Words, Harmful or Helpful?
Our words are how we communicate, how we build or break down relationships. Let's consider our language and use of words, when we communicate with others, is our language positive or negative? Are we uplifting or depleting?
Sometimes words get used when we don't even understand their definition and if that word is a type of "labeling".
Let's consider 2 words. These words get tossed around sometimes as though they are interchangeable, but what do they really mean?
The words I am talking about are "Responsive Behavior versus Reactive Behavior".
I would like to share the definitions of each and have you decide, are they interchangeable?
"Responsive Behavior (RB) is a term originating from, and preferred by, persons with dementia that represents how their actions, words and gestures are a response, often intentional, to something important to them."
"Reactive Behavior- acting in response to a situation rather than creating or controlling it."
When we are talking about someone living with Dementia, does it matter how we use our words?
What kind of ideas do we put in our minds or others when we use our words?
Here is some PAC Language that you can use and share. Be positive with your language!
PAC Language
Key Phrases and Ways of Talking About Dementia and Care
Commonly Used Phrase or Word- Demented person
PAC Language-Person Living with Dementia (PLWD)
Reasoning- People who are living with dementia and are able to let others know have asked for this to be used – at an international level
Commonly Used Phrase or Word- Alzheimer’s patient
PAC Language-Person who has Alzheimer’s (if accurately diagnosed OR Person who has dementia (if not sure of type)
Reasoning- A person is a PERSON, not a patient, unless being treated and seen by a medical professional in a medical setting and even then that person is still a person first and a ‘patient’ second and has dementia/Alzheimer’s but should not be defined by that diagnosis
Commonly Used Phrase or Word- Dementia Sufferer or Victim
PAC Language-Doing the best he or she can while living life with dementia (Alzheimer’s , Lewy body dementia, Fronto-temporal dementia, Alcohol related dementia, Vascular dementia, etc.) Sometimes struggling and sometimes finding joy and pleasure.
Reasoning- People living with various forms of dementia may at times experience challenges and frustrations, emotionally, physically, intellectually, socially, etc. It is NOT our job or role to ‘label’ that person as suffering – only that person can say where he or she is at that moment. There will also be moments of joy and celebration with living with this condition. Being a victim implies you are not able to do anything about it. We are able to guide, assist, and support so that challenges are addressed and needs are met.
Commonly Used Phrase or Word-Hand-over-hand, or doing it for the person
PAC Language-Hand-Under-Hand TM
Reasoning- Hand-under-hand uses body-to-body communication. It uses the surfaces of the hand that are most frequently and historically used to interact with objects, people, the world in order to give the person the information about what is happening, what is expected, what is going to happen next. It also provides an opportunity for body to body feedback that is gentle and subtle, rather than having the person hit out or grab, or refuse.
Commonly Used Phrase or Word-Feeding Someone, Bathing her, Changing
“She’s my feeder..” “He’s my shower…”
PAC Language-We do tasks WITH people, not TO people.
Care supports the person’s living of their life “Helping someone eat” “Helping someone bathe”
Reasoning- Supporting someone in THEIR doing of the activity/task – it may range from set-up, to prompts, to guidance, to physical help, to maximal assistance
Commonly Used Phrase or Word-Caregiver, Carer, Care taker
PAC Language-Care Partner
Reasoning- In our model we are in the care world to SUPPORT and help the person, not to GIVE them something they may not want nor even know they ‘need’. When we work in partnership there is a mutual benefit to be achieved. For all we do, permission to do it is granted and tasks are shared, and thanks are given. The role of the care partner will change and change and change, as the condition changes, but it must always be a partnership, since I am choosing to be here to help you live YOUR life.
Commonly Used Phrase or Word-Burden
PAC Language-Choose to Support
Reasoning- If at any time the care partner begins to feel or sense that caring is becoming a BURDEN, then a PAUSE and TIME OUT is essential for continued healthy relationships and physical and mental health. There may be times when a third party might be able to guide the care partner into recognizing ‘burn-out’, but if the partner is able be self-aware that is critical.
