Dementia – the End of Self-Determination?

Currently, about one million people in Germany live with dementia and, according to forecasts, up to 1.7 million people could be affected by 2030. Dementia is not only a challenge for relatives, carers and medicine, but for society as a whole.

Self-determination is an essential part of a person’s self-conception and is a key point of reference in ethical discourse. For a long time, the focus was only on the deficits associated with dementia – with the consequence that many people perceived themselves to be subjected to inappropriate paternalism after being diagnosed with dementia. There was much speaking about them but rarely with them. However, there is an ethical imperative to approach the affected persons themselves and to respect their self-determination even when it is limited. There are now increasing efforts to focus on the abilities of people with dementia. The opportunities to better perceive their will and to support and respect them in their self-determination and ability to express themselves are being examined. This marks a shift in perspectives, which the German Ethics Council wants to further promote with its event.

The following questions will be discussed:

• Which perspectives are offered on dementia in the context of age or ageing research?
• How much self-determination is possible for people with dementia?
• What is needed in order to better assess the ability of people affected by dementia to exercise self-determination?
• What forms of care support the self-determination of those affected?

The photographic exhibition “Alzheimer – eine andere Welt” (“Alzheimer’s Disease – Another World”) by Claudia Thoelen is shown during the conference.