(Editor’s Note: This is the 10th in a series examining and interpreting a commonly used “bill of rights” for dementia patients.)
When you’re new to a complex disease such as Alzheimer’s or another type of dementia, it’s nearly impossible to know what’s right and what’s wrong.
All of our lives, we have put our trust in the medical professionals who examine us and send us on our way with a prescription that fixes everything. But nothing is simple in dementia care, where a person’s behaviors might change on a dime and his or her ability to clearly communicate is impacted by the disease.
In our ignorance to believe there’s a miracle medication for everything, it’s hard to accept that there are no drugs specifically approved by the U.S. Food and Drug Administration (FDA) to treat behavioral symptoms in people with dementia.
Antipsychotics: Not the Answer
Yet medical professionals and nursing home staff continue to use antipsychotics as a way to alleviate behavioral symptoms. The vast majority of research findings state that these behavioral symptoms are typically a result of environmental factors. Dementia care experts recommend modifying these factors, as opposed to masking the behavioral symptoms with an inappropriate medication.
The vast majority of research findings state that these behavioral symptoms are typically a result of environmental factors.
To better understand, we need to define some terms for us non-medical professionals:
- Psychosis is a mental disorder characterized by a disconnection from reality
- Antipsychotics are a class of psychiatric medication primarily used to manage psychosis; in particular schizophrenia and bipolar disorder
- Antipsychotics, along with antidepressants, ADHD drugs, anti-anxiety medications, and mood stabilizers are types of psychotropic drugs
- A psychotropic is a chemical substance that changes brain function and results in alterations in perception, mood, or consciousness
When these medications are prescribed for the behavioral symptoms in dementia patients, they are being used as “off label.”
- Off label use is when a medication is prescribed for something for which it is not approved by the FDA
The Best Friends Dementia Bill of Rights states that the person with dementia has the right to be free from psychotropic medications whenever possible. However, studies continue to say that these drugs are often inappropriately prescribed and used for too long.
The Need for Different Solutions
Using medications instead of addressing and modifying the environmental cause of the behavior almost always results in a decrease in the quality of life for the individual with dementia. Often, the person is sedated and the ability to enjoy their surroundings and loved ones is negatively impacted.
In 2005, the FDA issued a warning that people with dementia who are on antipsychotic medications face an increased risk of sudden death 1.6 to 1.7 times greater than those who take a placebo.
This is why it’s often said that antipsychotics should only be used as a last resort. The Alzheimer’s Society says, “People with dementia have frequently been prescribed antipsychotic drugs as a first resort and it has been estimated that around two-thirds of these prescriptions are inappropriate.”
Some have argued argue that the rates are higher in some countries, such as the United States.
Some Use Is OK
Unfortunately, while there are limited instances when the use of antipsychotics is appropriate, their overuse makes them seem appropriate to untrained family caregivers. These family members, who are under enormous pressure, want a quick remedy to relieve their loved one’s symptoms and return life back to “normal.”
They don’t necessarily understand the need to observe and identify why the behavior is occurring, and that by doing so they can modify the cause, meet their loved one’s need and avoid medication.
Professionals: Lead the Way
Even if they do understand the need, they may not have the knowledge or skills to help. So it’s essential that more medical professionals start leading by example when considering a course of action for treating a behavioral symptom.
Helping educate family members, as well as professionals, on the proper ways to approach this situation is critical to providing better care for our loved ones with dementia.
We need to work together and spread the word to change this gross misunderstanding and inadvertent abuse of people with dementia.
Check out my free guide, Introduction to Alzheimer’s Medications and “Off Label” Prescriptions, to help you better understand the medications used in Alzheimer’s and dementia care.
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