Hallucinations are a common symptom of Lewy Body Dementia. They can take many different forms, including visual, auditory, olfactory, and gustatory hallucinations. Many people with Lewy Body Dementia experience them on a regular basis. If you are caring for someone who has Lewy Body Dementia and they are experiencing hallucinations, it is important to understand what they are and how to deal with them. Lewy Body Dementia hallucinations can be frightening and confusing. But they can also be non-threatening and benign.
Lewy Body Dementia hallucinations are often visual, but can also involve other senses like smell, touch, or sound. These hallucinations can be very vivid and realistic, and often involve people or animals that are important to the patient. For example, a patient might see a small child playing in their living room, or their deceased spouse standing at the foot of their bed. While Lewy Body Dementia hallucinations are not typically dangerous, they can be very upsetting and confusing for patients.
Different Types of Lewy Body Dementia Hallucinations
Lewy Body Dementia – Understanding the Healing that is Happening: Hallucinations a journey into healing.
A personal story from a naturopath, and professional counselor whose father had Lewy Body Dementia. It chronicles her heartbreaking journey and offers wisdom and strength
Visual hallucinations can be very vivid and often involve seeing things that are not really there, such as people, animals, or objects. The person may also see things that are distorted or changed in some way. For example, a person with Lewy Body Dementia may see a loved one’s face change into that of a stranger. Visual hallucinations can be frightening and confusing for the person with Lewy body dementia and for those around them.
Some people with visual hallucinations see people sitting next to them. They might offer them food and have long conversations with them. Other common hallucinations can be seeing bugs around them. Visual hallucinations are different from delusions, which are false beliefs that a person holds onto despite evidence to the contrary.
Here are a few hallucinations that I’ve heard of people with LBD having:
- other people are living in their bedrooms and have taken their clothes and blankets
- thinking the rooms of the house have been moved
- imagining another story added to the house
- being locked in a jail
- construction workers in the backyard
- someone in the mirror
- television shows are real
- stray dogs and cats under the furniture
- little men in the fireplace
- people playing a soccer game in their bedroom
- worms in a bed
- business meetings
- people in the air vents
Auditory Hallucinations with Lewy Body Dementia
Auditory hallucinations are a common symptom of Lewy Body Dementia. Patients may hear voices that are not really there, or they may experience other auditory hallucinations. These hallucinations can be very distressing for patients and their families. In some cases, auditory hallucinations may be the first symptom of Lewy body dementia. Other times, they may develop as the disease progresses.
Treatment for auditory hallucinations generally focuses on managing the underlying cause of the hallucinations. In some cases, this may involve medications or other therapies. Patients should be evaluated by a doctor to determine the best course of treatment.
Olfactory hallucinations are a type of hallucination that involves the sense of smell. Experiencing an olfactory hallucination may involve smelling something that is not actually present, or smelling something differently than it actually smells. Olfactory hallucinations are fairly common in Lewy Body Dementia and can occur even in the early stages of the disease.
For many people with Lewy body dementia, olfactory hallucinations are one of the first symptoms they experience. Olfactory hallucinations can be caused by a variety of things, including damage to the olfactory bulbs or other parts of the olfactory system, changes in neurotransmitter levels, or changes in brain activity. Treatment for olfactory hallucinations usually involves addressing the underlying cause, if possible.
Gustatory hallucinations are relatively common in Lewy body dementia. These hallucinations are vivid, often unpleasant tastes that seem to originate from nowhere. In some cases, the taste may be motivated by something the person has recently seen or eaten.
For example, if a person with Lewy Body Dementia sees someone eating ice cream, they may suddenly taste mint ice cream themselves. In other cases, gustatory hallucinations may be completely random and unconnected to anything in the person’s environment.
These types of gustatory hallucinations can be very distressing, as they can make it difficult for a person to enjoy food and eat a healthy diet. gustatory hallucinations are also one of the primary symptoms of Charles Bonnet syndrome, which is a condition that causes people with vision loss to experience visual hallucinations.
Treatment for gustatory hallucinations typically involves managing the underlying cause, such as addressing any nutritional deficiencies or treating the underlying Lewy Body Dementia. In some cases, medications may also be used to help reduce the frequency and intensity of gustatory hallucinations.
Real-Life Examples of Lewy Body Dementia Hallucinations from the Author
My husband’s first hallucination that I know of was when he said he saw a big mouse in the corner counting money. He knew that it was a hallucination but it still looked very real to him. A frequent hallucination of his is when he is exercising and he sees a man to the side of him. Sometimes it has been his brother-in-law that passed away years ago. Other times he has seen a gypsy lady watching him exercise.
An amusing hallucination he had was of me riding a bike inside the house. Once he thought one of our dogs had two heads. One evening when we were watching television he said there was a boat in the garage. I personally love this one because when I was a young girl I wanted to be a cowgirl — in his hallucination I was wearing a cowgirl outfit!
Hallucinations when Waking Up are Common with Lewy Body Dementia
Many of his hallucinations happen when he wakes up from a nap. One day after waking he thought he saw Obama standing in my office. Another time he said he saw me in the ceiling. There were other times that he thought his side table next to his chair was a walker and tried using it for one, pushing it across the room.
