|From pg 4 of “Challenging Innovators”|
Recently I read two reports on developing technology innovations to help us care for older adults:
“Challenging Innovators: Matching offerings to the needs of older adults” by Laurie Orlov, sponsored by AARP’s Thought Leadership group, and
|From pg 2 of “Catalyzing Technology”|
“Catalyzing Technology to Support Family Caregiving” by Richard Adler and Rajiv Mehta, sponsored by the National Alliance for Caregiving (NAC).
Both reports are based on expert opinion (as opposed to survey data), and seem to be primarily geared towards helping entrepreneurs develop better solutions related to the care of aging adults. (Note: the NAC report isn’t specifically about caring for older adults, but acknowledges that much family caregiving activity is driven by the needs of older adults.)
Although these reports are worth reading, I’ll admit that they both left me a bit perplexed and dissatisfied.
Undoubtedly this is partly because the authors — and the primary intended audience — are not “people like me.”
Meaning they aren’t practicing clinicians or academic experts embedded within geriatrics divisions, or even healthcare improvement circles.
The AARP report is very “business-y”, and the NAC report seems to have purposefully excluded the perspective of healthcare professionals. (Perhaps to counter the way that healthcare professionals have historically dominated conversations about aging and caregiving?)
But let’s set the needs of doctors and quality improvers aside for now. In the end, this is supposed to be about helping people, right? As in, helping patients, helping older adults, and helping the families and friends and many others — like front-line clinicians — who help them.
So, I tried to think of older adults and their caregivers as I read these reports. And I found myself still struggling to see just how these ideas and approaches were going to turn into materially better experiences for the patients and caregivers I work with.
Failure of my imagination? Or weakness of the proposed ideas and conceptual foundations?
Janny: A real boomer who could use tech help for aging and caregiving
Personally, when I find myself getting confused by concepts and improvement ideas, I resort to the concrete.
As in, I think of people I know who have common problems, and need help. And then I try to follow a mental path from some entrepreneur’s ideas to actual help for an older person, and/or the family.
This week I read about a family caregiver, whose problems are very common. Her handle is “Janny57” and I read about her situation on the AgingCare.com caregiver forum. (Now there is a GREAT way to learn about what family caregivers are struggling with: read the questions they post on active forums.)
Last week, Janny57 posted asking if anyone else had left husband and kids to care for a parent.
When another forum user asks her to share more details about her caregiving situation, Janny57 mentions that her 85 year-old widowed father
- has memory problems,
- isn’t taking his blood pressure meds (and was recently prescribed more BP meds to take, which sounds like sub-optimal healthcare management to me),
- is having difficulty managing his finances,
- is likely depressed,
- drinks beer every night,
- has been put on an antibiotic for high PSA,
- has dental problems,
- has a shoulder that is “killing him” due to bursitis/tendonitis,
- has had some driving incidents,
- is putting dirty dishes in cabinets and refusing to throw out rotten food,
- is refusing to pay to have someone help him,
- has not had a dementia evaluation and does not go to the doctor much, although he did go recently since his shoulder was killing him and the doctor noticed that his patient didn’t remember their conversation the day prior.
Other caregivers responded with a wealth of advice on helping a parent with dementia, on balancing family and work and marriage and caring for a parent, on surviving the experience, on moving a parent into your home, on moving into your parent’s home, and so forth.
This peer-to-peer caregiver support is good stuff, and I’ve actually been telling families to look for a suitable online forum.
But of course it’s not enough to tell someone like Janny to get help from a forum. She’s having serious problems, her dad is having serious problems, and as a society we need to get better at helping people like Janny and her dad.
Now below are two ideas I have, which maybe could enhance future reports of this type.
Idea #1: More challenging personas
What if these reports were to include a persona similar to Janny, or to her dad? (Not sure what I mean by “persona”? Try this resource for information on how personas help in design.)
Personas are actually featured early on in Laurie Orlov’s report; right at the beginning it says “Age Doesn’t Matter — Personas Help Shape Scenarios that Inspire.”
But I found myself rather dissatisfied by this graphic.
Obviously, when you are a hammer everything looks like a nail. So, since I’m a physician, I’m oriented towards health problems. And since I’m a geriatrician, I’m especially prone to think about how almost every problem an older person has tracks back to an underlying problem with health, or healthcare.
So I admit I am biased to thinking of health and healthcare. Still, I wonder if many non-clinicians out there might not agree with me, and find it a flaw that this graphic says exactly zero about the role of health problems in each personas life.
