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Alzheimer Europe published papers

Our work

2021

Alzheimer Europe (2021). European Dementia Monitor 2020 - Comparign and benchmarking national dementia strategies and policies. ISBN 978-2-9199578-6-6, Luxembourg, Alzheimer Europe.

Diaz A, Gove D, Nelson M, Smith M, Tochel C, Bintener C, Ly A, Bexelius C, Gustavsson A, Georges J, Gallacher J and Sudlow (2021) Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project. Health Expectations: hex.13246. DOI: 10.1111/hex.13246.

Mank A, van Maurik IS (…/…) Diaz A, Gove D, Scheltens, P, van der Flier WM and Visser LNC (2021). Prognosis of Alzheimer’s disease; what do patients and care partners want to know? [Research Square, preprint]

Faulkner S (…/…) Diaz-Ponce A, Gove D (…/…) Fahy N (2021). Understanding multi-stakeholder needs, preferences and expectations to define effective practices and processes of patient engagement in medicine development: A mixed-methods study. Health Expectations. DOI: 10.1111/hex.13207 https://doi.org/10.1111/hex.13207

Vat LE, Finlay T (…/…) Diaz-Ponce AD et al. (2021). Evaluation of patient engagement in medicine development: A multi-stakeholder framework with metrics. Health Expectations. DOI: 10.1111/hex.13191 https://doi.org/10.1111/hex.13191

Wolverson E, Dunn R, Moniz-Cook E, Gove D and Diaz-Ponce A (2021). The language of behaviour changes in dementia: A mixed methods survey exploring the perspectives of people with dementia. Journal of Advanced Nursing.  DOI: 10.1111/jan.14787 https://doi.org/10.1111/jan.14787

2020

Alzheimer Europe (2020). Dementia in Europe Data sharing in dementia research – the EU landscape. ISBN 978-2-919811-00-7, Luxembourg, Alzheimer Europe.

Alzheimer Europe (2020). Dementia as a European Priority – A Policy Overview. ISBN 978-2-9199578-5-9, Luxembourg, Alzheimer Europe.

Alzheimer Europe (2020). Legal capacity and decision making: The ethical implications of lack of legal capacity on the lives of people with dementia. ISBN 978-2-9199578-7-3, Luxembourg, Alzheimer Europe.

Angehrn Z, Sostar J, Nordon C, Turner A, Gove D et al. (2020). Ethical and Social Implications of Using Predictive Modeling for Alzheimer’s Disease Prevention: A Systematic Literature Review. Journal of Alzheimer's Disease, 76(3): 923 – 940. DOI: 10.3233/JAD-191159. https://doi.org/10.3233/jad-191159

Boada M (…/…) … Georges J et al. (2020). Pre‐screening models for patient engagement: The MOPEAD project: Neuropsychology: Awareness of cognitive capacities and subjective cognitive decline. Alzheimer’s and Dementia, 16(S6). DOI: 10.1002/alz.044796. https://doi.org/10.1002/alz.044796

Clarke C (…/...) Diaz A, Gove D, Vernooij-Dassen M and Wolverson E (2020). Measuring the well-being of people with dementia: a conceptual scoping review. Health and Quality of Life Outcomes, 18(249). DOI: 10.1186/s12955-020-01440-x https://hqlo.biomedcentral.com/track/pdf/10.1186/s12955-020-01440-x.pdf

McKeown A, Turner A, Angehrn Z, Gove D et al. (2020). Health Outcome Prioritization in Alzheimer's Disease: Understanding the Ethical Landscape. Journal of Alzheimer's Disease, 77(2020): 339–353. DOI:10.3233/JAD-191300 https://content.iospress.com/download/journal-of-alzheimers-disease/jad191300?id=journal-of-alzheimers-disease%2Fjad191300

Owens AP, Hinds C, Manyakov NV, Stavropoulos TG, Lavelle G, Gove D, Diaz-Ponce A and Aarsland D (2020). Selecting Remote Measurement Technologies to Optimize Assessment of Function in Early Alzheimer's Disease: A Case Study. Frontiers in Psychiatry, 11, 582207 eCollection 2020. DOI: 10.3389/fpsyt.2020.582207. https://www.frontiersin.org/articles/10.3389/fpsyt.2020.582207/full

Roberts C, Rochford-Brennan H, Goodrick J, Gove D, Diaz-Ponce A and Georges J (2020). Our reflections of Patient and Public Involvement in research as members of the European Working Group of People with Dementia. Dementia, 19(1): 10-17. DOI: 10.1177/1471301219876402. https://doi.org/10.1177/1471301219876402

Sannemann L (…/…) Georges J (…/…) Jessen F (2020). General practitioners’ opinion on early and pre‐dementia diagnosis of AD: A MOPEAD project survey in five European countries: Neuropsychiatry and behavioral neurology/Mild cognitive impairment/Early symptomatic disease. Alzheimer’s and Dementia, 16(S6). DOI: 10.1002/alz.040357. https://doi.org/10.1002/alz.040357