There have been some very bad lows in this Lewy Body Dementia roller coaster we’ve been traveling on for a few years. One of the worst things that happened was he left our backyard (running faster than he had moved in months) and thought there were people chasing him that wanted to take his body parts out. He was very frightened and kept yelling for help.
When he was hospitalized he thought there was construction work going on in the hall (there wasn’t). He also thought that every time a doctor would come in to talk to him that it was a business meeting. When they would leave he would say, “I think that meeting went great and that they will sign the contract”.
How to Deal with Lewy Body Dementia Hallucinations — Agree, Disagree, or Redirect?
Hallucinations can be very frightening for both the person with dementia and their caregivers. However, there are some strategies that can be used to deal with hallucinations. One option is to agree with the hallucination. For example, if a person with dementia sees a person in the room, you could say, “Yes, I see him too.” This can help to create a sense of connection and ease anxiety.
Another option is to redirect the conversation. For example, if the person with dementia is fixated on an object, you could try to distract them by talking about something else. It is also important to provide support and reassurance. For example, you could say, “It’s okay, I’m here with you.” By using one of these strategies, you can help to minimize the impact of hallucinations and create a more supportive environment for the person with dementia.
It is important to keep in mind that the person with Lewy body dementia is not intentionally trying to upset you and that they are not responsible for their hallucinations. With understanding and patience, you can help them deal with their hallucinations.
UTIs can Worsen and Increase Hallucinations
A urinary tract infection (UTI) is a common condition that can cause a range of symptoms. In some cases, UTIs can worsen and lead to visual hallucinations. If symptoms worsen suddenly, check them for a UTI.
Medication for Managing Lewy Body Dementia Hallucinations
One type of treatment that may be prescribed for Lewy body dementia hallucinations is an antipsychotic medication. These drugs can help to reduce the intensity and frequency of hallucinations, making them more manageable for people with Lewy body dementia. Antipsychotic medications can have side effects, so it is important to discuss the risks and benefits with a doctor before starting any new medication.
There are also other types of drugs that may be prescribed to help manage the symptoms of Lewy body dementia, such as cholinesterase inhibitors and levodopa. Treatment for Lewy body dementia is typically individualized, so it is important to work with a doctor to find the best plan for managing the symptoms.
Nuplazid (pimavanserin) for Parkinson’s Disease Hallucinations
Nuplazid (pimavanserin) is a medication approved by the FDA for the treatment of hallucinations and delusions associated with Parkinson’s disease. It is thought to work by blocking serotonin receptors in the brain that are involved in these types of hallucinations. Nuplazid is generally well-tolerated, with the most common side effects being nausea, vomiting, and diarrhea.
It may also cause some patients to experience dizziness, drowsiness, or fatigue. Nuplazid should be used with caution in patients with a history of psychiatric illness. If you are considering Nuplazid for the treatment of your Parkinson’s disease hallucinations, talk to your doctor to see if it is right for you.
My husband with Lewy Body Dementia takes Nuplazid with amazingly good results for slowing down his hallucinations and delusions.Author
Quetiapine or Seroquel for Hallucinations
Quetiapine, also known by its brand name Seroquel, is a medication that is typically used to treat bipolar disorder and schizophrenia. However, it can also be effective in treating hallucinations. Quetiapine works by blocking the neurotransmitter dopamine, which is thought to play a role in causing hallucinations.
The medication is generally well-tolerated, with the most common side effects being drowsiness and dry mouth. Quetiapine may also cause weight gain and low blood pressure. If you are experiencing hallucinations, Quetiapine may be an effective treatment option for you. Talk to your doctor about whether Quetiapine is right for you.
Rivastigmine is a medication that is used to treat dementia. It is also sometimes used to treat hallucinations. Rivastigmine works by increasing the amount of a chemical called acetylcholine in the brain. This chemical is important for memory, thinking, and reasoning. Rivastigmine is available as a patch, an oral tablet, and an oral solution.
The patch is usually worn for 24 hours and then replaced. The oral tablet and solution are taken twice a day. Rivastigmine may cause side effects such as nausea, vomiting, diarrhea, headache, and dizziness. If you experience any of these side effects, contact your doctor.
Clozapine is an atypical antipsychotic medication approved by the FDA for treating schizophrenia. However, clozapine has also been found to be effective in treating hallucinations associated with Lewy Body Dementia. Clozapine works by reducing the activity of dopamine in the brain. This helps to reduce the frequency and severity of hallucinations.
In addition, clozapine may also help to improve thinking and behavior. If your loved one is experiencing hallucinations, talk to your doctor about whether clozapine might be right for you.
Hallucinations are different for everyone and can be caused by a number of things, like Lewy Body Dementia. It’s important to keep track of the hallucinations, so you can better understand what’s causing them and how to manage them. There are different types of medications that can help with hallucinations, so if you or your loved one is struggling, don’t hesitate to reach out to a doctor or mental health professional.
Do you know someone who experiences hallucinations? What type of support have they found helpful? Let us know in the comments below.