Health and Social Development, Faculty of (Okanagan)
Nursing, School of (Okanagan)
DSpace
UBCO
Smith, Madison
Doctor of Philosophy - PhD
University of British Columbia
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) caregiversâ 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 programâs 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.
Volunteer Navigation in Dementia Care: Adapting Nav-CARE for caregivers of persons living with dementia by Madison Smith MPH, Simon Fraser University, 2018 BA Hons, University of Saskatchewan, 2016 A DISSERTATION SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF Doctor of Philosophy in THE COLLEGE OF GRADUATE STUDIES (Nursing) THE UNIVERSITY OF BRITISH COLUMBIA (Okanagan) February 2025 © Madison Smith, 2025 ii The following individuals certify that they have read, and recommend to the College of Graduate Studies for acceptance, a dissertation entitled: Volunteer Navigation in Dementia Care: Adapting Nav-CARE for caregivers of persons living with dementia submitted by Madison Smith in partial fulfillment of the requirements of the degree of Doctor of Philosophy. Dr. Barbara Pesut, Faculty of Health and Social Development Supervisor Dr. Kathy Rush, Faculty of Health and Social Development Supervisory Committee Member Dr. Caitlin McArthur, Faculty of Health Supervisory Committee Member Dr. Colin Reid, Faculty of Health and Social Development University Examiner Dr. Carrie McAiney, Faculty of Health External Examiner iii Abstract 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) caregiversâ 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 programâs 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 iv 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. v Lay Summary Navigation programs support people with life-limiting illnesses in navigating the healthcare system and connecting to existing community resources. Recently, these programs have been used to support persons living with dementia and their caregivers. This research evaluated the feasibility of adapting an existing volunteer-led navigation program, Nav-CARE (Navigation - Connecting, Advocating, Resourcing, Engaging), to support caregivers of persons living with dementia. Findings from this research suggest that it is feasible to adapt Nav-CARE, but some adjustments are needed to improve the adaptation. Specifically, volunteer navigators require thorough training and a deep understanding of caregiving and dementia in order to provide adequate support. Findings can contribute to informing the development and administration of dementia navigation programs, which may improve the caregiving experience and, subsequently, the lives of persons living with dementia. As this research evaluated the feasibility of adapting the program, future research should focus on understanding its effectiveness and impact. vi Preface This dissertation is an extension of Dr. Barbara Pesutâs research on developing and expanding the Nav-CARE program within different disease contexts. This dissertation was funded in part by a contribution from Health Canada. Madison was supported by the Nav-CARE team and supervisory committee throughout the research design and analysis. Ethics approval was provided from the University of British Columbia Okanagan Behavioural Research Ethics Board. The ethics approval number pertaining to this research is H21-00067. Two publications were developed based on this research (Huggins et al., 2023; Huggins et al., 2024). Generative AI was not used in any way for any aspect of this work. vii Table of Contents Abstractâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...iii Lay Summaryâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦v Prefaceâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦vi Table of Contentsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦....vii List of Tablesâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...xv List of Figuresâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..xvi Glossaryâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..â¦xvii Acknowledgementsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...â¦xviii Dedicationâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...xix Chapter 1: Introduction and Backgroundâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...â¦1 1.1 Guiding Frameworksâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.4 1.1.1 Person-Centered Careâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.5 1.1.2 Relationship-Centered Careâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦7 1.2 Purpose Statementâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.8 Chapter 2: Literature Reviewâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..9 2.1 Caregiver Needsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.9 2.1.1 Personal Health and Wellbeing Needsâ¦â¦â¦â¦..â¦â¦â¦â¦â¦â¦.â¦â¦â¦..10 2.1.1.1 Depression and Anxietyâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.10 2.1.1.2 Physical Healthâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.11 2.1.1.3 Strong Relationshipsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..13 2.1.1.4 Lack of Spare Timeâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...14 viii 2.1.2 Information Needsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...14 2.1.2.1 Knowledge of Dementiaâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦15 2.1.2.2 Social Network Knowledgeâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..15 2.1.2.3 Provider Knowledgeâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.16 2.1.3 Formal Supportâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦17 2.1.3.1 Barriers to Accessing Servicesâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...17 2.1.3.2 Issues with Existing Servicesâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦ 18 2.1.3.3 Issues with Services for Persons Living with Dementiaâ¦â¦...â¦.20 2.1.4 Summaryâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...20 2.2 Rapid Review: Interventions for Caregivers of Persons Living with Dementiaâ¦.....24 2.2.1 Methodsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.21 2.2.2 Interventions for Caregivers of Older Adults Living with Dementiaâ¦â¦..23 2.2.2.1 Burdenâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦24 2.2.2.2 Depression and Anxietyâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦....26 2.2.2.3 Health and Well-Beingâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.â¦.27 2.2.2.4 Social Outcomesâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦28 2.2.2.5 Knowledge and Skillsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...â¦.29 2.2.2.6 Quality of Lifeâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...29 2.2.2.7 Healthcare Services Utilizationâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.30 2.2.3 Summaryâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..31 2.3 Navigation Programs in Dementia Careâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.33 2.3.1 The Care Ecosystem Navigation Programâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...37 2.3.1.1 Impactsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..38 ix 2.3.1.2 Facilitators and Barriersâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦40 2.3.2 Nav-CARE: A Volunteer Navigation Program for Older Adultsâ¦â¦â¦â¦42 2.3.2.1 Nav-CARE Adaptationâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.43 2.4 Literature Review Summaryâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...45 Chapter 3: Studiesâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...47 3.1 Introduction: Study One and Study Twoâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.47 3.2 Ethicsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦47 3.3 Study One: Modified E-Delphi Studyâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..48 3.3.1 Methodsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.49 3.3.1.1 Sample and Recruitmentâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦49 3.3.2 Data Collection and Analysisâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦50 3.3.2.1 First Questionnaireâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.51 3.3.2.2 Second Questionnaireâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦52 3.3.2.3 Third Questionnaireâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..52 3.3.3 Findingsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...53 3.3.3.1 First Questionnaire: Caregiversâ Needsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦54 3.3.3.2 Second Questionnaire: Knowledge, Skills and Abilitiesâ¦â¦â¦...60 3.3.3.3 Third Questionnaire: Appropriateness of Competenciesâ¦â¦â¦...64 3.3.3.4 Final Needs and Competencies Statementsâ¦â¦â¦â¦â¦â¦â¦â¦70 3.3.4 Discussionâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦71 3.3.4.1 Developing Knowledge of Dementia and Dementia Stigmaâ¦â¦72 3.3.4.2 Supporting the Care-Dyadâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦75 3.3.4.3 Identifying and Assisting with Accessing Healthcare Servicesâ¦77 x 3.4 Curriculum Developmentâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.78 3.5 Study Two: Pilot Feasibility Studyâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..â¦â¦â¦â¦â¦â¦...80 3.5.1 Methodsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.81 3.5.1.1 Research Contextâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...86 3.5.1.2 Recruitment and Consentâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..87 3.5.1.3 Volunteer Trainingâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦89 3.5.1.4 Interventionâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦89 3.5.2 Data Collection and Analysisâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...90 3.5.2.1 Volunteer Navigator Experience and Self-Perceived Confidence Questionnaire â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..â¦â¦..91 3.5.2.2 Volunteer Navigator Visit Reportsâ¦â¦â¦..â¦â¦â¦â¦â¦â¦â¦â¦.93 3.5.2.3 Volunteer Navigator and Caregiver Semi-Structured Interviews..94 3.5.3 Findingsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦99 3.5.3.1 Volunteer Navigator Characteristicsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.100 3.5.3.2 Caregiver Characteristicsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.102 3.5.3.3 Volunteer Navigator Experiences and Self-Perceived Confidence Questionnaireâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...103 3.5.3.4 Volunteer Navigator Visit Reportsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.109 3.5.3.4.1 Qualitative Responsesâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..110 3.5.3.4.1.1 Successful Visitsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦110 3.5.3.4.1.2 Challenges and Barriersâ¦â¦â¦â¦â¦â¦â¦â¦.111 3.5.3.4.1.3 Volunteer Navigator Learningâ¦â¦â¦â¦â¦..112 3.5.3.4.1.4 Services Provided by Volunteer Navigators.113 xi 3.5.3.4.1.5 Challenges Raised by Caregiversâ¦â¦â¦â¦..114 3.5.3.4.1.6 Caregiversâ Remaining Unmet Needsâ¦â¦...116 3.5.3.4.1.7 Volunteer Navigatorsâ Follow-Up Planâ¦â¦116 3.5.3.5 Volunteer Navigator and Caregiver Semi-Structured Interviewsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦122 3.5.3.5.1 Semi-Structured Interview Themesâ¦â¦â¦â¦â¦â¦â¦..125 3.5.3.5.1.1 Volunteer Navigators Provide Emotional and Relational Supportâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...125 3.5.3.5.1.2 Volunteer Navigators Provide Healthcare and Legal System Navigation Support â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..128 3.5.3.5.1.3 A Deep Understanding of Dementia and Caregiving is Required to Support the Dyadâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..131 3.5.3.5.1.4 Caregivers Challenges and Successes in Identifying and Addressing Their Own Needsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦135 3.5.3.5.1.5 Complexities of Dementia Volunteer Navigationâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦139 3.5.3.5.1.6 Relationships are Meaningfulâ¦â¦â¦â¦â¦...142 3.5.3.5.1.7 Longitudinal, Individualized and Adaptive Support are Essential to Caregiversâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦144 3.5.3.5.1.8 Listening is a Double-Edged Swordâ¦â¦â¦.147 3.5.4 Discussion: Study Twoâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..150 3.5.4.1 Volunteer Navigators Can Provide Emotional, Relational and Navigational Supportâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦151 xii 3.5.4.2 Volunteer Navigators Require a Deep Understanding of Dementia and Caregivingâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦153 3.5.4.3 The Importance of an Early Connection Between Nav-CARE and Caregiversâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..156 3.5.4.4 Recognizing a Holistic View of the Caregiving Experienceâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦157 3.5.4.5 Supporting the Dyadâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦159 3.5.5 Summary: Study One and Study Twoâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦160 3.5.6 Limitations: Study One and Study Two â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.162 3.5.7 Implications for Policy, Practice and Researchâ¦â¦â¦â¦â¦â¦â¦..164 3.5.8 Conclusionâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..167 Referencesâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..169 Appendicesâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.185 Appendix A: Tablesâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦185 A.1 Table 1: Rapid Review Search Strategyâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.â¦..185 A.2 Table 2: Rapid Review Inclusion and Exclusion Criteriaâ¦â¦â¦â¦â¦â¦.....185 A.3 Table 3: Rapid Review Intervention Categoriesâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...186 A.4 Table 4: Rapid Review Outcome Categoriesâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦187 A.5 Table 5: E-Delphi Final Caregiversâ Needs Categories and Statementâ¦â¦187 A.6 Table 6: E-Delphi Final Competency Categories and Statementsâ¦â¦â¦....191 Appendix B: Figuresâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦194 xiii B.1 Figure 1: Rapid Review Prisma Flow Diagramâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦194 B.2 Figure 2: E-Delphi Panelist Recruitment Postcardâ¦â¦â¦â¦â¦â¦â¦â¦â¦...195 Appendix C: Supplementary Materialâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.196 C.1 E-Delphi Consent Formâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦196 C.2 E-Delphi Panelist Recruitment Script...........................................................196 C.3 E-Delphi Panelist Characteristics Questionnaireâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..197 C.4 E-Delphi First Questionnaireâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦199 C.5 E-Delphi Second Questionnaireâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦207 C.6 E-Delphi Third Questionnaireâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...212 C.7 Pilot Feasibility Study Caregiver Recruitment Scriptâ¦..â¦â¦â¦â¦â¦â¦â¦.223 C.8 Pilot Feasibility Study Caregiver Information Sheetâ¦â¦â¦â¦â¦â¦..â¦â¦..223 C.9 Pilot Feasibility Study Volunteer Navigator Recruitment Script.â¦â¦â¦â¦.224 C.10 Pilot Feasibility Study Volunteer Navigator Information Sheetâ¦â¦â¦.....225 C.11 Pilot Feasibility Study Caregiver Consent Formâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.225 C.12 Pilot Feasibility Study Volunteer Navigator Consent Formâ¦â¦â¦â¦â¦...230 C.13 Pilot Feasibility Study Volunteer Navigator Experience and Self-Perceived Confidence Questionnaireâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦234 C.14 Pilot Feasibility Study Volunteer Navigator Visit Reportsâ¦â¦â¦..â¦â¦...240 C.15 Pilot Feasibility Study Volunteer Navigator Midpoint Interview Guideâ¦245 xiv C.16 Pilot Feasibility Study Volunteer Navigator Endpoint Interview Guideâ¦245 C.17 Pilot Feasibility Study Caregiver Midpoint Interview Guideâ¦â¦â¦.â¦....246 C.18 Pilot Feasibility Study Caregiver Endpoint Interview Guideâ¦â¦â¦â¦.....247 C.19 Consolidated Criteria for Reporting Qualitative Research (COREQ) Checklistâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..248 xv List of Tables Table 1: E-Delphi Panelist Characteristicsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦53 Table 2: E-Delphi Consensus on Caregiversâ Needsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.55 Table 3: E-Delphi Examples of Panelist Responses Influencing Competency Developmentâ¦...62 Table 4: E-Delphi Consensus on Volunteer Navigator Competenciesâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..65 Table 5: E-Delphi Volunteer Navigator Training Modules and Learning Objectiveâ¦â¦â¦â¦â¦79 Table 6: Feasibility Domains and Definitionsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...81 Table 7: Feasibility Domains and Data Collection Toolsâ¦â¦.â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦...â¦....83 Table 8: Data Collection Tools and Corresponding Timepointsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.....91 Table 9: Pilot Feasibility Study Volunteer Navigator Characteristicsâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.102 Table 10: Pilot Feasibility Study Volunteer Navigator Experience and Self-Perceived Confidence Questionnaire Responsesâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.105 Table 11: Volunteer Navigator Visit Reports Responsesâ¦â¦..â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦..117 Table 12: Final Themes, Feasibility Domains, and Codesâ¦â¦â¦â¦â¦â¦â¦.â¦â¦â¦â¦â¦â¦â¦.123 xvi List of Figures Figure 1: Pilot Feasibility Study Participant Flow Chartâ¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦â¦.101 xvii Glossary 1. Caregivers/care-partners/informal caregivers: These terms are often used interchangeably and all refer to individuals who provide unpaid assistance, support, and care to someone living with dementia. A caregiver provides various levels of physical, emotional, and practical support to someone with dementia, often assisting with activities of daily living (ADLs), managing medications, coordinating medical appointments, and offering companionship. The caregiving role is often collaborative as the caregiver and the person living with dementia work together as partners in managing the condition and maintaining quality of life. 2. The dyad/the care-dyad: These terms are often used interchangeably and refer to the relationship and interaction between the person living with dementia and their caregiver. This relationship is characterized by interconnected needs, and the dynamic exchange of care, support, and communication between them. xviii Acknowledgements This work was conducted under the supervision of Dr. Barbara Pesut at the University of British Columbia Okanagan. Committee members Dr. Kathy Rush and Dr. Caitlin McArthur provided invaluable guidance and support through their expertise. Dr. Gloria Puurveen offered both professional and personal guidance throughout the process. Each of these individuals made significant contributions to the publication of multiple articles associated with this research. I extend my sincerest gratitude to them all. xix Dedication To my Grandma Lee, who introduced me to the realities of Dementia, and all the wonderful grandparents just like her. 1 Chapter 1: Introduction and Background The Canadian healthcare system is facing one of its greatest challenges as projections suggest that by 2030, 21.3% - 22.9% of the population will be 65 and older (Statistics Canada, 2022). Aging adults can struggle with several serious health conditions, including dementia. Dementia is a neurodegenerative disorder for which there is no current cure (Fessel, 2024). Dementia is an umbrella term for several diseases, the most common of which is Alzheimerâs disease (Chambers, 2021). Symptoms of dementia vary but the condition typically impacts oneâs ability to remember, think, or make decisions to the extent that it interferes with daily tasks and activities (Chambers, 2021). For example, persons living with dementia may experience challenges with communication, memory, attention, reasoning and problem-solving, and visual perception beyond what is typical for their age (Chambers, 2021). Dementia is not a normal part of aging (Chambers, 2021). By 2030, approximately one million Canadians are expected to be living with dementia (Alzheimer Society of Canada, 2022), with the economic impact of the condition in Canada projected to reach $293 billion by 2040 (Feldman & Estabrooks, 2017). The many costs associated with this complex condition are estimated to total $8. However18 billion USD globally (Alzheimerâs Disease International, 2015). However, current healthcare expenditures are not enough to address the needs across all regions of the world (Alzheimerâs Disease International, 2010). As such, national and international change is needed. Persons living with dementia require support from a multitude of interdisciplinary professionals, as well as informal caregivers, who are pillars of the dementia care community. Informal caregivers, also referred to interchangeably as caregivers or care partners, are those who provide unpaid care and support to persons living with dementia (Bunn et al., 2016). 2 Caregivers can be family members, neighbours, and/or friends of persons living with dementia. In high and middle-income countries, such as Canada, approximately 60% of caregivers are the female spouses, or middle-aged daughters of the person living with dementia (Bunn et al., 2016). Estimates suggest that by 2050, there will be over 1 million caregivers in Canada providing approximately 1.4 billion hours of support, which is equivalent to 690,000 full-time jobs (Alzheimer Society of Canada, 2022). Caregivers support persons living with dementia with a variety of tasks including cooking, cleaning, maintaining personal hygiene, managing medications, financial management, and care coordination among others (Karana & Paun, 2023). When compared to caregivers of individuals with other chronic diseases, caregivers of persons living with dementia have a higher level of unmet needs and lower utilization of available services (Bressan et al., 2020), more family conflict and personal stress, serious health problems, severe burnout and an overall shorter life expectancy (Brown & Chen, 2008). Further, caregivers often struggle with depression (Bressan et al., 2020; Cheng et al., 2020), financial concerns, low quality of life (Bressan et al., 2020), anxiety, and cardiovascular diseases (Cheng et al., 2020), among other challenges. These factors have contributed to caregiversâ insightful label of the invisible second patient (Bressan et al., 2020). The importance of supporting caregivers is recognized in The World Health Organization (WHO) Dementia Action Plan and the National Dementia Strategy in Canada, which explicitly highlight support for dementia caregivers as a priority action area (Public Health Agency of Canada, 2019; World Health Organization, 2017). Although research has focused on understanding caregivers' needs and evaluating the effectiveness of existing support programs, caregivers highlight the need for a deeper understanding of the realities of caregiving and more adequate support (Alzheimer Society of Canada, 2022). A range of interventions have been developed to support caregivers and address 3 these inadequacies. Common interventions include support groups, befriending, information sessions, exercise classes, and care coordination (Huggins et al., 2023). These various interventions intend to address a multitude of outcomes, including burden, depression and anxiety, health and well-being, quality of life, knowledge and skills, social outcomes, and healthcare services utilization (Huggins et al., 2023). In recent years, there has been an increase in the development and use of navigation-based interventions in dementia care (Amjad et al., 2018; Backhouse et al., 2017; Bernstein et al., 2020; Black et al., 2019; Zwingmann et al., 2017). Navigation programs focus on establishing a relationship between a navigator and a client, in which clients receive a variety of supports to meet their personal and healthcare needs (e.g., care coordination and social support) (Bernstein et al., 2019). Many navigation programs provide support directly to persons living with dementia and evaluate subsequent impacts; as such, caregivers become of secondary focus (Amjad et al., 2018; Backhouse et al., 2017). These programs have contributed to various impacts, including decreased healthcare utilization, increased utilization of community resources and outpatient dementia/mental health supports (Amjad et al., 2018), and improved behaviors of persons living with dementia (Backhouse et al., 2017) and caregiver burden (Backhouse et al., 2017; Black et al., 2019; Zwingmann et al., 2017). Focusing on caregivers within navigation programs can amplify their voices, helping deepen our understanding of their needs and the importance of their role, ultimately leading to more adequate support (McCabe et al., 2016). Nav-CARE (Navigation - Connecting, Advocating, Resourcing, Engaging) is an evidence-based volunteer-led navigation program that supports individuals in the community who are living with declining health. Nav-CARE utilizes trained, experienced and mentored volunteer navigators who engage in consistent visits with clients in their homes or over the 4 phone throughout their illness journey (Pesut et al., 2022). Volunteers are trained on various topics including how to address quality of life needs, advocate for clients and families, facilitate community connections, and promote active engagement (Pesut et al., 2020; Pesut et al., 2022). Through consistent visits, relationship building takes place, and clients can be supported with present and future planning and decision-making, provided with a social safety net, and encouraged to engage with life (Pesut et al., 2020). Implementing the original Nav-CARE program has contributed to several positive impacts for both volunteers and clients, including volunteers finding their role satisfying and meaningful and clients highlighting that volunteers improved their decision-making, social support, and access to resources (Pesut et al., 2020). Caregivers of persons living with dementia may benefit from such support. Therefore, it is important to understand the feasibility of adapting the Nav-CARE program to support caregivers of persons living with dementia. 1.1 Guiding Frameworks Emphasis on the importance of caregivers has been influenced by conceptualizations of two key frameworks in dementia care: person-centered care (PCC) (including the concept of personhood), and relationship-centered care (RCC) (De Witt & Fortune, 2019). Personhood is a key concept embedded within PCC, which emphasizes the shared principles of providing care that respects the needs, desires, identity, agency and independence of persons living with dementia, acknowledgers the socio-cultural influences that impact them, and actively involves individuals in care decision-making (Hennelly & OâShea, 2022; Keady & Nolan, 2020; OâConnor et al., 2007). Respecting personhood is often a central consideration in the development of supportive programs (Hennelly & OâShea, 2022; OâConnor et al., 2007). RCC 5 emphasizes relationships and interactions among persons living with dementia and those in their networks of care, and suggests these are essential to understanding dementia, the foundation of therapeutic and healing activities, and fundamental to providing adequate support to those impacted by the condition (Allison et al., 2019; Nolan et al., 2004). RCC has increased attention to the importance of caregivers, care in community settings, and consideration of the spiritual, social, and relational ramifications of caring for someone with dementia (Penrod et al., 2007). Therefore, understanding the person-centered care and relationship-centered care frameworks in relation to dementia care is essential to developing adequate interventions to support caregivers. 1.1.1 Person-Centered Care (PCC) For decades, dementia care was primarily institutional, biomedical, deficit-based, and medical treatment focused as patients were understood as being supported with a âliving deathâ (Keady & Nolan, 2020). As a result, the unique personal stories of patients were not considered in the provision of health care services, and there was little consideration of the potential of evidence-based psychosocial interventions as these aspects of dementia were not considered relevant (Keady & Nolan, 2020). Unsurprisingly, this led to the experience of infantilization, stigmatization, and objectification of persons living with dementia (Keady & Nolan, 2020). In response, a paradigm shift towards PCC emerged. The concept of PCC first garnered recognition when it was put forth as a social theory of personhood in dementia by Dr. Tom Kitwood in the 1980âs (Keady & Nolan, 2020). PCC suggests that dementia care must honour and value the personhood of every individual living with dementia. To accomplish this, the person living with dementia must be at the centre of their 6 own care and be supported, facilitated, and enabled to contribute to it (Mitchell & Agnelli, 2015). Essential components to the success of this are shared decision making, equality of communication and equal and mutual respect regardless of cognitive abilities (Mitchell & Agnelli, 2015). PCC recognized and valued the agency of each individual with dementia thereby enhancing the moral and ethical aspects of dementia care. These principles were adopted as best practice by many healthcare disciplines and had such a profound influence that it informed the development of a person-centered nursing framework in contexts beyond dementia care (McCormack & McCrance, 2021). While the widespread adoption of PCC helped to broaden knowledge regarding the nature of the disease and experiences of those with dementia, gaps contributed to tangible consequences as the healthcare system continued to have issues with delivery and struggled to meet the needs of persons living with dementia (Nolan et al., 2004). In the 21st century, researchers, clinicians, and people with lived experience began to recognize the need to acknowledge, value and understand the impacts of relationships among all involved in dementia care. This challenged epistemological assumptions that underpinned the imbalanced valuing of independence over dependence and interdependence, which was central to the PCC paradigm (Keady & Nolan, 2020). This imbalance resulted in the failure to acknowledge the role of relationships among triads (i.e., the person living with dementia, caregiver, and healthcare provider) in the provision of care, the importance of reciprocal relationships, the intricacies and interdependencies of caring relationships, and broader social phenomena including gender, culture, and other factors (Adams & Gardiner, 2005; Nolan et al., 2004). As such, emphasis on the organizational and societal factors that conflict with individualistic approaches to healthcare grew (De Witt & Fortune, 2019; McCormack, 2001; Nolan et al., 2004). 7 1.1.2 Relationship-Centered Care (RCC) The RCC paradigm developed in response to gaps in PCC. RCC values personal autonomy and individual factors while also emphasizing the dynamic and relational aspects of care (Wyer et al., 2014). As such, RCC suggests relationships and interactions among persons living with dementia and those in their networks of care are the foundation of therapeutic and healing activities, essential to understanding dementia, and fundamental to providing adequate support to those impacted by the disease (Allison et al., 2019; Nolan et al., 2004). The RCC paradigm is influenced by the social constructivist perspective that values relationships and suggests that health care encounters are a process of interpreting and constructing a subjective world where each individual and their perspectives are changed through the process of interaction (Nolan et al., 2004). This highlights both the individual and societal roles. Adoption of the RCC paradigm increased attention to the importance of caregivers, community settings rather than institutional, and consideration of the spiritual, social, and relational ramifications of caring for someone with dementia (Penrod et al., 2007). Conceptualizations of dementia that include caregivers are essential as the interconnectedness of caregivers and persons living with dementia is profound (Brites et al., 2020). For example, caregiver depression rather than symptoms of persons living with dementia, has predicted an increase in emergency department use for persons living with dementia (Livingston et al., 2020, p. 435). The increased influence of RCC in dementia care may contribute to improvements in the provision of care by emphasizing caregiversâ needs and informing the development of supportive interventions that consider the intricacies, challenges, and human components of supporting a person living with dementia. 8 1.2 Purpose Statement The purpose of this research is to adapt the existing Nav-CARE program to meet the needs of caregivers of persons living with dementia using a three-step approach: 1) a review of the literature regarding caregiversâ needs, existing programs to meet their needs, and navigation programs in dementia care, 2) a modified e-Delphi study to develop training curriculum for volunteer navigators, and 3) a pilot feasibility study to evaluate the adapted program. Understanding the feasibility of adapting the Nav-CARE program to support caregivers of persons living with dementia will help inform future implementation of the adapted program at existing Nav-CARE sites and future research to evaluate the effectiveness of the adapted program. Further, this work may improve the quality of life of caregivers of persons living with dementia by establishing an individualized intervention that can meet their diverse and changing needs throughout the caregiving journey. Finally, this research may also contribute to expanding conceptualizations of the application of the navigation model within dementia care by exploring who can provide navigational support (i.e., volunteers, healthcare providers, and multidisciplinary teams) and what support can be provided. 9 Chapter 2: Literature Review A review of the literature is provided in three distinct sections 1) the needs of caregivers of persons living with dementia, 2) a rapid review of interventions to support caregivers of persons living with dementia, and 3) navigation programs in dementia care. To evaluate the feasibility of adapting the Nav-CARE program to support caregivers of persons living with dementia, it is essential to understand caregiversâ unmet needs and the efficacy of existing interventions intended to meet their needs. Further, examining existing navigation programs in dementia care is essential as it can provide insight into best models and practices and key barriers and impacts that can be considered when adapting the Nav-CARE program. 2.1 Caregiver Needs There are a multitude of needs that arise for caregivers of persons living with dementia due to the nature of their role. The extent to which these needs are met directly affects their capacity to remain effective caregivers, and happy and healthy individuals. While some needs are addressed through existing supports, a multitude remain fully or partially unmet. For example, some studies indicate that caregivers have a range of one to twelve unmet needs at any given time (Black et al., 2019; Morrisby et al., 2019). Various qualitative and quantitative measures have been used to understand caregiversâ unmet needs including cross-sectional quantitative studies (Black et al., 2019), cross sectional mixed-methods studies using semi-structured interviews and/or questionnaires (De Cola et al., 2017; Tatangelo et al., 2018), systematic reviews (McCabe et al., 2016), interpretive description (Morrisby et al., 2019), and validated tools such as the Family Caregivers Support Agreement (FCSA) (Ducharme et al., 10 2014). General needs are consistent across different settings and caregiver demographics. However, the specific needs are dynamic and individual as they vary based upon stages of dementia, age of the caregiver, the relationships between caregivers and persons living with dementia (Ducharme et al., 2014), and environmental factors among others (Morrisby et al., 2019). To adequately address these needs, complex multicomponent interventions that utilize a personalized approach are required (Black et al., 2019; Morrisby et al., 2019; Tatangelo et al., 2018). Three themes that outline caregiversâ unmet needs were identified in the literature and will guide this discussion: 1) personal health and wellbeing needs, 2) information needs, and 3) formal support needs. 2.1.1 Personal Health and Wellbeing Needs Caregivers have identified several unmet needs that relate to their personal health. While these specific needs relate to the caregiver as an individual outside of their role, their desire to meet these needs is often rooted in their determination to continue serving as a caregiver as opposed to achieving a personal higher quality of life (McCabe et al., 2016). While caregiversâ specific mental and physical health needs have some variation they all relate to the general themes of depression and anxiety, physical health, strong relationships, and lack of spare time. 2.1.1.1 Depression and Anxiety. High levels of psychological distress, experienced in the form of depressive symptoms and anxiety, are expressed by approximately 60% of caregivers of persons living with dementia (Han, 2022). This can manifest in mental health challenges related to depression and anxiety, which include experiencing low self-worth, feeling overwhelmed, hopeless, lonely, isolated, 11 worried (Tatangelo et al., 2018), and stressed (De Cola et al., 2017; Ducharme et al., 2014; Tatangelo et al., 2018). The prevalence of these conditions is staggering. For example, a longitudinal study examining the development of depression and anxiety disorders in caregivers of persons living with dementia, who did not have a disorder at baseline, revealed that 59.7% of caregivers developed a depression and/or anxiety disorder within a two-year period (Joling, 2015). These conditions may already be addressed through the multitude of interventions for caregivers that directly address depression and anxiety. However, caregivers tend to neglect their own needs to focus on the needs of the person living with dementia (Tremont, 2011), which can have profound impacts on their own mental health. Further, caregivers have reported lower levels of health-related quality of life (HRQL) when they perceived the person living with dementia to have high levels of unmet needs (Wammes et al., 2023). This is a complex issue that highlights the interconnectedness of needs among caregivers and persons living with dementia. Finding ways to improve caregivers' mental health is important as caregivers are often unable to meet their own mental health needs as they lack the available time to attend to them and access support (Black et al., 2019; Ducharme et al., 2014). 2.1.1.2 Physical Health. Attention to physical health is essential as all aspects of health are interconnected, and caregivers with poor physical health are more susceptible to the negative psychological impacts of caregiving (Furlong & Wuest, 2008; Joling et al., 2015). For example, a combination of poor physical health, lower life satisfaction, and high degrees of depression and anxiety are associated with higher caregiver burden, which further exacerbates negative experiences of caregiving and low quality of life (Liu, 2017). Further, when caregiversâ physical health is neglected, they may 12 develop symptoms such as high blood pressure, hypertension, hyperglycemia, and weight gain, among others (Furlong & Wuest, 2008). Despite this, caregivers note that maintaining their physical health and preventing the worsening of old and new chronic conditions is often the most neglected aspect of their health (McCabe et al., 2016; Tatangelo et al., 2018). Factors contributing to this neglect include the frequent inability to engage in healthy practices such as cooking nutritious meals and exercising due to time constraints (McCabe et al., 2016; Tatangelo et al., 2018). Caregivers have expressed concern that if their physical needs remain unmet, they may experience worsening of old chronic conditions, the onset of acute health challenges, the development of new chronic conditions, and subsequently increased worry and stress (McCabe et al., 2016; Tatangelo et al., 2018). Despite this, caregivers often have low recognition of their physical health needs and are instead focused on their psychosocial needs (Ducharme et al., 2014). Compromised physical health also limits their capacity to engage in activities that bring them joy, as well as provide care to their loved one. This is important to consider as many caregivers are spouses of persons living with dementia (Tatangelo et al., 2018) and, therefore, may be older adults struggling with their own physical and mental challenges. For example, a caregiver reported that she did not have a driverâs license and was unable to push the wheelchair of a person living with dementia (Munkejord et al., 2020). As a result, they were both confined to their home for several weeks at a time and did not leave the home together for several years (Munkejord et al., 2020). The physical challenges associated with learning how to be a caregiver are often described by caregivers as âphysically drainingâ (Furlong & Wuest, 2008). 13 2.1.1.3 Strong Relationships. The development and maintenance of strong and supportive relationships among caregivers, the person living with dementia, family and friends, and wider social circles is an essential component of positive mental health for caregivers. When caregivers lack strong relationships, they experience isolation, loneliness, and depression among other negative emotions (McCabe et al., 2016; Morrisby et al., 2019). As a result, caregivers have a desire for their extended social circles, which includes those who are not working with persons living with dementia, to receive information on dementia and guidance regarding how to engage in conversations about dementia (McCabe et al., 2016). Several important factors contribute to establishing and maintaining supportive relationships. For example, caregivers have identified that love, tolerance, humor, patience, and the ability to work together as a team are essential for a strong relationship between themselves and the person living with dementia (McCabe et al., 2016; Morrisby et al., 2019). Caregivers also recognize that friends who have an understanding of dementia can serve as a sounding board and provide them with a sense of normalcy (Morrisby et al., 2019). For example, spousal caregivers with friends providing similar care view their relationship as a needed support that has positive impacts on their well-being (Morrisby et al., 2019). As such, caregivers and persons living with dementia can engage with people who understand, on a deep level, the uniqueness of their situation. When caregivers interact with individuals who do not have an understanding of dementia, the development of strong relationships is often limited. For example, the stigma of dementia sometimes carries judgment from friends, family and co-workers, which contributes to distancing between caregivers and their social groups and limits caregiversâ willingness to access 14 support (McCabe et al., 2016; Morrisby et al., 2019). Fear of sharing the dementia diagnosis within social circles causes caregivers to feel âpart of the actâ and leads to avoidance of social events and hiding of the disease (Munkejord et al., 2020). 2.1.1.4 Lack of Spare Time. Caregivers require adequate spare time to maintain their health and wellbeing and have noted the need for support that increases their amount of spare time (Black et al., 2019). Conflicting demands resulting from their multitude of roles as caregivers, employees, bosses, mothers, fathers, sisters, brothers, and friends limits caregiversâ spare time and prohibits their ability to take care of themselves. Caregivers note that a lack of spare time contributes to their inability to engage in adequate physical and social activities including healthy meal prep, hobbies, important day-to-day tasks (Morrisby et al., 2019; Tatangelo et al., 2018), relaxing and reflecting (Morrisby et al., 2019), social interactions with families, relatives, and friends (Ducharme et al., 2014; McCabe et al., 2016; Morrisby et al., 2019; Tatangelo et al., 2018) and partaking in holidays (Tatangelo et al., 2018). 2.1.2 Information Needs Knowledge of dementia is essential for understanding the caregiving role and experience. Caregivers have highlighted the need for increased personal knowledge of dementia and improved knowledge among their social communities and healthcare providers. As such, more information on various aspects of dementia is needed among these groups. 15 2.1.2.1 Knowledge of Dementia. Caregivers have identified several areas in which they would benefit from additional personal knowledge of dementia. The specific knowledge they desire includes information on the disease progression, disease treatments, financial assistance, who to contact in emergencies, physical adaptations that should be made to their homes (Ducharme et al., 2014) strategies for disease management and stress coping skills (De Cole et al., 2017), and availability of services (Munkejord et al., 2020). This lack of personal knowledge also extends to the general caregiving role as evidenced by Black et alâs (2019) finding, which highlights that 85% of caregivers report having received inadequate general caregiver education. Further, caregivers have recognized their need for increased knowledge regarding communication strategies about dementia with their family and friend networks (Ducharme et al., 2014). Many caregivers have struggled with disclosing the diagnosis and consequences of dementia to their social networks and recognize that they require additional information to talk openly about the circumstances of their role and engage in these conversations effectively (Ducharme et al., 2014). Although information may be available online and through other resources, caregivers have noted their inability to locate the right information on their own (Munkejord et al., 2020), which may be a result of online information being de-centralized and disjointed. 2.1.2.2 Social Network Knowledge. It is important for caregivers to be able to communicate about dementia and their caregiving experiences with individuals in their social networks. Evidence suggests that personhood-based knowledge of dementia among community members can contribute to less 16 fear of dementia and more social comfort (Ebert et al., 2020). Further, biomedical knowledge about dementia can also contribute to improved experiences in engaging with people with dementia and their caregivers (Ebert et al., 2020). As such, obtaining a balanced combination of personhood-based knowledge and biomedical knowledge among community members is important as this may prevent the perpetuation of misinformation and stigma (Ebert et al., 2020). There are different ways to obtain this knowledge, however, experiential learning in which community members engage in meaningful interactions with people with dementia and/or their caregivers are recommended (Ebert et al., 2020). Evidently, the impact of community membersâ knowledge of dementia can contribute to developing social comfort and subsequent environments that facilitate honest, non-judgmental and supportive communication among caregivers and their social networks. 2.1.2.3 Provider Knowledge. Caregivers place great value on knowledgeable health care providers but often find they do not offer informed support regarding disease progression and system navigation (McCabe et al., 2016; Tatangelo et al., 2018). Caregivers often feel overwhelmed by the volume of information provided to them by providers and subsequently find it challenging to access specific information that is valuable to them (Tatangelo et al., 2018). Knowledge about the individual circumstances of caregiversâ experiences is important as it contributes to the efficacy of services by ensuring that helpful support is provided when needed (Black et al., 2019). The inability for health care providers to acknowledge caregiversâ personal circumstances is attributed, in part, to the lack of a personal relationship between caregivers and providers that enables an understanding of their needs as individuals (Newman et al., 2019). For example, 17 caregivers want providers to be aware of the demographic and socioeconomic factors that may influence their knowledge of health care and social services, their attitudes toward these factors, and their ability to access them (Black et al., 2019). Further, caregivers have also recognized that providers lack skills in listening to the needs and experiences of caregivers as well as persons living with dementia (Munkejord et al., 2020). These areas of knowledge are crucial as they influence the extent to which a caregiver will feel comfortable asking crucial questions. As increased expertise among providers can support caregivers to make informed decisions (McCabe et al., 2016), there is a need for increased and ongoing communication between providers, caregivers, and persons living with dementia to ensure that unique, appropriate and timely information is provided (Ducharme et al., 2014; McCabe et al., 2016). 2.1.3 Formal Support Caregivers rely on services from the healthcare system and community organizations to support them with their role. However, there are many barriers to accessing existing services, inadequacies within services, and specific issues related to services that are intended to support persons living with dementia. 2.1.3.1 Barriers to Accessing Services. Caregivers have identified a variety of barriers that prevent them from accessing formal services for themselves, as well as the persons living with dementia. The application processes required to receive services from a variety of health care providers is complex and often demonstrates a system level lack of understanding of caregivers and persons living with 18 dementia (McCabe et al., 2016; Tatangelo et al., 2018). For example, the significant time commitment of applications and initial assessments is not feasible as they take away time from caregiving duties (Morrisby et al., 2015). Services that lack individualization are another barrier as they often result in caregivers cancelling services if the regular workers are unavailable, or if the services and activities are repetitive (McCabe et al., 2016). For example, respite services are designed to relieve caregiver burden and provide them with additional time to meet their own needs, however, caregivers are reluctant to use respite services as they are perceived to be inadequate, inflexible, and inconvenient (Tatangelo et al., 2018). Further, resistance from persons living with dementia can present barriers to caregivers accessing respite as they often feel guilty if they push the person living with dementia to attend or receive outside support (Tatangelo et al., 2018). Financial barriers often prevent caregivers from accessing services such as formal counselling support despite caregiversâ recognition of the potential efficacy (McCabe et al., 2016; Munkejord et al., 2020). Finally, caregivers often provide more focus on the needs of the person living with dementia rather than their own (Tremont, 2011), which is representative of the interconnectedness of their needs. However, when engaging with the healthcare system, caregivers are often forgotten as focus is placed on the person living with dementia (Morrisby et al., 2015). This may contribute to caregiversâ refraining from communicating their needs and inquiring about services. 2.1.3.2 Issues with Existing Services. Caregivers have highlighted an array of challenges with existing services. When caregivers access services, they often experience inadequate services that lack flexibility (Tatangelo et al., 2018), a lack of empathy and inconsistency in the care provided (Morrisby et 19 al., 2015), delays in receiving support after a dementia diagnosis service delivery, and support that does not account for the unique needs of dyads (Ducharme et al., 2014). Addressing the unique needs of dyads is essential as, in some cases, the efficacy of programs decreases as the disease progresses because the programs do not adapt to the changing needs of the caregiver (Morrisby et al., 2015). Further, support is often too broad as it is not tailored to the specific needs of caregivers and requires additional refining (Morrisby et al., 2015; Munkejord et al., 2020). It is essential to facilitate consistent, strong, trusting and positive relationships among caregivers and providers within these services (Ducharme et al., 2014; McCabe et al., 2016; Tatangelo et al., 2018), as services that do not meet caregiversâ expectations for quality and relationship-based care can result in decreased utilization (Morrisby et al., 2015). When multiple providers are involved in services, caregivers have witnessed a lack of communication between providers, a lack of empathy from staff, inconsistency in care from different staff knowledge and turnover, and an imbalance of focus placed on the individual with dementia rather than themselves (McCabe et al., 2016). Specifically, caregivers highlight that they require additional support through respite (Munkejord et al., 2020), more effective financial supports, and increased social support (Morrisby et al., 2015). Further caregivers repeatedly highlighted the efficacy of support groups with their peers, however, they did not feel that they were provided with enough opportunities to engage in these groups (McCabe et al., 2016). As a result of these challenges, caregivers often worry about who will care for their loved one if they were no longer capable of providing care and believe the current support for their loved one would be inadequate (Tatangelo et al., 2018). When formal support services are effective, they contribute to positive encouragement, a sense of belonging and security, a boost in motivation, a release of emotional 20 burden and stress, and overall relief (McCabe et al., 2016). Therefore, it is essential to improve the accessibility and efficacy of these services. 2.1.3.3 Issues with Services for Persons Living with Dementia. Caregiversâ concerns with the current support services for persons living with dementia are focused on their lack of stimulation and promotion of dignity. Some existing programs are viewed as inadequate at providing stimulation and social experiences for the persons living with dementia (Ducharme et al., 2014). Caregivers have reported the need for persons living with dementia to be valued and stimulated through a variety of activities in formal support services, and to have increased contact with social networks to reduce the emotional burden of caregivers by providing persons living with dementia with another empathetic sounding board (Ducharme et al., 2014). The promotion of dignity and agency for the person living with dementia can be provided in a variety of ways, including using a collaborative decision-making process to agree upon the type of care they are offered (Ducharme et al., 2014). These issues with existing services are focused on the persons living with dementia and would not necessarily be addressed through interventions that are intended for caregivers. However, addressing them may contribute to improving caregiversâ well-being as their needs are deeply interconnected with those of persons living with dementia (Ducharme et al., 2014). 2.1.4 Summary Caregivers have a multitude of interrelated needs that relate to personal health, knowledge, and formal support services. However, the specific aspects of these needs are highly 21 individual and vary depending on individual circumstances. As such, interventions that intend to meet caregiversâ needs should provide continuity of care from a provider who is well-educated in dementia, has established a strong and trusting relationship with the caregiver and person living with dementia, and is able to provide holistic and personalized care that is tailored to their unique needs. Although caregivers have many needs that relate to their own personal health, the inherent motivation to meet their needs is often to improve the care they provide to the person living with dementia (Tatengelo, 2018). This is demonstrative of the interconnectedness of the needs of caregivers and persons living with dementia and highlights the importance of meeting caregiversâ needs to improve dementia care. 2.2 Rapid Review: Interventions for Caregivers of Persons Living with Dementia This rapid review examines systematic reviews that evaluate existing interventions to support caregivers of persons living with dementia. 2.2.1 Methods This rapid review followed the Joanna Briggs methodology (The Joanna Briggs Institute, 2015). To ensure all requirements of a rapid review were met, the Brief Review Checklist (BRC) by Abrami et al. (2010) was also used. The BRC ensures that key components of a brief review are adequately focused on through a methodical process (Abrami et al., 2010). A brief review is an examination of the literature with limits, which may include the period of time in which the review was conducted, the breadth of the research question, and the depth of the analysis (Abrami et al., 2010). These reviews are useful for developing a broad understanding of evidence 22 to inform precise questions for future research (The Joanna Briggs Institute, 2015). Brief reviews that follow the BRC can be useful as they consolidate evidence that can support research and be useful to policymakers (Abrami et al., 2010). This rapid review was conducted using MEDLINE, CINAHL, and EMBASE databases over a four-month period from September 2020 to December 2020. The review question was, âWhat is the empirical evidence on non-professional interventions to meet the needs of family caregivers of persons living with dementia?â. As there is a robust body of literature examining interventions for caregivers, only systematic reviews were examined in this review. A review of systematic reviews can make sense of a large amount of data by providing a succinct summary of findings from a variety of studies. The search strategy included conceptual terms related to dementia AND caregiving AND systematic review (see Appendix A). Terms were identified in consultation with a library scientist and from a review of key terms of studies that had been identified as applicable to the review. The search strategy was designed to identify systematic reviews of qualitative and quantitative studies that examined interventions to support family and friend caregivers of older adults with dementia. The limits applied to this search included systematic reviews published in the English language, those with abstracts, and those published during or after the year 2000. The search yielded 965 systematic reviews. After duplicates were removed, these systematic reviews were screened using the inclusion and exclusion criteria (see Appendix A). It is important to note that this overview was conducted to inform the development of a community-based, peer-led intervention. Therefore, reviews that focused only on interventions that could be provided by a professional (e.g., mental health services) were excluded to ensure that the interventions could potentially be provided by trained volunteers and that findings could support the development of a volunteer navigation program. Some systematic 23 reviews discussed interventions that also included a service provided by a professional. However, the program was coordinated by a non-professional and/or provided additional services that did not require a professional. Therefore, the findings were still relevant to the purposes of this review. A screening of abstract and titles was conducted by a single reviewer (MS) in consultation with a second reviewer (BP). No reliability indices were calculated. The full texts of 76 systematic reviews were retrieved and reviewed for potential inclusion. This resulted in a final sample size of 19 systematic reviews. Reference searching of these systematic reviews yielded no further results. Data from these systematic reviews were described using a data extraction table to help facilitate an analysis of the interventions, identify common outcomes measured, the kind of interventions implemented, and the strengths and limitations of the studies, while also enable comparisons across studies. There was a diverse set of interventions and outcomes reported on in the final sample of reviews. To facilitate analysis across these reviews, a thematic analysis was constructed of the interventions and outcomes to establish categories (see Appendix A). This was necessary as there were a number of interventions and outcomes that were conceptually similar but named differently across systematic reviews. Placing these into thematic groupings allowed a more robust comparison across reviews. The significance and impact of interventions reported were collected from the reporting in the systematic reviews, and additional analyses were not conducted for this review. 24 2.2.2 Interventions for Caregivers of Persons Living with Dementia There is a large body of research that examines a variety of interventions intended to support caregivers of persons living with dementia. Interventions were thematically organized as psychosocial and social support, key workers, technology based, multicomponent, case management/care coordination, psychoeducational, and exercise and health promotion (see Appendix A). Outcomes were thematically organized as burden, depression and anxiety, social outcomes, knowledge and skills, quality of life, health and well-being, and health care services utilization (see Appendix A). The most frequently examined outcomes included burden, depression and anxiety, and health and well-being. Fewer studies examined the efficacy of interventions on social outcomes, knowledge and skills, quality of life, and health care services utilization. While there is variation in the efficacy of interventions across outcomes, psychoeducational, psychosocial and social support and multicomponent interventions consistently result in positive impacts on several outcomes. 2.2.2.1 Burden. Burden, which encompasses the experience of both burden and stress, was the most frequently investigated outcome. Seventeen of the 19 systematic reviews that were extracted examined the impact of various interventions on caregiver burden (Abrahams et al., 2018; Boots et al., 2014; Bunn et al., 2016; Cheng et al., 2020; Cooke et al., 2001; Corbett et al., 2012; Dam, de Vugt, Klinkenberg, Verhey, & Van Boxtel, 2016; Deeken, Rezo, Hinz, Discher, & Rapp, 2019; Goeman, Renehan, & Koch, 2016; Hopwood et al., 2018; Kishita, Hammond, Dietrich, & Mioshi, 2018; Leven et al., 2013; McKechnie, Barker, & Stott, 2014; Smith & Greenwood, 25 2014; Smits et al., 2007; Thompson et al., 2007; Vandepitte et al., 2016). The interventions used to address burden included psychosocial and social support, key workers, case management and/or care coordination, education and skills training, exercise and/or health promotion, and multicomponent (Abrahams et al., 2018; Boots et al., 2014; Bunn et al., 2016; Cheng et al., 2020; Cooke et al., 2001; Corbett et al., 2012; Dam et al., 2016; Deeken et al., 2019; Goeman et al., 2016; Hopwood et al., 2018; Kishita et al., 2018; Leven et al., 2013; McKechnie et al., 2014; Smith & Greenwood, 2014; Smits et al., 2007; Thompson et al., 2007; Vandepitte et al., 2016). 15 of the 17 systematic reviews reported that the caregiver intervention under investigation significantly decreased caregiver burden (Abrahams et al., 2018; Boots et al., 2014; Bunn et al., 2016; Cheng et al., 2020; Cooke et al., 2001; Dam et al., 2016; Deeken et al., 2019; Goeman et al., 2016; Hopwood et al., 2018; Kishita et al., 2018; Leven et al., 2013; McKechnie et al., 2014; Smith & Greenwood, 2014; Smits et al., 2007; Vandepitte et al., 2016). Specific components of interventions that contributed to positive outcomes included psychoeducational skill-building, interventions that were delivered individually rather than in groups, and multicomponent interventions (Kishita et al., 2018; Vandepitte et al., 2016). Eight of the 17 systematic reviews reported null associations (Bunn et al., 2016; Cooke et al., 2001; Corbett et al., 2012; Dam et al., 2016; Deeken et al., 2019; Leven et al., 2013; Smits et al., 2007; Vandepitte et al., 2016). Non-significant results, or no impacts, were noted as attributed to volunteer led interventions, group-based single component interventions, and low-quality studies (Boots et al., 2014; Bunn et al., 2016; McKechnie et al., 2014; Vandepitte et al., 2016). The use of different research methods was noted as a factor that contributed to mixed findings. For example, quantitative measures often produced findings that conflicted with those found through qualitative inquiry (Corbett et al., 2012; Smith & Greenwood, 2014). In addition, assessments conducted at longer follow-up 26 time points demonstrated non-significant results or no impacts (Leven et al., 2013). Two studies recognized that, in some cases, peer networks and educational lectures provided over the telephone, as well as case management interventions, further exacerbated burden (Cooke et al., 2001; Smits et al., 2007). 2.2.2.2 Depression and Anxiety. Depression and anxiety were grouped as one outcome as they were often targeted together in interventions and assessed together in the presentation of findings. 14 studies investigated this outcome and identified positive effects (Abrahams et al., 2018; Boots et al., 2014; Bunn et al., 2016; Cheng et al., 2020; Dam et al., 2016; Deeken et al., 2019; Hopwood et al., 2018; Kishita et al., 2018; McKechnie et al., 2014; Parra-Vidales, Soto-Pérez, Perea-Bartolomé, Franco-Martín, & Muñoz-Sánchez, 2017; Smith & Greenwood, 2014; Smits et al., 2007; Thompson et al., 2007; Vandepitte et al., 2016). The specific components of interventions that contributed to positive impacts included befriending, peer support, cognitive behavioural therapy, psychoeducational interventions, group-based interventions, telephone support groups for caregivers over the age of 65, and multicomponent interventions (Dam et al., 2016; Kishita et al., 2018; Parra-Vidales et al., 2017; Smith & Greenwood, 2014; Smits et al., 2007; Vandepitte et al., 2016). 10 systematic reviews reported non-significant results or no impact, which were noted as being attributed to assessments that were conducted during long follow-up periods, low quality studies, individual and group-based, single-component interventions, telephone support groups, and psychoeducational skill building (Abrahams et al., 2018; Boots et al., 2014; Bunn et al., 2016; Dam et al., 2016; Deeken et al., 2019; Kishita et al., 2018; McKechnie et al., ., 2014; 27 Smits et al., 2007; Thompson et al., 2007; Vandepitte et al., 2016). One study identified a negative outcome when correlated with case management interventions (Smits et al., 2007). 2.2.2.3 Health and Well-Being. Health and well-being are outcomes that encompass several aspects of health, including physical well-being, mental wellbeing, general health, subjective well-being, and mood. These outcomes were discussed in 13 systematic reviews (Abrahams et al., 2018; Bunn et al., 2016; Cheng et al., 2020; Cooke et al., 2001; Goeman et al., 2016; Hopwood et al., 2018; Kishita et al., 2018; Leven et al., 2013; McKechnie et al., 2014; Parra-Vidales et al., 2017; Smith & Greenwood, 2014; Smits et al., 2007; Vandepitte et al., 2016). Positive impacts from interventions were highlighted in 11 systematic reviews (Abrahams et al., 2018; Bunn et al., 2016; Cheng et al., 2020; Cooke et al., 2001; Hopwood et al., 2018; Kishita et al., 2018; Leven et al., 2013; McKechnie et al., 2014; Parra-Vidales et al., 2017; Smits et al., 2007; Vandepitte et al., 2016). The types of interventions associated with positive outcomes included multicomponent interventions, specialist nursing and community support, psychosocial and social support interventions, Internet-based support interventions, psychoeducational and psychotherapeutic programs, dyadic psychosocial interventions between the caregiver and person living with dementia, computer-based, and supportive strategies (Abrahams et al., 2018; Bunn et al., 2016; Cheng et al., 2020; Cooke et al., 2001; Hopwood et al., 2018; Kishita et al., 2018; Leven et al., 2013; McKechnie et al., 2014; Parra-Vidales et al., 2017; Smits et al., 2007; Vandepitte et al., 2016). Non-significant results or no impacts were identified in 10 systematic reviews (Abrahams et al., 2018; Bunn et al., 2016; Cooke et al., 2001; Goeman et al., 2016; Kishita et al., 2018; Leven et al., 2013; McKechnie et al., 2014; Smith & Greenwood, 2014; Smits et al., 2007; 28 Vandepitte et al., 2016). These results were noted as being attributed to methodological issues which included low quality studies and long follow-up periods, as well as specific components of interventions including utilizing one-to-one befriending, psychoeducational interventions, psychosocial and social support interventions, and support workers, and programs that lacked training in communication skills (Abrahams et al., 2018; Bunn et al., 2016; Cooke et al., 2001; Goeman et al., 2016; Kishita et al., 2018; Leven et al., 2013; McKechnie et al., 2014; Smith & Greenwood, 2014; Smits et al., 2007; Vandepitte et al., 2016). Negative impacts on health and well-being were not noted. 2.2.2.4 Social Outcomes. The category of social outcomes includes aspects of social support, support needs, and reductions in isolation and loneliness. Social outcomes were examined in seven systematic reviews (Abrahams et al., 2018; Cheng et al., 2020; Cooke et al., 2001; Dam et al., 2016; Goeman et al., 2016; McKechnie et al., 2014; Smith & Greenwood, 2014). Positive impacts were identified in six systematic reviews and were noted as being attributed to the use of multicomponent interventions, psychosocial and social support interventions, computer-mediated interventions, and telephone peer support interventions (Abrahams et al., 2018; Cheng et al., 2020; Cooke et al., 2001; Dam et al., 2016; McKechnie et al., 2014; Smith & Greenwood, 2014). In five systematic reviews, non-significant impacts or no reporting of results was provided (Cooke et al., 2001; Dam et al., 2016; Goeman et al., 2016; McKechnie et al., 2014; Smith & Greenwood, 2014). It was highlighted that these results were attributed to poor quality studies, non-standardized measurements among studies, which made it challenging to determine the collective impacts of interventions, and quantitative assessments that failed to recognize the 29 positive results identified through qualitative assessments (Cooke et al., 2001; Dam et al., 2016; McKechnie et al., 2014; Smith & Greenwood, 2014). Negative impacts on social outcomes were not identified in any of the systematic reviews. 2.2.2.5 Knowledge and Skills. Knowledge and skills are outcomes that encompass feelings of competency, knowledge about dementia, the acquisition of accessible and personalized information, self-efficacy, and self-esteem. These outcomes were evaluated in six systematic reviews (Boots et al., 2014; Cheng et al., 2020; Dam et al., 2016; McKechnie et al., 2014; Parra-Vidales et al., 2017; Vandepitte et al., 2016). Positive results were found in five of these systematic reviews, and authors attributed these to the success of Internet-based supportive interventions to meet educational and support needs, computer mediated interventions, psychoeducational interventions through web-based and non-web-based platforms, and supportive strategy interventions (Boots et al., 2014; Cheng et al., 2020; McKechnie et al., 2014; Parra-Vidales et al., 2017; Vandepitte et al., 2016). Two systematic reviews found non-significant results or no impacts and attributed these results to the use of quantitative measures that may have been unable to detect the full impact of interventions (Boots et al., 2014; Dam et al., 2016). Negative impacts were not reported in any systematic reviews. 2.2.2.6 Quality of Life. Quality of life was examined in seven systematic reviews, and positive impacts were identified in all of them (Corbett et al., 2012; Dam et al., 2016; Goeman et al., 2016; Lee, Ryoo, Crowder, Byon, & Wiiliams, 2020; Leven et al., 2013; McKechnie et al., 2014; Smits et al., 30 2007). It was highlighted that these results were attributed to the use of information and advice services, social support using video-conferencing, support groups, support workers, supportive strategies, psychosocial and social support interventions, dyadic psychosocial interventions between the caregiver and person living with dementia, and computer-mediated interventions (Corbett et al., 2012; Dam et al., 2016; Goeman et al., 2016; Lee et al., 2020; Leven et al., 2013; McKechnie et al., 2014; Smits et al., 2007). Non-significant results or no impacts were identified in five systematic reviews (Dam et al., 2016; Lee et al., 2020; Leven et al., 2013; McKechnie et al., 2014; Smits et al., 2007). It was highlighted that specific interventions attributed to these results included befriending and peer support, family support, network interventions, and case management (Dam et al., 2016; Lee et al., 2020; Leven et al., 2013; McKechnie et al., 2014; Smits et al., 2007). In some cases, positive impacts that were identified in the first measurement were non-significant at subsequent follow-up (Corbett et al., 2012). Negative impacts were not reported in any systematic reviews. 2.2.2.7 Health Care Services Utilization. The outcome of health care services utilization includes the time for the person living with dementia to move into long-term care or includes when the care recipient moved into long-term care, the number of times the person living with dementia is hospitalized person living with dementia hospitalizations, and the number of volunteer visits made to the caregiver. This outcome was examined in three systematic reviews, and positive impacts were identified in all (Bunn et al., 2016; Goeman et al., 2016; Vandepitte et al., 2016). Interventions that had positive impacts included psychosocial support provided by specialist nursing and community support, support worker roles, support group meetings, at-home training, and information sessions (Bunn 31 et al., 2016; Goeman et al., 2016; Vandepitte et al., 2016). The efficacy of information sessions was assessed again at a two-year follow-up time point, and nonsignificant positive results were detected (Vandepitte et al., 2016). Inconclusive results were determined in one intervention that utilized case management (Bunn et al., 2016). Negative impacts were not identified in any of the systematic reviews. 2.2.3 Summary While there is variation in the efficacy of interventions across outcomes, there is sufficient evidence to guide the development of future programs to address the needs of caregivers. Psychoeducational, psychosocial and social support, and multicomponent interventions consistently contribute to positive impacts on a variety of outcomes. However, the most impactful combination of specific interventions that should be utilized in multicomponent interventions is unclear. Despite this uncertainty, the repeated success of psychoeducational, psychosocial and social support interventions suggests that these components should be utilized in conjunction with one another in multicomponent interventions that are tailored to the needs of individuals. In order to accomplish this, future programs need to provide adequate time for caregivers and intervention administrators to develop meaningful relationships in which the caregivers feel comfortable to share their individual needs, and the administrator can truly understand them. Improved programs that meet the needs of caregivers must be developed in order to ensure that this vulnerable population is adequately supported, the person living with dementia is cared for, and the financial costs to our health care system and society are reduced. Mixed results, non-significant findings or no impacts were frequently found and were attributed to several factors including measurements that may not have comprehensively captured the impacts, specific components of interventions, and methods of delivery of 32 interventions. These methodological factors included low quality studies, the use of quantitative measurements that were unable to capture the nuances of the impacts, and follow-up assessments in which the impacts were no longer identifiable. Single component interventions were associated with non-significant results on burden, depression and anxiety, and health and well-being. Specifically, interventions that did not incorporate communication skills training, psychoeducation, psychosocial and social support, and support workers contributed to non-significant results on health and well-being. The interventionsâ method of delivery also impacted efficacy. Interventions provided through various forms of technology positively affected depression and anxiety, social outcomes, healthcare utilization, quality of life, knowledge and skills, and health and well-being. Interventions conducted over the phone, such as telephone support groups, decreased experiences of depression and anxiety and had positive impacts on social outcomes. Social support that were provided through video conferencing also had positive impacts on quality of life. Computer-based interventions had positive impacts on health and well-being, social outcomes, knowledge and skills, and health care utilization. Finally, whether interventions were conducted individually or in groups contributed to different impacts on various outcomes. For example, the experience of burden was reduced when interventions were delivered individually. In other cases, depression and anxiety were reduced when interventions were provided in groups. Specifically, support groups were impactful on depression and anxiety as well as the utilization of healthcare services, and quality of life. These findings demonstrate that there is insufficient evidence to suggest that one measurement type, specific component of an intervention, and mode of delivery is more effective as findings were case specific, contextual, and inconsistent. Despite the variation in efficacy, psychosocial and social support, psychoeducational, and multicomponent interventions consistently contributed to positive 33 impacts on a multitude of outcomes. Additional research should examine the specific combined elements of multicomponent interventions that are most effective. The following section will outline dementia navigation interventions that should be examined in detail as they utilize unique, collaborative and multicomponent intervention approaches. 2.3 Navigation Programs in Dementia Care Patient navigation emerged in the 1980s as a strategy to improve patient outcomes in vulnerable populations by eliminating barriers to appropriate diagnoses and treatments of cancer and chronic diseases (Freeman & Rodriguez, 2011). Since its development, patient navigation has become a staple of cancer care (Burbage, 2024). There are several key principles of navigation which include efforts to support; 1) a patient-centric service delivery model, 2) integration of a fragmented healthcare system for individual patients, 3) elimination of barriers to timely care across all segments of the healthcare continuum, 4) a clear definition of a scope of practice that distinguishes the distinct role and responsibilities of the navigator and integration into a healthcare team to maximize the benefit, 5) cost-effective delivery of services that align with the training and skills required for navigation at any given stage, 6) appropriate determination of who is the navigator based on the necessary skills at each phase of navigation (i.e., navigatorsâ skills must be able to meet the dyadâs needs), 7) a clear definition of the starting and ending points of navigation, 8) navigation support that extends across disconnected systems of care, and 9) appropriate coordination (Freeman & Rodriguez, 2011). Many dementia care coordination and navigation programs incorporate key aspects of these core principles to support individuals living with dementia and their caregivers by offering emotional support, assisting with healthcare system navigation, connecting them to resources, and facilitating collaboration 34 with interdisciplinary teams (Amjad et al., 2018; Duru et al., 2009; French et al., 2014; Jennings et al., 2019; LaMantia et al., 2015; Morgan et al., 2015; Reuben et al., 2013; Samus et al., 2014). Dementia navigation programs have a variety of labels and are sometimes referred to as care navigation (Bernstein et al., 2019), care coordination services (Amjad et al., 2009; Samus et al., 2014), care management services (Duru et al., 2009), health management programs (LaMantia et al., 2015), and care programs (Reuben et al., 2013). The primary points of contact who provide support have a variety of labels, including care team navigators (Bernstein et al., 2019), care managers (Duru et al., 2009; Reuben et al., 2013; Jennings, 2019), care coordinators (Amjad et al., 2018; LaMantia et al., 2015; Morgan et al., 2015), care consultants (Morgan et al., 2015), and coordinators (Samus et al., 2014), among others. Dementia navigation programs often utilize teams consisting of clinically and non-clinically trained staff. Individuals in the various coordinator roles serve as the central point of contact for clients, have diverse personal and professional backgrounds, and work in a paid role to assist persons living with dementia and their caregivers in navigating the changing needs throughout the disease trajectory (Amjad et al., 2018; Duru et al., 2009; Morgan et al., 2015; French et al., 2014; LaMantia et al., 2015; Reuben et al., 2013; Samus et al., 2014; Jennings et al., 2019). Navigation programs that employ non-clinically trained health workers in coordinator roles, supported by clinical teams, have demonstrated several positive impacts, including improved health outcomes, reduced hospital readmissions among high-risk older adults, and mitigation of various health disparities (Bernstein et al., 2019). The specific coordinator characteristics that drive positive impacts may differ across programs. However, interpersonal skills are repeatedly recognized as essential qualities (Bernstein et al., 2019; Bernstein et al., 2020; Giebel et al., 2023). 35 The coordinatorsâ level of involvement varies among programs. Coordinators provide support by conducting in-home visits in collaboration with interdisciplinary partners to prioritize needs and develop a care plan (Amjad et al., 2018), performing structured home assessments, identifying problems, and sending a summary to the primary physicians and other providers (Duru et al., 2009), referring and linking persons living with dementia to various services, and providing skill-building strategies and education (Samus et al., 2014), among other types of supports. Services are often provided through a combination of in-person and telephone or internet contact (Duru et al., 2009; French et al., 2014; LaMantia et al., 2015; Samus et al., 2014; Jennings et al., 2019), or only through the telephone and/or internet (Bernstein et al., 2019; Morgan et al., 2015). Contact between providers and clients varies as it is sometimes made once per month (Duru et al., 2009; French et al., 2014; Jennings et al., 2019; LaMantia et al., 2015; Morgan et al., 2015; Samus et al., 2014), twice per month (Amjad et al., 2018; Samus et al., 2014), or once every three months after an initial introduction phase (LaMantia et al., 2015). The frequency of contact varies both within and across programs, depending on the evolving needs and preferences of persons living with dementia and their caregivers. Due to significant variation among programs and individual circumstances, there is no clear consensus on the most effective delivery method or optimal frequency of contact. However, many programs prioritize continuous re-evaluation of the needs of persons living with dementia and their caregivers to adjust delivery to better meet their needs (Amjad et al., 2018; Duru et al., 2009; French et al., 2014; Jennings et al., 2019; LaMantia et al., 2015; Morgan et al., 2015; Samus et al., 2014). Dementia navigation programs share common goals with those designed for other diseases. However, there are important distinctions. For example, cancer navigation programs often aim to improve patient survival (Bernstein et al., 2019). In contrast, the goals of dementia 36 navigation programs include offering caregiver education and support, providing information on community-specific resources, sharing care planning, legal and decision-making tools, developing tailored behavioral interventions (Bernstein et al., 2019), supporting individualized care planning (Reuben et al., 2013; Samus et al., 2014), referring and linking to services, providing dementia education and skill-building information, supporting care monitoring (Samus et al., 2014), decreasing specific health service utilization (e.g., emergency department visits for the person living with dementia), extending the ability for the person living with dementia to remain in the home (Jennings et al., 2019), and reducing costs of care (French et al., 2014; Jennings et al., 2019). Many dementia navigation programs focus primarily on the needs of the person living with dementia rather than the caregiver (Bernstein et al., 2020). For example, the impacts on caregiversâ needs are often briefly assessed to develop a deeper understanding of the overall impacts of the program and are not the primary focus of service provisions or evaluations (Duru et al., 2009; French et al., 2014; Jennings et al., 2019; LaMantia et al., 2015; Morgan et al., 2015; Samus et al., 2014). For example, programs have incorporated a needs assessment of both the person living with dementia and the caregiver to inform the plan of care (Reuben et al., 2013) and provided services directly to caregivers in the form of education, resource referrals, general health care, mental health care, and other needs that caregivers identified as needed (Samus et al., 2014), provided emotional support, resources and education, connected caregivers to social services, and assisted with medication reconciliation and advanced care planning (Bernstein et al., 2019). However, a thorough assessment of the impacts of these services was not always completed. Providing support to caregivers has contributed to improvements in the quality of caregiving, connected caregivers to existing community services, and decreased unmet 37 caregiving assistance needs (Duru et al., 2009). Further, coordinators observed that supporting persons living with dementia often involved working closely with their caregivers, a collaboration they attributed to much of the intervention's success (Bernstein et al., 2019). 2.3.1 The Care Ecosystem Navigation Program The Care Ecosystem (TCE) is a well-established and thoroughly evaluated navigation program delivered online and over the phone, providing support to caregivers and persons living with dementia. A thorough evaluation of TCE can help guide the adaptation of Nav-CARE to support caregivers of persons living with dementia by identifying the key factors that contributed to its success, the barriers and challenges encountered, and the impacts. TCE aims to address and improve outcomes related to the diverse needs that caregivers and persons living with dementia have identified as priorities (Bernstein et al., 2019; Bernstein et al., 2020; Merrilees et al., 2020; Possin et al., 2019; Rosa et al., 2019). The program consists of a collaborative group of care team navigators (CTNs), often without a clinical background, who are supported by a clinical team of dementia specialists, including advanced practice nurses, social workers, and pharmacists (Bernstein et al., 2019; Bernstein et al., 2020; Merrilees et al., 2020; Possin et al., 2019; Rosa et al., 2019). The CTNs receive extensive training in dementia, which consists of 80 hours of site visits, clinical observations, debriefing, and shadowing with ongoing supervision and support from a nurse (Bernstein et al., 2019; Merrilees et al., 2020; Possin et al., 2019). CTNs provide caregiver education and support, curated information about community-based resources, share care planning and legal and decision-making tools, monitor health status, review medications, and provide tailored behavioral interventions to caregivers and persons living with dementia through scheduled phone calls at a minimum of once per month (Bernstein et al., 2019; Possin et 38 al., 2019). Clinical specialists are relied upon only when the issues are out of the scope of CTNs (Possin et al., 2019). CTNs manage large caseloads of approximately 50-80 dyads (i.e., caregivers and persons living with dementia) at any given time (Bernstein et al., 2019). CTNs are compensated financially for their work as they are required to work full- or part-time and do not provide services in a volunteer capacity (Possin et al., 2019). 2.3.1.1 Impacts. TCE has contributed to a multitude of positive impacts on persons living with dementia and caregivers. In a randomized control trial that examined the efficacy of TCE, Possin et al (2019) found that persons living with dementia, who did not receive TCE intervention, presented with a greater decline in quality of life over a 12-month period compared to those who received the intervention. Further, TCE intervention prevented emergency department visits, ambulance use events and hospitalizations over a 12-month period (Possin et al., 2019). These impacts directly impact caregivers as a reduction in these events may reduce their worry, stress, and burden. TCE has positively impacted caregiversâ mental health. TCE was associated with a decrease in depression and burden in caregivers over a 12-month period (Possin et al., 2019). Further, the frequency of moderate to severe depression also decreased over a 12-month period (Possin et al., 2019). Caregivers reported an increase in self-efficacy regarding their ability to care for the person living with dementia (Possin et al., 2019). Further, caregivers were very satisfied with the program, as 97% indicated that they would recommend TCE to another caregiver, and 78.3% were satisfied or very satisfied with the program (Possin et al., 2019). Caregivers highlighted the importance of navigators having a deep understanding of dementia and establishing a strong relationship with caregivers and the person living with 39 dementia, as this contributed to several improvements in their self-efficacy (Bernstein et al., 2019; Merrilees et al., 2020; Possin et al., 2019). For example, these strong relationships facilitated caregiversâ ability to benefit from psychosocial interventions, improving their knowledge and preparedness to care for persons living with dementia (Merrilees et al., 2020). As a result, caregivers reported increased confidence in knowing where to access services, managing future caregiving challenges and changes in the person living with dementiaâs behaviours, and that they had more people to turn to in times of need (Merrilees et al., 2020). These improvements in self-efficacy positively influenced caregiversâ health and well-being (Merrilees et al., 2020). Further, caregivers found that they trusted the navigator, felt supported and listened to and that the navigator was responsive and knowledgeable (Bernstein et al., 2019; Merrilees et al., 2020; Possin et al., 2019). Analyses of the CTE program indicate that it effectively reduces the multitude of societal and economic burdens of dementia (Possin et al., 2019; Rosa et al., 2019). One of the most cost-effective features of the CTE program is the collaborative model, which ensures that licensed dementia specialists are only utilized when their specific expertise is required, reducing their workload and subsequent cost of labor (Possin et al., 2019; Rosa et al., 2019). Reductions in persons living with dementiaâs use of services such as ambulance, hospitalizations and emergency department visits resulted in an average savings of approximately $600 per-person (Possin et al., 2019). The average operational costs associated with the implementation, early operations, and continuing operations of the program are $1,704 to $2,892 per person for a 12-month period (Rosa et al., 2019). These estimates account for personnel, supplies, equipment and training costs and are highly dependent on patient caseload (Rosa et al., 2019). A key factor that 40 contributed to the cost-effectiveness of the CTE program was the continuity of the CTN-dyad relationship as it allowed for high efficiency (Rosa et al., 2019). Continuity of the relationship was enhanced by hiring career employees who worked for the duration of the project as this resulted in familiarity and strong relationships with their caseloads (Rosa et al., 2019). Further, reliance on unlicensed CTNs, who were provided with supervision and support from dementia specialists, contributed significantly to reducing costs (Rosa et al., 2019). The costs of the CTE program are comparable to the costs of other programs for dementia care (Rosa et al., 2019). However, evaluations of the costs of CTE account for additional variables such as facility space and provide more attention to the needs of caregivers (Rosa et al., 2019). Therefore, the CTE program may be one of the most cost-effective programs to address broad needs. 2.3.1.2 Facilitators and Barriers. CTNs have highlighted several components of the TCE project that facilitated their work with caregivers and persons living with dementia. These factors include utilizing a relationship-oriented approach, placing emphasis on the caregiver, providing emotional support, coordinating with primary care providers, tailoring education and resources, triaging to clinical support teams, alleviating caregiver stress, reducing guilt and frustration in caregivers, addressing the persons living with dementiaâs challenging behavioral symptoms, enhancing caregiversâ feelings of competence and the persons living with dementiaâs independence, and supporting a meaningful and harmonious relationship between the caregiver and the person living with dementia (Bernstein et al., 2019; Bernstein et al., 2020). Navigators also recognized the importance of support from a diverse clinical team, as it supported and complemented their efforts (Bernstein et al., 2019). Focusing on these features contributed to CTNsâ ability to establish meaningful and 41 personal relationships among themselves, caregivers, and persons living with dementia, enabling CTNs to provide services that could meet their needs. CTNs recognized several challenges that inhibited their ability to provide adequate services to meet the needs of caregivers and persons living with dementia. These challenges included CTNsâ stress and burnout, difficulties associated with a neurodegenerative disease, coordinating with primary care providers, and identifying resources for low-income and rural and non-English-speaking dyads (Bernstein et al., 2019). While these challenges are significant, they can be minimized through adaptations to programs. For example, stress and burnout were often associated with providing support to several caregivers and persons living with dementia dyads (Bernstein et al., 2019). Therefore, it may be beneficial for navigators to work with a small panel of dyads at any given time. Further, diverse support for the CTNs. such as stress-reduction workshops and psychotherapist skill-building should be provided (Bernstein et al., 2019). Other challenges were inherent to the healthcare system and dementia. For example, CTNs recognized that they often struggled with supporting caregivers with their grief and the continuously changing plans that shift with the disease progression (Bernstein et al., 2019). Further, CTNs struggled to coordinate with primary care providers who are incredibly busy providing care to large patient panels and to support caregivers in accessing services when there are financial barriers (Bernstein et al., 2019). Although these challenges may be more difficult to address through program design, providing navigators with comprehensive training on grief and the dementia-related healthcare system is essential to equip them to minimize these challenges effectively. 42 2.3.2 Nav-CARE: A Volunteer Navigation Program for Older Adults Nav-CARE is a program that utilizes trained volunteers to support older adults with non-dementia-related chronic illnesses in the home. Nav-CARE assists clients in navigating the changes and needs that arise through the progression of disease (Duggleby et al., 2019). This encompasses a variety of support such as finding a housekeeper, meal-delivery service, reliable transportation, building support networks, providing a listening ear for healthcare-related decisions, and assisting and facilitating communication with healthcare professionals (Duggleby et al., 2019). The volunteer navigator is the central provider of these supports as they are a highly skilled, trained volunteer who works closely with families and clients to identify their priorities for quality of life (Duggleby et al., 2019). The focus is on helping clients and their families identify the most meaningful aspects of their community relationships and supporting them in accessing those priorities (Duggleby et al., 2019). Efforts are made to identify clients early in their disease trajectory to ensure that older adults can remain at home as long as possible (Duggleby et al., 2019). Nav-CARE has contributed to several positive impacts on older adults with advanced chronic illnesses who are living at home (Pesut et al., 2020). Individuals with chronic illness and their family members have highlighted that Nav-CARE has contributed to their experience of social connection and support, helped them to engage in social aspects of healthcare, increased their knowledge of and access to existing services (e.g., respite), and increased their confidence in making healthcare divisions (Pesut et al., 2020). Stakeholders also have positive perceptions of Nav-CARE as they recognize that it aligns with the strategic directions of their organization by facilitating outreach into the community, contributing to changing the public perception of 43 palliative care, and providing early palliative support (Pesut et al., 2020). Volunteers have positive perceptions of Nav-CARE recognizing that their role contributed to relationship building over time and good self-efficacy (Pesut et al., 2020). Components of Nav-CARE that are essential to its success include strong leadership in each site/community, strong support for volunteers, adequate preparation of volunteers and mentors, and organizational capacity and recruitment (Pesut et al., 2020). However, Nav-CARE was developed within the rural context. Therefore, the approach may require additional considerations when implemented across diverse communities (i.e., urban), and impacts may vary. These impacts, facilitators, and limitations are important to consider when adapting the Nav-CARE program to support caregivers of persons living with dementia. 