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A.N. Bogolepova

Pirogov Russian National Research Medical University;
Federal Center of Brain Research and Neurotechnologies of the Federal Medical Biological Agency

E.V. Brovko

Zdorovie Goroda LLC (Zdorovie.ru)

S.I. Gavrilova

Mental Health Research Centre

M.V. Gantman

Center for Neuroeconomics and Cognitive Research of the Institute of Cognitive Neuroscience of the National Research University «Higher School of Economics»;
Foundation for Dementia Patients and their family support «AlcRus»

R.O. Dreval

Non-commercial partnership Center of Social Economics

S.N. Illarioshkin

Research Center of Neurology

E.A. Katunina

Federal Center of Brain and Neurotechnologies;
Pirogov Russian National Research Medical University

C. Konson

The International Medical Cluster Foundation;
Division of Geriatrics in Ministry of Health Southern District

Yu.V. Kotovskaya

Russian Gerontological Research and Clinical Center

I.V. Litvinenko

Kirov Military Medical Academy

V.E. Medvedev

Peoples Friendship University of Russian

E.A. Mkhitaryan

Pirogov Russian National Research Medical University;
Russian Clinical and Research Center of Gerontology Pirogov — Russian National Research Medical University

N.G. Neznanov

Bekhterev National Medical Research Center for Psychiatry and Neurology;
Pavlov First Saint-Petersburg State Medical University

E.J. Onegina

Alekseev Mental-health Clinic No. 1

V.A. Parfenov

Sechenov First Moscow State Medical University

O.N. Tkacheva

Pirogov Russian National Research Medical University

E.Yu. Fedotova

Research Center of Neurology

A.L. Shchetkina

Foundation for Dementia Patients and their family support «AlcRus»

N.N. Yakhno

Sechenov First Moscow State Medical University

Journal: S.S. Korsakov Journal of Neurology and Psychiatry. 2022;122(7): 121–131

Roadmap for ecosystem-based approach for patients with Alzheimer disease in Russia: current needs, barriers, and possible solutions (resolution of the scientific and practical experts meeting)

Authors:

A.N. Bogolepova, E.V. Brovko, S.I. Gavrilova, M.V. Gantman, R.O. Dreval, S.N. Illarioshkin, E.A. Katunina, C. Konson, Yu.V. Kotovskaya, I.V. Litvinenko, V.E. Medvedev, E.A. Mkhitaryan, N.G. Neznanov, E.J. Onegina, V.A. Parfenov, O.N. Tkacheva, E.Yu. Fedotova, A.L. Shchetkina, N.N. Yakhno

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DOI: 10.17116/jnevro2022122071121

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Bogolepova AN, Brovko EV, Gavrilova SI, Gantman MV, Dreval RO, Illarioshkin SN, Katunina EA, Konson C, Kotovskaya YuV, Litvinenko IV, Medvedev VE, Mkhitaryan EA, Neznanov NG, Onegina EJ, Parfenov VA, Tkacheva ON, Fedotova EYu, Shchetkina AL, Yakhno NN. Roadmap for ecosystem-based approach for patients with Alzheimer disease in Russia: current needs, barriers, and possible solutions (resolution of the scientific and practical experts meeting). S.S. Korsakov Journal of Neurology and Psychiatry. 2022;122(7):121‑131. (In Russ., In Engl.).
https://doi.org/10.17116/jnevro2022122071121

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The care of a patient with Alzheimer’s disease (AD) is considered from the perspective of an ecosystem, that is, a systemic approach describing effective partnership, collaboration and research aimed at creating value, involving all participants in the AD patient journey. The effectiveness of this ecosystem is only possible with the involvement of all stakeholders in its development, including patients, healthcare professionals at all levels, government agencies, private companies, and patient organizations. The unmet health care and information needs of patients with AD are a consequence of barriers in the AD ecosystem. Key barriers for the patient include low awareness and stigmatization of the disease in society, lack of quality epidemiological data, difficulties in timely diagnosis, lack of prevention programs, unpreparedness of most physicians to conduct AD patient rehabilitation, and other factors. Based on the analysis of the ecosystem of AD and the patient pathway, 10 main directions (strategies) necessary for the formation of the ecosystem were identified: conducting research in the diagnosis and epidemiology of AD, creating and implementing a cognitive health program, forming a legal framework, raising public awareness, optimizing patient routing for timely diagnosis, organizing a network of memory clinics/laboratories, creating a register of patients with dementia, developing digital solutions and supporting social projects.

Keywords:

Alzheimer’s disease
ecosystem around the patient
needs
barriers
solutions
roadmap

Authors:

A.N. Bogolepova

Pirogov Russian National Research Medical University;
Federal Center of Brain Research and Neurotechnologies of the Federal Medical Biological Agency

E.V. Brovko

Zdorovie Goroda LLC (Zdorovie.ru)

S.I. Gavrilova

Mental Health Research Centre

M.V. Gantman

Center for Neuroeconomics and Cognitive Research of the Institute of Cognitive Neuroscience of the National Research University «Higher School of Economics»;
Foundation for Dementia Patients and their family support «AlcRus»

R.O. Dreval

Non-commercial partnership Center of Social Economics

S.N. Illarioshkin

Research Center of Neurology

E.A. Katunina

Federal Center of Brain and Neurotechnologies;
Pirogov Russian National Research Medical University

C. Konson

The International Medical Cluster Foundation;
Division of Geriatrics in Ministry of Health Southern District

Yu.V. Kotovskaya

Russian Gerontological Research and Clinical Center

I.V. Litvinenko

Kirov Military Medical Academy

V.E. Medvedev

Peoples Friendship University of Russian

E.A. Mkhitaryan

Pirogov Russian National Research Medical University;
Russian Clinical and Research Center of Gerontology Pirogov — Russian National Research Medical University

N.G. Neznanov

Bekhterev National Medical Research Center for Psychiatry and Neurology;
Pavlov First Saint-Petersburg State Medical University

E.J. Onegina

Alekseev Mental-health Clinic No. 1

V.A. Parfenov

Sechenov First Moscow State Medical University

O.N. Tkacheva

Pirogov Russian National Research Medical University

E.Yu. Fedotova

Research Center of Neurology

A.L. Shchetkina

Foundation for Dementia Patients and their family support «AlcRus»

N.N. Yakhno

Sechenov First Moscow State Medical University

Received:

10.06.2022

Accepted:

14.06.2022

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