Rajiv mehta outfitting families for caregiving journeys
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Rajiv mehta outfitting families for caregiving journeys

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When outfitting an expedition, one has to plan for everything: from the rare but potentially catastrophic dangers (raging lions, swollen rivers, thunderous storms) to the mundane, commonplace ...

When outfitting an expedition, one has to plan for everything: from the rare but potentially catastrophic dangers (raging lions, swollen rivers, thunderous storms) to the mundane, commonplace annoyances (fleas, thorns, thirst, hunger) that can be just as deadly. Caregiving is also often a long and difficult journey. There are harrowing crises mixed in with the mundane challenges of everyday caregiving. Both can be overwhelming, but the latter has been neglected. We can and must do better in outfitting caregivers — with technologies, services and support — for all aspects of their journey.

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Rajiv mehta outfitting families for caregiving journeys Rajiv mehta outfitting families for caregiving journeys Presentation Transcript

  • Slide! Prepared Remarks! Thank you …! ! I am very pleased to be participate in this Aged Care Informatics conference to talk about outfitting families for caregiving journeys. I was invited to the HIC 2012 to give a talk tomorrow on the broader issue of the future of healthcare. Very exciting. But, this sub-conference is of deep personal interest, as you will see.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 1
  • Slide! Prepared Remarks! I’d like to start with a magazine article from 1931...!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 2
  • Slide! Prepared Remarks! in which Major Fiala tells us about equipment for a different kind of journey, for the exciting and dangerous expeditions that took place in the age of exploration.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 3
  • Slide! Prepared Remarks! He tells us about the specialized equipment required for such expeditions. For example, scientific instruments … after all science and knowledge were the underlying motivation, or excuse, for these adventures.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 4
  • Slide! Prepared Remarks! Acknowledging the dangers involved, Major Fiala stresses the importance of weaponry to fight enemies big …!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 5
  • Slide! Prepared Remarks! and small.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 6
  • Slide! Prepared Remarks! He’s happy to furnish you with some really expensive equipment as well, such as boats and planes.! ! Clearly wandering the unknown regions at the poles, on the highest mountains and in the deepest jungles requires planning and equipment well outside the ordinary. Explorers who took off on an expedition without the advice of an outfitter like Major Fiala were unlikely to survive the dangers they encountered.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 7
  • Slide! Prepared Remarks! But Major Fiala does not limit his attention to just these extraordinary items ...!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 8
  • Slide! Prepared Remarks! he emphasizes the importance of mundane equipment, such as candles (and presumably matches)!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 9
  • Slide! Prepared Remarks! and the lowly can-opener. He says “I recall one traveling troupe, exploring de luxe with large quantities of canned goods, found itself far away without a single can- opener.”! ! These things happen. I once went on a camping trip, with my future wife. Only as we approached our campground, after driving 500 miles, did I realize that we had forgotten our sleeping bags. Fortunately we weren’t far from civilization, and after only one miserable night we were able to buy a blanket and make do.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 10
  • Slide! Prepared Remarks! If you limit your vision of expeditions to just the adventure of it all, you might only plan for extraordinary equipment.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 11
  • Slide! Prepared Remarks! But, if you appreciate that most of what you do on expeditions is struggle to survive, you pay a lot of attention to the basics of life, and ensure that you are well supplied with the mundane.! ! You may be able to enjoy beautiful scenery and ponder fascinating scientific questions as you trudge along, but only if you are well enough physically and mentally for such luxuries.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 12
  • Slide! Prepared Remarks! It turns out there is much that is similar in caregiving journeys. ! ! I want to emphasize that I’m talking about families caring for each other, rather than about healthcare professionals.! ! I also want to take a moment to acknowledge that the language -- calling these people caregivers -- is not ideal. But it is the commonly used term in the US. For example I am on the board of a prominent US organization called the Family Caregiver Alliance. A similar organization here is Carers Australia. Perhaps that’s a better term.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 13
  • Slide! Prepared Remarks! In any case, family caregiving is also often filled with extraordinary events — big events that cause dramatic disruptions of normal life, that require significant interaction with people outside the family (especially health professionals).!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 14
