Individually Grouped

I wrote an article a few years ago talking about the benefits for residents in long-term care who belong to a performing choir.  Well, actually, it turns out that belonging to almost any group can bring positive results.  And … oh, yeah … we aren’t doing groups right now.  That’s too bad, because feeling included in a group does help prevent loneliness.  Feeling included in a group can also lead to perseverance.  That’s a claim that David DeSteno makes in his book, “Emotional Success” (133).  Who cares about perseverance?  Everybody is concerned about the loneliness pandemic, not the loss of perseverance.  But as an activity professional, I can assure you that perseverance is a big issue in senior care quality of life.  It takes perseverance to keep a life from imploding.

DeSteno points out that perseverance is future-oriented (69).  It’s actually a measurable behavior calculated to improve the future as opposed to the short term.  When our residents lose perseverance they no longer value the future enough to make it better.  You know the quote, “Old age sure ain’t for sissies.”  It takes perseverance to get out of bed.  It takes real perseverance when you live in a long-term care facility.  Where I used to work, the CNAs would shake their heads and say so and so is “in the bed.”  Not a good sign.

Pride is another topic DeSteno deals with, the good kind of pride that leads to intrinsic motivation.  When you do something that your group considers valuable, they will let you know.  When you are aware of their approval, you feel pride in your efforts, and your sense of pride will motivate you to cultivate the skill that won the approval (118).  The group wins and you win.   We entered our resident choir in the county-wide senior games in 2018.  They were competing in front of their active peers still out in the community.  When our choir got a standing ovation, something good happened.  The choir members were invested before, but practice became more serious.  Some of them had become focused on being ready for the next year’s competition.  Group inclusion and pride encouraged perseverance.  The future was being valued.

But now, I can’t get my whole choir together to practice.  Depending on the current quarantine restrictions, I could get a few people at a time … or not.  Out in the world, I did see that some folks found a work-around.  They were using multi-screen technology.  They video-recorded individuals singing the same song and then put them together.  Huge choirs of individually recorded voices.  You’ve probably seen them on YouTube or Facebook.  Could we do that in a small assisted living unit?  The short answer is, “Yes.”  We’re testing the “Acapella” computer app that lets us record 9 people individually on an iPad.  Each track is added to the ones recorded before.  When you’re done, you see and hear 9 people singing “together.”  

Ah, but this wasn’t done as a group. I figured it would be fun for the residents and their families to watch, but it would not produce the documented benefits of group activities.  That was before I read “Emotional Success.” On page 150, DeSteno describes an experiment done by Gregory Walton and Geoffrey Cohen at Stanford.  Their subjects worked alone.  Some were told they were part of a group, though they had never met this group.  Others were told they were working by themselves. The results showed that even just telling you that you are a member of a group and that you are helping the group achieve some goal is enough to make you persevere more at a task.  And my assisted living residents have much more social connection than that.  Our choir has a history.  Yes, even singing “by themselves” can help them be motivated to persevere.

©Donna Stuart, ADC August 17, 2020

DeSteno, David. Emotional Success. New York: Houghton Mifflin Harcourt, 2018.

Walton, G. M., Cohen, G. L., Cwir, D., & Spencer, S. J. "Mere belonging: The power of social connections." Journal of Personality and Social Psychology (2012): 102(3), 513-532.

Driving Alone

In a previous blog, I reviewed the book, Don’t Retire/Rewire, by Jeri Sedlar and Rick Miners.  Their descriptions of “drivers” aka personal motivators still resonates with me.  They identify eighty-five drivers (Appendix C) and then narrow it down to 30 main ones on p. 61.    Drivers are tied to the concept of what makes an activity meaningful.  Activities that match our personal drivers will be more satisfying than activities that merely keep us busy.  “Drivers are the key to satisfaction,” the authors state (56).

However, as this book describes, most of us are stinking bad at identifying our own drivers, much less figuring out how to fulfill them.  Indeed, the authors have to put their clients through a multilayered regimen of self-analysis in order to elicit a list of personal drivers and their applications.  These clients are typically alert, oriented, successful in life, and self-motivated.  And they’re reaching out and paying a lot for this service.  Why?  Because without expert coaches, they can’t tell you what their drivers are or how to satisfy them.

