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How to Bring Light to the Darker Side of Parkinson’s: A Primer on Hallucinations and Delusions and How to Manage Them

how-to-bring-light-to-the-darker-side-of-parkinsons-a-primer-on-hallucinations-and-delusions-and-how-to-manage-them

How to Bring Light to the Darker Side of Parkinson’s: A Primer on Hallucinations and Delusions and How to Manage Them

When most people think of Parkinson’s, they think of the motor symptoms that often come with it: tremor, rigidity, slowness, shuffling. However, they are often unaware that Parkinson’s comes with a wide variety of non-motor symptoms that can affect thinking, mood and behavior as well.

Parkinson’s disease psychosis is a non-motor symptom of Parkinson’s that causes people to experience hallucinations and/or delusions. Approximately 50% of all people living with Parkinson’s will experience some form of hallucinations or delusions, and the longer one lives with Parkinson’s, the greater the likelihood they’ll experience them.

Today we’re going to talk about what causes Parkinson’s disease psychosis, what hallucinations and delusions are, what makes some people more likely to experience them than others and what someone with Parkinson’s and their care partners can do to manage them.

What causes Parkinson’s disease psychosis?

Parkinson’s is a brain disorder associated with a loss of dopamine-producing nerve cells (neurons) deep inside the brain. Dopamine is a neurotransmitter (a chemical substance) that helps regulate the body’s movement, and it also allows us to think clearly and regulate our emotions. When you try to replace the dopamine that’s been lost in a person with Parkinson’s, it can cause the system to get out of whack which can impact thinking, how visual things are processed and more. Parkinson’s disease psychosis is therefore typically a side effect of the disease itself or the medications used to manage it.

As a result, it’s an ongoing balancing act for Parkinson’s doctors to prescribe enough dopamine to control a person with Parkinson’s motor symptoms, but not so much that the person experiences hallucinations and/or delusions.

What makes some people with Parkinson’s more susceptible to Parkinson’s disease psychosis?

Not everyone living with Parkinson’s will experience hallucinations and/or delusions, but there are several things that can increase your risk. Here are a few to look out for. Be sure to speak to your doctors and care partners if you notice any changes.

  • Decline in memory
  • Increased cognitive impairment
  • Increased motor symptoms and disabilities unrelated to Parkinson’s
  • History of depression
  • Increased sleep disturbances such as REM Sleep Behavior Disorder, sleep apnea, vivid dreaming and sleep interruptions
  • Vision problems such as blurry or double vision
  • Hearing problems
  • Aging (it’s common for people to experience vision and hearing problems as they age so the older one gets, the more likely they will be affected by hallucinations)
  • Medication changes such as new medication, dosage changes and drug interactions
  • Disease progression (70% of people who have been living with Parkinson’s for over 20 years will experience Parkinson’s disease psychosis)

What are hallucinations?

A hallucination is something someone sees, hears, smells, tastes or feels that’s not actually there. Essentially they’re tricks that the brain plays on the senses. It’s estimated that about 50% of people with Parkinson’s experience some type of hallucination over the course of having the disease. Most of the time these hallucinations are visual in nature.

For example, one person told us he often sees tiny people along the floorboards in his kitchen. Another one said he sees people who aren’t there when he walks into a certain room of his house. One doctor told us about a patient who regularly mistook her laundry piles for a person.

These visions appear clear as day to the person with Parkinson’s but cannot be seen by anyone else.

In some cases, the visions may be disturbing and cause emotional distress, but that’s not always the case. They may be friendly and not bothersome at all.

When people with Parkinson’s first start experiencing hallucinations, they typically experience them with insight. This means that they know what they’re seeing isn’t real, and they’re able to recognize it as a symptom of living with Parkinson’s.

On the other hand, when people lose insight, they begin to believe that the hallucinations are real. They may start talking to them, interacting with them and even try to draw their care partner into the scene with them. When their hallucinations reach this stage, they can go on for a very long time and cause hyper-agitation and aggressiveness, which can be very difficult for the care partner to witness and manage.

