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P4 Ethical issues linked to dementia research

Detailed programme and abstracts

P4.1. On the personal utility of Alzheimer’s disease-related biomarker testing in research


Research groups across Europe are investigating new (combinations of) drugs in secondary prevention studies for Alzheimer’s dementia (AD). Secondary prevention studies require research participants who are healthy and asymptomatic, while undergoing pathophysiological changes associated with AD and thus testing positive for AD biomarkers. Research groups are currently grappling with the ethical dilemma whether or not to disclose AD-related individual research results to research participants. When healthy volunteers are offered test results indicating an increased - but uncertain - risk of a disease that is feared by many, the potential for psychological harm is apparent. Given the current absence of effective therapeutic options, this harm cannot be outweighed by anymedicalbenefits. It is unclear whether AD risk disclosure entails other, non-medical benefits that can outweigh potential harms. These benefits are often referred to as ‘personal utility’. Studies have shown, for instance, that people are interested in genetic susceptibility testing for AD (i.e. the APOE gene) for a variety of non-medical reasons, ranging from arranging one’s financial affairs or advance care planning to preparing one’s family members or making altruistic contributions to scientific research. It has been suggested that ‘personal utility’ can serve as a justification for routine risk disclosure of AD risk in research. But is there personal utility in AD biomarker information? Elsewhere, we have argued that personal utility should be stringently defined: a biomarker test has personal utility if and only if it can reasonably be used for decisions, actions or self-understanding which are personal in nature. Personal utility therefore presupposes clinical validity: the ability of the test to discriminate reliably between individuals who will and individuals who will not develop the disease. In this presentation, we will discuss to what extent AD biomarkers have personal utility for research participants, and whether they should be disclosed.  

P4.2. A human rights based approach to dementia research

ROCK Bernadette

“My journey shows that people with dementia are more than just a condition; they are citizens who want active lives and have fundamental needs”, Helen Rochford-Brennan, European Working Group of People With Dementia.

Indeed, as Kitwood (1997) states, “all persons have fundamental needs for love, inclusion, attachment, comfort, identity and occupation, which it could be argued, become more critical with dementia”.

In April 2016, The Alzheimer Society of Ireland (ASI) and the Irish Dementia Working Group published a Charter of Rights for People with Dementia, calling for greater participation, accountability, equality, empowerment, and legal recognition for the rights of people with dementia. The Charter adopts the principles of PANEL, which refer toParticipation,Accountability,Non-Discrimination andEquality,Empowerment andLegality.

Significantly, the ASI strives to encompass and impart these rights and principles in its research on people with dementia. The ASI carries out research into key areas that can influence and improve the quality of life of people with dementia and carers and receives a high volume of research requests. The ASI’s Research Review Committee approaches research and ethical issues using the human rights based approach ofPanel. Panel provides a framework with important elements to keep in mind if we want to promote respect for the rights of people with dementia in research.

This presentation explores the process by which the ASI addresses ethical issues in research using a human rights Panel approach. It explains how approaching ethical issues through a human rights lens helps ensure that the rights of people with dementia in research are put at the very center of research and that those with dementia are empowered to be as involved as possible in research.

P4.3. Dilemmas of predictive dementia diagnostics: German stakeholder conference for improving ethics competence in the healthcare professions


Research into new methods to predict dementia using biomarkers may soon make it possible to cheaply test one’s likelihood of contracting one of the major forms of dementia. To address the new ethical dilemmas and legal problems this entails, the University Medical Center Göttingen and the IEGUS Institute (Berlin) are launching a national social discourse entitled „Dilemmas of Predictive Dementia Diagnostics “in the fall of 2017, funded by German Federal Ministry of Education and Research. Our conference paper will explain the scientific issues motivating the project as well as its goals, anticipated participants, and methods.

The project will bring Germany’s central stakeholders together to specify anticipated problem areas arising in the field of predictive biomarker dementia diagnostics. Relevant issues lie in a) the ethics of the caregiving professions, b) medical law, and c) social ethics. Participants will seek consensus on common criteria for future national guidelines on public communication, patient counseling, and public policy.

The project is addressed primarily to healthcare professionals and life science researchers because they bear the responsibility for public communication and individual counseling about the advantages and risks of dementia prediction. Preparing these individuals will help ensure greater clarity for patients and their families in patient education, patient consent, living wills, and participation in dementia research.

An additional goal of the project is to secure meaningful input from students. To do so, the project will first bring together national experts to formulate criteria for communication and counseling guidelines in draft form in a stakeholder conference. Then, students will put these guidelines to the test in principle-oriented, case-based discussions, suggesting changes based on their experiences. All inputs flow into a final criteria set and in educational tools. The project will end in August, 2019 with a public presentation for a national and international audience.

P4.4. Obtaining input on clinical trials from persons with progressive memory loss and their concerned loved ones:  results of a pilot study


Background: Patient and caregiver perspectives are valuable when planning clinical protocols.  In a pilot study, we conducted a structured dialogue with participant and care-partner dyads, similar to those who were eligible to be screened for a clinical trial of an investigational medication for prodromal Alzheimer’s disease (AD).