No wonder we in LTC have trouble providing person-centered activity programs for actual persons.  The MDS questionnaire and the average activity history form hardly measure up to the process that Sedlar and Miners use to help their clients assess themselves.  Like their clients, many of our residents don’t really know what they want, so how can they tell us?  We don’t have the data, or the tools to get the data, up front.

I am intrigued by residents who choose to isolate themselves.  It seems like there are many factors that lead to that lifestyle, not just one pattern.  For some it has more to do with physical limitations: vision, hearing, mobility, dexterity.  For others, there may be more of an emotional/cognitive cause.  I once had a resident who chose to sit and stare at the wall of her room because she felt she couldn’t hear well enough to participate in group activities.  (Thankfully, she learned to go outside on the enclosed patio and enjoy the fresh air.)  But I’ve been adjusting my thinking about these folks since reading this book.  According to Sedlar and Miners, there are still drivers at work here, drivers that could help each person achieve greater quality of life.  Ironically, some of the drivers are actually driving the self-isolating behavior.  For instance, residents who insist on isolating are expressing power over their circumstances.  Having a sense of “power” is a driver.  We all know what powerlessness feels like.  There are residents who realize they don’t understand what’s going on around them.  Some of them want to sit in their recliner with the curtain drawn.  They’ve figured it out – that’s how to have a sense of structure in their environment.  Leaving that behind might make them feel too vulnerable.  Being able to solve problems and needing a sense of structure are both drivers.  Person-centered/directed care should lead to more drivers being identified and satisfied.  I want to use my understanding of drivers to help reach more residents.

From 1:1 interviews, Sedlar and Miners found that ”the happy people had either intuitively known what their drivers were and fulfilled them with new activities after they retired, or they discovered how to satisfy them through trial and error” (60).  But, of course, not everyone intuitively makes the best choices and not everyone is willing to try again when they fail.  Many of their clients would say that they “flunked” retirement (3) because they initially chose activities that did not satisfy and left them feeling frustrated.  A common example the authors cite is of clients who planned to spend all their time “having fun” when they retired:  playing golf, relaxing, etc.  It didn’t take them long to realize they were bored and wondered why retirement was not as enjoyable as they’d hoped.  Our residents might have already experienced this type of failure before they came to us.  Some of them still haven’t figured out how to choose or ask for activities that provide fulfillment.  It is a short step from there to make the assumption that no activity can satisfy.  Might as well stay in the room.

People intuitively compare the past and present, and the comparisons can be pretty depressing.  You could even call it a survival response, to avoid putting yourself into a situation that might generate thoughts like comparisons.  To residents struggling just to survive in a facility when their health, competence and autonomy are compromised, the added threat of depressing comparisons is just that – a threat.  You can’t exactly recreate a past activity, done by a healthy and independent individual, for a sick and/or dependent person.   Putt-putt in the activity room will never be the same as the foursome on the golf course.  For some, it would be a pleasant tie-in to a past hobby.  For others, it would be a depressing reminder of lost strength.   I am always recruiting for our resident choir.  Some of the holdouts are the ones who used to have the best voices.  “I can’t sing anymore,” they’ll say.  I’m thinking that drivers like the identity, prestige, and recognition as a good singer are lacking, and with them the motivation to risk joining the choir.

So, self-isolating, or refusing activities linked to past pursuits, might both be related to attempts to fulfill drivers like the need for authority, identity, power, structure, problem-solving, and self-esteem.  That would be why they are so hard to counter.  We talk of sensory or cognitive stimulation, but it sounds like we need to provide enough stimulation to satisfy drivers as well.  I know CMS wants assessments and care plans done quickly, but figuring out drivers will take more time.  It will take multiple small successes of trial and error.  It will also take a trust relationship.  We’re talking about risk-taking and a change in mindset.  And most of us don’t like either one.

©Donna Stuart, ADC   October 22, 2019

Sedlar, Jeri and Rick Miners. Don't Retire Rewire! 3rd Ed. New York: Alpha Books Penguin Random House LLC, 2018.

