October 06, 2021
Regardless of how ‘good’ we may be at communicating with people with dementia and recognizing their non-verbal and behavioral communication, often the message behind a behavior remains a mystery, at least for a while.
Deciphering behavioral communication can be a process that takes a team to uncover and fit together a number of pieces of the overall puzzle. Any or all of these can be helpful – or essential – information to figure out the message:
- Knowing the individual’s life history and current daily routines
- Familiarity with the individual’s behavioral communication history (What did it mean last time they did this?)
- Observation of often subtle clues (Perhaps a key word or off-handed comment, a grimace or wince, a waning appetite, or an increase in trips to the toilet.)
Even with all of these boxes checked, it often boils down to a matter of trial and error – but that doesn’t mean haphazardly pulling guesses from out of nowhere. Instead, we get much better results when we use a systematic approach.
1. Sit down with a partner or team. Examine the pieces of the puzzle. Brainstorm.
2. Take an educated guess at what might be at the core of the issue.
3. Develop a plan to address this potential core issue.
4. Enact the plan. Continue to observe and track behaviors.
5. Revisit the topic with the team on a regularly scheduled basis.
6. Record findings. Revise the plan, and repeat as needed.
One of the first things we need to do is to start logging behaviors.
There are various behavior log forms available, and there’s not necessarily a single best. Everyone has different needs, so just use what works for you. At a minimum, take a blank notebook and start tracking the basics:
- What led up to it
- What you think may have contributed
Feel free to download ABC Dementia’s Behavior Log template to get started.
People with dementia often act differently than they used to. Although we can’t change this, it’s not necessarily a problem. However, it’s not always clear whether a particular behavior should be logged or not.
- Any and all episodes of distress by the person with dementia (fear, anger, anxiety, etc.)
- Behaviors which infringe on the rights of others
- Behaviors which threaten the safety of the person with dementia or others
- Drastic or sudden changes from their usual behavior
- New or disturbing hallucinations or delusions
- Repetitive questions, hoarding, moving items, wandering, or other behaviors that may irritate the caregiver – unless they distress the person with dementia or create a safety concern. (An exception to this may be in the case of a family caregiver who is near burnout, with limited coping ability.)
If possible, plan to meet with a partner or small team routinely to review the behaviors. Staff, hired employees, care partners, family members, therapists, social workers, or others can potentially fit the bill. Plan to meet regularly, perhaps weekly, depending on the frequency or urgency of the behaviors.
Ideally, one or more of the team members should be very familiar with the person with dementia, their daily routines, and history of behavioral communication. It’s also helpful if at least one member of the team has a strong understanding of behavioral communication in dementia.
It is possible to do this alone, without a team, if necessary. However, the benefits of incorporating multiple points of view – and even just bouncing ideas off a sounding board – make finding a partner more than worthwhile, if at all possible.
Once the team has been assembled, it’s time to sit down and take a look at all the information and puzzle pieces at our disposal. There are potentially thousands of clues available… the more we uncover, the easier it becomes to solve the puzzle and decipher the message.
Start by reading the logged behaviors, and any associated details, out loud.
- Make a mark after the last documented behavior (or start a new sheet) so it’s easy to know where to pick up again next time.
Look for patterns as we review the log.
As the team looks through the documentation and observations, we’re looking for patterns that might shed some light on the meaning beneath the behavior. Look at:
- Location or setting
- Day of the week
- Time of day
- What were they doing, or trying to do, at the time of the behavior?
- What had happened earlier in the day, or leading up to the behavior?
- Who was around?
It’s important to document each behavior at the time it occurs in order to capture these details!
We don’t have to document every detail on every behavior, but as we’re developing or testing theories it can sometimes help to zero in on certain specifics. For example, if we think a person’s blood sugar levels might be contributing to irritability we may want to record those readings with each behavior. If we suspect that pain is playing a part, we might want to complete a pain assessment, and log a pain level score along with each entry.
Additional information and clues can come in any number of packages. This is where the brainstorming really comes into play, and the big picture really comes together!
Pay attention to the unique history, routines, patterns, and needs of the individual. Discuss what you think might be going on. Encourage everyone to contribute whatever comes to mind. Depending on the size and constitution of the team, it may or may not be helpful to have a leader steer the conversation.
Throughout the discussion, we’re considering possible triggers or unmet needs that might be at the core of the behavior.
It can help to have a list of common triggers, unmet needs, and places to look for clues in case we get stuck. Here are some examples. [Download a print-friendly version here.]
- Was this a sudden change?
- Have they had similar behaviors in the past? What did it mean then, or how did it resolve?
- Have there been any changes to their daily routine lately?
- Any recent changes to their activity level or energy level?
