Bridget Jones1, Heather Gage2, Christian Bakker3, Helena Barrios4, Sarah Boucault5, Johannes Mayer6, Anna Metcalfe7, Joany Millenaar8, Wendy Parker9, Anneli Orrung Wallin10. 1. Surrey Health Economics Centre, School of Economics, University of Surrey, Guildford, Surrey, GU2 7XH England, UK. Electronic address: b.e.jones@surrey.ac.uk. 2. Surrey Health Economics Centre, School of Economics, University of Surrey, Guildford, Surrey, GU2 7XH England, UK. Electronic address: h.gage@surrey.ac.uk. 3. School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, The Netherlands. Electronic address: Christian.Bakker@radboudumc.nl. 4. Institute of Molecular Medicine and Faculty of Medicine, University of Lisbon, Portugal. Electronic address: helenabarrios@gmail.com. 5. Université Pierre et Marie Curie, Hôpital Pitié Salpêtrière, Paris, France. Electronic address: sarah.boucault@aphp.fr. 6. Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar, Technische Universität München, Munich, Germany. Electronic address: Johannes.Mayer@mri.tum.de. 7. Université Pierre et Marie Curie, Hôpital Pitié Salpêtrière, Paris, France. Electronic address: anna.metcalfe@aphp.fr. 8. School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, The Netherlands. Electronic address: joany.millenaar@maastrichtuniversity.nl. 9. Surrey Health Economics Centre, School of Economics, University of Surrey, Guildford, Surrey, GU2 7XH England, UK. Electronic address: w.parker@surrey.ac.uk. 10. Department of Health and Society, Kristianstad University, Kristianstad, Sweden. Electronic address: anneli.orrung_wallin@hkr.se.
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.
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.