Although Marleen’s time with the Association for Dementia Studies is nearly at an end, she’s been sharing her ‘Through the Dementia Lens’ work with us and members of the wider university. We’ve found it a really interesting experience, so thought we’d share it with you in a bit more detail.
What is it?
‘Through the Dementia Lens’ is a project from the Netherlands, with one of the developers being the Trimbos Institute. During the project a Virtual Reality experience and associated e-learning course were developed and evaluated for family carers of people with early stage dementia in order to improve their understanding of dementia and empathy. While watching a 360-degree film, a family carer experiences what it is like to have dementia. Wearing a headset and earphones, you can experience a few everyday situations from the perspective of a person with dementia living in their own home such as putting away shopping, making a cup of coffee and being at your own birthday party. The focus of the film is on social interactions for a person with early stage Alzheimer’s disease.
(all photographs are © Trimbos-instituut)
The device reacts to your movements to enable you to look around and feel part of the experience. You hear how people talk to and respond to the person with dementia, but also how the person with dementia interprets what is going on and how they feel about it. To make the experience more realistic, you can hear ‘your’ thoughts in a male or female voice. It helps you to understand the confusion, insecurity, suspicion, disorientation and frustration that they might experience, but also their reasons for some of their actions. There are also examples of how body language can have an impact, helping you reflect on the importance of non-verbal communication.
The film is accompanied by an e-learning course comprising three 20-minute lessons which reflect on the family carers’ own experiences in relation to the scenes in the film. It aims to improve the carer’s ability to empathise with the person with dementia and provide support to strengthen their relationship. It also helps them to understand alternative ways to react in different situations, or different approaches to try. Results from a pilot test have shown high user satisfaction with an improvement in empathy, confidence in caring for the person with dementia and positive interactions with the person with dementia.
More results from the pilot test can be found in the article ‘A virtual reality intervention to improve the understanding and empathy for people with dementia in informal caregivers: results of a pilot study’ (Wijma et al, 2018) – access is restricted so you may not be able to read the whole article, sorry!
What did people think? Our experiences
It’s difficult to explain exactly what it’s like to someone who hasn’t tried it themselves, but some of the ADS team have given their thoughts on how they found the experience of the film (unfortunately we weren’t able to try the e-learning as it’s in Dutch and our language skills aren’t that good!).
“You soon forget that you are wearing the headset and become fully immersed in the film clips. It really helps you to understand how it can feel to have people talking about you within earshot, or how confusing a situation can be when you can’t relate to it.”
“It was really absorbing and didn’t feel staged. It helps the family member to reflect on how they behave and react, showing you things that might annoy you as a family member or carer but allowing you to understand why it happened or how it feels from the person with dementia’s point of view.”
“I can imagine that many people who’ve watched the film have that moment of realisation where they see how the family member talks to the person with dementia and thinks ‘I’ve done that’.”
“I was impressed but found it a bit disorientating which I suppose is the point. It was interesting to see how it feels to not recognise people that you should know”
“Thank you for the VR demonstration which was a really immersive experience and I feel would have great benefit to UK care homes”
Lecturers from the wider university also commented that it would be useful when educating their students.
While virtual reality may not be to everyone’s taste, we found this to be a really interesting experience that illustrated many important points about dementia in a clear and effective way. Thanks to Marleen for sharing it with us.
The Lived Experience of Dementia
We should also acknowledge that a similar style training resource combining virtual reality and exercises is available in the UK. ‘The Lived Experience of Dementia’ uses the Alzheimer’s Research UK ‘A Walk Through Dementia’ app. It puts you in the shoes of a person with dementia, but is aimed more at healthcare professionals than family carers.
If you would like further information about ‘Through the Dementia Lens’ please visit https://www.dementiebril.nl/ or contact Marleen Prins.
Wijma, E., Veerbeek, M., Prins, M., Pot, A. & Willemse, B. (2018). A virtual reality intervention to improve the understanding and empathy for people with dementia in informal caregivers: results of a pilot study. Aging & Mental Health, 22(9), 1115-1123.