Valuing biomarker diagnostics for dementia care: enhancing the reflection of patients, their care-givers and members of the wider public

Simone Van Der Burg,Catharina J M Klijn,Marcel M Verbeek,Floris H B M Schreuder

doi:10.1007/s11019-018-09883-2

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.

Highlights

The rapidly aging population and the rising prevalence of dementia in society is causing many societal concerns, to which diverse academic fields seek an appropriate response (Winblad et al 2016)
Based on an exploration of the literature describing the societal value of diagnostics of dementia, we developed an interview guide to conduct interviews with project members and five patient-representatives: two members of the HCHWA-D patient organization who have an inheritable version of Cerebral Amyloid Angiopathy (CAA) which leads to early onset dementia or intracerebral hemorrhage (ICH), two from Alzheimer NL, and one patient who suffered a stroke from the Heart Foundation
This is the case in circumstances in which 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, (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 number of dementia patients

Summary

Introduction

The rapidly aging population and the rising prevalence of dementia in society is causing many societal concerns, to which diverse academic fields seek an appropriate response (Winblad et al 2016). There is debate about this question in the social sciences and in ethics Many scholars in these fields regard dementia biomarker research with reserve Others state that biomarker research presupposes that dementia is a disease with a biochemical source, while it could just as well be understood quite differently as a set of functional problems or part of normal aging (Moser 2008, 2011). It matters, according to these scholars, how dementia is understood, as these understandings invite different kinds of responses. The focus on finding a cure for dementia should not eclipse attention for more low tech ‘caring’ responses that dementia patients should be able to fall back on—and which represent, according to some, a much better strategy to deal with dementia (Cuijpers and Van Lente 2015)

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