family caregivers

Fascinating Facts on Family Caregivers: Highlights from Caregiving in the US 2015

July 6, 2015

If you follow aging and caregiving, then you’ve probably already heard about the major new caregiving report that was released last month: “Caregiving in the US 2015,”a joint effort from the National Alliance for Caregiving and AARP. The study was funded by AARP, Archstone Foundation, Eli Lilly, Home Instead Senior Care, MetLife Foundation, Pfizer, UnitedHealthcare, and the Family Support Research and Training Center in conjunction with the University of Illinois at Chicago.

Strangely, this report seems to have been hardly covered by the major newspapers. I say this is strange because the findings are incredibly important and should be part of the national discourse, instead of only being covered by aging and caregiving wonks.

After all, everyone knows someone who’s struggling to help an aging spouse or parent. This nationally representative survey found that 18% of respondents were caregivers. Of those, most (79%) were helping an older person, as you can from this excerpt of the executive summary:

prevalence-of-caregiving-2015 — Caregiving prevalence & basics, from page 9 of the executive summary

The report also later notes that nearly half of caregivers provide care to someone age 75 years or older.

For this survey, caregiving for an adult was defined as providing “unpaid care to a relative or friend 18 years or older to help them take care of themselves.” (For child care recipients, the survey sought to identify people providing care due to “medical, behavioral, or other condition or disability.”)

Highlights from the executive summary

If you are involved in aging, caregiving, or even healthcare, I would strongly encourage you to review the report’s executive summary. It is chock full of fascinating data, which I’ll summarize below.You should also consider signing up for the related webinar, which will be on July 15th from 2-3p EST. Sign up here.

Older caregivers have a high care burden. The survey found that nearly 1 in 10 caregivers is aged 75 or older. They noted that such older caregivers — most of whom care for a spouse — tend to put in a lot of hours (34/wk on average), often are not enlisting paid help, and often have been providing care already for 5.6 years. This group reported being very involved in communicating with health professionals, and said they want more information about making end-of-life decisions.

What PBS Forgot in its Caregiver Resources Section

May 8, 2015

As many know, family caregivers of aging adults are of extra-special interest to me. I’ve been studying their needs and creating health content for them since 2008, and these days I spend over half my time working on GeriatricsForCaregivers.net and a related site.

So I was thrilled to find out that PBS was releasing a special titled “Caring for Mom & Dad,” which is premiering this month.

But then I took a look at the website, clicked “Caregiver Support,” and I was a bit dismayed. Here are the resource sections I saw listed:

Getting Started
Managing Finances
Government Resources & Support
Workplace Resources & Support
Communicating with Family
Technology

Notice anything important that is missing? That’s right. Nothing about how to manage health or medical. (Sorry, but the Medicare Nursing Home Locator does not count.)

I also noticed there is nothing about addressing advance care planning, which is really crucial for family caregivers since nearly half of seniors require surrogate decision support during hospitalizations.

This is a disappointing oversight. Because as any family caregiver will tell you, they spend a lot of time dealing with health issues.

This was confirmed by an important 2012 report published by the United Hospital Fund and AARP’s Public Policy Institute. Titled “Home Alone: Family Caregivers Providing Complex Chronic Care,” it reports that 46% of family caregivers are performing medical and nursing tasks.

And of course, underlying health issues are why families step in to help aging adults. If it weren’t for health problems, then aging challenges would mainly be about things like dealing with losses and age-related discrimination and loneliness…all of which are very important but those are not why people end up having to take care of Mom and Dad.

Aging Problems, Caregiving Problems, & Health Problems Are Always Interconnected

I am going to say this again, mainly because it seems clear that it’s not top of mind when people think about caring for aging relatives, and it really should be:

Almost all aging problems that cause worry in families track back to underlying health problems.

Personal health record needed for these two use cases

August 8, 2014

A friend called me the other day: he is moving his 93 year old father from New England to the Bay Area.

This is, of course, a relatively common scenario: aging adult moves — or is moved by family — to a new place to live.

Seamless transition to new medical providers ensues. As does optimal management of chronic health issues. Not.

Naturally, my friend is anxious to ensure that his father gets properly set up with medical care here. His dad doesn’t have dementia, but does have significant heart problems.

My friend also knows that the older a person gets, the more likely that he or she will benefit from the geriatrics approach and knowledge base. So he’s asked me to do a consultation on his father. For instance, he wants to make sure the medications are all ok for a man of his father’s age and condition.

Last but not least, my friend knows that healthcare is often flawed and imperfect. So he sees this transition as an opportunity to have his father’s health — and medical management plan — reviewed and refreshed.