  • Slide! Prepared Remarks! But much of caregiving is not the extraordinary. Rather it is a never ending flow of the mundane. It involves helping with life, day-to-day, hour-to-hour. Everything from medications to therapies, to cooking and cleaning and bathing and chores, as well as the very important elements of companionship and emotional support.! ! Each little task is generally easy, trivial even. But together they add up. In the US the average family caregiver spends more than 20 hours each week on such tasks. Roughly 20 million family caregivers devote nearly 50 hours each week to such responsibilities. And it goes on for years and years, sometimes decades. Caregivers often find themselves overwhelmed by the mundane.! ! The question of how can one assist caregivers with the overwhelming mundane has been my interest for some time. What equipment could we provide that would be useful? What’s the equivalent of candles and matches and can-openers?! ! To understand what tools might be useful,Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! one first has to take a closer look at the mundane.! 15
  • Slide! Prepared Remarks! Let’s start with an example of a woman caring for herself — she suffers from cystic fibrosis. I asked her to keep a journal one day of everything she did that day. Here’s what it looks like.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 16
  • Slide! Prepared Remarks! I’m going to go through her day pretty quickly. Tasks directly related to medications and interactions with healthcare will be shown on top, and other aspects of life on the bottom.! ! … here we go ...!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 17
  • Slide! Prepared Remarks! She begins her day with many health- related tasks …!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 18
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  • Slide! Prepared Remarks! … people with cystic fibrosis often spend a lot of time with nebulizers …! !Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 20
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  • Slide! Prepared Remarks! … an hour and a half after waking up, she finally gets to do something normal …!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 23
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  • Slide! Prepared Remarks! … she gets a break in the mid-afternoon during which she usually naps as she’s exhausted …!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 36
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  • Slide! Prepared Remarks! … in the afternoon there’s some time for home and family …!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 39
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  • Slide! Prepared Remarks! … the day ends with more health tasks …!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 43
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  • Slide! Prepared Remarks! … before finally going to bed!!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 51
  • Slide! Prepared Remarks! As you can see, caring for herself takes an enormous amount of time. And, of course, this goes on everyday. With occasional changes … as her health improves or gets worse, as new therapies are attempted, as other things in life intrude.! ! You can understand why one can easily lose track, forget to do something or forget whether something has been done, and make mistakes.! ! This can be especially difficult for a caregiver, for someone caring for someone else, while also managing their own life — their other family, society and work responsibilities.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 52
  • Slide! Prepared Remarks! I’ll show you a couple of more examples, though in much less detail. This is the daily regimen of a man who has had a liver transplant. To keep the chart from getting even more complicated, I’ve left out many things such as various aspects of life management, and interactions with health professionals.! ! When I met with his wife, she had a thick binder she always carried with her that had detailed notes for each day, and she pointed out how things varied from day to day. They can’t do this by rote; they have to be paying attention everyday. And they’ll be coping with this for the rest of his life.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 53
  • Slide! Prepared Remarks! This example is from a person going through chemotherapy for breast cancer. As before, the chart includes only the directly medical items, leaving out much of day-to-day life management. This regimen fortunately ends after a few months, and the person is now doing very well. But for those few months, the burden on her and her family was quite significant.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 54
  • Slide! Prepared Remarks! That brings me to another important point about everyday caregiving, that often there are many people involved.! ! Caregiving is often stereotyped as a woman in her late 40s caring for aging parents. This stereotype hides many important realities. First is that the elderly are not the only ones who need care. Two of the previous examples were of much younger people. A second feature of real- world, day-to-day caregiving is that it involves a network of care. Many people are often involved. People are cared for by multiple family members; and people are providing care to multiple family members. It’s not a simple 1-to-1 relationship. Some are doing more than others. Often one family member has the bulk of the burden. But others sometimes step in to help, and many may be involved emotionally. And thirdly, care is not uni-directional. People are often caring for each other.! ! While it is nice when people share the burdens of caregiving, these overlapping networks of care also impose their own burden. That is the communications burden, the overhead, of keeping everyone informed of what’s going on, ofRajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! what needs to be done, of what has been done. Many mistakes, and much frustration, results from mis- communication.! ! In the past few weeks I have interviewed a wide variety of family caregivers to understand who they view as being in their 55 care networks.!
