Dementia care services are breaking. It’s time to bring connected digital tools to the point of care.

14 min readJul 3, 2019

(This is an extract from Mentia’s white paper ‘Tao of Dementia Care’: Dementia Care in a Connected World’, available on the Mentia website)

There’s a supply/demand crisis in dementia care. There are more people with dementia, fewer people to care for them, and the costs of services are spiraling. To manage the increasing prevalence of dementia we need new ways to resource and scale high-quality care. How will we do this? By transforming offline services into online ones. Stay with us for a few minutes while we scope the new category of services we call Connected Dementia Care (CDC) for better, more enjoyable, and more efficient care.

Heads up: The authors have skin in the game. We produce one of a new breed of digital tools that are transforming dementia care. Our system, Deva World™, augments communication between people living with dementia and those who support them. We’ll refer to it by way of an example as we take you through the CDC blueprint.

1. Setting the scene

With one person on the planet being diagnosed every three seconds, dementia touches more individuals, families, communities, and nations than ever before. Within thirty years, an expected 130millions of us will have dementia and an estimated $2 trillion will be spent on our care. One of the biggest shifts is occurring in low-income nations, where people are living longer than before.

Dementia’s increasing prevalence is a story well-told by health authorities. Almost daily, media groups report on the anticipated ‘tsunami’ and pose questions about how society will cope. But behind the dramatic statistics and search for a curative treatment lies a person’s private struggle to think, reason, remember, be safe and simply function. Here’s how Christine Bryden, who has been living with dementia since 1995, poignantly describes it:

2. The toll on families

Family and friends play an essential role in our dementia journeys. In North America, some 15.5 million are currently caring for 6 million people. With both high and low-income countries throughout the world struggling to provide services to their ever-growing elderly populations, families and extended households continue to provide unpaid care.

Our efforts save governments billions but, equally, productivity, in the broader sense is lost. AARP (USA) estimates that 9.5 hours per day are spent actively caring for a loved one, equating 18.8 billion hours of unpaid care annually. If we put a $15 value on every hour spent, families are contributing $282-billion of unpaid care, often at great cost to themselves.

Unfortunately, we do not currently measure the quality of family care at home. Disturbingly, the National Institute of Health (NIH) found that most family caregivers lack the information they need to manage the care of a loved one. And caregivers commonly overlook their own wellbeing, becoming isolated, stressed and depressed, leading one landmark study to describe them as “the invisible second patient”. Given people’s overwhelming preference to age in place and the complex path that both members of the care partnership must navigate to do so, savvy care providers ought to be considering the wellbeing of entire families not just the traditional ‘client’.

By thinking digitally, entrepreneurs and intrapreneurs have limitless opportunities for new high-quality services that meet the diverse needs of aging populations. When digital tools are used, the size of the digital pie doesn’t diminish, no matter how many times it is consumed. Further, the digital trace of usage produces data that organizations can use to improve efficiencies and demonstrate value to their private and public payers.

3. Introducing Connected Dementia Care (CDC)

The new category of dementia care we propose ‘Connected Dementia Care (CDC)’, captures the idea that knowledge, resources, and experiences, by virtue of connectivity, flow. Many industries and services sectors know this, but health — and its subset, aged care — lag well behind.

However, this is changing; a quick audit of digital technologies and practices indicates that a ‘Care Renaissance’ is upon us. Though uptake is slower than many innovators would like, digital tools to help people live well with dementia are weaving their way into the long term care system; many of them are powered by AI, with robotics and voice-enabled services amongst them.

-Early detection apps
-Music therapy apps
-Life story apps
-Brain health apps
-Sensors that detect falls and location.
-Reminders, alerts, maps and smart calendar systems for activities of daily living
-Communication apps that connect families and friends
-VR armchair adventure and travel
-Robotic pets that purr and swoon when touched.
-Voice-activated services

The energy in the digital health space, illustrated by some $11Bn invested in 2017, is being fueled by the FDA’s recently defined ten criteria for digital health and digital therapeutics. Apps for addiction, diabetes, and autism now bear the FDA stamp, and it’s only a matter of time before dementia apps join the party.