This last request is not strictly speaking a geriatrics issue. This is just a smart proactive patient technique: to periodically reassess an overall medical care plan, and consider getting the input of new doctors while you do this. (Your usual doctors may or may not be able to rethink what they’ve been doing.) But of course, if you are a 93 year old patient — or the proxy for an older adult — it’s sensible to see if a geriatrician can offer you this review.

Hence my friend’s situation illustrates two common core healthcare needs that families of older adults often have:

To successfully manage a transition to a new team of medical providers.
To obtain a second opinion regarding a person’s health, chronic conditions, and the medical management plan. (For more on how this approach can can help patient assess the quality of their outpatient care, see this post.)

To address both of these needs, older adults and family caregivers need a good personal health record (PHR).

So, I find myself — yet again — on the hunt for a good PHR system to recommend to families.

As some might recall, I blogged about PHRs back in January. (See this post.)

And now the time has come for me to take another look at what’s out there for PHRs. Let’s see what people can recommend for these two family caregiver use cases.

Two use cases for personal health records

I have two particular use cases in mind. One is based on my friend’s situation, which I described above, and the other is based on a comment that was recently posted over at Geriatrics for Caregivers.

Use Case #1: The family of an older adult with multiple chronic problems has not been collecting substantial health information. (As in, copies of the health information that doctors look at; I’m not talking about those patient visit summaries, which I find are barely of use.) The family is moving the aging parent across the country, and are requesting a comprehensive consultation.

Persnickety doctor (yours truly) sends them her list of medical information that they should bring to the first visit. Family needs to:

Obtain this information, much of which is currently in the hands of prior providers,
Organize it and keep it in a way that will facilitate care in the future,
Keep adding medical information to their repository in the future, in part because Dr. Kernisan has insisted that this will pay off for future healthcare needs.

Use Case #2: I am just going to paste the relevant comment right here, as I find it fascinating. Of note, in the related Geriatrics for Caregivers blog post, titled “Tools for Caregivers: Keeping & Organizing Medical Information,” I listed a number of digital options for managing health information. However, the reader still felt a need to request additional advice. (The moral of the story: family caregivers will likely be asking doctors and others for advice. I assume this is because sorting through a lot of options on your own is tiring; that’s why people ask experts instead of figuring it all out on their own via Google.)

I’m a caregiver to my mother in that I go with her to all her doctor visits & keep a notebook (4 inches) that has all her doctors’ notes (5 in all), hospital visits/ER visits & tests. The notebook grew from a smaller one to the 4-inch one because during her last hospital visit, the doctors were asking me questions that I didn’t know the answers to & didn’t have that specific doctor’s records to help them. Believe me, I got on that right away while she was still in the hospital & it stayed with her at the hospital until she came home.

I also keep an updated list of her medications with allergies listed as well as a 3-page typed-out present, past medical, past surgical, family & social history.

There is a notebook-sized business card holder for her appointment cards.

My problem is now that that 4-inch notebook is becoming heavy to carry, but as sure as I put all the different dividers into individual notebooks & take that particular notebook with us to that particular doctor, he’ll want to know what one of the other doctors said or what the most recent tests showed & I won’t have that information. Is there something out there like a PDA or something where I scan the paper copies onto our home computer, then put the scanned copies on the device as well as a calendar in order to keep her appointments?

Like the idea above about putting a “please return to…” sign on the notebook; never thought about it getting lost.
Thanks for your help.

So to summarize this use case: an adult-child caregiver has been maintaining a personal health record on paper. She has decided that it’s in her mother’s interest for her to serve as health information exchange system. (Smart!) Her notebook is getting big and cumbersome, so she’d like to convert it to a digital repository. She finds providers are often interested in health information — including test results — from other providers.

She needs to:

Convert her existing paper resources into a digital format,
Easily share content from the PHR with her mother’s various doctors,
Keep adding information to the PHR as her mother continues to see various providers.

What personal health record systems can you recommend?

I have a few PHR ideas for these two use cases, but I haven’t had time to research in depth since last January’s PHR post. So I am soliciting suggestions and recommendations from you, dear readers.

You may want to take a look at my recently posted list of 10 Useful Types of Medical Information to Bring to a New Doctor. This may not be what consumers initially think of when they try a PHR, but this is what I want to see at that first visit, and I believe the information would be of use to most doctors.

If you have suggestions for a PHR system that would work for these use cases, please share below. Bonus points if you have actually tried these as a user, and for a patient who has multiple chronic conditions. Thanks!

Note: If you post a comment and you have a relationship to a product you mention, please disclose.

Thoughts on two tech innovation reports & a real family in need

July 22, 2014

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.”

And on page 4 of the report, there is even a nifty graphic, which she says are “three personas reflected throughout its publications that represent the AARP cohort of age 50+.” Here it is:

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.