Solomon A (…/…) Georges J and Middleton L (2020). EURO‐FINGERS/UK FINGERS (Europe): World‐Wide FINGERS network: The first global network of multidomain dementia prevention trials. Alzheimer’s and Dementia, 16(S10). DOI: 10.1002/alz.046949. https://doi.org/10.1002/alz.046949

Steen Frederiksen K (…/…) Georges J (…/…) Waldemar G (2020). European Academy of Neurology/European Alzheimer’s Disease Consortium position statement on diagnostic disclosure, biomarker counseling, and management of patients with mild cognitive impairment. European Journal of Neurology, 001:1-9. DOI: 10.1111/ene.14668

Steen Frederiksen K (…/…) Georges J (…/…) Waldemar G (2020). A European Academy of Neurology guideline on medical management issues in dementia. European Journal of Neurology, 27(2 Suppl.). DOI: 10.1111/ene.14412. https://doi.org/10.1111/ene.14412

Vat LE, Finlay T, Schuitmaker-Warnaar TJ (…/…) Diaz A et al. (2020). Evaluating the “return on patient engagement initiatives” in medicines research and development: a literature review. Health Expectations, 23(1): 5-18. DOI: 10.1111/hex.12951. https://doi.org/10.1111/hex.12951

2019

Alzheimer Europe (2019) Overcoming ethical challenges affecting the involvement of people with dementia in research: recognising diversity and promoting inclusive research issues linked to restrictions of freedom of people with dementia. ISBN 978-2-9199578-0-4, Luxembourg, Alzheimer Europe.

Alzheimer Europe (2019) Dementia in Europe 2019: Estimating the prevalence of dementia in Europe. ISBN 978-99959-995-9-9, Luxembourg, Alzheimer Europe.

Angehrn Z, Nordon C, Turner A, Gove D et al (2019). Ethical and social implications of using predictive modeling for Alzheimer’s disease prevention: a systematic literature review protocol, BMJ Open 9:e026468. DOI: 10.1136/bmjopen-2018-026468. https://bmjopen.bmj.com/content/9/3/e026468.info

Gallacher J (…/…) Bintener C, Bouvy JC, Campo L, Diaz C, Georges J (…/…) and ROADMAP Consortium (2019). Challenges for Optimizing Real-World Evidence in Alzheimer's Disease: The ROADMAP Project. Journal of Alzheimer’s Disease, 67(2): 495-501. DOI: 10.3233/JAD-180370. https://content.iospress.com/download/journal-of-alzheimers-disease/jad180370?id=journal-of-alzheimers-disease%2Fjad180370

Krolak-Salmon P (…/…) Georges J, Borson S, Leperre-Desplanques A (2019). Toward a Sequential Strategy for Diagnosing Neurocognitive Disorders: A Consensus from the "Act On Dementia" European Joint Action. Journal of Alzheimer’s Disease, 72(2): 363-372. DOI: 10.3233/JAD-190461. https://doi.org/10.3233/jad-190461

Rodríguez-Gómez O, Rodrigo A, Iradier F, Santos-Santos MA (…/…) Gove D (…/…) Bintener C (…/…) Georges J and the MOPEAD Consortium (2019). The MOPEAD project: Advancing patient engagement for the detection of "hidden" undiagnosed cases of Alzheimer's disease in the community. Alzheimer's & Dementia, 15(6): 828-839. DOI: 10.1016/j.jalz.2019.02.003. https://www.sciencedirect.com/science/article/pii/S155252601930072X?via%3Dihub

Wagg A, Gove D, Leichsenring K et al. (2019). Development of quality outcome indicators to improve the quality of urinary and faecal continence care. International Urogynecology Journal, 30: 23–32. DOI: 10.1007/s00192-018-3768-2 https://link.springer.com/content/pdf/10.1007/s00192-018-3768-2.pdf

Woods B, Arosio F, Diaz A, Gove D, Holmerová I, (…/…) and Georges J (2019). Timely diagnosis of dementia? Family carers' experiences in 5 European countries. International Journal of Geriatric Psychiatry, 34(1): 114-121. DOI: 10.1002/gps.4997 https://onlinelibrary.wiley.com/doi/full/10.1002/gps.4997

2018

Alzheimer Europe (2018) Dementia in Europe Yearbook 2018: Comparison of national dementia strategies in Europe. ISBN 978-999959-995-4-4, Luxembourg, Alzheimer Europe.

Alzheimer Europe (2018) European Carers’ Report 2018: Carers’ experiences of diagnosis in five European countries. ISBN 978-999959-995-2-0, Luxembourg, Alzheimer Europe.

Alzheimer Europe (2018) The development of intercultural care and support for people with dementia from minority ethnic groups. ISBN 978-2-9599755-5-1, Luxembourg. Alzheimer Europe.

