Serious illness isn’t just a medical event. It’s all about the family, too. Likewise, hospice volunteers try to ease a family’s burden, not just the patient’s. Wrote about that for KevinMD.com. You can read it here.
Did you know that today 20 million family caregivers regularly perform a range of tasks for family members or friends? That’s according to AARP. The fact is, many of us are – or will become – caregivers, and that most of us have never been trained to do some of the often complex tasks that will be needed.
Fortunately, there’s more and more online help available to caregivers. So, in honor of National Family Caregivers Month, here’s my latest blog post for Sixty and Me about some of the instructional videos available now:
It’s such a topsy-turvy world right now that if you’re like me, it might take more than a little time spent viewing cat and puppy videos to elevate your mood. So I’m glad to share the story of Embodied Labs.
When I think about the future of health and wellness care for elders, one looming issue is how we can attract a broad and well-trained workforce to understand and help us through a gauntlet of serious illnesses or chronic conditions. So it is enormously heartening to learn about a group of young professionals who have dedicated themselves and their business to this work.
If compassion and kindness are rooted in the ability to “walk a mile in someone’s shoes,” Embodied Labs – which didn’t exist until 2016 — gives that dictum the ultimate technological boost. In short, it sits at the intersection of health care training and virtual reality storytelling.
Embodied Labs is a for-profit corporation, but it is very mission driven, according to Erin Washington, co-founder and head of customer experience. “We’re helping to build the world we’d like to see when we’re older,” she told me, adding that “we don’t consider ourselves a VR [virtual reality] company. We’re using VR because it’s the best solution to achieving the outcomes we’re aiming for.”
Washington’s professional background is in curriculum development. Carrie Shaw, CEO and founder, got her Master’s degree in biomedical visualization (which was once called medical illustration) in 2016. But it was their experience as family caregivers that provided the impetus for creating Embodied Labs.
Shaw tells the story about how she became a caregiver for her mother, diagnosed with early onset Alzheimer’s, and who also struggled with macular degeneration. She created a tool – a simple pair of eyeglasses with patches in two different places – to give her mother’s aides a sense of what it was like to see the world from her mother’s perspective. What if you could use science, storytelling and virtual reality to convey the experience of an aging person? Would that help health care providers, be they professionals, direct care workers or family members, become more effective and better at communicating, in their caregiving efforts?
Embodied Labs uses film combined with interactivity that literally enables a person to walk in the shoes of a person with serious health issues. So far there are three “labs” available to the company’s subscribers: “Alfred,” a 74-year-old African-American man who suffers from macular degeneration and hearing loss; “Beatriz,” a middle-aged Latina woman who has been diagnosed with early Alzheimer’s disease; and “Clay,” a 66-year-old veteran who has been diagnosed with Stage IV lung cancer and faces end-of-life issues and participates in hospice care.
Voice interaction is one element in the Beatriz Alzheimer’s lab. At one point, a person “embodying” Beatriz is asked to read a few sentences; but the words come out garbled and make little sense. It conveys what it might feel like to try to communicate but to be unable to express what you mean.
For the Clay end-of-life lab, Washington’s research included spending two days in a hospice facility, shadowing members of the hospice team. The lab’s credits list 75 people, including actors, those who worked in production, post production and subject matter experts.
Creating a lab is a research and labor-intensive process. Once a topic is decided upon, staff members talk to subject matter experts as well as family members, then decide on learning outcomes they want to achieve. All of that goes into script writing. Then the film is produced.
The Alfred lab, the company’s first, was created by an interdisciplinary team, with content experts from the University of Illinois Chicago, University of Illinois Urbana Champaign, Wake Forest School of Medicine and North Carolina School of the Arts, with representative input from students and experts in the fields ranging from biomedical visualization to geriatrics and health informatics systems. (A white paper detailing the impact of the lab on 200 second-year medical students at the University of Illinois-Chicago in October 2016 is available on the company’s website.)
At first, the company’s subscribers were mostly in academia. But now it has long term care and home health care companies on board. They’re also in talks with nonprofit organizations and with individuals who do corporate training; public libraries and Alzheimer’s groups represent other potential subscribers.
Looking ahead, Washington believes that in 2019 virtual reality will be more available and affordable for consumers, which could be a boon for family caregivers. And while Embodied Labs is focused on aging issues now, the company is looking at experiences of other vulnerable populations too.
“We try to explore difficult subjects, not skills-based training,” Washington said.