In addition, whether the hallucinations are distressing or not, just interacting with them can pose a potential risk of harm to them or anyone else in the room.

What are delusions?

Delusions are specific and fixed beliefs that are very real and true to the person experiencing them. They can contradict all semblance of reality and rational thought, but no amount of convincing could change what the person believes is true. Additionally, if you try to convince someone experiencing a delusion that it’s not true, they can become suspicious and doubt you which makes an already difficult situation even worse.

Delusions happen much less frequently than hallucinations. Only about 10% of people with Parkinson’s experience them, but because they’re often ongoing, involuntary and feel very real to the person, they can be much more difficult to manage and treat.

The most common delusions people with Parkinson’s experience are:

  • The belief that their spouse is being unfaithful
  • The belief that their care partner is poisoning them with their medications
  • The belief that people are stealing their stuff, or they’re going to steal it

Fortunately, many people with Parkinson’s have found ways to treat and manage the symptoms of Parkinson’s disease psychosis.

What’s the treatment for Parkinson’s disease psychosis?

The single most important thing to do when it comes to Parkinson’s disease psychosis is to tell your care providers and partners the minute you notice changes in your vision, hearing, thinking and behavior. The earlier they know what’s going on, the sooner they can begin interventions to help you feel better.

Once you bring your concerns up to your doctor, they will typically do a clinical evaluation, review your medications and dosage, assess your lifestyle and determine the severity of your symptoms. Depending upon what they find, they may refer you to counseling or therapy, adjust your medication, change your medication, eliminate medication or do all of the above. If none of those strategies work, they may try antipsychotic drug therapy to see if they can adjust chemical levels in the brain. This can bring with it an entirely different set of problems so it’s important to be invested every step along the way and be sure you’re well-informed before you move in that direction.

How to Care for Someone Who Experiences Hallucinations

If the person you care for experiences a hallucination, there are a few things you’ll want to do in the moment and others you’ll want to do when the moment passes.

The most important thing to remember is to never try and talk the person with Parkinson’s out of their hallucination. They are actively experiencing it and by trying to talk them out of it, they may either feel like they aren’t being heard or that their experience is being diminished.

What matters in the moment is their safety and your reassurance that they’re going to be okay. You might calmly say, “I understand that you’re seeing X. I’m not having that experience, and I just want you to know that everything is going to be okay, there’s nothing dangerous happening here and you’re safe.”

Other strategies Dr. Joanne Hamilton, PhD, ABPP-CN of Advanced Neurobehavioral Health of Southern California, shared with us are to:

  1. Turn on all of the lights to make the room as bright as possible as hallucinations often happen in low lights
  2. Have the person look closely at what they’re seeing as that can help reset the brain and make the hallucination end
  3. If the person does not have insight, give them a lot of reassurance, provide a distraction, move into a different room or suggest a new activity

Here are a few actions you can take once the hallucination has passed:

  • Talk to the person about it (most of the time, even if the person does not have insight, they will remember it when it’s over)
  • Tell their doctor and offer as much detail about the episode you can remember such as time of day, location and anything else like how tired or hungry/full they were that may have had an impact on the situation
  • Be sure to keep light switches in convenient locations. Since waking up and going to bed are the most prevalent times for people with Parkinson’s to have hallucinations, turn lights on fast and make sure they’re bright
  • Eliminate/reduce shadows in the house and be careful of where you place mirrors and reflective surfaces as they can play games with the mind
  • Investigate any environmental triggers that could be causing them with more frequency or regularity

How to Care for Someone Who Experiences Delusions

If the person you’re caring for experiences confusion or delusions, here’s what you can do in the moment:

  • Stay as calm and patient as you can and remember that this belief has nothing to do with you and only with what is going on in their mind
  • Remove any objects in the room that could pose a danger to them or to anyone else
  • Clear space so there are no tripping hazards and it’s easy for the person to move around
  • Do not try to reason with the person or convince them why their belief is false
  • Reassure them that everything is going to be okay
  • If the person becomes aggressive, minimize your movements and remain calm
  • Ask the person to talk to you about what they are feeling and really listen to them so they don’t feel threatened
  • If you feel like you or they are in danger, call 911

