The German Ethics Council holds a public forum on dementia and self-determination

Yesterday (Wednesday) over three hundred members of the public came to the Hamburg Chamber of Trades for the German Ethics Council’s meeting on “Dementia – the end of self-determination?”

In her opening address, Angelika Kempfert, State Councillor in Hamburg’s Social Affairs, Family, Health and Consumer Protection Authority, thanked the Ethics Council for making the subject of dementia one of its principal issues of concern, and thus acknowledged the valuable contribution of the Ethics Council in ensuring that this severe disorder became a focus of public attention and debate.

The meeting’s moderator, Michael Wunder, a member of the Council, also laid stress on the relevance of the subject in present-day society. In his view, a particular requirement was a change of paradigm whereby the issue of dementia was discussed in terms of potentials rather than deficiencies and it was made clear that sufferers could and should live in the bosom of the community.

In her contribution, Ursula Lehr, Chair of BAGSO e. V., the Federal Association of Senior Citizens’ Organizations, outlined the challenges presented to the individual and society by the dementias in an ageing world: how to grow old while to the greatest possible extent retaining one’s faculties and health and for as long as possible remaining autonomous and independent, with a good quality of life, thus making for a dignified old age. To this end, particular importance attached to reinforcing the quality and availability of professional help, care and treatment, as well as to early diagnosis and prevention through physical, mental, intellectual and social activity.

According to Andreas Kruse, Director of Heidelberg University’s Department of Gerontology, three anthropological indicators facilitated a deeper understanding of a person’s quality of life and capacity for self-determination – namely, the ability to communicate, to act and to empathize. Even those in the advanced stages of dementia retained an –albeit limited – degree of self-determination and, given appropriate opportunities for communication and a suitable environment, could take responsibility for many aspects of their lives. In Professor Kruse’s view, the essential point was to recognize that emotional, social and communicative capabilities and the ability to cope with the practical demands of everyday life were resources to be drawn on. Every manifestation of autonomous activity and empathy should be exploited and positively reinforced, thus strengthening and making optimum use of the capacities of dementia sufferers.

Rolf-Dieter Hirsch, Medical Director of the Department of Geriatric Psychiatry at the Rheinische Landesklinik, Bonn, addressed the issue of research with dementia sufferers. Professor Hirsch observed that it was not yet possible to influence the course of every individual dementia on a long-term basis. For this reason research should be directed towards pathogenesis, treatment, rehabilitation and prevention. The speaker also advocated an integrated bio-psychosocial approach in which the dementias were seen in their individual diversity, as well as a research policy involving all the relevant academic disciplines.

Margot Lucke, a former consultant at the Medical Service for the Health Insurance Funds in Lower Saxony, focused on the deficiencies of home and inpatient care. Family members were often unable to cope with the demands of outpatient care. As for inpatient care, very few centres were capable of fully recognizing the particular needs of dementia sufferers and of adopting an appropriate approach to allow them to exercise self-determination. There was a dearth of suitable staff and family doctors with a knowledge of geriatrics and geriatric psychiatry. Furthermore, the documentation to be compiled under the care regulations in force took up more than 30 per cent of trained staff’s working time. Dr Lucke suggested that motivated pensioners should be encouraged to undertake more civil society volunteer work, that family doctors should receive more training in the diagnosis, therapy and care of dementia, and that an element of practical care of the condition should form an integral part of the training of medical practitioners.

The ensuing discussion, under the heading “We speak for ourselves!”, involved Peter Wissmann, head of the dementia support organization Demenz Support Stuttgart and Deputy Chair of Aktion Demenz e. V.; dementia sufferer and former translator Helga Rohra; and Christian Zimmermann, a former businessman now suffering from Alzheimer’s. Unlike most people diagnosed with dementia, who are reluctant to talk about their condition in public, Ms Rohra and Mr Zimmermann belong to the select group who are now prepared to “out themselves” aggressively, because they see dementia primarily as a social experience. Besides care professionals, family members and civil society volunteers, they would like to see sufferers themselves integrated, as a fourth group of actors, in the process of dealing with the dementias.

Otfried Höffe, Head of the Political Philosophy Research Unit at Tübingen University and President of the Swiss National Advisory Commission on Biomedical Ethics, chose “Ageing in dignity” as his subject. Looking at views of ageing throughout the course of history, he noted that the problem of ageing itself, reflection on ageing and the development of strategies to address the associated challenges were nothing new, but could already be identified in the pre-academic exploration of ageing in the ancient world. Professor Höffe presented quotations from Cicero, Voltaire, Jacob Grimm, Ernst Bloch and Hermann Hesse which showed that it was possible and indeed essential to learn how to age.

During the course of the meeting the audience were able to take part in the discussions by channelling questions through appointed spokespersons. Aspects of interest raised from the floor were utilization of family members’ expertise; coordination of the relevant medical specialities; training of care professionals; specialist medical care in care homes; continuing training of family doctors; and alternative forms of housing.

The Ethics Council will reflect on all the suggestions made and incorporate them in its forthcoming Opinion on the subject of dementia.

More information on the proceedings can be accessed (in German) here.