"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
Abstract
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.
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Many caregivers felt that existing health care guidance was insufficient and experienced a lack of clear, coordinated information, often needing to "connect the dots" themselves to understand what services were available or how to access them.
“Many caregivers felt that existing health care guidance was insufficient and experienced a lack of clear, coordinated information, often needing to “connect the dots” themselves to understand what services were available or how to access them (Fekonja et al., 2021; Saragosa et al., 2023).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Saragosa et al., 2023
Palliative care consultations were infrequent despite the terminal trajectory of dementia.
“Despite the terminal trajectory of dementia, palliative care consultations were infrequent, and many caregivers remained unaware of ACP processes, leaving them unprepared and distressed during critical care transition decisions (Mogan et al., 2022; Radcliffe et al., 2023; Saragosa et al., 2023; Sharda et al., 2020).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Saragosa et al., 2023
Many caregivers remained unaware of ACP processes, leaving them unprepared and distressed during critical care transition decisions.
“Despite the terminal trajectory of dementia, palliative care consultations were infrequent, and many caregivers remained unaware of ACP processes, leaving them unprepared and distressed during critical care transition decisions (Mogan et al., 2022; Radcliffe et al., 2023; Saragosa et al., 2023; Sharda et al., 2020).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Saragosa et al., 2023
Dedicated care coordinators, such as case managers or primary nurses, were found to guide families effectively through complex transitions.
“Similarly, dedicated care coordinators, such as case managers or primary nurses, were found to guide families effectively through complex transitions (Khemai et al., 2022; Saragosa et al., 2023; Zmora et al., 2021).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Saragosa et al., 2023
Some caregivers described the ideal support figure as a "cheerleader," a trusted individual who was clinically competent, empathetic, and consistently available throughout the transition journey.
“Some caregivers described the ideal support figure as a “cheerleader,” a trusted individual who was clinically competent, empathetic, and consistently available throughout the transition journey (Saragosa et al., 2023).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Saragosa et al., 2023
The decision to move a loved one, frequently perceived as a "last resort," was commonly met with resistance, anxiety, and grief.
“The decision to move a loved one, frequently perceived as a “last resort,” was commonly met with resistance, anxiety, and grief (Fitzpatrick & Grace, 2019; Hui et al., 2022; Saragosa et al., 2023; Wright et al., 2024).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Saragosa et al., 2023
Family caregivers provide the majority of care in homes and communities.
“caregivers provide the majority of care in homes and communities, support system navigation, and maintain continuity of care, often bridging the gaps left by fragmented service delivery models [2,3,4].”
From Home care comparison (2026) · cites this paper as [2]
Family caregivers maintain continuity of care, often bridging gaps left by fragmented service delivery models.
“caregivers provide the majority of care in homes and communities, support system navigation, and maintain continuity of care, often bridging the gaps left by fragmented service delivery models [2,3,4].”
From Home care comparison (2026) · cites this paper as [2]
Family caregivers support system navigation.
“caregivers provide the majority of care in homes and communities, support system navigation, and maintain continuity of care, often bridging the gaps left by fragmented service delivery models [2,3,4].”
From Home care comparison (2026) · cites this paper as [2]
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- Authors
- Saragosa, M., Kuluski, K., Okrainec, K., & Jeffs, L.
- Affiliations
- University of Toronto (CA)
- University Health Network (CA)
- Corresponding author
- Saragosa, Marianne
- Venue
- Journal of Aging Studies
- Publisher
- Elsevier BV
- Published
- 2023-06
- Volume
- 65
- Pages
- 101132
- ISSN
- 0890-4065 (ISSN-L)
- OpenAlex
- W4360603262
- Semantic Scholar
- 33e9ae5445edcfdc128b955af561ba1f597d437c
- Cited by
- 13
- References
- 76
- Citations by year
- 2026: 7 · 2025: 4 · 2024: 1 · 2023: 1
- FWCI
- 2.64
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- Locations
- Journal of Aging Studies (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Canadian Institutes of Health Research (RN447323 - 460820)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Keywords
- dementia, family caregivers, hospital-to-home transition, care transitions, patient-caregiver dyads, caregiver experiences, older adults, health and social care systems, caregiver burden, theory-based intervention
- MeSH terms
- Hospital to Home Transition, Aged, Dementia, Family, Humans, Caregivers, Grounded Theory
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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