New technologies are empowering people living with dementia
Erin Washington, co-founder and head of customer experience at Embodied Labs, used her personal life as fuel to help create a virtual reality experience that lets caregivers see what life is like with dementia. Washington and her younger sister, Carrie Shaw (also Embodied Labs’ CEO and founder), were care partners though most of their 20s for their mother, who was diagnosed with early onset Alzheimer’s disease at age 50.
“One thing that we always wondered was, ‘What was this disease like from her point of view?”’ Washington says. “And, if we could experience [that] from a sensory point of view, how could that make us better care partners?”
Family caregivers and professionals and students at long-term care facilities and academic organizations can now experience a snapshot of life with dementia using Embodied Labs virtual reality (VR) technology.
First, users take a pre-assessment about their existing knowledge of dementia. Then, they log onto Embodied Labs’ platform, put on a VR headset and take a six-to-nine-minute journey as Dima, a Lebanese American immigrant living with symptoms of Lewy body dementia and Parkinson’s disease, or Beatriz, a middle-aged woman, as she progresses through early, middle, and late stages of Alzheimer’s disease. Afterwards, users reflect on how the VR experience changes their understanding of dementia.
Washington says people who have undergone the experience often report big improvements to their care practice.
“They better understand why the person [living with dementia] might be irritated or agitated, making them more patient, insightful and understanding in their approach to care,” she says.
Deva World creates a virtual-gaming experience designed specifically for individuals living with cognitive impairment — and it does not require VR headsets. People living with dementia and their care partners can visit Deva World via tablet, where the objects they interact with are specific to the user — music they love can be preloaded onto the record player; artwork they admire is displayed on the walls; even the photos inside the albums are from the player’s past.
As the player and their caregiver interact with the objects in Deva World, real-world connections are strengthened.
“Everything inside the world is grounded on enrichment strategies for well-being that you would expect to get in a high-end care environment,” says Mentia CEO and co-founder of Deva World, Mandy Salomon.
The experiences in Deva World are informed by dementia-care best practices and the goal is to create a sense of agency in the player through interacting with objects and places and seeing the results of their actions. Salomon says the caregiver also gains a better understanding of the person behind the disease.
Careteam is a new type of health-care collaboration platform that brings the user, their health-care providers and personal support team together.
“You see a patient in the appointment room for a few minutes, but what really matters is all these moments in between and what people do with the information provided at the appointments,” says Dr. Alexandra T. Greenhill, founder, CEO and chief medical officer at Careteam Technologies.
Greenhill created Careteam to enable health-care providers to more efficiently coordinate care and support patients between hospital, home and community settings.
The platform securely stores, organizes and updates the user’s care plan and allows them to create a flexible team of people who can all help the user stay on track with their health goals.
The clinical team can share information with everyone on the user’s care team and can track the team’s progress in completing assigned tasks. Staying on track and handling the “grunt work” between visits greatly improves a person living with dementia’s quality of life and gives family members and caregivers a focused sense of purpose.
“An example of this is when a person is first diagnosed with dementia. While they wait to see a specialist, that specialist can send them a list of things that everyone can help with,” Greenhill says. “[Things like] getting the MedicAlert bracelet or a checklist on how to ensure that the house is safe.”
Currently, the platform has been rolled out at four hospitals in Ontario and British Columbia.
When Shaneel Pathak’s wife, Heing, was diagnosed with stage 4 cancer six years ago, he witnessed the power effective information management had on her experience.
“We had a lot of information chaos going on at the time,” Pathak says. “But she was tracking all her information, analyzing it, graphing it, taking photos — and all this helped her, not just to improve quality of life, but also in the treatment decisions.”
Inspired, Pathak and his business partner, Cory Kapser, created HAnalytics Solutions, a Health Analytics platform, in 2015.
HAnalytics’ suite of tools includes an easy-to-use journal module where users and their caregivers can log symptoms, metrics, lab results and side-effects. Pathak says the journal produces reports that can be shared with health practitioners.
“It makes the conversation easier with your practitioner because patient-derived information is readily available, so you don’t have to recall it from your memory, which is what most people do,” he says.
The second component of the tool is a health library application that allows users to bookmark relevant disease information to better understand the best treatment options available for their specific symptoms. The tool can also be used to connect with peers who are also living with dementia to discuss commonalities.
Users can also grant secure access to caregivers for help managing their care. [ ]