Abstract
Purpose
To estimate the relative importance that Alzheimer’s disease (AD) caregivers in the United States and Germany place on preserving patients’ ability to perform activities of daily living.
Methods
US and German residents providing care for a person with AD completed an online preference survey. Each respondent completed five best–worst scaling questions. Each question related to five of 10 activities from the Disability Assessment for Dementia scale. Preference weights, indicating the relative importance of preserving the ability to perform these 10 activities for 36 months, were estimated using maximum-difference scaling. A separate model was estimated for each country.
Results
Four hundred and three US and 400 German caregivers completed the survey. In both countries, preserving a patients’ ability to use the toilet without accidents was the most important activity and handling money was the least important activity. There were few differences between US and German caregivers in the relative importance across activities.
Conclusions
Caregivers generally placed greater importance on preserving basic activities of daily living than on preserving instrumental activities of daily living. Understanding differences in the relative importance of functional items in the DAD may contribute to a better understanding of the benefits of different AD treatment and support measures.
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Acknowledgments
The authors would like to thank the caregivers who chose to participate in either the pilot survey or the main survey of this study. The authors also would like to thank Dr. Paul Coplan, for assisting in the development of this survey. We also would like to thank Dr. Axel Muehlbacher, for his help with adapting the survey to Germany and conducting the German pretest interviews, and Harris Interactive, for programming the online survey, recruiting respondents, administering the online survey, and collecting the data. Finally, the authors would like to thank Angelyn Fairchild and Amy Pugh for assisting with data analysis and Gail Zona for editing the manuscript.
Conflict of interest
This study was sponsored by Pfizer Inc and Janssen Alzheimer Immunotherapy Research & Development, LLC. A. F. Mohamed, A. B. Hauber, F. R. Johnson, and J. Zhang were employees of RTI Health Solutions at the time this study was conducted and were paid consultants to Pfizer and Janssen AI in connection with the development of this manuscript. Michael Grundman was a paid consultant to Janssen AI in the development of this manuscript. Editorial support was provided by Gail Zona at RTI Health Solutions and was funded by Pfizer Inc and Janssen Alzheimer Immunotherapy Research & Development, LLC.
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Hauber, A.B., Mohamed, A.F., Johnson, F.R. et al. Understanding the relative importance of preserving functional abilities in Alzheimer’s disease in the United States and Germany. Qual Life Res 23, 1813–1821 (2014). https://doi.org/10.1007/s11136-013-0620-5
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DOI: https://doi.org/10.1007/s11136-013-0620-5