Results of novel research into family caregiving presented at the ASA Aging in America conference (March 2016)

1. ASA Aging in America Conference!
Caregiving 2.0: Innovative Directions in Data and Service Delivery!
21 March 2016!
Rajiv Mehta
rajiv@bhageera.com
650 823 3274
Speaker
Notes
Hello! I am Rajiv Mehta, and I lead a project called Atlas of Caregiving. I am also on the board of the Family Caregiver Alliance, which is managing
the effort. And the project is supported by a grant from the Robert Wood Johnson Foundation.
You may ask: What is an atlas of caregiving? Is it a collection of road maps for caregivers? Does it show the terrain of caregiving? As you’ll see,
these metaphors fit pretty well.

2. Need: Much richer understanding of family caregiving!
❖ Society, including healthcare,
depends on family caregiving
❖ But … relatively little data
❖ What are the needs? What are
the solutions? How to judge
value?
❖ Atlas of Caregiving exploring
new ways to look
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As you probably know well, family caregivers, not health professionals, do by far most of the work of care. Unfortunately, like the lower portion of an
iceberg, is is often unseen. Although society, including healthcare depends on family caregiving, we have relatively little data about it.
We know it is huge—that there are tens of millions of American caregivers, with hundreds of billions of dollars in lost wages, and other impacts. We
know we must do something about the caregiver crisis. But we lack detailed data, without which it is difficult to create great solutions, or to evaluate
their impact.
The Atlas of Caregiving explored new ways to study family caregiving.
Speaker
Notes

3. Capture caregiving details!
❖ Actual lived experience of day-to-day family caregiving
❖ Who is involved? — Family, friends, professionals …
❖ What are they doing? — Caregiving & rest-of-life
❖ What is the impact? — Time, stress, physical demands, distraction, …
3
We wanted to understand the details of day-to-day caregiving: exactly Who is involved? What are the things they do, and how does it fit into the
context of their lives? Ad what is the impact of all this effort?
Speaker
Notes

4. “Atlas” aspirational; current effort a pilot!
❖ What can we learn by looking in new ways?
❖ Ethnography (interviews & self-reports)
❖ Wearable and environmental sensors
❖ New visualizations
❖ What can we learn about new ways of looking?
❖ Is this useful? Does it lead to new learning?
❖ How practical is this?
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I should note that the idea of the Atlas is aspirational, that someday there might exist a rich compendium of information about family caregiving. For
now this initial effort is a pilot, to learn how we could achieve the larger goal.
We are using a novel approach to studying family caregiving—combining traditional ethnography with new sensor technologies and new ways of
visualizing the resulting data.
We are evaluating both what can we learn by using this new approach, and whether this new approach is useful and practical.
Speaker
Notes

5. Ethnography + Technology!
❖ Interviews
❖ Logs
❖ Narrative Clip — camera
❖ Empatica E4 — biometrics
❖ Netatmo Weather Station — environment
❖ SmartThings — motion detection
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We collected data from participating caregivers, over a period of 24-30 hours spread over two days, using multiple approaches.
There were deep interviews at the start and end of the period. They kept a written log of all their activities, caregiving and other, as well as their
perceived level of stress.
We used two wearable sensors. A Narrative Clip camera which automatically takes a photo about every 30 seconds. And an Empatica E4 on their
wrist which captured motion, heart rate, and something called skin conductivity, which can be analyzed to measure emotional arousal (like stress).
There were also two environmental sensors placed around their homes. The Netatmo Weather Station captured temperature, humidity, and noise
and CO2 levels. And SmartThings Motion Sensors captured movement in the home.
Speaker
Notes

6. Participants:14 families near San Francisco!
❖ Caregiver ages 30–73; Care recipient ages 3–101
❖ Wide variety of health conditions
❖ Alzheimer's, autism, cancer, diabetes, epilepsy, Parkinson's, XYY, …
❖ Wide variety of family contexts
❖ Parents caring for young & adult children; spouses of many ages caring for
each other; young & old adults caring for parents ...
❖ Isolated caregivers to Well-supported caregivers; Urban to Semi-rural;
Well-off to Just-getting-by
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We had 14 families, a total of 19 people, participate. They were a diverse group. Caregivers ranged in age from 30-73, and care recipients from
3-101. They had many different conditions; some had multiple issues. There was also great diversity in social and living conditions.
Speaker
Notes

