Patient navigation programs for people with dementia, their caregivers, and members of the care team: a scoping review

Abstract

Objective: The main objective of this review was to map the literature on the characteristics of patient navigation programs for people with dementia, their caregivers, and members of the care team across all settings. The secondary objective was to map the literature on the barriers and facilitators for implementing and delivering such patient navigation programs.

Introduction: People with dementia have individualized needs that change according to the stage of their condition. They often face fragmented and uncoordinated care when seeking support to address these needs. Patient navigation may be one way to help people with dementia access better care. Patient navigation is a model of care that aims to guide people through the health care system, matching their unmet needs to appropriate resources, services, and programs. Organizing the available information on this topic will present a clearer picture of how patient navigation programs work.

Inclusion criteria: This review focused on the characteristics of patient navigation programs for people living with dementia, their caregivers, and the members of the care team. It excluded programs not explicitly focused on dementia. It included patient navigation across all settings, delivered in all formats, and administered by all types of navigators if the programs aligned with this review's definition of patient navigation. This review excluded case management programs.

Methods: This review was conducted in accordance with JBI methodology for scoping reviews. MEDLINE, CINAHL, APA PsycINFO, Embase, and ProQuest Nursing and Allied Health databases were searched for published full-text articles. A gray literature search was also conducted. Two independent reviewers screened articles for relevance against the inclusion criteria. The results are presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram, and the extracted data are presented narratively and in tabular format.

Results: Thirty-nine articles describing 20 programs were included in this review. The majority of these articles were published between 2015 and 2020, and based out of the United States. The types of sources included randomized controlled trials, quasi-experimental studies, and qualitative exploratory studies, among others. All programs provided some form of referral or linkage to other services or resources. Most dementia navigation programs included an interdisciplinary team, and most programs were community-based. There was no consistent patient navigator title or standard delivery method. Commonly reported barriers to implementing and delivering these programs were navigator burnout and a lack of coordination between stakeholders. Commonly reported facilitators were collaboration, communication, and formal partnerships between key stakeholders, as well as accessible and flexible program delivery models.

Conclusions: This review demonstrates variety and flexibility in the types of services patient navigation programs provided, as well as in the modes of service delivery and in navigator title. This information may be useful for individuals and organizations looking to implement their own programs in the future. It also provides a framework for future systematic reviews that seek to evaluate the effectiveness or efficacy of dementia navigation programs.

Figure 1

Search results and source selection and inclusion process