"Seeing the day-to-day situation": A grounded theory of how persons living with dementia and their family caregivers experience the hospital to home transition and beyond.

Most older adults with dementia live at home, they primarily receive care provided by family members and friends. Given the decline in memory and other cognitive functions, there to be higher rates of touch points with the health system for those living with dementia. Evidence has shown that these care transitions mark critical changes in the lives of older people, including significant and far-reaching changes to family caregivers. Therefore, it is imperative that complex social processes enacted by persons with dementia and their family caregivers in response to care transitions be more thoroughly explained. This study took place in Canada between 2019 and 2021 and adopted a constructivist grounded theory design. Twenty-five people participated in 20 interviews: 4 people living with dementia and 21 caregivers. We report on six concepts grounded in the data that are linked to a core process engaged in by the participants throughout the care transition journey and beyond: Seeing the day-to-day situation. This study contributes theoretically to the care transition literature by making explicit not only the visible work done by patient-caregiver days during the care transition journey, but it has also illuminated the ongoing processes engaged in by caregivers who are navigating the health and social care systems with their family member living with dementia. During the care transition, and beyond, the caregiver is forced to take over and connect the dots. Even though the caring experience is fraught with traumatic and very challenging situations, for many caregivers, they rise above and can reconcile their suffering with a desire to help their family member and others who may be going through similar experiences. This theory provides a foundation on which to develop theory-driven interventions that focus on support the patient-caregiver dyad during care transitions.