Here’s a map of the Californian ecosystem of connected senior care, created by aged care consultant, Karen Coppock.

Connected Senior Services in California. May 2018 © Karen Coppock

4. Transformation drivers.

We’ve identified 8 drivers. We’ll use our own product, Deva World, for context.

Codesign
Codesign has long been a part of user experience (UX) design philosophy; however, only recently has there been a focus on how cognitively-challenged people might contribute to software development. The catch-cry ‘nothing about us without us’, enshrined by the disability movement in the 1980s, is now a founding principle of advocates working de-stigmatize dementia. Many advocates are themselves living well with the condition. CDC honors the principle, for, without inclusive design, people impacted by dementia are unable to do-the-doing, and, instead, are ‘administered to’.

For Deva World, Mentia developed an iterative co-design methodology, termed ‘Creative Engagement’. This system enables people with significant dementia to participate from the get-go. Mentia has also developed an instrument tool measuring digital engagement, which allows those participants to evaluate the developed technology, thus closing the design feedback loop.

2. AI
When the Internet arrived, information became available everywhere at low cost. Then, Web2.0 made knowledge available everywhere at low cost. Now, with the rise of artificial intelligence, expertise becomes available everywhere and at a low cost. Introducing AI into Deva World enables a deeper understanding of participants’ needs, delivers culturally relevant just-in-time content, makes smarter suggestions and responses, and enriches services to providers.

3. Scalability
A characteristic of the digital age is the capacity to scale any activity and have it available to users anywhere, anytime, on any device. Content is cloud-based. Open APIs integrate it to other digital systems such as management programs and electronic health records. Silos come down. Scaling also reduces the need for external resources; for example, there may be no opportunity to prepare for a special day on the calendar. With Deva World, digital and media artifacts can be pulled from the internet straight and placed into an interactive scene.

4. Intangible Economy

When we share a tangible good, it divides. When we share an intangible good, it multiplies. Digital transformation moves an economy of scarcity to an economy of abundance. Deva World gives in-demand creative and dynamic therapists, whose actual presence is sought, the opportunity to amplify their presence and support geo-diverse communities across time zones and at times that suit participants. No more the notion of therapy by-appointment. Therapists would need to respect the platform’s protocols however rules are not designed to be restrictive but simply effective.

5. Community
In the digital age, “horizontal” relationships inside communities are blossom through connections that self-propagate around spheres of interests and the sharing of knowledge and resources. As we build out Deva World, it will become a network for sharing ideas and experiences. For example, one community’s decision to create a place of worship can benefit other communities that share the same faith. Veterans, LGBTIQ groups, and why not people with a predilection for Latvian folk dancing can each be accommodated by visiting culturally-specific places that other like-minded folks have already commissioned. Indeed, there could be a payment model whereby original ‘world builders’ can be reimbursed by those who want to visit.

6. Finding the early adopters
Whenever digital transformation occurs, there are some for whom the switch is not easy. Care staff who are reluctant to try new products may be weighed down by past failures, out-of-date devices, inconsistent Wi-Fi, or hardware that is locked away in cupboards and forgotten.

Providers who are prepared to put some skin in the game — like, appoint a dedicated champion and hive off some dollars for the startups, too — they are more likely to have a successful trial on their hands. In the case of Deva World, we found that when residents themselves were at ease, staff realized that, after all, going digital is not so bad. Resident-led acceptance could be the driver for workplace change, generally, and help accelerate wider shifts, say, from paper-based rosters, records, and handover to digital ones.

7. Training and education
Digital tools often give caregivers an opportunity to extend their practice because knowledge is embedded within the tool. Deva World, for instance, mirrors real-world activities of daily living, which, in turn, reinforces actual world care strategies. Care companions learn while doing.

8. Scientific research
Our preliminary observations show that when a player is walking, playing the piano, and trying on clothes in Deva World, their extra-world communication is also enlivened. Why is this so? Which parts of the brain are being recruited? Digitally-based systems collect data that can be used to better understand the cognitive impact of certain activities on the brain over others. As knowledge develops, these activities could be finely calibrated to each individual, just as precision medicine within the bio-clinical field does. As cloud-based platforms grow, so, too, does data, leading to fresh insights into how best to optimize cognitive function.