7. Example: Chantal cares for her mother!
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Let me show you a little bit of what we learned from one of our families. Over the past six years, as her mother’s health has worsened, Chantal has
devoted ever more of herself to caring for Debby. (These aren’t their actual names.) She has relocated her home, changed jobs, moved from full-
time to part-time employment and eventually resigned, to do what must be done.
Debby has a wide range of diagnoses. Chantal named eighteen conditions, including dementia, hypertension, atrial fibrillation, fractures, and
arthritis. She needs 24x7 care, and has been in-and-out of hospice care in the past year.
Speaker
Notes

8. 8
Care map!
This diagram shows Chantal’s care map, from information collected in the interviews. It shows all the key people involved in her situation. As you
can see, the core group includes: Chantal who cares evenings and nights; Emily, a paid assistant, who covers days; and two of Chantal’s brothers
who cover the gaps, about 2-3 hours each day.
Chantal herself gets emotional support from Emily, who has a lot of caregiving experience, her husband, online friends, and her dog—who is
apparently brilliant at knowing who needs cuddling, and is very much a part of the caregiving team.
Such care maps have turned out to be a popular and powerful tool, and we have developed a method for people to draw their own using just
paper and pencil. But that’s a story for another talk.
Speaker
Notes

9. 9
Activities!
This diagram was created by information in Chantal’s log, corrected and expanded by data from the Narrative Clip and Empatica E4. The bar chart
on the left shows the amount of time she spent on different types of activities. The blue shows 6.5 hours of caregiving activities, with different colors
(and heights) representing different levels of self-reported stress. Those care activities are further broken down on the right. You can see that in the
roughly 24 hours of her participation, she also spent 1.6 hours on leisure (mainly a yoga class), 6 hours on sleep, and 4 hours on other activities.
Obviously, as the numbers don’t add up to 24, there were many things not recorded.
Counting is a messy and inexact business. Many things overlap. And somethings are just hard to categories. For example, Chantal’s caregiving
shift was 6 pm to 8 am, which is 14 hours during which she really couldn’t do much else. So should that count as 14 hours of caregiving? Granted
there were times she was sleeping, or reading a book, but if she didn’t have to be there, perhaps she would spend her time differently.
Speaker
Notes

10. 10
24-hour view!
9am–9am!
This diagram gives a better sense of how fragmented her day was. It shows all the logged activities from 9 am on the first day of participation, to 9
am on the second day. You can see Chantal’s caregiving shift starts at 6 pm, and that it was an eventful evening. Chantal noted in her log that is
was her “worst day ever”. This was mainly an emotional response to slight changes — her mom needed helping brushing her teeth for the first time
— but it drove home the reality of her mother’s ever-worsening situation. You can also see that Chantal’s 6-hours of sleep was interrupted as she got
up to check on her mother.
Speaker
Notes

11. 11
Body!
sensors!
Movement!
Skin Conductivity!
Heart Rate!
This shows the data from the Empatica E4. The top graph is of motion. You can clearly see the she slept—the relatively quite period in the middle of
the chart.
The middle graph is an analysis of skin conductivity, which to some extent shows emotional arousal. The big numbers, the blue hill, in the middle of
the chart corresponds to the evening when she caring for Debby, so the measured values fit quite well with Chantal’s self-reported times of stress.
The sharper hill near the right side is her yoga class. Turns out yoga is also emotionally arousing, though in a positive way.
The bottom graph is of heart rate, which is also useful in judging the times and quality of sleep.
Speaker
Notes

12. 12
Images!
These are a selection of images taken by the Narrative Clip. To you, and to us researchers, these may seem meaningless, mundane images. But to
Chantal, they helped her remember more clearly what she was doing and feeling at those times. She told us of all the time she had spent that day
organizing her mother’s health records and updating her health history. This is something she does every so often, to have it handy when some new
doctor needs to know.
Speaker
Notes

