Latina women. Method Using qualitative methods involving semi-structured interviews, we examined knowledge, perceptions, and feelings associated with ADRD among a subsample of the Center for Health Assessment of Mothers and Children of Salinas (CHAMACOS) study. Participants are Latina women residing in an underserved agricultural community entering mid-life (mean = 46.5 years old). Interviews were conducted with 20 women and data was analyzed with inductive thematic content analysis. Results We identified themes regarding perceptions, knowledge, and feelings. First, participants perceive ADRD as involving (1) Loss of memory, (2) Getting lost; (3) Losing the person they once were. With regard to knowledge about ADRD, participants reported: (1) Some knowledge about protective and risk factors for ADRD, (2) No awareness of the links between cardiovascular risk factors and ADRD; (3) A desire to learn prevention methods alongside signs and symptoms of ADRD. Themes related to feelings about ADRD were: (1) Fear of developing ADRD and not being aware of reality or who they are; (2) Worry about losing relationships with loved ones and caretaking if diagnosed with ADRD; (3) Sadness about forgetting one’s family and depending on others if diagnosed with ADRD. Conclusion The knowledge gaps and negative feelings associated with ADRD highlighted in this study underscore the need for ADRD interventions to include CVD prevention, particularly for mid-life Latino populations residing in rural regions.

Keywords

• Alzheimer’s
• Dementia
• Perceptions
• Knowledge
• Feelings
• Agricultural