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

doi:10.1016/j.pec.2017.07.013

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

Forskningsoutput: Tidskriftsbidrag › Artikel › Peer review

15 Citeringar (Scopus)

Sammanfattning

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.

Originalspråk	Engelska
Sidor (från-till)	159-165
Antal sidor	6
Tidskrift	Patient Education and Counseling
Volym	101
Nummer	1
DOI	https://doi.org/10.1016/j.pec.2017.07.013
Status	Publicerad - 2018

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10.1016/j.pec.2017.07.013

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title = "Availability of information on young onset dementia for patients and carers in six European countries",

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.",

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author = "Bridget Jones and Heather Gage and Christian Bakker and Helena Barrios and Sarah Boucault and Johannes Mayer and Anna Metcalfe and Joany Millenaar and Wendy Parker and Wallin, {Anneli Orrung}",

year = "2018",

doi = "10.1016/j.pec.2017.07.013",

language = "English",

volume = "101",

pages = "159--165",

journal = "Patient Education and Counseling",

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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

PY - 2018

Y1 - 2018

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.

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.

KW - European countries

KW - Information

KW - Young onset dementia

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DO - 10.1016/j.pec.2017.07.013

M3 - Article

SN - 0738-3991

VL - 101

SP - 159

EP - 165

JO - Patient Education and Counseling

JF - Patient Education and Counseling

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

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