Day of Dementia | My interview with Adelheid Roosen

"An hour? That's worth it!", said journalist Frénk van der Linden when I told him about my upcoming interview with Adelheid Roosen. And he was right. After all, at many conferences there is rarely the quality time to get to know people more extensively.

The Day of Dementia. That was the name of the conference I moderated as chairman of the day last month. Over 400 healthcare professionals gathered in the Reehorst in Ede. To catch up on current affairs and be inspired. For example by theatre and film maker Adelheid Roosen. She took care of her mother, who suffered from Alzheimer's, for 12 years. A few years ago, she passed away. Adelheid made a high-profile documentary about her. Also last year, together with Hugo Borst, she portrayed the care for people with dementia in "In de Leeuwenhoek", a docu about the care institution of the same name in Rotterdam.

Curiosity: "the greatest capital"

The day before the congress, I completed an interview course with Frénk. So I was able to put what I had learned into practice. During the course, he regularly referred to the words of Louis Tas, the psychiatrist who coached Ischa Meijer for years. "Curiosity is the greatest capital people have". As I prepared for the conversation with Adelheid, this phrase resonated. Indeed, I read an NRC interview with Adelheid in which she said:

"My mother is an Alice in Wonderland, I want to understand her world, I am curious about it"

While talking to me, Adelheid candidly told me that her mother was never really a sweet mother. All the more surprising was the side of her mother that Adelheid got to know precisely when Alzheimer's set in. When asked if she experienced losing her mother during dementia, she indicated the opposite: "I found her again. She could finally be the child with her again. And with her. In all curiosity, she got to know a very different woman.

Mum Eats Flowers

While talking to Adelheid, we watch the short video "Mom Eats Flowers" together, in which you see Adelheid being fed flowers by her mother. And eating these herself. With words that are incomprehensible to outsiders, but from which you can see that she is enjoying herself. Adelheid does not take on the role of "nurturing parent", but rather as a "free child". And precisely that choice in attitude and perspective makes all the difference. Not a sad approach, but rather a more playful and joyful one. And what a lot remains just then in this contact.

A strange mix of feelings overwhelms me as an interviewer: it feels intimate and at the same time rich to watch this film together, in which mother and daughter are so vulnerable.

And although "mum" is simply vulnerable because of her illness, Adelheid knows how to shift to this level. She has the gift of being completely herself and I see what that does in her contact with others as well. For example, with the audience. The conversation has barely got going, or people in the audience also come up with their own personal stories. And also, workplace frustrations. Adelheid's openness also struck a chord with me: I spontaneously took off my tie and an applause from the audience followed. The flow came even more into the conversation.

A little less protocol?

Because what if, in professional care for people with dementia, you dared to let go of protocols a little more? From nurse to director of a care home. Adelheid talked about outings and activities she undertook with her mother and other people with dementia and how enormously people brightened up. And how she was shocked to see these people sink back into their chairs by the window the next day. Her experience is shared with the audience. It is also revealed how district nurses find it "easier" in this to still be able to care for people at home, versus nurses who have to follow the lines more strictly in a care institution. Adelheid can visibly excite herself as the audience reviews numerous rules and protocols.

What if you get Alzheimer's yourself Adelheid?

"I still think every day: I am still SO curious about who I will become later when I grow up", spoke Adelheid in the NRC interview. I cited these words during our conversation, in the context of her mother's Alzheimer's diagnosis. Because after this diagnosis, Adelheid walked out of the doctor's surgery with her mother, only to walk back in alone a minute later to inquire whether she will not one day also become demented?

Towards the end of our conversation, I therefore asked Adelheid the rather exciting question: "Who will you be Adelheid when one day, God forbid, you will get Alzheimer's yourself?". It became silent. At Adelheid's place. And in the room. From a brief, silent reflection, she blossomed, pushed her chair aside and started vividly describing what her stay should look like. Especially from the experience she now had with her mother, she knew how to do that so well:

"I want pots of paint in my room! With which I can mess around on the walls!".

And, as she lay down on the floor, she continued "I want a very clean floor from which, whenever I feel like it, I could eat every day!". The room burst into laughter. Not because she might have been 'so crazy', but because she made it so palpable what is essentially what people with dementia are about now. Facilitate them on another level. And if that is on a childlike level, then let it be so. Just then, care and contact becomes a little more human again.

Your perspective on dementia

Adelheid's approach towards her mother is perhaps a special one. After all, what if your client or loved one with dementia is not so loving, but rather angry and petulant? And yet. Everyone in the room felt the message. "Is it possible to take a different perspective when it comes to caring for your client or even, your loved one with dementia?". Adelheid gave a wonderful lead ... And, what a treat for me to be able to speak to her about this at such length. We ended with a big hug on stage. And in the corridors? That's where many people continued to chat....