On January 11th PMD Alliance hosted a webinar on the topic of Caregiving Strategies for Parkinson’s Dementia.  The speaker, Angelo Domingo, Psy.D. spoke about the cognitive changes caregivers can expect in a person with Parkinson’s and shared tips for accomplishing daily tasks as smoothly as possible despite those changes.  Before answering a couple questions, he shared some self-care strategies for preventing caregiver burnout.

Throughout his talk doctor Domingo reinforced the idea that if you allow yourself to be frustrated and angry about something over which you have no control, you are truly a victim of circumstance.  However, if you accept the situation as it is, you have total control over how you respond to the challenges before you.  This is true for both those with Parkinson’s and caregivers.

The webinar can be viewed on the PMD Alliance YouTube channel. 

The Stanford Parkinson’s Community Outreach Program has more information about these topics, which doctor Domingo referred to in this talk:

• Caregiver Stress
• Cognition and PD
• Driving
• Hallucinations and Delusions

And now, on with my notes…

– Denise

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PMD Alliance

Caregiving Strategies for Parkinson’s Dementia

January 11, 2021

Speaker:  Angelo Domingo, Psy.D.

Living with Parkinson’s Dementia: A Family Issue

“My happiness grows in direct proportion [to] my acceptance and in inverse proportion to my expectations.  That’s the key for me.  If I can accept the truth of ‘This is what I’m facing – not what can I expect but what I am experiencing now’ – then I have all this freedom to do other things.”- Michael J. Fox Is Feelin’ Alright After 20+ Years with Parkinson’s, AARP, April/May 2013

In doctor Domingo’s experience in working with people who have Parkinson’s, awareness of what is happening to you can either cause depression over what you can no longer do or empower you to live in the moment and find workarounds so you can continue do the things you enjoy.  Nobody knows exactly what path your future will take so empower yourself to focus on today, what the struggle is right now, and how you can work around your limitations.

He came up with this talk on a run when he realized he was running, listing to music, dodging pedestrians and traffic, etc. largely on autopilot.  When someone has Parkinson’s each of those tasks requires tremendous mental and physical effort.  

How can Parkinson’s Change a Person?

• Everyone experiences Parkinson’s Disease in their own unique way, with their own unique symptom profile and pattern of progression.
• Parkinson’s Disease affects about 2% of individuals aged 65 and older.  Making it fairly common among older people.  Cognitive symptoms of the disease often involve:
  • Forgetfulness
  • Personality change (paranoia, anger, isolation, depression)
  • Cognitive slowing (shortens attention span and limits depth of attention / how much we can take in at one time)
  • Poor judgement and decisions, despite “knowing better” (more on this topic later in this talk)
  • Difficulty understanding spatial relations and form
  • Visual hallucinations
  • Muffled speech

If the brain is like a corporation where everybody has their role:

• In Alzheimer’s all the executives leave and all you’re left with is the support staff who have no decision-making ability.
  • With Alzheimer’s, judgement is impaired, cognitive skills are impaired, but they think they’re okay.  
• Parkinson’s is the opposite – the executives are all present, but the support staff has left.  
  • Doctor Domingo works for a large disability insurance provider.  There he has a support team that sends him claims to review with questions and summarizes for him what he needs to do and what to focus on.  
    • If he had to do all the leg work for each claim himself, it would be overwhelming and result in chaos.
  • In Parkinson’s, those support systems that manage the flow of information coming into the brain degrade over time.  So, the decision-making parts of the brain become overwhelmed.  This results in information not registering / going in one ear and out the other, because it is just too much to process.
    • Caregivers will say, “I can have a conversation with my spouse in which he repeats back to me what we discussed and agrees on a plan.  Then he goes off and does everything the same way he always does, as if our conversation never happened!”
    • This is because there’s no support staff in their brain to say, “Focus on this new plan now.”
    • This can be the most frustrating thing about caregiving for someone with Parkinson’s

Doctor Domingo has discussed cessation of driving with people who have Parkinson’s.  Often their difficulty is the ability to hold many aspects of driving in their head at the same time.  They may not realize their reaction times, etc. are insufficient.  Example: one person explained how he practices every week in an empty parking lot so he can continue to drive.  He neglected to realize that he could no longer raise his head to look out the windshield.  This is a good example of how those with PD have difficulty holding multiple facets of a situation or multiple bits of information in their mind at the same time. 

