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Parallel Session P11 - Rights and ethics

Detailed Programme and abstracts

Saturday, 2 October – 11.00-12.00 (Yellow Room)

P11.1. Perceived Rights and Stigmatization of People with Alzheimer’s Disease

Elisabeth Bourkel1, Dieter Ferring2, Germain Weber3

1 Integrative Research Unit: Social and Individual Development, University of Luxembourg, Route de Diekirch, L-7220 Walferdange, Luxembourg,

2 Integrative Research Unit: Social and Individual Development, University of Luxembourg, Route de Diekirch, L-7220 Walferdange, Luxembourg,

3 Department of Clinical, Biological and Differential Psychology, Faculty of Psychology, University of Vienna, Liebiggasse 5, 1010 Vienna, Austria,

The estimation of the autonomy and the competencies of a person with Alzheimer’s disease (AD) is a complicated process, which may sometimes rely on socially shared stereotypes of this disease and may thus lead to the stigmatization of people with AD. This becomes especially evident when it comes to rights and responsibilities of persons with AD given that there is no clear-cut definition of these. The aim of the empirical study presented here was to examine perceived rights of people with AD and their relation with indicators of stigmatization. This was analyzed in a sample of laypersons (n=72) and a sample of health professionals working with persons with AD (n=113). In particular, the study questionnaire presented a vignette describing in one version a female and in the other version a male person at an early stage of AD followed by a list of 26 rights which had to be rated with respect to the target person on a 5 point Likert-scale. The list showed a factorial structure differing between five domains of perceived rights, namely “right of privacy and information”, right of autonomous living”, “citizen rights”, “right of self-determination and self-responsibility”, and “decision making by significant others”. Moreover, k=16 emotions towards the target person were analysed as indicators of social distancing. In subsequent steps of analyses, we tested if rights were differently perceived depending on (a) target person’s gender, (b) professional contact with persons with AD and (c) perceived social distancing.

Results showed that the rate of agreement to the five identified domains rights was in general quite high across groups; furthermore, participants expressed a low level of social distancing and high pro-social emotional reactions towards persons with AD. Professionals accorded more rights to people with AD than laypersons, showed less social distancing and less pro-social and unpleasant emotions towards the target person. Social distance was higher towards the male target person who elicited more unpleasant emotional reactions and was rated more dangerous than a woman with AD. Findings are discussed with respect to the necessity of creating and developing a culture concerning the rights to be accorded to persons affected with AD.

P11.2. Are people with dementia equal in Finnish social security system?

Henna Nikumaa, District Supervisor, Luotsikatu 4 E, 00160 Helsinki - Alzheimer Society of Finland, Finland,

Finnish public social security system is built to support people with challenges in their lives. There are many different services, benefits, allowances and other means of social care in this extensive system. It is a system that is very complicated and difficult to master even for professionals. People with dementia have special needs and it is self-evident that they will need support from social security system as their disease progresses.

Methods: Henna Nikumaa made a large study as a part of her social service master´s degree. In her study, 157 professionals who work with people with dementia (e.g. memory nurses, dementia coordinators, social workers) were interviewed using a questionnaire. Eight people with dementia and some of their family members were interviewed individually. The primary aim of the study was to clarify how and if equality is achieved in the availability of public social security when people with dementia and people with other challenges are compared.

Results: The results of this study showed that there are certain social security services that are not equally available for every diagnostic group. Especially rehabilitation and transportation services are easier to get for people with other diagnosis than for people with diseases that cause dementia. Both professionals and people with dementia experienced the availability in the same way. When asked for the reasons for this, the answers divided. Firstly, the professionals estimated that the social security legislation is interpreted mostly through the applicant’s physical ability. Especially when social security decisions are based on the Services and Assistance for the Disabled Act, people are evaluated almost entirely based on their physical ability. Their cognitive ability is not taken into consideration sufficiently even though cognitive impairment causes need for social security as well as physical impairment. This leads to a situation where people with visible condition get the social security services they need easier and often with less paper work than people with dementia. Secondly, people with dementia felt that diseases causing dementia and other diseases are not equally valued – other diagnoses are grounds for services, but diseases causing dementia are not. Dementia is still too often considered a part of normal aging. One interviewed person with dementia said: “It is almost like if you had any other disease than my Alzheimer’s, you’ll get the social security you need.”