- What’s the environment like? Noisy, busy, or chaotic? Comfortable? Any recent changes?
- Are they overstimulated?
- Any new people around?
- Has there been any recent change in their appetite, weight, or sleep patterns? (Look for sudden significant changes, as well as gradual trends over time.)
- Have any potential signs of pain been noted? (Grimacing, wincing, limping, rigidity, altered breathing, verbal negativity, etc) * Refer to the PAINAD tool for more.*
- Any problems urinating? Is their urine concentrated, indicating possible dehydration? Is it cloudy and odorous, indicating possible infection? New or increased incontinence?
- Are their vital signs within normal limits? Blood sugar?
- Any recent medication changes?
- Have they had any recent falls?
- Are they feeling hungry or thirsty?
- Have they shown any potential signs of depression? (Anger, anxiety, repetitive negative or hopeless thoughts, restlessness, tearfulness, frequent complaints about physical discomfort, sleeps too much or too little) * Refer to the Cornell Scale for Depression in Dementia for more.*
- Are they feeling out of control in their life?
- Have they been feeling frustrated, overwhelmed, unheard, or disbelieved lately? About what?
- Are they feeling rushed?
- Are they feeling stressed?
- Are they feeling disrespected?
- Are they feeling unsafe?
- Are they feeling unwell?
Intellectual / Vocational
- Do they regularly engage in meaningful, personally rewarding activities?
- Do they have opportunities to feel productive and useful?
- Are they understimulated?
- Do they enjoy meaningful social connections and relationships with others?
- Is the person experiencing any major changes or losses they may be grieving?
- Any signs of spiritual discomfort, such as fear of death, or difficulties with forgiveness?
We’ve uncovered as many pieces of the puzzle as we can. Now, it’s time to take an educated guess about what may be at the core of the behavior – and the meaning of its message.
Don’t discount the importance of listening to our intuition here!
Once we’ve come up with a theory regarding the behavior’s message, we can develop a plan that addresses our suspected root cause. If our plan misses the root cause at the core of the issue, the behavior (or other behaviors) will persist.
Let’s consider foot pain, for example. There are lots of potential ways to relieve discomfort from foot pain, such as refraining from walking, taking medication or purchasing new shoes. However, if the root cause of the pain is an ingrown toenail, the pain (and any behavioral communication) will continue to come back – or get worse – until the toenail is tended to.
Read more about finding the root cause at ABC Dementia’s Growing Proactive and Finding the Message in the Fall.
When developing a plan, be specific about exactly who will do what by when – especially if several people are involved. It’s just too easy for things to slip through the cracks while everyone thinks somebody else has it covered.
Once we’ve decided on the plan, we carry it out as we continue observing and tracking behaviors as usual.
It’s important to check back in with the team at the next scheduled meeting (or as necessary). Was every aspect of the plan carried out as discussed? Were unanticipated changes required in real time?
Review any new behaviors that have occurred since the last meeting. Pay special attention to any change in frequency, intensity, or nature of behaviors.
Update the plan as needed, again being specific about exactly what each person will be responsible for doing.
In the best-case scenario, our plan worked, the behaviors resolved, and the person living with dementia has been doing great! Although it can play out this way, it often doesn’t. Frequently, the plan needs to be tweaked, or discarded altogether in favor of a brand new one.
Perhaps the plan didn’t make any difference in the behaviors. Make note! This can be valuable information as we work to decipher the message. We now know that this particular trigger or unmet need was not likely the culprit – and sometimes ruling things out is the name of this game.
Once we do figure out something that seems to work, it's important to record our findings. It’s likely that later in their journey this individual may express a similar need in a similar way. If we already know this information, we’ll be better poised to help them more quickly next time.
Sharing our findings is also an important piece of the work in many cases. Sharing findings could mean a number of things, such as updating caregivers to new approaches, or communicating with the doctor if we suspect pain, depression, or illness is at the root of their discomfort.
ABC Dementia’s Growing Proactive: Read more valuable information about:
- Engaging frontline staff in behavior meetings
- Looking for patterns
- Finding the root cause
- Making data measurable
- Communicating effectively with the doctor to create real results
ABC Dementia’s Finding the Message in the Fall contains valuable information about finding the root cause, as well as deciphering behaviors, especially as they relate to falls.
ABC Dementia’s Behavior Log
ABC Dementia’s Step by Step Guide to Deciphering Behavioral Communication
ABC Dementia’s Brainstorming Behavioral Communication: Common Triggers, Needs,and Clues
PAINAD - Pain Assessment in Advanced Dementia Scale
NPI - The Neuropsychiatric Inventory Questionnaire
Cornell Scale for Depression in Dementia
The Cohen-Mansfield Agitation Inventory
Bristol Stool Chart