TY - JOUR
T1 - Availability of information on young onset dementia for patients and carers in six European countries
AU - Jones, Bridget
AU - Gage, Heather
AU - Bakker, Christian
AU - Barrios, Helena
AU - Boucault, Sarah
AU - Mayer, Johannes
AU - Metcalfe, Anna
AU - Millenaar, Joany
AU - Parker, Wendy
AU - Wallin, Anneli Orrung
AU - RHAPSODY Study Grp
PY - 2018/1/1
Y1 - 2018/1/1
N2 - 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.
AB - 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.
KW - Young onset dementia
KW - Information
KW - European countries
KW - ALZHEIMERS-DISEASE
KW - FAMILY CAREGIVERS
KW - GUIDELINES
KW - DIAGNOSIS
KW - PEOPLE
KW - NEEDS
U2 - 10.1016/j.pec.2017.07.013
DO - 10.1016/j.pec.2017.07.013
M3 - Article
C2 - 28843442
SN - 0738-3991
VL - 101
SP - 159
EP - 165
JO - Patient Education and Counseling
JF - Patient Education and Counseling
IS - 1
ER -