After all, what do you suppose it is that moves people from one stage to the next? (Er…health problems, no?)
What is a major cause of caregiver involvement in an older person’s life? Health problems. What do caregivers spend a significant portion of time doing? Helping an older person interface with the healthcare system, and helping an older person with his or her “self-healthcare.”
Why is Janny about to leave her husband and kids behind, to help her father? Because of his health problems.
Speaking of Janny’s father, which persona represents him??
Maybe someone can answer that in the comments below. Suffice to say that I have come across many, many people like Janny’s dad, and as the population ages, more and more families will be in this position.
And Janny herself, if she gets more involved in caring for her father, is at high risk for developing or exacerbating her own health problems. (We should care just on moral/ethical reasons, but her employer and health insurer should also be very concerned about this.)
So, I think we need to expand the persona selection. Designers for caregivers and aging adults: consider following the caregiving forums. You might get some good ideas there.
Idea #2: Make sure you always consider the role of health problems and healthcare
As I said above, I realize my geriatrician background means I’m likely to be biased in favor of attention to health and healthcare.
Still, when it comes to caring for aging adults, I don’t see how you can create truly useful — and usable — solutions without giving serious consideration to health, and healthcare issues.
And I mean solutions that are useful to older adults and their caregivers, not just solutions that are useful to doctors. (Although really, our fates are intertwined! Healthcare is a partnership!)
At a minimum, I think some bar representing “health & healthcare problems” needs to be added to the Personas graphic.
For instance, among the “Independent Persona” people who are highly functioning, a fair proportion of them have chronic health problems that they need help managing. They need this help in order to maximize their current quality of life, and they need this help in order to reduce the chance of progressing to “Transitioner” or “Struggler.”
Their health problems usually can’t be managed without interfacing with the healthcare system. Supporting an effective partnership with the system is important. (Which means to some extent helping people compensate for the system’s deficiencies and dysfunctions, but that’s a topic for another post.)
Those who are “Transitioners” are presumably even more likely to have health problems. They are also more likely to have others — whether family, friends, or residential facility staff — concerned about these health problems.
Furthermore, the status of — and approach to managing — health problems often affects how much daily help an older person needs. (For example, it’s often possible to streamline or simplify a medical care plan.) This is especially true for the “Strugglers,” and the NAC report quite correctly cites Carole Levine and the 2012 AARP/United Hospital Fund survey which found that over half of caregivers are “‘performing medical/nursing tasks for care recipients with multiple chronic physical and cognitive conditions,’ which involved such tasks as managing multiple medications, wound care, giving injections or intravenous therapy, incontinence support, and/or serving as care coordinators.”
So, if you are trying to design solutions to meet the care needs of aging adults — whether you are trying to help older adults or whether you are focusing on helping caregivers — it would seem that health and healthcare are important factors to consider.
But if you take a closer look at Frog Design’s “Aging by Design Innovation Map,” which is where the 3 Persona graphic comes from, you’ll note that there is precious little about health and healthcare concerns.
Shouldn’t “Help me feel well” be a core need?
Yes, it should.
Summing it up
Many of the challenges that older adults — and their family caregivers — face are heavily influenced by issues related to ongoing health problems, as well as healthcare encounters.
To develop and offer effective solutions that help us care for aging adults, innovators should consider the relevant health and healthcare issues. Although specialists are obviously very useful, innovators should also seek out good generalists, whose job it is to help patients develop an overall comprehensive plan for their care. (Examples: Dr. Allan “Chip” Teel has developed a tech-enhanced approach to help his older patients in Maine remain independent. OnLok and other PACE clinics have found ways to effectively work with family caregivers, to keep nursing-home eligible seniors in their homes. Figure out what they are doing right and build on it.)
“Help me feel well” is a core need that often requires attention, when it comes to older adults. That need, and what it takes to address that need, should be on the innovators’ radar.
It would probably help to develop personas that factor in some key health issues, and I hope Frog Design will consider revising their Aging by Design Innovation Action Map.
I recommend innovators consider how their conceptual frameworks might help them with the story of Janny57 and her father. Consider the problems she needs to solve, for herself and for her dad. How will your solution help? What else needs to happen for it to help? I’d also encourage innovators and designers to read many other real caregiving stories in online caregiving forums.
If you’re part of that frontline of care for older adults — an older patient, a family caregiver, or a practicing clinician — what do you think of these latest reports? I hope you’ll post a comment below.