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