Virtual dementia reality: whose reality is it?

Ok, so maybe I’ve got it wrong (again or still!), but surely focusing on what people without dementia think dementia might be like and spending vast amounts of money on virtual reality products to show more people without dementia what it is like for us seems a little off base to me. One or two consumers, in the early stages of dementia cannot possibly know what it is like for the many with advanced symptoms of dementia either. Selling or promoting a product totally based on the deficits, simply to help someone be kinder, is not really that helpful for people with dementia. Anyway, for now, this is my current thinking on the topic.

I have been told some of the data being collected from the Virtual Reality tours and gadgets around the world indicates they ‘improve care’ of people in residential settings, so that is definitely a positive. But if we need to spend millions on technology to produce what people without dementia think it is like in our world, simply to make people provide kinder more compassionate care (paid or unpaid care partners), there must be something wrong with the training in the first place.

What I’d really like to see more of are videos and articles written from a human rights and disability support perspective, with practical ideas and strategies on HOW TO BETTER SUPPORT the disABILITIES of people with dementia, with a positive focus, rather than a deficit based one. This video may have helped the journalist feel more kindly towards people with dementia, but will it impact the lives of the 50 million of us living with it today? Personally, I very much doubt it.

By the way, kindness cannot be accused of being an unworthy outcome, but if that is the only outcome, then I doubt it is enough to justify the vast amounts of money being spent on virtual dementia worlds, nor that it really makes a difference to the lives of people with dementia vastly different in the institutions into which they are locked away on.

But if people working in dementia aren’t already proving kindness based care, they should not be working there. Of course, I have no doubt I’ll get feedback suggesting I should not be so negative about this new virtual world being showcased around the world, and winning people without dementia all sorts of awards, but there you go, I’ve done it again. I’m always prepared to speak from my heart. The DFC initiatives and campaigns seem to be in the same well-funded boat…

Read the latest on kindness here: https://www.dignityhealth.org/-/media/cm/media/documents/PDFs/The-Healing-Power-of-Kindness.ashx?la=en

By the way, kindness is a lot less expensive.

34 thoughts on “Virtual dementia reality: whose reality is it?

  1. Agreed Kate, as my mother has lived with it for at least ten years and has moderate dementia by all clinical standards but has no trouble seeing stuff, any more than other 92 year olds. I have watched videos on this stuff during my studies at UTAS for the BDC, and I couldn’t really see the point. Surely the people they are aimed at, that is those close to and caring for the person with dementia, are able to talk to the person with dementia and hear how it feels? As you say, I think kindness and compassion and inclusivity should surely be a given rather than something to be squeezed out of people in such ways?

    Cheers
    Adrienne

    • My constant feeling or belief, is the sector keeps creating new and novel ways to make up for the fact that care is generally too often so poor…. when maybe the serious amounts of money invested in these ideas could be used to provide actual services for us instead. DAI, an undunded organisation, provides support groups for people all around the world, and yet locally, there is almost nothing available. And people wonder why I’m so cynical…

  2. A great conversation, I’m so glad you posted this topic Kate.

    As a teacher of the Cert IV dementia unit at a leading training provider I have struggled with the concept of VR.

    Clearly the aim is to increase understanding and thereby empathy, but who’s ‘reality’ is being simulated? No two people experience dementia the same way, just as no two people experience any other disease the same way. Yes, there may be common factors, but does the experience then lead the learner to assume that every person living with dementia has those experiences? All the time?

    Considering this – if the virtual reality isn’t replicating every person’s experience is it actually a harmful tool, as it might lead learners to make assumptions.

    Surely education should encourage people to understand that each person living with dementia has a unique experience and therefore their ‘reality’ can’t be virtually experienced.

    There is no escaping the fact that technology plays a huge part in education (and every other part of life these days), so I guess the question is ‘How can technology be used to better educate carers and the wider community?’

    • Thanks Cathy. I’ve been holding back on this one, as know most are doing it with food intentions. But the money spent developing them all, the awards being won by those involved, makes little difference and as you say, may even be causing harm by entrenching further incorrect stereotypes and misperceptions about what’s it’s like for most.

  3. I haven’t actually tried out any of the VR approaches. I have been (critically) interested in the idea of giving people pseudo experiences of living with a disability with the idea of helping to promote awareness and understanding. For a long time people have done this with blindness/vision impairment and wheelchair use; but some studies indicate that they can backfire in promoting understanding. They may make people really underestimate the abilities that a person has (while living with disabilities) and the amazing adaptations they make. This was an interesting read with regards to low vision https://nfb.org/images/nfb/publications/jbir/jbir15/jbir050201.html

    • Thanks for the link Jacki… very interesting. In my mind, the jury is still out, but I am very concerned so much money is going into it, and we still have so few examples of truly authentic PCC.

      • I agree with you so much Kate it’s people like ourself so who has dementia is the one doing all the work we need funding for the real research & we must be part of it kind regards

      • It’s stuns me the advocacy organisations won’t help fund the work of DAI, yet do little for people like us. Shocking too that sometimes, to be advocates, we end up paying for the privilege! Kx

  4. Interesting perspective. Never really thought of the use of expensive equipment to mirror Dementia for those of us without it. Does seem a waste of money when what really is needed is kindness and for many some sense of security (which perhaps the technology money can buy?)

