On February 10th and 11th Dementia Alliance of North Carolina hosted the first Dr. Daniel Kaufer Memorial Caregiver Conference.  The theme of the conference was Behaviors: Awareness, Attitude (Day 1), and Action (Day 2).  I attended three sessions on Day 1.  This session is relevant for those dealing with Parkinson’s Disease and dementia.

These notes are on the second session, “Responsive Dementia Care: Fewer Behaviors, Fewer Drugs” with Helen Whitworth. Her focus was on Lewy body dementia. As dementia progresses, complex thinking errors occur, things become black and white, and people only live in the present. Decision making can become poor, and impulsivity can be a problem. Reasoning skills can regress and managing emotions can become more difficult. With dementia, the logic meter is stuck and the person’s perception becomes their truth. When a carer or family member tries to remind a person with dementia of reality, tension will arise. Due to this, a person with dementia may feel defensiveness, righteousness or abandonment, and a loss of abilities and control which can be experienced as a loss or theft of an item. They may want to go home. The best way to care for someone with dementia is to have the right attitude. Having the carer choose an attitude that is accepting, empathetic, positive and patient makes it easier to support the person with dementia and decrease their need to act out. The attitude then guides the actions. 

To view the webinar, please visit the Dementia Alliance of NC YouTube channel.

The Stanford Parkinson’s Community Outreach Project has more information about cognitive changes in PD here.

Please see below for notes on responsive dementia care.

Regards, 

– Joëlle Kuehn

---

“Responsive Dementia Care: Fewer Behaviors, Fewer Drugs”

Speaker: Helen Whitworth, MS, BSN

Webinar Host: Dementia Alliance of North Carolina 

Webinar Date: February 10, 2021 

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

Dementia is like living in a foreign land.  The person with dementia feels stuck there and can’t leave, but others can join by understanding how to best support them, and choosing to be aware of the changes and differences that dementia brings. 

Choosing awareness: knowing all you can about your loved one and the disease

• Who to be aware of:  Loved one and their whole team
• What to be aware of:  The disease, symptoms, drugs
• Why be aware:  The reasons the behavior happens
• How:  Your attitudes and actions

Early Lewy body dementia symptoms tend to be behavior-related:

• Hallucinations
• Thinking errors – show up before memory loss.  Might be misdiagnosed as psychiatric symptoms instead of dementia
• Drug sensitivities to antipsychotics and other medications
• Empathy deficit 

Note: Parkinson’s is a lewy body disorder that can advance into one kind of lewy body dementia.

Early Hallucinations:

• Seeing something that’s not really there
• Usually benign but can bother the caregiver more than they do the patient
• Seeing children or animals is common
• Vivid, well-formed

Thinking errors:

• Brain can’t do complex thinking
• Poor decision making
• Impulsivity – ex – buy a lot of things regardless of need or cost.  It can impact the carer financially if the bank account is overdrawn, so it can become a large problem
• Sequential tasks – organizing tasks becomes difficult 

Basic thinking skills:

• Complex thinking is something we learn as we grow, and we start out with very basic thinking 
• Live in the present – here and now
• Haven’t learned to separate themselves from others, so everything is “me, me, me”
• Things are black and white – no maybe, only something is or isn’t

Reasoning skills:

• As we grow we learn to reason
• Are able to make choices and organize and plan
• Understand concepts like money, distance, time
• Can see another person’s side of an issue
• Manage emotions
• Stop seeing black and white, and start to see the levels in between

Over time, dementia takes away the ability to do complex thinking and reasoning

• Here and now
• yes/no, is or isn’t, all or nothing
• Me, me, me
• As complex thinking and reasoning disappears, we’re left with the basic thinking skills we had as small children 
• Hallucinations start, and can cause conflict if a carer tries to remind the person of reality, and the person with dementia has a different perception of reality
• Can lose empathy – start to only see my view, my needs, my feelings
• When reasoning fades, person becomes more sensitive to feelings (person’s and carer’s) but can’t tell them apart

Emotions:

• Everyone has positive, negative and residual emotions
• Residual emotions:
  • Emotions remember from a previous experience
  • Dementia causes cognitive memory of those experiences to fade away, but feelings stay and sometimes grow stronger
  • That’s why it’s important to visit someone even if they don’t recognize the visitor anymore
• Positive emotions
  • Healing, soothing, calming, enjoyable
  • Especially important for people with dementia
  • Powerful because it makes a person more gentle and less pushy
• Negative emotions
  • Strong and demand action now
  • First ones person experiences and blocks communication
  • Can be obsessive about addressing them
  • Triggers the flight or fight 

With dementia, the logic meter is stuck and the person’s perception becomes their truth. When a carer or family member tries to remind a person with dementia of reality, tension will arise. Due to this, a person with dementia may feel defensiveness, righteousness or abandonment, and a loss of abilities and control which can be experienced as a loss or theft of an item. They may want to go home. 

