Dementia and caregivers | Design & Mental health
What can design do for people who suffer from Alzheimer's, sexual traumas or those in need of (online) empathy? Eindhoven alumni tackle the social taboos after having studied them for their graduation - often inspired by a personal experience. In this series, we talk to Eindhoven alumni about design and mental health. This episode is about Evie Sparidaens, about dementia and her project ‘Hou vast’ (hold on).
Evie Sparidaens graduated on the subject of dementia. It is not the patient, but the caregiver, that is central to her work. Last year she presented her work at the Graduation Show, where DAE graduates show their projects during the Dutch Design Week. The title of her project: Hou vast. A short documentary film about her grandmother and her aunt. Her grandmother got dementia, her aunt started taking care of her.
"In the Netherlands there is a bit of a taboo on crying.”
Her project is actually “an invitation to cry”, as a manager of an elderly home who watched her film put it. "I like that description”, says Evie. With this film she wants to provide insight into the emotions and pitfalls that 'caring for’ bring along. In the film, her aunt Albertine speaks of a double life. The care for her mother takes up so much time that it no longer seems like there is room for her own life.
During the Graduation Show, the screening of the film evoked unexpected emotions among the visitors. Especially the recorded messages that her grandmother left on her aunt’s voicemail with a trembling voice. These situations are recognizable for many and brought some visitors to tears.
Evie invited her grandmother's geriatrician to share some background information about the disease in de film. Still, the documentary is not meant to be a ‘tool for information’. Evie notes that it is precisely the abundance of information that can sometimes be very tiring for caregivers. The empathy part often remains underexposed. By talking to a lot of caregivers, she found out more about what difficulties they are facing. It is sometimes difficult to put feelings into words, for example. Because it is hard for an outsider to empathize with a carer or someone with dementia. How exactly does it feel to deal with such a situation?
As a follow-up to the film, she also made a booklet about what it feels like to have dementia. With phrases like:
Why does it take me so much effort to remember things?
I am afraid.
I cannot find the right words.
She doesn't know yet exactly how to proceed with the film. Since the screening she has been asked to give lectures on dementia on a regular basis. And a general practitioner has started to use the booklet in her practice.
Evie is still in close contact with people with dementia. And she still speaks to caregivers every now and then. Recently she asked a gentleman, who takes care of his wife 24 hours a day, how he saw the future. It was a question that made the man very emotional. Because it was painful, confronting and, above all, a question that no one asks him anymore. There were always questions on a practical level, but no one raises deeper issues like this. It is a difficult thing, Evie acknowledges. "In the Netherlands there is a bit of a taboo on crying.”
Together with Mr Koops of the OUD/NIEUW project, she came up with a set of cards with 'forgotten questions'. To help raising that difficult question about someone’s future, but also about issues like: 'Do you ever get angry with the loved one you are caring for?”
The odd one out in the world of design
With her interest in older people she might be the odd one out in the world of design. But it motivates her to find out what she can do for groups of people that are not so familiar with 'design'. After graduating, she has been approached for various projects. But her passion lies in making films, especially personal portraits. "We're used to capture the highlights of a person's life, but I want to document the ordinary life. Making the ordinary special.”
She already made a short film about a great-aunt. She asks her questions about her favourite places of her youth and takes beautiful shots in and around the house. When her great-aunt died, the film was screened during the funeral. In the film you see the great-aunt talking at a kitchen table. Meanwhile, she nonchalantly leafs through a magazine. A typical scene of her aunt, who didn't like to be in the spotlight. An ordinary life, but still so special.