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Alzheimers Dement. 2019 Jun;15(6):828-839. doi: 10.1016/j.jalz.2019.02.003. Epub 2019 May 7.

The MOPEAD project: Advancing patient engagement for the detection of "hidden" undiagnosed cases of Alzheimer's disease in the community.

Author information

1
Research Center and Memory Clinic, Fundació ACE, Institut Català de Neurociències Aplicades - Universitat Internacional de Catalunya, Barcelona, Spain; Networking Research Center on Neurodegenerative Diseases (CIBERNED), Instituto de Salud Carlos III, Barcelona, Spain. Electronic address: orodriguez@fundacioace.org.
2
GMV SECURE E SOLUTIONS, Valencia, Spain.
3
Eli Lilly and Company (Lilly España), Alcobendas, Spain.
4
Research Center and Memory Clinic, Fundació ACE, Institut Català de Neurociències Aplicades - Universitat Internacional de Catalunya, Barcelona, Spain.
5
Eli Lilly and Company (Lilly Deutschland GmbH), Bad Homburg, Germany.
6
Vall d'Hebron Research Institute (VHIR) and CIBERDEM (ISCIII), Barcelona, Spain.
7
Department of Psychiatry, University of Cologne, Cologne, Germany.
8
Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, Amsterdam, the Netherlands.
9
Modus Research and Innovation Limited, Dundee, Scotland.
10
Division of Neurogeriatrics, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
11
Center for Cognitive Impairments, Department of Neurology, University Medical Center Ljubljana, Ljubljana, Slovenia.
12
Research Center and Memory Clinic, Fundació ACE, Institut Català de Neurociències Aplicades - Universitat Internacional de Catalunya, Barcelona, Spain; Networking Research Center on Neurodegenerative Diseases (CIBERNED), Instituto de Salud Carlos III, Barcelona, Spain.
13
Alzheimer Europe, Luxembourg.
14
Division of Clinical Geriatrics, Centre for Alzheimer Research, Department of Neurobiology, Care Sciences, and Society, Karolinska Institutet, Stockholm, Sweden; Institute of Clinical Medicine/Neurology, University of Eastern Finland, Kuopio, Finland.
15
Eli Lilly and Company, Indianapolis, IN, USA.
16
Division of Clinical Geriatrics, Centre for Alzheimer Research, Department of Neurobiology, Care Sciences, and Society, Karolinska Institutet, Stockholm, Sweden.
17
Division of Clinical Geriatrics, Centre for Alzheimer Research, Department of Neurobiology, Care Sciences, and Society, Karolinska Institutet, Stockholm, Sweden; Department of Neuroimaging, Centre for Neuroimaging Sciences, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, UK.
18
Eli Lilly and Company (Lilly UK), Surrey, UK.
19
European Institute of Womenś Health, Dublin, Ireland.
20
Združenje Spominčica, Ljubljana, Slovenia.
21
Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, Amsterdam, the Netherlands; Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Maastricht University, Maastricht, the Netherlands.
22
ASDM Consulting, Brussels, Belgium.
23
Department of Psychiatry, University of Cologne, Cologne, Germany; German Center for Neurodegenerative Diseases (DZNE), Bonn, Germany.
24
Division of Neurogeriatrics, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden; Karolinska Univ Hospital, Theme Aging, Stockholm, Sweden.
25
AstraZeneca, Waltham, MA, USA.
26
Eli Lilly and Company, Firenze, Italy.

Abstract

In most, if not all health systems, dementia is underdiagnosed, and when diagnosis occurs, it is typically at a relatively late stage in the disease process despite mounting evidence showing that a timely diagnosis would result in numerous benefits for patients, families, and society. Moving toward earlier diagnoses in Alzheimer's disease (AD) requires a conscientious and collective effort to implement a global strategy addressing the multiple causes hindering patient engagement at different levels of society. This article describes the design of the Models of Patient Engagement for Alzheimer's Disease project, an ongoing EU-funded public-private multinational initiative that will compare four innovative patient engagement strategies across five European countries regarding their ability to identify individuals with prodromal AD and mild AD dementia, which are "hidden" in their communities and traditionally not found in the typical memory clinic setting. The strategies include an online AD citizen science platform, an open house initiative at the memory clinics, and patient engagement at primary care and diabetologist clinics.

KEYWORDS:

Alzheimer's disease; Citizen science; Diagnostic gap; Early diagnosis; Patient engagement; Population-based screening

PMID:
31076376
DOI:
10.1016/j.jalz.2019.02.003
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