Dementia-related Psychosis Symptoms and Impact From the Patient and Care Partner (Caregiver) Perspective: an Observational, Prospective Study to Describe the Patient Experience

This observational, noninterventional, prospective study described the person-centered experience of symptoms and impact of dementia-related psychosis (DRP) on patients from a patient and care partner (CP) perspective.

Qualitative interviews were conducted with persons or their CP who have a clinical diagnosis of dementia with psychotic symptoms. A quantitative online survey was completed by persons with self-reported DRP or their CP.

Sixteen individuals (1 patient, 15 CP) participated in the qualitative interview. The most commonly reported symptoms were visual (88%) and auditory (69%) hallucinations and persecutory delusions (56%). Seventy-five percent of participants reported an impact of DRP on activities of daily living.

The quantitative portion was completed by 212 participants (26 patients, 186 CP). Symptoms most frequently reported by patients were visual (89%) and auditory (54%) hallucinations and distortion of senses (54%); CP reported paranoid delusions (76%), visual hallucinations (75%), and lack of trust for loved ones (52%) most frequently. Patients reported visual hallucinations as the most impactful symptom, whereas CP reported paranoid delusions/false beliefs as most impactful to patients, followed by visual hallucinations. Difficulty differentiating what is real from what is not real, increased anxiety, and effects on personal relationships were the most common types of impacts reported by both patients and CP. Many patients (>40%) were not receiving medications for DRP.

Persons with DRP experience hallucinations and delusions that have a substantial impact on their lives. These patient experience data demonstrate that there is a need for treatments to reduce the symptoms and impacts of DRP.