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Availability of information on young onset dementia for patients and carers in six European countries
England.
England.
Holland.
Portugal.
Show others and affiliations
2017 (English)In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, S0738-3991(17)30426-3Article in journal (Refereed) Epub ahead of print
Abstract [en]

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.

Place, publisher, year, edition, pages
2017. S0738-3991(17)30426-3
Keyword [en]
European countries, Information, Young onset dementia
National Category
Health Sciences
Identifiers
URN: urn:nbn:se:hkr:diva-17416DOI: 10.1016/j.pec.2017.07.013PubMedID: 28843442OAI: oai:DiVA.org:hkr-17416DiVA: diva2:1148464
Projects
RHAPSODY research and strategy for dementia in the young
Available from: 2017-10-11 Created: 2017-10-11 Last updated: 2017-10-17Bibliographically approved

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Wallin, Anneli Orrung
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CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf