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

Katherine L. Possin, Jennifer J. Merrilees, Sarah Dulaney, Stephen J. Bonasera, Winston Chiong, Kirby Lee, Sarah M. Hooper, Isabel Elaine Allen, Tamara Braley, Alissa Bernstein, Talita D. Rosa, Krista Harrison, Hailey Begert-Hellings, John Kornak, James G. Kahn, Georges Naasan, Serggio Lanata, Amy M. Clark, Anna Chodos, Rosalie GearhartChristine Ritchie, Bruce L. Miller

Research output: Contribution to journalArticle

1 Citation (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)1658-1667
Number of pages10
JournalJAMA Internal Medicine
Volume179
Issue number12
DOIs
StatePublished - Dec 2019

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Telephone
Internet
Caregivers
Ecosystem
Dementia
Randomized Controlled Trials
Quality of Life
Delivery of Health Care
Depression
Hospital Emergency Service
Health
Outcome Assessment (Health Care)
Intention to Treat Analysis
Ambulances
San Francisco
Medicaid
Medicare
Pharmacists
Health Status
Volunteers

ASJC Scopus subject areas

  • Internal Medicine

Cite this

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. / 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.

In: JAMA Internal Medicine, Vol. 179, No. 12, 12.2019, p. 1658-1667.

Research output: Contribution to journalArticle

Possin, KL, Merrilees, JJ, Dulaney, S, Bonasera, SJ, Chiong, W, Lee, K, Hooper, SM, Allen, IE, Braley, T, Bernstein, A, Rosa, TD, Harrison, K, Begert-Hellings, H, Kornak, J, Kahn, JG, Naasan, G, Lanata, S, Clark, AM, Chodos, A, Gearhart, R, Ritchie, C & Miller, BL 2019, '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', JAMA Internal Medicine, vol. 179, no. 12, pp. 1658-1667. https://doi.org/10.1001/jamainternmed.2019.4101
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. / 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. In: JAMA Internal Medicine. 2019 ; Vol. 179, No. 12. pp. 1658-1667.
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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.",
author = "Possin, {Katherine L.} and Merrilees, {Jennifer J.} and Sarah Dulaney and Bonasera, {Stephen J.} and Winston Chiong and Kirby Lee and Hooper, {Sarah M.} and Allen, {Isabel Elaine} and Tamara Braley and Alissa Bernstein and Rosa, {Talita D.} and Krista Harrison and Hailey Begert-Hellings and John Kornak and Kahn, {James G.} and Georges Naasan and Serggio Lanata and Clark, {Amy M.} and Anna Chodos and Rosalie Gearhart and Christine Ritchie and Miller, {Bruce L.}",
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TY - JOUR

T1 - Effect of Collaborative Dementia Care via Telephone and Internet on Quality of Life, Caregiver Well-being, and Health Care Use

T2 - The Care Ecosystem Randomized Clinical Trial

AU - Possin, Katherine L.

AU - Merrilees, Jennifer J.

AU - Dulaney, Sarah

AU - Bonasera, Stephen J.

AU - Chiong, Winston

AU - Lee, Kirby

AU - Hooper, Sarah M.

AU - Allen, Isabel Elaine

AU - Braley, Tamara

AU - Bernstein, Alissa

AU - Rosa, Talita D.

AU - Harrison, Krista

AU - Begert-Hellings, Hailey

AU - Kornak, John

AU - Kahn, James G.

AU - Naasan, Georges

AU - Lanata, Serggio

AU - Clark, Amy M.

AU - Chodos, Anna

AU - Gearhart, Rosalie

AU - Ritchie, Christine

AU - Miller, Bruce L.

PY - 2019/12

Y1 - 2019/12

N2 - 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.

AB - 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.

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