2.3.2.1 Nav-CARE Adaptation. The impact of Nav-CARE on individuals living with dementia remains uncertain, as the program has not yet been implemented for this population. However, it may be feasible to adapt Nav-CARE to support caregivers of persons living with dementia. For example, caregivers of persons living with dementia have highlighted the benefits of sharing their experience with trained individuals early in the caregiving journey as this allows them to receive tailored formal care (Bressan et al., 2020). Nav-CARE could allow caregivers to share their experiences early on, as building a supportive and close relationship between the volunteer and the client is a core principle that the program strongly encourages and supports (Pesut et al., 2020). Using trained volunteers to administer interventions may be effective for this population. Dementia navigation research has shown that coordinators with diverse backgrounds can contribute similar levels of support (Goeman et al., 2016). For example, a coordinator who does not have a clinical 44 background but has received dementia training can contribute significantly to the success of interventions (Goeman et al., 2016). Furthermore, other features of interventionsâsuch as their duration, ongoing follow-up, face-to-face contact, individualized education and support, collaborative input, and inter-sectoral collaborationâwere found to have a greater impact on the efficacy of interventions than the academic background of the administrator (Goeman et al., 2016). Caregivers have also identified that their needs were met when they received ongoing support to organize services such as day-hospital and respite programs, obtain advice, develop coping mechanisms, and communicate with other healthcare professionals and social services (Bunn et al., 2016). These are key supports that Nav-CARE volunteers are trained to provide. There are significant differences between Nav-CARE and existing dementia navigation programs, which should be considered when adapting the Nav-CARE program to support caregivers of persons living with dementia. In many dementia navigation programs, coordinators work with large caseloads, are employees, receive support from clinical specialists, and are provided through a combination of telephone, internet and in-person support (Amjad et al., 2018; Duru et al., 2009; French et al., 2014; Jennings et al., 2019; LaMantia et al., 2015; Morgan et al., 2015; Samus et al., 2014). For example, TCE CTNs are employees and manage large caseloads (Bernstein et al., 2019). In contrast, Nav-CARE volunteers work in unpaid positions and provide support to small panels (e.g., 1:1 or 1:2). However, the success of TCE was not attributed to working with large caseloads. As such, utilizing trained volunteer navigators to support small panels may also be an appropriate approach. Collaborative support from clinical dementia specialists is essential as it is noted as a key facilitator of the success of coordinators and dementia navigation programs more generally (Amjad et al., 2018; Berstein et al., 2019; Duru et al., 2009; French et al., 2014; Jennings et al., 2019; LaMantia et al., 2015; Morgan et al., 2015; 45 Samus et al., 2014). Nav-CARE does not collaborate with a team of clinical specialists with expertise in specific chronic conditions. However, its volunteers receive support from the Nav-CARE team, which includes PhD-educated professionals with nursing backgrounds and/or expertise in volunteerism and navigation. Additionally, Nav-CARE is implemented at hospices, where a volunteer coordinator at each site is supported by interdisciplinary hospice staff. As a result, Nav-CARE may provide support less formal and clinically backed support to volunteers. Although many dementia navigation programs provide support via distance (e.g., over the phone and the Internet), Nav-CARE primarily provides in-person support. Caregivers have repeatedly noted their desire for support through a strong, trusting, and consistent relationship (Black et al., 2019; De Cola et al., 2017; Ducharme et al., 2014; Morrisby et al., 2018; McCabe et al., 2016; Tatangelo et al., 2018). Establishing this relationship may be enhanced by in-person visits, such as those provided through Nav-CARE. 2.4 Literature Review Summary This review summarized the unmet needs of caregivers of persons living with dementia, existing interventions to address their needs, and specifically dementia navigation programs. This information can guide the adaptation of Nav-CARE to support caregivers of persons living with dementia. Caregivers have many interrelated needs that relate to personal health and wellbeing, knowledge, and formal support services. However, the specific aspects of these needs are highly individualized and vary depending on each personâs circumstances. Interventions to address caregiver needs require strong continuity of care from a provider who is well educated about dementia, has established a strong and trusting relationship with the caregiver and person living with dementia, and who will provide knowledge to caregivers through a holistic and 46 personalized approach that is tailored to dyadsâ unique personal needs. While there is variation in the efficacy of interventions across outcomes, there is sufficient evidence to guide the development of future programs to address the needs of caregivers. Psychoeducational, psychosocial and social support, and multicomponent interventions consistently result in positive impacts on a variety of outcomes (Huggins et al., 2023). However, the most impactful combination of specific interventions that should be utilized in multicomponent interventions is unclear (Huggins et al., 2023). Despite this uncertainty, the repeated success of psychoeducational, and psychosocial and social support interventions suggests that these components should be utilized in conjunction with one another in multicomponent interventions that are tailored to the needs of individuals. To accomplish this, future programs need to provide adequate time for caregivers and volunteer navigators to develop meaningful relationships in which the caregiver feels comfortable to share their needs, and the volunteer navigator can truly understand them. While there are existing dementia care navigation programs, many are primarily focused on providing support directly to persons living with dementia, and providing support to caregivers is of secondary focus. However, when programs focus sufficiently on caregiversâ needs (e.g., TCE), caregivers and persons living with dementia experience positive outcomes. As Nav-CARE integrates core navigation principles, addresses unmet needs of caregivers and persons living with dementia, and shares similarities with existing dementia navigation programs, it may be feasible to adapt Nav-CARE to support caregivers of persons living with dementia. 47 Chapter 3: Studies 3.1 Introduction: Study One and Study Two This research aims to develop an adaptation of the Nav-CARE program to meet the needs of caregivers of persons with dementia. Two objectives will guide this research in making these adaptations: (1) developing competencies and curriculum to train volunteer navigators and (2) assessing the feasibility of adapting the Nav-CARE program to support caregivers of persons living with dementia. To accomplish the first goal, the first study consisted of a modified e-Delphi method in which questionnaires were administered to an expert panel of individuals with lived experience as caregivers of persons living with dementia, and/or expertise in volunteerism, dementia and navigation. This process established consensus on caregiversâ needs and the competencies volunteer navigators needed to be trained in to meet their needs. The second goal of this research was accomplished by conducting a six-month pilot feasibility study of the adapted Nav-CARE program in which volunteer navigators engaged in visits with caregivers bi-weekly for 1-2 hours. The feasibility and acceptability of this program was evaluated using semi-structured interviews, questionnaires, and volunteer visit reports. This research ensured that the development of the adapted Nav-CARE program was evidence based and any necessary modifications to the program could be made prior to widespread implementation. 3.2 Ethics While this research was considered minimal risk, important ethical considerations that relate to personhood and relationship centered care should be highlighted. Both Study One and Study Two required considerations of personhood and relationship centered care, which presented challenges that related directly to data collection. As such, in Study One, it was 48 essential to include the voices of people with lived experience. Therefore, an Advisory Board of caregivers was established to ensure questionnaire language was appropriate and inclusive. In Study Two, ensuring that the voices of caregivers and persons living with dementia were valued and considered in assessing the feasibility of this program was pertinent. Therefore, efforts were made to ensure that data collection facilitated developing a meaningful understanding of the experiences of caregivers and persons living with dementia, and the interconnectedness of their experiences and needs. These efforts ensured that the feasibility of the program was not evaluated on the experiences of volunteers alone. Further, as caregivers often experience burden, efforts were made to ensure that data collection was not onerous. Therefore, caregivers identified as key informants were interviewed during endpoint data collection to fill specific gaps of knowledge rather than unnecessarily interviewing all caregivers. I will now present the methods, findings, and discussion for Studies One and Two. Unlike traditional theses formats in which methods, findings, and discussion are presented sequentially; to enhance readability I will discuss Studies One and Two separately within this chapter. 3.3 Study One: Modified E-Delphi Study The research approach used in this phase was a modified e-Delphi (electronic). The Delphi method is defined as âa multi-staged survey which attempts ultimately to achieve consensus on an important issueâ (Keeney et al., 2011, p.3). In this study, this method was used to achieve consensus on caregiversâ needs and competencies that volunteer navigators must be trained in to meet these needs. This modified e-Delphi study was published in Dementia: The International Journal of Social Research and Practice and is referenced throughout the following section (Huggins et al., 2024). 49 3.3.1 Methods This modified e-Delphi study consisted of administering three questionnaires in sequence to an expert panel. This study utilized a modified e-Delphi method as the approach to designing the first questionnaire was different from that of a standard e-Delphi method. Typically, the first questionnaire is developed inductively based upon first round feedback (Keeney et al., 2011). In this study, the first questionnaire was developed based upon the rapid review of systematic reviews examining caregiversâ needs outlined in the literature review (Huggins et al., 2023). With such a strong body of evidence currently in existence, this was a more rigorous way of beginning the consensus process. Further, this initial survey was piloted by an Advisory Board consisting of four caregivers of persons living with dementia to ensure appropriate language was used and caregiversâ needs were accurately reflected. 3.3.1.1. Sample and Recruitment. Panelists were recruited through email using convenience sampling from July â November 2021. Individuals were identified through personal and professional networks of the Nav-CARE team and by reviewing literature to identify researchers publishing on topics relating to dementia caregiving. An invitation to participate was sent through email to 100 experts with lived experience as a caregiver of a person living with dementia, and/or expertise in volunteerism, dementia and navigation (see Appendix C). Panelists were also recruited through the networking event Dementia Ventures Celebration at Balaclava Park, in Vancouver, British Columbia. A member of the Nav-CARE team attended the event and shared information with 50 individuals working in the field as well as caregivers of persons living with dementia in the form of informal conversations and recruitment cards (see Appendix B). A total of 35 experts completed the written consent form (see Appendix C). 3.3.2 Data Collection and Analysis Following recruitment, the three questionnaires were administered sequentially to the expert panel, starting with the first questionnaire (see Appendix C). All questionnaires were administered through the secure online survey software, Qualtrics (Qualtrics, Provo, UT). Sequential questionnaire links were emailed directly to panelists who were provided with one month to respond to each questionnaire. A maximum of three reminder emails were sent to panelists. After one month, if a response was still not received the panelist was considered lost to follow up. This process took place over a six-month period to allow for data analysis and survey development between administering questionnaires. All data were analyzed by myself (MS) and reviewed by the Nav-CARE Program Manager and Knowledge Translation Lead, Dr. Gloria Puurveen (GP), and Nav-CARE co-founder, Dr. Barbara Pesut (BP). Although there has been significant controversy over using means with ordinal-level data, even when anchored in numbers, there is substantial support for using the mean in this context, as it can provide valuable insights when applied appropriately (Sauro, 2016). Many e-Delphi studies present ordinal-level data using means, as they can demonstrate the ranking of statements in order of importance (Keeney et al., 2011). As such, it is common to use means when the scale contains both numbers (e.g., 1-5) alongside descriptions (e.g., importance and appropriateness). In this study, the use of means helped to illustrate some of the variability in the findings (e.g., skewed responses) that 51 were not evident in other measures of central tendency. However, the modes and frequencies are also reported for further clarity and context. 3.3.2.1 First Questionnaire. The goal of the first questionnaire was to establish consensus on the importance of caregiversâ needs. Panelists were instructed to contextualize these needs as being met through assistance from a trained volunteer navigator. A list of needs statements was developed from the comprehensive rapid review and consulting with an Advisory Board as described previously. This list was categorized into six themes. Panelists were asked to rate the importance of each need statement on a Likert scale of 1-5 (i.e., (1) not at all important, (2) slightly important, (3) moderately important, (4) very important, (5) extremely important). All responses were entered into SPSS software as separate variables to allow for analysis (Keeney et al., 2011). Descriptive statistics were run on all statements and consensus was defined as 60% of respondents rating the statementâs importance as 3 or greater. If a needs statement did not achieve consensus, it was removed from the list of needs that would be provided in the second questionnaire. For each of the six themes, panelists were asked to provide a description of additional caregiver needs they believed were important but were not included in the questionnaire. All responses were quoted verbatim, placed in a Word document and analyzed manually using content analysis (Keeney et al., 2011). Statements were reviewed to determine if they were similar or dissimilar and grouped together or separated accordingly (Keeney et al., 2011). Following this grouping, each statement was reviewed again to determine if and how similar statements could be collapsed into succinct summary statements (Keeney et al., 2011). Focus 52 was placed on ensuring the summary statements were as close to the original wording as possible. Once summary statements were created, each statement was organized into categories to reflect key aspects of the responses (Keeney et al., 2011). Thematic labels were established by reviewing the statements in each category collectively to determine the most appropriate label for the grouping. 3.3.2.2 Second Questionnaire. The second questionnaire focused on establishing the knowledge, skills, and abilities volunteer navigators need to be trained in to support caregivers in meeting their needs. To accomplish this, the thematically organized list of needs statements developed based upon responses to the first questionnaire were provided to panelists. Panelists were asked to provide the necessary knowledge, skills, and abilities in an essay response box. All statements were analyzed using content analysis following the same process used in the first questionnaire (Keeney et al., 2011). Thematic category labels and summary statements that were developed were used as the competency categories and competency statements presented in the third questionnaire. 3.3.2.3 Third Questionnaire. The third questionnaire focused on gaining consensus on the appropriateness of each competency statement. Panelists were provided with a thematically organized list of competency statements that was developed based upon responses to the second questionnaire. Panelists were asked to rank the appropriateness of each item on a Likert scale ranging from 1-5 (i.e., (1) not at 53 all appropriate, (2) slightly appropriate, (3) moderately appropriate, (4) very appropriate, (5) extremely appropriate). All responses were entered into SPSS software as separate variables to allow for analysis (Keeney et al., 2011). Descriptive statistics were run on all variables and consensus on the appropriateness of competencies was determined using the same process as the first questionnaire. Panelists were also asked to provide a list of resources at the community, provincial, and national level that they found to be beneficial to caregivers through previous experiences. 3.3.3 Findings The expert panel consisted of 35 individuals of diverse ages, areas of expertise and years of experience. All panelists (n=35) responded to the first and second questionnaires. 30 panelists responded to the final questionnaire, which reflects a 16.6% attrition rate. The majority of panelists were female (n=34). Importantly, 37.1% of panelists self-identified as caregivers of persons living with dementia. All panelist characteristics are provided in Table 1: E-Delphi Panelist Characteristics for E-Delphi. Table 1: E-Delphi Panelist Characteristics N % of respondents Age 25-34 2 5.7% 35-44 4 11.4% 45-64 17 48.6% 65+ 12 34.3% Area of Expertise Family and/or friend caregiving 13 37.1% Clinical practice 9 25.7% Navigation 6 17.1% 54 N % of respondents Dementia 5 14.3% Volunteerism 2 5.7% Years of Experience 1-15 years 22 59.1% >15 years 13 40.9% Gender Male 1 2.9% Female 34 97.1% 3.3.3.1 First Questionnaire: Caregiversâ Needs. Panelists rated the importance of forty-three caregiversâ needs statements organized into six distinct categories that contextualized these statements (see Table 2: E-Delphi Consensus on Caregiversâ Needs). All needs statements achieved 80-100% consensus, exceeding the minimum 60% consensus threshold. Therefore, all statements were included in the second questionnaire and final needs statement list. Modes ranged from 3-4 for all needs statements, which indicated that most panelists rated needs as either âmoderately importantâ or âvery importantâ. All needs statements had a range of 2, 3 or 4 indicating some variation of responses. The mean of all needs statements ranged from 3.36 - 4.91 indicating that the importance of each need was consistently rated highly. The needs statement with the highest average importance rating was under category (6) Healthcare Support; âidentifying providers that can help them [caregivers]â. Descriptive statistics for each needs statement are provided in Table 2: E-Delphi Consensus on Caregiversâ Needs. Content analysis of qualitative responses resulted in the development of three additional needs statements (see Table 2: Consensus on Caregiversâ Needs). 55 Table 2: E-Delphi Consensus on Caregiversâ Needs Domain Importance Rating Mode Missing Data Mean 1.Connecting through supportive relationships Develop/strengthen relationships with the following individuals/groupsâ¦ Percentage of respondents who rated item 3-5 on a 5-point scale Other caregivers 91% 4 0 3.97 The person living with dementia 97.1% 5 0 4.23 Their family members 88.2% 4 1 3.85 Their friends 78.8% 4 2 3.36 Their wider social circle (e.g., employer, childrenâs teacher, school counsellor, neighbor) 81.8% 4 2 3.36 Their healthcare providers 97.1% 5 0 4 *Additional needs statement developed from qualitative responses to Questionnaire 1: It is important to have someone (e.g., a trained volunteer) assist caregivers in identifying and negotiating stigma associated with dementia caregiving 2.Physical and Emotional Health Assist caregivers in meeting the following personal physical and emotional health needsâ¦ Engage in enjoyable activities 80% 4 0 3.54 Listen to their experiences and concerns 97% 5 0 4.60 Help identify their physical health needs 94.3% 4 0 4 56 Domain Importance Rating Mode Missing Data Mean Help identify their emotional health needs 100% 5 0 4.46 Help identify resources to support their physical health needs 100% 5 0 4.47 Help identify resources to support their emotional health needs 100% 5 1 4.60 Help to stay and/or become physically active 97% 4 0 4.03 Provide support with experiencing grief 100% 5 0 4.54 Help to access resources to manage chronic health conditions (e.g., depression, anxiety, heart conditions) 100% 5 0 4.37 Encourage the communication of personal and emotional needs 100% 5 0 4.60 3.Practical Help Assist caregivers with finding help to meet the following personal needsâ¦ Making adaptations to caregiversâ homes to accommodate the person living with dementia 100% 4 0 4.06 Doing home maintenance 97% 4 0 3.91 Cooking 94.3% 3 0 3.63 Cleaning 94.3% 3 0 3.80 Completing yard work 88.6% 3&4 0 3.63 57 Domain Importance Rating Mode Missing Data Mean Shopping and errands 97.2% 4 0 3.83 Completing paperwork and applications for support services 100% 5 0 4.37 4.Finding and gaining access to care related resources Assist caregivers with finding and accessing care-related resourcesâ¦ Programs that support their needs (e.g., health authority services, respite, support groups, financial assistance) 100% 5 0 4.63 Health assessments for the person living with dementia (e.g., cognition assessments if their condition seem to be worsening, occupational therapist assessments for the physical environment) 97% 5 0 4.51 Consistent and coordinated support from healthcare providers (e.g., from the dementia diagnosis onwards) 100% 5 0 4.63 After hour programs (e.g., someone to call for support, someone to come over to help with care outside of regular work hours) 100% 5 0 4.51 Tailored programs that are specific to the needs of the person living with dementia 97% 5 0 4.29 Comprehensive local support agencies (e.g., Alzheimerâs Society) 94.3% 4 0 4.20 58 Domain Importance Rating Mode Missing Data Mean A document outlining the necessary personal information about the person living with dementia that is required to advocate on their behalf in a variety of ways 97.1% 5 0 4.29 *Additional needs statement developed from responses to Questionnaire 1: It is important to have someone (e.g., a trained volunteer) assist caregivers with findings and accessing respite services 5.Information Assist caregivers with finding and accessing information regardingâ¦ Dementia (e.g., risk factors, symptoms, what to expect throughout the disease trajectory, treatment) 94% 5 1 4.29 Engaging in conversations about dementia (e.g., telling their social and professional networks about the dementia diagnosis) 100% 4 1 4.09 Strategies to manage the person living with dementiaâs health (e.g., physical and emotional) 100% 5 1 4.38 Helping the person living with dementia have independence 100% 5 1 4.32 Supporting the person living with dementia with personal care tasks 100% 5 1 4.12 59 Domain Importance Rating Mode Missing Data Mean Making physical adaptations to person living with dementiaâs living environment (e.g., door chimes, removing dangers that may increase their risk of injury) 97% 5 1 4.24 Financial resources and support (e.g., government funding, caregiver tax benefits, subsidized care) 100% 5 1 4.47 *Additional needs statement developed from responses to Questionnaire 1: It is important to have someone (e.g., a trained volunteer) assist caregivers with accessing information about how to improve their skills with computers to increase their access to additional information 6. Healthcare Support Assist caregivers in meeting their healthcare related needs (for themselves and the person living with dementia)â¦ Talking to healthcare providers 100% 5 2 4.39 Identifying providers that can help them 100% 5 2 4.91 Booking and scheduling appointments 93% 4 2 4 Finding health region specific resources 97% 5 2 4.85 Informing healthcare providers about their specific circumstances and needs 97% 5 2 4.73 Filling out healthcare paperwork 93% 5 2 4.24 60 Based on importance ratings and qualitative responses, a final list of forty-six needs statements was developed. The similarities among needs statements were assessed and statements were re-categorized into six thematic groupings: (1) relationship needs, (2) personal physical and emotional health needs, (3) caregiversâ various personal needs, (4) finding and accessing care-related resources, (5) accessing information, and (6) caregiversâ and/or persons living with dementiaâs various healthcare related needs. This re-categorization and labeling provided a thematically organized summative list of caregiversâ needs that was provided to respondents in the second questionnaire. 