Results of novel research into family caregiving presented at the National Home and Community Based Services (HCBS) conference, August 2016

1. SpeakerNotes
Hello, my name is Rajiv Mehta, and I lead Atlas of Caregiving.

2. SpeakerNotes
And this is the spirit which motivates motivates our work — we envision a world where family caregivers are supported and valued as
fundamental to a healthy society; a world where caregiving is easier and more effective than it is today.
And I imagine that most of us in this room are driven by a very similar vision.
I’m here to tell you about our contribution towards this vision. What we are doing is quite different from other organizations, and it may
help to know a bit of background. My colleagues and I generally don’t have a medical, public health or social work background. My
own work has focused on self-care and family caregiving for the past decade, but before that … I studied engineering at Princeton and
Stanford, did research at NASA, studied business at Columbia, and then for many years worked in the tech industry at companies like
Apple and Motorola. You may see indications of this past in the work we are doing at Atlas of Caregiving — thinking in terms of
systems, using technology and design, and grounding everything in close observations of human actions.

3. SpeakerNotes
Our key contribution includes pioneering ways to deeply understand the actual, lived reality of day-to-day caregiving —
Who is actually involved? What do they do? How does caregiving fit into the rest of living? What is the impact? What are the needs?
We’re doing ground-breaking work in combing traditional ethnography with modern sensor technologies, and analysis.
Our approach is humanistic, meaning that we pay a lot of attention to our participants own perceptions.

4. SpeakerNotes
In the course of doing the research, we also discover and develop practical tools that help caregivers better understand their own
needs, and that help the caregiver-support community be more aware of these needs and the impact of their solutions.
These two aspects of our work continuously contribute to and reinforce each other.

5. SpeakerNotes
We also focus on transforming data into action — data from both the deep research and the widespread use of practical tools —
working closely with others supporting caregiving … such as yourselves.

6. SpeakerNotes
Last year we did a Pilot study, funded by the Robert Wood Johnson Foundation.

7. SpeakerNotes
Fourteen diverse families, all within a couple of hours of San Francisco participated. These were some of our participants:
Ida was caring for Ian, who has lewy body dementia along with other issues, and was under hospice care until just a couple of months
before their participation.
Ana cares for a son with depression, while also managing her own cystic fibrosis.
Hanna and her husband Gaston care for her brother Harvey. Harvey requires 24x7 care. Gaston himself has severe chronic conditions.
Overall, the caregivers ranged in age from 30 to 73. Care recipients from 3 to 101. There were a very wide range of physical and mental
illnesses and disabilities. And a wide range of family contexts — demographics, income, etc.

8. SpeakerNotes
We collected data over roughly 30 hours — a snapshot of our participants’ lives — using a variety of means.
This included interviews …

9. SpeakerNotes
… a log in which participants recorded their activities, thoughts, and stress levels …

10. SpeakerNotes
… and several wearable and environmental sensors, as well as a wearable camera.

11. SpeakerNotes
We came up with several new ways to analyze and present the data. This top diagram is a map of a care ecosystem — the people
involved in a particular care situation, from the perspective of the caregiver. We call this a “care map”.
The lower diagram is a way to depict different activities over a 24-hour period, showing different types of activities — caregiving, work,
leisure, etc. — and levels of stress. This diagram made clear how fragmented the days are. This one is of Gaston; hardly an hour goes
by, day or night, when he is not doing something to care for himself (orange) or Harvey (blue).
As you might imagine, neither our data collection methods nor the diagrams were chosen willy-nilly. Many years of experience, and lots
of trial and error, lay behind each selection.
Let me give you some examples of what we saw.

12. SpeakerNotes
This is the care map of Chantal, caring for her mother Debby in her 80s, who has dementia along with a slew of other conditions. Debby
required 24x7 care. Chantal covers most evenings and nights. A paid home care aide Emily generally covers weekdays, and two of
Chantal’s brothers cover the gaps. As you can see, many others are involved at some level, as both caregivers and care-recipients,
including a very important dog.