    • Who really knows dear Michael… I hope when I advance, I might be able to express in some way what it is really like, and it will be interesting to see if it is anything like the VR technology is claiming it to be. xx

  5. Totally agree. Seems to me that the extent of dementia diagnoses has been a licence to print money for some businesses. I don’t believe that many of the ‘innovations’ have been evaluated to demonstrate improved ‘care’. In reality they are considered in light of their ability to dispense with staff time/human contact – in other words their worth as cost saving measures. Communication skills, patience, gentleness, kindness, as well as physical exercise and satisfying activities that do not diminish a person are all much more important I believe.

  6. Yes Kate, I agree. I suggest that what is more likely to be helpful is the emphasis on the humanness of the person with the dementia, that while somewhat changed in capacity and even personality, their essence is the same. And this essence can only be nurtured if we can appreciate, welcome, invite and strengthen their inner self. AND become more acutely aware of how we without dementia interact within the relationship. Perhaps this is more about us (without dementia) that the person with dementia??!!

  7. I agree wholeheartedly. Watching a virtual reality video is a “do it once and forget it ” experience but it will make money for the producers and being an IT thing it is politically correct. I wonder if there is a similar thing so one can experience what it is like to be a breast cancer sufferer or would the money be spent instead on finding a cure, better treatments , trained specialist nurses and support services?
    My husband has Lewy Body Dementia and as his totally untrained carer, who just has to “wing it” I have found by trial and error that just talking to the person with dementia, remembering that he/ she is still the same person and probably only too aware of what is happening to him/ her is the best thing you can do.They don’t suddenly become non people, to be locked away. A little kindness and consideration goes a long way. And you are right- kindness is cheap.

    • Your sentence; “Watching a virtual reality video is a “do it once and forget it ” experience but it will make money for the producers and being an IT thing it is politically correct” rings true for me. Well put, and on the mark I suspect. And this is so tue too; “talking to the person with dementia, remembering that he/ she is still the same person”. Thank you for connecting here. x

  8. Well said Kate
    I think spending money on care, improved support and opportunities for people with dementia is a better thing than VR technology. Empathy and kindness is a good start but real support and opportunities to live well are needed
    Lenore

    • Agree with that too Lenore, but kindness is often missing in action in the real world, including in our hospitals, nursing himes and private worlds. As an inpatient again recently again, kindness was nowhere to be seen from almost all of the nursing staff, but was there in abundance from the doctors, which is the oppoosite to how I used to find hospitals. It was an interesting ‘anecdotal finding’ indeed.

  9. Yes Kate, I agree with you. The first time I saw one of these virtual dementia experiences, I cringed. They are problematic from a multitude of different perspectives including of course the fact that everyone’s lived experience is different. Furthermore, the trial doesn’t talk about where in the devolution of the disease these symptoms may (or may not!) occur. Thus it may potentially further entrench the view that from the first moment of diagnosis, the person who is living with dementia is somehow totally incapacitated, which of course we know is not true.

    Others have commented that one should observe, listen, be in tune with the person living with dementia in order to better understand what their experience is. I completely agree. However, that said, from a care partner point of view, I found it enlightening to better understand through Teepa Snow’s videos for example that as Alzheimer disease progresses the person living with dementia experiences changes in their field of vision. Armed with that knowledge, I was able to observe behaviour and my mother that I could then understand knowing what I knew about changes in the field of visual perception. Sadly, some people have to be hit over the head with a hammer before they understand what a blow to the noggin might feel like. Not everyone is a smart as you and I 😛

    Yes, these tools are sadly lacking. And in some ways they may do more harm than good, and yet, in other ways, they may be fast and efficient tools to help people understand that people who live with dementia experience the world in different ways than people who don’t live with dementia. This is not to exonerate, nor is it to endorse. And I suspect from your less than full frontal attack, that you also are not ready to outright condemn something that might move our case forward while at the same time not being totally politically correct.

    I think a lot more dialogue, discussion, disagreement, and dénouement is sure to follow 🙂

      • I think kindness is intrinsic to being truly human. Pity is evasive. Compassion can be about academia. It’s defining respectful kindness that’s the problem. I’m wondering how disrespectful it is to play the Virtual Reality Dementia Game? We don’t play the Being Collateral Damage in Syria Game do we?
        You are in control of Virtual Reality Dementia when you play – so you are empowered to turn it off when you tire of the game.
        We each have our own umwelt – our own world.
        No one can be the reality of another human being – kindness can link, love can embrace but our uniqueness is special. We each have our own umwelt – our own world.
        That’s all very muddled isn’t it?

      • I totally agree with your sentiments on virtual reality. I prefer using a coaching technique from NLP called the three chairs or perceptual positions. I find this has startling outcomes.

      • Hi Steve, I’d love to learn more about NLP. Feel free to send me your contact details via my contact form. Or I can email you using the one you have here, which I can see, but noone else can?

  10. He he he… Don’t you think that videos of people talking together about their symptoms might be more useful? After all, I asked you about yours Kate!
    I loathe the pretention that anyone can truly empathize with someone else….unless they’ve shared similar experiences. Kindness isn’t the be-all of professionals….it’s knowledge, learnt mainly on the job.
    If I were delivering the CIII & CIV units on dementia to people in training, I’d have real PLWD as guest lecturers. They’d be paid, too.

  11. Hello Kate
    I have been thinking the same thing about the Virtual Reality programmes. It is a big money spinner for the companies that promote them.
    So glad that you are putting your opinions out there – keep going

  12. How about listening, watching and hearing rather than taking a virtual look at how things might just be. I always say there are no experts in dementia because everyone’s experience of the condition is personal to them!

    • Yep! Definitly agree. I also suspect by the time we progress to the ‘text book symptoms’ of later stage dementia, none of us can accurately tell an IT developer what it is really like????

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