Quality of life improved with dementia simulator

Ruth Mark, neuropsychologist at Tilburg University, is interested in the human memory. She’s involved with Into D’mentia: a dementia simulator. “The idea is that simulation will improve caregivers’ and professional health care professionals’ levels of empathy.” Mark hopes that this will lead to a better quality of life, for both patients and caregivers.

The simulator is kept in a mobile container. A kitchen-diner has been reconstructed inside of it. Participants are given a special jacket with speakers in it, to simulate the inner voice of the person suffering from dementia. “People complete twenty to twenty-five minutes of assignments. They’re literally in the shoes of the person suffering from dementia.” For example, the simulants have to unpack the shopping and put it away in kitchen cabinets. Obviously, the simulation doesn’t really cause people to start suffering from dementia: “The main thing is that it simulates how it feels to suffer from dementia.” The ‘inner voice’ causes confusion.

It definitely has an effect on the simulants, Mark tells us: “They thought it was really impressive, some found it scary, but everyone was impressed and thought it was a useful experience.” But that was the pilot study, says Mark: “We want to perform an effectiveness test. We want to look at the levels of empathy and observe whether the simulation has any effect on the patient – caregiver relationship. In the end, we want to see whether this effect works all the way down to the patient.”

‘Caregiver burden’
The new government policy is shifting much of the care responsibility to the caregivers. This has all kinds of negative effects on caregivers. Caregiver burden, Mark calls it: “Caring for someone is hard work. We want to see whether this simulation really lessens this burden. We want to study this in the short term but we also want to look at the duration of the effect.” In the long run, Mark also wants to draw up the effects of simulation on health care professionals.

Hopefully, with a scientifically corroborated simulation, participants will be able to claim expenses from their health insurance companies for the simulation, says Mark. Currently, one simulation costs about 240 Euros. With subsidy requests, Mark hopes to be able to perform follow-up measurements. The requests for subsidy are being considered as we speak. “In the long run, we want to offer a promotion trajectory because we’ll also need to measure the tenability of the effect over the long term,” says Mark. “We hope that both parties’ quality of life will improve.”

Dementia patients are human beings too
Mark: “Many people view dementia as something scary. But people need to have a better understanding of it. The patients want to retain a valuable role in society. Society sees dementia patients as a group, but they’re individuals, each with his or her own history. They’re considered the disappeared people and that’s how society treats them. This has to change.”

The simulator was set up in conjunction with the Vrije Universiteit Amsterdam. The Tilburg professor of clinical neuropsychology Margriet Sitskoorn and director of Into D’mentia, Jan Rietsema, were also involved with the simulator’s development.

Written by Rik Wassens