Awareness of Diagnosis in Persons with Early-Stage Alzheimer's Disease: An Observational Study in Spain
Por:
Villarejo-Galende A, García-Arcelay E, Piñol-Ripoll G, Del Olmo-Rodríguez A, Viñuela F, Boada M, Franco-Macías E, de la Peña AI, Riverol M, Puig-Pijoan A, Abizanda-Soler P, Arroyo R, Baquero-Toledo M, Feria-Vilar I, Balasa M, Berbel Á, Rodríguez-Rodríguez E, Vieira-Campos A, García-Ribas G, Rodrigo-Herrero S, Lleó A and Maurino J
Publicada:
1 sep 2022
Ahead of Print:
1 jun 2022
Resumen:
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.
Filiaciones:
Villarejo-Galende A:
Department of Neurology, Hospital Universitario 12 de Octubre, Instituto de Investigación Hospital 12 de Octubre (I+12), CIBERNED, Madrid, Spain
García-Arcelay E:
Medical Department, Roche Farma, Ribera del Loira 50, 28042, Madrid, Spain
Piñol-Ripoll G:
Unitat Trastorns Cognitius, Hospital Universitari de Santa Maria, Institut de Recerca Biomèdica de Lleida (IRBLLeida), Lleida, Spain
:
Department of Neurology, Hospital Universitario Dr. Peset, Valencia, Spain
Viñuela F:
Instituto Neurológico Andaluz, Hospital Victoria Eugenia, Unidad de Deterioro Cognitivo, Hospital Universitario Virgen Macarena, Sevilla, Spain
Boada M:
Ace Alzheimer Center Barcelona, Universitat Internacional de Catalunya, CIBERNED, Barcelona, Spain
Franco-Macías E:
Dementia Unit, Department of Neurology, Hospital Universitario Virgen del Rocío, Instituto de Biomedicina de Sevilla (IBiS), Sevilla, Spain
de la Peña AI:
Centro de Investigación de Parkinson, Policlínica Guipúzcoa, San Sebastián, Spain
Riverol M:
Department of Neurology, Clínica Universidad de Navarra, Pamplona, Spain
Puig-Pijoan A:
Cognitive Impairment and Movement Disorders Unit, Department of Neurology, Hospital Del Mar Medical Research Institute (IMIM), Barcelona, Spain
Abizanda-Soler P:
Department of Geriatrics, Complejo Hospitalario Universitario de Albacete, Albacete, Spain
Arroyo R:
Department of Neurology, Hospital Universitario Quirónsalud, Madrid, Spain
Baquero-Toledo M:
Department of Neurology, Hospital Universitari i Politècnic La Fe, Institut d'Investigació Sanitaria La Fe, Valencia, Spain
Feria-Vilar I:
Department of Neurology, Complejo Hospitalario Universitario de Albacete, Albacete, Spain
Balasa M:
Alzheimer's Disease and Other Cognitive Disorders Unit, Hospital Clínic, Institut d'Investigacions Biomèdiques August Pi I Sunyer (IDIBAPS), Barcelona, Spain
Berbel Á:
Department of Neurology, Hospital Central de la Cruz Roja, Madrid, Spain
Rodríguez-Rodríguez E:
Department of Neurology, Hospital Universitario Marqués de Valdecilla, Instituto de Investigación Sanitaria Valdecilla (IDIVAL), Santander, Spain
Vieira-Campos A:
Department of Neurology, Hospital Universitario de La Princesa, Madrid, Spain
García-Ribas G:
Department of Neurology, Hospital Universitario Ramón y Cajal, Madrid, Spain
Rodrigo-Herrero S:
Department of Neurology, Hospital Universitario Juan Ramón Jiménez, Huelva, Spain
Lleó A:
Memory Unit, Department of Neurology, Hospital de La Santa Creu i Sant Pau, Biomedical Research Institute Sant Pau, Universitat Autònoma de Barcelona, Barcelona, Spain
Maurino J:
Medical Department, Roche Farma, Ribera del Loira 50, 28042, Madrid, Spain.
Green Published, gold
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