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Cited by 272Dementia and Cognitive Impairment ResearchNursing care and researchTelemedicine and Telehealth Implementation

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Effect of Collaborative Dementia Care via Telephone and Internet on Quality of Life, Caregiver Well-being, and Health Care Use: The Care Ecosystem Randomized Clinical Trial

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Possin, Katherine L., Merrilees, Jennifer J., Dulaney, Sarah, Bonasera, Stephen J., Chiong, Winston, Lee, Kirby, Hooper, Sarah M., Allen, Isabel Elaine, Braley, Tamara, Bernstein, Alissa, Rosa, Talita D., Harrison, Krista, Begert-Hellings, Hailey, Kornak, John, Kahn, James G., Naasan, Georges, Lanata, Serggio, Clark, Amy M., Chodos, Anna, Gearhart, Rosalie, Ritchie, Christine, Miller, Bruce L.·2019·JAMA Internal Medicine
DOI 10.1001/jamainternmed.2019.4101PMC PMC6777227
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Abstract

Importance: Few health systems have adopted effective dementia care management programs. The Care Ecosystem is a model for delivering care from centralized hubs across broad geographic areas to caregivers and persons with dementia (PWDs) independently of their health system affiliations. Objective: To determine whether the Care Ecosystem is effective in improving outcomes important to PWDs, their caregivers, and payers beyond those achieved with usual care. Design, Setting, and Participants: A single-blind, randomized clinical trial with a pragmatic design was conducted among PWDs and their caregivers. Each PWD-caregiver dyad was enrolled for 12 months between March 20, 2015, and February 28, 2017. Data were collected until March 5, 2018. Study interventions and assessments were administered over the telephone and internet by clinical and research teams in San Francisco, California, and Omaha, Nebraska. Of 2585 referred or volunteer PWD-caregiver dyads in California, Iowa, or Nebraska, 780 met eligibility criteria and were enrolled. A total of 512 PWD-caregiver dyads were randomized to receive care through the Care Ecosystem and 268 dyads to receive usual care. All eligible PWDs had a dementia diagnosis; were enrolled or eligible for enrollment in Medicare or Medicaid; and spoke English, Spanish, or Cantonese. Analyses were intention-to-treat. Intervention: Telephone-based collaborative dementia care was delivered by a trained care team navigator, who provided education, support and care coordination with a team of dementia specialists (advanced practice nurse, social worker, and pharmacist). Main Outcomes and Measures: Primary outcome measure: Quality of Life in Alzheimer's Disease based on caregiver's rating of 13 aspects of PWD's well-being (including physical health, energy level, mood, living situation, memory, relationships, and finances) on a 4-point scale (poor to excellent). Secondary outcomes: frequencies of PWDs' use of emergency department, hospitalization, and ambulance services; caregiver depression (score on 9-Item Patient Health Questionnaire; higher scores indicate more severe depression); and caregiver burden (score on 12-Item Zarit Burden Interview; higher scores indicate more severe caregiver burden). Results: The 780 PWDs (56.3% female; mean [SD] age, 78.1 [9.9] years) and 780 caregivers (70.9% female; mean [SD] age, 64.7 [12.0] years) lived in California (n = 452), Nebraska (n = 284), or Iowa (n = 44). Of 780 dyads, 655 were still active at 12 months, and 571 completed the 12-month survey. Compared with usual care, the Care Ecosystem improved PWD quality of life (B, 0.53; 95% CI, 0.25-1.30; P = .04), reduced emergency department visits (B, -0.14; 95% CI, -0.29 to -0.01; P = .04), and decreased caregiver depression (B, -1.14; 95% CI, -2.15 to -0.13; P = .03) and caregiver burden (B, -1.90; 95% CI, -3.89 to -0.08; P = .046). Conclusions and Relevance: Effective care management for dementia can be delivered from centralized hubs to supplement usual care and mitigate the growing societal and economic burdens of dementia. Trial Registration: ClinicalTrials.gov identifier: NCT02213458.

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Authors
Possin, K. L., Merrilees, J. J., Dulaney, S., Bonasera, S. J., Chiong, W., Lee, K., Hooper, S. M., Allen, I. E., Braley, T., Bernstein, A., Rosa, T. D., Harrison, K., Begert-Hellings, H., Kornak, J., Kahn, J. G., Naasan, G., Lanata, S., Clark, A. M., Chodos, A., Gearhart, R., Ritchie, C., & Miller, B. L.
Affiliations
  • University of California, San Francisco (US)
  • University of Nebraska Medical Center (US)
  • Global Brain Health Institute, University of California, San Francisco
Corresponding author
Possin, Katherine L.
ORCID
Venue
JAMA Internal Medicine
Publisher
American Medical Association (AMA)
Published
2019-12-01
Volume
179
Issue
12
Pages
1658
ISSN
2168-6106 (ISSN-L)
DOI
10.1001/jamainternmed.2019.4101
PMC
PMC6777227
OpenAlex
W2976855290
Cited by
272
References
43
Citations by year
2026: 37 · 2025: 67 · 2024: 44 · 2023: 40 · 2022: 38 · 2021: 30 · 2020: 13 · 2019: 1
FWCI
16.30
Type
journal article
Language
en
Open access
Locations
  • JAMA Internal Medicine (publishedVersion)
  • PubMed Central (publishedVersion)
  • PubMed (publishedVersion)
  • eScholarship (California Digital Library) (submittedVersion)
Funders
  • U.S. Department of Health and Human Services (1C1CMS331346)
  • John A. Hartford Foundation
  • Hartford Foundation for Public Giving
  • Patient-Centered Outcomes Research Institute
  • American Academy of Hospice and Palliative Medicine
  • Quest Diagnostics
  • National Institutes of Health (KL2TR001870)
  • Agency for Healthcare Research and Quality (T32HS022241)
  • University of California, San Francisco
  • National Institute on Aging (L30 AG060590, R01AG056715, K01AG059831, P30AG062422)
  • National Institute of Neurological Disorders and Stroke (UH3NS105557, UG3NS105557)
  • National Center for Advancing Translational Sciences
Topics
  • Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
  • Health Sciences › Nursing › Research and Theory › Nursing care and research
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Telemedicine and Telehealth Implementation
Keywords
dementia care, care ecosystem, caregiver well-being, caregiver depression, caregiver burden, health care utilization, emergency department visits, hospitalization, ambulance use, Medicare and Medicaid, advanced practice nurses, social workers, pharmacists, telemedicine, usual care comparison, older adults with dementia
MeSH terms
Aged, Aged, 80 and over, Delivery of Health Care, Dementia, Female, Humans, Male, Middle Aged, Patient Acceptance of Health Care, Quality of Life, Single-Blind Method, Caregivers

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