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Dementia Diagnostic between Cure and Care Policies Practices and ethical issues in the Swiss cantons

English title Dementia Diagnostic between Cure and Care Policies and ethical issues in the Swiss cantons
Applicant Lucas Barbara
Number 167399
Funding scheme NRP 74 Smarter Health Care
Research institution Haute école de travail social HES-SO
Institution of higher education University of Applied Sciences and Arts Western Switzerland - HES-SO
Main discipline Political science
Start/End 01.10.2017 - 30.06.2021
Approved amount 503'919.00
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All Disciplines (4)

Discipline
Political science
Health
Sociology
Social work

Keywords (6)

local health policy; swiss cantons; profesional ethic; dementia care; dementia diagnosis; care policy

Lay Summary (French)

Lead
Le diagnostic des démences soulève des questions politiques et génère des dilemmes éthiques. Cette étude vise à identifier les différentes conceptions et pratiques cantonales en la matière, ainsi que les enjeux éthiques associés au diagnostic précoce.
Lay summary

Contenu et objectifs du travail de recherche

La Stratégie nationale en matière de démence 2014–2017 met l’accent sur le diagnostic précoce et le soutien aux personnes diagnostiquées et à leurs proches. Responsables de la mise en œuvre de cette stratégie, les cantons ont adopté des approches différentes, à l’articulation de la santé et du social. Cette étude vise à dresser un panorama de la mise en œuvre du diagnostic des démences par les cantons suisses et à clarifier les liens entre les contextes sociopolitiques et les enjeux éthiques associés au diagnostic précoce.

Dans un premier temps, nous comparerons l’organisation et la régulation du diagnostic des démences dans les 26 cantons. Dans un deuxième temps, une analyse approfondie des conceptions et des pratiques en matière de diagnostic précoce sera menée dans trois à quatre cantons représentatifs de la diversité des politiques cantonales. Enfin, nous mènerons des groupes de discussion sur les dilemmes éthiques rencontrés lors du diagnostic précoce des démences. Ces groupes réuniront des professionnel.e.s, des proches et enfin des patient.e.s.

Contexte scientifique et sociétal du projet de recherche

L’étude intègre des concepts et méthodes issues de l’analyse des politiques publiques, de la sociologie politique et de l’éthique biomédicale. Sur la base des pratiques et conceptions du diagnostic des démences en vigueur dans les cantons, elle fournira des connaissances utiles aux décideurs et aux professionnel.e.s et contribuera à clarifier le débat sur les enjeux politiques et éthiques du diagnostic précoce des démences.

Direct link to Lay Summary Last update: 19.09.2017

Responsible applicant and co-applicants

Employees

Project partner

Collaboration

Group / person Country
Types of collaboration
Lise/CNAM, CNRS France (Europe)
- in-depth/constructive exchanges on approaches, methods or results
Espace Ethique, Ile de France France (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
Old Tension, Emerging Paradoxes in Health: Rights, Knowledge and Trust. (Biennial Conference of the European Society for Health and Medical Sociology) Talk given at a conference PhD project presentation 06.06.2018 Lisbonne, Portugal Gurau Ana;
European Space of Financialisation (Global Seminar of the FinGeo Network of Financial Geography) Talk given at a conference PhD project presentation 28.05.2018 Vrije Universiteit, Bruxelles, Belgium Gurau Ana;
Health and Illness in Neoliberal Era (European Sociological Association and Italian Association of Sociology) Talk given at a conference PhD project presentation 18.04.2018 Turin, Italy Gurau Ana;
Wennberg International Collaborative Spring Policy Meeting Talk given at a conference La démence entre politique de santé et politique sociale. La question du diagnostic précoce 12.04.2018 Zürich, Switzerland Sgier Lea;
Société Suisse d'éthique biomédicale Talk given at a conference Le diagnostic de la démence. Politiques cantonales et enjeux éthiques13. 23.11.2017 Bigorio, Switzerland Gurau Ana;


Knowledge transfer events

Active participation

Title Type of contribution Date Place Persons involved
National Dementia Strategy Meeting - Federal Office for Public Health Talk 16.03.2018 Berne, Switzerland Hurst-Majno Samia; Lucas Barbara; Sgier Lea;


Abstract

Dementia in its various forms is a key challenge for health and social policy in the developed world, with numbers of patients forecast to grow exponentially in the coming 30 years. Switzerland has reacted to this challenge by elaborating a National Dementia Strategy (2014) which, in accordance with an international consensus, promotes early diagnosis and post-diagnostic support as a means for both cost containment and enhancement of patients’ autonomy. However, health and social affairs being cantonal competencies in the Swiss federal system, different cantons have taken very different paths with respect to early diagnosis.This project proposes to undertake the first systematic study of dementia policy at the cantonal level in Switzerland, with a focus on the controversial issue of early diagnosis and related ethical dilemmas (such as the relevance of pre-symptomatic diagnosis, disclosure of the diagnosis, patient autonomy and competence). It aims to understand how different cantons formulate and implement early diagnosis policy, how different policy models affect related key ethical dilemmas, and how these dilemmas are handled by professionals, patients and family carers. Our general hypothesis is that the answer given to those ethical dilemmas varies as a function of socio-political and institutional contexts of implementation, more particularly in terms of the articulations of the cure/care divide. This study aims to reach a comprehensive and systematic understanding of cantonal early diagnosis policies. Methodologically, it builds on a three-step research design combining a systematic inventory of cantonal early diagnosis policies and contexts of implementation, 3-4 in-depth case studies of cantonal policies, and focus groups with key actors and beneficiaries of dementia policy networks (professionals, early-stage patients and carers). Theoretically, it draws on various strands of the policy literature (historical and discursive institutionalism, implementation literature, interpretive policy studies) and on the literature on social and medical ethics.This study will make two main contributions: an empirical contribution to the understanding of cantonal dementia policies in Switzerland that will lead to concrete policy recommendations; and a theoretical contribution to the understanding of the links between dementia policies, related ethical dilemmas, contexts of implementation and professional networks.
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