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Review
. 2023 Aug 1;9(3):e12408.
doi: 10.1002/trc2.12408. eCollection 2023 Jul-Sep.

Dementia care navigation: Building toward a common definition, key principles, and outcomes

Beth A Kallmyer  1 , David Bass  2 , Matthew Baumgart  1 , Christopher M Callahan  3 , Sarah Dulaney  4 , Leslie C Evertson  5 , Sam Fazio  1 , Katherine S Judge  6 , Quincy Samus  7
Affiliations
Review

Dementia care navigation: Building toward a common definition, key principles, and outcomes

Beth A Kallmyer et al. Alzheimers Dement (N Y). .

Abstract

Introduction: As the complexity of medical treatments and patient care systems have increased, the concept of patient navigation is growing in both popularity and breadth of application. Patient navigators are trained personnel whose role is not to provide clinical care, but to partner with patients to help them identify their needs and goals and then overcome modifiable patient-, provider-, and systems-level barriers. Due to its high incidence, duration, and medical-social complexity, dementia is an ideal candidate for a patient-centric health care delivery model such as care navigation.

Methods: The Alzheimer's Association formed an expert workgroup of researchers in the field of dementia care navigation to identify evidence-based guidelines.

Results: Recognizing the unique and challenging needs of persons living with dementia and their care partners, several U.S. dementia care navigation programs have been developed and assessed in recent years. Collectively these programs demonstrate that persons living with dementia and their care partners benefit from dementia care navigation. Improved care system outcomes for the person living with dementia include reduced emergency department visits, lower hospital readmissions, fewer days hospitalized, and shorter delays in long-term care placement. Well-being is also increased, as there is decreased depression, illness, strain, embarrassment, and behavioral symptoms and increased self-reported quality of life. For care partners, dementia navigation resulted in decreased depression, burden, and unmet needs.

Discussion: This article presents principles of dementia care navigation to inform existing and emerging dementia care navigation programs.

Highlights: Several U.S. dementia care navigation programs have demonstrated outcomes for persons living with dementia, care partners, and health systems.The Alzheimer's Association formed an expert workgroup of researchers in the field of dementia care navigation to create a shared definition and identify evidence-based guidelines or principles.These outlined principles of dementia care navigation can inform existing and emerging dementia care navigation programs.

Keywords: care navigation; care planning; dementia; patient navigators.

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Conflict of interest statement

B.K.: Travel expenses for the Dementia Care Navigation workgroup meeting were provided by the Alzheimer's Association. C.C.: Travel expenses for the Dementia Care Navigation workgroup meeting were provided by the Alzheimer's Association. Member of UCLA D‐CARE Advisory Board. D.B.: Travel expenses for the Dementia Care Navigation workgroup meeting were provided by the Alzheimer's Association. Licensing fee from organizations to Benjamin Rose Institute (BRI) on Aging for permission and all materials and training to deliver BRI Care Consultation. K.J.: Travel expenses for the Dementia Care Navigation workgroup meeting were provided by the Alzheimer's Association. L.E.: Travel expenses for the Dementia Care Navigation workgroup meeting were provided by the Alzheimer's Association. NIH/NIA Caregiver Outcomes of an Alzheimer's and Dementia Care Program. (Award # R21 AG054681) Role, co‐investigator. Payments made to UCLA 9/1/2017 – 5/31/2020. PCORI, Pragmatic Trial of the Effectiveness and Cost‐Effectiveness of Dementia Care. (Award # R01 AG061078) role co‐investigator. Payments made to UCLA 9/30/2018 – 5/31/2023. NIA/NIH Comparative Effectiveness of Health System vs Community‐based Dementia Care. (Award # PCS‐2017C1‐6534). Role, co‐investigator. Payments made to UCLA 4/1/2018 – 9/30/2025. The John A. Hartford Association Dissemination of the UCLA Alzheimer's and Dementia Care Management Program. (Award # 2018‐0088). Role, co‐investigator. Payments made to UCLA 1/1/2019 – 12/31/2021. The John A. Hartford Foundation Expansion of the UCLA Alzheimer's and Dementia Care Management Program. (Award # 2021‐0160). Role, co‐investigator. Payments made to UCLA 1/1/2022 – 12/31/2024). M.B.: Travel expenses for the Dementia Care Navigation workgroup meeting were provided by the Alzheimer's Association. Q.S.: Travel expenses for the Dementia Care Navigation workgroup meeting were provided by the Alzheimer's Association. National Institute on Aging (funds to institution), BrightFocus Foundation (funds to institution), Centers for Medicare & Medicaid Services (funds to institution), Centene Corporation (funds to institution), Sibley Memorial Foundation (funds to institution). Maryland's Virginia I. Jones ADRD Council, no payments made. S.D.: Travel expenses for the Dementia Care Navigation workgroup meeting were provided by the Alzheimer's Association. NIH R01 AG051715, NIH R01 AGO74710. People Designs Clarity Study, $200 for Delphi panel participation.

References

    1. Bernstein A, Harrison KL, Dulaney S, et al. The role of care navigators working with people with dementia and their caregivers. J Alzheimers Dis. 2019;71(1):45‐55. doi:10.3233/jad-180957 - DOI - PMC - PubMed
    1. McBrien KA, Ivers N, Barnieh L, et al. Patient navigators for people with chronic disease: a systematic review. PLoS One. 2018;13(2). doi:10.1371/journal.pone.0191980 - DOI - PMC - PubMed
    1. Freeman HP. The origin, evolution, and principles of patient navigation. Cancer Epidemiol Biomarkers Prev. 2012;21(10):1614‐1617. doi:10.1158/1055-9965.epi-12-0982 - DOI - PubMed
    1. Alzheimer's Association . 2022 Alzheimer's disease facts and figures. https://www.alz.org/media/Documents/alzheimers‐facts‐and‐figures.pdf
    1. Joling KJ, Janssen O, Francke AL, et al. Time from diagnosis to institutionalization and death in people with dementia. Alzheimer Dement. 2020;16(4):662‐671. doi:10.1002/alz.12063 - DOI - PMC - PubMed