Exploring Diagnostic and Post-Diagnostic Care Experiences among People Living with Dementia and Care Partners in Canada: A Qualitative Study

Background

Receiving a dementia diagnosis is a complex experience that can provide clarity about symptoms but often creates uncertainty. Support during and after diagnosis is essential to help individuals navigate living with dementia. This qualitative descriptive study examined experiences during and after diagnosis among people with dementia and care partners in New Brunswick, Ontario, and Quebec.

Methods

Interviews with 5 people with dementia and 15 care partners were conducted and then analysed using qualitative content analysis to identify barriers, facilitators, and contextual influences related to a positive experience.

Results

Barriers included limited resources, poorly coordinated care, disorganized diagnostic pathways, and stigma. Facilitators included access to information, person-centred care, support networks, recognition of personhood, and structured care navigation. The COVID-19 pandemic further shaped experiences.

Conclusion

Findings highlight the importance of compassionate care, accessible information, and coordinated services while underscoring systemic gaps, stigma, and the impact of the pandemic.