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Privacy and Dementia

By Laura Hartmann-Wackers

Privacy has been a topic of discussion for quite some time now. Revelations about data retention, online tracking, and surveillance practices have heightened awareness of the erosion of private spaces, and the implementation of the GDPR has at least paid lip service to data protection.

However, there is one area that remains in the shadows, even though it is becoming increasingly relevant to more and more of us, and where the risk of privacy violations is particularly high: elder care. The often lamented 'care crisis' conjures up alarming images of inadequate care and neglect, which are already a reality and for which there are no adequate solutions yet. Increasing life expectancy and aging, large generational cohorts will only exacerbate this problem. Those who are especially affected are individuals who become vulnerable due to illnesses, as is the case with dementia. Dementia is a condition that already affects over 47 million people worldwide, and its numbers will continue to rise. To enable them to have a good and largely self-determined life, good care is essential. But where do the boundaries lie between proper care and harmful surveillance? Between attentiveness and control? Loneliness and self-determination?

In my dissertation project, I explore these and other questions by discussing how privacy can be conceptualized under conditions of illnesses such as dementia. I argue that privacy must be protected, even - or especially - in situations of dependency, such as caregiving, illness, and vulnerability. The aim is to develop a concept that meets the theoretical requirements of a consistent definition of privacy and can also be applied in practice. The project seeks to provide a starting point for how people with and without dementia can be protected from unauthorized intrusions into their privacy in caregiving situations.

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