Volunteer navigation in dementia care : adapting Nav-CARE for caregivers of persons living with dementia

This research aimed to adapt Nav-CARE (Navigation - Connecting, Advocating, Resourcing, Engaging), a volunteer-led navigation program for people with life-limiting illnesses, to support caregivers of persons living with dementia and assess the feasibility of doing so. This research took place over three distinct phases: 1) a review of the literature regarding caregivers' needs, existing support programs, and dementia navigation programs; 2) Study One: a modified e-Delphi study to identify caregivers' needs and the competencies volunteer navigators (VN) need to be trained in to support caregivers to meet these needs; and 3) Study Two: a pilot feasibility study to evaluate the feasibility of adapting the Nav-CARE program. Study One established two comprehensive lists: 1) caregivers’ needs and 2) VN competencies. These lists informed the development of the VN training manual used in Study Two. Study Two utilized VN self-perceived confidence questionnaires, VN visit reports, and semi-structured interviews with caregivers and VN to evaluate four key feasibility domains: 1) assessment procedures, 2) implementation resources, 3) intervention delivery, adherence, and safety, and 4) acceptability. Collectively, findings suggest that it is feasible to adapt the Nav-CARE program to support caregivers and people with dementia, but further adjustments are needed to improve the program’s delivery, adherence, and acceptability. The high response rates and complete data from the questionnaire demonstrate that this assessment procedure was both effective and acceptable. Similarly, the semi-structured interviews, in which all eligible participants participated, and data saturation was reached, were effective and acceptable. However, visit reports were completed infrequently and, when submitted, often lacked thoroughness. Specific findings highlighted that the program was meaningful to caregivers and VN. They developed strong relationships, and VNs provided emotional and relational support, as well as some healthcare and legal system navigation support. Some caregivers found the emotional and relational support valuable, while others felt it inadequate. Many caregivers desired increased navigation support. The lack of navigation support provided by VNs may be attributed to their inadequate knowledge of dementia and caregiving, which both VNs and caregivers noted as barriers. Increased knowledge could lead to better program delivery, adherence, and acceptance.