Awareness of Diagnosis in Persons with Early-Stage Alzheimer’s Disease: An Observational Study in Spain

• Published in: Neurology and therapy Vol. 11; no. 3; pp. 1183 - 1192
• Main Authors: Villarejo-Galende, Alberto, García-Arcelay, Elena, Piñol-Ripoll, Gerard, del Olmo-Rodríguez, Antonio, Viñuela, Félix, Boada, Mercè, Franco-Macías, Emilio, de la Peña, Almudena Ibañez, Riverol, Mario, Puig-Pijoan, Albert, Abizanda-Soler, Pedro, Arroyo, Rafael, Baquero-Toledo, Miquel, Feria-Vilar, Inmaculada, Balasa, Mircea, Berbel, Ángel, Rodríguez-Rodríguez, Eloy, Vieira-Campos, Alba, García-Ribas, Guillermo, Rodrigo-Herrero, Silvia, Lleó, Albert, Maurino, Jorge
• Format: Journal Article
• Language: English
• Published: Cheshire Springer Healthcare 01.09.2022
• Subjects: Internal Medicine; Medicine; Medicine & Public Health; Neurology; Original Research; Illness representation; Well-being; Diagnosis; Alzheimer’s disease; Awareness; Quality of life
• ISSN: 2193-8253; 2193-6536
• DOI: 10.1007/s40120-022-00367-3

Introduction Limited information is available on people’s experiences of living with Alzheimer’s disease (AD) at earlier stages. This study assessed awareness of diagnosis among people with early-stage AD and its impact on different person-centered outcome measures. Methods We conducted an observational, cross-sectional study in 21 memory clinics in Spain. Persons aged 50–90 years, diagnosed with prodromal or mild AD (NIA/AA criteria), a Mini Mental State Examination (MMSE) score ≥ 22, and a Clinical Dementia Rating-Global score (CDR-GS) of 0.5 or 1.0 were recruited. The Representations and Adjustment to Dementia Index (RADIX) was used to assess participants’ beliefs about their condition and its consequences. Results A total of 149 persons with early-stage AD were studied. Mean (SD) age was 72.3 (7.0) years and 50.3% were female. Mean duration of AD was 1.4 (1.8) years. Mean MMSE score was 24.6 (2.1) and 87.2% had a CDR-GS score of 0.5. Most participants ( n  = 84, 57.5%) used a descriptive term related to specific AD symptoms (e.g., memory difficulties) when asked what they called their condition. Participants aware of their diagnosis using the term AD ( n  = 66, 45.2%) were younger, had more depressive symptoms, and poorer life satisfaction and quality of life compared to those without awareness of their specific diagnosis. Practical and emotional consequences RADIX scores showed a significant negative correlation with Quality of Life in Alzheimer’s Disease score (rho = − 0.389 and − 0.413, respectively; p  < 0.0001). Years of education was the only predictor of awareness of AD diagnosis [OR = 1.04 (95% CI 1.00–1.08); p  = 0.029]. Conclusions Awareness of diagnosis was a common phenomenon in persons with early-stage AD negatively impacting their quality of life. Understanding illness representations in earlier stages may facilitate implementing optimized care that supports improved quality of life and well-being.