Here are a few actions you can take once the delusion has passed:

  • Inform their doctor immediately
  • Educate others who may care for the person how to handle the situation if it happens
  • If the person is open to it, discuss it with them and ask them to explain what the experience is like for them and if there’s anything different you could do next time
  • Seek expert advice if you feel like you need support in managing these episodes

Bringing Light to Darker Side of Parkinson’s

Often the hardest part of Parkinson’s disease psychosis is the fear of the unknown. As a person with Parkinson’s, you may worry about having hallucinations and/or delusions and not being able to do anything about it. As a care partner, you may worry that you won’t be able to help your person with Parkinson’s feel safe if something does happen.

The good news is you now have information on what Parkinson’s disease psychosis is; the risk factors to look out for; biological and environmental triggers that can bring them on; and how to manage them if they show up.

But what about the emotional toll these types of symptoms can place on you over the long-term as the person with Parkinson’s or as a care partner?

The diagnosis of a chronic illness in and of itself requires a lot of adjustments. When you add something like Parkinson’s disease psychosis into the mix, it’s important that you also add another level of self-care to your everyday life.

Self–Care for the Person with Parkinson’s

  • Join a Parkinson’s support group if you don’t already belong to one. Talk about your experiences, ask for help if you need it and share what’s worked and not worked for you.
  • Offer to have coffee with someone you know has been newly diagnosed and offer them support and encouragement. (There’s nothing more effective for getting out of our own lives than to find someone else to help.)
  • Make time to exercise and get out in nature every day.
  • Communicate frequently with your doctors and discuss the possibility of tweaking your medications if your symptoms become worse.
  • Rest when you need it.
  • Plan a day trip or a vacation and get away from your normal surroundings. (Just make sure you have someone to go with you.)
  • Take control where you can and keep authoring your own story.
  • Practice meditation or yoga or Tai Chi to relax and calm your mind.
  • Start a new project that you’re excited to work on every day.
  • Communicate with your care partners and let them know how they can best help you.

Self-Care for the Care Partner

  • Join a Parkinson’s care partner support group if you don’t already belong to one. Talk about your experiences and ask for help if you need it.
  • Allow others to help you care for your loved one with Parkinson’s. Take breaks, get outside and breathe in the fresh air. Connect with the person you are aside from being a care partner.
  • Do activities you love and that help you keep your mind off your role as a care partner.
  • Get a treatment you love such as a massage or reiki or go to a yoga class, run or play tennis. Whatever it is, do something that brings you joy every day.
  • Seek therapy or counseling if you want extra support.
  • Identify the people in your life you can trust and share your experiences with them. You don’t have to take all of this on on your own.
  • Be open to what may be the next steps for you and your person with Parkinson’s… even if it’s not what you imagined. One of the most common reasons for nursing home placement for people with Parkinson’s is non-remitting psychosis. If it gets too much for you to manage it on your own, consider potential arrangements that would be best for everyone.
  • Keep an open line of communication to your person with Parkinson’s care team and don’t be afraid to ask for information, help or resources

What’s next?

If you or a loved one are living with Parkinson’s disease psychosis, please work closely with your movement disorder specialist to assess your unique situation and create a treatment plan that’s right for you. No two people experience Parkinson’s disease psychosis in the same way so it’s critical to understand and evaluate all of your potential options. Throughout the process, be sure to make note of how you feel, how you behave and how medications or therapies are impacting you on a regular basis so your doctors and care partners can keep an up-to-date record of your experience.

We’d like to thank Dr. Mark Mapstone, Dr. Joanne Hamilton, Dr. Daniel Weintraub and several people with Parkinson’s and their care partners for their expert guidance during the writing of this post.