5. How digitally-delivered therapy is different

While digitally-delivered therapies do not have the full dimensions of physical world experiences (although sensory and immersive experiences are on their way), they have distinct characteristics, which, when well designed, can overcome limitations of their physical world counterparts:

· Personalizing and customizing care

As Dawn Brooker, the noted British authority on dementia care quipped, “person-centered care is easier to talk about than to achieve”. Personalized activity programs are costly and resource-heavy. In the digital space, however, costs are low, and activities can easily be customized to meet individual preferences; for example, activities for residents who prefer not to be part of a group activity, or finding content that holds special meaning.

· Scaling skill sets

In traditional recreational/lifestyle activities, a trained therapist needs to be involved, and sessions tend to be organized by roster. Volunteers and aides may not have sufficient training to run these activities, nor is delivering them considered to be their role. Certified nursing assistants (CNAs), too, are out of the activities loop given their focus on medical-related tasks.

On the other hand, digitally-based therapies can do the heavy lifting so that lesser skilled helpers be meaningfully involved. The tool itself can embed a training component that up-skills care partners. Efficiencies can be built around data collected during sessions, such as duration times and interaction levels; these indicators can be sent to care circles to promote family communication and to deepen a provider’s understanding of systems of care and client wellbeing.

· Managing the logistics

Taking a memory care group on an outing, say to a museum, requires considerable organization. Several staff members must accompany the group, who may have a variety of physical challenges including the ability to walk or sit comfortably. Numbers are limited to the capacity of the bus. For some, travel can provoke anxieties. Then, the gallerist must choose the right painting, know how to draw out stories from the participants, and so on. A virtual gallery, on the other hand, can mimic the experience, provide close-up details of the work and suggest different pathways for interaction.6. Translating offline engagement to online engagement in the world of CDC

It is disturbing that the digital world offers we healthy-others a plethora of customizable apps to extend our online identities yet sets adrift those who need help to amplify their sense of self. For people who critically need support on that front, the tech world turned its back. By leveraging best practice dementia-friendly design thinking with cloud-based functionality and mobile devices we have the foundations for new engagement. Here are some other principles:

Ethic

The same ethical pillars that underpin non-digital dementia care must also apply to its digital counterparts. The complicated bit is understanding how to translate ethic into an app: keeping core values, while at the same time, incorporating the characteristics and possibilities that digitally-based systems offer. In the following list, we go beyond administrative and regulatory issues like HIPPA compliance and consider the broader ethic stemming from the belief that the person (not the provider, nor a system) comes first.

● Person-centered care: recognizing the full spectrum of an individual’s needs, including their psychological, emotional, spiritual and social needs, rather than focusing on the neuropathology.

● A person’s sense of self: amplifying the “I am” which exists but may be difficult to express

● Relationship-centered: keeping the connections between people and things alive to combat isolation

● Meaningful and purposeful occupation.

● Living well: living optimally, albeit with a disability

Usability

· A CDC is an experience rather than a service

· A CDC is designed for doing, not merely for viewing

· A CDC supports participants’ individual psychosocial needs

· A CDC is the outcome of participatory design so that the product mitigates the impact of reduced cognitive function and other commonly experienced age-related conditions

· A CDC is a digital native in the sense that connection is inherent to its design as compared to merely replicating a non-digital activity and then redistributing digitally (e.g. a card game).

· A CDC is informed by non-digital engagement activities organized specifically for people with Alzheimer’s and other related dementias

6. Translating eco-psycho-social approaches to wellbeing from offline to online

Dementia undermines a person’s confidence and self-esteem, however, as Tom Kitwood, the pioneer of modern-day dementia care pointed out in the 1990s, if these essential human needs are supported, a person can live relatively well despite their dementia. But he was quick to point out that it is we healthy others who must step up and assist those impacted.

