Publications

2022


van Gils AM, Visser LNC, Hendriksen HMA, Georges J et al. (2022). Development and design of a diagnostic report to support communication in dementia: Co‐creation with patients and care partners. Alzheimer’s & Dementia: Diagnosis Assessment & Disease Monitoring. 14(1). DOI: 10.1002/dad2.12333

Alzheimer Europe (2022). Dementia in Europe Yearbook 2021: Dementia-inclusive Communities and initiatives across Europe. ISBN 978-2-919811-02-1, Luxembourg, Alzheimer Europe

Gustavsson A, Norton N, Fast T, Frölich L, Georges J et al. (2022). Global estimates on the number of persons across the Alzheimer’s disease continuum. Alzheimer’s & Dementia. DOI: 10.1002/alz.12694

Jessen F, Georges J, Wortmann M, Benham-Hermetz S. (2022). What Matters to Patients with Alzheimer’s Disease and Their Care Partners? Implications for Understanding the Value of Future Interventions. The Journal Of Prevention of Alzheimer’s Disease9(3): 550-555. DOI: 10.14283/jpad.2022.22

van Corven CTM, Bielderman A, Diaz Ponce A, Gove D, Georges J, Graff MJL, Gerritsen DL. (2022). Empowering interventions for people living with dementia: A European survey. Journal of Advanced Nursing. DOI: 10.1111/jan.15385

 

2021


Boada M, Rodrigo A, Jessen F, Winblad B, Kramberger MG (…/…) Georges J et al. (2021). Complementary pre‐screening strategies to uncover hidden prodromal and mild Alzheimer’s disease: Results from the MOPEAD project. Alzheimer’s & Dementia. 18(6): 1119-1127. DOI: 10.1002/alz.12441

Boccardi M, Monsch AU, Ferrari C, Altomare D, Berres M (.../...) Georges J et al. (2021). Harmonizing neuropsychological assessment for mild neurocognitive disorders in Europe. Alzheimer’s & Dementia. 18(1): 29-42. DOI: 10.1002/alz.12365

Diaz A, Gove D, Nelson M, Smith M, Tochel C, Bintener C, Ly A, Bexelius C, Gustavsson A, Georges J, Gallacher J and Sudlow C. (2021). Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project. Health Expectations. 24(3):757-765. DOI: 10.1111/hex.13246

Eggink E, Hafdi M, Hoevenaar-Blom MP, Song M, Andrieu S (…/…) Birck C (…/…) Georges J et al. (2021). Prevention of dementia using mobile phone applications (PRODEMOS): protocol for an international randomised controlled trial. BMJ Open. 11(6): e049762. DOI: 10.1136/bmjopen-2021-049762

Faulkner S, Sayuri SL, Pakarinen C, Somers F, Edo MJV (…/…) Diaz-Ponce A, Gove D et al. (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. 24(2):601-616. DOI: 10.1111/hex.13207

Faulkner SD, Pittens CACM, Goedhart NS, Davies EH, Manning E, Diaz-Ponce A et al. (2021). Optimising Multi-stakeholder Practices in Patient Engagement: A Gap Analysis to Enable Focused Evolution of Patient Engagement in the Development and Lifecycle Management of Medicines. Therapeutic Innovation & Regulatory Science55(6): 1165-1179. DOI: 10.1007/s43441-021-00313-9

Frederiksen KS, Nielsen TR, Winblad B, Schmidt R, Kramberger MG (.../...) Georges J et al. (2021). 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. 28(7): 2147–2155. DOI: 10.1111/ene.14668

Gove D, Diaz A and Georges J (2021). Diagnosis and Support of Patients with Dementia: A Patient Perspective on Current Goals and Practice. DOI: 10.1007/978-3-030-77904-7_2

Gove D, Nielsen TR, Smits C, Plejert C, Rauf MA (…/…) Georges J et al. (2021). The challenges of achieving timely diagnosis and culturally appropriate care of people with dementia from minority ethnic groups in Europe. Int J Geriatr Psychiatry. 36(12): 1823-1828. DOI: 10.1002/gps.5614