Parkinson’s Care:  Tips for Daily Tasks – based on Mayo Clinic Recommendations
1. Reduce Frustrations

• Take your time.  Expect things to take much longer than they used to.
  • Caregivers often say, “I don’t understand why it takes him so long to do things.”  
  • Remember, the person with PD not only has difficulty moving their muscles, but it takes mental energy to move – in addition to slower mental processing when thinking how to do a task
  • Example – When doctor Domingo shaves, he doesn’t think about it.  But someone with Parkinson’s has to think about how to position their hand on the razor, getting the angle to the skin correct, how much pressure to apply, etc.  If you had to think about every aspect of doing a task, it would take you a long time, too!
  • Example – Some years ago doctor Domingo was asked to tend bar for an event.  He was given a dress shirt to wear, but had tremendous difficulty buttoning the shirt.  He couldn’t figure out why he had to concentrate so hard on buttoning a shirt.  He mentioned this to the person who gave him the shirt and was told it is a woman’s shirt so buttons on the other side.  Women’s shirts are cheaper, so that’s all the bar service bought.
• Involve your loved one.  Allow them to do as much as possible with the least amount of assistance.
  • This does NOT mean leaving them to struggle with something unmanageable or that leads to frustration / anger
  • Structure things enough so they feel they are participating in their own life and their own care
    • Consider letting them dress and help when they get to the frustrating bits, like buttons
    • Consider buying clothing easier to get into (elastic waists, Velcro shoes, etc.)
• Limit choices.  The fewer options, the easier it is to decide (2 options is ideal, 3 options tops).
  • The more options you give someone with cognitive slowing, the more likely they are to become overwhelmed 
  • This is because there is no support staff to manage the volume of incoming information
    • If doctor Domingo had to find insurance files at work and sort through what needs to be done for each claim, it would involve a lot of frustration because he has support staff to do that for him. 
  • What would you like for dinner, X or Y?
  • At a restaurant with a large menu, ask what they are in the mood for (salad, sandwich, burger), then show them where the section is on the menu for the type of food they want.  
• Provide simple instructions.  Keep your sentences short.
  • Because there’s no support staff in that brain to keep track of a lot of details.  Information will be lost if you:
    • Use run-on sentences with a lot of, and, and, and…
    • Provide multi-step instructions
• Reduce distractions.  
  • Turn off TV, music, etc.
  • Get in front of them at eye level
  • Get their attention before you start speaking.
  • Slow your speed of speech without being condescending 
  • Allow them time to process what you’ve said and compose a reply
• Limit Overstimulation.  This can be the overall environment (too loud, too many people, too much action) or fast conversation in their presence.
  • Example – a couple went to a local carnival.  The husband had PD.  After a while he told his wife it is time to go home.  He found the environment to loud, the crowds too challenging / tiring to navigate.  He was very aware of his emotions and able to express when he’d had enough.
  • Not everyone is able to recognize when they are becoming overwhelmed and exhausted
    • They may just become agitated, irritable / cranky, paranoid, delusional.  These are signs of overstimulation.

2. Manage Expectations, Be Flexible & Predictable – can be the biggest frustration for people caring for someone with PD

• Often, those with PD can manifest repeated lapses in judgement and impulsive behavior while appearing otherwise logical and reasonable.  Hence, caregivers must be mindful of their own expectations and assumptions that their loved one “should know” what to do.
  • Remember the lack of support systems in the brains of those with PD.  Just because someone says they understand what’s being said to them and seem to agree, doesn’t mean they will follow through on what’s just been agreed upon.
  • People with Parkinson’s have a frontal disconnection – the front / reasoning part of our brain is disconnected from the rest of the brain.  That results in a person largely on autopilot when they shouldn’t be.  They do what they have always done in the ways they always did it.
    • Example – doctor Domingo had a conversation with a man who had advanced PD about why he should not get up without assistance.  The man told him all the reasons why he should not get up without assistance.  After distracting him for about a minute, doctor Domingo asked the man what he would do if he dropped his spoon on the floor when he was eating along.  The man replied automatically, “I would bend down and pick it up.”  
    • His reply AND his behavior to get up and do things for himself are because he is not thinking about it.  He is behaving on autopilot.  He never had to remember to use a walker or get help, and his mind is not thinking about the new strategies for doing things.
    • Just because you discussed this issue with him and he seemed to understand and agree, does NOT mean he will have any level of follow through.
  • So, you may need to create more of a structured, yet adaptive, routine to minimize frustrations.  You may also need to relax your standards a bit.  Crumbs on the floor, a shirt untucked, milk placed in the cupboard instead of the fridge…  Are these things worth an argument?  NO.  Just avoid the argument.

