Lili Dekker: Living with Dementia

two people walking hand in hand outside

I am currently in Rotterdam, the Netherlands, at my grandparents’ house, where I have been filming them since the 13th of July. With six days behind me, I have significantly more footage than I was expecting–I can’t quite tell yet whether this is a positive or a negative. As much as filmic variation offers possibility, the thought of sifting through footage upon footage come the editing process in three weeks does sound slightly intimidating. To find out, stay tuned for my second post! I should be a weeks underway with editing by then…
The first part of my filming process has been to document the daily lives of my “Oma” and “Opa” (see photos). This gives me some time to catch up with them, and to acquaint myself with their current lifestyle before. The second part, which I will begin shortly after the close of this first week, will involve interviews, to delve a little deeper into the specifics of their lives and the surrounding matters. Having spent approximately a week observing, I will be more equipped to pose relevant questions.

From my experiences thus far, I can confirm that the subject matter of my research is in flux. The prime focus of my research seems to have shifted away from Investigating Euthanasia and towards Living with Dementia. Euthanasia continues to play a central role in the lives of my grandparents right now; to a certain degree my grandmother’s condition demands its discussion and my grandfather is actively involved in demystifying a grave misinterpretation of the country’s Euthanasia law. To put it simply, since 2002, the Dutch law states that euthanasia in the case of severe dementia is permitted by a written statement produced in a former state of consensual ability (alongside a slew of thorough testing and approval procedures). Despite this, there has been significant controversy in the Netherlands surrounding this law, with an opposing group of doctors against the euthanising of an individual who no longer has the capacity to agree with their formerly written statement. Although consent was formerly given, the individual’s deterioration renders them unable to consent. Understandably, euthanasia is an incredibly difficult topic and not an easy deed to perform. Of course the problem here is that in an even more deteriorated state, there is perhaps even less reason to live?

In terms of the film, euthanasia continues to play a vital role, however only insomuch as it surrounds the lives of my grandparents who are currently still living with dementia. As has become clear to me, that which has been getting significantly less attention than high-profile court cases is the inner lives of those living with dementia, that is to say those diagnosed with the disease and those primary caregivers caring for someone who has it. Perhaps informing on what these people are truly going through could have an important impact on such discussions, and that is what I would like to contribute to. My grandfather, Prof. Dr. J C Molenaar, has the unique perspective of being involved in both the inside and outside (the academic and political discourse) world of these matters and so I look forward to the second part of my shooting schedule to catch some of this perspective on film, and seeing where (else) this might lead my research.

My grandfather helping my grandmother with eating.
My grandparents brushing their teeth.
My grandparents watching TV.
My grandparents on a walk.
My grandmother, To Molenaar.
My grandfather, Jan Molenaar.