New UsAgainstAlzheimer’s Research Shows What Matters Most to Patients and Caregivers in Drug Treatments

Additional research released at AAIC focuses on dementia-related psychosis

Washington, DC (July 29, 2020) -- UsAgainstAlzheimer’s (UsA2) today released five publications delivering first-of-their kind findings on outcomes from dementia treatments and therapies that matter most to individuals with Alzheimer’s and those who care for them.

The five research posters are being released at the 2020 Alzheimer’s Association International Conference (AAIC). Three posters are presented by UsA2’s Alzheimer’s Disease Patient and Caregiver Engagement (AD PACE) initiative and reflect findings derived from its two-year What Matters Most Study (WMM Study) conducted by RTI-Health Solutions. Two posters report on research into patient and caregiver views on the burden of dementia-related psychosis and current therapies, which was undertaken jointly by UsA2’s A-LIST®, ACADIA Pharmaceuticals, and the Lewy Body Dementia Association (LBDA).

The research represents a critical step forward to meet UsA2’s vision that all aspects of drug development are being made based on an understanding of what is most important to those living with Alzheimer’s disease and other dementias.

“UsAgainstAlzheimer’s wants to assure that the designs of innovative medicines -- and the regulatory and payment decisions regarding them -- take into account what matters most to persons living with the disease and their caregivers,” said George Vradenburg, UsA2’s chairman and co-founder. “It is vital to measure outcomes that are clinically meaningful to the patient, not just what is regarded today as clinically measurable.”

The WMM Study is a scientifically rigorous study to understand what outcomes are most important to patient and caregivers. Patients and caregivers were asked to rank the relative importance of a number of activities, such as the ability to: pay bills on their own, recognize people they have known for a long time, remember appointments, not get lost in familiar places, not put things in obviously wrong places, able to follow a television show or movie; socialize with family or friends, drive and able to live alone.

In the WMM research released today, the outcomes that mattered most for both patients and caregivers were associated with emotional well-being. The five highest-rated outcomes for Alzheimer’s and dementia patients were: Taking medications correctly; not feeling down or depressed; able to stay safe (e.g., remember to turn off appliances or running water, not wandering, not being taken advantage of); using the bathroom alone; and not feeling like a burden to others.

The top-rated outcomes identified by caregivers for their loved ones with Alzheimer’s or dementia were: Taking medications correctly; not feeling down or depressed; not feeling anxious, worried, stressed; feeling like they have a sense of purpose (self-worth); and not being irritable, frustrated, or agitated.

Another key part of the research is how these patient and caregiver preferred outcomes are being measured by clinical outcomes assessments used widely today in clinical trials. A second WMM poster released today reviewed 20 of the most widely-used existing clinical outcome assessments and how these assessments map to outcomes that matter most to patients and caregivers. The third WMM poster covers the importance of care partner input in developing therapies.

Research on Dementia-related Psychosis - Patient and Caregiver Views

Two research posters presented at AAIC (linked here and here) reported the results of a qualitative and quantitative study of people who have a diagnosis of dementia with psychotic symptoms or their care partners by UsA2’s A-LIST, ACADIA Pharmaceuticals, and LBDA on dementia-related psychosis.

These survey results show that many patients with dementia-related psychosis – who have symptoms such as visual hallucinations, auditory hallucinations, and persecutory delusions – are unaware of what’s happening or how to communicate what they are experiencing. This increases stress and anxiety and affects the daily lives of the patients and their caregivers.

About the What Matters Most Research Program

UsA2’s AD PACE initiative is a pre-competitive collaboration that brings together nonprofit entities, people living with Alzheimer’s disease (AD), care partners supporting for those living with AD, academic leaders, healthcare and biopharmaceutical industry, and government advisors to identify and quantify treatment-related needs, preferences, and priorities among individuals representing different stages of the AD continuum and their care partners to inform drug development, regulatory and reimbursement decision-making. AD PACE is funded by the following sponsors: Biogen, Inc.; Boehringer Ingelheim Ltd.; Lundbeck LLC; OTSUKA Pharmaceutical Development & Commercialization, Inc.; Takeda Pharmaceuticals; UsAgainstAlzheimer’s; Home Instead, Inc.; and LEAD Coalition (Leaders Engaged on Alzheimer’s Disease).

UsA2’s A-LIST is an online, research-ready community of more than 8,000 people who self-identified with (or at risk for) Alzheimer’s disease, other dementias, or Mild Cognitive Impairment; current and former care partners; and people concerned about brain health. The A-LIST is conducting the ongoing What Matters Most Insights Survey Series study on issues that are most meaningful to those living with Alzheimer’s, other dementias and caregivers.

About UsAgainstAlzheimer’s

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.