When people with Alzheimer’s disease or another dementia become verbally or physically abusive this behavior is labeled Behavioral and Psychological Symptoms of Dementia (or BPSD). While these can also include more benign “aberrant motor behavior” like pacing or hand-wringing, apathy, and even unexplainable joy. The behavioral and psychological symptoms of dementia are distressing for both the caregiver and the loved one. When behavior becomes dangerous, disruptive, and negative caregivers will begin to look for a solution. When non-pharmaceutical options do not work, it can be time to look at different potential medications available. This is especially true when physical lashing out becomes a matter of safety for your loved one and those around them.
Caregiver stress is a particular worry when behaviors become problematic. Supporting a loved one with Alzheimer’s or dementia can be extremely difficult even when the person with the disease is calm. Add verbal abuse or physical resistance and caregiver stress can become overwhelming. This makes pharmacological solutions appealing, but caregivers should consider several factors before turning toward antipsychotics.
Studies have found antipsychotics should be considered as a last resort to temper abusive behavior in someone with Alzheimer’s or related dementia. Antipsychotics have been prescribed to address symptoms of physical abuse, verbal abuse, inappropriate social behaviors, oppressive anxiety, and even repetitive physical motions like tremors or hand-kneading.
As of May 2023, the FDA approved the first prescription medicine to treat the aggression symptoms associated with Alzheimer’s disease. Rexulti (also sold under the generic name brexpiprazole) was originally approved to treat depression and schizophrenia in 2012. While other medications have been prescribed to help aid with symptoms, this is a breakthrough because it is the only approved antipsychotic for dementia patients. In clinical trials that were fast-tracked for FDA approval, dementia patients show improvement in their symptoms of agitation. That was done by testing patients using the Cohen-Mansfield Agitation Inventory, which is a question-and-answer test examining your loved one’s behavior. In Rexulti’s third clinical trial, out of 345 patients who took the medicine or a placebo, those who took the drug scored 5 points more on the exam after 3 months of taking it. With as many benefits as this newly approved drug can bring, it is important to remember that all medications have side effects and dementia patients can be especially sensitive to them. The largest side effect of Rexulti is that patients have an increased mortality rate. This is normal in all antipsychotic medications and according to the FDA, it falls within a “normal” range. For some patients, Rexulti’s benefits outweigh the risks and their severe agitation and behavior problems can decrease causing a positive benefit to their quality of life.
There are other prescribed antipsychotics for dementia behavior. These are not FDA-approved to be used by dementia patients. They are aripiprazole (brand name Ability), olanzapine (Zyprexa), quetiapine (Seroquel), and risperidone (Risperdal). The Food and Drug Administration has approved all these drugs for the treatment of mental health problems including schizophrenia, bipolar disorder, and severe depression. “These drugs,” the FDA has warned of antipsychotics, “are not approved for the treatment of behavioral symptoms in elderly patients with dementia.” The reasons for this warning are further explained below.
After the FDA issued its warning, first in 2005 and again in subsequent years, the number of prescriptions of these drugs for symptoms of dementia decreased, but many doctors still say antipsychotics are appropriate in extreme cases. The American Psychiatric Association responded to the FDA’s warning by stating publicly that there are times when treating the risky behaviors of dementia patients with antipsychotics is appropriate, “with the right precautions and under the right circumstances.”
Studies comparing the effects of an antipsychotic to placebo have found only marginal differences in elderly people with dementia. Only about half of people with dementia who take antipsychotics demonstrate any benefit.
Antipsychotics, including those listed above, still have a role to play in treating people with Alzheimer’s and related dementia. They should not be used unless the person exhibiting extreme behaviors has failed to respond to non-drug management strategies. For more on those strategies, see below.
If your loved one is exhibiting behaviors that are dangerous and they are not responding to non-drug strategies, it is time to consult your loved one’s doctor. Under their guidance, explore all possibilities and benefits, and side effects. Once you have decided to go ahead with antipsychotic medication, there are strategies for safely administering the drugs.
Use the lowest possible doses for the shortest amount of time to decrease risk from side effects (more on side effects below). Halving a pill, for instance, will make the drug less risky and it still may have some effect. Caregivers are advised to start with the lowest possible dose and then monitor behavior. If troubling symptoms persist, then you can slightly up the dosage. Repeat this pattern consistently to find the right balance between effectiveness and side effects.
The side effects of antipsychotics are powerful, particularly in older people who are far and away the majority with Alzheimer’s or another dementia. One of the side effects, especially after taking the drugs for more than two weeks, is faster cognitive decline, meaning thinking and memory worsen.
Any prescription should include a pamphlet that lists the side effects. They vary depending on which specific medicine the doctor recommends, but will probably include: shakiness, involuntary movements of the mouth and jaw, lethargy (sleepiness and slowness), weight gain, constipation, dry mouth, and blurred vision.
Especially for people with Alzheimer’s or related dementia, studies have found an increased likelihood of femur fractures. The combined side effects of sedation and shakiness mean an elderly person on antipsychotics can be prone to falling, and a bad fall can break the bone above the knee.
The potential for blood clots and stroke increases when a person is taking antipsychotics, and mortality rates on these drugs are increased almost double for users over 65.
