GeriTech

In Search of Technology that Improves Geriatric Care

geriatrics

Knocking on Health 2.0’s Door

[This post was first published on The Health Care Blog on 10/16/13. See comments here, including one from Katy Butler, calling for a grassroots movement to demand changes in Medicare that would support more high-touch services and Slow Medicine. Hear hear!]

I recently attended the flagship Health 2.0 conference for the first time.
To avoid driving in traffic, I commuted via Caltrain, and while commuting, I read Katy Butler’s book “Knocking on Heaven’s Door.”
Brief synopsis: healthy active well-educated older parents, father suddenly suffers serious stroke, goes on to live another six years of progressive decline and dementia, life likely extended by cardiologist putting in pacemaker, spouse and daughter struggle with caregiving and perversities of healthcare system, how can we do better? See original NYT magazine article here.
(Although the book is subtitled “The Path to a Better Way of Death,” it’s definitely not just about dying. It’s about the fuzzy years leading up to dying, which generally don’t feel like a definite end-of-life situation to the families and clinicians involved.)
The contrast between the world in the book — an eloquent description of the health, life, and healthcare struggles that most older adults eventually endure — and the world of Health 2.0′s innovations and solutions was a bit striking.
I found myself walking around the conference, thinking “How would this help a family like the Butlers? How would this help their clinicians better meet their needs?”
The answer, generally, was unclear. At Health 2.0, as at many digital health events, there is a strong bias toward things like wellness, healthy lifestyles, prevention, big data analytics, and making patients the CEOs of their own health.
Oh and, there was also the Nokia XPrize Sensing Challenge, because making biochemical diagnostics cheap, mobile, and available to consumers is not only going to change the world, but according to the XPrize rep I spoke to, it will solve many of the problems I currently have in caring for frail elders and their families.
(In truth it would be nice if I could check certain labs easily during a housecall, and the global health implications are huge. But enabling more biochemical measurements on my aging patients is not super high on my priority list.)
Don’t get me wrong. There was a lot of cool stuff to see at Health 2.0; a lot of very smart people are creating remarkable technologies and tools related to healthcare. The energy, creativity, and sense of exciting possibility at a gathering like this is truly impressive.
And yet, most of the time I couldn’t shake the feeling that all this innovation seemed unlikely to result in what our country desperately needs, which is more compassionate and effective healthcare for Medicare patients and their caregivers.
The need to improve healthcare is particularly urgent for those seniors who have 3+ chronic diseases, or have developed cognitive and/or physical disabilities, since health issues seriously impact the daily lives of these patients and their caregivers. And of course, these patients are where most of the healthcare spending goes.
So here we have a group that uses healthcare a lot, and their problems are the ones who challenge front-line clinicians, healthcare administrators, and payors the most. And we love these people: they are our parents, grandparents, and older loved ones. Many of us are even taking care of them, sometimes to the detriment of our own health.
Knock knock. Who is listening? Where is the disruptive innovation we need to help elders, caregivers, and their clinicians?

