When some individuals are in the mid to latter stages of dementia, it is not unusual for them to experience hallucinations. (Although not everyone with dementia will experience hallucinations.) Most often these are visual, but they can affect all of the senses. They can be very upsetting to caregivers, and to the person with dementia, but I hope that by providing a little information about what is going on, as well as some suggestions for how to handle them, may be of help. This information is taken from a fact sheet provided on the Alzheimer’s Society‘s website.
It should be noted that a person with dementia will experience changes in visual perception. These are not actually hallucinations, but are instead “mistakes” made by the brain in interpreting (or making sense out of) what it sees. One good example of this from personal experience — A resident of a long-term care facility once reported me that a particular nurse and aide were having sexual relations in her room on the night previous. Even though it’s not outside the boundaries of possibility for such things to happen, I thought it highly improbable in this case given what I knew about the two people that were named. What I eventually figured out was that the two staff members had come into the room during the night to provide care for the resident’s roommate, without turning on the overhead lights. It was very reasonable for the woman to see two silhouettes moving around behind a curtain in low light, hearing them talking softly, and assume that another kind of activity was taking place.
Individuals with dementia may, at some point during the progression of the disease, experience difficulty expressing themselves. They may have a hard time finding the words to describe what they are seeing. It is important to keep this in mind when attempting to interpret a person’s story about his experience. Note, too, that these persons may be particularly upset or frightened by hallucinations that persist for a long period of time or frequently. Such symptoms can be particularly troublesome, both for those experiencing them, and for caregivers and others in his environment. They can significantly affect behaviors and interactions with others.
A true visual hallucination involves seeing things that are not there. They can be experienced by people who do not have dementia as well, often as a side effect of certain medications. For instance, when I was coming out from under anesthesia after a recent surgery, I thought that my room was full of cats. Persons with Lewy-Body Dementia are prone to a very particular kind of visual hallucination, often of small children or animals. There are also some reports that those with LBD experience hallucinations at an earlier stage of the disease than do those with Alzheimer’s.
In our culture, hallucinations are often associated with mental instability, and so those who are experiencing them may be reluctant to report or discuss them. They can be a temporary symptom, not causing any significant problems in the long run. However, they may also indicate that there is a serious problem that needs intervention. A person who is having visual hallucinations may see only shadows or flashes of light. Or he may see persons (known or unknown), animals, distorted faces, landscapes, or bizarre situations. It should be stressed that there are other causes of hallucinations, including seizures, headaches, infection, and strokes, which may temporarily affect the portions of the brain controlling visual perception. Other types of injury and illness, as well as some medications, can also cause hallucinations. I have also known of persons who were near death to report seeing people and places, although my own belief system leads me to wonder if this is a true hallucination. The causality of these manifestations should be investigated by the person’s physician.
Here are some other possibilities that need to be investigated, which might explain what the person with dementia is reporting:
1. It’s not uncommon for persons with dementia to misinterpret what they see, due to lighting in the environment. He may see a reflection in a mirror, or a photograph on the wall, as an intruder looking through a window at him. I’ve seen a person think that flecks on the linoleum are insects to be swatted or picked up. And a common strategy used to discourage wandering is to put a large black rug in front of a door. Some individuals with dementia will see this as a large hole in the ground, and hence stay away from the door.
2. It could be that the problem lies more in the person’s use of language, perception of time, or memory lapses. For instance, it’s not uncommon for a person with word-finding problems to substitute one word for another. And if a person has to go in search of a caregiver to report seeing something, he may not remember accurately just what it was that he did see.
3. Consider a medical evaluation to determine if there might be some other reason to account for the hallucinations other than the dementia.
4. Could the culprit be a medication side effect or interaction?
5. Be sure that the person has had a recent check of visual acuity. The solution may be as simple as needing new glasses.
Going back to the issue of visual perception, it is possible that the changes may be related to the normal aging process or to other health problems. Some strategies that can possibly help here include:
1. Ensure that the environment is adequately lighted. This can also be beneficial in preventing falls, as well as other problems.
2. Reduce shadows in the environment, or surfaces with busy patterns. (I once worked in a facility where the floor in the therapy gym was patterned with dark stripes. One of our patients very deliberately took large exaggerated steps over the stripes, seeing them as obstacles to be overcome.) Some people may find mirrors and television screens a problem. (For instance, one resident told me about the woman on the television who kept talking to her.)
3. Be sure that the person’s eyes are checked regularly. Also ensure that he wears his glasses, and that they are clean and in good repair. (Are the glasses he’s wearing his, or do they belong to his roommate?) If he has cataracts, perhaps consider the appropriateness of having them surgically removed.
Auditory hallucinations can involve hearing voices, or it can be a matter of hearing sounds or distortions of sounds where none exist. They are actually rather rare in individuals with dementia, and are more commonly found in mental illnesses such as schizophrenia. As with visual hallucinations, it is important to determine whether they might be due to illnesses other than dementia, or be caused by medications. Make sure that the person’s hearing is adequate, and if his hearing aid is working.
Consider whether the person may be experiencing tinnitus. This is a condition that is found in persons with increasing age, or who have certain health problems. It is often perceived as hallucinations. I am plagued with tinnitus myself, and I can vouch for the fact that it can be quite distracting.
One possible indication that a person may be having auditory hallucinations is if he appears to be having a conversation with someone who is not there. Be careful, though. It’s not uncommon for “normal” people to talk to themselves from time to time.
A person is less likely to have auditory hallucinations, or pay attention to them, if he has company. One possible strategy for dealing with this symptom is to provide a companion for the person, or give him something else to listen to — such as a television or radio.
Other, less common, sensory hallucinations include gustatory (taste), olfactory (smell), and tactile (feeling something on or under the skin or in the mouth). Again, it is important to determine if there is another possible explanation for what the person is reporting. Many medications can alter the person’s sense of taste or smell, or can alter the person’s ability to sweat.
Some people do experience hallucinations that affect multiple senses at the same time. It should be noted that this condition is usually due to a serious toxic or infectious illness, or can be experienced due to acute involvement of alcohol or other medications. It is usually a medical problem that should receive immediate attention.
If you suspect that a person is actually hallucinating, try to engage them in a calm and reasoned conversation about what they are experiencing. Is the person able to tell you what it is that they are seeing/hearing? Can he understand that this is not really happening? At some point, however, it’s going to be unlikely that you will be able to reason with the person, and any effort to do so will be met with argument and irritability. This isn’t constructive, and can lead to an outbreak of temper on one or both sides.
Sometimes the best approach is reassurance, with distraction. Stay with the person, and try to calm him down if they’re frightened or agitated. Change the lighting, turn on/off the television, take him to a different room, or provide him with some activity to otherwise occupy their attention. If the hallucinations involve multiple senses, if they are severe or causing the person a great deal of fear, or if they frequently recur or elicit extreme behavioral responses, consult a physician. If you do decide to seek medical advice, be sure to let the doctor know about the following:
1. Observe, and take accurate notes about what the person reported seeing or sensing, when it occurred and if there was a particular event that happened prior to it, where it occurred, how long it occurred, how the person responded, and the words that were used to describe it.
2. Current and recent medications (including self-prescribed ones)
3. Recent and past physical health problems
4. Recent bereavements or other emotionally upsetting events
5. Information about visual or hearing acuity problems, and glasses or hearing aids
6. Use of alcohol or other recreational drugs, including overdoses