Albertans4HealthResearch.ca

Visual Decision Aid Tool for Anti-Amyloid Therapies in Early Alzheimer’s Disease
University of Calgary

Background
New medications for early Alzheimer’s disease are now available in Canada. These drugs offer hope, but they also come with important trade-offs. They may slow disease progression for some people, but they can also cause serious side effects, require frequent hospital visits for infusions, regular MRI scans, and may not be equally accessible to everyone. Because of this, deciding whether to start these treatments can be difficult and stressful for patients, families, and doctors.
Right now, information about these medications is often presented using complex statistics and medical language. This can make it hard to understand the real risks and benefits, compare options, and decide what matters most for you and your family. As a result, clinic visits may feel rushed or confusing, and some people may make decisions that do not fully reflect their values or preferences. Our project aims to create a visual decision-support tool. The goal is to support meaningful conversations during clinic visits so patients, caregivers, and physicians can make decisions together.
This work is important because more Canadians are now being offered these new therapies, and families need better support to make informed, personalized choices. The project will help:
     -Patients, by making complex medical information clearer and easier to understand
     -Caregivers and families, by helping them weigh options and participate confidently in              discussions.
     -Physicians, by supporting more efficient and focused conversations.
     -The healthcare system, by reducing confusion, unnecessary repeat visits, and decision          regret.
We will test the tool in real clinical settings and compare it to usual clinic discussions to see whether it improves understanding, confidence, and shared decision-making. The results will help guide how similar decision tools could be used across Canada.
Patient partners are essential to this work. Your lived experience will help ensure the tool reflects real concerns, real questions, and what truly matters to families facing these decisions.

Roles and Responsibilities
We are looking for patient partners based in Alberta and Ontario who have lived experience of Alzheimer’s disease or who are caregivers to a family member or friend who is living with Alzheimer’s disease. This initial opportunity is to join a grant funding application and to provide essential lived experience insights to the patient engagement opportunities and aspects of the study design.
If funded, patient partners will be offered opportunity to collaborate on various aspects of the research study such as more inclusive participant recruitment and engagement, qualitative data collection (co-design of focus groups/interview guides and facilitation) and analysis, co-design of the visual support tool and evaluation of the implementation.

Time Commitment
This is anticipated to be a three-year study. The initial opportunity to join the grant funding application will start right away. We expect to meet virtually for approximately one-hour in February 2026. Patient partners will be asked to review the study proposal and offer feedback on where patients can be involved. This initial total engagement opportunity is expected to take 4-5 hours.

Compensation/Reimbursement
This is an online opportunity that will be completed via Teams or Zoom. Patient partners will be offered compensation for their time as per AbSPORU Patient Partner Compensation Guidelines.

For more information or to express interest, please connect with
Fateme Rajabiyazdi
frajabiy@ucalgary.ca