Real impediments to the Health 2.0 Revolution

“Ready to Revolutionize Healthcare?” asks the Health 2.0 homepage.
Yes, I’m ready. But we’ve got a ways to go before these revolutionary tools can actually revolutionize the average older person’s experience with healthcare.
Why? Two key reasons come to mind.
1. Most solutions not designed with the Butlers in mind. As best I can tell, most innovators don’t have the situation of the Butlers in mind when they design their healthcare solutions. They neither understand the situation from the point of view of the Butlers themselves, nor do they understand the situation from the perspective of the front-line clinicians who could and should do better.
For instance, did the Butlers need games to maintain healthy behaviors and keep Mr. Butler walking and exercising after his stroke? Did they need for all interventions to be considered in light of “Healthspan” rather than “lifespan”?
(What is Healthspan for a slowly declining person with dementia and incontinence anyway? We geriatricians think of improving function, wellbeing, quality of life. And most importantly, of prioritizing the issues because you can’t possibly address them all so go with a combination of what matters most to the patient and what seems most feasible.)
And did the clinicians involved need predictive analytics to help them identify when Mr. Butler was at risk getting worse on some axis that the population health management gurus are worried about?
Which of these innovations will help patients, caregivers, and front-line clinicians establish an effective collaboration on mutually agreed-upon goals, and tailor healthcare to the patient’s situation and needs? How to convert population level processes regarding outcomes and cost-containment into real improvements in the healthcare experience of most elderly patients?
Finally, Medicare is the 600 pound gorilla in healthcare, both as a payer and as what most healthcare providers spend most of their time serving. You want to change healthcare? Change how we care for seniors. (And I don’t mean the healthy ones over-represented at AARP.)
2. Too many solutions to choose from. If you are a patient or caregiver, and decide to consider a new approach to weight loss, or timed toileting, or tracking a symptom: the number of approaches you could try – whether tech enhanced or no — is overwhelming. Especially if you research online.
If you are an individual clinician — or a smaller practice — and would like to consider a new and improved way of doing things: the choices are overwhelming. (A lot of primary care is provided by small practices; there’s obviously a trend towards consolidating but also some backlash.)
Now of course, big organizations have more resources with which to choose solutions for their providers, and big payers can choose solutions for individual patients and families. But unfortunately, when tools aren’t chosen by those who use them, users tend to end up with crummy user experiences.
There is probably an innovative way to work around this and make it possible for end-users to more easily find tools that are a good fit for them. But until those innovations become widely available, I think many in the trenches — patients, caregivers, and clinicians — may find that supposedly helpful innovations are actually not so helpful…a frustrating state of affairs when one is overwhelmed with the challenges of helping an aging adult in declining health.

Islands of relevance at Health 2.0

At an event as big as Health 2.0, there are of course pockets of activity relevant to the care of geriatric patients. There was a session on tools to help family caregivers (which covered two care coordination tools and two sensor/alert type tools) and another on nifty tech to help patients take their meds.
And of course, there was the justifiably popular Unmentionables panel, led by Eliza Corporation’s Alex Drane, which highlighted pervasive issues that affect health but that we tend to not talk about much. These include financial stress, relationship stress, and caregiving. (Good recap of the panel at Healthpopuli.com, and I LOVE that caregiving is high up on this list.)

Words to keep in mind

Alex reminded the Health 2.0 crowd that when it comes to helping with health, we must meet people where they are at. “Health is life; care, completely; empathy absolutely.”
As for me, I found myself thinking of a quote from Larry Weed and “Medicine in Denial.”

“The religion of medicine is not feats of intellect. The religion of medicine is helping to solve the problems of patients, and the compassion involved in the very act of care.”

Similarly, for those who evangelize digital health, and believe that new technologies will revolutionize healthcare, I would say:

The religion of healthcare should not be feats of technology. The religion of healthcare should be to help solve the problems of patients and caregivers, and the compassion involved in the very act of care.

And I’d also recommend they read “Knocking on Heaven’s Door,” or something similar, while attending exciting conferences and planning to revolutionize healthcare.

Medicine in Denial: What Larry Weed Can Teach Us About Patient Empowerment

[This post, which was first published on The Health Care Blog on 5/22/13, is the third and final part of a commentary on “Medicine in Denial,”(2011) by Dr. Lawrence Weed and Lincoln Weed. You can read Part 1 here and Part 2 here.]

It seems that Dr. Larry Weed is commonly referred to as the father of the SOAP note and of the problem list.

Having read his book, I’d say he should also be known as the father of orderly patient-centered care, and I’d encourage all those interested in patient empowerment and personalized care to learn more about his ideas. (Digital health enthusiasts, this means you too.)

Skeptical of this paternity claim? Consider this:

“The patient must have a copy of his own record. He must be involved with organizing and recording the variables so that the course of his own data on disease and treatment will slowly reveal to him what the best care for him should be.”

“Our job is to give the patient the tools and responsibility to organize the knowledge and slowly learn to integrate it. This can be done with modern guidance tools.”

These quotes of Dr. Weed’s were published in 1975, in a book titled “Your Health Care and How to Manage It.” The introduction to this older book is conveniently included as an appendix within “Medicine in Denial.” I highlighted it this section intensely, astounded at how forward-thinking and pragmatically patient-centered Dr. Weed’s ideas were back in 1975.

Thirty-eight years ago, Dr. Weed was encouraging patients to self-track and to participate in identifying the best course of medical management for themselves. Plus he thought they should have access to their records.

Fast forward to today. The Weeds’ book, appendix aside, contains many of the best ideas I’ve encountered regarding empowering patients and engaging patients.