Godzilla vs. King Kong

King Kong and Godzilla faced off above the city skyline.  With his teeth, Godzilla rips a hunk from the skyscraper, flinging it in Kong’s direction. Kong bats it away, sending it spinning down onto the city streets below where mere humans, trapped in the drama, scurry helplessly.  It’s been like that.

Keeping up with the news stories on the pandemic the past year and a half, you may have noticed there seemed to be two major threads.  I’m not talking about “it’s the end of the world” vs. “it’s all a myth.”  I’m talking about the droplet vs. aerosol transmission controversy, asking the question, how does the virus pass from one person to the next?  Does it primarily pass via particles that quickly fall to the ground or to a nearby surface, or can it linger in the air, potentially travelling longer distances before infecting someone?   

The CDC and WHO mostly represent the medical profession and the research generated by the medical profession.  They have their turf.  But there are other relevant professions out there, physics, engineering, etc., and those whose work span multiple disciplines. When one group doesn’t acknowledge the other, it’s more than just a turf war.  It could be tens of thousands of seniors dying.  It could be the seniors we loved and cared for who died.

Public health policy, coming from the CDC and WHO, camped on a historical view of the droplet transmission side with its hand washing and six foot social distancing. They only tended to consider aerosol transmission during certain specific medical procedures, such as intubation.  But there were impressive studies showing that aerosol transmission was happening in other more normal settings. This is a serious difference.  A life and death difference.  Hand washing and a mere six foot distance wouldn’t be enough to prevent aerosol transmission.  Ventilation has to be addressed.  Maybe that’s why when COVID got into our facility, we were helpless to stop it.  Our building was not designed to prevent aerosol transmission.  While we were washing our hands, wearing non-N95 surgical masks and nagging the residents not to sit near each other, was the virus wafting slowly down the hallways behind us?  

Wired magazine published an article by Megan Molteni, entitled The 60-Year-Old Scientific Screwup That Helped Covid Kill, on May 13, 2021.  She documented some of the back and forth drama that was taking place over our heads.  According to Molteni, the medical profession had taken some numbers that applied to tuberculosis and coal mine dust and, for the 60 years up until now, applied them incorrectly to almost all respiratory germs.  Look up all the places where 5µ had been named as the particle size cutoff point for aerosols.  Anything bigger was assumed to only travel through the air in droplet form.  Now substitute the 100µ size that might actually go aerosol. Quite a difference.  Unfortunately, the 5µ mistake had become so entrenched that it was like heresy to the medical profession to challenge it.  

It was April 3, 2020, when a group of scientists arranged a Zoom meeting to formally challenge the WHO about droplet transmission.  It was March of this year, when the the WHO issued ventilation guidelines.  In June, the the CDC issued theirs.  Both finally acknowledged that the other sciences might be right, that aerosol transmission might be a culprit in the spread of COVID outside of the intensive care unit.  So, the question is at what point did the threads merge to produce coherent policy that would help us protect our residents?  Answer:  they haven’t yet.  The vaccines arrived before Kong got on the same side as Godzilla.

©Donna Stuart, ADC July 20, 2021

https://www.wired.com/story/the-teeny-tiny-scientific-screwup-that-helped-covid-kill

And Out Comes Happiness

There are some old songs from the time of the revolutionary war.  The victorious colonists took “Yankee Doodle” as their theme song, but when Cornwallis’ army was marched out of Yorktown in defeat, the fifes played “The World Turn’d Upside Down.”   This is how it goes:

If buttercups buzzed after the bee,

If boats were on land, churches on sea,

If ponies rode men and the grass ate the cows,

Then cats should be chased into holes by the mouse … (Luther 39-40)

You get the idea.  The underfunded, undertrained, outnumbered Americans had managed (with a great deal of help from France) to beat one of the best armies in the world.  It was devastating.

How many of you are feeling the same way about the COVID-19 quarantine situation?  Almost everything we were doing on purpose as activity professionals has become taboo or turned “upside down.”  Group socialization is good for the residents – no, it is dangerous.  Human touch is good for them – no, it is dangerous.  Getting out of their room is good for them – no, it is dangerous.  Singing together is good for them – no, it’s dangerous.  Visitors are good for them – no, they’re dangerous.  Assisting someone so they can be successful with a craft is good – no, you’re standing too close.  Loners are more susceptible to depression, etc. – no, they’re safer from the virus.  It seemed as though I could feel the gears in my brain screeching to a slow stop.

