Dementia-related psychosis treatments fail to meet patients’ needs
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Patients with dementia-related psychosis self-reported severe symptoms that were not reduced by current treatments, according to findings published in Clinical Gerontologist.
"Our research sought to increase understanding about the impact that hallucinations and delusions have on people living with dementia, as there is scant medical literature describing this impact," Teresa Brandt, PhD, project director of Clinical and Regulatory Affairs at Acadia Pharmaceuticals in California, told Healio. "The patient’s perspective regarding specific symptoms is not often readily available or easy to discern from interactions with their health care providers, particularly among dementia patients, as they aren’t always able to speak or advocate for themselves. Therefore, systematic collection of this data provides greater understanding about the nature of symptoms and specific impacts on patients and their lived experience (feelings, perceptions and treatment priorities)."
In an observational, noninterventional, prospective study, the researchers received qualitative interview responses from 16 participants, one of whom had DRP, and 15 care partners (mean age, 85.5 years; 66.7% men;). They received quantitative survey responses from 212 participants, of whom 26 had DRP (mean age, 64.6 years; 57.7% men;); 186 care partners (mean age, 78.1 years; 48.9% men) . All participants were from the U.S., 18 years or older and in written and verbal English. Care partners were defined by the researchers as “individuals who provided at least 20 hours per week of direct in-person care for an individual with DRP.”
The qualitative part of the study consisted of a phone interview between researchers and 16 participants to determine the nature, frequency and severity of symptoms, in addition to the impact they have on the individuals’ lives. Using the Hallucination and Delusions domains of the Scale for the Assessment of Positive Symptoms, researchers developed a 1 hour interview, conducted between Oct. 29, 2019, and Dec. 13, 2019.
The quantitative component of the study required 212 participants who were not involved in the qualitative interviews to take an online survey between Nov. 14, 2019, and Jan. 21, 2020. Participants answered 35 close-ended questions regarding medical history; occurrence, severity, frequency, and impact of symptoms; treatments taken; effectiveness of treatments taken; and desired treatment benefits.
Researchers recorded visual hallucinations (93.8%, qualitative group; 53.8% of those with DRP, 52.7% of care partners, quantitative group), auditory hallucinations (68.8% qualitative group; 30% of those with DRP, 29% care partners, quantitative group), persecutory delusions and distortion of senses as the most common symptoms among participants. The most common were difficulty differentiating reality from fiction, increased anxiety and effects on personal relationships.
When asked about treatment methods, participants reported they were “less than moderately helpful,” with a median visual analog scale (VAS) score of 2 out of 5 reported by those with DRP and care partners (VAS range = 0 [“not well at all”] to 5 [“extremely well”]).
"These findings showed that there is a great need to educate patients and caregivers about dementia-related psychosis, specifically hallucinations and delusions," Brandt said. "Additionally, open communication and creating a safe space for both patients and their caregivers to share what is happening to them may help increase understanding that hallucinations and delusions are behavioral symptoms that may occur as a result of dementia."
The clinical implications of this study included how current treatments options did not address symptoms of DRP and that an ideal therapy would improve symptoms so individuals can differ reality from psychotic experiences.
Study limitations included potential recall bias, limited inclusion and limited diversity due to a majority of white participants.