Mom has a new home now, where “chemical constraints” are considered abuse, unless absolutely necessary and only after all other options have failed.
When people with Alzheimer’s disease or related dementia become verbally or even physically abusive, this behavior is called Behavioral and Psychological Symptoms of Dementia, or BPSDs. While these can also include more benign “aberrant motor behavior” like pacing or hand-wringing, apathy, and even unexplainable joy, the negative end of BPSDs are usually distressing for both caregiver and loved one, and can be so negative and disruptive that caregivers will look for a fix, and sometimes turn to drugs. This is especially true when physical lashing out becomes dangerous.
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 for the care recipient.
Studies have found antipsychotics should be considered as a last resort to temper abusive behavior in someone with Alzheimer’s or related dementia, but the drugs still have a role in treatment. Antipsychotics have been prescribed to address symptoms including those listed above and also inappropriate social behaviors, oppressive anxiety, and even physical motions that are repetitive and worrisome, like tremors or hand-kneading.
The most commonly prescribed antipsychotics for dementia behavior are aripiprazole (brand name Ability), olanzapine (Zyprexa), quetiapine (Seroquel) and risperidone (Risperdal). The federal Food and Drug Administration has approved all these drugs for the treatment of mental health problems including schizophrenia, bipolar disorder, and severe depression. The FDA, importantly, has not officially approved these drugs for behaviors in patients with dementia. “These drugs,” the FDA has warned of antipsychotics, “are not approved for the treatment of behavioural 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 behaviours of dementia patients with antipsychotics is appropriate, “with the right precautions and under the right circumstances.”
A last thing to consider is that studies comparing the effects of an antipsychotic to a placebo have found only marginal difference in elderly people with dementia. Only about half of people with dementia who take antipsychotics demonstrate any benefit, and, of those, the benefits may be marginal.
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, however, 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 other avenues have been attempted and, in accordance with a doctor, 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.
This part is important. The side effects of antipsychotics are powerful, particularly in older people who are far-and-away the majority with Alzheimer’s and other dementias. One of the side effects, especially after taking the drugs for more than two weeks, is faster cognitive decline, meaning thinking and memory actually 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 most, if not all, of these: shakiness, involuntary movements of the mouth and jaw, lethargy (sleepiness and slowness), weight gain, constipation, dry mouth, and blurred vision.
Crucially 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 behavior is actually threatening. Caregiver stress can be brutal, and it is possible to become so sensitive to outbursts, particularly if they’re cruel, that pharmaceutical fixes are sought even though that may not be necessary.
The reactions of caregivers due to caregiver stress may be triggering physically aggressive behavior, and therefore the troubling symptoms you think warrant antipsychotics could be entirely avoidable. Along those same lines, be sure to check for environmental stressors, like too much noise; too many people, or frequent visits from disagreeable people; bright lights; or even an uncomfortable temperature or climate in your loved one’s living space. Dementia affects a person’s ability to communicate, so your loved one may be unable to express that something very basic is causing problems.
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 sooth, someone in the throws 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 may actually 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 less 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 does 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 have the effect of reducing stress and increasing 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 employing antipsychotics as a last resort, as stated above, it becomes imperative to ask any memory care residence or nursing home where your loved one is staying whether there are clear guidelines on the usage of antipsychotics, and whether the drugs are considered “chemical constraints.” Usage of antipsychotics in any regular way indicates a bigger problem. The facility may be understaffed, necessitating sedation of residents because staff can’t 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.
Even worse: Reports have found residents were often given these drugs without their knowledge. Because a company may have marketed itself as effective for dementia when it isn’t, and because the sedative effect makes residents easier to care for, and because side effects like the acceleration of cognitive decline are happening internally and thus not apparent by the patients’ actions, staff may be unaware of the harm they’re committing.
Again, there are cases where antipsychotics are appropriate for someone with Alzheimer’s or related dementia, particularly when that person has the potential to cause self-harm. But these cases are rare, and studies say the drugs may not even be effective as 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, but government oversight is not especially strong, and this remains a concern. Numerous organizations, including the American Health Care Association, endorsed a report in 2017 that said diagnoses of late-life schizophrenia (which is very rare) was 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 aren’t being used less, but rather the justifications for giving residents the drugs may have changed.
The government under Donald Trump’s administration has cut oversight and regulation in areas including pharmaceutical administration in nursing homes and memory care facilities, an effort they’ve named “Patients Over Paperwork.” Less oversight is another reason it’s important to know exactly what medications your loved one is taking. You may be the oversight.