Here’s a truism for you: dementia is a god-awful thing. A savage and remorseless condition, it strips away a lifetime of accumulated experience and personality, eradicating memory and emotional attachment, sometimes seeming to erase a person entirely. It’s a heart-rending process to witness, watching somebody vanish by degrees in this way, seeing them become angry, depressed or violent, and losing all recognition for the people they’ve loved for their entire lives.
Sometimes, the decay can be kinder than expected – patients may drift into a kind of happy reverie, a sort of peace descending as their ember fades. Often it does not happen like this. In many cases, someone who has begun to exhibit the early signs of dementia will be aware of what’s happening, the unavoidable degradation made all the more bitter by the diminishing moments of clarity which pass fleetingly across the lens of their consciousness. Agonisingly for those around them, it can be supremely difficult not to will on the acceleration of the process, or indeed the final embrace of death, in a desire to see the tragedy of this recognition extinguished for good. There is scant comfort in knowing that the final stages of erasure leave little room for self-reflection.
And yet, for every guilt-saturated second in which you may wish for the release of a friend or relative from this inexorable grasp, you can be stung a thousand times by the merest hint of recognition in their eyes – a tiny smile, a grateful squeeze of the hand. The darkest curse of dementia can be the fragments of the person it leaves behind.
Of course, this conjecture comes from the selfish perspective of the witness. I speak with a little experience: both my father and grandmother were ravaged by dementia in the final stages of their lives. As a result, I know that it’s difficult enough to be involved in the process, even at considerable remove, that it becomes easier to grieve in advance. To begin, quite frankly, to think of them as dead already.
Then, someone you thought had vanished resurfaces, gasping, for even the briefest moment. In the last days of her life, I visited my grandmother in hospital and talked with her about things which had happened – 30 years ago in my childhood and 80 years ago in her’s – in astonishing detail: memories of happy days spent in sunshine and light. She was frail and faltering, but she had clarity and emotional continuity. A woman I hadn’t seen for years was there once more. She never left that bed, and did not go gently, and I have never really forgiven myself for all the conversations I didn’t have in the months and years prior, the encounters rushed through, the moments wasted.
Years later, when my semi-estranged father passed, I wasn’t lucky enough to have another chance. Never tremendously close, we had precious few shared memories to revisit and he’d lost all recognition of me well before his final days, but I know there were things which eased his passing – happy recollections of his own. Even when he began to exhibit signs of unpredictability which sometimes escalated to violence, there were bits of his old self in between.
The point is this. Dementia can present us with a locked door, a sullen slab of unresponsiveness. It’s exhausting, harrowing, alienating. It’s only going to become more common, but there is hope. Pharmaceutical trials are showing some results in the amelioration of its onset. Mental health practices and dietary advances are leading to fitter, healthier brains more resilient to its advances. And VR may have its part to play as well.
Video via tribemix
It comes from Alex Smale at TribeMix, primarily a social media marketing company. Smale himself has a rich games industry background, beginning his career job at NMS Software, developers of pinball sim Tilt.
After a few years of moving around “in search of ever higher pay cheques”, Smale eventually found himself working with at Bitmap Brothers as head of art, where he rounded out a decade in games. Since, he’s spent a stint running a pub (“brilliant fun, quite dangerous and always interesting”), and set up a photography business just as Facebook began to take hold, getting an early grasp of the potential of the medium for promotion. After an even wilder turn working as the head of marketing in a zoo, Smale set up his current business.
“Our friends, Stan and Dulcie, are 99 and 94 years old respectively. Over the past two years, we watched them go from active people walking into town to do their shopping, to losing their confidence and never leaving the house.
“I eventually decided to set up a social media marketing agency, Tribemix, to help other businesses use social to grow. That’s been going really, really well. I’ve had one eye on VR since the announcement of the Oculus Rift. I knew that social media and VR would converge, and brands would need to create engaging experiences on this new platform. So I’ve gone back to my roots and we’ve been working on developing branded social VR experiences for our clients.
“We had some elderly neighbours who hadn’t left the house for a long time due to disability. We’d taken them back to some of their favourite holiday destinations using Street View and an iPad already, and I thought, ‘wouldn’t it be great if we could take them on holiday again using VR?’ So I created a basic beach scene to run on the Rift for them to try.”
The experiment was a successful one, and Smale realised the potential of the technology to offer hope.
“I had a friend who worked in care homes, and I asked him to introduce me to one so I could try what we’d made on some other elderly people. He put us in touch with the amazing folk at Belmont View in Hertford, which specialises in dementia care and is run by the Quantum group. They were really open minded to the idea and really supportive. Before this, I didn’t have a clue about dementia, but we’ve learned a lot.