• Create a Safe Environment – Once you’ve rid yourself of the expectation that the person with PD will be safe or adaptive on their own, how do we structure the environment and routine to help them stay safe?
  • Prevent falls
    • Add glow sticks or streamers to their walker so they notice it when they want to get up
    • Leave the walker right in front of them so they cannot go anywhere without moving it
      • Without judgement say, “When you want to get up, this will be right here.”
  • Use locks.  
    • Install locks on cabinets that contain anything dangerous, particularly if your loved one is demonstrating increasingly impaired judgement.
    • People with PD can have visuospatial issues.  They may think they are picking up something different from what they have in hand that can be dangerous.
  • Check water heater temperature.  
    • Set to economical setting of 120 degrees.  
  • Stock emergency supplies for first aid in case there are minor injuries from falling.

• Focus on Individualized Care – limit judgement of both yourself as caregiver and your loved one with PD
  • Each person who has PD Dementia will experience its symptoms and progression differently.  Consequently, care giving techniques need to vary.  Make your loved one as much a part of his or her own care as possible.
    • Cut yourself and your loved one some slack
    • Don’t compare yourself and your situation to others.
      • Outwardly, another caregiving situation may seem calm and smooth sailing, but you don’t know what goes on behind closed doors.  
      • The person with parkinsonism symptoms in that household may have a different version of Parkinson’s from that which you are dealing with.  The constellation of symptoms and progression of disease will be different from yours.  Consequently, they may have fewer challenges and frustrations.
  • Patience and flexibility, along with good self-care and the support of friends and family, can help you deal with the challenges and frustrations.
    • Allow more time to accomplish tasks and for rest if the person with PD becomes fatigued
    • Hire help or organize respite volunteers
    • Use adaptive clothing, utensils, etc.
    • Pick your battles.  
    • Especially if your loved one has dementia,
      • Do not expect behavior to make sense
      • Do not expect to win an argument because they are not bound by logic

3. Adapting to communication challenges
Parkinson’s care gradually erodes communications skills.  It damages pathways in the brain, making it difficult to find the right words, formulate clear thoughts, and speak clearly.  

• If you are dining in a restaurant or large group seat someone beside them who is willing to converse with the person with PD one-on-one through the entire meal.
• You can communicate with your loved one more effectively by:
  • Speaking clearly and SIMPLY
    • Remember, too many details or language that is too fast is overwhelming.  They will not be able to follow what you are saying
    • Some people also have hearing deficits which also hinder understanding that is too fast or with too many details
  • Not interrupting
    • Someone with PD is unlikely to remember what they were telling you if you interrupt
  • Allowing your loved one the time he or she needs to respond
    • Give them 30 seconds, then check in and ask if you lost them somewhere.  They will either say:
      • No, I’m thinking
      • Yes, what did you say?
  • Avoiding distractions
    • Turn off TV, move away from others, etc.
  • Showing respect and interest
    • If you expect them to change and be less frustrating, it isn’t going to happen, and you will feel like a victim of circumstance
    • If you accept the task of coping with your frustration you can do something about your feelings of frustration
  • Avoiding arguments – unless their behavior is unsafe or grossly inappropriate socially
  • Staying calm and NOT taking it personally
    • People with dementia often accuse caregivers of these things, but it is the disease talking:
      • Cheating on them in the relationship
      • Stealing money from them
      • Imprisoning them
  • Being honest…within reason
    • Don’t share with them facts of reality unless they have the cognitive capacity to deal with it emotionally, otherwise you are causing them grief when they have no capacity to change the situation or cope with the strong emotions the truth may arise.
    • This is where lies of omission and kindness come into play

Preventing Caregiver Burnout:  Caring for Yourself!Caregiving is exhausting, physically, emotionally, and mentally because you must put your feelings in a box and ignore them for extended periods of time.  It can bring you to the point of having nothing left to give.