  • Slide! Prepared Remarks! Here is a diagram of the family that was involved in the chemotherapy example I showed you earlier. X lived with her parents, and her mother shouldered much of the caregiving responsibilities. Other friends and family also helped out. The grayer the line, the further away those caregivers lived. Some of them flew in regularly to help. Keeping everyone in- sync was not easy.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia!
  • Slide! Prepared Remarks! In this case, a man in his 50s, one of my neighbors, is caring for his wife with Alzheimer’s. He is supported by professionals both in the home and nearby, as well as by distant family members. Other friends and neighbors have also stepped in to take care of him, while he cares for his wife.! ! This example also highlights the fragility of these caregiving networks. Just hours after our interview, X was hospitalized due to a traffic accident, making a difficult situation much much more challenging.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 57
  • Slide! Prepared Remarks! In this example, a daughter is actively managing the care of her mother who lives far away. The mother is wealthy enough to afford several assistants, but nevertheless X spends several hours each day supporting her mother and coordinating her care, and often flies in to help directly.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 58
  • Slide! Prepared Remarks! This story is from my own family. The sister in the diagram is my wife, supporting her sister in taking care of a nephew going through a major health crisis. The US, like Australia, is a big country and there’s a lot of airplane travel involved in caregiving. My sister-in-law also watches over the health of several adults.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 59
  • Slide! Prepared Remarks! In this last example, X cares for her mother, who lives in a nearby nursing home, while also taking care of a child. This situation — the “sandwich generation” caring for parents, children, and often spouses and friends — is happening more and more often as we live ever-longer lives.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 60
  • Slide! Prepared Remarks! So how do we manage today? What tools do these families, and others, use today?! ! The most useful tool seems to be paper. We write things down, we make lists, and we put these pieces of paper throughout the house — in the kitchen, in the bathroom, at the front door, in our purses and briefcases.! ! But paper isn’t ideal for reminders, and nicely organized lists like this have to be edited regularly to keep up with changes. And it’s difficult for all the caregivers to know what’s going on day-to-day if the information is on paper.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 61
  • Slide! Prepared Remarks! So, people spend a lot of time on the phone, calling and texting each other, as well as using other social media. These certainly have made it easier to keep the whole family, and even extended family and friends, informed. But, it’s hard to keep this up on a day-to-day, hour-to-hour basis, hard to keep this up for everyday caregiving.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 62
  • Slide! Prepared Remarks! There are of course thousands and thousands of apps. There are group calendars and group to-do lists, which can be very valuable in appropriate circumstances. Turns out they fall critically short for everyday caregiving. For example they aren’t designed to track the little bits of information that are critical in managing health, such as the fact that you’ve taken “2” pills, or the pain was “sharp” and in the “ankle”.! ! There are also countless health apps, each designed for some particular aspect of health — for tracking weight, or glucose and insulin, or diet, or … whatever. One could probably find an app for every single item on any person’s caregiving task list. But that means flitting from app to app, adding yet another burden.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 63
  • Slide! Prepared Remarks! Another rather popular coping strategy is to avoid the problem of communication and coordination by putting all the responsibility on one person. Unfortunately this results in that poor person being totally overwhelmed and lonely, leading to that person’s health decline.! ! So, none of what’s available today is really up to the job. Families make do as best as they can, but they struggle.! ! This is what I’ve been focused on for several years. Trying to develop tools that would help family caregivers better manage everyday caregiving.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 64
  • Slide! Prepared Remarks! The initial challenge was to develop something to help the user remember and track anything, to have the flexibility to support the wide variety of care tasks noted earlier. ! ! In 2007, we developed this device. We called it Zuri. We had to develop a custom device as smartphones were not yet good enough. This was used by about 60 different people, with a very wide range of chronic conditions. And we discovered that people’s regimens were much more varied than we had imagined. One person had over 30 different medications, exceeding the limitations of our device. Another person included “shoveling manure” as one of the items in their regimen. Wondering if this was a commentary on the value of the product, we contacted the user. We learned that she lived on a farm, that shoveling horse manure was hard work, and that she was keeping track of this as part of her exercise routine!!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 65