Physically abusive behavior can be dangerous, but verbally abusive behavior is probably not an actual threat to anyone’s well-being. This is an important distinction. The side effects of antipsychotics can be so strong, and the benefit so marginal, that a caregiver should consider whether problematic behaviorally is threatening. Caregiver stress can be brutal, and it is possible to become so sensitive to outbursts. This can be particularly true if they are cruel and pharmaceutical fixes can be helpful but not necessary.
The reactions of caregivers due to caregiver stress may trigger physically aggressive behavior. Potentially, the troubling symptoms you think warrant antipsychotics could be entirely avoidable. Besides a stress reaction, check for other environmental stressors like too much noise, too many people, frequent visits from disagreeable people, bright lights, or uncomfortable temperatures in your loved one’s living space. Dementia affects a person’s ability to communicate, so your loved one may be unable to express a fundamental problem that causes them irritation.
Before turning to antipsychotics, try these non-pharmaceutical strategies:
Music therapy. Music can be almost like medicine in helping someone fight symptoms of dementia. Studies show music registers in a part of our brains that remains untouched by the disease, so hearing a familiar song or singing along with a loved one can distract, and even soothe, someone in the throes of dementia. More on music therapy.
Aroma therapy. There is increasing evidence that smells from essential oils can effectively treat anxiety and sleeping issues for people with dementia, and only slow the loss of memory. Lavender, peppermint, rosemary, and many other smells have been demonstrated to elevate mood and, like music, distract a person from lashing out.
Pet therapy. Also known as “animal-assisted therapy,” pet therapy is proving effective enough that nursing homes and memory care facilities are increasingly pairing patients with furry friends. Pets counteract boredom and loneliness, and studies have shown that after spending time with a dog or cat, patients with dementia exhibit fewer instances of agitation and aggression.
Family videos. Recorded messages from family members are often effective for calming and soothing people with dementia. Even someone who typically struggles with memory will see an uptick in mood when seeing a familiar face. Real-time video is becoming increasingly easy to offer remotely with devices such as Amazon Echo Show or apps like Facetime and Skype and is likely to have a similar impact.
Cannabidiol (CBD). CBD is a compound derived from cannabis (marijuana) plants that do not produce the “high” effect typically associated with marijuana. Studies have demonstrated long-term benefits, including decreased inflammation in the brain, and in the short term, it may reduce stress and increase alertness. More on CBD for dementia.
Assisted living and memory care residences have been caught using antipsychotics to manage residents’ behavior. This practice is called “chemical constraints,” and has resulted in massive penalties for drug manufacturers. The manufacturers of Zyprexa, for instance, had to pay more than $1.4 billion after settling with the government over accusations they marketed the drug to nursing homes as a treatment for dementia. In 2017, Human Rights Watch released a report titled “They Want Docile.” It began: “In an average week, nursing facilities in the United States administer antipsychotic drugs to over 179,000 people who do not have diagnoses for which the drugs are approved.” They determined it was the sedative effect, rather than any medical benefit, motivating the use of antipsychotics. “Antipsychotic drugs are used sometimes almost by default, for the convenience of the facility, including to control people who are difficult to manage.”
Given the importance of using antipsychotics as a last resort, it becomes one of the first questions to ask any memory care residence or nursing home. It is important to understand their guidelines on the usage of antipsychotics, and whether the drugs are considered “chemical constraints.” Knowing how they implement strategies that do not use medication is important. A facility has the goal to provide a safe and healthy space through modifications to the living environment, adding behavioral therapies, and providing individualized care. Checking that these strategies are used first is important. Medication can not be what the facility relies on to manage behavior. The commonplace usage of antipsychotics indicates a bigger problem. The facility may be understaffed and need patients to be sedated because staff can not provide the attention they need or it may indicate the staff is not adequately trained in managing dementia-related behavior. Ask about staff-to-resident ratios and dementia training the staff receives.
Some disturbing reports have found residents were given these drugs without their knowledge. That is because a company may have marketed itself as effective for dementia when it is not and the sedative effect makes residents easier to care for so staff may be unaware of the harm they are committing. Side effects like the acceleration of cognitive decline are happening internally and are not noticeable by the patient’s actions.
There are cases where antipsychotics are appropriate for someone with Alzheimer’s or another dementia. This is particularly true when that person has the potential to cause self-harm. These cases are rare, and studies say the drugs may not even be effective as a treatment for behavioral and psychological symptoms of dementia.
Reports indicate the use of antipsychotics in elder-care facilities (assisted living, nursing homes, and memory care communities) has gone down in recent years, with stories of abuse bringing light to the issue. It is still troubling because government oversight is not strong. Numerous organizations, including the American Health Care Association, endorsed a report in 2017 that said diagnoses of late-life schizophrenia (which is very rare) were possibly occurring more often “to justify the use of medications and other treatments.” For this reason, it is possible that antipsychotics in elder-care facilities are not being used less, but rather the justifications for giving residents the drugs may have changed.
The government continually cuts the budgets for oversight and regulation, including pharmaceutical administration in nursing homes and memory care facilities. Less oversight is an important reason to know exactly what medications your loved one is taking because you may need to be the oversight.