Mank A, Maurik IS, Bakker ED, Glind EMM, Jönsson L (.../...) Diaz A, Gove D et al. (2021). Identifying relevant outcomes in the progression of Alzheimer’s disease; what do patients and care partners want to know about prognosis? Alzheimer’s & Dementia: Translational Research & Clinical Interventions7(1): e12189. DOI: 10.1002/trc2.12189

Mank A, van Maurik IS, Bakker ED, van de Glind, Jönsson L (…/…) Diaz A, Gove D et al. (2021). Prognosis of Alzheimer’s disease; what do patients and care partners want to know? Alzheimer’s & Dementia. 20;7(1): e12189. DOI: 10.1002/trc2.12189

Toniolo S, Scarioni M, Di Lorenzo F, Hort J, Georges J et al. (2021). Dementia and COVID-19, a Bidirectional Liaison: Risk Factors, Biomarkers, and Optimal Health Care. Journal of Alzheimer’s Disease. 82(3): 883-898. DOI: 10.3233/JAD-210335

Vat LE, Finlay T, Robinson P, Barbareschi G, Boudes M, Diaz Ponce A et al. (2021). Evaluation of patient engagement in medicine development: A multi-stakeholder framework with metrics. Health Expectations. 24(2): 491-506 DOI: 10.1111/hex.13191

Visser LNC, Minguillon C, Sánchez-Benavides G, Abramowicz M, Altomare D (…/…) Georges J et al. (2021). Dementia risk communication. A user manual for Brain Health Services—part 3 of 6. Alz Res Therapy. 13(1): 170. DOI: 10.1186/s13195-021-00840-5

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. 77(4): 1992-2001 DOI: 10.1111/jan.14787

 

2020


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

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). European Dementia Monitor 2020 - Comparing and benchmarking national dementia strategies and policies. ISBN 978-2-9199578-6-6, 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

Boada M, Winblad B, Jessen F, Jelle Visser PJ (.../...) 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

Clarke C, Woods B, Moniz-Cook E, Mountain G (…/...) Diaz A, Gove D et al. (2020). Measuring the well-being of people with dementia: a conceptual scoping review. Health and Quality of Life Outcomes. 24;18(1): 249. DOI: 10.1186/s12955-020-01440-x

Frederiksen KS, Cooper C, Frisoni GB, Frölich L, Georges J et al. (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

Frederiksen KS, Nielsen TR, Winblad B, Schmidt R, Kramberger MG (…/…) Georges J et al. (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. 28(7):2147-2155. DOI: 10.1111/ene.14668

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

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. 5;11: 582207. DOI: 10.3389/fpsyt.2020.582207

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

Sannemann L, Müller T, Waterink L, Zwan MD, Wimo A (.../...) Georges J (…/…) and the MOPEAD consortium. (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. 23;13(1): e12130. DOI: 10.1002/alz.040357

Solomon A, Kivipelto M, Ngandu T, Mangialasche F, Hartmann T (.../...) 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

Vat LE, Finlay T, Schuitmaker-Warnaar TJ, Fahy N, Robinson P (…/…) 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

 

2019


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

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

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. 3;9(3):e026468. DOI: 10.1136/bmjopen-2018-026468

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

Krolak-Salmon P, Maillet A, Vanacore N, Selbaek G (.../...) Georges J et al. (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

Rodríguez-Gómez O, Rodrigo A, Iradier F, Santos-Santos MA, Hundemer H (…/…) 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. Alzheimers Dementia. 15(6): 828-839. DOI: 10.1016/j.jalz.2019.02.003

Wagg A, Gove D, Leichsenring K and Ostaszkiewicz J. (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

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

 

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

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

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

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

Thorogood A, Mäki-Petäjä-Leinonen A, Brodaty H, Dalpé G, Gastmanns C (…/…) 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

 

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

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

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

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

 

2016



Alzheimer Europe (2016). Dementia in Europe Yearbook 2016: Decision making and legal capacity in dementiaISBN 978-99959-863-8-4, Luxembourg, Alzheimer Europe

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

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

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

Meiland F, Innes A, Mountain G, Robinson L, van der Roest H (…/…) 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. 16;4(1): e1. DOI: 10.2196/rehab.6376

Van der Steen JT, Radbruch L, de Boer ME, Jünger S, Hughes JC (…/…) 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