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Availability of information on young onset dementia for patients and carers in six European countries

Jones, Bridget, Gage, Heather, Bakker, Christian, Barrios, Helena, Boucault, Sarah, Mayer, Johannes, Metcalfe, Anna, Millenaar, Joany, Parker, Wendy and Orrung Wallin, Anneli (2017) Availability of information on young onset dementia for patients and carers in six European countries Patient Education and Counseling.

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Abstract

Objectives To identify information available in six European countries (England, France, Germany, Netherlands, Portugal, Sweden) that addresses the specific needs of people with young onset dementia (YOD) and their carers, and identify gaps. Methods Search of websites of organisations with potential interest in dementia. Narrative synthesis and comparative analysis. Results 21 sources of information were identified (Netherlands 6, England 6, France 3, Germany 2, Portugal 2, Sweden 2); 11 were from voluntary sector organisations. Sources dedicated to YOD were limited (4 websites, 4 books); all other YOD information was sub-entries in generic dementia sources, difficult to locate and with limited coverage of relevant topics. Gaps related to implications of living with YOD in Germany, Portugal and Sweden. Conclusion Availability of information varies among countries, some having no dedicated source and incomplete coverage of issues of importance to YOD. Practical implications Information is an important means of supporting carers; their needs change as the condition progresses. A comprehensive resource collating key information is needed so that the issues that differentiate the specific needs of people living with YOD from those of people with dementia in older age are available and easily located.

Item Type: Article
Divisions : Faculty of Arts and Social Sciences > School of Economics
Authors :
NameEmailORCID
Jones, Bridgetb.e.jones@surrey.ac.ukUNSPECIFIED
Gage, HeatherH.Gage@surrey.ac.ukUNSPECIFIED
Bakker, ChristianUNSPECIFIEDUNSPECIFIED
Barrios, HelenaUNSPECIFIEDUNSPECIFIED
Boucault, SarahUNSPECIFIEDUNSPECIFIED
Mayer, JohannesUNSPECIFIEDUNSPECIFIED
Metcalfe, AnnaUNSPECIFIEDUNSPECIFIED
Millenaar, JoanyUNSPECIFIEDUNSPECIFIED
Parker, WendyW.Parker@surrey.ac.ukUNSPECIFIED
Orrung Wallin, AnneliUNSPECIFIEDUNSPECIFIED
Date : 13 July 2017
Identification Number : 10.1016/j.pec.2017.07.013
Copyright Disclaimer : © 2017 Published by Elsevier Ireland Ltd.
Uncontrolled Keywords : Young onset dementia; Information; European countries
Depositing User : Clive Harris
Date Deposited : 31 Aug 2017 08:01
Last Modified : 31 Aug 2017 08:01
URI: http://epubs.surrey.ac.uk/id/eprint/842081

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