I could not get a picture in my brain of what the future of activities would be like.  What I could imagine looked pretty grim.  We started trying different things on the units, but it was not the same quality of life for my residents that I had been striving for these past years.  If we couldn’t provide quality of life, then what was the purpose of providing care?  Visions of the “bubble boy” came to mind.  Would it be possible for my residents to ever find happiness again, given the issues with the pandemic?

I obviously needed some outside input.  The Bible actually has a lot to say about happiness.  Useful stuff.  Some 2,700 related passages (Alcorn 19)!  I also began cruising the online TED talks.  Each TED talk is officially 18 minutes of presentation by an expert on a topic that expert is passionate about.  One of the first things I found was a 2004 talk about happiness entitled, The Surprising Science of Happiness, by Dan Gilbert.  He was describing the results of large-scale cognitive science experiments on how the brain functions.  2004 was before COVID-19.  It was even before the economic crash of 2008.  Would there be anything useful in it?

Gilbert states that the pre-frontal cortex of our brains has the ability to simulate experiences for us before we have them.  We call that imagination.  However well that works, he says the problem is that we are not so good at predicting how those simulations would affect us if they came true.  That is called the “impact bias” (TED, 2004).  He offers the example of imagining winning the lottery or else becoming a paraplegic and estimating which one would make you happier.  Well, duh, you say.  But the actual data from people who have experienced one or the other shows that neither set of individuals is particularly happier one year later.  Your prediction was, predictably, biased by lack of understanding of how your brain works.

So, what happened?  How could these two radically different scenarios result in a similar outcome?  Gilbert again explains that our brains have the tendency to change how we view our situation in a way that lets us feel better about it.  He says that we “synthesize” happiness with what he calls our “psychological immune system” (TED, 2004).  Whoa! Did he say something about an immune system?  Well, that certainly is timely.  And immunity to permanent devastation related to a bad situation sounds pretty useful.  How you look at something really does make a difference.  Actually, Gilbert says that except in certain types of cases, most outcomes even out after about 3 months!  The average natural happiness from what looks like a happy situation will tend to equal the average synthetic happiness from what used to look like a bad situation.

As a matter of fact, I think I have observed this very process at work in our building.  Two and a half months ago, the residents were not happy to be losing access to family visits, communal dining and group activities.  They became more upset as time went on.  Then I began noticing that there was more acceptance.  A new normal was setting in.  In fact, staff seems to be having more trouble adapting than the residents themselves.  A co-worker wondered if I was struggling because of the loss of control over my part of the activity program.  Well, yes, but hadn’t the residents also lost even more control over their own lives?  Gilbert might have an answer for this, too.  He describes other experiments that prove we synthesize happiness the best when we have no choices (TED, 2004).  Apparently, choices produce second-guessing which tends to rob us of happiness.  Staff is doing the second-guessing while the residents are busy adapting. 

So, yes, both faith and science tell us that our residents can find happiness in a quarantined world.  Some of us would say it’s a gift that God ‘hard-wired’ in.

©Donna Stuart, ADC   May 31, 2020

Alcorn, Randy. Happiness. Carol Stream, Illinois: Tyndale House Publishers, Inc., 2015.

Gilbert, Dan. (2004, February).  The Surprising Science of Happiness.  [Video File].  Retrieved from https://www.ted.com/talks/dan_gilbert_the_surprising_science_of_happiness

Luther, Frank. Americans and Their Songs. New York: Harper & Brothers Publishers, 1942.

Driven From Distraction

Part I

What kinds of problems do older people face?  Principle #1 of the Eden Alternative states that,  

“the three plagues of loneliness, helplessness, and boredom account for the bulk of suffering among our Elders.”

Do we think this only applies to the residents we see in the long-term care setting?  Jeri Sedlar and Rick Miners are thought leaders on retirement issues.  You might have seen them on The Today Show.  In their book, Don’t Retire Rewire! they discuss their 25 years-worth of experience interviewing and coaching people through the retirement process.  Their conclusion?  Loneliness, helplessness, and boredom are not just problems in the nursing home setting.

