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PL4. Changing perceptions

Detailed Programme, abstracts and presentations

PL4. Changing perceptions (Saturday, 6 October, 16.00–17.30, Europa 4)

PL4.1. Nothing about us without us – Promoting the involvement of people with dementia

Helga Rohra

In 2007, Helga Rohra received a diagnosis of dementia. In her presentation, she will share the impact this diagnosis had on her and those close to her.

As an active advocate for the rights of people with dementia, she will highlight her collaboration with her local Alzheimer’s association in Munich, the German Alzheimer’s Society, as well as her participation in European and International initiatives bringing together people with dementia from different countries. She will make a case for greater involvement of people with dementia at all levels and ask for their voices to be included in strategic and service planning, as well as for the definition of future research priorities.

Finally, she will share how advocacy and campaigning can improve the quality of life of people with dementia by giving new meaning and providing important opportunities to communicate, network and partner with other people with dementia around a common cause.

PL4.2. Technology and dementia – What are the ethical implications?

Cees M.P.M. Hertogh

In view of the anticipated increase in the number of people with dementia, much is expected of innovative technologies. First of all, it is envisaged that in the near future technology could enable people with dementia to retain their autonomy and independence – and thus will help postpone, or even prevent nursing home placement. Secondly, policy makers and care providers are investing in the promise of technology, especially with regard to surveillance and safe guarding, thereby potentially alleviating the workload and care burden of care professionals.

Although the ever-evolving possibilities and subsequent application of technology in dementia care are welcomed by many, they also give rise to ethical questions. These questions concern (amongst others) the purposes of technology (assistivetoor surveillanceofpeople with dementia), its role in the care-giving process, and its effects on individual freedom, privacy and dignity. Since these effects need careful balancing, great store is set by a scrupulous informed-consent procedure. However, application of the doctrine of informed consent in this context offers only a partial solution to the potential conflict between ethical values and does not take into account the increasing ubiquity of sophisticated (and not always visible) technology in our living environment. Hence, the fundamental ethical question is not whether we want/accept technology or not, but how we allow technology to shape our lives and the lives of people with dementia.

PL4.3. The European Dementia Ethics Network – Overview of statements on dementia research

Dianne Gove

In this presentation Dianne Gove will provide an overview of the ethical issues linked to dementia research and the related recommendations of Alzheimer Europe based on the work of a multidisciplinary team of experts with backgrounds in bioethics, neurology, pharmaceutical drug development, gerontology, medicine and psychology, as well as a person with dementia and two carers. This work was funded by the European Commission and the Fondation Médéric Alzheimer to whom Alzheimer Europe is very grateful. This was the second topic to be addressed within the framework of the European Dementia Ethics Network, the first being the ethical issues linked to the use of assistive technology.

Dianne will cover most of the major issues addressed by the working group and provide a few examples of recommendations made with regard to each. The main issues addressed were: involving people with dementia in research and protecting their well-being; informed consent; risk; benefit and burden; brain and tissue donation; the publication and dissemination of research results; and various issues specifically related to end-of-life care research and medical research (covering clinical trials, epidemiological research and genetic research).

PL4.4. Guardianship, patient advocacy and residential advocacy in the Austrian healthcare system

Helga Müller-Ebner

Patients who are capable of doing so, have the right to make their own medical decisions. Patients must consent to all forms of medical treatment. Patients must be informed of their rights and are entitled to an explanation and information on possible forms of treatment, as well as the risks involved. Information has to be given in a clear and considerate manner. Patients have the right to access their medical files. Depriving a person of his/her freedom or restricting his/her freedom in any way constitutes a crime.

However, persons who are suffering from a mental illness can be involuntarily interned in a psychiatric hospital or psychiatric ward if they represent a serious and considerable risk to their own life or health or that of other people. In this case, patient advocates have been granted the power of representation. A court decides whether the internment measures have been met or not. In nursing homes and similar institutions, measures which involve restricting the patients’ free movement have to be brought to the attention of the advocate for the residents (called residential advocate). If a person is unable to manage his/her medical decisions without risk or disadvantage, a trustee/guardian can be appointed by the court, if there is no less restrictive measure of protecting his/her interests. For strictly personal decisions, such as the right to bodily integrity and the choice of one’s place of living, a trustee can only decide on the person’s behalf if he/she is incapable of understanding or making a judgment.

The Federal Law of guardianship organisations, Patients Advocates and Residential Advocacy, is designed to provide the means to protect these rights and the dignity of patients who are involuntarily interned, incapable of consenting to medical treatment or have been assigned a guardian for other matters by court.

In these difficult situations, most of us have no idea how vulnerable we really are.






Last Updated: Thursday 15 November 2012