Abstract A101: Views of People Living with Prior Disability or Dementia and their Family Caregivers on Post-Stroke Outcomes: Results from the SEED Qualitative Study

Introduction: Functional independence has consistently been the primary outcome of interest in clinical stroke research. However, for the one in three stroke patients living with prior disability or dementia (PLWD), this outcome is typically unattainable. To inform future research that meaningfully includes PLWD—and ultimately improve stroke care for this population—we sought to understand the post-stroke outcome priorities and perspectives of PLWD and their family caregivers. Methods: To identify prospective participants, we reviewed clinical notes from encounters of stroke cases admitted or consulted across multiple sites by the Calgary Stroke Program in Alberta, Canada. Eligible PLWD were ≥65-year-olds, diagnosed with acute stroke while living with dementia or disability, and had a family caregiver willing to take part in the study. Consenting patient-caregiver dyads completed in-depth, semi-structured interviews. Interviews were recorded, transcribed, and analyzed applying an interpretive grounded theory approach. Results: We conducted 22 dyadic interviews. A key theme emerged regarding the imperativeness of maintaining valued aspects of one’s identity and everyday life. Described priorities included upholding meaningful relationships (with communication abilities being key), having a role within the family and broader community, performing specific tasks independently (e.g. walking, showering), and engaging in valued, enjoyed activities, with examples ranging from eating favourite foods to golfing. While interviews revealed that personal priorities and views on acceptability of outcomes often evolve in response to increasing functional limitations, some participants expressed that quality of life can decline to a point perceived as worse than death. In these cases, death was viewed as a release from a state marked by physical suffering, loss of sources of joy, or a sense of being reduced to a burden. Conclusion: Following acute stroke, maintaining meaningful relationships and engaging in valued, enjoyable activities are prioritized by PLWD and their family caregivers. Given that each individual may value different aspects of their pre-stroke daily life, research involving PLWD should avoid relying solely on absolute measures of functional status, such as a raw modified Rankin Scale score. Instead, we recommend focusing on assessments that capture return to pre-stroke status and self- or informant-reported quality of life.