“Understanding Challenging Situations: Putting Together Pieces of a Puzzle” – lecture notes

Teepa’s family has a history of caregiving and she has a curiosity about brains.  We don’t pay much attention to our brains as long as it works right.

About 50% of the time the person with dementia doesn’t thing there’s anything wrong with them because of the area of the brain that’s damaged.

– The frontal lobe handles sensory intake and processing.  It controls cognitive skills, emotional expression, problem solving, memory, language, judgement and sexual behavior.

– The primitive brain controls our primal instincts (survival, dominance, mating).

– The left amygdala is a threat perceiver,

– The right amygdala is your pleasure seeker

When a person with dementia goes overboard seeking what they like, we perceive it as inappropriate behavior

When a person with dementia doesn’t get what they like or they become uncomfortable (need to pee, thirsty, hungry) but are told they cannot satisfy that want when they want it, they may quit using their language center (right side of the brain) and begin using the left side of the brain (where all swear words are stored) and become verbally abusive.  If a verbal response is unsuccessful in satisfying their want, the only response left is just fight or flight so they may become physical.  They may hide (from you) and seek (assistance or a way to get rid of you).

An example of our most common approach to a person with dementia who smells badly, for example, is to say, “You smell bad.  Let me help you.”  A person with dementia has lessened sensory input so they don’t notice and don’t want you in their face so they resist (left amigdala threat perceiver).  You may be approaching them for a shower but they have had a bad experience with someone else trying to get into their pants (for sex?) so they feel threatened.

When you impose your help upon them and you get into a struggle over their resistance, your right amygdala is driving your own behavior (wanting to help).  If you stop forcing your agenda upon them they have nothing to put up resistance to.  If you continue to press your agenda to shower right now you could create another negative emotional memory about someone getting into their pants and an even stronger resistance against letting anyone remove their clothing and get them into a shower, causing a permanent bathing issue in your home.

Historically, shaking hands shows you are unarmed.  Shaking dominant hands (usually right hand to right hand)is holding each other’s center of skill. While you are shaking hands with someone they cannot reach for a weapon.  The webbed area of the thumb also produces oxytocin, the friendship hormone.  Pump that area of the hand you are shaking a few times to release it.  Oxytocin makes the person you’re shaking hands with like you better.  Left handed fighters are very prized because they can effectively stab the person they are shaking right hands with.  People tend to squeeze when they shake hands.  Those with dementia find it pleasurable to squeeze so they will squeeze harder because it is pleasurable (right amygdala).  This can be painful for caregivers.  Instead, use a ’soul shake’ where they are holding your palm.  It doesn’t hurt you as much, you can apply pressure to their palm (which they like), and you still have your fingers free.  You can make eye contact and use your fingers to help them with their buttons, glasses, etc.  This is called hand under hand assistance.  This nonverbal tool to communicate with them how you want to help them   Be sure to hold hands with their dominant side because you’re going to do the task WITH them, not TO them and there will be less resistance to begin with and no resistance once they learn that this is how you help them.

From the perspective of the person with dementia, “Don’t rob me of what I can still do, help me do what I still can do.” Eventually, the entire brain will be affected by the disease and I won’t be able to do anything of myself.  The muscles will all turn on in late stages of the disease and the wrists will drop, fingers will close, shoulders will pull toward the front, and they will sit backward, their head may be back or forward and the legs will come up to the chest and (maybe) to the inside.  All this flexion is also happening in the ribcage, causing discomfort.  In this situation caregivers will try to clean the person with dementia by unwinding the body to get to armpits, crotch, etc. and the person can still kick, hit and spit to defend themselves.  The person with dementia is physically hurt by this pulling on their limbs and feels threatened but they cannot speak.  When they defend themselves physically (kick, hit, spit) we tell them to stop fighting us.  Instead, put deep pressure on their shoulder and begin to rub in a circle beginning at their shoulder blade and rub down the arm.  Press the arm forward and across the chest to get your hand under the armpit to clean it.  Prop that arm on a pillow to allow the armpit to air dry.  Cover with a blanket so they don’t get chilled.  Most nursing instruction begins on dummies and does not include an understanding of the dementia experience of tricks, like this, to care compassionately.  Now that you know this you have a new agenda (to teach the nursing staff caring for your family member) and the caregiving staff will resist you forcing your new knowledge upon them and they will resist.  Before they will listen to you they need to have an interest in your information.

When you want to draw attention to something hold hands with them in the ’soul shake,’ pump their palm to release oxytocin and use your other hand to gesture toward what you want them to look at.  You can also use this to get them to stand by gesturing and leading them with the hand hold.  Reinforce their cooperation with enthusiasm and genuine thanks, rather than speaking to them like they are a dog or a three-year-old.  Treating them like they are a dog or child makes them want to get away from you and be uncooperative.  Earn their trust by treating them in a gentle, cooperative way rather than forcing your schedule or doing everything for them.  It makes them so much less anxious when you do tasks with them as much as possible.  These nonverbal methods work better than words because their reasoning is messed up.