For Further Study

Parkinson’s Disease – The Quintessential Neuropsychiatric Disorder

Parkinson TV – Season 2, Episode 2: Parkinson’s Disease Psychosis

 

Acadia Pharmaceuticals

 

This content was supported in part by Acadia Pharmaceuticals. To learn more about Parkinson’s disease psychosis, visit moretoparkinsons.com

14 Comments on “How to Bring Light to the Darker Side of Parkinson’s: A Primer on Hallucinations and Delusions and How to Manage Them

    • L Wolf

      July 18, 2018 at 6:01 pm Reply

      While the information provided in this blog appears to be helpful, I find that its content is provided by a pharmaceutical company that frequently runs a commercial on television that causes harm to Parkinson’s people who have no problems with hallucinations or delusions and are trying to continue to work. They do not provide the comment that is in this blog about having the disease “over 20years.” It is so discouraging to try to convince the people you are working with/for or your friends that you are not having these issues that they hear about in these ads. I would rather you had independent health providers provide information in a blog like this. I tend not to trust people who are trying to sell a product. Davis Phinney does so much good but I am afraid you have dropped the ball here. Is it a question of funding? Sad,… having Parkinson’s Disease is hard enough.

      • Melani Dizon

        July 24, 2018 at 1:38 pm Reply

        Thank you so much for voicing your concerns, Loretta. We want to let you and all of our readers know that Acadia provided funding to allow us to research and write this piece, but we did so completely independently and with the advice of trusted partners and experts in the field. Those who choose to sponsor our work do not get to preview or approve content. We own the creation of it from beginning to end.  We share a common ground with our sponsors, disease state education, yet we always put the needs of our community first. 
         
        Just like The Victory Summit® events and Every Victory Counts® manual, we receive critical funding from pharmaceutical, medical device and other commercial entities, to ensure the best possible product is delivered to our community, but the content is completely owned and vetted by the team at the Davis Phinney Foundation. It is because of the support of sponsors and donors that we are able to do the work we do to help people live well with Parkinson’s.

    • Carolyn Allen Zeiger, PhD

      July 18, 2018 at 7:20 pm Reply

      As a retired psychologist with three family members who have PD, I congratulate you on doing a great job of explaining PD psychosis and how to live with it!

    • DIANE Jager

      July 20, 2018 at 1:50 pm Reply

      What a great article. Written with great clarity and should be read by all with Parkinson’s. Wow it’s such a strange disease, with no real breakthrough RX for years.
      Thank you DP foundation

    • Nancy D. Floodberg

      July 21, 2018 at 12:01 am Reply

      Thank you! This is an excellent article on Parkinson’s psychosis; both clear and comprehensive. I have shared it with family and friends, as well as our caregivers, and all have found it most helpful. For example, today, while at Rock Steady Boxing, my husband’s caregiver noticed him staring off, vacant eyed, into the mirror. Remembering the article, she turned his wheelchair away, and he immediately resumed focus on the task at hand.

      A situation I have found can instigate or worsen Parkinson’s psychosis, which I did not see mentioned, is an assault to one’s physical system, such as an infection, a UTI (urinary tract infection) being a common culprit. Whenever my husband suddenly has an isolated bout of or increase in hallucinations and/or delusions, the first thing we do is rule out a UTI by taking a urine sample in for analysis. With immediate treatment for positive results, we consistently see a significant reduction in symptoms of psychosis.

      Again, many thanks for an excellent article and for helping us to “live well with Parkinson’s”!

      • Alex Reinhardt

        July 24, 2018 at 2:06 pm Reply

        Thanks for commenting, Nancy. There can sometimes be a provoking factor that contributes to hallucinations like dehydration or an infection. It’s important to be proactive when ruling out other factors, so consider these and then schedule an appointment with your doctor to see if any adjustments need to made with medications.

    • Karen MacKay

      July 22, 2018 at 5:22 pm Reply

      Very helpful and reassuring. Thank you.

      • Alex Reinhardt

        July 24, 2018 at 1:43 pm Reply

        You’re welcome, Karen!