“We worked with them for over a year, developing and fine-tuning a range of experiences specifically designed to help people living with dementia. The carers, managers and residents have all given us invaluable feedback which has enabled us to create something really unique and effective. The change in the residents’ behaviour is stark, as you can see from the video.
“You can’t just put an Oculus Rift on an elderly person’s head and walk away. There’s a carefully developed process we’ve created that ensures the wellbeing of the patient at all times and ensures a positive experience for all”
The sort of experiences which Tribemix has been developing are very much at the gentle end of VR, for obvious reasons. They’re relaxing environments rather than games, but Tribemix doesn’t use 360 degree video or photography of real-world locations, instead preferring the environmental control offered by 3D modelling.
ARTICLE CONTINUES BELOW
“This is all realtime 3D,” Smale clarifies. “Yes, there’s a trade-off in realism. But the control we have in 3D environment is a world apart from what we can set up to film around a 360 camera rig. And it’s this control that makes all the difference. People living with dementia are often incredibly sensitive, so being able to control simple things such as the distance birds are from the camera, or position of the audio is vital.
“And because of this sensitivity, you can’t just put an Oculus Rift on an elderly person’s head and walk away. There’s a carefully developed process we’ve created that ensures the wellbeing of the patient at all times and ensures a positive experience for all. It’s important to understand, this isn’t for everyone. And even for those people who do like it, they don’t necessarily always like it. So it’s always important to ensure that the experience is carried out on a voluntary basis and never pressured or forced.”
Smale raises a good point. It can be incredibly difficult to understand exactly what a dementia patient wants, and even harder to predict how they may react to a sudden or unexpected change in environment. Smale says that not only does the experience tend to relax people, it also offers a longer-term respite from some of the emotional peaks and troughs so common with the condition and assures me that the assessment processes are based on science and the concrete experience of healthcare professionals.
“That video is just the tip of the iceberg. It only shows a few brief minutes from a small number of patients who were kind enough to let us film them and show our work to the world. We’re really grateful to them for letting us do that, as it has opened a great many doors for us.
“But what you don’t get from the video are the long periods of serenity that the patients enjoy. It’s really relaxing just watching them use it. You often wonder if they’ve fallen asleep behind the headset. But then they’ll whisper something about the scene they’re in, and you know they’re still awake. Just very, very relaxed.
“People living with dementia are often confused and distressed. Rather than trying to bring them back to what we consider to be reality, it is better to live with them in the reality that they are in. A virtual experience is a way of taking them to a nice place from wherever they feel they currently are in a way that is actually far less stressful than taking them there in reality. For many, leaving the comfort of a care home and getting on a bus to travel somewhere is just not possible. Our virtual reality experiences allow those who haven’t been able to leave the care homes to enjoy a day out. With our robust processes, we ensure that if at any point, there is a risk of distress, we end the experience immediately and bring the patient straight back to well-being. Something that has always been very important to us to maintain.
“The dementia experts at Quantum have developed a wellbeing assessment tool based on the Abbey Pain scale. This records the wellbeing and behaviour of the patients before, during and after their VR experience. It’s really useful data that clearly shows a positive benefit across the board. We’re now working with two NHS hospitals on a behavioural research study which will expand on this work. It will also demonstrate the effectiveness in an acute setting.
“People living with dementia are often confused and distressed. Rather than trying to bring them back to what we consider to be reality, it is better to live with them in the reality that they are in”
One of the key challenges facing dementia research is that the condition is often not treated until well established. Often it will go unnoticed, and many patients express understandable reticence to bring it to light, fearing stigma attached to it, not wanting to cause concern or present a burden. Stimulation and emotional engagement are increasingly considered to be effective methods of strengthening the brain against dementia, so I ask Smale if his work has potential in preventative care, or whether it might actually slow the onset of an established condition.
“This has yet to be determined,” he admits. “We’re hopeful that our research studies will begin to demonstrate some really useful outcomes, such as reduced medication or improvements in appetite. We have already seen countless memories brought vividly back to life in the patients. Sometimes patients will come out of the experiences and recount childhood memories linked to the experiences for half an hour or more. It’s magical to watch.”
It’s important to note that Tribemix is a for-profit company, not a charity. Whilst he may have noble goals, Smale also has his own bills to pay, and VR is an expensive business. Nonetheless, this isn’t an exploitative venture.
“The care providers will be the ones who have to cover the costs of the systems,” he says. “We’ve tried very hard to keep this as low as possible and we’re at a price point that works well for the industry and allows care providers to have access to the systems 24-7. Hardware is our biggest hurdle to get over. Oculus have been really helpful for VR hardware, but we also need help with the PCs to run it. So we would love to speak to any laptop manufacturers who might be interested in sponsoring our project. It’s getting a huge amount of interest worldwide. We’re also keen to make any connections in the care world.
“The more places we can get the systems in to, the more people we can help.”
This article was originally posted on eurogamer.net
By Dan Pearson