Non-motor symptoms of Parkinson’s disease & how they impact relationships – Webinar notes

Non-motor symptoms of Parkinson’s disease & how they impact relationships – Webinar notes

In early March 2020, Parkinson Canada offered a webinar on mood and cognition in Parkinson’s disease (PD), featuring speaker Dr. Adriana Shnall. She provided an overview of mood and cognition symptoms, including depression, anxiety, cognitive impairment, and psychosis; then she discussed strategies for improving communication and working around these issues. We at Stanford Parkinson’s Community Outreach listened to the webinar and are sharing our notes.  

To watch the webinar recording on YouTube, follow this link.

If you have questions about the webinar, you can contact Parkinson Canada by phone at (800) 565-3000 or via email at education@parkinson.ca.

One resource mentioned in the webinar is the Parkinson Foundation handbook, Mood, which is available for free download as a PDF here.

For additional resources on issues with mood and cognition in PD  –  including downloadable guides, links to online resources, and webinars and podcasts – see these pages on the Stanford Parkinson’s Community Outreach website:

Now… on to our notes from the webinar.

– Lauren

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Mood & Cognition: Non-motor symptoms of Parkinson’s disease & how it impacts relationships – Webinar notes

Presented by Parkinson Canada

Originally aired on March 3, 2020

Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

Parkinson’s Disease (PD) used to be considered only a neurological disease, characterized by its motor symptoms. However, it is now increasingly understood to be a neuropsychiatric disorder – that is, consisting of both neurological and psychological symptoms. Mental health changes are just as important as motor changes.

Depression or anxiety (sometimes both together) are the most common mood changes that occur in PD, affecting up to 50 percent of people with this disease. Mood changes in PD are not as well understood as motor symptoms, and yet they often have a greater impact on quality of life and ability to function than motor issues like tremor or slowness.

Depression is not just a reaction to the diagnosis of PD – it is now understood to be a symptom of PD itself, caused by a chemical imbalance in the brain. Like the other symptoms of PD, it is important to try to address depression, not “tough it out.” Medications are available to help with depression, which is often under-treated in PD.

Symptoms of depression can include the following:

  • Feelings of guilt
  • Thoughts of death or suicide
  • Decreased interest or pleasure
  • Poor attention and concentration
  • Sleep problems
  • Feeling slowed down or restless inside
  • Self-blame or worthlessness

Anxiety occurs in some form in up to 40 percent of people with PD, and may present as the following different symptoms:

  • Generalized anxiety: A feeling of nervousness and worry; a person may feel out of control, and often has physical symptoms as well.
  • Anxiety attacks: A sudden sense of severe physical and emotional distress, often feeling unable to breathe or as though having a heart attack. It often appears that a medical emergency is happening. Typically lasts less than an hour, but sometimes longer.
  • Obsessive-compulsive disorder: Uncontrolled thoughts or behaviors that repeat over and over and are troublesome to the person, such as excessive handwashing, intrusive thoughts, or intense stress about objects being disorganized or asymmetrical.
  • Social avoidance: A fear of embarrassment that drives the individual to avoid social situations. In the case of PD, embarrassment may be about motor symptoms or speech difficulties.

Other emotional changes often occur in PD as well, affecting more than half of people over the course of their disease. These can include:

  1. Disinhibition (loss of impulse control), such as gambling or sexual preoccupation. This can be a side effect of some medications and should be mentioned to the physician!
  2. Increased emotions, such as becoming more emotional and tearful, sometimes without an apparent reason and without feeling sad. Treatment isn’t always needed, but antidepressants or mood stabilizers can sometimes be helpful.
  3. Decreased emotions can be a sign of apathy, which is a decrease in motivation or drive to do anything, without necessarily feeling sad or depressed. People with apathy may be unaware and feel fine, but may need a structured schedule and frequent encouragement to remain active.

Cognitive impairment

Over half of people with PD experience some form of cognitive impairment, which typically progresses in parallel with motor symptoms over time. We think cognitive impairment may occur in PD due to changes in brain structure as well as chemical imbalances, but scientists do not fully understand the mechanisms. Cognition deficits are also worse if someone is anxious, depressed, or sleep deprived.

In the early stages of the disease, this can present as being easily distracted, or losing a train of thought. In the middle stages, decision-making, problem-solving, memory, and word-finding can become difficult. In the later stages, more serious cognitive issues may arise, such as confusion, visual hallucinations, delusions, and agitation. 

We can’t improve cognition; there are no medications that address this. However, if anxiety, depression, or sleep deprivation are present, addressing those problems may help cognition somewhat.

Cognitive impairment is not the same as dementia; they both fall along a continuum.