Conclusions: In Finland people with dementia are not completely equal in the availability of public social security. Finnish social security legislation is interpreted too narrowly trough a person’s physical ability. When making social security decisions dementia is not seen as caused by neurological disease, but as a part of normal aging. People with dementia feel they are considered unworthy of services given to people with physical disabilities.

P11.3. Management perspective of a European research project: ethical committee’s approval and fair authorship allocation

Astrid Schmitz, Anna Renom, Gabriele Meyer, RTPC Consortium

Institute of Nursing Science, University of Witten/Herdecke, Witten, Germany (;;

Study description: RightTimePlaceCare (RTPC) project is funded by the European Community’s 7th Framework Programme (grant agreement number: HEALTH-F3-2010-242153; The project started in January 2010 and will last 42 months. The RTPC Consortium consists of eight European countries: Germany (University of Witten/Herdecke, UHW), The Netherlands (Maastricht University), Sweden (Lund University), UK (University of Manchester), Finland (University of Turku), Spain (Fundació Privada Clinic per la Recerca Biomedica), Estonia (University of Tartu), and France (Gerontôpole, University of Toulouse). The study comprises six work packages: Management of the Consortium (WP1), description of long term care and intersectoral communication (WP2), survey on long term care (WP3), economic evaluation (WP4), best practice strategies (WP5) and dissemination (WP6). The project management is up to the UWH.

Evaluation of European research collaboration: Project Management should guarantee transparency and fairness. Major management tasks should be evaluated to draw conclusions for further multinational studies. From the management perspective, the evaluation of national research ethics committees’ votes has been identified as a research objective. Former publications suggest different requirements of national ethics committees, thus, leading to variation in ethical approval. Different ethical committee policies might even affect the study results (e.g. more or less strict regulations might lead to different success in recruitment). In RTPC, a study protocol applicable to all countries of the Consortium has been developed for the clinical survey within the study. Ethical issues dealing with approaching people with dementia, informed consent obtainment, and potential dissent are integral part of the protocol. Ethical approvals of all Consortium members will be collected for comparative analysis. Another challenging management task is policy finding for sharing of publications in multinational Consortia. Authorship rules could be a powerful tool to enhance fair publishing. More or less complex guidelines have been internationally published. Few of them are evaluated in terms of feasibility and acceptability. We performed a systematic literature search and developed an extensive proposal on authorship rules comprising a general publication strategy, a definition of authorship, fair and transparent authorship allocation, clear responsibilities for (co-)authors and strategies for solving disputes. Practical usability of the approved rules (currently consensus finding process) will be systematically explored by analysing the application to national-levelled and international-levelled publications and congress contributions.

Expected results: Approved and evaluated authorship rules will be provided as they may be applicable to other small-scale EU research projects in the field of dementia or other health issue’s research. The evaluation of ethical approvals will provide further valuable perceptions regarding ethical standards in the respective European countries. Increased homogenisation across Europe is desirable, both from an ethical and a research methodological perspective. First results will be presented.

P11.4. Dementia: autonomy and decision-making - principles into practice.

Jan Killeen, Director of Policy, Alzheimer Scotland, Scotland (UK),

This presentation explores with participants the findings and themes emerging from this human rights focused project funded by the Nuffield Foundation which addresses questions of how legally appointed proxies (family members and other non-professionals) can best be supported to uphold the rights of the person with dementia for whom they are acting. Fieldwork in the Nederlands, Berlin, Scotland and England has gathered the experiences of attorneys and guardians and the issues they face when making decisions about the health care, welfare and finances of someone with dementia. In addition to individual interviews and focus groups, the author examined the effectiveness of support systems for lay proxies in each country by holding seminars with key stakeholders. The project also includes the identification of effective models of support, including training and information giving in Australia, Canada, the US and other European countries where incapacity laws share a common set of principles to support and protect adults. The study sheds light on some fundamental issues which need to be addressed at a strategic level if family member guardians and attorneys are to be supported to make complex ethical decisions which affect the human rights of people with dementia. Outcomes from this practical project are to include a Good Practice Guide to Decision-making, a report for policy makers and the promotion of community based initiatives.



Last Updated: Wednesday 03 November 2010