According to Sedlar and Miners, people face the potential of boredom at all different stages of life, but especially at retirement.  That can be due to poor planning and misconceptions about themselves and their own needs.  

“Boredom was one of the biggest complaints we heard in our research, and not just from Type A personalities or hard-charging executives” (24).

They also talk about people unexpectedly missing the camaraderie of the office and the sense of accomplishment they enjoyed at work. 

“In our experience working with clients, people underestimate the things they like about their work” (25).

Many of the clients they mention are in their 50s and early 60s.  The way I figure it, all my residents are in retirement.  It is just the location of their retirement that makes us look at it differently.  Most of us will live long enough to face retirement.  And everybody, it seems, needs to plan ahead to prevent boredom, loneliness and helplessness from taking over their lives.  Wake-up call, anyone?

The authors discuss the different opportunities people have to find meaning when transitioning away from their mid-life careers.  In today’s economy, many choose to continue some kind of work, even if it is not for pay.  Among all the options for post-retirement lifestyles,

                “… retirees repeatedly returned to the theme of wanting meaningful work.  There is no universal definition of meaningful, as each of us defines it in our own way.  They wanted to be engaged in activity that was meaningful, not just activity for activity’s sake” (24).

Again, the folks at the Eden Alternative agree, stating in Principle #6 that,

“Meaningless activity corrodes the human spirit. The opportunity to do things that we find meaningful is essential to human health.”

CMS takes a stab at defining “meaningful” with its Guidelines and Intent for §483.24(c)(1):

“Activities are meaningful when they reflect a person’s interests and lifestyle, are enjoyable to the person, help the person to feel useful, and provide a sense of belonging.”

“To create opportunities for each resident to have a meaningful life by supporting his/her domains of wellness (security, autonomy, growth, connectedness, identity, joy and meaning).”

I have seen descriptions of some of the assessment tools available to recreation therapists.  These instruments claim reliability in measuring things that pertain to meaningfulness, things like attitude, interest, satisfaction and motivation for leisure activities.  I am curious about how they do that.

Sedlar and Miners tie what is “meaningful” to the satisfaction of what they call “drivers” or “personal motivators” (55).    Drivers represent the “psychic rewards” we get from any activity, whether working a job or socializing with friends.  It’s what we get out of a job besides money (59-60).

“You fulfill your drivers (which are internal) when you take part in activities (which are external)” (67).

Drivers are fairly subjective and the authors encourage their clients to personalize them.  CMS was actually naming drivers in §483.15(f)(1): enjoyment, making a difference (usefulness), and belonging.   The Eden Alternative talks of Domains of Well-Being, which were used as part of the CMS Intent statement and parallel many of the drivers listed by Sedlar and Miners.  For me, my main driver is probably accomplishments – I thrive on the part of the activity job that lets me design and carry out a variety of activities that actually succeed.  The duds, not so much.

I know I’ve found, by experimenting with my activity program, that you can work the drivers without necessarily re-creating past activities for people.  New or substantially tweaked activities might work just as well or better than activities directly based on past interests because there is not as much negative baggage associated with the lack of independence in performing them.  That is, if you’ve never done something before, there is no “past life/independent you” experience to compare it to.

But it’s not just the novelty of your residents experiencing a new activity that gives it value.  A new activity needs to resonate with the residents’ drivers.  For instance, when my residents collaborated on painting wood pallet murals, it was a new activity for all of them.  Most had never attempted to paint a picture since leaving school, much less a large mural.   What drivers did that activity hit?  I was going to list them, but it turned out there were potentially over 32!  Not every participant had all or even most of these drivers, but there was a good chance of some connection with a few of them.  Another program that has worked for me is tying my resident choir into the local county Senior Games.  None of the resident choir members had sung competitively before.  Many had sung in a church choir, but most hadn’t performed in front of any other type of audience except church.  It was a big stretch for them and for our facility in pulling it off.  But the reading on the “meaningfulness meter” shot off the scale.   It was good.  Residents are still periodically wearing the gold medals they won last year, and will tell you how proud they are of them.  So we did it again this year.  And now the residents are talking about next year.  I tallied up 24 “drivers” that might be involved:  accomplishments, action, belonging, fulfillment, competition, creativity, experiences, fulfillment, outside/community opportunity, goals, identity, intellectual stimulation, lifelong learning, making a difference, passion, people, prestige, problem-solving, recognition, self-esteem, skills & talents, social, structure, value, and visibility.  Yeah.

