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Care Interventions for People Living With Dementia and Their Caregivers

Prepublication Final Report

Systematic Review

This prepublication final report is available in PDF only (Prepublication Report, 11.2 MB). For additional assistance, please contact us.

Background and Purpose

The aging of the U.S. population and the concurrent rise in the number of adults living with dementia underscore the urgent need for a systematic review of the available evidence for care interventions for people living with dementia (PLWD) and their formal and informal caregivers. The National Institute on Aging (NIA) commissioned such a review from the Evidence-based Practice Center Program at the Agency for Healthcare Research and Quality (AHRQ). Dementia affects about 5 million U.S. adults 65 years and older (with disparities by race and ethnicity), and that number may grow to almost 14 million by 2060.1, 2

The goal is to understand the evidence base for effective care interventions, and to assess the potential for broad dissemination and implementation of that evidence. Subsequently, a NASEM committee of experts, established at the request of the NIA, will use the evidence findings delivered in this report to help develop its own independent recommendations regarding which care interventions are supported by sufficient evidence to be widely disseminated and implemented, as well as to identify research gaps.

Main Points

  • An intensive multicomponent intervention with education, group discussion, in-home and phone support sessions, and caregiver feedback for informal caregiver support (i.e. discrete adaptations of REACH II), may improve informal caregiver depression and quality of life at 6 months. (low-strength evidence)
  • Collaborative care models (i.e. Care Ecosystems or discrete adaptations of the ACCESS models) may improve PLWD quality of life. (low-strength evidence) The literature does not allow for further determination of whether the very small to small average effects applied to all enrolled PLWD or if larger effects were concentrated in an unidentified subgroup.
  • Collaborative care models (i.e. discrete adaptations of the ACCESS model) may improve system-level markers, including guideline-based quality indicators and reduction in emergency department visits. (low-strength evidence)
  • For all other outcomes and interventions, we found the evidence was insufficient because the uncertainty of the evidence was too high to draw conclusions.
  • We found little information to determine whether interventions are equally appropriate for or have been successfully adapted to other race/ethnic cultures within the United States, rural communities/communities with low resources, or specific populations of PLWD, such as people with Down syndrome or complex presentations of dementias.

Structured Abstract

Objective. To understand the evidence base for care interventions for people living with dementia (PLWD) and their caregivers, and to assess the potential for broad dissemination and implementation of that evidence.

Data sources. We searched Ovid Medline, Ovid Embase, Ovid PsycINFO, CINAHL, and the Cochrane Central Register of Controlled Trials (CENTRAL) to identify randomized controlled trials, nonrandomized controlled trials, and quasi-experimental designs published and indexed in bibliographic databases through March, 2020.

Review methods. We searched for nondrug interventions targeting PLWD, their informal or formal caregivers, or health systems. Two investigators screened abstracts and full-text articles of identified references for eligibility. Eligible studies included randomized controlled trials and quasi-experimental observational studies enrolling people with Alzheimer’s disease or related dementias or their informal or formal caregivers. We extracted basic study information from all eligible studies. We assessed risk of bias, and summarized results for studies not judged to be NIH Stage Model 0 to 2 (pilot or small sample size studies) or to have high risk of bias. We grouped interventions into categories based on intervention target.

Results. We identified 9217 unique references, of which 627 unique studies with an additional 267 companion articles were eligible. We classified interventions into 37 major categories. With few exceptions, we did not combine data quantitatively due to variability of interventions, comparison groups, outcomes measured, and study timing. Low-strength evidence shows that an intensive multicomponent intervention for informal caregiver support, with education, group discussion, in-home and phone support, and caregiver feedback (i.e. discrete adaptations of REACH II), may improve informal caregiver depression at 6 months. Low-strength evidence also shows that collaborative care models (i.e. Care Ecosystems or discrete adaptations of the ACCESS models) may improve quality of life for PLWD and health system-level markers, including improvements in guideline-based quality indicators and reducing emergency room visits. The literature does not allow for further determination of whether the very small to small average effects in quality of life applied to all enrolled PLWD or if larger effects were concentrated in an unidentified subgroup. For all other interventions and outcomes, we found the evidence insufficient to draw conclusions. Insufficient evidence does not mean that the intervention is determined to be of no value to PLWD or their caregivers. Rather, it means that due to the uncertainty of the evidence, we could not draw meaningful conclusions at this time.

Conclusions. Despite hundreds of studies, very little evidence supports widespread dissemination of any general care approaches for PLWD or caregivers. This review demonstrates the need for larger, longer-term, and more rigorous studies of interventions.

References

  1. Matthews KA, Xu W, Gaglioti AH, et al. Racial and ethnic estimates of Alzheimer's disease and related dementias in the United States (2015-2060) in adults aged >65 years. Alzheimers Dement. 2019 Jan;15(1):17-24. doi: 10.1016/j.jalz.2018.06.3063. PMID: 30243772.
  2. Hebert LE, Weuve J, Scherr PA, et al. Alzheimer disease in the United States (2010-2050) estimated using the 2010 census. Neurology. 2013 May 7;80(19):1778-83. doi: 10.1212/WNL.0b013e31828726f5. PMID: 23390181.

Citation

Suggested citation: Butler M, Gaugler JE, Talley KMC, Abdi HI, Desai PJ, Duval S, Fort ML, Nelson VA, NG W, Ouellette JM, Ratner E, Saha J, Shippee T, Wagner BL, Wilt TJ, Yeshi L. Care Interventions for People Living With Dementia and Their Caregivers. Comparative Effectiveness Review No. 231. (Prepared by the Minnesota Evidence-based Practice Center under Contract No. 290-2015-00008-I.) AHRQ Publication No. 20-EHC023. Rockville, MD: Agency for Healthcare Research and Quality; July 2020. Posted final reports are located on the Effective Health Care Program search page. DOI: https://doi.org/10.23970/AHRQEPCCER231.