Developing a patient navigation program for people with dementia: how a scoping review became a pilot program

Despite an ever-increasing number of people with dementia, providing quality dementia care remains a challenge the world over.^1,2 Accessing and navigating care is often a challenge for people with dementia, caregivers, and the care team alike. Our scoping review in this issue of JBI Evidence Synthesis explored the literature on one possible avenue for improving dementia care: patient navigation programs.³ Patient navigation is a person-centered model of care, in which a “navigator” works with a client to help them navigate the health and social care systems and overcome barriers to access services and resources.^3–5 The client can be a service user, a caregiver, or a member of the care team. In a system where many service users and caregivers struggle with unmet needs, and caregivers and staff experience burnout, patient navigation programs are one way to counter these issues.^6,7

Our scoping review was the initial part of a larger, multicomponent project that ultimately aimed to inform the development and implementation of a patient navigation program in New Brunswick, Canada.⁸ The project also included a national environmental scan to identify the characteristics of existing patient navigation programs for people with dementia of all ages, as well as a provincial needs assessment to explore how such a patient navigation program could be implemented in the New Brunswick context. The outcomes of this project, if successful, will also ideally support the development and implementation of other navigation programs elsewhere in the world, as well as other research on patient navigation programs and their effectiveness for people with dementia. Our project adds to this literature by exploring how patient navigation programs can improve care coordination and integration for this population by collecting measures related to health outcomes, patient and caregiver satisfaction, and quality of life.

Scoping reviews are useful for their ability to organize the vast amounts and diverse range of available evidence to reveal a view of a comprehensive whole.⁹ The scoping review methodology was valuable to our process, as it allowed us to take advantage of research from around the world—across diverse demographic, clinical, and health system contexts—and use it as a foundation for our larger project. As such, our scoping review provided additional detail from multiple and diverse international contexts, as well as relevant sources for the data collection, analysis, and interpretation of the subsequent environmental scan and needs assessment.

The results of this larger, multicomponent project⁸ culminated in the next stage: the development of Navigating Dementia NB (New Brunswick). In March 2022, our research team launched a province-wide pilot program for people with dementia, their carers, and the care team.¹⁰ Six patient navigators work with clients to identify a range of needs and connect clients to appropriate programs and resources across social and health care systems, as well as throughout various levels of care. As discussed in our review,³ access to appropriate services is an important issue for this population. Accessibility to navigators and, in turn, the access they facilitate to the appropriate services and resources are of equal importance in the pilot project. Accordingly, clients do not require a diagnosis to participate and can access navigators through self-referral or referral made by a care provider or the provincial Alzheimer society. Similar to the majority of programs identified in the scoping review,³ Navigating Dementia NB is community-based, with patient navigators embedded within primary care clinics. This program provides interventions that take clients’ personalized situations into account by providing individualized, patient-centered care.¹⁰ A patient and family advisory council provides guidance and oversight for the project to ensure it continues to meet the needs of those accessing its services. The needs assessment revealed that most people preferred navigators to be formally qualified, with a professional, health care–related degree. Navigators all have backgrounds in nursing and social work, like many of the navigators in the programs reported in our review.³

This program received funding for 1 year from the provincial government of New Brunswick and the Public Health Agency of Canada. The research team is seeking additional funding and partnerships to sustain the program beyond this initial period of support. Our experience reflects one issue that emerged in our scoping review concerning funding. When available, funding is a facilitator,³ but when unavailable, it was reported as a barrier to patient navigation programs as a whole.¹¹ A lack of funding is also a challenge for dementia care in general. Dementia already has an immense financial impact on families, health systems, and countries around the world. In 2015, the estimated cost of dementia accounted for 1.1% of the world’s gross domestic product, which was more than USD$800 billion.¹² A diagnosis of dementia inevitably leads to expenses that must be paid by older people and their caregivers, often without reimbursement.¹³ Indeed, a lack of funding is a commonly reported barrier preventing patients from accessing care.¹⁴ This is despite a recognized need for sustainable, reliable, and long-term funding to improve the lives of people with dementia, their caregivers, and care providers. The World Health Organization has called for sustainable funding for dementia care,¹⁵ and more reliable and continuous funding for dementia research specifically.¹

Our scoping review was a key component of our project. The results of the review helped lay the foundation for and fully inform the subsequent research, and supported the implementation of the pilot patient navigation program. It also highlighted overarching and systemic challenges that the research team—and others working on patient navigation and dementia—face around the world.