3.3.3.2 Second Questionnaire: Knowledge, Skills and Abilities. The second questionnaire presented all forty-six needs statements organized in the six thematic groupings previously outlined. All qualitative responses were reviewed and thematically organized. Content analysis of these responses resulted in the development of seven competency statement categories, which are provided in Table 3: E-Delphi Examples of Panelistsâ Responses Influencing the Development of Competency Categories. The analysis of these responses also resulted in the development of competency statements that were categorized under each grouping. Competency statements were developed to succinctly and accurately capture the range of responses. All competency statement categories were intended to reflect the range of qualitative responses adequately. For example, a respondent highlighted the importance of volunteer relational skills by stating it would be important for volunteers to have âstrategies to build trust 61 [and] how to define boundaries explaining role of the volunteer navigatorâ. The importance of volunteers having knowledge of dementia was also highlighted as a respondent noted the need for volunteers to have an âawareness of [the] trajectory of dementia, symptoms, and challenges that may be encounteredâ. A respondent also highlighted the importance of having support for volunteers; âa good support system is important for those who may take on these volunteer roles. This can be through their spiritual supports, family or friends but also should be provided by the agency in which they volunteer forâ. Additional examples of direct quotes that contributed to the development of each competency statement category are provided in Table 3: E-Delphi Examples of Panelistsâ Responses Influencing the Development of Competency Categories. In many cases, panelists provided responses that discussed specific programs or aspects of programs they have encountered that were either ineffective or effective at supporting caregivers. These responses highlighted a range of topics such as online resources, support groups, researching resources and respite. The benefits of online resources was highlighted in some responses: âOnline sources are great because you can access them any time, though it is really important to have credible sourcesâ. Other responses noted the impact of support groups: âSpeaking with Doctors and other medical professionals on dementia was helpful in understanding the disease but for me, attending weekly, monthly dementia support groups and workshops run by health care professionals were the most insightful. The sessions helped to remove some of the anxiety and helplessness felt by many caregiversâ. Others highlighted the need for support in researching what resources exist: âI have found very few helpful programs and mostly feel like I'm on my own. I think the problem is that between the needs of my own family and my job, and caregiving, I don't have time to research programsâ. Finally, some responses highlighted the importance of respite: âThe one thing which has been very helpful is 62 weekly respite so that I have some time to do the things I need to do for myself and I know that my dementia person is looked afterâ. As a result of these responses, an open-ended question was added to the third questionnaire to gather additional information on existing programs and supports. Table 3: E-Delphi Examples of Panelist Responses Influencing Competency Development Competency Category Direct Quotes Volunteer Relational Skills Ethical principles of self-determination, autonomy, respect, non-maleficence, beneficence Ability to communicate and willingness to communicate and use approaches which allow the recipient to understand Strategies to build trust [and] how to define boundaries explaining role of the volunteer navigator In relation to areas such as grief and sadness, the volunteer navigator not only needs to know the resources in their local community but must understand proper communication strategies, how to actively listen and be able to recognize if the dementia caregiver requires professional help following a discussion (i.e., becoming triggered or at risk of harming themselves) Supporting Caregiver Well-Being Ability to help caregivers determine what needs are Ability to discern when assistance may be useful and how to introduce ideas in a gentle, empowering way 63 Competency Category Direct Quotes Supporting Care Dyad Know and understand what the patterns of communication are to be able to develop the relationship, particularly in what kinds of circumstances the caregiver interacts with HCPs (reactive vs proactive) Collaborative approach, tailoring supports to an individualsâ situation Identifying and Assisting with Accessing Healthcare Services Strong knowledge of the healthcare system within their areas â including the gap and services and what other programs are available to fill those gaps (if any). It would be amazing if the navigator could actually make these connections and set up the services as I find that care partners are so overwhelmed with day-to-day care that they donât have time to make phone calls and investigate options Good âresearcherâ of resources both in their community and outside Knowledge of Dementia Studying the uniqueness of the dementia-related focus in healthcare Should have good working knowledge of dementia and the complications of the disease and the challenges caregivers encounter when working with dementia Awareness of trajectory of dementia, symptoms, and challenges that may be encountered Know where to find credible information about dementia; assist caregivers to access that information; access comprehension of information and connect caregivers with persons who can answer their questions 64 Competency Category Direct Quotes Knowledge of Dementia (Stigma) Awareness of the stigma encountered by persons living with dementia and their caregivers Strategies to address stigma Be able to unpack own biases related to dementia Co-develop a plan to frame/negotiate experiences related to stigma Support for Volunteers A good support system is important for those who may take on these volunteer roles. This can be through their spiritual supports, family or friends but also should be provided by the agency in which they volunteer for Workshops/groups on the topics of grief, vulnerability, depression, anxiety 3.3.3.3 Third Questionnaire: Appropriateness of Competencies. The third questionnaire presented a list of all competency statements grouped into the seven competency statement categories outlined previously. Based on responses to this questionnaire, all competency statements remained on the list as they were deemed appropriate with 83.33% receiving 100% agreement ratings. Appropriateness ratings for competency statements had ranges of 1,2,3 or 4, which indicated variation among responses. Modes for all competency statements ranged from 3-5, which indicated that the appropriateness of statements were often highly rated with some variation. The means for all competency statements ranged from 3.73 â 4.9, which indicated consistently high appropriateness ratings. The needs statement with the highest average appropriateness rating was âcommunicate effectively with caregivers 65 and persons living with dementia" in the category of Volunteer Relational Skills. Descriptive statistics for each competency statement are provided in Table 4: E-Delphi Consensus on Volunteer Navigator Competencies. Based on these responses, a final list of forty-one core competencies was developed. Responses to the additional qualitative question regarding the efficacy of existing programs were used to develop a resource list. Table 4: E-Delphi Consensus on Volunteer Navigator Competencies Domain Appropriateness Rating Mode Mean Missing Data 1.Volunteer Relational Skills Percentage of respondents who rated item 3-5 on a 5- point scale Communicate effectively with caregivers and persons living with dementia 100% 5 4.90 0 Assess caregiversâ and persons living with dementiaâs physical, social and emotional needs 93.1% 4&5 4.07 0 Determine caregiversâ preferred ways of communication 100% 5 4.52 0 Support caregivers while being open, empathetic, compassionate, and non-judgmental 100% 5 4.79 0 Develop positive conversations about aging and memory loss 96.6% 4 4.10 0 66 Domain Appropriateness Rating Mode Mean Missing Data Understand ethical volunteer/client relationships including prioritizing confidentiality 100% 5 4.79 0 2.Supporting Caregiver Well-Being Determine how to support caregivers in establishing and maintaining social connections 97% 4 4.17 0 Identify creative ways to provide adequate support to caregivers 100% 4 4.17 1 Identify the âbig pictureâ issues and be able to prioritize needs/tasks 97% 4 4.10 0 Identify common emotional experiences caregivers may be encountering and when to assist caregivers in accessing professional help 100% 4 4.30 0 Build capacity in supporting caregivers and persons living with dementia with grief, vulnerability, depression and anxiety 93.3% 4 4.13 0 Assist caregivers in learning and engaging in self-advocacy 93.1% 5 4.10 1 Assist caregivers with utilizing technology (e.g., computer searches) 97% 4 3.97 0 67 Domain Appropriateness Rating Mode Mean Missing Data Assist caregivers in communicating about grief and burnout 97% 4 4.23 0 Assist caregivers in self-assessing their personal health and well-being 100% 5 4.33 0 Assist caregivers in determining their willingness to accept support from different resources and their preferred way to engage with and/or access these resources (e.g., a caregiver may prefer online support, a caregiver may not want support from a specific organization) 93.3% 4&5 4.03 0 Identify respite options and ways to assist caregivers in accessing them 100% 4&5 4.30 0 3.Supporting the Care Dyad Determine what is meaningful to the care dyad 100% 4&5 4.30 0 Determine the best way to build a relationship with the care dyad (e.g., what kind of communication works best, how they like to interact with healthcare providers) 100% 4 4.37 0 Assess and assist caregivers in determining what relationships may need strengthening (e.g., with extended family members, healthcare providers, the care dyad) 97% 3 3.73 0 68 Domain Appropriateness Rating Mode Mean Missing Data Assist caregivers in navigating conflict with the person living with dementia and/or family members 83.3% 5 3.87 0 Advocate to meet the dyadâs needs 100% 4 4.17 0 Assist caregivers in determining quality-of-life concerns for themselves and their person living with dementia 100% 4 4.37 0 4.Identifying and Assisting with Accessing Healthcare Services Know caregiver and dementia support services available in the community and online (e.g., identifying beneficial resources at the community, provincial and national level) 100% 5 4.47 0 Identify how the healthcare system functions (especially regarding dementia related services) and assist caregivers in developing their understanding 97% 5 4.30 0 Identify services and assist caregivers in accessing them (e.g., completing paperwork and required forms, accessing financial resources and supports) 97% 5 4.33 0 Assist caregivers in overcoming barriers to accessing various services 100% 5 4.43 0 Assist caregivers with planning access to services they may need in the future 100% 4 4.23 0 69 Domain Appropriateness Rating Mode Mean Missing Data Assist caregivers in tracking relevant healthcare information regarding the person living with dementia 93.1% 4&5 4.07 1 5.Knowledge of Dementia Provide strategies and support for engaging in challenging conversations about dementia (e.g., advanced care planning, changing abilities) 100% 5 4.37 0 Communicate information about dementia with caregivers and their social networks (e.g., help to explain what dementia is and/or what the disease trajectory entails to members of the caregiversâ social network) 93.3% 4 3.97 0 Identify credible sources of information related to dementia and various associated health conditions 100% 5 4.37 0 Assist caregivers in accessing information about dementia 100% 4 4.30 0 Assist caregivers in contacting providers who can inform them about dementia 93.3% 4 3.93 0 Assist caregivers in coping with symptoms of dementia and challenges associated with disease progression 96.6% 5 4.34 1 6. Knowledge of Dementia Stigma 70 Domain Appropriateness Rating Mode Mean Missing Data Identify personal biases related to dementia 97% 5 4.27 0 Assess how stigma is encountered by caregivers and persons living with dementia 100% 4 4.40 0 Assist in the co-development of a plan to negotiate and respond to experiences related to stigma 96.6% 4 4.28 1 7.Support for Volunteers Build capacity to reflect on your experiences 97% 5 4.40 0 Determine how to practice self-care and self-compassion while in a volunteer role 100% 5 4.73 0 Build capacity in setting boundaries between yourself and the caregiver 100% 5 4.79 1 3.3.3.4 Final Needs and Competency Statements. Through this modified e-Delphi study, two distinct comprehensive lists were developed: 1) Caregiversâ needs and 2) Volunteer navigator competencies (see Appendix A). Collectively, these lists outline the needs of caregivers that should be addressed through a volunteer-led navigation program and the competencies volunteer navigators must be trained in to meet those needs. This information served as the foundation for developing a volunteer navigator training manual used in Study Two to train volunteer navigators. The resource list outlining programs 71 panelists found to be beneficial can be provided to volunteer navigators as a tool to assist them in supporting caregivers. 3.3.4 Discussion The purpose of Study One was to establish consensus regarding caregiversâ needs and the competencies volunteer navigators must be trained in to meet them. This study established that volunteer navigators could support caregivers to meet needs relating to six domains: 1) relationship needs, 2) personal, physical, and emotional health needs, 3) caregiverâs personal needs, 4) finding and accessing care-related resources, 5) accessing information, and 6) meeting healthcare related needs. It also established the competencies volunteer navigators should be trained in, which relate to six domains: 1) volunteer relational skills, 2) supporting caregiver well-being, 3) supporting the care dyad, 4) identifying and assisting with accessing healthcare services, 5) knowledge of dementia and stigma, and 6) support for volunteers. These needs and competencies align with dementia navigation literature outlined above, which highlights the need for programs to support caregivers, provide emotional support, coordinate with primary care providers, and tailor education and resources to care dyadsâ unique needs. Further, a navigation program that focused on supporting the person living with dementia rather than the caregiver found that work was often done with caregivers and much of the intervention success was attributed to supporting caregivers (Bernstein et al., 2020). All competencies developed through this study require an understanding of the experiences of care dyads. However, three competencies, knowledge of dementia and stigma, supporting the care dyad, and identifying and assisting with accessing healthcare services require 72 additional consideration and understanding of the dementia journey that is beyond one of a typical volunteer. For example, other volunteer roles such as meal delivery or cleaning services may not have the opportunity or need to develop deep relationships between volunteers and caregivers. The volunteer navigator is uniquely positioned to support the dyad as they will engage in consistent visits over a long period of time, get to know dyads personally, understand how dementia has impacted intimate aspects of their lives and ultimately develop a meaningful relationship. These nuances impact the ways in which volunteers, caregivers, and persons living with dementia interact with one another and the services in their communities. As such, volunteer navigator training needs to be thorough to ensure volunteer navigators can address the dyadâs needs, and improve caregiversâ experiences the care of persons living with dementia. 3.3.4.1 Developing Knowledge of Dementia & Dementia Stigma. The competency, knowledge of dementia, generally refers to volunteer navigators supporting caregivers to ensure they have knowledge of multiple aspects of the disease and are able to communicate this with their wider social communities. The need for improved knowledge among caregivers and their wider social communities is well-established in dementia literature (Ebert et al., 2020). Caregivers often highlight their lack of understanding of dementia and desire for more information on caregiving-related topics (Peterson et al., 2016). It is important to ensure caregivers have adequate knowledge of the disease as this can develop caregiver confidence, positively impact their experiences of burden, anxiety and depression, improve the care of persons living with dementia and delay placement in long-term care facilities (Peterson et al., 2016; Han et al., 2021; Teichmann et al., 2022). However, there are several complex barriers to improving caregiversâ knowledge (Peterson et al., 2016). For example, information from primary 73 care providers, who are often the key point of contact, can be limited and few educational programs are widely accessible (Peterson et al., 2016). Further, there may also be a lack of knowledge of dementia in lay persons who have not been impacted by the disease or engaged in dementia education, which may contribute to developing and perpetuating stigma (Kim et al., 2019). When individuals lack a deep understanding of the caregiving experience, this can negatively impact relationships between caregivers and their social networks (Ashworth, 2022). Further, this lack of understanding could perpetuate harmful perceptions of dementia and what it means to be a caregiver. Incorrect public perceptions of persons living with dementia are often framed in ways that degrade personhood and create stigma, such as referring to them as being sentenced to a âliving deathâ with little to no future potential and suggesting they will experience inevitable deficit and decline (Ashworth, 2022; Orsulic-Jeras et al., 2019). Dementia stigma is important to address as it has tangible impacts on the health of caregivers and persons living with dementia (Kim et al., 2019). For example, experiences of stigma can contribute to increases in physical and psychological symptoms of dementia (Ashworth, 2022), and caregivers can experience shame and guilt, anticipatory grief, social exclusion, increased burden and develop negative self-perceptions (Ashworth, 2022; Su & Chang, 2020). As such, it is important that caregivers and people within their communities have knowledge of dementia to establish environments where social inclusion and positive conversations can take place, caregivers can be supported, and stigma and misconceptions can be addressed (Kim et al., 2019). Volunteer navigators are uniquely positioned to play an instrumental role in improving knowledge of dementia among caregivers and communities. Providing training to volunteer navigators regarding specific information about dementia, such as different diagnoses, disease trajectories and common behaviors can contribute to informed volunteer-caregiver discussions. 74 With this knowledge, caregivers will be able to engage in conversations with their wider social communities about the realities of dementia and share information that may not be well-understood. The information used to inform volunteer navigators could also be provided directly to caregivers. However, caregivers receiving specific and relevant information from the volunteer navigator, who has received education and conducted independent research, may contribute to reducing caregiversâ need to read through large amounts of educational material. Further, volunteer navigators can improve their personal knowledge of dementia by interacting and establishing relationships with caregivers and persons living with dementia (Harris & Caporella, 2014; Kim et al., 2019). Through volunteer-caregiver engagement and the development of relationships, knowledge can go beyond a basic understanding of what constitutes dementia and instead include the nuances of what a dementia diagnosis means personally for those who are impacted (Ebert et al., 2020). This personhood-based knowledge is essential to improving comfort with dementia and reducing the perpetuation of stigma (Ebert et al., 2020). Findings from this study suggest that volunteers can support caregivers in using their knowledge in interactions with healthcare providers. Caregivers have highlighted a lack of dementia knowledge among healthcare providers (Peterson et al., 2016). This has partly been attributed to the lack of dementia-specific education across provider programs (Keane et al., 2020). This is significant as mistrust in providersâ knowledge could perpetuate negative experiences of caregiving such as increases in caregiver stress regarding the quality of care the person living with dementia is receiving, and a lack of opportunities for caregivers to learn more about the disease through communication with providers (Peterson et al., 2016). Improving the knowledge of dementia among healthcare providers is a complex and challenging task. However, 75 volunteers can support caregivers to access information on dementia, which will enable them to plan for visits with healthcare providers by identifying the relevant questions they need to ask, symptoms they want to discuss, and programs they may want more information on. Overall, informed discussions about dementia, which may occur as a result of increased knowledge in volunteer navigators and caregivers, could reduce the spread of misinformation, the perpetuation of stigma and negative interactions with healthcare providers. 