As an experienced hospice nurse, I understand the challenges faced by terminally ill patients and their families when dealing with hallucinations, especially in conditions like Lewy Body Dementia, Parkinson’s disease, and other neurodegenerative diseases. Hallucinations can be distressing and confusing for patients and their loved ones. Still, with the right approach and a combination of pharmacological and non-pharmacological methods, we can help manage these symptoms to improve comfort and quality of life.
Understanding Hallucinations
Sometimes, people may see, hear, or feel things that are not there. These are called hallucinations. Hallucinations can happen to anyone, but they are more common in people who have certain health problems, such as Lewy Body Dementia or Parkinson’s disease. These health problems can affect the brain’s work and make it harder to tell what is real and what is not.
Hallucinations can be scary or confusing for those with them and those around them. They can also make it harder to do everyday tasks, such as driving, working, or caring for oneself. That is why it is essential to understand what causes hallucinations and how to cope with them.
Best Practices for Managing Hallucinations
Hallucinations can be hard to deal with, but there are ways to help yourself or someone else. There are two main types of methods: medicine and other strategies. Medicine can help reduce the frequency and intensity of hallucinations by affecting the brain chemicals involved in the disease process. However, the medicine may not work for everyone or have side effects. Therefore, we must try both non-pharmacological methods and medications as appropriate.
Non-Pharmacological Interventions
Non-pharmacological methods are ways to help yourself or someone else who hallucinates without using medicine. These methods can make the person feel more comfortable and less upset by the hallucinations. They can also help the person stay in touch with reality and focus on other things. Some of the non-pharmacological methods are:
Reality Orientation: This means helping the person remember where they are and what is happening. You can gently tell them the date, time, and place. You can also show them things that are familiar to them, such as photos, calendars, or clocks. This can help the person feel more grounded and less confused.
Distraction and Redirection: Helping someone pay attention to something else when hallucinating. You can ask them to do something they like or are good at, such as playing a game, doing a puzzle, or making a craft. You can also talk to them about something that interests them, such as their family, friends, or hobbies. This can help the person forget about hallucination and enjoy themselves.
Validation and Empathy: This means listening to the person and understanding their feelings. You can say things like, “I can see that you are scared,” or “I know this is hard for you.” You can also ask them to tell you more about what they see, hear, or feel. You can say things like “What does it look like?” or “What does it say to you?”. This can help the person feel you care and are not judging them.
Optimizing the Environment: This means making the place where the person lives or stays more comfortable and familiar. You can reduce the noise by turning off the TV or radio or closing the windows. You can also ensure enough light, such as turning on the lamps or opening the curtains. You can also put things the person likes or recognizes, such as pictures, flowers, or stuffed animals. This can help the person feel more relaxed and safer.
Reassurance from Caregivers: This means having someone kind and supportive to help the person. This can be a family member, a friend, or a professional. The caregiver can stay with the person, hold their hand, or hug them. The caregiver can also say things like “You are not alone” or “I am here to help you.” This can help the person feel more calm and secure.
Pharmacological Interventions
Sometimes, non-pharmacological methods may not be enough to help yourself or someone else who hallucinates. In that case, you may need to use medicine to reduce the hallucinations or make them less bothersome. However, medicine is not always the best option, especially in hospice care, where we want to make the person as comfortable and safe as possible. That is why you should always talk to your doctor before using any medicine and follow their instructions carefully.
Two main types of medicine may help with hallucinations:
Antipsychotic Medications: These medicines can affect the brain chemicals involved in the disease process. They can help lower the frequency and intensity of hallucinations. However, they can also have side effects like drowsiness, confusion, or movement problems. They can also interact with other medicines that the person may be taking. That is why they should be used in low doses and only when necessary.
Anxiolytics: These are medicines that can help reduce anxiety and agitation that hallucinations may cause. They can help the person feel calmer and more relaxed. However, they can also have side effects, such as drowsiness, dependence, or withdrawal symptoms. They can also interact with other medicines that the person may be taking. That is why they should be used sparingly and only when needed.
If your loved one has Lewy Body Dementia or Parkinson’s Disease, you should ask the doctor to confirm with a pharmacist before using any medicine. These diseases can make a person more sensitive to the effects of drugs and may cause more problems. The doctor and the pharmacist can help you find the best medicine and dose for your loved one.
Conclusion
Managing hallucinations in hospice care requires a compassionate and personalized approach. As hospice nurses, we strive to provide comfort, empathy, and support to patients and their families during this challenging time. By combining non-pharmacological techniques with the judicious use of medications, we can create a care plan that respects each patient’s unique needs and helps them find peace and comfort in their final journey.
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Free Daily Symptom Tracker: Each headache, flare, or fatigue spike reveals a clue. This two-page Daily Symptom Tracker records sleep quality, food intake, triggers, severity, and effective relief methods—all in one place. Use it daily for 31 days and share the pages with your healthcare provider or health navigation expert. Together, you can move from guessing to addressing the root cause. Instructions on how to use the free daily symptom tracker and the free daily symptom tracker.
This site uses Amazon Associate links, which means I earn a small commission when you purchase books or products through these links—at no extra cost to you. These earnings help me keep this website running and ad-free, so I can continue providing helpful articles and resources at no charge.
If you don’t see anything you need today but still want to support this work, you can buy me a cup of coffee or tea. Every bit of support helps me continue writing and sharing resources for families during difficult times.
Compassion Crossing Academy — Free and paid online courses are available to teach caregivers, nurses, social workers, chaplains, end-of-life advocates, and educators, including death doulas, how to confidently coordinate complex care.
The Death Deck is often a wonderful conversation starter.
Compassion Crossing, LLC, via Peter M. Abraham, BSN, RN, EOLD, offers on-site services in Madison County, KY, as well as in the seven nearby counties—Clark, Estill, Fayette, Garrard, Jackson, Jessamine, and Rockcastle—and provides virtual options when no local provider is available.
Hospice Buddy: Although Jamie Haberman, RN, CHPN, isn’t a certified end-of-life doula, her virtual services are highly valuable.
Currently, no official organization regulates end-of-life doulas (EOLDs). Remember that some EOLDs listed in directories may no longer be practicing, so it’s important to verify their current status.
End-of-Life Doula Schools
Before you consider a death doula school, please volunteer with a local hospice provider as a “companion volunteer” to gain experience with strangers who are dying, as well as with family and staff dynamics. The author also recommends reading the article Economic rant: The death doula crisis we aren’t talking enough about, as most death doula schools do not emphasize that being a death doula is a calling rather than a career.
The following are end-of-life (aka death doula) schools for those interested in becoming an end-of-life doula:
Compassion Crossing Academy: Although it isn’t a dedicated death-doula school, it offers unique classes that can help death doulas expand their practice. It serves as an important resource for individuals looking to deepen their understanding and grow in this meaningful profession.
Remember that there is no official accrediting body for end-of-life doula programs. Certification simply shows you’ve completed an unaccredited course and received a certificate of completion. It’s advisable to have discovery sessions with any death doula school you’re considering — even if it isn’t listed here — to see if it meets your needs. Also, ask questions and reach out to references, such as former students, to assess whether the school provided a solid foundation for launching your own death doula practice.
