Quality of Life and the Experience of Living with Early-Stage Alzheimer’s Disease

Author:

Villarejo-Galende Alberto12,García-Arcelay Elena3,Piñol-Ripoll Gerard4,del Olmo-Rodríguez Antonio5,Viñuela Félix6,Boada Mercè27,Franco-Macías Emilio8,Ibañez de la Peña Almudena9,Riverol Mario10,Puig-Pijoan Albert11,Abizanda-Soler Pedro12,Arroyo Rafael13,Baquero-Toledo Miquel14,Feria-Vilar Inmaculada15,Balasa Mircea16,Berbel Ángel17,Rodríguez-Rodríguez Eloy18,Vieira-Campos Alba19,García-Ribas Guillermo1,Rodrigo-Herrero Silvia1,Terrancle Ángeles3,Prefasi Daniel3,Lleó Alberto21,Maurino Jorge3

Affiliation:

1. Department of Neurology, Hospital Universitario 12 de Octubre, Instituto de Investigación Hospital 12 de Octubre (I+12), Madrid, Spain

2. Networking Research Center on Neurodegenerative Diseases (CIBERNED), Instituto de Salud Carlos III, Madrid, Spain

3. Medical Department, Roche Farma, Madrid, Spain

4. Cognitive Disorders Unit, Hospital Universitari Santa Maria de Lleida, Institut de Recerca Biomédica de Lleida (IRBLLeida), Lleida, Spain

5. Department of Neurology, Hospital Universitario Dr. Peset, Valencia, Spain

6. Instituto Neurológico Andaluz, Hospital Victoria Eugenia, Unidad Deterioro Cognitivo, Hospital Universitario Virgen Macarena, Sevilla, Spain

7. Ace Alzheimer Center Barcelona, Universitat Internacional de Catalunya, Barcelona, Spain

8. Dementia Unit, Department of Neurology, Hospital Universitario Virgen del Rocío, Instituto de Biomedicina de Sevilla (IBiS), Sevilla, Spain

9. Centro de Investigación de Parkinson, Policlínica Guipúzcoa, San Sebastián, Spain

10. Department of Neurology, Clínica Universidad de Navarra, Universidad de Navarra, Pamplona, Spain

11. Cognitive Impairment and Movement Disorders Unit, Department of Neurology, Hospital del Mar, Hospital Del Mar Medical Research Institute (IMIM), Barcelona, Spain

12. Department of Geriatrics, Complejo Hospitalario Universitario de Albacete, Albacete, Spain

13. Department of Neurology, Hospital Universitario Quirónsalud, Madrid, Spain

14. Grup d’Investigació en Malaltia d’Alzheimer, Department of Neurology, Hospital Universitari i Politècnic La Fe, Institut d’Investigació Sanitaria La Fe, Valencia, Spain

15. Department of Neurology, Complejo Hospitalario Universitario de Albacete, Albacete, Spain

16. Alzheimer’s Disease and other Cognitive Disorders Unit, Hospital Clínic, Institut d’Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), Barcelona, Spain

17. Department of Neurology, Hospital Central de la Cruz Roja, Madrid, Spain

18. Department of Neurology, Hospital Universitario de Marqués de Valdecilla, Instituto de Investigación Sanitaria Valdecilla (IDIVAL), Universidad de Cantabria, Santander, Spain

19. Department of Neurology, Hospital Universitario de La Princesa, Madrid, Spain

Abstract

Background: There is a need to better understand the experience of patients living with Alzheimer's disease (AD) in the early stages. Objective: The aim of the study was to evaluate the perception of quality of life in patients with early-stage AD. Methods: A multicenter, non-interventional study was conducted including patients of 50–90 years of age with prodromal or mild AD, a Mini-Mental State Examination (MMSE) score ≥22, and a Clinical Dementia Rating-Global score (CDR-GS) of 0.5.–1.0. The Quality of Life in Alzheimer ’s Disease (QoL-AD) questionnaire was used to assess health-related quality of life. A battery of self-report instruments was used to evaluate different psychological and behavioral domains. Associations between the QoL-AD and other outcome measures were analyzed using Spearman’s rank correlations. Results: A total of 149 patients were included. Mean age (SD) was 72.3 (7.0) years and mean disease duration was 1.4 (1.8) years. Mean MMSE score was 24.6 (2.1). The mean QoL-AD score was 37.9 (4.5). Eighty-three percent (n = 124) of patients had moderate-to-severe hopelessness, 22.1% (n = 33) had depressive symptoms, and 36.9% (n = 55) felt stigmatized. The quality of life showed a significant positive correlation with self-efficacy and negative correlations with depression, emotional and practical consequences, stigma, and hopelessness. Conclusion: Stigma, depressive symptoms, and hopelessness are frequent scenarios in AD negatively impacting quality of life, even in a population with short disease duration and minimal cognitive impairment.

Publisher

IOS Press

Subject

Psychiatry and Mental health,Geriatrics and Gerontology,Clinical Psychology,General Medicine,General Neuroscience

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