3.3.4.2 Supporting the Care Dyad. Participants in this study highlighted that caregivers need support for their own personal, physical, and emotional health, as well as the person living with dementia. As such, supporting the dyad is a competency that requires volunteers to consider the best ways to engage with the dyad, honour caregiversâ needs, and still respect the personhood of those living with dementia. Although volunteer navigators are focused on supporting caregivers and may not directly support persons living with dementia, their role impacts the personhood of persons living with dementia in a variety of ways. At times, the volunteer navigator may interact with caregivers in the presence of a person living with dementia, which will require them to consider their choices in physical and verbal communication in order to respect personhood (Kim & Song, 2021). For example, volunteers should be able to tailor their communication styles to the unique needs of the dyad, and encourage persons living with dementia to share their perspectives while acknowledging their feelings (Kim & Song, 2021). Volunteer navigators may support caregivers with decision making about the care of the person living with dementia. If volunteer navigators provide support to the caregiver early on in the journey, they may be able to encourage conversations between the dyad about quality of life goals in advance of acute events (Whitlatch et al., 2018). The caregiver may need to consider past conversations about the person living with 76 dementiaâs quality of life goals, as well as their own quality of life goals and caregiving capacity (Tranvag, Petersen & Naden, 2015; Waligora, Bahouth & Han, 2019). If these conversations do not take place, caregivers may be in a position in which they are required to make decisions based on what they believe the person living with dementia would want. In some cases, the values of the person living with dementia and caregiversâ own needs may be conflicting (Miller et al., 2017). Making these decisions can be extraordinarily challenging for caregivers and contribute to emotional distress (Fowler et al., 2013). Volunteers are in a unique position to support the care dyad and honour personhood as their role requires them to know the caregiver and person living with dementia on a deep and personal level. Personal knowledge about the caregiver and person living with dementia is needed to truly understand their values, complexities that influence decision making, and the best ways to offer support (Kim & Song, 2021). The volunteer navigator role provides the time and space to obtain this level of understanding and develop this relationship. Discussions between volunteers and caregivers that can take place as a result of this relationship may influence how caregivers make decisions, as well as the supports they access to address their own well-being throughout the caregiving journey. Further, volunteer navigators can provide support to caregivers as they experience emotional distress associated with decision-making (Fowler et al., 2013). Healthcare providers are often limited in their ability to understand dyads on this level due to time constraints and other systemic demands (Tilburgs et al., 2018). As a result, it may be challenging for them to understand the dyadâs unique dynamics and needs, as well as develop a strong and trusting relationship. However, a deep and personal relationship within the healthcare system is one that participants in this study recognize is important to have and be able to support 77 caregivers. As such, volunteer navigators can fill this gap and provide personalized and sensitive support. 3.3.4.3 Identifying and Assisting with Accessing Healthcare Services. Identifying healthcare services and assisting caregivers to access them is a competency that requires volunteers to provide meaningful navigational support. Participants in this study identified the importance of volunteer support to meet caregiversâ personal, emotional, and physical health needs, which are often met through resources. They also noted the importance of volunteer support in finding and accessing these resources. Caregivers require support in accessing many resources, such as education, counselling, support groups, and physical activity classes (Orsulic-Jeras et al., 2019). As such, it is important to train volunteers to navigate in these areas. For example, volunteer navigators need to be knowledgeable of the resources in their community and know how to encourage caregivers to engage with them. Participants in this study expressed that one of the most important services to support the caregiving journey is respite. Respite can contribute to decreasing negative outcomes associated with the caregiving role such as burden and stress (Vandepitte et al., 2016). However, respite services are unavailable or inadequate in some communities (Bieber et al., 2019). There are common substantial barriers to accessing existing respite, which contributes to caregiversâ underutilization of these services (Bieber et al., 2019; Vandepitte et al., 2016). Common barriers include caregiversâ concerns for the comfort of the person living with dementia when placed in long term care or receiving home supports, guilt regarding leaving the person living with dementia, lack of awareness of services, as well as the inadaptability and high cost of services (Gresham, Heffernan & Brodaty, 2018; Harkin et al., 2020; Vandepitte et al., 2016). Further, 78 caregivers may be unaware of or unwilling to acknowledge their own needs and ask for help and lack support to help them do so. Although some of these barriers are a result of systemic issues, volunteer navigators can address some barriers by providing an informed outsider perspective to caregivers. With this perspective, volunteer navigators can encourage caregivers to recognize the potential benefit of respite and other services, as well as highlight the value in addressing their own needs. Volunteers can also support caregivers with practical tasks such as identifying respite services in the community, understanding the paperwork process required to apply for services, and encouraging caregivers to utilize these resources. Although volunteer navigators do not visit directly with persons living with dementia and provide respite services, they can serve as a form of mental respite by engaging in consistent visits, being present, listening, supporting, and developing a meaningful relationship with caregivers that allows them to focus on their own needs. 3.4 Curriculum Development The curriculum development was a collaborative process that all Nav-CARE research team members contributed to. This process was foundational to informing Study Two. To start, the team discussed each competency statement established through the e-Delphi process. For each of these statements, learning objectives (LOs) were developed based upon Kern (1998) six-step approach to curriculum development: 1) problem identification and general needs assessment, 2) targeted needs assessment, 3) goals and objectives, 4) educational strategies, 5) implementation, and 6) evaluation and feedback (Kern, Thomas & Hughes, 2009). Mapping of dementia specific LOs to existing Nav-CARE LOs was conducted to identify overlap, gaps, and components of the existing curriculum that required re-working to fit the dementia context. A 79 detailed outline of this mapping is provided in Table 10: Nav-CARE Competency Mapping in Appendix C: Supplementary Materials. Through this process, three distinct dementia specific topics were identified as requiring additional training content. These topics focused on navigation, communication and quality of life within the context of supporting a care dyad and informed the development of three distinct modules 1) Navigational support for caregivers and persons living with dementia, 2) Communication and 3) Quality of Life. Learning objectives for each of these modules are provided in Table 5: E-Delphi Volunteer Navigator Training Modules and Learning Objectives. The existing Nav-CARE training curriculum covers a range of topics within six distinct modules: 1) The volunteer navigator role, 2) Addressing quality of life concerns, 3) Advocating for clients and families, 4) Facilitating community connections, 5) Promoting active engagement, and 6) Supporting virtual navigation. As the volunteer navigators had already received the original Nav-CARE training, these dementia specific modules were viewed as sufficient to prepare volunteers to adequately support caregivers. Table 5: E-Delphi Volunteer Navigator Training Modules and Learning Objectives Module Learning Objectives Navigational Support for Caregivers and Persons Living with Dementia â¢ Describe relevant resources for caregivers and people with dementia â¢ Describe navigational challenges â¢ Describe potential strategies to overcome them Communication â¢ Identify ways of communicating with caregivers â¢ Identify ways of communicating with people with dementia â¢ Identify ways of communicating with care dyads Quality of Life â¢ Describe examples of quality-of-life concerns of caregivers across the dementia trajectory 80 3.5 Study Two: Pilot Feasibility Study The purpose of Study Two was to conduct a pilot feasibility study to assess the feasibility of adapting Nav-CARE to support caregivers of persons living with dementia. Pilot feasibility studies are critical components of intervention development, adaptation, and testing (Aschbrenner et al., 2022). They are conducted during the development and adaptation of interventions to examine the feasibility of the intervention and the methods used to evaluate them to answer whether the intervention can work (Aschbrenner et al., 2022). Pilot feasibility studies typically evaluate aspects of acceptability, usability, appropriateness, practicality, adaptation, and implementation barriers and facilitators, among others (Aschbrenner et al., 2022). Key domains of pilot feasibility studies can include recruitment capability, randomization, retention, assessment procedures, implementation resources, intervention delivery, adherence, and safety, and acceptability, among others (Aschbrenner et al., 2022). Both quantitative and qualitative methods are used in pilot feasibility studies to explore the complexity of interventions with depth while including the perspectives of key stakeholders who are interested in or impacted by the intervention (Aschbrenner et al., 2022). In this study, four key feasibility domains were selected to inform the adaptation of Nav-CARE to support caregivers of persons living with dementia: (1) assessment procedures, (2) implementation resources, (3) intervention delivery, adherence, and safety, and (4) acceptability (Aschbrenner et al., 2022). 81 Table 6: Feasibility Domains and Definitions Feasibility Domain Definition Assessment procedures The extent to which study assessments can be administered as planned; assessment procedures are acceptable to participants; and data collection is complete Implementation resources The adequacy of resources, including time and costs, required to deliver an intervention and conduct the overall study Intervention delivery, adherence, and safety The extent to which an intervention is delivered as intended (i.e., fidelity); participantsâ behavior corresponds with intervention recommendations (i.e., adherence) and can safely be performed (i.e., safety) Acceptability The extent to which an intervention; components of an intervention and/or study conditions, including a waitlist condition, usual care, or inactive control condition are satisfactory Aschbrenner, K. A., Kruse, G., Gallo, J. J., & Plano Clark, V. L. (2022). Applying mixed methods to pilot feasibility studies to inform intervention trials. Pilot and Feasibility Studies, 8(1). https://doi.org/10.1186/s40814-022-01178-x 3.5.1 Methods The pilot feasibility study aimed to answer the following research question: Is it feasible to adapt the Nav-CARE program to support caregivers of persons living with dementia? This research followed five key steps that are recommended to optimize mixed-methods pilot feasibility studies: (1) identify feasibility domains that will be examined, (2) align quantitative and qualitative data sources with the domains, (3) determine the time points for data collection, (4) plan integrative analyses using joint displays to understand feasibility, and (5) establish meta-inferences about feasibility and implications for future research (Aschbrenner et al., 2022). Volunteer navigators were trained in the new dementia-specific training curriculum. 82 Following training, they provided navigation support to caregivers of persons living with dementia by engaging in visits for 1-2 hours bi-weekly over 6 months. Data were collected through volunteer visit reports (collected at the end of each visit), semi-structured interviews (conducted with caregivers and volunteer navigators at midpoint and endpoint), and questionnaires (administered to volunteer navigators at midpoint and endpoint). This mixed methods approach was used to collect different forms of data that focused on the four key feasibility domains (see Table 6: Feasibility Domains and Data Collection Tools). Further, the use of mixed methods facilitated meaningful exploration of the complexities of the intervention, as well as data triangulation and completeness (Aschbrenner et al., 2022). For a comprehensive understanding of feasibility, data collection followed a combined explanatory and convergent approach (Aschbrenner et al., 2022). In some instances, quantitative data (e.g., self-perceived confidence questionnaires) were collected first, followed by qualitative data (e.g., midpoint/endpoint interviews) to expand upon the initial results. In other cases, quantitative and qualitative data (e.g., volunteer visit notes and midpoint/endpoint interviews) were collected simultaneously and integrated to develop a corroborated interpretation. All data are reported in adherence to the Consolidated Criteria for Reporting Qualitative Research (COREQ) Checklist (Tong, Sainsbury & Craig, 2007) (see Appendix C: Supplementary Material). 83 Table 7: Feasibility Domains and Data Collection Tools Feasibility Domains Data Collection Tools Assessment procedures: The extent to which study assessments can be administered as planned; assessment procedures are acceptable to participants; and data collection is complete The extent to which study assessments can be administered as planned is measured by: 1. The response rate of the volunteer navigator experience and self-perceived confidence questionnaire 2. The response rate of the volunteer navigator visit notes 3. The number of eligible participants who completed interviews 4. The researcherâs reflective field notes made throughout the study The extent to which assessment procedures are acceptable to participants is measured by: 1. The response rate of the volunteer navigator experience and self-perceived confidence questionnaire 2. The response rate and completeness of the volunteer navigator visit notes 3. Responses to interview questions regarding their acceptance of data collection tools and the research processes The extent to which data collection is complete is measured by: 1. The response rate and completeness of the volunteer navigator experience and self-perceived confidence questionnaire 2. The response rate and completeness of the volunteer navigator visit notes 3. Data saturation which was achieved when no new themes emerged from participant responses to interview questions 84 Feasibility Domains Data Collection Tools Implementation resources: The adequacy of resources, including time and costs, required to deliver an intervention and conduct the overall study The adequacy of resources (i.e., volunteer navigator training, education, and ongoing support from Nav-CARE) to deliver the intervention is measured by: 1. Responses to questions in the volunteer navigator experience and self-perceived confidence questionnaire regarding volunteer preparedness and ability to provide the service 2. Responses to questions in the volunteer navigator visit notes regarding volunteer navigatorsâ ability to address challenges 3. Responses to interview questions focused on understanding volunteer navigatorsâ experiences completing the training, need for ongoing support from the Nav-CARE team, and caregiversâ perceptions of the volunteer navigatorsâ preparedness The adequacy of time and costs to deliver the intervention and conduct the overall study is measured by: 1. Responses to questions in the volunteer navigator experience and self-perceived confidence questionnaire regarding the time required to provide the service 2. Responses to questions in the volunteer navigator visit notes regarding the time required to travel to the location in which the service was provided and the workload required outside of the visit (e.g., research to identify community resources, study tasks) 3. The frequency in which the volunteer navigator visit notes were completed (i.e., a volunteer navigator visit note was to be completed after every visit to outline the number of visits that took place) 4. Responses to interview questions regarding the time spent engaging in visits and volunteer navigatorsâ workload outside of visits (e.g., 85 Feasibility Domains Data Collection Tools research to identify community resources and research tasks) Intervention delivery, adherence, and safety: The extent to which an intervention is delivered as intended (i.e., fidelity); participantsâ behavior corresponds with intervention recommendations (i.e., adherence) and can safely be performed (i.e., safety) The extent to which the intervention is delivered as intended (i.e., fidelity) is measured by: 1. Responses to questions in the volunteer navigator experience and self-perceived confidence questionnaire regarding volunteer navigatorsâ ability to provide the service 2. Responses to questions in the volunteer navigator visit notes regarding volunteer navigatorsâ ability to provide the service 3. Responses to interview questions regarding volunteer navigatorsâ and caregiversâ perspectives on the volunteer navigatorsâ ability to provide the service The extent to which participantsâ behavior corresponds with the intervention recommendations (i.e., adherence) is measured by: 1. Responses to questions in the volunteer navigator experience and self-perceived confidence questionnaire regarding the types of services volunteer navigators provided 2. Responses to questions in the volunteer navigator visit notes regarding the types of services volunteer navigators provided 3. Responses to interview questions regarding volunteer navigatorsâ and caregiversâ perspectives on the types of services provided by volunteer navigators The extent to which the intervention can be safely performed (i.e., safety) is measured by: 1. Responses to questions in the volunteer navigator experience and self-perceived confidence questionnaire regarding 86 Feasibility Domains Data Collection Tools 2. their confidence in providing the service 3. Responses to questions in the volunteer navigator visit notes regarding issues and/or challenges experienced while engaging in visits Responses to interview questions regarding volunteer navigatorsâ and caregiversâ perspectives on challenges they experienced while engaging in visits Acceptability: The extent to which an intervention; components of an intervention and/or study conditions, including a waitlist condition, usual care, or inactive control condition are satisfactory The extent to which an intervention is satisfactory as measured by: 1. Responses to questions in the volunteer navigator experience and self-perceived confidence questionnaire regarding their satisfaction with their role and their perception of caregiversâ satisfaction with the services provided 2. Responses to questions in the volunteer navigator visit notes regarding their satisfaction with their role and their perception of caregiversâ satisfaction with the services provided 3. Volunteer navigatorsâ responses to interview questions regarding their satisfaction with their role and their perspective on caregiversâ satisfaction with the services provided 4. Caregiversâ responses to interview questions regarding their satisfaction with the services provided by volunteer navigators 3.5.1.1 Research Context. This research took place in partnership with a hospice society in a rural community in Alberta, Canada. This community is classified as rural because it is located outside a population center and has a population density of fewer than 400 people per square kilometer (Statistics Canada, 2021a). The community has a population of approximately 18,772 people (Statistics 87 Canada, 2021b) and serves as a farming hub for surrounding areas. The hospice was selected as a partner as they successfully provided the existing Nav-CARE program, had a strong relationship with the Nav-CARE team, and could take on the research workload. Before confirming the pilot feasibility study site, I met with the Volunteer Coordinator at the hospice on multiple occasions to establish a relationship and discuss the research. Once the study site was confirmed, the volunteer navigator training was provided by GP, and the Nav-CARE co-founder, Dr. Wendy Duggleby (WD). Prior to data collection, each participant (i.e., caregivers and volunteer navigators) was provided with the opportunity to meet with me one-on-one to discuss the research process and goals. During this time, I also informed participants of my personal and professional interests in the work. All data collection was conducted by MS, with support from BP and GP. The hospiceâs Volunteer Coordinator provided day-to-day oversight of the intervention. Evidently, this research was made possible by the efforts of a diverse team within the University and community settings. 3.5.1.2 Recruitment and Consent. Participation in the adapted Nav-CARE program was contingent on participating in the research. Potential volunteer navigator and caregiver participants were identified by the hospice Volunteer Coordinator. She purposively selected current volunteers of the hospice and community members whom she identified as having the potential to work effectively with caregivers of persons living with dementia. Volunteers were required to have been a volunteer navigator with the existing Nav-CARE program for at least one year or have completed the initial training, be able to devote six months to volunteering for approximately one to two hours bi-weekly and be willing to complete one questionnaire and participate in up to two semi-structured interviews over the phone or via Zoom. The Volunteer Coordinator selected 88 caregivers of persons living with dementia within her personal network, as well as those who had previously accessed hospice services. Caregivers were required to be current primary caregivers of a person living with dementia, willing to meet (either virtually or in person) with a volunteer navigator for one to two hours bi-weekly for six months and participate in up to two semi-structured interviews over the phone or via Zoom. Caregivers who had hearing problems to the extent that they could not participate in telephone or Zoom interviews were excluded from participating as we did not have resources to accommodate in-person data collection. Further, volunteers and caregivers were informed that they needed to be comfortable visiting in caregiversâ homes, public places in the community (e.g., coffee shops, restaurants, etc.), and/or over the phone or via Zoom. All volunteer navigators and caregivers who were interested in participating were provided with a brief overview of the research from the Volunteer Coordinator either over the phone, in person, or via email. I received the contact information of individuals who expressed continued interest in participating for further follow-up. Consent forms and information sheets were emailed to potential participants for review. All volunteers interested in participating were provided with an opportunity to discuss the research with me over the phone, on Zoom, or via email. Before completing the consent process, each caregiver was contacted directly over the phone or via Zoom to discuss the study in more detail. Paper copies of the consent forms were provided at the volunteer training session to be signed in person by volunteer navigators. Caregivers who gave verbal consent and requested to sign a paper copy of the consent form were able to do so. Volunteer navigators were provided with paper copies of the consent form to obtain caregiversâ signatures and return them to the research team. Signed consent forms from caregivers were mailed to me directly by the Volunteer Coordinator or emailed directly by 89 participants. Recruitment scripts, information sheets and consent forms are provided in Appendix C: Supplementary Material. The Volunteer Coordinator matched pairs of volunteer navigators and caregivers based on her personal knowledge of everyoneâs history and interests to try and establish pairs that would connect and develop a meaningful relationship. All participants received a $100 honorarium at the end of the study to acknowledge their contributions. 3.5.1.3 Volunteer Training. Volunteer navigators were required to complete the original Nav-CARE training and the dementia-specific training developed through Study One. The dementia-specific training was provided in person by GP and WD at the rural hospice on September 10th, 2022. The training took place for three hours and covered content relating to each of the three dementia-specific modules: 1) navigational support for caregivers and persons living with dementia, 2) communication, and 3) quality of life. PowerPoint presentations, case studies, and role-play exercises were used. Volunteer navigators were able to ask questions throughout the session and were provided with designated time (30 minutes) for questions at the end. The in-person training allowed volunteer navigators to meet one another, share information about community resources, and brainstorm ideas to facilitate communication, engagement, and support within their roles. 