Commonly Used Phrase or Word- Resistive
PAC Language-Trying to Communicate
Reasoning- The PLWD is trying to hit the ‘stop’ or pause button during an activity or task; typically indicates that the PLWD is not on the same page as the care partner. Something we thought we communicated and got their OK, but it's not clicking or working for them. It is very rare that PUSHING thru active resistance results in a good outcome. Typically, pausing and recalculating and restarting or apologizing then re-cueing is much more helpful
Commonly Used Phrase or Word-Refused
PAC Language-My agenda and your agenda are not matching
Reasoning-Time to PAUSE and TIME OUT until what is happening is explored and figured out.
Commonly Used Phrase or Word- Aggressive or Combative
PAC Language-Driven by the Survival Brain
Reasoning-This is simply a physical demonstration of my sense of immediate danger and threat.
Commonly Used Phrase or Word-Agitated
PAC Language- Distressed
Reasoning-Behavioral symptoms are just that SYMPTOMS of distress. If we see, hear, feel them we can then INVESTIGATE them, become curious about what triggered them, and make adjustments to try to reduce them thru modifications to the environment, the task demands, the care partner and others presence or absence and behavior, AND how time and task are fitting into the routine and patterns for that person. Change starts with US deciding to CHANGE what we can control, not by trying to get the person to ‘STOP BEHAVING’ – the behavior lets us know if we are ‘figuring it out and getting it’. Changes in intensity, frequency, and duration can be critical for determining next steps and moving toward a more positive situation and outcome
Commonly Used Phrase or Word-“It Came Out of Nowhere”
PAC Language-I didn’t pick up on cues – I missed the signals that the survival brain took over
Reasoning-Frequently, as care providers, we can get so into getting the task accomplished, that we miss how the other person is doing, what they are getting, what they are thinking, feeling, wanting. It is so important that we PAUSE and try to reconsider what happened from that person’s perspective, how it might have happened for them. When we can do that, we increase the odds that we can figure out ‘something’ to change to reduce the risk of it happening again.
Commonly Used Phrase or Word-“I am trying to help you”
PAC Language-“I am sorry, I led with my agenda, and forgot to figure your agenda out”
Reasoning-There is a need to share with the PLWD that you noticed you were getting task and agenda focused and that it was a mistake (look at your “FIVE I’m Sorries” for details
Commonly Used Phrase or Word-“You need to…(complete a task)”“I need you to…”
PAC Language-“It’s about time to (task). Would you rather do this or that?” (provide two acceptable options) (using VVT cueing)
Reasoning- First, the language being used by the care partner indicates a level of distress and frustration. “Need ’” comes from the primitive/survival brain. I means our thinking/cortical brain is not engaged.
Reframing the request, shares SIMPLE information (USE VVT CUES) about time, place, and situation, and provides OPTIONS (this or that), OPPORTUNITY (“Could we give it a TRY?”), and a sense of CONTROL (“Could you HELP ME a minute?”)
I am here to SUPPORT you , not to force or coerce you
“What do you want to do/wear/eat/drink/etc.?”
PAC Language-“Would you like this (show/state item) or that (show /state item)?
Reasoning-Try to find two comprehensive options, if preferences are not known. Include preferred option, if preferences are known.
Simplify requests, DON’T ask for what the PLWD struggles to do. At the same time to NOT ask preferences and encourage choices eliminates practicing that skill/ability
Commonly Used Phrase or Word-Doing something to someone (examples: “Get her dressed”, “Take him to the toilet”, “Change her”, “Take her to activities”)
PAC Language-Helping or supporting someone in doing something
“Here you go” by gesturing, showing or pointing
“Here’s your (offer object)” orienting the item for the person’s use and offering it to their preferred side in visual range
Reasoning-These are ways of moving from a task centered approach to care TO a PERSON CENTERED APPROACH
Commonly Used Phrase or Word-“Constantly following me around”“Won’t let me out of his sight”
PAC Language-Shadowing
Reasoning-The PLWD is somewhat aware of the changes in their abilities and recognizes the importance of having guidance and assistance available from a trusted person in order to know where to be, what to do, who they are with, and what happens next. The PLWD is using the care partner as both a ‘shield’ when others are around that make them anxious or afraid AND as a source of information and guidance
The PLWD may also be picking up on the care partners cues that s/he is tired, frustrated, angry, etc. and will want to be even closer, may apologize more, become desperate or accusatory feeling like the partner doesn’t want to be with them or like them. Trios are critical for these situations – so time away is possible to recharge care-partner batteries