13. More case studies online!
!
AtlasOfCaregiving.com/studies!
You can go online to see Chantal story and diagrams in more detail. As I mentioned there were 14 families, and so there will be 14 case studies. A
few are already online, and the rest will be posted over the next few weeks.
Speaker
Notes

14. Findings: Methods!
❖ Value of approach confirmed
❖ New data, new insights … not possible with traditional approach
❖ Combination of methods (ethnography + sensors + visualizations) much
more than sum-of-the-parts
❖ Improvements
❖ Very labor-intensive ! more technology for data processing and analysis
❖ Improved visualizations possible
❖ Rapidly improving sensor technology bodes well for future efforts
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So, what have we learned from all this?
First of all is that this new, multi-modal approach to caregiving gives us great new data & insights, that are simply not possible using traditional
techniques like surveys and focus groups. Also, though each individual tool was more or less useful, it was the combination that was powerful.
On the other hand, what we did was an enormous amount of work. To make this practical, so that we can study many more families and so others
can do similar work, we are going to have to invest in more technology for data processing and analysis. At the same time, we are very optimistic
as there are significant opportunities for improvement in both the sensing technologies and the visualizations we create.
Speaker
Notes

15. Findings: Family caregiving!
❖ Participants found value, and satisfaction, in self-learning
❖ Caregivers not fully aware of the extent of their caregiving activities
❖ Almost always more people involved, sometimes a lot of people
❖ Complex choreography plus contextual knowledge make respite difficult
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The pilot was small, and so we weren’t expecting to be able to make brand statements about tens of millions of caregivers. And yet, combining our
findings with the team’s deep background allows us to make some statements with confidence. I’m going to cover these briefly. You can read our
report for much more depth.
• A key point is that caregivers themselves would benefit from learning about themselves. Most of our caregivers were surprised by what they saw
in their own data. One person thought she’d spend 2 hours on self-care; it turned out to be 6. Another realized that she did not need to feel guilty
about being tired! • This is because they are so busy doing the doing to be fully aware of all that goes on. • Though we often speak of the
caregiver and the care recipient, there are almost always more people involved, like in the care map you saw. • And, as desperately as people
need respite, providing it in a way that actually makes people’s lives better is not easy. Whoever steps in has to have a deep appreciation of the
situation and people. Long relationships are really important.
Speaker
Notes

16. Findings: Family caregiving (cont.)!
❖ Caregiving involves constant change, sometimes dramatic
❖ Defining the caregiving experience by disease / condition / age is myopic
❖ Caregivers often too overwhelmed to avail themselves of potential assistance
❖ Caregiver stress involves more than just stress events
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• Even within the small window of time that we looked into these people’s lives, things changed, sometimes dramatically. • People with the same
conditions had very different experiences. We had several families dealing with dementia, and also several dealing with Autism-Aspergers. The
situations and needs varied significantly. We also had families with very different diagnoses, demographics and social conditions, who nevertheless
were dealing with the same issues. • Caregivers are often so overwhelmed, that asking them to research, obtain, learn to use, evaluate, and debug
potential solutions may be asking the impossible. • Finally, stress is much more complex that just difficult tasks like home IV treatments and
incontinence assistance. Simply counting the hours spent on caregiving, or judging the severity of illness, is not a good proxy for stress.
Speaker
Notes

17. Implications for all those involved!
❖ Family caregivers (themselves)
❖ Product developers /
entrepreneurs
❖ Caregiver support organizations
❖ Employers
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❖ Healthcare professionals and
institutions
❖ Policy makers
❖ Researchers
❖ Foundations
These finding have significant implications for family caregivers themselves, and for all those who are trying to making family caregiving both easier
and more effective. I’m only mentioning this for now; you can read the details in the report.
Speaker
Notes

18. AtlasOfCaregiving.com
Thank you!
Rajiv Mehta
rajiv@bhageera.com
+1 650 823 3274
As I said , we will be publishing all our case studies, as well as details on the methodology, findings and implications. You’ll find this information on
our website (atlasofcaregiving.com), and we plan on publishing the final report by the end of April. You can also go on the website to leave us your
name and email if you would like to be notified when we publish.
Thank you. I look forward to your questions and comments.
Speaker
Notes