Gaps in the coordination of care for people living with dementia
Open accessAbstract
BACKGROUND: One-third of people living with dementia (PLWD) have highly fragmented care (i.e., care spread across many ambulatory providers without a dominant provider). It is unclear whether PLWD with fragmented care and their caregivers perceive gaps in communication among the providers involved and whether any such gaps are perceived as benign inconveniences or as clinically meaningful, leading to adverse events. We sought to determine the frequency of perceived gaps in communication (coordination) among providers and the frequency of self-reported adverse events attributed to poor coordination. METHODS: We conducted a cross-sectional study in the context of a Medicare accountable care organization (ACO) in New York in 2022-2023. We included PLWD who were attributed to the ACO, had fragmented care in the past year by claims (reversed Bice-Boxerman Index ≥0.86), and were in a pragmatic clinical trial on care management. We used an existing survey instrument to determine perceptions of care coordination and perceptions of four adverse events (repeat tests, drug-drug interactions, emergency department visits, and hospital admissions). ACO care managers collected data by telephone, using clinical judgment to determine whether each survey respondent was the patient or a caregiver. We used descriptive statistics to summarize results. RESULTS: Of 167 eligible PLWD, surveys were completed for 97 (58.1%). Of those, 88 (90.7%) reported having >1 ambulatory visit and >1 ambulatory provider and were thus at risk for gaps in care coordination and included in the analysis. Of those, 23 respondents were patients (26.1%) and 64 were caregivers (72.7%), with one respondent's role missing. Overall, 57% of respondents reported a problem (or "gap") in the coordination of care and, separately, 18% reported an adverse event that they attributed to poor care coordination. CONCLUSION: Gaps in coordination of care for PLWD are reported to be very common and often perceived as hazardous.
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Fragmentation is particularly problematic for people with dementia who may have difficulty communicating their needs and medical history, increasing their risk of adverse outcomes during transitions.
“This fragmentation was particularly problematic for people with dementia who may have difficulty communicating their needs and medical history, increasing their risk of adverse outcomes during transitions”
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 Kern et al., 2024
The Introduction says people living with dementia may be particularly vulnerable to the adverse effects of fragmented care, and the Results report adverse events that respondents attributed to poor coordination. The paper does not attribute that vulnerability to difficulty communicating needs or medical history, or specifically examine risk during care transitions. Page numbers are not available in our copy. (LLM, conf=0.86)
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Cited by
Sorted by citations
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- Authors
- Kern, L. M., Riffin, C., Phongtankuel, V., Aucapina, J. E., Banerjee, S., Ringel, J. B., Tobin, J. N., Fisseha, S., Meiri, H., Bell, S. K., & Casale, P. N.
- Affiliations
- Weill Cornell Medicine (US)
- Clinical Directors Network (US)
- Beth Israel Deaconess Medical Center (US)
- Corresponding author
- Kern, Lisa M.
- ORCID
- Venue
- Journal of the American Geriatrics Society
- Publisher
- Wiley
- Published
- 2024-07-29
- Volume
- 72
- Issue
- 10
- Pages
- 3119-3128
- ISSN
- 0002-8614 (ISSN-L)
- 1532-5415
- PMC
- PMC11461100
- OpenAlex
- W4401076544
- Cited by
- 19
- References
- 25
- Citations by year
- 2026: 8 · 2025: 11
- FWCI
- 5.56
- Type
- journal article
- Language
- en
- Open access
- green
- pmc.ncbi.nlm.nih.gov
- Locations
- Journal of the American Geriatrics Society (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- Funders
- National Center for Advancing Translational Sciences (UL1TR002384)
- National Institute on Aging (U54AG063546)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Geriatrics and Gerontology › Pharmaceutical Practices and Patient Outcomes
- Social Sciences › Business, Management and Accounting › Organizational Behavior and Human Resource Management › Healthcare Systems and Technology
- Keywords
- dementia, care coordination, care fragmentation, provider communication, adverse events, caregivers, outpatient care, care management
- MeSH terms
- Aged, Aged, 80 and over, Communication, Continuity of Patient Care, Cross-Sectional Studies, Dementia, Female, Medicare, Humans, Male, New York, United States, Caregivers, Accountable Care Organizations
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