Gove D, Diaz-Ponce A, Georges J, Moniz-Cook E, Mountain G, Chattat R, Øksnebjerg L and the European Working Group of People with Dementia (2018). Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement). Aging and Mental Health, 22(6): 723-729. DOI: 10.1080/13607863.2017.1317334 https://www.tandfonline.com/doi/pdf/10.1080/13607863.2017.1317334?needAccess=true

Milne R, Bunnik E, Diaz A, Richard E, Badger S, Gove D, Georges J et al. (2018). Perspectives on Communicating Biomarker-Based Assessments of Alzheimer's Disease to Cognitively Healthy Individuals. Journal of Alzheimer’s Disease, 62(2): 487-498. DOI: 10.3233/JAD-170813 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5836405/pdf/jad-62-jad170813.pdf

Milne R, Diaz A, Badger S, Bunnik E, Fauria K and Wells K (2018). At, with and beyond risk: expectations of living with the possibility of future dementia. Sociology of Health & Illness, 40(6): 969-987. DOI: 10.1111/1467-9566.12731. https://doi.org/10.1111/1467-9566.12731

Øksnebjerg L, Diaz‐Ponce A, Gove D, Moniz‐Cook E, Mountain G, Chattat R and Woods B (2018). Towards capturing meaningful outcomes for people with dementia in psychosocial intervention research: A pan‐European consultation. Health Expectations, 21(6): 1056-1065, DOI: 10.1111/hex.12799 https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.12799

Thorogood A, Mäki-Petäjä-Leinonen A (…/…) Gove D (…/…) Global Alliance for Genomics and Health, Ageing and Dementia Task Team (2018). Consent recommendations for research and international data sharing involving persons with dementia. Alzheimer's & Dementia, 14(10): 1334-1343. DOI: 10.1016/j.jalz.2018.05.011 https://www.sciencedirect.com/science/article/pii/S1552526018301651  

2017

Alzheimer Europe (2017) Dementia as a disability? Implications for ethics, policy and practice – A discussion paper. ISBN 978-999959-995-1-3, Luxembourg, Alzheimer Europe.

Alzheimer Europe (2017) Dementia in Europe Yearbook 2017: Standards for residential care facilities in Europe. ISBN 978-999959-995-0-6, Luxembourg, Alzheimer Europe.

Alzheimer Europe (2017) European Dementia Monitor 2017: Comparing and benchmarking national dementia strategies and policies. ISBN 978-999959-995-0-6, Luxembourg, Alzheimer Europe.

Dröes RM, Chattat R, Diaz A, Gove D, (…/…) and the INTERDEM Social Health Taskforce (2017). Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice. Aging & Mental Health, 21(1): 4-17. DOI: 10.1080/13607863.2016.1254596 https://www.tandfonline.com/doi/full/10.1080/13607863.2016.1254596

Gove D, Diaz-Ponce A and Georges J (2017). Palliative care covers more than end-of-life issues: why is this not common practice in dementia care and what are the implications? Annals of Palliative Medicine, 6(4): 390-392. DOI: 10.21037/apm.2017.06.25  https://apm.amegroups.com/article/view/15538/15678

Gove D, Scerri A, Georges J et al. (2017). Continence care for people with dementia living at home in Europe: a review of literature with a focus on problems and challenges. Journal of Clinical Nursing, 26(3-4): 356-365. DOI: 10.1111/jocn.13582 https://onlinelibrary.wiley.com/doi/full/10.1111/jocn.13582

Milne R, Bunnik K, Tromp S, Bemelmans S, Badger S, Gove D et al. (2017). Ethical issues in the development of readiness cohorts in Alzheimer’s disease research. Journal of Prevention of Alzheimer’s Disease, 4(2):125-131. DOI: 10.14283/jpad.2017.5. https://doi.org/10.14283/jpad.2017.5

2016

Alzheimer Europe (2016). Discussion paper on ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease. ISBN 978-99959-863-9-1, Luxembourg: Alzheimer Europe.

Alzheimer Europe (2016), Decision making and legal capacity in dementia. ISBN 978-99959-863-8-4, Luxembourg, Alzheimer Europe.

Gove D, Downs M, Vernooij-Dassen M and Small N (2016). Stigma and GPs’ perceptions of dementia. Aging & Mental Health, 20(4): 391-400. DOI: 10.1080/13607863.2015.1015962. https://doi.org/10.1080/13607863.2015.1015962

Meiland F, Innes A, Mountain G, Robinson L, Roest van Der H, García-Casal JA, Gove D et al. (2016). Technologies to support community-dwelling persons with dementia: an INTERDEM position paper on issues regarding development, usability, (cost-) effectiveness, deployment and ethics. JMIR Rehabil Assist Technol, 4(1). DOI: 10.2196/rehab.6376 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5454557/

Gerritsen D, Oyebode J and Gove D (2016). Ethical implications of the perception and portrayal of dementia. Dementia, Volume 17(5): 596-608. DOI: 10.1177/1471301216654036. https://doi.org/10.1177/1471301216654036

Van der Steen JT, Radbruch L (…/…) Gove D (…/…) and on behalf of the European Association for Palliative Care (2016). Achieving consensus and controversy around applicability of palliative care to dementia. International Psychogeriatrics, 28(1):133-45. DOI: 10.1017/S1041610215000824. https://doi.org/10.1017/s1041610215000824

 

 
 

Last Updated: Tuesday 13 April 2021

 

 
 

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