    • Kathy Morrison

      July 28, 2018 at 10:13 pm Reply

      Thank you for this article and for the comments. I found several useful thoughts including how to talk to a person who is having a hallucination by saying you understand the person is experiencing X, that you are not experiencing it, that everything is going to be okay, that the person is safe, etc.
      The idea of having bright lights and being careful about mirrors and reflective materials is new to me. Again, thank you to everyone here.

      • Anna Sable

        July 30, 2018 at 11:12 am Reply

        Kathy, thank you for sharing. We are so glad this article provided you with helpful tips and new ways to think about approaching this little-discussed symptom.

    • Kristin Fox

      August 30, 2018 at 7:35 am Reply

      Last summer my husband was suffering from extreme Parkinson’s psychosis. His neurologist prescribed Nuplazid. It took a while to start working, but it does work. It’s a miracle drug! He is hallucination/delusion free.

    • Diane Silver

      September 1, 2018 at 11:29 am Reply

      My 47 year old son has young onset PD and has experienced psychotic delusions from even very low doses of medications used to treat (ex: dopamine agonist) No mention was made of huge problem we’ve faced in getting safe and competent treatment in a mental health setting for someone with PD. No one wants to admit those who pause a fall risk, etc. Very frightening – and traumatic!!

    • Bill Cooper

      December 10, 2018 at 1:08 am Reply

      My 79 year old mother has Parkinson’s with dementia and hallucinations. She has a balance and walk problem, but her dementia and hallucinations are by far the biggest issue. My father passed away in April and that threw my mom for a loop. We have moved her into an Assisted Living facility and also put a camera in her room. The hallucinations have been getting worse and worse. She now sees people in her room all of the time. She interacts with them and it has altered her entire day and personality. She see children at times and thinks she needs to babysit so she skips dinner and lunch often. She not only cannot tell time anymore, but she has no idea whether its night or day. She gets up at 3am and get dressed. She’s called us all times of the night not sure where she is or what time it is. She sees my dead father and thinks he is ignoring her. She sees people we have no idea who they are. She wants to bring them food, buy them gifts and creates these complex situations with them. We have seen video where she talks to them. Its has gotten to the point that she lives in her fantasy world more than the real world. She sees version of myself and my sisters and things she has another family. She actually calls them the “other Bill and …”. She is on a very low dose of the dopamine pill and her Neurologist said if we reduce it she won’t be able to walk. She can live at the Assisted Living as long as she can walk and handle her own hygiene. We had this problem with my father and he had to go into a nursing home once he couldn’t handle his bathroom without full help. This has be extremely stressful on our family. We always knew my father was the mentally aware parent (very sharp), but once he passed my mother went off the deep end. My mom not only hallucinates but she cannot handle normal functions. She has a hard time using the phone, she cannot figure out the remote, she cannot change her thermostat and she cannot even follow a very simple process. I appreciate your article, but its very hard caring for folks that cannot function mentally. Along with all of this she’s quite the hypochondriac. Every pain she gets is either a zero or ten. Nothing in between. We took her to the ER this week because she thought her headache was a tumor. After 5 hours in the middle of the night, she was normal and had nothing wrong. Just a normal slight headache. God help us I hope we can last.

      • Melani Dizon

        December 10, 2018 at 9:15 am Reply

        Dear Bill – Thank you for reading. I’m so sorry to hear about your mom and the challenges your whole family is facing right now. It sounds like you are doing everything you can, and right now she is in a place that can care for her. The hallucinations are certainly a dark side of the medications people rely on to continue functioning. I sincerely hope that you, your siblings and your mom are able to find a little bit of peace during this truly difficult and frustrating time. As they often say, an illness tends to magnify who we are and that’s not often an easy road to travel. We will keep you in our thoughts and continue to wish all of you more health and joy in the future. In the meantime, you might enjoy this video on care partners that offers some tools and strategies to deal with the more difficult times: https://www.davisphinneyfoundation.org/blog/rewriting-rulebook-parkinsons-care-partners.

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