Health System, Community-Based, or Usual Dementia Care for Persons With Dementia and Caregivers
Authors: David B. Reuben, Thomas M. Gill, Alan Stevens, Jeff Williamson, Elena Volpi, Maya Lichtenstein, Lee A. Jennings, Rebecca Galloway, Jenny Summapund, Katy Araujo, David Bass, Lisa Weitzman, Zaldy S. Tan, Leslie Evertson, Mia Yang, Katherine Currie, Aval-Na’Ree S. Green, Sybila Godoy, Sitara Abraham, Jordan Reese, Rafael Samper-Ternent, Roxana M. Hirst, Pamela Borek, Peter Charpentier, Can Meng, James Dziura, Yunshan Xu, Eleni A. Skokos, Zili He, Sherry Aiudi, Peter Peduzzi, Erich J. Greene, Katherine S. Serrano, Erin Unger, Lucio E. Arruda, Lynn Bautista, Christopher Callahan, Katie Maslow, Shari M. Ling, Alice Bonner, Douglas Pace, Debra L. Cherry, Ian Kremer, Brenda Nicholson, Caroline Stephens, Ron Hendler, Martha B. Carnie, Amy Shelton, Bridget M Mignosa, Brian Funaro, Kraig Eisenmann, Charles Lu, Sumon Chattopadhyay, Delaney Rhoades, Alicia Lakomski, Dori Maher, Darcy McCurry, Samuel E. Williamson, Sarah Moyer, Linda Robertson, Anna Tilles, Linda Battle, William C. Walker, Sophia Levine, Grace Knight, Abbie C. Eaton, Tiffany H. Rose, Eileen M. Weston, Brittney S. Orr, Scott Lang, Sandra Rinaldi, Jennifer Shore, Linda J. Garboczi, Karen Phoenix, Mary Mitchell, Lisa Levan, Michael Layza, Dana M. Musgrave, Julie Silverman, Ashlyn Martin, Joseph Nienstedt, Ricky Handoo, Nancy Woolard, Deb Burcombe, Cara Hutchens, Sandhya Sanghi, Amarine K. Ocloo, Sophia Essiet, Monika Shah, Hannah Bartosh, Joseph Banda, Thomas Birchfield, Taylor Roznos, Breann Collins, Donna Parker, Michelle Matlock, Leslie Drew, Tametra Jones, Brandy Hill, Jamyl Walker, Julie Wills, Megan Andrews, Sara Kroloff, Grace Brown, Catherine Franz, Gitzell Perez, Emily C. Castillo, Cynthia A. Flores, Mukaila Raji, Eloisa Martinez, Paula Skinkis, Alice Williams, Susan L. Minello, Julia Sherrod, Adetutu A. Odejimi, Melissa Lockhart, Ann M. McDonald, Denise Gibson, Noga Tobias, Kathy Spetter, Glen Finney, Ilene Ladd, Kimberley Weaver, Paula Nicoletto, Deb Smith, Rosemarie DeLucca, Nicholas Delmar, Joshua Dopko, Mira Patel, Paul Berry, Krista Zimmerman, Joseph Fasciana, Lauren Hendricks, Kathryn Freedman, Samantha Gudonis, Holly Drutarovsky, Alyssa Gurzynski, Marissa Shillabeer, Kristen Shipsky, Colleen Cannon, Alanna Rahm, Lauri Sharf, Keith Kearney, Jodi Liu, Emmett Keeler, Teague Ruder
Journal: JAMA (2025)

Importance The effectiveness of different approaches to dementia care is unknown. Objective To determine the effectiveness of health system–based, community-based dementia care, and usual care for persons with dementia and for caregiver outcomes. Design, Setting, and Participants Randomized clinical trial of community-dwelling persons living with dementia and their caregivers conducted at 4 sites in the US (enrollment June 2019-January 2023; final follow-up, August 2023). Interventions Participants were randomized 7:7:1 to health system–based care provided by an advanced practice dementia care specialist (n = 1016); community-based care provided by a social worker, nurse, or licensed therapist care consultant (n = 1016); or usual care (n = 144). Main Outcomes and Measures Primary outcomes were caregiver-reported Neuropsychiatric Inventory Questionnaire (NPI-Q) severity score for persons living with dementia (range, 0-36; higher scores, greater behavioral symptoms severity; minimal clinically important difference [MCID], 2.8-3.2) and Modified Caregiver Strain Index for caregivers (range, 0-26; higher scores, greater strain; MCID, 1.5-2.3). Three secondary outcomes included caregiver self-efficacy (range, 4-20; higher scores, more self-efficacy). Results Among 2176 dyads (individuals with dementia, mean age, 80.6 years; 58.4%, female; and 20.6%, Black or Hispanic; caregivers, mean age, 65.2 years; 75.8%, female; and 20.8% Black or Hispanic), primary outcomes were assessed for more than 99% of participants, and 1343 participants (62% of those enrolled and 91% still alive and had not withdrawn) completed the study through 18 months. No significant differences existed between the 2 treatments or between treatments vs usual care for the primary outcomes. Overall, the least squares means (LSMs) for NPI-Q scores were 9.8 for health system, 9.5 for community-based, and 10.1 for usual care. The difference between health system vs community-based care was 0.30 (97.5% CI, −0.18 to 0.78); health system vs usual care, −0.33 (97.5% CI, −1.32 to 0.67); and community-based vs usual care, −0.62 (97.5% CI, −1.61 to 0.37). The LSMs for the Modified Caregiver Strain Index were 10.7 for health system, 10.5 for community-based, and 10.6 for usual care. The difference between health system vs community-based care was 0.25 (97.5% CI, −0.16 to 0.66); health system vs usual care, 0.14 (97.5% CI, −0.70 to 0.99); and community-based vs usual care, −0.10 (97.5% CI, −0.94 to 0.74). Only the secondary outcome of caregiver self-efficacy was significantly higher for both treatments vs usual care but not between treatments: LSMs were 15.1 for health system, 15.2 for community-based, and 14.4 for usual care. The difference between health system vs community-based care was −0.16 (95% CI, −0.37 to 0.06); health system vs usual care, 0.70 (95% CI, 0.26-1.14); and community-based vs usual care, 0.85 (95% CI, 0.42 to 1.29). Conclusions and Relevance In this randomized trial of dementia care programs, no significant differences existed between health system–based and community-based care interventions nor between either active intervention or usual care regarding patient behavioral symptoms and caregiver strain. Trial Registration ClinicalTrials.gov Identifier: NCT03786471