This is because in the Weeds’ ideal world, healthcare would provide an orderly, consistent, dependable, and transparent infrastructure through which patients would move through as required by their medical needs, their preferences, and their goals.

The Weeds compare this vision of healthcare system to our existing transportation system. It’s an interesting analogy. They point out that travelers rely on expert service providers (i.e. pilots, travel agents, mechanics) as needed, but that the primary decision makers are travelers themselves, who are able to choose the destination, the route, and the mode of travel for a journey.

The Weeds use their transportation analogy to make a strong case for individualizing medical care according to patient preferences. They point out that two people driving across the country might choose completely different routes, depending on their preferences and needs, and that no one would expect travelers to conform to an “evidence-based” best route determined by experts.

They observe that similarly, no one should expect that two different people labeled with the “same” disease have comparable medical needs. They correctly note that “effectiveness is context-specific,” and that the patient really should be the one best positioned to determine effectiveness.

Hence the Weeds describe high quality, efficient care as emerging “case-by-case, each person finding a different pathway in a progression of many small steps, with each step carefully chosen, reliably executed, and accurately documented.” They also critique evidence-based medicine, which they feel interferes with the process of thoughtfully tailoring care to fit a patient’s uniqueness.

They propose that health care not be an “esoteric domain for specialized experts” but rather be seen as a “universal human pursuit.” They state that the health care system should be usable by ordinary consumers when feasible.

This is a very robust and well-articulated vision of healthcare that serves the needs and well-being of patients, rather than of providers. I especially liked the emphasis on patients learning to take an active part in individualizing the medical care so that it can best meet their needs, and would say this approach is essential if primary care doctors are to serve the role of expert consultants helping patients meet their health goals.

In fact, an entire chapter of “Medicine in Denial” is devoted to the need to develop a system of educating patients and helping them gain the skills to be more autonomous in healthcare. Particular good in this chapter is the Weeds’ explanation of why patient involvement is essential in two common medical situations: cases of medical uncertainty, and cases of chronic disease.

“In situations of uncertainty, the patient faces a set of choices, with substantial evidence for and against each choice based on the details specific to his or her own case. The physician cannot be relied upon to identify the individually relevant options and evidence without the right informational infrastructure. Once that infrastructure is available, reliance on the physician radically diminishes. The patient’s private judgment should control, as trade-offs are recognized, ambiguities assessed, and choices made. The choices are inherently personal.”

“[Chronic disease] cases start with great uncertainty, but often what needs to be done becomes reasonably clear from careful investigation and planning. Then the issue is execution, feedback and adjustment…It is the patient, not the physician, who must live with the risks, the pain, the trade-offs, the effort and time that decisions may entail…The patient is the one who must summon the resolve to make the behavior changes that so often are involved in coping with chronic disease. If the patient does not feel responsible for deciding what has to be done and is not heavily involved in developing the informational basis of that decision, then very often the result is “noncompliance” with doctors’ decisions.”

Given that in geriatrics, we are constantly trying to help patients navigate medical uncertainty as well as chronic disease, the above paragraphs really resonated with me.

Psst! Pass it on: patient empowerment is the underlying driver of “Medicine in Denial”

It’s this extremely patient-centered and person-centered vision of what healthcare should be that underpins the Weeds’ multiple detailed critiques of healthcare as we practice it now, and their proposals for how healthcare should be changed.

But it seems that “Medicine in Denial” has generally not been perceived as a book about transforming healthcare to support participatory medicine. For instance, Dr. Weed is not mentioned by name in e-Patient Dave’s recently published book “Let Patients Help,” nor is he mentioned in Eric Topol’s “Creative Destruction of Medicine,” two recently published books that emphasize the need for healthcare to provide more information and autonomy to patients.

This is too bad. Many people are currently in support of changing healthcare to better meet patients’ needs. But few have been as thorough, articulate, and perceptive about the obstacles to such changes. I’d also say that only a minority of writers seem to understand, as the Weeds do, the real challenges of managing multiple chronic illnesses over years.

Today we have a growing e-patient movement pushing for substantial changes in the patient-provider power dynamic. We also have the Internet making information widely available, as well as digital health technologies that can finally offer patients unprecedented assistance in accessing and organizing their own health data. Larry Weed was surely ahead of his time in 1975, but what about now?

