- About 30 to 40 percent of people with Alzheimer’s experience hallucinations and delusions.
- The drug pimavanserin is used to ease delusions in people with Parkinson’s disease, and it performed well in a recent trial with people with Alzheimer’s and other types of dementia.
- If the new use for pimavanserin is approved by the FDA next year, experts say it could be helpful to family members caring for a loved one with Alzheimer’s.
Imagine that your husband has Alzheimer’s and you are his caregiver.
He also mistakenly believes you’re having an affair, people are trying to steal from him, and you’re trying to poison him.
Hard to imagine? Not necessarily.
Experts say that kind of delusional behavior is what a significant number of caregivers face.
“Psychosis poses a great challenge for people with dementia and their caregivers. They may experience hallucinations or false sensory perceptions and delusions, a state of altered reality,” Maria C. Carrillo, PhD, chief science officer for the Alzheimer’s Association, told Healthline. “These symptoms tend to occur more often in the later stages of the disease.”
And experts say it happens more often than you might think.
“About 30 to 40 percent of these patients will have hallucinations and delusions at some time in the course of their illness,” said Jeffrey Cummings, MD, ScD, a leading Alzheimer’s researcher and founding director of the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, Nevada.
Up until now, doctors have had few options for treatment.
Now, researchers say a medication that the Food and Drug Administration (FDA) first approved to treat Parkinson’s psychosis also shows promise in treating people with dementia who have delusions.
It’s called pimavanserin, which was initially approved in 2016. After safety concerns were raised in 2018, it was reviewed by the FDA, and the agency
“That was the first approval for the treatment of any behavioral disturbances in any neurological disease. It’s quite remarkable that that’s still where we are in 2019,” Cummings told Healthline.
Pimavanserin is a once-daily pill with the brand name Nuplazid. It’s manufactured by Acadia Pharmaceuticals Inc.
On its website, the company warns there is an increased risk of death in older adults with dementia-related psychosis and that the drug is only approved for the treatment of Parkinson’s disease psychosis.
In a new study, researchers tested pimavanserin on nearly 400 people with five types of dementia: Parkinson’s disease dementia, Alzheimer’s dementia, vascular dementia, frontotemporal dementia, and dementia with Lewy bodies.
At the start, everybody was given pimavanserin. Those who seemed to respond were split into two groups. Half stayed on the drug while the other half were given placebos.
Cummings, who served as an advisor to the pharmaceutical company, says the trial had a planned interim analysis.
“At that point, it was obvious that patients who had been placed on placebos were relapsing at a much higher rate than patients who had been randomized to pimavanserin,” he said.
The study was then stopped early once researchers determined the results showed the pimavanserin treatment showed significant benefit.
The results were presented last week at the 12th Clinical Trials on Alzheimer’s Disease (CTAD) conference in San Diego.
The study has not yet been published in a scientific journal.
In early 2020, researchers plan to submit their findings to the FDA for approval.
“There is an urgent need for more tools for clinicians to provide better care and treatment for people living with Alzheimer’s and all dementia today, while research continues for a cure,” Carrillo said.
“The Alzheimer’s Association looks forward to learning about the next steps for this drug, including the company’s discussions with the FDA. We encourage a rigorous review and discussion of any potential side effects and safety concerns,” she added.
Cummings says there has not been a new drug approved to treat Alzheimer’s since 2003.
If pimavanserin is approved, it could be a significant for families with loved ones who have Alzheimer’s.
“It would be a very exciting thing. The ability to ameliorate those kinds of symptoms makes a huge difference for caregivers,” he said.
He says the drug potentially could be used to treat other types of dementia.
“By including five types of dementia in the study, we essentially showed that all major types of dementia respond to pimavanserin,” he explained.
Caring for loved ones with dementia and delusions can be stressful and exhausting.
Even if the FDA approves pimavanserin for use in people with dementia, it could be months away from being available.
What are some rules of thumb caregivers should follow? When do you need to reach out to your doctor?
We put those questions to Dr. Verna R. Porter, a neurologist and director of dementia, Alzheimer’s disease, and neurocognitive disorders at Pacific Neuroscience Institute at Providence Saint John’s Health Center in Santa Monica, California.
“You certainly want to call your doctor if this is the first time these hallucinations or delusions have happened,” she told Healthline. “Or if they are happening more often and are starting to last longer.”
Porter said caregivers should look for signs that their loved one is more easily distracted or forgetful, has less energy, and exhibits sudden changes in personality and behavior. They may be strangely emotional, rambling, not making sense when they talk.
“And you should be concerned if you are worried the patient will hurt themselves or others,” she added.