Survey Shows Significant Burden of Visual Hallucinations and Paranoid Delusions for People With Dementia

  • Alzheimer Disease
  • Dementia
  • Hallucinations

A qualitative and quantitative survey explored the impact of dementia-related psychosis on more than 200 participants to better understand the patient-centered experience of symptoms and unmet treatment needs. These data from the survey were presented today in 2 posters during the Alzheimer's Association International Conference (AAIC) virtual event, convening July 27-31, 2020.

Key findings of the quantitative portion noted the most common symptoms of dementia-related psychosis were visual hallucinations, auditory hallucinations, and distortion of senses. Care partners reported paranoid delusions and false beliefs as having the most impact. They shared 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 affect their personal relationships. In the qualitative portion, the majority of participants reported that symptoms such as visual hallucinations, auditory hallucinations, and persecutory delusions affect their activities of daily living, including sleep, family life, and safety concerns.

The survey followed the approach as outlined in the FDA’s 21st Century Cures Act – Patient Focused Drug Development. This observational, noninterventional, 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 individuals 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.

For the 26 individuals with dementia who provided self-reports, the most common symptoms of dementia-related psychosis were visual hallucinations (89%), auditory hallucinations (54%), and distorted senses (54%). Of participants who reported recent visual hallucinations, 61% indicated these occurred at least weekly. Care partners surveyed about their loved ones with dementia-related psychosis (n=186) identified paranoid delusions (76%), visual hallucinations (75%), and lack of trust for loved ones (52%) as the most common symptoms. The majority of care partners (77%) reported paranoid delusions as occurring at least weekly.

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