I have worked in the field of UX, Customer Experience and Online Learning for about fifteen years now, and am always keen to learn more about how to improve a user experience. It's really important to be able to understand your user from their perspective: to put yourself in their shoes, to show empathy, and most importantly be aware of their needs and limitations. This week I had the opportunity to take part in a training experience I've never had before, and I jumped at the chance.

My father has dementia and now resides in a care home in Oxfordshire. As a relative of a resident, I was offered a space on one of the care home's Continual Professional Development courses - a Virtual Dementia Tour - to experience what it is like for a person living with dementia.

The experience itself and the discussions with the carers and support staff afterwards were enlightening. I was there for personal reasons, but I also observed the training with my 'professional' hat on.

What was the experience: how did it work?

Participants were asked to put on the following to simulate the experience of having moderate dementia:

  • Sole inserts for your shoes -  with moulded plastic spikes (to create the sensation of peripheral neuropathy - where the nerves in your extremities become damaged eg: feet, and walking becomes painful)
  • Cloth gloves on both hands (to remove finger dexterity)
  • Dark glasses with a central spot on both lenses blacked out, and the sides blocked (to mimic the experience of someone with macular degeneration - blurred or no vision in the centre of your visual field - and lack of peripheral vision)
  • Headphones, later with a loud soundtrack of 'background noise', including a mix of radio sounds, TV sounds, mechanical sounds, people talking etc (to create the 'background noise' that a dementia sufferer 'hears' 24/7)

We were then asked to walk down a corridor to a room which had various objects to explore, and distracting flashing lights rotating in various corners. The 'background noise' was then switched on, and unbeknown to us, we were asked to conduct various tasks.

How did the experience make me feel?

Not in control, scared at some points, confused, and somewhat redundant and isolated as a person. My feet hurt when I stood too long in one spot, I only had partial vision and could not make out everything clearly in the room. I could not use my hands effectively to pick things up or manipulate items as I am normally able to. The 'background noise' was disorientating and meant that you really could not hear anyone talking to you unless they were very close to you. Any sudden loud noise (the soundtrack of noise played included various occurrences of ambulance sirens and banging doors) was really quite shocking.

What did I learn?

Afterwards, Pete (the instructor from Training2Care) was very skilled at explaining the hows and whys of the experience. He also facilitated a good discussion/debrief amongst the care home staff (pitched just right for the target audience) on how they could better support the residents with dementia in their care. 

From this, I was able to put into practice key elements with my Dad immediately afterwards when I went to visit him. At the very least I have a more informed understanding of how he must experience his world now. I spoke to him on his dominant side - apparently his hearing above the 'background noise' is much better in that ear. From now on, I can make sure that I stand or sit face-on so that he can always see me clearly, and thus avoid issues with his peripheral vision. I am also going to investigate getting him more supportive footwear, to help with the soreness affecting his feet. And I will generally be more aware and sympathetic to his needs within his immediate environment.

Not only was the whole experience valuable to me personally, but professionally too. From on-boarding the recipients of the training, to delivering the main experience (creating a world as it might be perceived through the eyes and ears of a dementia sufferer) and through to the debrief (how to learn from your experience and put behaviours into practice), it demonstrated how a user journey can be a light-bulb moment and hugely inspirational.

The experience was truly eye-opening in helping you understand what it might be like to have dementia, and the journey that we were taken on gave us the experience from the outset. From the very first minute of the session - and he didn't introduce himself - Pete elicited a response from his audience. Everyone felt he was being rather rude and very sullen with his lack of introductions and surly behaviour. But later he explained that this was a deliberate act to show us how a dementia patient might feel when a carer, who is not thinking about their resident's needs, interacts with them at the beginning of their shift. I felt he brought meaning to the experience, had a real understanding of his audience and inspired everyone in the room.

Would I recommend it?

Yes, absolutely! For anyone who knows or cares for anyone with dementia, it is invaluable. And to educate everyone else, it would be a valuable experience too.

This experience also showed just how important it is try and to understand your users or clients - in whatever field you work in - to walk in their shoes and get an insight into their perspective, needs and limitations.

How real was it?

Well, according to research, probably as close as one is going to get.

-----

For more information:

Books I have read which have also helped me try to understand what a person with dementia is experiencing: