GeriTech

In Search of Technology that Improves Geriatric Care

alzheimers

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.

The Blue Button output list includes function!

This Blue Button Project just keeps getting more and more interesting.

To begin with, the VA announced this week that patients will now be able to access their progress notes through the MyHealtheVet portal. This is an impressive leap forward for a big institution. Of course, you know me, even though I’m no longer at the VA I still think about the implications for my elderly patients and I have a few qualms, which are posted over at the The Health Care Blog for those who are interested (Six Awkward Concerns in My (Not-Yet) OpenNotes).

So now I’m wondering if the Blue Button Redesign will be incorporating progress notes too. I certainly hope someone creates a user interface in which patients can keep their progress notes and then show them to other clinicians (like me!), and maybe annotate them with their questions.

Then today I discovered this fascinating Blue Button Implementation Guide, which lists the sections that should be included when a patient health record is generated (“if they exist in the dataholder’s system”).

Hold on to your hats, geriatricians.

“Functional and Cognitive Status” is on the list!

Am I the only geriatrician who didn’t know this? Doesn’t matter. I did a little dance of joy when I read this, then I fell to my knees and bellowed “praise the innovators!”

Then I thought wait a minute. Which EMRs are capturing functional and cognitive status in their structured data fields? And who is entering the data, and based on what information?

I’ll try to find out more about this in the coming weeks, as it’s interesting to think about how to systematically — and accurately — capture this very important data.

In the meantime, I would love LOVE to hear from anyone who’s working with an EMR that currently captures this data. I imagine PACE programs such as OnLok are doing it, but whom else?

How the new brain scan for Alzheimer’s could help, and won’t help

There’s
a powerful new Alzheimer’s diagnostic test (the new brain scan) on the block, and now we’re all
going to have to decide if we want to use it or not. (My colleagues at GeriPal.org seem generally skeptical.)
This
is an especially relevant question for a outpatient geriatrician like me: I’m
often confronted with the complaint of memory problems, I do a fair amount of
diagnosing dementia (usually on my own, with the occasional referral to a
memory clinic or neurologist), and I do a lot of counseling of patients and
families, usually over the span of months to years.
In
other words, I field memory complaints and dementia diagnosis as they appear in
the primary care clinic, and with the aging population surging into Medicare, I
essentially do what front-line generalists will need to do for millions of
elders over the next 10-20 years.
So
would I order this scan, for someone with memory problems? How would this help
or hinder me, and the families I’m trying to help? What kinds of benefits and
harms will we get for the extra cost of this test, given that there is
currently no cure for Alzheimer’s and not even any reliable ways to slow the
progress of this devastating disease?
A  recent NY Times article highlights these questions, and features some of the first private patients to have the new
scan. It’s a good story, and if you haven’t read it yet, you should.
But
it’s the story of trying to confirm the presence or absence of Alzheimer’s
disease.
Whereas
in my world, the story is about how to help people with memory impairment. Which
is not quite the same story, and involves slightly different questions. In
particular, I don’t just think “Is it or is it not Alzheimer’s?” What I think
about is:
  • Is this
    dementia?
    With patients, I usually explain that dementia means developing permanent
    brain changes that make memory and thinking skills worse, to the point
    that daily life skills are affected. I then explain that Alzheimer’s is
    the most common underlying cause of permanent brain changes. 

  • Is anything
    making this person’s cognition worse than it would otherwise be?     It’s
    especially common to find that medications (such as benzodiazepines for sleep) are making older people worse. Several other medical conditions
    (i.e. hypothyroidism, depression) can worsen cognition and should be
    checked for as well.

  • Any special
    neurological features that I should make note of?     I briefly
    check for signs of parkinsonism, hallucinations (common in Lewy-Body
    dementia), or neurological changes suggestive of subtle strokes. But
    otherwise I don’t spend too much time trying to pin down the underlying
    dementia, unless something strikes me as distinctly odd. Overall, I find
    the principles of helping patients and families with dementia are
    basically the same for the most likely causes of dementia (Alzheimer’s,
    Lewy-Body dementia, vascular dementia).
The
patient and family, of course, have their own questions and concerns. They
certainly do often ask if it’s Alzheimer’s. But we shouldn’t answer that
question too narrowly. Many people don’t understand the difference between
Alzheimer’s and dementia (I’ve had people tell me “Thank God it’s notAlzheimer’s” when I broke the news of likely dementia). But overall, what scares
them is the specter of progressive cognitive disability.
Most
of all, in my experience patients and families want to know:

  • What
    is going on?
  • What
    should we expect for the future? 
  • Will
    this get worse? How fast?
  • What
    kind of help is there? Are there treatments?
  • How
    will we manage?

Back
to the article. What would’ve happened to those patients if they hadn’t had the
scan? And what is still left undone or unresolved after the scan?
Consider
Awilda Jimenez, the woman featured at the start of the Times story, who becomes
forgetful at age 61. Here’s how things usually unfold when I see someone like
her:
  1. I make a preliminary assessment of cognitive
    abilities.     I use a combination of office-based cognitive test, like the
    Montreal Cognitive Assessment, and asking about function, especially IADLs like finance and driving. The article doesn’t say how Ms. Jimenez scored
    on these (one hopes they were checked before offering her the scan), but
    it’s not uncommon for someone with early Alzheimer’s to score 24 on the
    MOCA and have problems with memory and finances.
  2. I also look for exacerbating factors, like
    medication side-effects, or other illnesses.     Let’s assume I find none.
    Let’s also assume the neuro exam is generally benign (other than the
    thinking problems).
  3. I then explain to the patient and family that
    there does seem to be evidence of problems with memory and thinking.     If
    the problems are fairly prominent, we start to discuss the diagnosis of
    mild dementia, and that it’s probably Alzheimer’s. If the problems are
    subtle and things feel inconclusive to me, or if the family wants more
    evaluation, we talk about referring for neuropsychological testing, to get
    further insight into the cognitive problems.
    • Let’s say the neuropsychological testing comes
      back indicating deficits; a common conclusion is that the findings “may
      be consistent with an early dementia such as Alzheimer’s.” Then I get to explain to
      patient and family that it’s probably dementia, probably Alzheimer’s,
      could be vascular or another, generally slowly gets worse but occasionally
      seems to stop
  4. Let’s see how this evolves. I almost always end up telling families that we will need to see what
    happens over the next 6-12 months. 
  5. Practical strategies for right now. I coach families on avoiding
    psychoactive medications and other common causes of delirium. I also encourage them to look for dementia support groups, and try to point them towards resources for learning more about living with dementia.
In
other words, as things currently stand, evaluating memory impairment in someone
who’s early in the dementia process often ends up with our telling patients
that they probably have something bad: mild dementia, most likely Alzheimer’s.
This
uncertainty is frustrating for clinician and patient. (It’s even worse when the
deficits are in the range of mild cognitive impairment, or in that “is this
affecting daily function?” gray area.) So it seems that the new brain scan
should be a boon, with its ability to give a definite yay or nay on whether
Alzheimer’s is present.
Today,
patients and families can cling to the hope that maybe it’s not Alzheimer’s,
maybe it won’t keep getting worse, maybe it’s something else. I have seen
patients and families resolutely set aside the possibility of Alzheimer’s (why
dwell on the possibility of something horrible coming into your life), and
other families obsess over the issue for months. 
Regardless of which approach
they take, in most cases, the cognition keeps getting slowly worse, and 1-2
years later the family is enmeshed in caring for someone who has become quite
cognitively disabled. At that point, they are trying to survive and we clinicians
are trying to help them maintain the best quality of life possible.
Back
to the new scan. I would briefly summarize the benefits and burdens as follows
(for patients in the mild/early stage of symptoms): 
Benefits:
  • Reduces period of clinical uncertainty for
    those patients who in fact have Alzheimer’s.
    • With a positive scan, families could more quickly move into grieving, acceptance, and hopefully planning for the
      upcoming challenges. (Engagement!)
    • Although there is no cure and drugs don’t
      tend to delay progression very much, clinicians can and should focus on the many ways to optimize
      the person’s function. Caregivers can focus on getting from coaching and support.
      Other clinicians should be alerted to the diagnosis and modify their work
      accordingly.
    • A negative scan in someone with
      symptoms would presumably spur a search for the real problem.
Burdens:
  • Takes a fair bite out of the payor’s wallet.
    Currently the scan is paid for out of pocket.
What the scan doesn’t do:
  • Offer an explanation for cognitive impairment
    in those patients who don’t have Alzheimer’s.
  • Identify co-existing vascular disease or other
    cause of progressive dementia.
  • Identify and modify factors worsening
    cognition, like medication side-effects or other illnesses.
  • Tell patients how quickly their dementia will
    progress, and what kind of help they will need in a year. The progression
    of Alzheimer’s is highly variable from individual to individual.
  • Provide dementia education and support to family
    caregivers.
In
short, whether we’ll benefit from the scan really depends on how much families
and clinicians benefit from eliminating that period of uncertainty, as well as
on our ability to provide good dementia evaluation, management, and support to
patients and families. 
Unfortunately
most dementia patients currently get sub-optimal medical care, and their
caregivers get inadequate coaching and support. 
If the scan helps bring people to the resources they need earlier, and
more effectively, I’ll be for it. But if it turns yet another radiologic money
suck and everything else continues as usual, I’ll be disappointed.

In a nutshell:

The pragmatic outpatient evaluation of someone with memory complaints involves much more than answering the question of whether or not there is Alzheimer’s pathology in the brain. 

However, using the new scan to get an answer to that question sooner rather than later could eliminate a lot of the uncertainty and watchful waiting that families and clinicians currently experience. 

If (and this is a big if) this helps patients and families access better dementia care sooner, the brain scans could be quite beneficial.

[Interested in Alzheimer’s diagnosis? Here’s a related post: Four things people with possible Alzheimer’s really need.]