A mixed‐methods evaluation of home‐based primary care in dementia within an integrated system
Abstract
Background: No prior studies have examined the effects of home‐based primary care (HBPC) in persons living with dementia (PLWD), within an ecosystem of serious illness care in an integrated healthcare system. Our objectives were to compare the characteristics of PLWD receiving HBPC and their hospital utilization and end‐of‐life care, with those of a matched comparison group, and to understand the experiences of family caregivers of PLWD receiving HBPC. Methods: This mixed‐methods study used a retrospective observational cohort design with PLWD receiving HBPC ( n = 287) from 2015 to 2020 and a strata‐matched comparison group ( n = 861), and qualitative phone interviews with 16 HBPC family caregivers in 2020. Inverse probability of treatment weighting propensity score‐adjusted models were used to compare time‐to‐first hospital‐based utilization and, for decedents, home palliative and hospice care and place of death. Care experience was captured through caregiver interviews. Results: Patients receiving HBPC had a similar risk of hospital utilization [adjusted hazard ratio, 1.06 (95% CI: 0.89–1.26), p = 0.51] as a matched non‐HBPC comparison group after a median follow‐up of 199 days. However, HBPC decedents ( n = 159) were more likely to receive home palliative care or hospice [rate ratio, RR: 1.23 (95% CI: 1.07–1.42), p < 0.01] and to die at home [RR: 1.66 (95% CI: 1.35–2.05), p < 0.001] than were non‐HBPC decedents ( n = 423). Caregivers reported that HBPC provided coordinated, continuous, and convenient care that was aligned with families' priorities and goals; however, some expressed unmet needs, especially for help paying for personal care and medical supplies/equipment, and a desire for clearer communication about program operations and more quality oversight for contract services. Conclusions: Although HBPC for PLWD was associated with a similar risk of hospital utilization compared to a matched non‐HBPC comparison group, HBPC resulted in more patient‐centered end‐of‐life care for decedents. Prospective studies of HBPC that further elicit and address unmet needs are warranted.
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Carers' knowledge (e.g., health literacy, the patient's care needs) was linked to their experience of carer burden, and use of urgent care after returning home, and contributed to the ways they engaged with information provided at discharge.
“Carers’ knowledge (e.g., health literacy, the patient’s care needs) was linked to their experience of carer burden, and use of urgent care after returning home, and contributed to the ways they engaged with information provided at discharge [43, 44, 57, 59, 60, 64, 66, 67].”
From Do hospital-to-home transitions work for older adults with multiple long-term conditions including dementia? A realist review (2025) · cites this paper as [59]
Post-discharge follow-up was linked to carers understanding of condition management, and confidence to support the patient's needs.
“Post-discharge follow-up was linked to carers understanding of condition management, and confidence to support the patient’s needs [28, 44, 53–55, 58–60, 62–65].”
From Do hospital-to-home transitions work for older adults with multiple long-term conditions including dementia? A realist review (2025) · cites this paper as [59]
Increasing care needs due to other conditions was linked to exacerbation of dementia symptoms, increasing reliance on others, and subsequently placing more responsibility on carers (CMOC1).
“Increasing care needs due to other conditions was linked to exacerbation of dementia symptoms, increasing reliance on others, and subsequently placing more responsibility on carers (CMOC1) [28, 44, 46–48, 54, 59, 69–74].”
From Do hospital-to-home transitions work for older adults with multiple long-term conditions including dementia? A realist review (2025) · cites this paper as [59]
Older adults with MLTCiD were rarely referred to palliative care services early in their dementia journey due to a lack of awareness of the benefits for patients with dementia (CMOC10).
“For example, while palliative care can support quality of life and prevent unnecessary transitions, older adults with MLTCiD were rarely referred to these services early in their dementia journey due to a lack of awareness of the benefits for patients with dementia (CMOC10) [59, 64, 85, 86].”
From Do hospital-to-home transitions work for older adults with multiple long-term conditions including dementia? A realist review (2025) · cites this paper as [59]
Healthcare professionals working outside of geriatric care were often unaware of dementia diagnoses.
“As a result, HCPs working outside of geriatric care were often unaware of dementia diagnoses (CMOC14) [50, 53, 59, 66, 79, 86, 89].”
From Do hospital-to-home transitions work for older adults with multiple long-term conditions including dementia? A realist review (2025) · cites this paper as [59]
There is a clear lack of appropriate knowledge and training for healthcare professionals on dementia, which had a knock-on effect on discharge planning and patient access to services.
“Our findings suggest that there is a clear lack of appropriate knowledge and training for HCPs on dementia, which had a knock-on effect on discharge planning and patient access to services [46, 50, 51, 54, 59, 61, 73, 74, 77, 78, 80–86].”
From Do hospital-to-home transitions work for older adults with multiple long-term conditions including dementia? A realist review (2025) · cites this paper as [59]
Compared to standard care, people receiving HBPC were more likely to die at home and access hospice services.
“Compared to standard care, people receiving HBPC were more likely to die at home and access hospice services—outcomes highly valued by families.”
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 Nguyen et al., 2022
Caregivers reported that HBPC alleviated their burden by offering comprehensive, consistent support and reducing the need to navigate fragmented systems.
“Caregivers reported that HBPC alleviated their burden by offering comprehensive, consistent support and reducing the need to navigate fragmented systems (Nguyen et al., 2022).”
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 Nguyen et al., 2022
HBPC reduced unnecessary hospitalizations and facilitated access to in-home palliative care.
“Delivered by interdisciplinary teams directly in the home, HBPC reduced unnecessary hospitalizations and facilitated access to in-home palliative care.”
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 Nguyen et al., 2022
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“As a result, HCPs working outside of geriatric care were often unaware of dementia diagnoses (CMOC14) [50, 53, 59, 66, 79, 86, 89].”
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- Authors
- Nguyen, H. Q., Vallejo, J. D., Macias, M., Shiffman, M. G., Rosen, R., Mowry, V., Omotunde, O., Hong, B., Liu, I. A., & Borson, S.
- Affiliations
- Kaiser Permanente (US)
- Department of Psychiatry and Behavioral Sciences, School of Medicine University of Washington Seattle Washington USA
- Corresponding author
- Nguyen, Huong Q.
- Venue
- Journal of the American Geriatrics Society
- Publisher
- Wiley
- Published
- 2021-12-22
- Volume
- 70
- Issue
- 4
- Pages
- 1136-1146
- ISSN
- 0002-8614 (ISSN-L)
- 1532-5415
- OpenAlex
- W4200453241
- Cited by
- 15
- References
- 44
- Citations by year
- 2026: 4 · 2025: 4 · 2024: 1 · 2023: 3 · 2022: 3
- FWCI
- 1.52
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of the American Geriatrics Society (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Keywords
- home-based primary care, dementia, end-of-life care, hospital utilization, home-based palliative care, hospice care, place of death, family caregivers, caregiver experiences, integrated health system, serious illness care, unmet needs, patient-centered care
- MeSH terms
- Dementia, Home Care Services, Humans, Primary Health Care, Prospective Studies, Retrospective Studies, Ecosystem
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