• Burnout is defined as “a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude – from positive and caring to negative and unconcerned.”
• In addition to the financial and physical stress associated with being a caregiver, there are several emotional factors that can easily lead to burnout.
• Caregivers may be so preoccupied with the care of their loved one(s) that they don’t attend to their own needs until they reach a point of exhaustion

How Can I Prevent Burnout?

• First and foremost, preventing burnout involves being committed to your own self care
• After establishing that your own health is important, the next step is recognizing the signs and symptoms of burnout.  They are not an indication that we have failed as a caregiver, but that we are not taking care of ourselves.  We need to be aware of our own limitations.  These signs and symptoms may include:
  • Depression and anxiety
  • Chronic irritability
  • Physical and mental fatigue
  • Animosity towards your loved one
  • A lack of empathy or caring for your loved one
  • Frequent, intense fantasies of escaping from the caregiver role
  • Angry outbursts towards your loved one
  • Verbal or sometimes physical abuse towards your loved one
  • Neglect of your loved one
• Feelings of guilt stemming from negativity or abuse / neglect of your loved one?
• Develop a plan of self-care, including:
  • Taking more time for your own self-care is a necessity, so you can continue to care for your loved one.
  • Examples of self-care include: socializing with friends, exercising and physical activity, alone time, engaging in hobbies, and going on small excursions.
  • Engaging the services of loved ones, friends, or professional caregivers to ease the burden on you
  • Consider respite care in an Assisted Living or Long-Term Care Facility to give yourself “a vacation.”
    • 30-day respite programs are common services of these types of care facilities
• Lastly, knowing when it is appropriate to place your love one in a facility (Assisted Living or Skilled Nursing) is crucial for minimizing burnout.
  • Placement of a loved one is a decision often fraught with a lot of conflicting emotions, such as guilt, grief, and sadness
  • Recognizing one’s own limitations as a caregiver and the signs / symptoms of burnout can make this decision easier
  • Recognizing the limitations of our loved one
    • Sometimes, when our loved one is acting out (paranoid, delusional, aggressive, or violent) it is because they are overwhelmed by the home environment
    • After they adjust to a routine with additional caregiving help or in a facility, their behavior settles
  • Loving someone and being totally responsible for someone are two totally different things.

Questions and Answers
Q. How can I get the neurologist to address Parkinson’s dementia?
A. If the dementia symptoms are pronounced (hallucinations, delusions, paranoia), get a geriatric psychiatrist to work in tandem with the neurologist.  Geriatric psychiatrists see a lot of this.  Often Parkinson’s disease is associated with Lewy Body Dementia, which is associated with hallucinations, delusions, etc.  If the dementia symptoms are less pronounced, consult with someone like doctor Domingo (a psychotherapist) to understand what to ask your neurologist.  They can guide you in how to approach your neurologist or a nurse in the neurology office.

Q. What medications are out there for Parkinson’s dementia?
A. For dementia there are medications that increase acetylcholine in the brain, like Aricept.  Namenda works via another mechanism.  These medications provide a cognitive boost.  You may need to increase the dose as disease progresses.  

There are also atypical antipsychotic medications for hallucinations and delusions, like Seroquel and Nuplazid.  These reduce hallucinations and don’t make Parkinson’s symptoms worse.  If your loved one’s hallucinations are not distressing, it is often not worth medicating because some medications cause drowsiness and medication interactions can make life more challenging for both the person with dementia and the caregiver.

How caregivers manage the stress of caring for someone with dementia who doesn’t make sense is the crux of self-care.  The moderator said she appreciates all the shared chat suggestions, like joining a caregiver support group.  Even though it doesn’t make problems go away, it helps to share your frustrations and get tips from others caring for the same disorder.