People with Dementia and Caregivers Share the Significant Burden of Visual Hallucinations and Paranoid Delusions, New Survey Highlights
- Key findings presented at AAIC 2020 include: a need to improve patients’ symptoms and ability to know what is real versus what is not real
- When asked to rank the impact on their own life, patients reported that visual hallucinations were the most impactful symptom
- Care partners reported paranoid delusions/false beliefs as most impactful
WASHINGTON & ATLANTA & SAN DIEGO, July 29, 2020 - UsAgainstAlzheimer’s, the Lewy Body Dementia Association and ACADIA Pharmaceuticals Inc. (Nasdaq: ACAD) today announced the results of a qualitative and quantitative survey that explored the impact of dementia-related psychosis on more than 200 patients to better understand the patient-centered experience of symptoms and unmet treatment needs. Both patients and caregivers responded to the survey. These data were presented today in two posters during the Alzheimer's Association International Conference® (AAIC) virtual event, convening July 27-31, 2020.
Key findings of the quantitative portion of the survey noted the most common symptoms of dementia-related psychosis reported by patients were visual hallucinations, auditory hallucinations, and distortion of senses. Care partners reported paranoid delusions/false beliefs as most impactful and that the symptoms of dementia-related psychosis make it difficult for their loved ones to know what is real and what is not real, increase anxiety, and impact their personal relationships. During the qualitative survey, the majority of participants reported that symptoms such as visual hallucinations, auditory hallucinations, and persecutory delusions have an impact on activities of daily living, sleep, family life, and safety concerns.
“The symptoms of dementia-related psychosis can cause fear and anxiety, disrupting the lives of people living with dementia and their families,” said Virginia Biggar, Senior Director of Communities, UsAgainstAlzheimer’s. “The survey results show that many patients with dementia-related psychosis are unaware of what’s happening or how to communicate what they are experiencing. The findings highlight the need for caregivers and healthcare providers to be able to better recognize, report, and manage these symptoms,” added Terry Frangiosa, Lead Investigator, UsAgainstAlzheimer’s A-LIST Insight Series.
“There is an immense need to find better treatment and management strategies for hallucinations and delusions as a way to improve the lives of those living with dementia,” said Angela Taylor, Senior Director of Research and Advocacy, Lewy Body Dementia Association. “We look forward to continuing efforts with ACADIA and our partner organizations on this project to increase awareness of neuropsychiatric symptoms of dementia in order to drive more comprehensive care and alleviate the distress these symptoms bring to those with dementia, their families and caregivers.”
“The data shows people with dementia-related psychosis experience hallucinations and delusions that have a substantial burden on their lives,” said Teresa Brandt, Executive Director of Regulatory Affairs, ACADIA Pharmaceuticals. “We are pleased to be a part of this patient-focused study as it is critical for the treatment triad of patients, caregivers and healthcare providers to better identify and understand these symptoms, and to incorporate the patient’s voice in drug development and evaluation.”
The survey followed the approach as outlined in the FDA’s 21st Century Cures Act – Patient Focused Drug Development. This observational, non-interventional, prospective study analyzed interviews with persons or their care partners who have a clinical diagnosis of all-cause dementia with psychotic symptoms. The online survey was completed by 26 people living with self-reported dementia-related psychosis and 186 care partners who responded on behalf of patients, identified through UsAgainstAlzheimer’s and the Lewy Body Dementia Association.
Survey results included the following key findings:
- Most common symptoms of dementia-related psychosis reported by patients (n=26) were visual hallucinations (89 percent), auditory hallucinations (54 percent), and distortion of senses (54 percent).
- Of patients who reported recent visual hallucinations, 61 percent indicated they occurred at least weekly.
- Care partners surveyed about their loved ones with dementia-related psychosis (n=186) identified paranoid delusions (76 percent), visual hallucinations (75 percent), and lack of trust for loved ones (52 percent) as the most common symptoms.
- The majority of care partners (77 percent) reported paranoid delusions as occurring at least weekly.
Full survey results are available here.
UsAgainstAlzheimer’s (UsA2) is a disruptive advocacy and research-focused organization that is pushing for expanding treatments and accelerating towards a cure for Alzheimer’s disease. UsA2’s transformative programming is laser-focused on proactive brain health across the lifespan and understanding what matters most across the lived experiences of those affected by Alzheimer’s in the service of preventing, treating and curing this disease. We are working to ensure that all communities have their voices heard and get a chance to be brain healthy from the earliest years while building resistance against possible cognitive decline.
About the Lewy Body Dementia Association
The Lewy Body Dementia Association (LBDA) is the nation’s leading authority on Lewy body dementias (LBD) and is dedicated to continuous outreach, education, research, and support for those affected with LBD and their families. LBD is a progressive brain disease that affects thinking, movement, behavior, and impacts 1.4 million people in the United States.
About ACADIA Pharmaceuticals
ACADIA is a biopharmaceutical company focused on the development and commercialization of innovative medicines to address unmet medical needs in central nervous system disorders. ACADIA has developed and commercialized the first and only medicine approved for the treatment of hallucinations and delusions associated with Parkinson’s disease psychosis. ACADIA also has ongoing clinical development efforts in additional areas with significant unmet need, including dementia-related psychosis, schizophrenia-negative symptoms, Rett syndrome, and an early-stage muscarinic receptor program. This press release and further information about ACADIA can be found at: www.acadia-pharm.com.
Lewy Body Dementia Association
ACADIA Pharmaceuticals Inc.