13. SpeakerNotes
This diagram depicts Chantal’s activities during the time of the study — blue is caregiving, yellow is sleep, purple is leisure — that’s a
yoga class near the end, and grey is normal household activities. The heights of the blue bars indicate Chantal’s self-reported stress
levels. That evening turned out to be especially stressful, as you can see. Her mother seemed more disoriented than usual. Chantal had
to help her brush her teeth, which just reminded Chantal that Debby’s condition was just going to get worse and worse. Chantal’s
husband had also had a rough day at work, and so he too needed caring that evening.

14. SpeakerNotes
Gabrielle was also caring for a mother with Alzheimer’s, 101-year old Karen … but her situation is very different. For one thing, Gabrielle
has much less assistance. On weekdays, if Karen’s condition is okay, she goes to a day-care facility, allowing Gabrielle to work, do
errands, or rest. There are other family members around, but they help infrequently, and usually Gabrielle has to transport Karen to their
homes. On top of this, Gabrielle has her own serious health issues, including sleep apnea.

15. SpeakerNotes
Gabrielle should be sleeping with a c-pap machine, but if she did that, she wouldn’t hear when her mother needed help. As a result she
gets very poor sleep. Here’s some data from that night … the green, blue and red lines are movement measurements, in 3 dimensions,
from a device on her wrist. The black line underneath gives an overall sense of her movement.
Gabrielle said he said she went to sleep at midnight and got up again at 6 am … pretty clear that’s true from the motion data, which
quiets down at midnight … and starts again about 6 am … but can also can see that she had to get up, presumably to care for her
mother, four times that night … which makes for a far from restful sleep. The chart on the right shows the sound level in the bedroom
Gabrielle and Karen share. Oddly this showed that things didn’t quiet down until 1:40 am … turns out she had failed asleep in her chair
while watching TV … she woke up at 1:40, turned off the TV and then went to bed. Driven to exhaustion, and perhaps more aware of
her sleeping difficulties from seeing this data, a few days later Gabrielle hired a nighttime home aide to come four nights a week, so she
could get some proper sleep.

16. SpeakerNotes
Here’s a very different situation … Nadine cares for a teenage son Karl with Type 1 diabetes

17. SpeakerNotes
Nadine also cannot sleep well, having to get up at night to check on Karl’s glucose levels. The night of her participation was especially
difficult, with Karl’s continuous glucose monitor setting off alarms throughout the night. Between going to bed at 10:45, and waking up
at 6:30, she got out of bed six times.
This may have been due to insulin pump’s infusing set getting infected. Anyway, Karl woke up exhausted and grumpy, which then led to
further problems. He didn’t do his normal morning routine as well as usual, and did not fill his insulin pump properly. As he rode his
bicycle to school, Nadine saw on her mobile monitor that his blood glucose level was rising rapidly.

18. SpeakerNotes
Later that morning Nadine is at a meeting, and see his readings continue to rise. She tried to contact him several times with no
success. She then contacted her husband, who contacted the school nurse. Eventually Karl texted from the nurses office, told her that
he was all right and what had happened. Understandably, Nadine had noted high stress in her log during this event. She was
concerned about Karl, of course, but also felt embarrassed at all her phone usage during a meeting.
But when we looked closely at the sensor readings, it seemed that her highest level of stress occurred just before she got to the
meeting, not during all this texting and phoning. What’s going on? We looked at a photo that corresponded to that time, which shows
the building that she was walking into. Seeing the picture brought back richer memories. The peak of the stress may have had to do
more with her awareness of how many things she was juggling — many meetings along with caring for Karl — rather than any one
particular incident. The photos turned out to be very helpful for such deeper reflection.

19. SpeakerNotes
I should take a moment to note that we had a lot of help. People from a wide variety of caregiving, patient-advocacy, healthcare, and
technology organizations contributed time and resources.

20. SpeakerNotes
Though the Pilot only included fourteen families, the results were nevertheless quite powerful.
With valuable insights into the nature of family caregiving, and the resulting implications for services agencies, healthcare, product
developers, and such.You’ll find these in our Study Report.
There’s also a lot of information about our methods, and all the diagrams, on our website.

