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Exploring Diagnostic and Post-Diagnostic Care Experiences among People Living with Dementia and Care Partners in
Emma Conway1, Shelley Doucet2, Carrie McAiney1,3
1School of Public Health Sciences, https://ror.org/01aff2v68University of Waterloo, Canada.
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.
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