So far, the company’s labs have focused on what happens to a person in his or her home setting. The next lab will focus on the transition from living at home to a skilled nursing facility. It will likely include such elements as difficult conversations, the family dynamic, how long-term care can meet a need, what’s different about an institutional setting.
Washington told me that “I would have laughed three years ago if someone had said you’d be starting a company.”
And I’d say, we should all be glad that they did.
You may not know Sandi McCann’s name just yet. But my guess is that by the end of this year, many more of us will know her and the work she is doing. McCann’s aim is to create nothing less than a national movement – training direct care workers to be highly skilled, professional and respected caregivers for elders and paying them accordingly as they learn and going forward.
Here’s why this is at once heartening, important, and challenging:
As our population ages, the simple truth is that more of us are going to need help to enable us to remain in our own homes as so many of us would prefer to do. The Milken Institute School of Public Health at The George Washington University, for one, estimates that by 2050, 27 million of us will need some form of long-term care, more than double the number in 2010.
That will require an army of direct care workers – including certified nursing assistants, home health aides and personal care aides – to help us with the basics of daily living. Not to mention the importance of keeping a watchful eye on us to note troubling changes in our mood, our physical well-being or our mental functioning. It can be difficult, physically taxing work that requires strength, patience and presence of mind in the face of unexpected events or crises.
And yet, ironically, providing direct care for our most vulnerable citizens requires the least amount of training, experiences the highest turnover rate – and pays the least — of the caring professions. As the Institute of Medicine (now known as NASEM Health) first noted in a 2008 report on “Retooling for an Aging America: Building the Healthcare Workforce,” your dog groomer requires more training than that. (And may be paid more, to boot.)
And the work is getting harder. Care has become more complex. Often people are discharged from the hospital or a post-acute rehab facility before they are able to fend for themselves well. The effects of a stroke or dementia can be pronounced and challenging. And unlike long-term care settings, there are no policies and procedures in place to guide caregivers facing challenging situations in the home.
Here’s where Sandi McCann comes in. Her own commitment and passion for elder care grew from her experience as a caregiver for her stepmother, afflicted with Lewy Body dementia at the end of her life. She left a career in corporate marketing and in 2012, she and her sister Maureen started HomeCare of the Rockies, a home care agency in Boulder, Colorado. “I love working with older adults,” McCann told me. “They need to know that they’re heard, loved and cared for. And they need the right kind of care support for that.”
The Idea: A Call to Action
As the agency grew, a serious workforce shortage hindered its ability to serve as many people as it could have. Always supportive of the importance of training, as well as imparting the agency’s mission and values to its team of caregivers, McCann began to closely follow the work of Ai-Jen Poo of the National Domestic Workers Alliance and Caring Across Generations, and the “Fight for $15” movement. She started formulating her own idea for a call to action.
McCann started Caregiver Call to Serve, a subsidiary of HomeCare of the Rockies. Its mission will be to create “a sustainable network of care to help older adults live meaningful lives, not just long ones.”
This year will be its pilot program, providing training to all of HomeCare’s 90-person team and acting as a sort of “incubator” during which the curriculum may be adjusted before it is introduced nationally. HomeCare of the Rockies will own this program fully, and will offer it to other organizations and agencies, offering “train the trainer” meetings.
Key to this initiative is what McCann calls “the triad” – Learn, Earn and Care. The “learn” part of the program includes 100 hours of professional caregiving education, 40 hours of which is online. Forty percent of the curriculum addresses issues of Alzheimer’s disease and other dementias.
The “care” part of the initiative aims to uphold professional standards and the integrity of the caregiving tradition, McCann said.
The “earn” part is what sets this initiative apart. People enrolled in learning will get income boosts four times: after 25 hours, 50 hours, 75 hours and 100 hours of training, to reach $15 per hour. McCann said that that is nearly 40 percent higher than prevailing wages in Boulder.
McCann aims to launch Caregiver Call to Serve in May. It will screen a short video telling its story at a theater in Boulder, to be followed by a Town Hall meeting, all of which will be livestreamed. It has been accepted into the U.S. Dept. of Labor’s ApprenticeshipUSA program – a network of 150,000 employers representing more than 1,000 occupations — and will be working with the Department of Labor and Employment in Colorado to recruit and train caregivers.
There are more than 12,000 home health agencies in the U.S. There are many quite good caregiver and home health aide training programs too and I’ll focus on a few in future blogs. Will Caregiver Call to Serve break through the pack and, indeed, start a movement? I’d love to see it happen, because it’s not a moment too soon.