21. SpeakerNotes
Let me highlight some of the key implications for Healthcare and Social services organizations

22. SpeakerNotes
One of most important findings was that caregivers directly benefited from participation, through becoming much more aware of their
own situation and needs, which enabled to think of new ideas for addressing their issues and empowered them to speak up. They’re
usually so busy just doing-the-doing, that they have little time for deep self-reflection.
This incomplete self-awareness means that health professionals receive incomplete or inaccurate information, so they are less effective
than they could be. It also means that the caregivers themselves may not recognize potentially useful products and services, and so
miss out on the benefits these could provide.
Knowing this, healthcare and social services organizations could take it upon themselves to help caregivers — make them aware of
and teach them to use tools & techniques for improved self-awareness.

23. SpeakerNotes
The fourteen families in the Pilot study showed a wide diversity of needs. Each family was different, and each day could be dramatically
different than the one before. Those hoping to support caregivers must understand this complexity and variation.
One observation was that even “light” caregiving days could significantly impact other aspects of living, such as work, as the
caregiving activities could be spread out throughout the day. Many, small interruptions can play havoc on one’s schedule and
productivity. Another was that complex care is indeed complex meaning that respite cannot be provided by just anyone. The substitute
must understand the situation deeply, and know how to do the full variety of potential tasks; if not, the caregiver can’t afford the risk of
relying on the substitute. Continuity and deep connection to the family is very important for adequate respite.
We discovered the caregiving varied tremendously even across families dealing with the same illness, but also that sometimes families
with seemingly very different circumstances often faced similar challenges. We must resist myopic bucket-izing of caregiving.

24. SpeakerNotes
Text

25. SpeakerNotes
This is a good place to look again at the care map diagram

26. SpeakerNotes
From early in our efforts, we learned that the care map resonated strongly with many people. So, we developed this into a practical tool,
something not just for research but that anyone could use. We developed a methodology for drawing care maps that one can do with
just pencil and paper, and for learning from and acting upon the result. And we published this “how-to” information on our website.
Which drew a lot of attention … including from the Santa Barbara Foundation, in Santa Barbara, California …

27. SpeakerNotes
We were invited to conduct a series of care map workshops across Santa Barbara County this past February. Some of the workshops were for family caregivers,
and some for social workers and care managers. At the workshops, we taught how to draw from care maps, and led discussions about what could be learned
from them. Several local health institutions, care facilities, and social services agencies were involved.
The impact was better than we could have hoped. There was deep engagement and enthusiastic response from participants. We’ve heard that the social workers
have brought care maps into their organizations, and incorporated them into their practices. We’ve heard that the workshop experience has impacted
conversations here about caregivers, and what needs to be done better or differently to serve their needs.
As word has spread about these workshops, we’ve heard from many others about bringing care maps to their efforts. And not just in the US. We’ve also had
serious interest from Canada and Europe.
The Santa Barbara experience also had a big impact on us. We came to appreciate how involving communities in our deep research efforts would contribute to
our own learning, while simultaneously accelerating change. And how working with communities would lead to widespread adoption of practical tools.

28. SpeakerNotes
Which leads to what we are doing now …

29. SpeakerNotes
We will be extending the deep research …
From 14 families over a couple of days, to tens, hundreds, and eventually thousands of families over much longer periods of time.
We are improving our methods — developing and refining the tools and technologies for data collection, analysis and visualization.
And, a critically important outcome, developing metrics for caregiving activities, “burden”, and “impact” so that we can measure the
effectiveness, or lack thereof, of the solutions and services that are developed.
We will be Involving communities ever more integrally in the research.

30. SpeakerNotes
We are also working to accelerate adoption of practical tools — starting with the care map. Building on the experience of the Santa
Barbara Workshops, we are working with organizations to help them learn to use care maps, and to leverage care maps to improve
support. As part of this we are developing a digital care map tool (though we think the paper-and-pencil method will continue to have
great value). And developing methods to analyze care ecosystems, to measure the strengths and weakness of a particular family’s care
map, but also to analyze different populations.
We won’t be doing all this learning ourselves … we are building a community of care map practitioners so that we can all learn from
each other.
To be clear, we expect to make publicly available as much of our work as we possibly can, while respecting people’s privacy. Our hope
is that many will be able to leverage our data, our insights, our tools to make caregiving easier and more effective.

31. SpeakerNotes
Thank you.