Let’s look at some well-known wellbeing strategies: Music and reminiscence activate areas of the brain that are less prone to deterioration, triggering happy memories that can be shared. Physical therapies including exercise and dance increase blood flow to the brain and produce endorphins that energize us and improve our moods. Occupational activities like gardening and cooking bring a sense of purpose. Sensory activities, which might include massage and aromatherapy, stimulate embodied memories, like a mother’s touch; these often stay with us to the very end of life.

This is where things get tricky. While there is abundant evidence that tailored activities that promote meaningful engagement contribute greatly to a person’s wellbeing, supplying them can be a challenge. People, things, and places are needed — and, with the best will in the world, families and care providers, can fall short because they don’t have the necessary resources.

At Mentia, our digital approach is to capture the essence of these activities and deliver them in a way that is acceptable to users. However, as newspaper publishers found when they transitioned to online news, a facsimile of the traditional version is not enough. Digital therapy is not simply a new intervention, it brings systemic change, and care providers need to manage structural challenges when they decide to do things differently.

7. Summary

Like the technology outcomes of the historical Renaissance, printing foremost amongst them, innovation destabilizes old systems and methods. To providers looking outside their legacy systems, we say: please open the door to innovators who come knocking. Senior-tech startups need senior-care providers to lend support, and that means dollars as well as time, for without such help, new solutions will fail and the rate of change will slow. Innovators need champions.

Boomer-agers, many of whom are digitally literate, are demanding a different aging experience to that which their parents (often) endured. New tools are needed not only to meet their greater expectations, including the preference to age-(well)-in-place — but also to fill holes made by a shrinking caregiver workforce. Fortunately, CDC technologies are driving much-needed change.

CDC embodies all the features of a digital Renaissance, causing, on the one hand, instability and fear, and on the other, enlightenment:
- CDC distributes expertise everywhere and at low cost
- CDC services are abundant, not scarce
- CDC opens new design, teaching, and knowledge pathways.
- CDC breaks down silos: CDC activities flow; they can’t be contained by bricks and mortar.

And that’s pretty much it. The ‘Tao of Connected Dementia Care’ is the ‘way’ forward, in a world where dementia care solutions must transform if we are to meet the challenges of cost and care that lay ahead. Thanks for reading!

8. About the Authors

Dr. Mandy Salomon is an entrepreneur working at the intersection of creative media, human-computer interaction and cultural gerontology to build next-generation tools for people living with dementia and those who support them. She received her M.A. and Ph.D. at the Swinburne University of Technology in Melbourne (Australia) for work on inclusive design for people with dementia, and for developing digital systems that enable them to participate. While there, she conducted studies that showed the acceptance of 3D virtual worlds for people living with dementia and the psycho-social advantages of using them. Stirling University’s Dementia Services Centre (UK) selected Dr. Salomon’s research for ‘Ideas today that will impact tomorrow’ award, describing her work as ‘digital empathy’. She was also the recipient of the Smart Services Cooperative Research Centre’s CEO award for Best Ph.D. Dr. Salomon also holds a BA in Drama and Visual Arts and brings a large body of work from theatre and media production to her practice. She is a Research and Industry Fellow at Swinburne University, a member of Creative Aging San Francisco, and an Alliance member of Aging 2.0.

Serge Soudoplatoff is an authority on digital transformation. He teamed up with Salomon as CTO to bring fresh eyes to dementia care through a combination of creative thinking and technological know-how. Soudoplatoff trained at École Polytechnique, Paris, in computer engineering and mathematics. He is a regular contributor to the French think-tank, Fondapol. His recent monographs are on the topics of digital health, artificial intelligence, and the blockchain.

The author’s peer-reviewed papers on digital transformation are available at http://swinburne.academia.edu/mandysalomon http://www.fondapol.org/etude/le-numerique-au-secours-de-la-sante/ ; http://independent.academia.edu/SergeSoudoplatoff.

Mentia was born in 2017 and is a portfolio company at Launchpad Digital Health in San Francisco. The focus of Mentia’s work is to apply innovative technologies to solve the large-scale senior care challenges: scaling expertise and up-skilling care staff for better health outcomes. Please visit www.mentia.me to learn more about Mentia’s product, sales and partnerships.