Dementia Re-Examined

Exercise – “Speed Dating” Stand up and form two lines, facing each other, so that each person has a partner to talk to Depending on your space available, room set-up and number of people, this exercise can be conducted in a variety of ways: “speed dating” format – series of paired conversations with people switching partners each time In small groups of 4-5 people per group at tables In pairs or triads that remain consistent for several scenarios

What would you do if…? Make sense of the situation – what’s going on here? How do you feel? What do you do? See handout and tip sheet for sample scenarios and tips on conducting the exercise – how to set-up and fame the scenarios, questions and points to discuss in de-briefing the experience.

How Do We Understand Behavior? What are “behaviors”? Medical symptoms? Predictable human responses to the perceived situation? Attempts to communicate an unmet need? Our answer to above question shapes our response Identifying and prescribing pharmacologic or non-pharmacologic “treatment”? Focus on stopping the behavior? Or identifying the need? Seeking empathy and understanding? As just identified through the exercise, many of the “behaviors” that we struggle to understand and respond to in persons with dementia are simply normal and predictable human responses to the situation the person perceives around him or her and can be triggered by: Fear Self-protective instincts Confusion about what is happening Frustration with an inability to do something A need the person is trying to draw our attention to Once we recognize and acknowledge this fundamental understanding of “behavior” our focus can shift from trying to determine how best to stop it from continuing or how to “treat” it to how we can best figure out and respond to the underlying message that the person is trying to communicate.

Biomedical vs. Experiential Model of Dementia Biomedical Model Experiential Model View of behavior Confused, purposeless, driven by disease & neurochemistry Attempts to cope & problem-solve, communicate needs Response to behavior Problem to be managed; medication, restraint Care environment inadequate; conform environment to person Behavioral goals “Normalize” behavior; meet needs of staff & families Satisfy unmet needs; focus on individual perspective Non-pharmacologic approaches Focus on discrete interventions Focus on transforming the care environment Overall result High use of meds, continued suffering, decreased well-being Rare use of meds, attention to spiritual needs, improved well-being A. Power, Dementia Beyond Drugs (2010) Our traditional approach to persons with dementia has long been grounded in a “biomedical model” that we use to try to understand, explain and respond to their behavior. This model focuses on trying to adapt the person to their environment and drives us to respond to challenging behavior by trying to find the solution that will help to stop it, to “normalize” the person with dementia. By contrast, an “experiential model” of dementia is grounded in trying to get inside the world of the person with dementia and seeking to understand how they are perceiving and experiencing their environment, their interactions, and the whole of their experience. This model calls on us, as caregivers, to respond to behaviors we find challenging by identifying what about the environment can be modified to adapt to the person’s needs, rather than the other way around. At the heart of this model is trying to understand the underlying message that the person’s actions are trying to communicate, and to respond to that message with the appropriate action to address whatever is being expressed.

“Behaviors” vs. “Behavioral Communication” Agitation (Self-Referred) Clapping Yelling/Screaming Slapping thighs Message: Something is wrong with me! Do something! Response: Curiosity Identify the need Precipitating factor(s) Aggression (Other-Referred) Hitting/Kicking Pinching Biting Threatening/Swearing Message: Stop! Leave me alone! At its core = FEAR Response: De-escalate – back off, come back later Identify fear triggers Foster sense of safety & security Another way to frame the idea of “behavior” in dementia is to think of a persons actions as “behavioral communication.” The person who now has trouble expressing him or herself through words in a way that we can understand is using his or her best available means to get a message across. A few common behavioral challenges, potential meanings and responses are: Agitation: The message - something is wrong, I need something, please help me. The response – detective work – what is the need and how can I meet it? What is this person trying to let me know about what he or she needs from me right now? Aggression: The message – stop! I’m afraid, I feel threatened. The response – back off and let the situation calm down; seek to understand what may have caused the person to react out of fear and what you can do to re-establish a sense of safety and security for the person.

Maslow’s Hierarchy of Needs In considering a person’s possible unmet needs, be sure to think about all levels of human need. Often, we do a very good job of identifying and addressing or ruling out the most basic levels of need – the physical – but if we stop there, we are missing many other parts of the puzzle. Does the person: Feel safe and secure, or is something causing them to be fearful? Experience meaningful interactions with other people that are important to them? Do they have friends and family? Are they lonely and needing companionship? Have positive feelings about him or herself? Or are they frustrated by challenges they may be experiencing? Does their environment allow them to be successful and to feel good about anything they can do for themselves? Do they have opportunities to contribute to others in a meaningful way? Have avenues to express themselves creatively? Do they have activities to engage in that are personally meaningful and rewarding to them?

A Person-Centered Approach A continuous, relationship-based process… Listening Paying attention Trying things Seeing how they work Changing as needed Responding successfully to persons with dementia and their behavioral communications requires us to take a highly individualized, person-centered approach. It is only by knowing the person and interacting with them on a regular basis that we will begin to identify what works for them and what doesn’t; to understand how they communicate best; to try to anticipate their needs. Responding to behavior as communication is often a process of trial and error – we are often making our best guesses about what we think the person may be trying to tell us and our best guesses about what a successful response to that message might be. Some of what we try will work, some will not. The key is to keep trying, to pay attention to what works, and to keep track of that for ourselves and others so that over time we can do more of what works and less of what does not.