Causes of behavior:

• Mood disorders: unresponsiveness, apathy, sadness, depression
  • Especially common with Lewy body dementia (LBD) because LBD targets dopamine
  • Makes it difficult to be positive, and amplify negative feelings
• Pain and discomfort
  • Can be body related due to physical triggers such as arthritis or infection, it uses resources that the body needs to function and can result in dementia symptoms and hallucinations or delusions
  • Can also be environmentally related and can be triggered by senses
  • Behavior can be the bodies way to communicate there is a problem
• Hallucinations
  • Brain damage
  • With LBD: can be visual, audio, touch
  • Early in the disease a person can decipher that it is simply a symptom of the disease but with cognitive involvement they believe it totally
• Delusions
  • Believing something false, or having a different reality that is the person with dementia’s only reality
  • Thinking errors – keep them from considering anything except the first information that they receive 
  • Can be triggered by real events, hallucinations, or dreams
  • Can show up as accusations, paranoia, misidentification, grandiosity
    • Accusation: 
      • Ex. fear of abandonment, accusations of cheating
    • Paranoia:
      • Unfounded feeling of persecution
      • Feel a sense of loss/pain that can be delusional or real
      • It either is or isn’t 
    • Misidentification
      • Capgras syndrome: seeing an imposter – my wife isn’t actually my wife it is someone pretending to be my wife
        • Brain misfire
        • Basic thinking – first info only, can’t evaluate
        • Visual symptom
          • Using a different sense such as audio can be a way to avoid capgras
          • But the audio/other sense needs to happen before the visual for it to work
    • “I want to go home” 
      • Even if already home
      • Emotional trigger
        • Wanting what it used to be, and wanting control
      • Talking about it and reminiscing (not explaining) helps
      • Time (take a nap and try again) and a change of scenery (go on a drive and give a verbal cue “We’re home!”) helps
    • Grandiosity
      • Bragging: unreal personal experiences
        • Usually benign, “all about me”
        • The trigger is an internal wish (“wish I was” becomes “I am”)
      • Best way to deal with it is to listen and go along
  • Thinking errors make it even more difficult to cope.  

Attitude: 

Having the carer choose an attitude that is accepting, empathetic, positive and patient makes it easier to support the person with dementia and decrease their need to act out. The attitude guides the actions. 

• Acceptance: accept my truth
  • Acceptance is not a belief, it is showing respect and validating them as a person
  • decreases negative feelings which decreases behaviors 
  • “Carer’s can be right or be happy”
• Empathetic
  • Share the world view
  • Carer can make an effort to see the situation in the person’s point of view, and notice how they would feel if they were in that situation
  • Empathize with the situation and their feelings, because the person with dementia may not be able to do that
  • Respond with what you think the person needs to hear
• Positive emotions
  • Person’s ability to have positive emotions is weakened by mood disorders and pushy negative emotions 
  • If the carer has positive expressions such as agreement, smiles, nods, many compliments, gentle touch, humor or fun, the carer’s feelings can become their feelings
  • Will accept all compliments at face value
• Patience
  • World is going faster than the brain can keep up
  • Go slow, pause, repeat, relax and stay calm
  • Make sure body language reflects that as well

Question and Answer: 

Question: My father is paranoid and thinks my husband and I are stealing from him. If we go along with it he gets even more upset. How would you deal with paranoia?

Answer: Going along with it is always the first answer but I understand it wouldn’t work in this case. Sometimes medication might be the answer and if that doesn’t work then (if it has LBD), dementia drugs might help. But if he does not have LBD, the dementia drugs might make it worse. 

Question: What can we do if someone won’t take medications?

Answer: A lot of people like to put it in apple sauce or something else that hides it. A lot of medications can come in liquid form which can be easier to give in a hidden form. Patches are a wonderful option too (put it on their back so they can’t reach it).

Question: What do you do if someone wanders (leaves the house when they shouldn’t)?

Answer: Creating “black holes” can help, which is putting black mats before the door, so it looks like a hole and makes it scarier for the person to go over it. Nursing homes do that in front of elevators.