If you forget and they begin to resist and become agitated, stop immediately and apologize face-to-face.  Speak from the heart.  You don’t even need to use words because in late stages words are hard for them to process.  You can, actually, apologize with just your facial expressions.

When someone with dementia is distressed they will breathe heavily, their voice will rise into the upper register and they may begin to stutter/stammer and not be able to express themselves fully.

As caregivers we accuse those with dementia that something is wrong with them, but that person is unable to recognize it.  In fact, a person with dementia is losing skills and we need to develop our own skills to help them.

What Causes Distress or Resistance?

There is a mis-match between what we expect versus what happens.  We’re holding on so tightly to what we had, we don’t realize its already gone and we can’t be open to recognizing what we still have.  Let go of what you can’t have.  Figure out what skills the person with dementia still has and help them continue doing those things.  Appreciate the special bond with have had with them over the years (shared humor, memories, etc.).

*** People need to have something they like every day.  If caregivers are not getting something they like every day they are enduring this disease.  Our right amygdala is not being satisfied and we live in a constant state of anxiety and/or depression.  Caregivers engage in behavior that is satisfying (carbs, sugar, caffeine, nicotine) to help us cope.  Combined with not taking the time to exercise, our health suffers.  Caregivers need talk support and a break from the caregiving trenches so that we can still find the person we knew and once loved and to look after our health.

Extroverts tend to touch what they see in a socially acceptable manner, but dementia keeps the brain from restraining itself by social boundaries.  People with dementia become uninhibited.  Caregivers may stop taking the person with dementia out and stop visitors from coming over in an attempt to keep people from seeing this embarrassing behavior.  Sometimes, people with dementia will sneak out or sneak around so they can do things to satisfy their brain’s urges because they know you will stop them from satisfying those urges.  That can lead to putting a person with dementia into a home where “there are people who know how to care for them.”  Thing is, in most places the staff is not trained well.  You know how to care for them better.

We can learn to compensate for these behaviors to meet the likes, wants and needs of our family member.  Remember, no matter where they live they will engage their fight or flight response if those needs are not met.

Pieces of the challenging situations puzzle:

1. I am who I was.  Now I’m different.  Accept me for who I am now.  Stop trying to make me how I was.  Let go of what you can’t have.

2. We are who we’ve always been until we choose to be different.  Caregivers have choice.  Don’t be the primary caregiver if it is not for you.  Be the care manager, instead. Find others to do the hands-on work.

3. If I don’t move with you I will move against you.  That is the struggle between the caregiver’s and the care receiver’s amygdalae.

4. I’ve got brain change.  It was not of my choice.  I may have more than one pathology damaging many parts of my brain.

5. It only takes one person pushing the button for a person with dementia to be triggered.

Some individuals in your family may have to find another role in the caregiving situation away from the person with dementia.

6. The environment in which both of us exists affects behavior.  Remove stressors in the environment (noise, mirrors, shadows, chill, family members who cannot adapt their behavior to accommodate the person with dementia, etc.).  Create a safe area to dance, garden, walk, soak up some sun, etc.

7. How will I fill my time?  If caregivers are not directing, a person with dementia will occupy themselves in socially unacceptable or dangerous ways.

4 F’s of a beneficial environment:

Friendly

Familiar

Functional

Forgiving – both people and an environment can be unforgiving.  Remove those stressors.  Create a safe area for activity.

Understand they are not making a mess on purpose.  They are not recognizing objects for their intended use, but instead are enjoying them as a sensory experience.  They may be finger painting with ice cream or poop.  They no longer have accurate sensory processing so poop smell doesn’t mean anything to them.  They are even likely to taste the poop.

Arranging their environment for safety is tricky because it has to do with their sensory perception.  They use their dominant side to step with and in doing that they are more stable on their feet.  In all your talking and directing without noticing what they are doing and how, you may trip them by not allowing them to use their dominant side. You need to support how they’re doing something.  They are more likely to get hurt or be uncooperative when you are trying to get them to do something your way in your time or at your speed.

Some last minute thoughts:

– They are likely to step over things that aren’t there.

– They are likely to step around something black on the floor.  They perceive it as a hole?

– If you don’t want someone wandering, paint interior doors the same color as the walls.  It makes them harder to find.

– They are more likely to cooperate with dressing or bathing in a warm environment.

– Glass and styrofoam cups don’t work for people with dementia because they can’t tell how tightly they are holding it and are likely to break them with too much pressure.