Well, now it seems that Larry Weed is mainly thought of as someone who criticizes the way physicians approach diagnosis, or wants to reform the way they maintain medical information, or proclaims that all of medicine is in denial. This, I think, is in large part due to “Medicine in Denial” itself (starting with its title).

It’s a good book, but it is long, and feels somewhat sprawling. Who exactly is the intended audience? I found it a bit unclear. And what are the authors asking of the reader, other than to understand their analysis and agree that the profession of medicine is, in fact, in denial? The Weeds do describe how they believe medicine should be practiced, but the book lacks specific suggestions on how we might get there from here.

I found myself wishing the Weeds had worked more closely with an editor and – don’t laugh – some kind of a marketing or strategy consultant.

Because I think there is a market for their ideas, and that market is essentially the patients themselves, along with the patient engagement movement. It would be patients, after all, who have the most to gain from medicine adopting a more orderly and transparent approach to diagnosis and documentation. Likewise, it is the patients who have the greatest interest in chronic medical care being tailored to their individual needs, rather than proceeding according to evidence-based guidelines which may or may not be well-suited to their medical uniqueness.

So I found myself wishing that the Weeds would’ve addressed their book more directly to patients, and to those who are rooting for “disruptive innovation” in healthcare and hoping it will usher in a shiny new future of patient empowerment.

Summarizing my impressions of Medicine in Denial

My takeaway in assessing the contents of Medicine in Denial was this:

  • The Weeds’ vision of what healthcare should be is very sound, compelling, and in line with what many people – patients and healthcare experts – say healthcare should become. This book can and should be considered a manifesto for participatory medicine, especially since the Weeds do a particularly good job of emphasizing how we can individualize care according to the goals and preferences of patients.
  • The Weeds’ analysis of how the common practices of physicians – both in terms of cognitive work and of documentation — interfere with ideal healthcare is robust, detailed, and compelling. The flaws they identify in current practice are undeniably present and adversely affecting care. This should not really be a subject for debate (although it probably will be). The debate should be about what we can and should do to address these problems.
  • The Weeds’ proposals for alternative methods of delivering healthcare are intriguing, and deserve serious consideration. In this commentary I’ve touched on their proposals for how patients should be initially assessed (via standardized inputs and knowledge couplers, followed by clinical judgment and patient-provider collaboration), and how medical charting should be reformed to support comprehensive individualized care over time. Can these proposals really be implemented and operationalized at scale? I’m not sure, we would have to pilot the approaches, or better understand what happened in those smaller practices that Dr. Weed says adopted his methods several years ago.

In short, I believe Larry Weed and his son Lincoln are completely right about what healthcare should offer to patients, and what’s wrong with the way doctors practice now. Their analysis of what’s wrong touches on issues related to quality, outcomes, patient-centeredness, patient empowerment, medical education, the training of the healthcare workforce, and the personalization of medicine.

What to do about all that’s wrong about healthcare? These are the difficult questions that we are all wrestling with. I don’t know that implementing all of the Weeds’ ideas is the way to go, but I’d like to see their ideas being given more serious consideration.

“The religion of medicine is not feats of intellect. The religion of medicine is helping to solve the problems of patients, and the compassion involved in the very act of care.”

Words to change medicine by.

Will Activity Sensors in the Home Help Mom?

Lots of people are worried about aging parents who live at home, often alone. Could activity sensors in the home help?

Patients’ families have occasionally asked me about home sensors in the past, but I’m guessing this question will become much more common. After all, sensor technology is becoming much more affordable and easily available. And of course, many people want to help older adults remain safely in their homes. So there seems to be a market out there, and yesterday evening, at an Aging 2.0 event, I heard brief presentations by two companies developing home-based activity sensors targeting the aging market: Lively and Evermind.

With both services, sensors provide passive monitoring of an older person’s activity. Evermind uses sensors that are plugged into commonly used appliances. These track use of the appliances, and presumably would generate alerts if the use pattern were to change. Lively uses motion sensors in the home, which relay information to a nicely designed small base station with a cellular connection.

Both products seem to require minimal set-up or alteration to a person’s living environment. Evermind is still in development, so pricing and details are TBA. Lively is launching this summer, and will cost $149 for the equipment, plus a monthly subscription fee of $19.95. (Along with the passive activity monitoring, Lively’s service includes postal delivery of Livelygrams, which allow families to share news and pictures with their older loved ones.)

So, if you have an aging parent living home alone, should you get one of these activity monitors? Will it help?

The answer, of course, depends on how you define help, and just what problem you are hoping to solve.

What problems will activity monitors help solve?

As far as I can tell, these types of activity monitors mainly address the following problems:

  • Families feeling anxious about how an older person is doing. 
    • Activity monitors will let families know if the person is not moving around the home — or using applicances — as usual.
  • Older adults don’t like having to frequently tell their families that they are ok, or mind calls to check on how they are doing.
    • If activity monitors can be relied on to flag a change in status, then phone conversations can instead focus on telling stories, or other conversations that don’t highlight anyone’s anxieties about aging, safety, and possible decline/disability.

It’s also possible that these devices might help older adults feel more secure, knowing that someone will be alerted if they significantly change their activity pattern.

Is there clinical data on how activity sensors in the home actually affect outcomes and quality of life? I took a quick look in the literature and did not find much on outcomes, although I did come across this nice article in The Gerontologist which reviews some issues that clinicians should consider when advising families re smart home technologies. (The author mentions assisting with information gathering, ensuring comprehension, and ensuring voluntariness.)

Back to the original question: will activity sensors in the home be helpful to older adults as they age? Hard to say. The idea of smart homes and connected independence is compelling. And there is something to be said for products that provide some peace of mind.

But presumably everyone is also assuming that when these monitors flag a change in activity, someone, somehow, will intervene in such a way that allows the older person to live a better and more independent life.
In other words, along with reassurance, it seems to me that these products are implying greater safety for our older loved ones. (Kind of the way that those infant sleep monitors imply reduced risk of SIDS when in fact there is no evidence to support this.)

Here, I have to say that I’m a bit skeptical, and if a family asked me for ways to help keep their older loved one safer at home, I might first suggest things like assistance with medication (so many elders are on unnecessary and dangerous medications! and so many elders need to take certain medications daily in order to feel their best), optimizing physical function, reducing fall risk, social activities, and arranging for proper support of ADLs and IADLs. Come to think of it, if you want to monitor activity, why not wire up a medication dispenser, so that you can follow the activity pattern while still helping an older person and her clinical team manage the medication plan?

Bottom line: If an activity monitor isn’t too expensive, it seems reasonable to give it a try and see if it feels helpful. Family caregivers are often quite anxious to know how a loved one is doing, and anything that helps them cope with worry and the other challenges of caregiving should be taken seriously. However, I hope families won’t have overly inflated expectations of safety benefits, unless research demonstrates that outcomes other than anxiety are improved.

What clinicians need to coordinate with assisted living facilities

How could, or how should, clinicians coordinate health care with assisted living facilities?

This is the question I was asked recently, by someone working with a senior living developer. Like many, the developer is hoping to leverage technology for better care coordination, care collaboration, and overall better aging-in-place.

It’s an appealing idea, and we certainly need better coordination of care and information for seniors. But it’s a tough problem to solve, especially when people are residing in facilities.

For instance, as I wrote last fall, I once found myself sending faxes to the PCP, the neurologist, the home healthcare agency, the private in-home caregiving agency, and to the facility itself. Plus I was emailing the patient’s family on the side. And we didn’t even have the hospital transition team involved; although that case was related to an elder doing poorly after hospitalization, by then the patient was well outside the 30 day window of interest to hospitals.

How can clinicians and assisted living facilities coordinate on healthcare for older adults? Sorry, I can’t answer that question yet.

However, what I can do is specify some of the issues that I find myself trying to coordinate with assisted living facilities.

Coordinating medications with an assisted living facility

This probably constitutes the bulk of how most clinicians interface with assisted living facilties. Here are some of the communication issues that often come up in my practice:

  • Requesting a copy of the current medication list, so I can see what may have been prescribed by other providers. Ideally a current medication list would be viewed by clinicians every time a complaint is assessed, or medications are prescribed. In reality however, clinicians often end up relying on outdated/incomplete lists.
  • Discontinuing medications. When patients are having medications dispensed by assisted living, it’s generally not enough to just tell the patient during a visit that they should stop something. Clinicians also need to send an order to the facility. It would, of course, be nice if there were an easy way to double check that a medication had been discontinued as requested (currently requires more phone calls and faxes).
  • Ordering PRN (“as needed”) medications. Ordering is actually the easy part. The hard part is figuring out how patients will voice their need, and making sure that the facility is able to respond. Most of the time, patients and families tell me that they have difficulty getting PRN meds dispensed by facility staff. My guess is that this is because the facility staff are relatively busy, and perhaps haven’t had much training in managing PRN meds. 
  • Requesting a log of how much PRN medication was given. This information is essential if a clinician is to properly adjust a medication regimen and manage symptoms appropriately. 
    • However, I’ve found is often absurdly difficult to get this data, and facility staff are usually puzzled when I ask for it. In fact, the staff at one facility recently told me that their policies forbade them from giving me a copy of the MAR (“medication administration record”), which is the part of the medication chart where staff document when they actually give medications. (Weirdly, the med tech offered to hand write the information for me; I pointed out that this was error-prone and insisted on talking to the nursing director about the policy.)
  • Clarification/confirmation of current orders. Facilities often contact me if they have questions about a new medication order. Many facilities also fax a medication list regularly and ask the primary care doctor to confirm that the med list is correct. (Which can be challenging if the patient has been seeing lots of other doctors.)

Other issues I coordinate with assisted living facilities


Other than medications, I also sometimes try to coordinate regarding:
  • Monitoring of blood pressure. Most facilities won’t check blood pressure every day indefinitely, but they can often manage a few checks over a week or two. I’ve found I often have to remind them to send me the data however. (Same goes for the home health nurses; they are easy to reach by phone and delightful to talk to, however they don’t always send me the information I ask for. Presumably it’s not well within their workflow to send specific info to doctors, whereas sending the [nearly useless] mandated reports IS in the workflow.)
  • Obtaining information regarding the person’s cognitive and physical status. I often want to know how a person has been doing cognitively and physically. Are their mental abilities same as usual, or worse? What kinds of activities of daily living do they need help with, and any recent changes? How far are they walking, and with what kind of assistive device? Facility staff are excellent people to query on this topic, if you can get the right person on the phone.
  • Responding to facility concerns regarding health or behavior. In my experience, facilities usually send a fax when there is an event or change that they are concerned about. (Occasionally they call, but not usually.) I then try to call or fax back, in order to get more information so I can address the concern. The back-and-forth can be time-consuming.
  • Behavioral interventions. This one is very tricky, especially when it comes to patients who are cognitively impaired. Many older patients can benefit from changing their own actions (i.e. timed toileting for incontinence, or a daily short walk to maintain mobility), but they need assistance or reminders to do so. Some facilities are able to provide this kind of behavioral support; others aren’t.

Summing it up


In my own work as primary care doctor and geriatrician consultant for the elderly, I’ve found that most of my communication with assisted living facilities centers around medication management issues. I also often communicate regarding short-term monitoring and to try to get information about the patient’s cognitive and physical function.
Obviously, there are plenty of opportunities for technology to facilitate communication and collaboration regarding the above issues. But it’s also quite challenging to develop something that all the involved parties can and will use. 
Clinicians and others, if you’ve come across technological solutions that work well for the needs listed above, please let me know or post in the comments.

ISO medication apps for dementia caregivers

I’ve been interested in apps for the caregivers of elders, but until recently I’ve also, like many physicians, been too busy to seriously research them or try them out.

(As I noted in my recent post on task management apps, selecting and learning to use an app can actually be quite time consuming.)

Time to change that. No, I’m not going to exhaustively research and review all caregiver apps on the market.

But, as I’ve been invited to give a technology talk to a local group of family caregivers later this summer, I would like to see if I can find a few specific apps or tools that are likely to help caregivers.

As this is an event specifically for younger caregivers, I’m expecting a group of caregivers that is generally comfortable with smartphones.

The care recipients, however, are primarily older adults with dementia. So this is a good match for my geriatrics background.

Which apps should I look for? I’m going to start by looking for apps that can support issues that I spend a lot of time counseling families on. As a major such issue is medication management, I’ll start my app search there.

How I usually advise caregivers on medications

I spend a lot of my clinical time both reviewing medications, and advising families on how to properly handle medications. Here’s what we usually end up discussing:
  • Maintaining an accurate and current list of all prescribed medications is essential. Older adults with dementia tend to see a lot of doctors, and have a lot of medications prescribed. Keeping track of them is crucial because:
    • Many medications have cognitive side-effects. These include sleep medications, allergy medications, overactive bladder medications, and others. (Unfortunately, although all these medications are on the Beer’s list, they continue to be often prescribed to older adults with dementia.) When an elder is getting worse cognitively, or has other complaints, it’s essential to be able to review an accurate medication list.
    • The treatment plan for any medical complaint should only be made after review of a current medication list. 
  • Keeping track of which medications the person is regularly taking is important. There is what’s been prescribed – or otherwise is on the list of biologically active substances regularly taken, many of which may be over-the-counter drugs or supplements — and then there’s what’s being taken most days. Although it can be theoretically be useful to have a log of when every single pill was taken, what is usually most useful is to start with a general sense of whether the patient is taking the drug regularly or not. 
    • For example, many older patients avoid their diuretics because they don’t want to have to pee more often. It’s important to find this out before attempting to increase the dose of blood pressure medication to bring hypertension under better control.
    • In other cases, patients are not taking a medication due to financial considerations, or concern about side-effects, or because their cousin Joe had a bad experience with it. All these issues merit a non-judgemental conversation, which can only get started when clinicians are alerted to the fact that patients are not taking prescribed medications.
  • Keeping track of how often a person takes “as needed” medications is important. These include medications for pain, for abdominal symptoms (heartburn, constipation), and even sometimes insulin. 
    • Reviewing the use of “as-needed” medication is needed to track the progression/resolution of a problem, and to inform future medication adjustments. 
    • Caregivers (and assisted living facility staff, for that matter) routinely underestimate the importance of tracking use of “as needed” medications; I know this because I often get blank looks when I ask how often an older person is requiring their “as-needed” medication.
  • Cognitively impaired older adults often need help remembering to take their medications. They also often need help refilling prescriptions. 
    • This can be a delicate matter, especially for those with only mild dementia who are often resistant to supervision or assistance from others. Still, it’s a real problem.

App features to support dementia caregivers

Given that I find myself repeatedly discussing the above issues with dementia caregivers, I’ll be looking for apps that can support caregivers and clinicians in these arenas. Specifically, I’m looking for apps that:

  • Make it easy for families to maintain an accurate and up-to-date medication list. Ideally this would be easy even if the patient sees multiple providers or uses multiple pharmacies (both situations are common among the elderly). It should also be very easy to enter medications and dosages, as well as update the list.
    • What I really hope to find are apps that don’t require laborious  manual entry of long drug names and dosages. If I can snap a picture of a check, why can’t caregivers snap a picture of their prescriptions and have the medication entered into their list?
  • Make it easy for families to share the list with clinicians. I once had a young caregiver hand me her smartphone, so that I could copy the medication list. Which of course was not formatted for the use of clinicians. (All the meds were organized by “morning meds,” “noon meds,” “evening meds,” which is handy for the caregiver but a pain for the busy clinician.)
    • At a minimum, it should be easy to print a medication list that can be handed to a clinician. Paper is not yet so outdated; every doctor’s office is equipped to scan paper and enter into its electronic record system. 
  • Make it easy for caregivers to track the use of “as-needed” medications. A good tool should treat “as needed” medications differently from the others on the list. I would love to find something that encourages caregivers to note when these “as needed” medications are used. 
    • Bonus if the tool includes a little text field so that caregivers can note how the patient felt after using the medication. (We clinicians need to know whether we are getting successful symptom control or not.)
    • Big bonus if the tool can summarize how much “as needed” medication was used over a given interval, either via text or graphic. I have in the past had caregivers keep time charts to track when they gave pain medication for an elderly person with advanced arthritis, and then found myself laboriously counting how many doses in a day, in a week, all in order to adjust the person’s long-acting pain medication. Surely tech tools can make this a little easier for all involved.
What about features to remind a person to take their medication at specific times of day? I’m interested in this too, but honestly it’s less of a priority to me. This is because I’ve found that when it comes to helping an elder take daily medications, the physical set-up and the establishment of a daily routine end up being very important. Would a dinging device three times daily also help? Maybe. But it’s not what I most want to find for caregivers at this point.
Needless to say, any medication tool for use by older adults and caregivers should be usable by those who have 10+ medications on their list.
Last but not least, I’d like to find tools that are available for both iPhone and Android.
If you have come across any medication apps or tools that you think might meet my criteria, please comment or send me an email.