I’m going to try to do another blog post on this topic in the near future.  I want to focus on the implications of drivers relating to individual care-planning and the residents who choose to isolate.

© Donna Stuart, ADC     July 5, 2019

https://www.edenalt.org

CMS Requirements of Participation for Long-Term Care Facilities §483.24(c)(1) (as provided by https://www.nccap.org/assets/docs/F-TAG%20679%20ACTIVITIES.pdf – because after several hours of searching, I sure couldn’t find it in a recognizable form on the CMS website, bless their hearts)

Sedlar, Jeri and Rick Miners. Don't Retire Rewire! 3rd Ed. New York: Alpha Books Penguin Random House LLC, 2018.

Undoing the MDS Project

“While you are in this facility, how important is it to you to …?”

“Very important.  Somewhat important.  Not very important.  Not important at all.  Important but can’t do or have no choice.”

I’d like to turn that question around …

“As an activity professional, how important is it to you to use up to date interview techniques that directly generate meaningful information about your residents?”

1. Very important (If I’m going to be held accountable for the numbers generated by the MDS, I want them to reflect reality.)
2. Somewhat important (I’m kind of tired of residents telling me things that are the opposite of what their activity choices will be.)
3. Not very important (Don’t know, don’t care.)
4. Not important at all (I truly don’t mind wasting a lot of time to satisfy the folks at the Center for Medicare/Medicaid Services.)
5. Important but can’t do or have no choice (The system is crippled, but nobody cares what I, a lowly AP, have to say about it.)

Back in the 1950s, a fledgling psychologist named Daniel Kahneman was given the job of evaluating the new soldiers in the Israeli army.  They had been using interviews, but the results were pretty meaningless.  They didn’t help predict how the soldiers would perform.  Sound familiar?  So, he designed a new type of interview.  Michael Lewis describes the situation in his book, The Undoing Project.

“He [Kahneman] told them to pose very specific questions, designed to determine not how a person thought of himself but how the person had actually behaved” (80).

Suddenly, they were generating more meaningful data, data that had predictive value.

In the 60s and onward, Amos Tversky joined Kahneman to study how people make decisions.  Again, Lewis describes their findings:

“When people make decisions, they are also making judgements about similarity, between some object in the real world and what they ideally want” (114).

Residents in long-term care are asked to make decisions about which activities to participate in.  At that point, they are making judgements about the activities offered compared to what they ideally might want.  But judgements about similarity, Lewis continues, are related to the features we choose to compare, like how noticeable they are, the context we see them in, and how our brains classify them.  For instance, a resident who likes music might chose to skip a group music event because “it’s for old people who have lost their minds.”  He knows that other seniors, ones with memory/health issues are likely to be there.  However, if his room is close enough to the event, he might hear the music and excitement, change his mind, and show up.  Or not.  Decision-making is highly subjective and can change at any moment.

Tversky and Kahneman also realized that people make decisions based on the potential loss or gain they associate with the decision.  But to use potential loss vs. potential gain you have to start at some “reference point” of how you value where you are right now.  The problem is that the reference point can also vary.  It is basically a “state of mind” (275).  I don’t know about you, but my state of mind changes all the time.  I have good days and bad days, good moments and bad moments.  I remember skipping a good friend’s wedding back in the days when I was single.  It was only at the last minute that the prospect of sitting through a lively Polish wedding reception with no date suddenly sounded like a more of a downer than I wished to risk.

In the 1980s, I was in graduate school studying sociolinguistics.  We were trying to find out which language people would tend to use, and for what reasons, in societies that were multilingual.  Some languages enjoy higher prestige.  Some languages provide more credibility on the street. “Do not base your data on self-reported language preferences,” my professors told me.  Instead, we read about ingenious work-arounds that linguists use to ferret out when, where and why people choose to use one language instead of another.  I have interviewed people who claimed to always use a certain higher status language.  Only when pressed did they admit to using a lower status language for some situations.  Self-reported language use is more about self-image, than fact.  I suspect that the self-reported importance of religious participation also often falls into this category.  It’s a normative, a “what should be”, rather than what is.

