Using poetry as data to explore daily and formal care decision making within African American dementia dyads

• Authors: Kalisha Johnson, Emory University; Fayron Epps, Emory University; MinKyoung Song, Oregon Health & Science University; Karen S Lyons, Connell School of Nursing, Boston College; Martha Driessnack, Oregon Health & Science University
• Journal Title: GERIATRIC NURSING
• Volume: Volume 42, Number 4
• Publisher: MOSBY-ELSEVIER | 2021-06-05, Pages 919-925
• Type of Work: Article | Post-print: After Peer Review
• Publisher DOI: http://doi.org/10.1016/j.gerinurse.2021.05.001
• Subjects: Health Sciences, Nursing
• Keywords: Science & Technology; Life Sciences & Biomedicine; Geriatrics & Gerontology; Gerontology; Nursing; Decision making; Black American; Qualitative; Alzheimer's disease and related dementias; MONTREAL COGNITIVE ASSESSMENT; TO-MODERATE DEMENTIA; QUALITY-OF-LIFE; INDIVIDUALS; PERCEPTIONS; CAREGIVERS; PEOPLE; HEALTH; INVOLVEMENT; DISCREPANCY

Abstract

There is limited research exploring how daily and formal care decision making occurs within African American dementia dyads as well as how these dyads navigate decision making across the dementia trajectory. Through semi-structured interviews, five African American dementia dyads shared their decision-making processes. We used a multimethod approach to the analysis of data, including qualitative and quantitative content analysis and the creation of I Poems. This novel use of I Poems provided a uniquely personal account of the lived experiences of the African American persons living with dementia, while other analyses revealed that within dyads, daily care decision making was led by African American persons living with dementia, whereas formal care decision making varied between dyads. There was intra-dyad congruence regarding who the final decision maker was in daily and formal care. Clinicians and researchers may be able to tailor interventions based on the dyad's involvement in these decision-making processes.