Patient Experience Data Offers Key Insights for Dementia-Related Psychosis Care

Two study authors provide commentary on data that suggests that offering clinicians more perspective into the individual patient experience can help inform care for those individuals with DRP.

Teresa Brandt, PhD, MCB, executive director, Regulatory Affairs, Acadia Pharmaceuticals

Teresa Brandt, PhD, MCB

Bill Keller, MBA, vice president, Patient Advocacy and Industry Relations, Acadia Pharmaceuticals

Bill Keller, MBA

A recently published survey study suggests that patient experience data can provide insights into the urgent therapeutic needs of those living with dementia-related psychosis (DRP) by informing clinicians of the nature, frequency, and severity of symptoms as well as their effect on individuals' lives.

The online survey was completed by 26 people living with self-reported DRP and 186 care partners who responded on behalf of patients, identified through UsAgainstAlzheimer’s and the Lewy Body Dementia Association. Notably, the data revealed that 53.8% (n = 100) of care partners reported that patients were either “not at all comfortable” or “only a little comfortable” discussing the symptoms of DRP with those closest to them, pointing to the importance of facilitating physician-patient conversations about the individual patient experience.

Additionally, the data show that the majority of respondents noted that the most common symptoms, such as visual hallucinations (patient reports, 88.5%; care partner reports, 75.3%), auditory hallucinations (patient reports, 53.8%; care partner reports, 43.5%), and persecutory delusions (patient reports, 38.5%; care partner reports, 75.8%) have an effect on their activities of daily living, sleep, family life, and safety concerns.

A large portion of respondents (patients reports, 42.3%; care partner reports, 41.9%) reported being on no current treatment, and those who were on treatment reported that current treatment methods were less than moderately helpful in treating patients’ most impactful symptoms. Among those receiving treatment, common therapies included the use of atypical antipsychotics, reported by 26.9% of patient reports and 40.9% of care partner reports. The use of psychological or behavioral therapy was reported by 23.1% of patients and 7.5% of care partners.

To find out more about the insights that can be gleaned from such assessments, NeurologyLive inquired with 2 of the study’s authors: Teresa Brandt, PhD, MCB, executive director, Regulatory Affairs, Acadia Pharmaceuticals; and Bill Keller, MBA, vice president, Patient Advocacy and Industry Relations, Acadia Pharmaceuticals. Notably, Acadia is the developer of a therapy being investigated for use in DRP, pimavanserin (Nuplazid), which is already FDA-approved for the treatment of Parkinson disease psychosis.

NeurologyLive: How essential are these patient-centered data in assessing their needs?

Teresa Brandt, PhD, MCB; and Bill Keller, MBA: Patient-centered data inform patient needs in 3 ways: First, the patient’s perspective regarding specific symptoms isn’t always readily available or easy to discern from interactions with their healthcare providers. This is especially true among patients with dementia, as they aren’t always able to speak or advocate for themselves. Therefore, systematic collection of this data provides a greater understanding about the nature and impact of a specific medical condition and related evolving symptoms.

Second, access to systematically collected, high-quality, patient-centered data help to inform and focus research on potential treatment options. Third, high-quality, validated data also help inform the FDA benefit-risk decision in evaluating new potential treatments in the context of the condition.

What were the findings, ultimately? Were any of them surprising or unexpected in any way?

Our research sought to increase understanding about the impact that hallucinations and delusions have on people living with dementia.

During the qualitative interviews, we learned that hallucinations and delusions associated with dementia caused individuals to doubt their own understanding of reality and the motives and actions of the people around them, resulting in a reluctance to engage in everyday life. Survey respondents described difficulties with the activities of daily living, sleep, family life, safety, and socializing, and their emotional states were often characterized by feelings of anger, frustration, and sadness.

The subsequent survey and quantitative analysis confirmed the results from the qualitative interviews. Patients and their caregivers reported that the most impactful hallucinations and delusions made those living with dementia less confident in going about daily activities, interfered with social engagement, induced worry about the future, made it difficult to understand what is real, or interfered with participation in social activities. Collectively, the impact of hallucinations and delusions, particularly those related to independence and safety, often substantiated a need for 24-hour care partner support for the person with dementia-related psychosis and influenced considerations and concerns regarding future living situations or the need for placement in long-term care facilities.

While the research results were not surprising, they underscore the burden of dementia-related psychosis and emphasize the unmet need for therapies to manage hallucinations and delusions in the context of a poor prognosis of patients with this condition. Notably, although this study focused on patients at different stages in their dementia journey, one unexpected insight was the extent of the burden on caregivers. The role of caregivers is an important area for further research to identify appropriate levels of support.

From a research design and execution perspective, partnering with advocacy groups, including the Lewy Body Dementia Association and UsAgainstAlzheimer’s, was particularly valuable because it improved our ability to reach a wide variety of patients at different stages of their dementia journey.

What are the takeaways for the clinical community? Are there any actionable insights for practicing physicians?

This research showed that hallucinations and delusions caused persons with dementia-related psychosis to question their understanding of reality and decreased their confidence in engaging fully with daily life. The literature shows that the frequency and severity of hallucinations and/or delusions are known to increase over time, and this was affirmed in this qualitative survey. Caregivers reported frequently having to adapt daily routines based on when the hallucinations and/or delusions were causing distress to patients, putting the symptoms in control of how they live.

In addition, qualitative interviews revealed that caregivers prioritize protecting their loved one’s dignity, which may lead them to conceal or ignore the onset of “embarrassing” symptoms. Furthermore, during a quick doctor’s visit, there may be other health priorities that leave little time to discuss symptoms like hallucinations and delusions. This dynamic is further complicated by the fact that that current treatment options do not address the most pressing symptoms of people with dementia-related psychosis, hallucinations, and delusions, and are associated with concerning risks for elderly patients. An ideal therapy would improve symptoms and allow individuals to better distinguish reality from psychotic experiences.

These findings lead to 2 important takeaways for clinicians:

  • There is a great need to educate patients and caregivers about dementia-related psychosis (hallucinations and delusions);
  • 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-related psychosis.

Caregivers would benefit from tools and guidance that help them recognize and report the onset (or uptick in the frequency of) hallucinations and delusions associated with dementia to their loved one’s dementia specialist. Notably, our study also points to a need for a systematic tool for clinicians to use to assess patients with hallucinations.

Finally, clinicians may also benefit from learning about the resources available from advocacy organizations like our research partners, the Lewy Body Dementia Association and UsAgainstAlzheimer’s, who offer support groups, education, and tools to help manage the challenges of living with these symptoms.

What else needs to be done in terms of research into DRP and this patient population?

Ideally, future areas of study will focus in 2 areas:

  • Caregiver impact and communication with regard to symptom management and treatment needs, which may provide further insight into how to improve the lives of persons with dementia-related psychosis and their families.
  • Patient and caregiver experience data specifically focused on Black, Hispanic, and Asian patients with dementia to better understand their experience of dementia-related psychosis.

Transcript edited for clarity.

Brandt T, Frangiosa T, Biggar V, et al. Symptoms and Treatment Needs of People with Dementia-Related Psychosis: A Mixed-Methods Study of the Patient Experience. Clin Gerontol. 2021;1-15. doi:10.1080/07317115.2021.1957050
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