  • Slide! Prepared Remarks! By 2009, the iPhone had improved significantly, so we implemented similar functionality as an app, used by many more people.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 66
  • Slide! Prepared Remarks! Based on all that was learned from the experiences and feedback from those early users, we were able to release a better version in 2011. This, an iPhone app called Tonic, provided even more flexibility, while also being easier to use. This version is being used by hundreds of people. What was particularly interesting to see was how this version attracted a broader group of people. Users are not only those with chronic diseases. Many users are healthy people who have fitness or nutrition regimens that they follow, to stay healthy. It turns out they have the same difficulty dealing with the mundane as the caregivers that we are focused on.! ! This and the previous two products were primarily used for self-care — people taking care of themselves — rather than for family caregiving. This was not surprising, as there was no support for the caregiving networks I talked about earlier.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 67
  • Slide! Prepared Remarks! That limitation will be addressed in the next version, to be released later this year. Unfrazzle is an app to help family caregivers. It is designed from the ground up to support caregivers with their everyday, mundane tasks. It will help the user, a family caregiver, remember and track the full range of their caregiving tasks — for all the people they take care of, including the family pets and themselves — while also staying in-sync with co-caregivers.! ! We imagine this as one of the basic tools in the caregiver’s equipment kit.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 68
  • Slide! Prepared Remarks! I would like to close by highlighting a critical difference between caregiving journeys and exploration expeditions. ...!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 69
  • Slide! Prepared Remarks! Expeditions are planned. You know you’re going on one. You plan ahead, consulting experts like Major Fiala, and you know where you’re going to be … though of course things may not quite work out that way. This map shows Admiral Byrd’s 2nd Antarctic Expedition … apparently it involved New York, the Panama Canal, Christchurch, and Buenos Aires, in addition to Antarctica itself.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 70
  • Slide! Prepared Remarks! By contrast, life in general, including our health, is much less under our control. This is an illustration of someone’s health over time.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 71
  • Slide! Prepared Remarks! Surprises happen. Dramatic downturns in our health are usually unexpected. These precipitate health crises, where families are thrown into disarray, and our caregiving demands are great. For these times, extraordinary assistance is needed, and families would benefit from the equivalent of Major Fiala’s guns and airplanes. ! ! Families are often unprepared mentally and otherwise for the demands of caregiving. We, most of us anyway, are not so good at preparing for future crises. It’s too far away … it’s just not real.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 72
  • Slide! Prepared Remarks! But, there is often an opportunity to engage people. There is often an “on- ramp”, a period where the person’s health is slowly deteriorating, where the family is ever so slowly providing more and more assistance.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 73
  • Slide! Prepared Remarks! The challenge in taking advantage of this period as a teaching opportunity is that during such times families often don’t consider themselves “caregivers”. We’re not caregiving; we’re just being a family! Therefore we don’t seek out help, and don’t realize help is available.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 74
  • Slide! Prepared Remarks! This is partly a consequence of the health profession focusing on the extraordinary, when professional assistance is most needed. A consequence of not including the mundane in our framing of the challenges of caregiving.! ! This is an opportunity. If we acknowledge the importance of everyday, mundane caregiving, and the difficulties of managing the mundane; and if we develop tools and services to help families with the mundane; then we can engage families during the “on-ramp” and help them be better prepared for the inevitable crises.! ! There is an opportunity to empower people for better caregiving.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 75
  • Slide! Prepared Remarks! There is much we can do to better outfit families for caregiving journeys. And so, to my mind at least, there is much reason for hope that these challenges will be less burdensome for families in the future.! ! Thank you.!Rajiv Mehta • rajiv@bhageera.com • 1 August 2012 • HIC2012 Sydney, Australia! 76