Even major league baseball and basketball have learned to upgrade the metrics they study.  These teams compete during games, but they also compete to sign the best players.  Lewis documented how the 2002 Oakland Athletics baseball team competed successfully against teams with much more money to hire new talent.  They found that the normal statistics that scouts had been using failed to predict future performance.  The Oakland A’s knew what to look for and could get those players more cheaply because the big teams were overlooking them.  I wonder what metrics we could come up with that would more accurately predict future activity participation. And what if what is important to US, and what WE prefer, is more relevant to their participation than any data we could get from the residents themselves?

Do our residents maximize their utility?  Short answer – no.  “Maximizing utility” means that people will reliably attempt to get the most value for their expenditure, the most bang for their buck.  In the case of activity programming, it could mean the most happiness for the expenditure of time and energy.  Kahneman saw that economists lagged behind the psychologists because the economists

“…assumed that you could simply measure what people wanted from what they chose.  But what if what you want changes with the context in which the options are offered to you?” (278)

Just because someone used to enjoy doing something independently doesn’t guarantee they will want to do it with our “facilitation,” or in the nursing home environment at all.  Ever.

Lewis summarizes Kahneman’s conclusion about maximizing utility.

“…people’s anticipation of happiness differed from the happiness they experienced, and … both differed from the happiness they remembered.

… If happiness was so malleable, it made a mockery of economic models that were premised on the idea that people maximized their utility.  What, exactly, was to be maximized?” (351).

In 2001, Kahneman, the psychologist, won the Nobel Prize in …economics!

Scientists, psychologists, linguists, statisticians, sports analysts, and economists, have found that people in general are systematically irrational in their thinking processes and choices.  We don’t really know why we do what we do.  Making irrational choices is not an aberration.  It is normal.

Fast forward to 2018, and CMS still has us ask our residents to self-report on their activity preferences in the absence of any observable behaviors.  That is the MDS 3.0.  Then we are expected to relate that to the activity decisions the residents will actually make.  That is the activity care plan.  Then we are held accountable for any pattern of discrepancies between the MDS 3.0 and the residents’ actual behavior.  That generates a CAA and potentially a flag.

I know it’s possible to make lemonade out of a lemon and use the MDS interview to also generate a certain amount of activity history.  But that doesn’t make up for the amount of time and energy that CMS wants us to waste on the quest for that precious #1 – 5 that we have to try to coax from the residents.  There are better ways to get an activity history.  There are better ways to develop care plans.  And there are better ways to help activity professionals and residents develop good activity programs.  My activity director gave me a chuckle and a quote for this paper when she wrote to me that, “I am blessed to have you on our ALF actively engaging those folks into things THEY never knew THEY wanted!”

What am I saying?  Activity professionals are made to use methodology that is as much as 60 years out of date.  We are held to bad science that academics who study human behavior have spent whole careers discrediting.  There is a big difference in why our residents do things as opposed to why they think they do them.  Study after study has shown that nobody is a rational decision-maker.  So, who at CMS still thinks that you generate meaningful numbers by asking our residents “how important” something is?  And how long are we going to go along with it?

©Donna Stuart, ADC        January 21, 2018, 2019

Lewis, Michael. The Undoing Project. New York: W. W. Norton & Company, Inc., 2017.

https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/NursingHomeQualityInits/Downloads/Archive-Draft-of-the-MDS-30-Nursing-Home-Comprehensive-NC-Version-1140.pdf

Who Did You Say?

Anybody need a little help second-guessing themselves today?  I think I have the book for you!

When I write my blog, I typically summarize what an author has said and relate it to senior care and the activity profession.  In this case, I had some difficulty in summarizing the book “A Stitch Of Time,” by Lauren Marks.  Her wording is so precise and meaningful that “summarizing” ends up muddying the prose rather than simplifying it.  What makes this remarkable is that the author is the survivor of a stroke which left her aphasic.

Aphasia isn’t rare.  Somewhere around a third of stroke victims will experience aphasia, an impairment of language involving speech and/or comprehension of speech, and possibly reading or writing.  From the Greek a “not”+ phanai “speak.”  Other sources of brain trauma or disease can also lead to aphasia.

We might think of language as simply a tool for communication with other people, but it is much more.  We also use it to communicate with ourselves.  Marks talks about the uses for external language and internal language, that inner voice that you use to ask yourself questions or sort and label thoughts.  She explains, 

“Language is wrapped up with our current and remembered sense of identity.  We assign certain words to an experience, and some of them become part of our telling and retelling of the event – the script of our lives” (vii).

And,

“We use words to describe ourselves to others, but also to describe ourselves to             ourselves.  This makes language and memory often inextricably intertwined” …           “Memory is a constant act of creation” (viii).

Marks considers herself to be fortunate.  She pretty much lost the ability to read or write, and her speech was profoundly affected.  But because her inner voice was also muted, she was unable to register how bad her speech sounded.  And she was blithely unaware of how devastating her situation would have appeared to her PhD student, pre-stroke self.

“With my internal monologue on mute, I was mainly spared from understanding my condition early on.  Unable to ask myself:  What is wrong with me?  I could not, and did not, list the many things that were.  I was no longer the narrator of my own life” (20).

While still in the hospital, she had picked up a book and realized that she couldn’t read any more.  There was a momentary disappointment, she says, but without the words to think about it, the disappointment quickly passed.  She also tells of the moment she first picked up a magazine.  The graphics were too visually stimulating, “shouting” at her, and she put it down quickly (6).

With one side of her brain damaged by the stroke, Marks experienced her environment in new ways.  The functioning side of her brain was much more vigilant and sensory oriented.  Without the distraction of language, it hyper-focused on her surroundings.  She felt an “interconnectedness” with the world around her (20).

Another new sense was of serenity, a pleasant, peaceful, almost meditative state that occupied her consciousness when left to her herself.  Lacking the constant chatter of an inner voice, she could think but without noise.  She labels that meditative state “the Quiet,” and she valued it intensely (18).

“It was a placid current, a presence more than an absence.  Everything I saw or touched or heard pulsed with a marvelous sense of order” (3).

But the agenda of those around her, who cared about her, was to pull her out of the Quiet and into language use.  In other words, speech therapy, family visits, conversations, and recovery-oriented activities worked against what the author then considered high quality of life.  Marks recalls that as soon as a visit or speech therapy would end,

“… I would gently be redelivered to the happy stillness of the pervasive Quiet”(11).

As Marks progressed in recovery and her language skills, both external and internal, improved, she struggled with the actual meaning of recovery.  If language, thought, memory and identity are so closely entwined, and so malleable, who exactly IS the person recovering and what identity are they recovering TO.  She expresses frustration with family and friends who seem fixated on her returning to her pre-stroke identity, when she feels like she is in the process of establishing a new identity.

In terms of care planning for someone like Marks, we have several issues to balance:

Are we attributing thought processes or feelings of loss that are not present?  I certainly feel that being aphasic would be frustrating for me, and it is easy for me to project that emotion onto someone with the condition.  But Marks and those around her noticed that she wasn’t that disturbed about it, especially at the beginning.

Also, how do you define quality of life for someone who can’t communicate well?  Marks valued the “Quiet.”  Most of those around her were unaware of what it was or that she enjoyed it so much.  What if our agenda of promoting social interaction and stimulation are actually depriving the person of what they feel provides quality of life at the time?  But what if quality of life at the time is at odds with the goals of the person who that individual was before the stroke?  And what if quality of life at a certain stage is at odds with the goals of the person who the stroke victim will become as recovery progresses – if it progresses?  To whom do we as caregivers owe our loyalty and person-centered care planning?  Obviously, we encourage, we flex, we try different approaches … we might even manipulate.  Part of our expertise in person-centered care is in figuring out what works.  But for whom?   In this case, the author during the worst symptoms vs. the author before the stroke vs. the woman writing this book –each was the same person, but each would have had different preferences/goals.

So, now you have some more fodder for second-guessing yourself as an activity care-planner.  You’re welcome.

© Donna Stuart, ADC       February 18, 2019

Marks, Lauren. A Stitch Of Time. New York: Simon & Schuster, 2017.