The case for Connected Dementia Therapy
In this article, Serge Soudoplatoff and Mandy Salomon, co-founders of Mentia, explore the complexity of dementia, explain why it is hard to deal with and suggest ways of facing it differently.
Dementia: a complex issue
Every three seconds, one person on earth is diagnosed with dementia. In 2021, there are over 55 million people with this cognitive disease, and this figure must be considered carefully as many countries lack accurate statistics. The current trend is around 10 million new cases per year.
Dementia is caused by a range of neurocognitive illnesses of which Alzheimer’s disease is the most common. Dementia is a complex condition because as the brain deteriorates, it’s harder to express what we feel and who we are. Thoughts become jumbled; communication is hard. Everyday tasks are increasingly confusing. Independence is lost, and ultimately, reliance on others is total. Family caregivers struggle to stay on top of our growing physical and psychosocial needs, and often we are moved from our home into long-term care accommodation, where we stay to end of life.
From an economic perspective, dementia is complex, too. It is widely regarded as the costliest of diseases.
- Cost of care: On average, informal caregivers (families and friends) spend 5 hours per day providing care. The hidden cost of care in the US, alone, represents some $256 billion per year.
- Health costs: People with dementia often have a range of other age-related illnesses, but their capacity to manage these and communicate any changes is well below those of cognitively healthy patients. In the US, the difference of cost of comorbidities is huge between patients with or without dementia.
Thinking digitally to help manage these complexities is at the core of our work. But there is complexity for we innovators too. At Mentia, we are building tools that create a new kind of care: We call it ‘Connected Dementia Therapy’ (CDT), the term describes the transition of the world’s best offline wellbeing and therapeutic strategies, grouped together as ‘non-pharmacological interventions‘ into online ones for a better quality of life and data-supported measures that quantify its value.
Non-pharmacological Interventions
In essence, non-pharmacological interventions corral a range of strategies that help people to live optimally with their dementia. Well-known ones include music and reminiscence activities, physical therapies such as exercise and dance, activities that relate to everyday life, like cooking, gardening and fixing things, and sensory activities like massage or aromatherapy.
Technology-enabled activities such as virtual reality experiences, kinetic games and social robots are joining group. Exciting though these new interventions are, I argue they are not intrinsically disruptive because they simply add to the range of activities without changing processes, whereas the true nature of digital disruption is to transform the underlying work process to create new value and efficiency.
This latter is our approach.
Delivering Connected Dementia Therapy
Digital therapy is flexible, extensible, scalable, repeatable.
Like precision medicine, digital therapy is tailored to individuals, delivering true person-centered care.
Digital therapy upskills care workers, transforming personal care staff into dementia care specialists. Highly-trained specialists, like occupational and music therapists are in short supply, and for those living at home, allied health services may be unavailable or unaffordable. Digital versions of these services mean non-specialists can use them, upskilling while they work.
Digital therapy simplifies logistics. Instead of taking people to a museum, or to a horse paddock for equine therapy, the activities go to the person. We are currently undertaking clinical research to build upon what we have noticed anecdotally: that virtual experiences can be just as powerful as their actual counterparts.
DevaWorld: a novel virtual world for wellbeing
A Platform
DevaWorld is a platform comprising a dementia-friendly virtual world built with a game engine and a dashboard for customization. Via a back office, they create feedback loops to support participants, caregivers and administrators, simultaneously.
Co-design
DevaWorld’s follows human-centered and universal design principles, which explains its acceptance by a wide range of users. Codesigned with (not for) people living in a memory care unit within a residential care home, DevaWorld embraces the mantra: “Nothing about us without us” (Nihil de Nobis, sine nobis), which grew out of the disability rights movement of the 1980s.
Agency
DevaWorld lowers the barriers to engagement by reducing the number of cognitive steps in an activity and by cueing through an interactive graphical interface. For example, music starts by tapping on the record player. Therefore, the music is the consequence of an action that may no longer be managed in the actual world. In DevaWorld, everything is accessible and failure-free.
Priming
DevaWorld’s virtual activities of daily living enable caregivers and care recipients to prepare and rehearse (‘priming’) before undertaking the actual task. We observed that performing activities inside DevaWorld are reducing anxiety and have a positive impact on real world ADL completions. We recently received a grant to measure this through a clinical study.
Person-centered
Customization is easily managed via a dashboard. Meaningful digital artefacts, such as photos or videos, appear contextually inside the world, and are unique to each person.
Expansion
Like the video-game, The Sims, DevaWorld is ever-expanding. Without the constraints of bricks and mortar, there is always room for new therapies or activities.
Community
Family members, friends or caregivers are part of DevaWorld. They can upload meaningful content, run sessions with loved ones, and follow their person’s progress.
The difficult path to digital transformation
Amongst all service sectors, healthcare is the last to embrace the digital revolution. Why so? Even the conservative banking world is adopting blockchain, a highly disruptive technology. Here, briefly, are three reasons why health sector is so late to the digital party — we’re sure you can think of more!
1. Managements are slow to embrace new systems when everyday challenges such staff turnover, small margins and changing regulatory frameworks are front of mind.
2. When it comes to data sovereignty and privacy, legislation is strong. To be compliant, servers must be hosted in different countries. (We have a server in France for the European market, in Australia for the Australian market and in Canada for the North American market.)
3. Fear of the facts. The digital world is a place of multiple truths, echo chambers, shammers, scammers, hackers and opportunists. As the COVID pandemic shows us, science and evidence-based research compete for attention in an increasingly mirky pond of dis-information.
Senior care is a subset of healthcare, and dementia care is a subset of that. It will take time and patient investors, managers, staff and consumers to bring digital adoption rates to levels where much-needed transformation occurs.
To conclude, the path to digital dementia services is a difficult one. But by working hand-in-hand with dementia communities, we at Mentia are beginning to understand the process.
Here are some pointers for digital adoption that we have devised these from our own experiences and observations.
· Don’t convince, but find the convinced. Many people have good reasons to not jump in the unknown, while some others love this. Find the ones who are willing.
· Create a community of those early adopters. They are happy to be together, to share their early experiences. Create the proper tools to manage this community; it is cheap and easy.
· Play on virality. Follow the “crossing the chasm” principle: the early adopters will open the door to the early majority. Late majority will follow, and the laggard will either move on, or disappear.
· Training is key: train care staff to think digitally about dementia and the new rules of a digital world.
· Do it step-by-step; digital transformation takes time, it can be exhausting, and has many many roadblocks.
· Be under the radar until you have tangible results. Being known too early can kill a transformation project. Don’t forget that success has multiple fathers, but failure is an orphan.
· Manage by trust, not by reports.
· Finally: “Leaders write manuals. Followers read them”. Hire the proper people through their capacities; not their diplomas.
The promise of digital dementia care is greater dignity, happier people, and better and more efficient care. Age Tech is not for the feint-hearted but for sure, the move is on.