Dementia is difficulty with memory and thinking that interfere with daily activities, and often requires a high level of care. Someone who occasionally forgets words or loses their train of thought, but is still able to manage their finances and drive a car safely, has some degree of cognitive impairment, but does not have dementia.

The majority of PD patients will experience some degree of cognitive impairment, not dementia. 

Psychosis

Psychosis is a state of being where an individual loses contact with reality, often leading to behavioral or emotional problems. It can affect up to 40 percent of people with PD at some point during the disease. The good news: it is sometimes a side effect of PD medications, in which case, the state of psychosis is reversible once the medication is stopped.

One of the most challenging complications of PD, it is important to try to address it, as it can become a greater problem than the motor symptoms of PD. It is also the most common cause of individuals needing to be placed at a higher level of care, such as a skilled nursing facility.

Causes of psychosis include:

  1. Side effects of PD medications: This is the most common cause of psychosis in those with PD. Medications such as Sinemet and dopamine agonist medications increase dopamine levels in the brain. Higher dopamine levels cause psychosis. If you notice the symptoms of psychosis, discuss it with your partner’s doctor!
  2. Dementia: Psychosis can result from changes that occur in the brain, regardless of medications. This occurs most commonly in those with Parkinson’s disease dementia.
  3. Delirium: A reversible change in mental function that results from a medical condition or metabolic imbalance, such as a urinary tract infection. Delirium typically develops over hours or days and resolves once the underlying medical issue has been treated.

It is important to remember that there can be overlap between these states of being; a person with dementia could also develop delirium, for instance, during a hospitalization or due to the flu.

The most common symptom of psychosis is hallucinations, typically visual (seeing things). Auditory (hearing things) hallucinations aren’t common but do happen for some people. Smelling or tasting things that are not there can also occur.

If hallucinations are not bothersome or upsetting to the person, it is best not to contradict or confront them about the hallucinations. For instance, if someone is hallucinating a calming view of trees outside the window, or thinks their deceased mother is hanging out in the room with them, these may be benign or pleasant experiences that do not need to be challenged.

Delusions are fixed ideas or thoughts that are usually illogical and irrational in nature. The individual may believe these thoughts immovably, even if they are not based in reality. Delusions occur less frequently in PD compared to visual hallucinations; they affect roughly 8 percent of PD patients, but can still be quite troublesome because they are so difficult to treat.

Examples of delusions:

  • Jealousy: false accusations
  • Persecutory: belief that you are being attacked or conspired against
  • Somatic: belief that your body is functioning in an abnormal way; an unusual obsession with your body’s physical function

It is critical to understand that these beliefs seem completely real to the person who is experiencing delusions.

How to deal with psychotic symptoms?

Talk to your loved one in a calm, non-threatening way about what they are experiencing. This can help ease their anxiety while allowing you to assess what symptoms they are experiencing. It can be difficult to stay calm and patient, but expressing your anger, frustration, or fear may escalate your loved one’s psychosis symptoms.

What to do if they become agitated or aggressive?

  1. Give them space and don’t approach them directly – don’t make them feel crowded
  2. Speak in a calm, even tone of voice
  3. Reassure them that they are safe and everything is fine
  4. Keep your hands visible and minimize your movements, to avoid startling them
  5. Ask open-ended questions (i.e. not yes/no questions) about their feelings and why they are upset
  6. Listen to what they say and make them feel heard

Environmental changes can also help:

  • Visual hallucinations: Ensure adequate lighting at night to reduce shadows
  • Delusions and confusion: Secure any dangerous objects in a safe location, and ensure the furniture is arranged for ease of navigation, to prevent falls.
  • Agitation or aggression: Try to foster a calm, peaceful environment without distractions or startling noises. Turn off TV and music.

Avoid contradicting the individual by saying, “That isn’t real.” But you also don’t have to reinforce the psychotic symptoms by agreeing that you see things that aren’t there. Try general phrases such as “I understand the trees seem real to you, but I can’t see them. I wonder if they might be a hallucination.”

Educate others who are often around your loved one about psychosis and mental health issues that can occur in PD. Allow others to help and don’t hesitate to ask for assistance, whether from family or friends, or community health entities.

Safety is a priority – yours and your loved one’s. If a situation gets out of control and seems unsafe to you, leave the room and get help from a family member, friend, or neighbor. Calling 911 is also an option, in more extreme situations.

Explore what resources are available to you, whether you need additional help in the home or are considering placement in a facility, either short-term or long-term. Psychosis can sometimes get worse, making it impossible to care safely for the individual at home. Speaking with a social worker about options can be a good place to start.

Communication in PD  

There are two main types of communication challenges in PD: challenges communicating with the person who has PD, and challenges communicating between the caregiver and others, to make one’s needs known.

What causes difficulties in communicating with someone who has PD?

