Background

New treatments for Alzheimer’s Disease, such as anti-amyloid therapies, created hope for people living with early Alzheimer’s disease. However, deciding whether to use these medications is complicated. The drugs can be expensive, require special access and regular monitoring, and may cause serious side effects, including brain swelling or bleeding. These risks mean that patients often need multiple magnetic resonance imaging (MRI) scans and ongoing medical follow-up. Patients, caregivers, and clinicians must weigh medical factors alongside patient factors, such as cost, clinic availability, travel needs, and caregiver support, when deciding on care options.

Right now, there are no easy-to-understand tools that help patients and clinicians discuss these options and compare their potential benefits and risks. As interest in anti-amyloid treatments grows, especially following Lecanemab and Donanemab’s approval in Canada in 2025 and 2026, there is an urgent need for clear, accessible information to support shared-decision making.

In this proposed study, we will co-create a visual decision-aid tool to help patient, caregivers and clinicians explore treatment options. First we will interview patients, caregivers, and clinicians to understand their information needs about treatment options, the timepoint(s) in the care pathway they feel a decision aid would be most helpful, and preferences about how the tool should be introduced in a clinic visit and which healthcare professional should introduce it. We will then co-design and build an interactive visual tool that shows the risks, benefits, and outcomes of different treatment options, including anti-amyloid drugs as well as non-drug approaches. Finally, we will evaluate this tool in real clinical settings to determine whether it improves patients’ understanding of treatment options, supports more informed shared-decision making, and if, and how, it helps patients, caregivers, and clinicians feel more confident in their care decisions.

Roles and Responsibilities

This tool aims to clarify complex medical information, support parents and caregivers during a stressful, decision-making process, and help clinicians provide balanced, evidence-based guidance while reducing unnecessary testing and cost.

We are looking for patient research partners, either Alberta or Ontario based, with lived experience of dementia and/or Alzheimer’s disease, or caregivers to someone living with Alzheimer’s disease, to join a grant funding application. Patient research partners will be asked to review the study objectives to help make them align with patient and caregiver needs, and to provide insights and feedback on study design, participant recruitment and retention strategies, and on the implementation, evaluation, and dissemination of the co-developed tool.
If funded, patient partners would be asked to collaborate on all the above aspects in carrying out the study.

Time commitment

The initial time commitment (grant application review) is online and 2 hours – 1 hour to read and review the study proposal and a one-hour online meeting during the month of August, 2026.
If funded, the study would start April 2027 and continue for about 3.5 years. The anticipated monthly commitment would be a 1 hour online meeting per month with possible additional collaboration opportunities if patient partners are interested and available.

Compensation/Reimbursement

Compensation of $70 in the form of a prepaid gift card is being offered for the grant application phase. If funded, compensation will be offered to align with AbSPORU guidelines here.
This is anticipated to mostly be an online opportunity. Any direct expenses for in-person meetings or study aspects, such a travel or parking, will be reimbursed.

For more information or to apply please connect with

Fateme Rajabiyazdi
fateme.rajabiyazdi@ucalgary.ca