Family Caregivers Want Approved Treatments for Loved Ones' Hallucinations and Delusions
It’s shocking, confusing, and upsetting when “dad starts to rant and rave” or when mom “talks to people who aren’t there.” Millions of Americans suffer from hallucinations and delusions associated with Alzheimer’s and other brain diseases. Caregivers share their burden. Symptoms like hallucinations and delusions make a caregiver’s already stressful situation even more challenging.Could an FDA-approved treatment provide relief for family caregivers and their loved ones?
Caregivers can learn more– and find tips for how to care for their loved ones experiencing these symptoms here.
Statement from John Schall
I am John Schall, Chief Executive Officer of Caregiver Action Network (CAN). Caregiver Action Network is the nation’s leading non-profit family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.
On behalf of the millions of family caregivers whose loved ones suffer from dementia, I am speaking in support of the supplemental new drug applications for NUPLAZID (pimavanserin) tablets, submitted by Acadia Pharmaceuticals Inc., for the proposed treatment of hallucinations and delusions associated with Alzheimer's disease psychosis. If approved, the drug would be the first therapy indicated for the treatment of hallucinations and delusions associated with Alzheimer’s-related psychosis.
Alzheimer’s-related psychosis takes a huge toll not only on our loved ones but on us as family caregivers as well. There are 17 million family caregivers of over 6 million loved ones with Alzheimer’s in the United States. Family caregivers provided 15 billion hours of unpaid care in 2020 – valued at $257 billion – to people living with Alzheimer’s and other dementias. Family caregivers suffer higher levels of depression, face disruptions in their jobs and careers, and sacrifice financially and emotionally for their loved ones.
Millions of people in the U.S. experience dementia-related psychosis. And Alzheimer’s disease psychosis almost always leads to some neuropsychiatric symptoms such as hallucinations, delusions, and changes in behavior.
A recent survey of family caregivers of loved ones with dementia-related psychosis identified paranoid delusions, visual hallucinations, and lack of trust for loved ones as common symptoms. Our loved ones suffering from these symptoms often see or hear things that others do not (hallucinations) or have false beliefs (delusions). For example, someone’s mother might have a false belief that that her son or daughter is stealing her personal items and be verbally and physically aggressive towards them – entirely due to this delusion. In fact, more than three-quarters of family caregivers reported paranoid delusions as occurring at least weekly. So, hallucinations and delusions are much more common than many people realize – and that is with only about half of those suffering from hallucinations and delusions even getting diagnosed at all.
There has never been an FDA-approved treatment option for hallucinations and delusions associated with Alzheimer’s disease psychosis and we need one desperately. Right now, with the lack of a good available therapy, the off-label use of anti-psychotics is sometimes prescribed. But these anti-psychotics often pose safety risks and are associated with increased mortality and increased hospital admissions. In addition, they can worsen both the cognitive decline and the motor function of certain people living with dementia. This puts us as family caregivers in a no-win situation: having to make hard choices between doing nothing or treating our loved ones’ debilitating hallucinations and delusions with anti-psychotics and creating even greater cognitive loss.
Hallucinations and delusions don’t just go away. They are persistent and they can progress as the dementia advances. And the problems these symptoms present are real and significant. Our loved ones suffering from hallucinations and delusions have an increased risk of recurrent hospitalization. Hallucinations and delusions can lead our loved ones to take actions that could be harmful to themselves or their families. Hallucinations and delusions can severely affect the ability of us as family caregivers to care for our loved ones at home. In fact, these challenges are a leading reason why many family caregivers to decide they need to place their loved ones in institutional care settings.
For us as family caregivers, the consequences are serious. Family caregivers have to take their loved ones in for repeated hospital visits. The symptoms of dementia-related psychosis increase the likelihood that they will feel they need to move their loved one to a nursing home. To finally have a therapy available to treat hallucinations and delusions, we as family caregivers will be better able to care for our loved ones and keep them at home longer.
Trial results for NUPLAZID are very encouraging. Finally having a treatment that addresses hallucinations and delusions associated with Alzheimer’s-related psychosis will at last give hope to us as family caregivers that these very serious symptoms can be addressed in an effective manner. Indeed, the very fact that there is a treatment available may make doctors less reluctant to diagnose Alzheimer’s-related psychosis and get treatment to our loved ones sooner.
For these reasons, we strongly support the approval of NUPLAZID for hallucinations and delusions associated with Alzheimer’s-related psychosis.
Thank you.