Dissertation Defence: Volunteer Navigation in Dementia Care: Adapting Nav-CARE for caregivers of people living with dementia

Madison Huggins, supervised by Dr. Barbara Pesut, will defend their dissertation titled “Volunteer Navigation in Dementia Care: Adapting Nav-CARE for caregivers of people living with dementia” in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Nursing.

An abstract for Madison Huggins’s dissertation is included below.

Examinations are open to all members of the campus community as well as the general public. Please email barb.pesut@ubc.ca to receive the Zoom link for this exam.

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ABSTRACT

With a growing number of people living with dementia, estimates suggest that by 2050 there will be over 1 million informal caregivers in Canada. Dementia navigation programs are emerging interventions used to support people living with dementia and their caregivers. These programs utilize navigators, who are clinically trained and/or supported by interdisciplinary clinical teams, to provide navigational healthcare system and emotional support. This research aimed to adapt Nav-CARE, a volunteer-led navigation program for people with life-limiting illnesses, to support caregivers of people living with dementia. The adaptation process involved three phases: 1) a literature review on caregivers’ needs and existing support programs, 2) a modified e-Delphi study to identify caregivers’ needs and the necessary competencies for volunteer navigators, and 3) a pilot study to evaluate the adapted program’s feasibility and acceptability. Eight themes were developed that reflect interview, questionnaire, and field note data collected throughout the pilot study: 1) Volunteer navigators provide emotional and relational support, 2) Volunteer navigators provide healthcare and legal system navigation support, 3) A deep understanding of dementia and caregiving is required to support the dyad, 4) Caregivers challenges and successes in identifying and addressing their own needs, 5) Complexities of dementia navigation, 6) Relationships are meaningful, 7) Longitudinal, individualized and adaptive support is essential to caregivers, and 8) Listening is a double-edged sword. Collectively, these themes suggest that the adapted Nav-CARE program can support caregivers and people with dementia, but further adjustments are needed. Volunteer navigators require more thorough training on dementia and caregiving to provide adequate emotional and navigational support. Additionally, caregivers should be connected to Nav-CARE early in their caregiving journey to build meaningful relationships with volunteer navigators, address initial challenges, and offer adaptive support as their needs change. Further, these themes emphasize the importance of adopting a holistic view of the caregiving experience as it promotes positive activities for caregivers, helps caregivers identify and address their own needs, and enables volunteer navigators to provide support to the dyad as a whole. This research enhances the dementia navigation literature by broadening the understanding of dementia navigation programs, identifying potential providers of navigational support, and exploring support methods for caregivers and people living with dementia.