New report: Exploring lived experience attitudes and perceptions of disease-modifying therapies

What are disease-modifying therapies?
Disease-modifying therapies are treatments that could change how a disease develops over time. Unlike current medications that focus on managing symptoms, drugs like lecanemab address the underlying cause of Alzheimer’s disease by removing harmful amyloid plaques from the brain.

In late October 2025, Health Canada announced conditional approval of the disease-modifying therapy (DMT), lecanemab. While not a cure, and only for people in the early stages of Alzheimer’s disease (i.e., mild cognitive impairment or mild dementia due to Alzheimer’s disease), this decision represents an important advancement in how we approach treatment and care. However, we don’t know much about how people affected by dementia feel about these treatments.

Between October 2024 and April 2025, our team hosted seven virtual focus groups with people affected by dementia to learn about their attitudes and perceptions of DMTs. We gratefully acknowledge the insights of the 21 care partners and 12 people living with dementia who contributed to this project. The discussions highlighted four key themes.

Concerns about equitable access

Participants identified both personal and health-system barriers that could create inequities across the province, especially in rural and remote areas. Beyond financial barriers, care partner support was identified as essential for treatment access, transporting to appointments, monitoring side effects and supporting the overall treatment process.

Family-centred decision-making
Weighing the risks and benefits often reflected personal circumstances, stage of disease and tolerance for serious side effects like brain bleeds or swelling. Participants living with dementia were generally more cautious, emphasizing potential impacts on quality of life and fear of severe complications. Across all focus groups, participants agreed that decisions about DMTs would be shared, with families managing risks together.

The Alzheimer Society of BC and Yukon as a trusted guide and advocate
Participants consistently identified the organization as a trusted and reliable source of information to help navigate their dementia experience, including emerging treatments like DMTs.

Therapies as a source of hope and progress
Many described DMTs as an opportunity to regain a sense of agency in the face of a difficult diagnosis. For care partners, they offered a sense of optimism about the possibility of gaining more time with their family member. The promise of innovation provided reassurance, but the potentially lengthier timeline for drug approval processes in Canada left some feeling discouraged.

Findings underscore the need for a clear step-by-step roadmap for the entire progression of the disease. This will allow families to make informed choices and equitably access the benefits of new therapies.