Methods: Dialogue participants enrolled in pairs (a person with progressive memory loss and their concerned loved one).  All participants provided informed consent.  The 1-day dialogue was performed in 2 parts.  First, 2 parallel sessions were held, 1 among the persons with memory loss, and the other among their concerned loved ones; both sessions used the same moderator guide.  Subsequently, 1 session was conducted with all participants together.  Participants were asked about their experiences with memory loss and related health-care interactions, their knowledge about cognitive impairment and clinical research, their thoughts on effective means to recruit and retain enrollees in a clinical trial, and their insights on possibly receiving a diagnosis of prodromal AD during a trial.

Results: Five pairs of participants took part in the dialogue:  3 parents/children, and 2 couples.  Participants described many struggles with memory loss but had limited knowledge of cognitive impairment, and reported receiving very little helpful information from health-care providers.  Participants had positive perceptions but limited knowledge of clinical research, and wanted to be educated.  Participants were very receptive to enrolling as pairs in a clinical trial, cited several factors that could facilitate recruitment and retention, and did not view the prospect of receiving a diagnosis of prodromal Alzheimer’s disease as a deterrent.  Participants expressed themselves differently in the sessions with vs. without their partner.

Conclusion: This small pilot study shows that input from persons with memory loss and their concerned loved ones can provide actionable information to improve the conduct of early AD clinical trials.

P4.5. Mobility of people with dementia in public space – ethical aspects of participatory research

REITINGER Elisabeth, PICHLER Barbara, KNOLL Bente, EGGER Barbara, HOFMEISTER Birgit

Background: Around 130,000 people with dementia are currently living in Austria. Persons with dementia and their relatives undergo a progressive process of withdrawing from various social activities, which is accompanied by a reduction of their mobility in public space. However, mobility is a core factor influencing social participation of people with dementia.

Little is known of how people with dementia experience accessibility in public space in Austria. While a number of technical support systems have been developed, usability studies in collaboration with people with dementia are missing yet.

Learning about everyday life experiences of mobility in public space of people with dementia and the use of public transport and technical support systems need a participatory research approach. Ethical questions therefore have to be considered throughout the whole research process.

Aims: To contribute to a broader knowledge base of mobility in public space of people with dementia the study aims at 1) talking with people with early dementia about their experiences and discover factors that promote or hinder the mobility in public areas 2) conducting client-centered usability studies with already existing technical support systems focusing on public transport 3) formulating of recommendations for relevant stakeholders.

Methods and ethical questions: Based on a qualitative case study approach, the research project uses narrative interviews (25), focus groups (3) and participant observation. Ethical questions deal with “care ethics” as well as with “principle ethics” and include coping with vulnerability, emotions within research and relational autonomy.

Results and Discussion: Especially within early phases of dementia, diagnosis can have effects of stigma and shame. This has to be dealt with respect. Questions of informed consent have to be taken. Doing research with participation of people with dementia requires highly sensitive and reflexive research processes. Person-centered communication as well as emotional awareness support a relational approach.

The project is funded by the Austrian Research Promoting Agency (FFG) with resources by the Austrian Ministry for Transport, Innovation and Technology (BMVIT) Project duration Sept.2016-Dec.2018

P4.6. A national consultation about social research and innovation on dementia

CHAIZE Léa, SIMZAC Anne-Bérénice

In January 2017, Foundation Médéric Alzheimer (Paris) launched a large national consultation on Internet for questioning citizens about social research and innovation in order to take up the challenge of dementia. This national consultation was dedicated to people concerned by dementia in many ways: people living with dementia, researchers, professionals, care partners, stakeholders and all citizens concerned by dementia.  The consultation questions concern the difficulties encountered and possible solutions to prevent the loss of autonomy, understand their effects and improve the quality of life of people with dementia and their carers. Data allowed us to gather insight from people directly concerned by dementia who were able to share their experience, knowledge and inventiveness. One thousand people answered this national consultation and there were 850 usable responses (including 60 % care professionals, 24 % caregivers, 11 % research workers and fourteen people with dementia responded), from which emerged major themes for studies and experimentations, as well as possible ways to conduct these studies.

76 % of respondents find difficult to assess the impact of dementia care. 85 % find difficult to deploy on a large-scale evidence-based responses and knowledge. 93 % of care professionals think they are not associated enough to research on cognitive aging. 83 % of care professionals think that solutions they found are not studied enough by researchers. A majority of respondents believe that the researchers and professionals carers have to work together. They have to join efforts and to strengthen synergies between research and social innovation.

To conclude, consultation recognize efforts already made. However, respondents want to do more and declare social research and innovation on dementia as a national priority. They would like to have sufficient human and financial resources and to change the perception of dementia in our society. They want to strengthen goodwill and respect for people with dementia. Largely, researchers, professionals, people living with dementia, care partners and stakeholders have to build together a dementia-friendly society.



Last Updated: Monday 23 October 2017


  • Acknowledgements

    The 27th AE Conference in Berlin received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Deutsche Alzheimer Gesellschaft e.V. gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche