*Resident names and any identifying details have been changed for privacy.
October 2, 2020
[Excerpt from Hilltop Heights]
When a man loses his sight, his hearing will often become dramatically more sensitive to compensate. Similarly, when a person's cognitive abilities are impaired, he will often rely much more heavily on non verbal communication. He will pick up very well on the energy in a room, and whether it is calm, tense, or chaotic, his mood will generally follow.
When there are twelve or fifteen cognitively-impaired people in a room together, the energy can quickly become out of control. This was very well illustrated one afternoon when Honey was assigned to sit with Mervin.
Honey and Mervin were both injured at the time. Honey had hurt her back when a resident she was assisting suddenly sat without warning. Mervin had cracked some ribs in a recent fall. He couldn't move, or even breathe deeply, without significant pain. Of course, he couldn't remember his injury, and he was very confused, and frightened, by the intense pain.
It seemed innocuous enough. Honey would sit with Mervin, remind him to remain seated, and reassure him as needed. She decided a simple project cutting animal pictures from magazines might keep Mervin occupied, and hopefully distracted from his pain and anxiety. It was a good idea that should have worked, but there are just some days where nothing will. This was one of those days.
Honey, Mervin, Kelly, and about ten other residents were in the living room watching the classic movie The African Queen. When Kelly was called away, Honey was left alone with the residents. Both Susanna and Benji were having issues with aggressiveness and couldn't be left unattended. She was also left with the phone, which was ringing off the hook.
Each time the phone rang the energy level seemed to rise a bit more. She couldn't keep Mervin's attention. Honey could hear the doorbell ringing, but couldn't leave the room to answer the door. She mentally apologized to whoever was waiting outside. She prayed another aide would appear but everyone was busy elsewhere. Honey fought to remain calm as the chaotic energy and noise level grew.
Benji had been reciting nearly every line along with the movie, and his voice began to crescendo with the energy in the room. Susanna, Benji's arch-enemy, woke up from her cat nap and immediately began snapping at him to shut up.
Mervin was now trying to crawl out of his reclining chair, moaning in pain with each movement. Honey tried to convince him to settle down as the phone continued to ring. Where is everyone?? she thought desperately.
Pearl, in the meantime, had wandered into the living room to stand directly in front of the television.
"Get out of the way!" someone yelled.
"Hey, Stupid, why don't you move!" someone else chimed in.
Pearl responded with a loud, long, wet sounding fart. Behind her, on the screen no one could see, Kate Hepburn and Humphrey Bogart imitated jungle animal noises and laughed. Pearl added something like, "Eeeeeh---eeeeh--eeeeh-hehehe!!!" which only seemed to add to the fire.
"If you don't get out of here," Susanna's voice was unmistakable, "I'll get up and get rid of you myself!"
Honey felt like screaming. She knew Susanna wasn't bluffing.
"Oh, no! Here come the falls!!" Benji yelled with a grin. "Hold on!! We're going down!"
He recited the panicked lines along with the movie as the boat goes over the waterfall and into the rapids below.
By now Honey had given up on even answering the phone. She was pleading with Mervin to sit back down. Mervin seemed oblivious to her. "My wife," he kept repeating, with increasing anxiety, "I've got to save my wife!" As he stood up, the animal pictures they had been working on scattered.
"SHUT UP YOU NINNY!!" Susanna roared fiercely at Benji. He got up and in her face to shout something unintelligible, but unmistakable nonetheless. She shook her fist at him.
"Benji, COME HERE!" Honey pleaded from across the room, still trying to steady Mervin.
Benji leaned over and picked up a rather gory picture of a pride of lions devouring an elephant. (The side intended for use depicted a lioness licking her cute little cub.) He flung the picture of the lions feeding at Susanna but it landed instead on Mary Ann’s lap. He ignored the error and yelled, “See! This is what is going to happen to you if you don't use your seat belt!”
Mary Ann stared in shock at the picture that had just inexplicably appeared in her lap. “Oh no wonder you're crazy!" she chided herself. "You are just plain stupid crazy. Well, no, I am not! Yes. Yes. Yes, I am.”
Honey felt utterly helpless in the midst of the madness. She wished she had a lion taming whip and a chair. Get down! Get back in your chairs! Finally, she spotted Kelly down the hall.
"Kelly! Can you please help Pearl?"
As Kelly led Pearl out of the room, we could see brown rivulets streaming down her pant leg. Almost all the noise stopped at once as the residents looked on in horror.
“Oh the poor thing!” declared Marilyn sympathetically.
“That’s too bad…” said someone else.
Susanna glared at Benji as he wandered back to his seat. She pointed an accusing finger at him. "See what you made her do!"
It doesn't matter how proactive you are, some days – or weeks – spent with someone with dementia will end up feeling chaotic and unmanageable. Spend it with several people with dementia and all the more.
However, if it feels like this more often than not, it may be worth taking a step back and looking for ways to become more proactive.
Behaviors in dementia don’t come from out of nowhere. Each one has a reason. Essentially, when people can’t communicate verbally they communicate behaviorally. Perhaps:
– Something in the environment (including what we are saying to them) is triggering an emotional reaction
– Their sensory processing ability is overloaded by too much noise, or other stimulation
– They are misinterpreting something around them
– They have a physical, emotional, mental or social need that must be met (such as hunger, fear, boredom or loneliness)
– Something is wrong medically (pain, infection, electrolyte imbalance or other condition)
Most of these conditions can be fixed, or prevented if we can figure out what the trigger, overload or need is.
It’s fairly common knowledge – at least among those who understand how to respond to behaviors in dementia – that a proactive approach is preferable. The earlier we can respond to a behavior, the better. If we can anticipate the problem or need and “respond” to it before it even occurs (“prespond” if you will?)… that’s ideal.
When we can avoid the problem altogether, or stop it in its earliest stages, we avoid the symptoms and complications that arise as it grows.
A proactive approach is generally preferable whether we are talking about behavioral challenges, infection control, fall reduction or most other issues.
If we proactively wash our hands and take measures to keep a wound clean the wound typically heals without infection or issue.
If we are a little lax with our infection control, we might see some early signs of infection. The wound may become sore or inflamed. If we respond at this point, we can usually get it under control within days with just a few interventions.
We may need to consult the doctor and take antibiotics. It may involve a trip to the doctor’s office and the pharmacy. We’ll need to remember to take the medications as ordered. And hopefully, we’ll avoid any complications from the medication, like upset stomach or yeast infection!
Responding to the infection early takes more time and energy than preventing it in the first place – but much less than if we let it continue untreated.
What if we are busy with Many Important Things and we fail to notice the early signs of infection? Typically the infection will continue to get worse until it cannot escape notice. Soreness and inflamation will increase. The infection can spread to the surrounding skin, or even to the blood and entire body, leading to sepsis.
Sepsis is a life-threatening medical emergency. If we end up with sepsis we will likely be spending days (or more) in the hospital, and weeks recovering (if we’re lucky!)
Many medications, doctors and medical bills later, we will have lost so much time, energy and attention to this infection that we likely will have fallen behind on many more Important Things.
Of course it makes sense that preventing problems results in fewer… well, problems. But, how do we actually do it?
Running from one crisis to another – fires popping up as fast as we can put them out… it's easy to become overwhelmed and exhausted. It can be hard to get ahead of the game.
Crises take time. They take energy. They take attention.
When do we find the time to take a step back, view the big picture, look for patterns and plan for the future?
That is THE question… The answer may not be obvious, but if we can manage to figure it out, we’ll find the effort is well worthwhile in terms of saved energy, fewer problems, and better outcomes all around.
The process will be ongoing, and may look something like this.
-> Define the problem
-> Define the goal or what improvement looks like
-> Track the data and make it measurable
-> Look for patterns
-> Find the root cause
-> Communicate concerns
-> Try out ideas and initiate interventions
-> Continue tracking the data routinely
Or, in the words of quality improvement guru and revolutionary thinker Edward Deming, author of Out of the Crisis:
-> Plan - Do - Study - Act
One of the most impactful things that our memory care center did to move towards a more peaceful, proactive place was to enhance our behavior meetings.
Previously, management staff would read through reported behaviors and come up with ideas for interventions. Perhaps we would update a care plan or write a memo, often with little impact.
A lot of behaviors tended to go unreported, and the reports we did receive were sometimes confusing, incomplete or contradictory.
We could see in the documentation itself that many staff didn’t know how to effectively respond to particular residents’ behaviors.
Honestly, it could be a challenge to follow up adequately with staff members on all the little things they could be doing differently in their behavior approaches amid the Many Important Things we had going on. Plus, despite our considerable efforts to the contrary, they would often feel that they had done something wrong. It’s hard to talk to someone quickly and effectively about what they could have done differently in a situation to reach a different outcome.
We decided to involve the frontline staff in the behavior meetings directly.
It turned out that just inviting them to come wasn’t enough.
We started to consider behavior meetings as ongoing staff training. We figured out how to structure them so they met applicable training regulation requirements.
The management team met weekly to review behaviors. Frontline staff were required to attend one meeting per month. This typically gave us a small enough group to encourage individual participation in the conversation, and large enough to represent various viewpoints from across the shifts and disciplines.
Depending on who was in attendance we might focus on particular problem times of the day. Early evening and mealtimes were inherently challenging times in our world, so we spent a lot of time discussing how to make those periods run smoother.
We took notes and were specific when assigning who was responsible for which follow up action by when. Frontline staff members took primary responsibility for many of the follow up actions (with an appropriate amount of back up by management based on the situation).
We would generally start the meeting by reviewing the old follow up items, to ensure they had been completed. If there was any really burning issue we might start with that, but otherwise we would read through the behavior documentation as a group.
We would encourage group discussion about what was behind each behavior or pattern of behaviors. Which needs were being expressed? What could we try differently next time?
Aside from using real-life, relevant situations as teaching topics, we prioritized listening to the staff during this time. They had a lot of good input, information and insight.
We also tried to really hear their concerns and find out what was hard for them and why. I think they appreciated that their voices were truly valued.
There is a pervasive general assumption that certain people with dementia are “just like that”, especially during certain activities like personal care. That behaviors don’t need to be reported unless they are severe or out of the ordinary.
Some of the staff who were more experienced in the “old ways” always retained a bit of residual resistance to reporting behaviors because:
– It didn’t hurt me
– They didn’t mean it
– It wasn’t their fault
– I don’t want them to “get in trouble”
– That’s “just him” (or her)
We went out of our way to change this.
It wasn’t enough to say it once. We had to repeat it, and live it, until it came from the staff themselves – and then we still had to continue repeating and living it.
It didn’t matter that it didn’t hurt when the resident hit you during a brief change. What mattered was that they were communicating something and this is how we could hear them, advocate for them and figure out how to avoid that distress.
Once we could identify the patterns, and communicate as a team about when the behaviors were actually occurring, and when they weren't, we were able to find interventions that worked. Maybe she didn’t swing if you sang to her while changing her brief, or when you gave her the favorite teddy bear to hold, or when her pain was treated prophylactically.
The culture started to change.
With the frontline staff’s direct involvement in the behavior meetings, we saw some big changes.
Staff were able to fill in details or clarify points about confusing documentation. They also invariably contributed information that they had not documented.
Staff tended to be much more diligent in interventions if they came up with it on their own, or participated in coming up with it. Perhaps they better understood the background and reasoning, or maybe because they "owned” it they had some emotional stake in helping it to succeed.
Who knows better about what is needed than the people doing the work every day?
The staff who work most closely with the residents know what is needed – even if they don’t always realize they know.
Sometimes they just didn't realize that they were allowed to try something different. They just needed encouragement, or the go-ahead.
I suppose it's worth mentioning that we had also committed to finding and maintaining high-quality staff. Because we were limited in what we could offer financially, we did all we could on other fronts to convey our appreciation and create a rewarding and valuable work situation for them.
We made an effort to know what was important to each individual in their job. Did they appreciate responsibility, acknowledgement, opportunities for advancement, autonomy, or a particular schedule? What created frustration or stress for them?
Frustration and stress more often than not boiled down to communication issues and different workstyles amongst team members. Setting up the schedule so that people were working primarily with the same few mini-teams seemed to alleviate much of that frustration. We made a point to support their inter- and intra-team communication and staff really seemed to respond. Satisfaction, pride, and morale improved while turnover, absenteeism and burnout went down.
While it's one thing to notice that someone has “been cranky lately” and have a theory about why, it is entirely another to turn those observations or intuitive feelings into the kind of data that can be measured.
Esther has 17 documented episodes of “negative vocalizations” (crankiness, complaints and grumbling) in the last month. 14 of these 17 occured in the afternoon between 3:15 and 5:00.
This is really where the team discussion makes a big difference. What other information might we have if we put all of our heads together?
For example, one or more of the following tidbits might also come up in discussion.
- Several of the residents are having increased behaviors during that time period.
- Esther hasn’t been eating well at lunch this month.
- Esther has been sleeping poorly at night.
- Esther's crankiness increased during a past episode of knee pain. With treatment that crankiness had improved. She now takes a routine pain med every morning.
Discussion might lead to some theories as to what is happening, such as:
- The residents are being affected by an increase in noise or commotion with shift change
- Esther is hungry
- Esther is tired
- Esther is experiencing pain, perhaps after the morning pain med has worn off.
We can decide which theories seem most likely and choose one or more to explore.
- Change shift change procedure to reduce disruption.
- Investigate further as to why Esther isn’t eating at lunch (Is she eating at other meals? Is there evidence of pain, depression or swallowing difficulty? What else has changed in that time frame?)
Investigate further as to why Esther is sleeping poorly. Is this a change? How could we help her meet her needs for sleep?
If we suspect Esther is having pain, but is unable to recognize or articulate it, we can use a PAINAD form to translate the behaviors and physical symptoms into a pain score.
There are a number of forms that healthcare professionals use to translate behavior or other symptoms into measurable data that can be tracked or quantified.
The Cornell Scale for Depression in Dementia
The PAINAD Tool - Pain Assessment IN Advanced Dementia
The NPI - The Neuropsychiatric Inventory Questionnaire for Dementia-Related Behaviors
The Cohen-Mansfield Agitation Inventory
These types of tools can be extremely effective for communicating concerns with other healthcare providers. They are also valuable for measuring whether particular behaviors are increasing, decreasing or holding steady over time.
As we gather and review the data, we look for patterns. For example, is a behavior happening:
- at a certain time each day?
- on particular days of the week?
- prior to or after particular activities?
- when particular people are around?
What is going on in the environment before or during the behavior?
For instance, we tended to have an abnormally high number of behaviors every Wednesday afternoon.
We realized that this was right after the residents would return from their weekly bus outing. Many were tired, anxious to get to the bathroom, disoriented or confused about where they were. Others were reacting to the generally loud and chaotic energy in the atmosphere.
Once we identified the pattern and came up with our theory, we enacted a plan.
We ensured that all staff was on board and ready to walk each resident all the way to their room, if needed, to reset their orientation.
We also prepared a special snack and activity ahead of time to help direct their energy.
It made a big difference in the atmosphere as well as the behaviors.
Moving to a place of proactivity requires identifying the root cause of the problems.
The root cause of a problem is incredibly important to identify. Essentially, the root cause is the fundamental problem at the deepest level.
Like the weed that persists despite many pullings, unless the root is removed, the symptoms at the surface will continue to return.
And like a root beneath the earth, it can sometimes only be located by looking for the outward signs of the weed, digging around and following it downward.
Consider the fictional example from above of Esther's crankiness – or "14/17 episodes of negative vocalization", if you prefer.
We can imagine how it might play out.
If the root cause of her crankiness is pain, adjusting the shift change procedure is unlikely to impact it at all.
She has not been eating or sleeping well lately – which could very well be a result of the pain itself.
But, say we miss the mark on identifying the pain. Esther says she's not hurting, so we dismiss that possibility. We end up reporting to the doctor that Esther has not been sleeping or eating well. A few days later we receive orders for a nutritional supplement and a sleep aid.
The supplement may actually proactivity prevent weight loss, if Esther takes it. If she doesn't, she may end up losing a lot of weight, leading to a whole host of further problems.
The sleep aid does nothing to help Esther's pain, so she doesn't feel any better. Her crankiness is subdued because she's pretty groggy from the medication. She seems confused and somewhat unhappy in general.
Esther's risk of falling will be very high on the sleep medication. She does end up falling several times but never gets hurt. Staff ask her if she hurts, but she always says no.
She is generally cranky or moody most of the time now, but the staff isn't concerned. Esther is just like that.
Mood changes are common with dementia, after all.
Alternatively – we do remember her past history of similar behavior with pain. Esther denies pain when asked, but we decide to evaluate her symptoms using the PAINAD tool. At 4 out of 10 on the pain scale, it indicates possible moderate pain.
We report to the doctor that Ester is exhibiting behavioral symptoms in the afternoon, and that in the past similar symptoms had indicated knee pain. We provide a copy of the PAINAD so it is clear which symptoms we are seeing.
