Staff Publications

Staff Publications

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    'Staff publications' is the digital repository of Wageningen University & Research

    'Staff publications' contains references to publications authored by Wageningen University staff from 1976 onward.

    Publications authored by the staff of the Research Institutes are available from 1995 onwards.

    Full text documents are added when available. The database is updated daily and currently holds about 240,000 items, of which 72,000 in open access.

    We have a manual that explains all the features 

Record number 547692
Title Valuing biomarker diagnostics for dementia care: enhancing the reflection of patients, their care-givers and members of the wider public
Author(s) Burg, Simone van der; Schreuder, Floris H.B.M.; Klijn, Catharina J.M.; Verbeek, Marcel M.
Source Medicine, Health Care and Philosophy 22 (2019)3. - ISSN 1386-7423 - p. 439 - 451.
DOI https://doi.org/10.1007/s11019-018-09883-2
Department(s) Innovation- and Risk Management and Information Governance
Publication type Refereed Article in a scientific journal
Publication year 2019
Keyword(s) Care - Cure - Dementia - Early diagnostics - Ethics - Stakeholder discussion
Abstract

What is the value of an early (presymptomatic) diagnosis of dementia in the absence of effective treatment? There has been a lively scholarly debate over this question, but until now (future) patients have not played a large role in it. Our study supplements biomedical research into innovative diagnostics with an exlporation of its meanings and values according to (future) patients. Based on seven focusgroups with (future) patients and their care-givers, we conclude that stakeholders evaluate early diagnostics with respect to whether and how they expect it to empower their capacity to (self-) care. They value it, for instance, with respect to whether it (a) explains experienced complaints, (b) allows to start a process of psychological acceptance and social adaptation to the expected degeneration, (c) contributes to dealing with anxieties (with respect to inheritable versions of dementia), (d) informs adequately about when to start preparing for the end of life, (d) informs the planning of a request for euthanasia, or (e) allows society to deal with a growing amount of dementia patients. Our study suggests that information about disease is considered ‘harmful’ or ‘premature’ when recipients feel unable to act on that information in their (self-) care. The results of this research offers input to further ethical research. It invites to adopt a care perspective in evaluation and to seek ways to prevent the ‘harm’ that such diagnostic methods can bring about.

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