In May 2011, the Office of the Inspector General published a report titled Medicare Atypical Antipsychotic Drug Claims for Elderly Nursing Home Residents.
The report was based on information that was collected from January through June 2007. It stated that:
- 14 percent of elderly nursing home residents had Medicare claims for atypical antipsychotic drugs;
- 83 percent of Medicare claims for atypical antipsychotic drugs for elderly nursing home residents were associated with off-label conditions;
- 88 percent were associated with the condition specified in the FDA boxed warning.
(In the United States, the Food and Drug Administration [FDA] approves medications for specific uses. If a medication is prescribed for any use other than the approved uses, this is considered an "off-label" use. A box warning means that medical studies indicate that the drug carries a significant risk of serious or even life-threatening adverse effects.)
There is certainly much debate about the use of these medications for persons with dementia. These medications are prescribed to treat agitation and symptoms of psychosis in persons with dementia who are living in all settings, including long-term care facilities, assisted living facilities, and at home with a caregiver. Agitation can be dangerous and upsetting for the person with dementia and the caregiver/family. However, the use of antipsychotic drugs in persons with dementia can have serious adverse effects, and may only mask the problem instead of alleviating it.
The Behavior Is Likely a Form of Communication
Agitation is a common problem seen in persons with dementia, as are actions that appear delusional. The first step to lessen the problem is to discover and treat the cause for the psychotic symptoms. There is often a simple explanation for these changes.
Persons with dementia lose the ability to communicate verbally as the disease progresses. However, the individual continues to communicate by relying on other forms of communication, such as facial expressions, gestures, body language, and negative behaviors. These behaviors are often the expression of fear, frustration, pain, or just an inability to express an unmet need. For example, the person may not be able to verbally communicate discomfort related to constipation, headache, or a mild infection.
The following are some common communications that are expressed through behaviors:
- Persons with dementia misinterpret their environment. They may hear someone talking on TV and not realize that the voice is coming from the TV, so they may respond to the person. If the voice is angry, the person may respond angrily. This may appear delusional, but the cause is a misinterpretation of the environment.
- If the environment is noisy, chaotic, or overstimulating, the person may express fear by becoming agitated and anxious.
- Persons with dementia need reassurance because they do not always recognize their environment. The person often reverts to memories of a childhood home, where the person felt safe, comfortable, and loved, and the person may start to physically seek that environment. During these moments, the person with dementia may not recognize the current environment as a place in which they have been living, and they may become agitated and attempt to leave. This disorientation is a result of their ability to use their strong long-term memory to remember and seek a place (and feeling) of safety.
- Persons with dementia often appear egocentric, to the point that they may become upset or irritable if someone else is in their room or sitting in their chair. This egocentricity is the person’s best ability. The person has lost the ability to consider other people's needs, and is focused on self-protection.
- Persons with dementia continue to have the basic need for a sense of productivity and purpose. They may have lost the ability to sequence themselves through a familiar task, but they still have the need to be engaged in valued activities. If boredom sets in, the person with dementia may express this through irritability and/or agitation.
- Persons with dementia continue to have a need for relationships, even when their best ability is to respond to meaningful stimulation. They continue to have the basic need for love and interaction. Isolation and/or lack of stimulation can easily lead to agitation and depression.
These are just some of the reasons that a person with dementia may present with agitation. There is a cause—a trigger—that needs to be remedied or satisfied.
Once the person becomes agitated, it is often difficult to defuse the situation. Defusing the situation takes time, the right environment, and the right approach from the caregiver. However, if there is a concerted effort to discover the trigger for the agitation, then this agitation may be prevented in the future. It is about discovering the trigger and being proactive, not reactive.
The Alzheimer’s Association’s Position on Non-Pharmacologic Approaches to Psychotic Symptoms
The Alzheimer’s Association has published a helpful position paper on behavioral and psychotic symptoms of dementia (BPSD) including non-pharmacologic care alternatives. Reprinted (with permission from the Alzheimer’s Association) from the white paper [PDF]:
Non-pharmacologic approaches should be tried as a first-line alternative to pharmacologic therapy for the treatment of BPSD. Such therapies could include validation therapy and aromatherapies.
Restraint therapies should be avoided in treatment of BPSD. This includes physical or mechanical devices which confine or restrict the physical activity of individuals with dementia and should be used only in extreme situations in order to protect the person and/or others from harm. This can include railings on beds, belts on chairs, wheelchair trays, wrist and waist restraints, vest restraints or tied sheets and long-term antipsychotics. The use of restraints is highly correlated with falls, incontinence, and pressure ulcerations. In addition, restraints contribute to emotional distress including an assault on personal integrity and freedom of movement.
Use of locks on doors to secure safe areas or other deterrents such as disguising doors or door knobs can be helpful in maintaining safety but should not be used to lock persons in a space by themselves.
The Association recommends training and education for both professional and family caregivers on psychosocial interventions that might include:
- Routine activity.
- Separate the person from what seems to be upsetting them.
- Assess for the presence of pain, constipation, or other physical problem.
- Review medications, especially new medications.
- Travel with them to where they are in time.
- Don’t disagree; respect the person’s thoughts even if incorrect.
- Physical interaction: maintain eye contact, get to their height level, and allow space.
- Speak slowly and calmly in a normal tone of voice. The person may not understand the words spoken, but they may pick up the tone of the voice behind the words and respond to that.
- Avoid finger-pointing, scolding, or threatening.
- Redirect the person to participate in an enjoyable activity or offer comfort food they may recognize and like.
- If you appear to be the cause of the problem, leave the room for a while.
- Validate that the person seems to be upset over something. Reassure the person that you want to help and that you love them.
- Avoid asking the person to do what appears to trigger an agitated or aggressive response.
In making the decision to utilize antipsychotic therapy the following should be considered:
- Identify and remove triggers for BPSD: pain, under/over stimulation, disruption of routine, infection, change in caregiver, etc.
- Initiate non-pharmacologic alternatives as first-line therapy for control of behaviors.
- Assess severity and consequences of BPSD. Less severe behaviors with limited consequences of harm to individual or caregiver are appropriate for non-pharmacologic therapy, not antipsychotic therapy. However, more severe or “high risk” behaviors such as frightening hallucinations, delusions, or hitting may require addition of antipsychotic trial.
- Determine overall risk to self or others of BPSD, and discuss with doctor the risks and benefits with and without antipsychotics. Some behaviors may be so frequent and escalating that they result in harm to the person with dementia and caregiver that will in essence limit the life expectancy and/or quality of life of the person with Alzheimer’s.
- Accept that this is a short-term intervention that must be regularly re-evaluated with your health care professional for appropriate time of cessation.
(Alzheimer’s Association National Board of Directors, approved September 2011)
In order to prevent/minimize negative behaviors, we need to understand the communication of the person with dementia, and listen. Often, considerable observation is required to understand the meaning of the behaviors. Possible medical problems need to be considered. And it is helpful to look for and record any patterns of behavior. For example, when the person presents with agitation, consider who is present, where and when the agitation occurs, and what your thoughts are about why the agitation is occurring. This will lead to a systematic way of determining the probable cause.
A non-pharmacological approach should be the first step in treating the psychotic symptom. If we can discover the trigger, then we can address the problem or need and prevent further agitation. With a proactive approach, it is likely that the use of antipsychotic medications will be reduced.