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

Bridget Jones*, Heather Gage, Christian Bakker, Helena Barrios, Sarah Boucault, Johannes Mayer, Anna Metcalfe, Joany Millenaar, Wendy Parker, Anneli Orrung Wallin, RHAPSODY Study Grp

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


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. (c) 2017 Published by Elsevier Ireland Ltd.
Original languageEnglish
Pages (from-to)159-165
Number of pages7
JournalPatient Education and Counseling
Issue number1
Publication statusPublished - 1 Jan 2018


  • Young onset dementia
  • Information
  • European countries


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