(StatePoint)

Approximately 2.4 million people or 30 percent of people living with dementia in the U.S. may experience hallucinations and delusions associated with dementia-related psychosis. These symptoms might include seeing something that isn’t there or believing something that isn’t true and can be frequent, persistent and recur over time.

According to advocates, improving management of these troubling symptoms starts with recognizing and understanding what patients are experiencing. To learn more, UsAgainstAlzheimer’s, the Lewy Body Dementia Association (LBDA) and Acadia Pharmaceuticals, surveyed patients and their caregivers. Findings highlighted important, infrequently discussed, considerations for caregivers:

  1. Symptoms can happen frequently: The most common symptoms of dementia-related psychosis reported by surveyed patients were visual hallucinations (89 percent), auditory hallucinations (54 percent) and distortion of senses (54 percent) and such symptoms can happen frequently. Of patients who reported recent visual hallucinations, 61 percent indicated they occurred at least weekly. In addition, the majority of care partners (77 percent) reported paranoid delusions as occurring at least weekly.

“Given their potential frequency, being prepared to recognize, report, and manage these symptoms is critical,” says Theresa Frangiosa of UsAgainstAlzheimer’s, one of the survey authors. “My mom experienced these kinds of symptoms associated with her Alzheimer’s disease and in talking with other caregivers, many people think this could never happen to their family until it does.”

  1. Dementia-related hallucinations and delusions greatly impact a patient’s overall health and quality of life: Most surveyed patients said their activities of daily living (75 percent), sleep (63 percent), family life (56 percent), and safety (about 56 percent) were affected by dementia-related hallucinations and delusions. Care partners reported that symptoms make it difficult for their loved ones to know what is real and what is not real, contributing to their anxiety, and impacting their personal relationships.

Jo Anne, 70, from Maryland, was surprised by her husband’s hallucinations. “Before Ed was diagnosed with Lewy body dementia, he would tell me that he saw mice or insects in the house so, of course, I’d go check! When these experiences increased in frequency, I knew that we needed to talk to his doctor about why he was having persistent hallucinations.”

Research shows that these kind of neuropsychiatric symptoms may pose challenges. For example, studies show that presence of psychosis in Alzheimer’s patients was also associated with 1.5 times increased likelihood of death.

  1. Care partners are affected too: Dementia-related hallucinations and delusions are symptoms that can be associated with all forms of dementia such as Lewy body dementia, Alzheimer’s disease, Parkinson’s disease dementia, vascular dementia, and frontotemporal dementia. Unfortunately, caregivers of people with dementia compared to non-caregivers can experience high rates of emotional and physical stress as well as depression, an increased likelihood of comorbid conditions, hospitalizations, and doctor visits. In fact, caregiver burden is associated with increased desire to place people with dementia in long-term care.
  2. Getting help as early as possible is key: Living with dementia-related hallucinations and delusions takes a toll on both patients and caregivers. That’s why advocates urge caregivers to get educated about what to expect from dementia-related psychosis and find support.

“If you see your loved one exhibiting new symptoms, then take the initiative to tell their health care provider, who can offer advice on how to cope,” urges Frangiosa.

For more information, visit usagainstalzheimers.org. UsAgainstAlzheimer’s is an advocacy and research-focused organization pushing for expanding treatments and research for Alzheimer’s disease. Additional education is available from LBDA at www.lbda.org.

While the symptoms of dementia-related psychosis can be hard to recognize at first, reporting symptoms is the first step to finding support.