Background:
Person & Dementia Conference, 10. / 11. July 2014

Dementia, a collection of syndromes as defined in ICD-10, ranks among the most prominent impairments in older age. Considering the rising percentage of elderly people in society and the increasing probability of developing dementia at higher age it must be concluded that, at least in the industrialized countries, the proportion of people with dementia will grow significantly in the nearer future. It is expected that in Germany 1.8 million people will suffer from dementia in 2030, and more than 2.5 million people in 2050. For Europe estimations amount to 14 million in 2030 and 29 million in 2050, worldwide the numbers are 66 million in 2030 and 115 million in 2050, respectively. For affected persons dementia entails severe restrictions in their conduct of life and often grave suffering. Relatives and caregivers have to cope with considerable emotional as well as material pressures. Private and public healthcare systems, even in the case of suboptimal provisions, face tremendous financial challenges. Correspondingly, great efforts in medicine and the biosciences are being undertaken in order to develop diagnostic, preventive and therapeutic instruments that might help to detect dementia at early stages, to limit its impact or, possibly, to treat the symptoms. At present, however, no modifiable risk factors for dementia are known that can definitely preclude its incidence. Similarly, no measures are available that can halt or reverse the course of the disease. It has to be assumed, thus, that coping with dementia will constitute an increasing individual as well as societal challenge.

Medical and scientific progress alone will not suffice to face this challenge, at least not in the nearer future. Rather, at short notice this progress might even enforce the problem: First, general improvements in healthcare might lead to a further increase in life expectancy and thus raise the prevalence of dementia because of its age-correlation. Second, biomarker and neuroimaging research into dementia is presently at the point to yield strongly reliable predictive instruments. These instruments will make it possible to anticipate later onsets of dementia in people who have only mild cognitive impairments (MCI), subjective memory impairment, or are even completely symptom-free at present. Recommended preventive measures (e.g. physical activity) can at best modify the risk. However, as long as no conclusive measures of prevention or therapy are at hand, these anticipations will further urge people to cope with the disease (e.g. in advance directives and living wills) and thus Against this background, dementia must not be the exclusive object of medical and scientific research. Rather, it should be comprehended as a phenomenon requiring a comprehensive assessment, taking into account medical and scientific aspects, but also its philosophical and ethical dimensions, psychological appearances and social implications. Not least, medical care and scientific research in dementia themselves require a thorough investigation into their conceptual and normative foundations. Under the title “Person and Dementia” an interdisciplinary research network has faced this challenge.

The consortium consisted of four subprojects, located at different academic institutions in Bonn, Düsseldorf and Jülich. The thematic focuses of the subprojects – person, personhood and personal identity, patients and autonomy, informed consent in dementia research and perception and recognition of persons suffering from dementia – were closely linked. Subproject 1 has contributed philosophical foundations and provided the other subprojects with necessary conceptual backgrounds, integrating their specific inputs and modifying and revising the conceptual framework in the light of the empirical findings. Subprojects 2–4 were interdisciplinary in nature. Subproject 2 contained an empirical component in terms of qualitative information on patients’ use of advance directives. Subproject 3 contributed quantitative assessments of the cogency of informed consent procedures. Subproject 4, finally, investigated social perceptions of dementia in specific focus groups. In this way, the consortium was designed to integrate philosophical and empirical work in a close and reflected manner and thus to maximize synergetic effects between the disciplines involved.

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