Bugs crawling under the bed and up your legs; glass shards floating in your drinking water; phones that keep ringing but no one is there upon answering; people barging into your room and shouting at you in the middle of the night. . . Hallucinations can be quite disturbing!
Unfortunately, hallucinations are a common symptom of dementia. About 50% of patients with Alzheimer’s disease will experience hallucinations, most frequently during the moderate to late stages of the disease—Stages 5 and 6. Patients experiencing sundowners have an increased incidence of hallucinations. Hallucinations are often the first noticeable symptom in Lewy body disease, affecting two of three patients. In other dementia-related conditions, such as vascular dementia, hallucinations may or may not be present at any given stage.
Differing from delusions, which are a set of unshakable false beliefs, hallucinations are sensations that appear real but are actually created in the brain. Hallucinations are frequently visual and auditory, but olfactory and tactile hallucinations have also been documented. Some hallucinations are harmless and appear to be non-threatening; some patients are even amused by them. But hallucinations can also be frightening and threatening, triggering defensive behaviors that may be harmful for the patient and others. It is not uncommon to hear of a patient running out of his house in the middle of the night to escape from intruders, or refusing to drink or eat a meal because of the bugs crawling on the plate! Hallucinatory experiences may also include sensing the presence of people or animals, as well as feelings of floating or falling. Patients suffering from hallucinations are at increased risk of anxiety, panic attacks, agitation, and behavioral problems.
Like dreams, hallucinations are often a blend of fragments of one’s actual past experiences—one’s own memories—with events seen on the news or TV programs. These fragments are bound together by strong feelings such as love, fear, or hate. A California resident who insisted on hiding under her bed because she kept hearing bombs exploding, it turns out, had actually lived in London during the German WWII aerial attacks. Even though the bombing was now a hallucination, the fear related to it stemmed from a very real long-term memory.
Watching a loved one suffer from hallucinations is extremely distressing for the caregiver. His first instinct is to explain to the patient that what she is experiencing is not real. This, however, will often just increase the patient’s sense of urgency and agitation. To her, at that moment, the hallucination is real. Bombs ARE falling! Bugs ARE crawling! Intruders ARE here! The caregiver will feel powerless in combating an imaginary enemy, while coping with its consequent very real anxiety and fear.
When encountering someone suffering from a frightening hallucination, foremost keep calm. Try to understand the nature of the hallucination and the feelings associated with it. Do not attempt to debunk or explain away the hallucination. Validation is key. Instead, try to insert yourself into the hallucination, making it believable to yourself as well, so that you can act as a trusted ally to your loved one against the perceived threat. They will welcome your reassuring companionship and accept whatever creative means you employ to neutralize the threat. Step into the hallucination, then guide them out.
If intruders are here, you may want to hide with your loved one in a safe place and, in a convincing manner, reassure him that you will call the sheriff’s department. If bugs are crawling around you may get a spray bottle full of water and, with the help of your loved one, use it to exterminate them. If bombs are falling you may want to retreat to the basement together or crawl under the bed and offer her a hard hat, which could be used for continued comfort even as the bombardment slows down and ceases.
Every hallucination is unique. Be creative. Find your own way of neutralizing the threat, and provide support and reassurance. And as soon as they feel safer, offer them a favorite treat. In this situation, an ice cream cone can be far more effective than most medications.
Although sometimes benign, hallucinations can have serious and real consequences. Therefore, patients should be evaluated for treatment by a specialist. Conventionally, hallucinations are treated with antipsychotic drugs. Given the complexities of dementia and the plethora of dementia-related diseases, make sure the prescribing doctor is indeed a specialist with ample experience in dementia care, preferably a neurologist.
Do not wait too long to seek medical treatment. The sooner treatment strategies are implemented, the better chances of a positive result. Do not wait for a crisis to seek assistance; most treatments require titration (starting with minimal doses and increasing in small increments until optimum dosage is achieved); this cannot be done quickly in an emergency situation. Since dementia-related changes in the brain continue to occur—potentially affecting the appropriateness and efficacy of treatment—medications must also be meticulously re-evaluated on a regular basis.
Some families are reluctant to use medications to help alleviate the psychological symptoms of dementia. Although it is true that there is currently only one drug approved by the FDA for this specific purpose—Brexpiprazole (Rexulti®) - an antipsychotic—experts have identified several medications that are remarkably safe and effective when used properly. The right combination can soothe a mind affected by hallucinations and greatly enhance wellbeing.
Above all, do not underestimate the problem.
A calm, friendly approach from the caregiver and the medical assistance from an expert are essential in keeping hallucinations under control and your loved one safe and comfortable.
Excerpted from Ahead of Dementia, A Real-World, Upfront, Straightforward
Step-by-Step Guide for Family Caregivers