A few days later, we receive an order for pain medication in the afternoon. We ensure it's okay to give it around 230, since her difficult time seems to start at 300.
Esther's crankiness significantly reduces. She's alert, more relaxed and in a much better mood. She's also sleeping better.
It doesn't seem to affect her appetite at lunch, but she's eating quite well at dinner.
The team investigates further as to why she isn't eating at lunch and the ongoing process goes on.
The behavior meetings gave us lots of facts. Not only did those facts help us see the patterns in behaviors, very often we were able to report what we were seeing to the doctor or nurse in a meaningful way.
Telling the doctor "She's been cranky lately" doesn't offer much to work with. Not only that, doctors don’t necessarily understand the intricacies of behavioral communication in dementia. Unless they have special training or experience in dementia, many doctors won’t recognize “cranky lately” as anything other than “a common symptom of dementia”.
However, when we can report specific facts we can change the game. We learn to speak the language the doctors understand, and “translate” our residents’ behavior into measurable data they can work with.
The tools described above, such as the PAINAD, NPI, and Cornell Scale are incredibly helpful to this end.
By recognizing and advocating for our residents' medical needs, they are more likely to be treated appropriately, and less likely to be expressed behaviourally.
For a long time we were completely antipsychotic-free. On the rare occasion an antipsychotic medication was used it was in response to an actual need: such as a persistent, frightening hallucination. In those cases, we monitored closely for side effects. With their debilitating symptoms under control, the residents were alert, higher functioning and enjoying a higher quality of life than they had been previously.
We will always experience the unexpected in dementia care (and in life!) Things come up, take longer than expected, and don’t go the way they “should”. There will always be emergencies, medical events and behavioral communications that need to be addressed immediately.
Allow for time to respond to events that can’t be predicted or prevented.
Understand that this will always be a work in progress.
Watch out for unintentional sabotage (be it from ourselves or others). People who thrive off drama, or who only feel useful when they are busy can unwittingly cause turmoil for the sake of feeding their ego or maladapted needs.
This article focuses primarily on one way to systematically develop a proactive approach to behaviors in a long-term memory care setting, however the basic tenants can be applied to most situations.
Regardless of the setting or situation, moving from crisis mode into a proactive perspective will require attention, data and determination.
Involve frontline staff from a variety of viewpoints. Represent different shifts, days and weekends. Involve frontline caregiving and nursing for sure, but don’t overlook activities, housekeeping, maintenance or nutritional services.
If you're working one on one with a person with dementia: define the problem, define the goal and track the data.
What exactly is the problem? What would improvement look like? What exactly is happening each time the problem occurs? When? What happens leading up to it? Write down the details and review it all regularly.
Whenever possible, involve supportive services such as physical therapy, a mental health counselor, doctor, hospice nurse, social worker or spiritual leader.
Communicate the problem, the goals and your thoughts to appropriate parties. Listen to their ideas and be willing to try new approaches. Avoid dismissing suggestions as “already been tried” without careful consideration.
Could the scene in the opening excerpt have been prevented with proactive measures? Perhaps. It’s hard to tell from only one glimpse. We need to gather data, look for patterns and find the root causes of the issues.
- What went into Mervin’s fall? Could his pain have been better managed so he wasn’t constantly distressed by it?
- Why were both Susanna and Benji having “issues with aggressiveness”? Why were they both in the same room if they were “arch-enemies”?
- Why was an injured employee alone in a room full of residents (at least three of whom appeared to need special attention), a telephone, and a doorbell?
- Could there have been a different movie (or activity, like music) that would have contributed different energy to the room?
Honey certainly was in no place to take a look at these issues from where she was in the midst of the chaos, trying her hardest to prevent catastrophes all around her.
The best time to ask these questions is before they ever occur. Anticipate the needs and problems, and completely avoid them.
Otherwise, make a point to really ask these questions after the fact. No judgment; no defense. What really did go into this outcome? What could we change so that next time works better for everyone?
Creating a culture, or pattern, of proactivity takes time, attention and effort on an ongoing basis. But, I promise, it’s worth the effort.
From a place of proactivity, there will be far fewer crises and we enjoy better outcomes in general. The time and energy we save can be used to enhance, enrich and improve the lives of our residents – and ourselves – immeasurably.
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Why healthcare leadership should embrace quality improvement
Dementia Care: Proactive Management Helps Problem Behaviors
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How to Deal With Someone Who's Always Looking for a Crisis
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