  • Quieter voice: It can be harder to hear the person
  • Masked face: It can be harder to read their facial expression
  • Mood and cognitive issues: It can be harder for them to engage and express themselves

Strategies for better communication:

  1. One-on-one conversations or smaller groups are best.
  2. Reduce or eliminate distractions such as TV or music.
  3. Sit close, make eye contact, and speak at eye level.
  4. Encourage the person to take a deep breath when they start to speak, to help with speech volume. 
  5. Give the person time to respond – it can take longer for a person with PD to express themselves.
  6. Don’t make assumptions. 
  7. Remain calm; smile.
  8. Avoid using sarcasm, which can be misinterpreted.
  9. Ask one question at a time, to avoid overloading.
  10. Ask close-ended (yes or no) questions, which can be easier to answer than open-ended questions.
  11. Give hints if the person is having word-finding difficulties.
  12. Try to speak in short, simple phrases.

Involve the person with PD in decision making! The caregiver doesn’t always know better than the person themselves, and it is important that the person with PD feels heard and valued.

Many caregivers have a hard time asking for help. When someone offers help, it can be useful to assign a specific task, such as picking up dry cleaning or helping shop for groceries. Lots of people are happy to help but aren’t sure how.

Family meetings can be a useful tool to help family members who live far away to remain involved in care. A regular, scheduled, or informal meeting with family members present can provide additional support and input for the caregiver.

Communication styles matter

When someone communicates passively, they are trying to avoid conflict and avoid telling others how they are feeling. In the long run, passive communication doesn’t get your needs met. Others may feel they can push you around, or may be oblivious to a need for help.

When someone communicates aggressively, this can force your needs and desires onto others and push them away. It can cause people to become defensive and unwilling to work with you.

When someone communicates assertively, they express their own needs and preferences while respecting and acknowledging the needs and preferences of others. Assertive communication permits an open dialogue about the issue in question.

How to do this?

  • Respect your own feelings, needs, and desires and stand up for them – without shaming or humiliating the other person.
  • Use “I” statements rather than “you” statements. For instance, “I need a break” rather than “You never help out!”
  • Avoid “should” statements, such as, “You should keep your promise.” Instead, say, “It’s important to me that you keep your promise.”

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Question & Answer Session

Q: At what point does a delusion become a medical emergency or something warranting police intervention?

A: Any type of new delusion is very concerning and warrants an immediate call to the physician. It could be caused by medications, or a sign of another underlying medical condition. So it is very important to try to address as soon as possible.

Q: My mom has late-stage PD. I struggled with addiction and mental health issues for a long time, but am in a more stable place over the past year. My aunts are the two people who primarily care of my mother, and they don’t seem to want to involve others much. How can I broach the subject of becoming more involved in helping with my mother’s care?

A: Have an open discussion with them. Let them know how you are feeling, stick to “I” statements, and ask if there is a way they can all work together to care for her. Avoid blame or accusations, and focus on the positive: I’m here to help, I want to help.

If the conversations don’t go well, or there has been tension in the past, involving a counselor or social worker may be able to

Q: Any tips on how to relieve anxiety?

A: The only answer I can give is, it depends! It depends what the anxiety is about and the type of anxiety. Is it generalized anxiety? Is it about going out in public? Medications wearing off? Without more detail, it is hard to say.

Q: Dealing with apathy is a great source of frustration for caregivers. At what point does encouragement on the part of the caregiver turn into nagging?

A: It can be a hard distinction. It is important to push a bit, since changes in the brain make it difficult for the person to take initiative anymore. Pick your battles. If going to see the grandchildren today is really important, but the person doesn’t feel motivated, push for that. If it’s something less important, maybe let it slide sometimes. Giving alternatives so that the person can make a choice is sometimes helpful.

Q: Will the delusions and/or dementia occur in the later stages of PD, or at any time in the disease?

A: Dementia might never occur, though half of people with PD will experience some degree of cognitive changes that may not significantly impair their ability to function. Cognitive and mood changes typically occur later in the disease.

Q: I am someone with PD who doesn’t have a caregiver.  At this early stage, it’s not a problem. But am I kidding myself that I can face this disease alone?

A: Many, many people are in the same boat, and you are not alone in being without a caregiver. Some people have a lot of family and yet experience zero support from others. At some point, you will need others, but help can look different depending on how the disease progresses. What is really important is that you have a strong medical support team and participate in educational sessions, support groups, whatever is available to you.

Q: Would having a pet help with cognitive issues?

A: It depends – is the person someone who loves pets? If the pet becomes a source of stress because the person has difficulty caring for the pet, that can be a real problem. There is a company that is making robotic cats and dogs that are quite interactive. For the right person, a robotic pet could be beneficial. For others, a living pet would be better. For those who would have difficulty caring for the animal, it could be a wonderful source of stimulation and company.