3.5.1.4 Intervention. Throughout the six-month study, trained volunteer navigators were instructed to visit with caregivers for approximately one to two hours bi-weekly. Visits were conducted both in person and over the phone at the discretion of the caregiver and volunteer navigator. When 90 conducted in person, visits took place at caregiversâ homes, coffee shops, and restaurants based on the pairsâ preferences. The focus of visits varied among pairs as visits were intended to be individualized, adaptive, and tailored to the unique needs of caregivers and persons living with dementia. However, the universal goal of visits was for the volunteer navigators and caregivers to establish a meaningful relationship in which the caregivers could be supported in meeting their needs, which included accessing resources, engaging with communities, speaking about their concerns, navigating family dynamics, and/or preparing for healthcare appointments, among others. To best meet their needs, pairs participated in tailored visits with unique formats and specific focuses. In some cases, the person living with dementia was present during the visits. However, the focus of the visits remained on supporting the caregivers. 3.5.2 Data Collection and Analysis Data collection occurred multiple times throughout the six-month study and the four following months (see Table 8: Data Collection Tool and Corresponding Timepoints). Data were collected using volunteer navigator questionnaires, volunteer navigator visit reports, and semi-structured interviews with caregivers and volunteer navigators. These data collection tools were adapted from those used in previous Nav-CARE research. All data collection tools are provided in Appendix C: Supplementary Material. In the analysis, quantitative and qualitative data were integrated using a combination of building and merging (Aschbrenner et al., 2022). Building was used as data from quantitative methods (i.e., the volunteer visit reports and self-perceived confidence questionnaires) were used to inform questions in midpoint and endpoint semi-structured interviews (Aschbrenner et al., 2022). Merging was used as all data were compared 91 and related to one another (Aschbrenner et al., 2022). This integration resulted in a nuanced and meaningful understanding of the complexities in the data. Table 8: Data Collection Tools and Corresponding Timepoints Data Collection Tool Timepoint Volunteer Navigator Experience and Self-Perceived Confidence Questionnaire Midpoint Volunteer Navigator Visit Reports Ongoing (i.e., after each visit) Volunteer Navigator and Caregiver Semi-Structured Interviews Midpoint and endpoint 3.5.2.1 Volunteer Navigator Experience and Self-Perceived Confidence Questionnaire. Volunteers completed a midpoint questionnaire assessing their experiences engaging in visits with caregivers and their self-perceived confidence in their role as volunteer navigators. The questionnaire focused on experiences and self-perceived confidence as these topics could provide insight into the key feasibility domains of (1) implementation resources, (2) intervention delivery, adherence and safety, and (3) acceptability (Aschbrenner et al., 2022) (see Table 7: Feasibility Domains and Data Collection Tools). The response rate and data completeness provided valuable insight into the assessment procedures domain (Aschbrenner et al., 2022). Research team members completed the questionnaire to pilot it and identify necessary adjustments. In previous Nav-CARE research, a similar questionnaire was administered to participants at the end of the program (Duggleby et al., 2020). Unfortunately, sample attrition resulted in a small proportion of participants engaging in the questionnaire (Duggleby et al., 2020). To address this potential challenge and explore the efficacy of the assessment procedures, 92 the questionnaire was administered at midpoint. This approach helped determine whether administering the questionnaire at that time was sufficient for collecting complete data and whether it was acceptable to volunteer navigators. To avoid research burden, the questionnaire was not re-administered at endpoint. As such, the questionnaires did not capture a longitudinal understanding of volunteer navigatorsâ experiences and confidence. However, questionnaire data were used to inform interview questions at endpoint, allowing for further exploration of volunteer navigator experiences and confidence through qualitative methods. The questionnaire was developed within Qualtrics, an online survey platform, and a link was emailed directly to volunteer navigators. The questionnaire consisted of a brief participant characteristics section, and 19 content questions split into two groups: volunteer navigator experiences and confidence. The characteristics section included questions about their age, gender, work status, past volunteer experiences, and motivation for participating in the research. The first content grouping contained questions regarding volunteer navigatorsâ experiences engaging in visits with caregivers. Volunteers were asked to respond on a 5-point Likert scale with verbal anchors ranging from strongly disagree to strongly agree (i.e., (1) strongly disagree, (2) disagree, (3) neutral, (4) agree, (5) strongly agree). The second grouping contained questions regarding the volunteersâ confidence in the role. Questions were developed to address the key components of the volunteer navigator competencies and caregiversâ needs lists developed through Study One. As such, the language regarding self-perceived competencies varies from that of the volunteer navigator final competencies list. Volunteers were asked to respond on a 5-point Likert scale with verbal anchors ranging from poor to excellent (i.e., (1) poor, (2) fair, (3) good, (4) very good, (5) excellent). All data obtained through the midpoint questionnaire were entered into SPSS software as separate variables to allow for analysis (Keeney et al., 2011). 93 Descriptive statistics were used to analyze the data, including frequencies, means, and modes (Keeney et al., 2011). This questionnaire is provided in Appendix C: Supplementary Material. 3.5.2.2 Volunteer Navigator Visit Reports. Volunteers were asked to complete visit reports at the end of each visit and submit them via email to the research team. Volunteer visit reports were guided by a template, which requested information on the format of the visits (e.g., in-person, phone call), positive and negative aspects of the visits, the services provided and plans for the next visit. These questions were selected to address the relevant key domains of feasibility: (1) implementation resources, (2) intervention delivery, adherence, and safety, and (3) acceptability (Aschbrenner et al., 2022) (see Table 7: Feasibility Domains and Data Collection Tools). The response rate and data completeness provided valuable insight into the assessment procedures domain (Aschbrenner et al., 2022). The visit reports template is provided in Appendix C: Supplementary Material. I reviewed completed visit reports on an ongoing basis to develop an understanding of volunteersâ needs, the care dyadsâ needs, the focus of visits, and the challenges that needed to be addressed. This information was used to guide discussions in monthly volunteer navigator support meetings and questions in semi-structured interviews. By reviewing these data, I could identify topics that required further exploration and, when needed, could remind volunteers of their experiences to initiate further discussion. All data were analyzed using summative content analysis (Hsie & Shannon, 2005). Summative content analysis is an approach often used to analyze qualitative text data and takes place using two distinct steps: 1) identifying and quantifying the data and 2) interpreting the data to understand the underlying meaning of the content (Hsie & Shannon, 2005). For clarity, these data are presented using descriptive statistics (i.e., frequencies and 94 percentages) and the interpreted meaning of the data is discussed in relation to the data collected through semi-structured interviews and the volunteer navigator experience and self-perceived confidence questionnaire. 3.5.2.3 Volunteer Navigator and Caregiver Semi-Structured Interviews. Semi-structured interviews were conducted as they effectively collect comprehensive qualitative data regarding a participantâs experience, are a qualitative method used in pilot feasibility studies to explore aspects of feasibility with depth (Aschbrenner et al., 2022) and can provide an opportunity for those with lived experience to share their experiences. Semi-structured interviews can address complex issues by providing space for participants to share detailed and important insights (Galletta & Cross, 2013; Taherdoost, 2022). In addition, semi-structured interviews allow researchers to engage with participants directly during the data collection process (Taherdoost, 2022), which may contribute to establishing a relationship that encourages candid conversations. Further, capturing the nuances of participantsâ experiences is challenging using only quantitative methods as deeper exploration is limited (Taherdoost, 2022). Therefore, their experiences may be better understood through qualitative methods. Both volunteer navigators and caregivers engaged in semi-structured interviews at midpoint and endpoint. All interviews were conducted over the phone or via Zoom, audio-recorded and transcribed verbatim using a professional transcriptionist service. Interview transcripts were uploaded onto NVIVO software and analyzed using reflexive thematic analysis (TA) (Braun & Clarke, 2022). Interviews took place for approximately 45 minutes to one hour. Interview questions focused on content that addressed the key feasibility domains of (1) 95 assessment procedures, (2) implementation resources, (3) intervention delivery, adherence and safety, and (4) acceptability (Aschbrenner et al., 2022) (see Table 7: Feasibility Domains and Data Collection Tools). The effectiveness of the assessment procedures was also measured by the number of eligible participants who completed interviews and data saturation. For example, the questions explored various components, including participants' overall experience, the benefits of participating in this research, how volunteers supported caregivers, the most valuable aspects of the program, and any elements of the program or research process that might need adaptation. Interview guides are provided in Appendix C: Supplementary Material. After each interview, I took notes and reflected on the effectiveness and flow of the interview guide to make necessary adjustments. Midpoint interview data were analyzed using TA to identify remaining knowledge gaps. These gaps guided the selection of key informants for endpoint interviews, prioritizing participants who could address them based on factors such as their caregiving stage, the types of challenges they faced, and their personal circumstances. After conducting the endpoint interviews, we achieved a rich and comprehensive dataset sufficient to answer our research question (Braun & Clarke, 2022). Consequently, no further interviews were required. Reflexive thematic analysis (TA) was used to analyze interview data. Reflexive TA is a method that highlights the âactive role of the researcher in coding and theme development, the inevitable subjectivity of these processes, and the importance of the researcher reflecting on their assumptions and practices, and how these might shape and delimit their data analysisâ (Braun & Clarke, 2022, p. 294). This approach emphasizes and values a nuanced understanding of the data that can be complex and contradictory (Braun & Clarke, 2022). Reflexive TA has been used to assess the feasibility and benefits of interventions (Braun & Clarke, 2006). As such, the reflexive components made it an appropriate tool for analyzing these data. A six-phase thematic analysis 96 process was used to explore patterns of meaning within interview data (Braun & Clarke, 2022). The six phases consisted of 1) familiarizing myself with the dataset, 2) coding, 3) generating initial themes, 4) developing and reviewing themes, 5) refining, defining, and naming themes, and 6) writing up (Braun & Clarke, 2022). These phases are non-linear and recursive and require reflexive work throughout the entire process of analysis (Braun & Clarke, 2022). During each of these phases, I used electronic and paper copies of the data, which allowed me to develop different perspectives and insights. When feeling too immersed in the data, I took breaks, moved working locations, and read other material to ensure I was in a fresh and open headspace when engaging with the data. These strategies contributed to my ability to remain present in all stages of the analysis. The process of familiarizing required me to immerse myself within the data and critically engage with it (Braun & Clarke, 2022). To begin immersing myself in the data, each interview transcript was re-read prior to uploading it to NViVO to develop a broad understanding of the content (Braun & Clarke, 2022). Critical engagement required me to pause, reflect, ask myself questions about the data and document my responses (Braun & Clarke, 2022). For example, I asked myself âwhat assumptions has the volunteer navigator made in describing their world?â, âwhy am I reacting to the data in this way?â, âhow does this person make sense of their caregiving experience?â (Braun & Clarke, 2022). This helped me to unpack the deeper meaning of responses and my initial interpretations of the data. The familiarization process began after midpoint data were collected and continued until after endpoint data were collected. On an ongoing basis, I read interview transcripts in full, took notes on my initial thoughts and interesting quotes, and began to make connections between the data. After completing my initial review of interview transcripts, I completed a second review. This was important as time passed, 97 and I was able to approach the data with a fresh perspective. This process provided me with an initial understanding of my data that gave me the confidence to begin the coding process. Coding is the process of âreading each data item closely, and tagging all segments of the text where you notice any meaning that is potentially relevant to your research question with an appropriate code labelâ (Braun & Clarke, 2022, p. 53). Codes are the smallest unit of analysis and inform theme development (Braun & Clarke, 2022). They are used to capture meaning and generate ideas regarding what is of analytical interest in the data (Bruan & Clarke, 2022). Each code is intended to capture a singular idea and distinguish the diversity of meanings within the data (Braun & Clarke, 2022). The coding process began directly after I had familiarized myself with the data and was completed using NViVO software. In consultation with my committee, I developed initial codes and refined them as my analysis and understanding of the data evolved (Braun & Clarke, 2022). Coding labels were developed with an effort to ensure each code only represented one key meaning (Braun & Clarke, 2022). Separate codebooks were developed for volunteer navigator and caregiver interviews as interviews with each group generated unique data. Throughout the coding process, labels were changed as different data influenced my perspective on meanings, and my previous perceptions no longer felt representative of the data. When this revision took place, all data within the code was reviewed to ensure it fit within the code and was removed or re-coded if necessary. My coding adaptability was important as it allowed deeper refinements of participantsâ experiences to evolve, resulting in richer insights (Bruan & Clarke, 2022). Throughout the process, I coded both explicit and implicit meanings within the data, which allowed me to capture my analytical perspective (Braun & Clarke, 2022). After I had coded five volunteer navigator interviews and five caregiver interviews, my supervisor and doctoral committee reviewed the code books and coded interview transcripts. 98 Upon their approval, I continued with the coding process. Once all data were coded, code labels were collated to ensure all data were accurately captured (Braun & Clarke, 2022). During this process, some codes were combined and re-labelled as some were either too broad or too narrow (Braun & Clarke, 2022). Following this, I conducted a final review of all data within each code and wrote content summaries to ensure they were consistent and thorough. During this final review, relationships between codes were noted in a hand-drawn diagram that included thought bubbles, arrows and margin notes to help develop my understanding of the connections between data. Coding took place over several months, which challenged me to be âokâ with not completing a task quickly and having clean findings immediately. This process challenged my initial perception that the data set was cohesive and perhaps surface-level and gave me the confidence to engage in the next phase. The phases of generating themes, developing and reviewing themes, refining and naming themes, and writing up took place in a non-linear process in which data were continuously reviewed, and changes to themes were made. I began generating candidate themes, which are initial themes that provide a starting point for further development and refinement of ideas, by reviewing the data within each code and creating a hand-drawn thematic map to connect related codes. I developed tentative theme names and organized the codes that fell within each theme. During this process, I wrote notes to help me understand how these themes related to one another and the overarching story of my analysis (Braun & Clarke, 2022). Following this, I reviewed candidate themes by examining the data within each theme to ensure themes were cohesive and represented the central meaning attributed to them by the tentative theme name. I then wrote theme definitions by re-engaging with the data within each theme, re-organizing data, and re-labelling themes when necessary. This allowed me to identify the central organizing concept of 99 each theme, and ensure themes were distinct from one another (Braun & Clarke, 2022). Further, developing theme definitions allowed me to refine my analytic insights and understand the meaning of the data. I presented my preliminary analysis to BP and GP. This allowed me to talk through my ideas, identify gaps, and make changes to further refine my analysis. Next, I began to write the findings section of my dissertation, which contributed to further re-refining, developing and naming themes. I wrote descriptions of themes and selected key quotes that described the meaning of themes. During this process, my ideas of the key meaning of the themes shifted. As such, some themes were re-organized and re-labelled. This was an essential step in the analytical process as it solidified the meaning of themes, which informed the recommendations for program adaptations and future implementation strategies. During this process, I kept thinking about the feasibility and acceptability questions central to my research question. I tried to identify and engage with patterns of meaning that would deepen my understanding of these factors rather than try to answer the concrete question of âis Nav-CARE feasible and acceptable?â. This approach ensured I conducted a thorough analysis in which I was able to answer the research question by relying on the evidence the themes provided, rather than requiring the themes to speak for themselves (Braun & Clarke, 2022). 3.5.3 Findings These data provide insight into the feasibility of adapting the Nav-CARE program to support caregivers of persons living with dementia concerning four key domains: (1) assessment procedures, (2) implementation resources, (3) intervention delivery, adherence, and safety, and (4) acceptability (Aschbrenner et al., 2022). This essential information will be used to guide the implementation of the adapted Nav-CARE program at existing sites and future research 100 examining the effectiveness of the intervention. This section presents the volunteer navigator and caregiver participant characteristics, as well as key findings from the volunteer navigator experience and self-perceived confidence questionnaire, volunteer navigator visit reports, and semi-structured interviews. 3.5.3.1 Volunteer Navigator Characteristics. The study began with 20 volunteer navigators. However, three volunteer navigators withdrew from the study prior to midpoint data collection due to personal reasons or becoming lost to follow-up. The three caregivers supported by these volunteer navigators were then matched with other volunteer navigators who could support additional caregivers. At midpoint data collection, one caregiver had not yet engaged in a visit with a volunteer navigator. The caregiver was then matched with a different volunteer navigator and received support. However, their data were excluded from the analysis as we could not collect midpoint data (see Figure 1). Most volunteer navigators were female, and/or over the age of 65, and/or retired. Volunteer navigators had a range of previous volunteer experience with sports groups, hospices, animal shelters and churches, among other organizations. Participants had various motivations for participating in the research, including personal connections to dementia, appreciation of the importance of research, and recognition of community needs. 101 Figure 1: Pilot Feasibility Study Participant Flow Chart Recruited Caregivers: 20 Volunteer Navigators: 20 Withdrew Prior to Midpoint Data Collection Caregivers: 1 Volunteer Navigators: 3 Data Excluded from Analysis Caregivers: 1 Final Participants Caregivers: 18 Volunteer Navigators: 17 102 Table 9: Pilot Feasibility Study Volunteer Navigator Characteristics Total N = 17 % of Respondents Age 35-44 2 11.8% 45-54 2 11.8% 55-64 1 5.9% 65+ 12 70.6% Gender Female 14 82.4% Male 3 17.7% Work Status Retired/volunteering part-time 3 17.7% Retired 7 41.2% Volunteering part-time/other 1 5.9% Employed part-time/volunteering part-time 3 17.7% Unemployed 1 5.9% Employed full-time 2 11.8% 3.5.3.2 Caregiver Characteristics. To prevent increasing caregiversâ workloads, caregivers were not asked to complete a characteristic questionnaire. Instead, I collected caregiversâ characteristic data over the phone during the consent process and through semi-structured interviews at midpoint and endpoint. Of the 18 caregiver participants, 17 were female and one was male. Caregivers had varying relationships to persons living with dementia as 10 caregivers were spouses, six caregivers were children, one caregiver was a friend, and one caregiver was a sibling. Two caregivers supported their spouses, who had early-onset dementia and were relatively young. In two instances, caregivers were supporting both of their parents, each of whom had been diagnosed with 103 dementia. Many of the caregivers had been in their role for several years. However, some were earlier in the caregiving journey than others. Nine caregivers supported persons living with dementia who were living in the same home as the caregiver or independently from the caregiver, either alone, with a spouse, or with a family member. Nine caregivers supported persons living in facilities such as assisted living or long-term care. During the research, some of the persons living with dementia in the community moved to a facility as their needs increased. Further, two persons living with dementia passed away. The data from one caregiver was excluded from further analysis as they had only engaged in one visit with the volunteer navigator prior to midpoint data collection. 3.5.3.3 Volunteer Navigator Experiences and Self-Perceived Confidence Questionnaire. Findings from the volunteer navigator experiences and self-perceived confidence questionnaire provided insights into the key feasibility domains of (1) assessment procedures (2) implementation resources, (3) intervention delivery, adherence and safety, and (4) acceptability (Aschbrenner et al., 2022) (see Table 7: Feasibility Domains and Data Collection Tools). This questionnaire achieved a 100% response rate (N=17) with only one missing data point (see Table 10: Pilot Feasibility Study Volunteer Navigator Experience and Self-Perceived Confidence Questionnaire Responses), demonstrating its acceptability and effectiveness in obtaining completeness of the data (Aschbrenner et al., 2022). Generally, volunteer navigators agreed that they were able to engage in the activities required for the role and felt their efforts were impactful. Most volunteer navigators (N=16, 94.1%) agreed that their efforts contributed to caregiversâ well-being. Some volunteer navigators (N=6, 35.3%) felt their role impacted the well-104 being of the person living with dementia. Respondents generally agreed they could meet with caregivers when needed (N=15, 88.2%). However, some (N=5, 29.4%) noted they could not meet with the caregiver as frequently as planned. Most respondents (N=13, 78.5%) indicated they could complete the navigation activities they wanted to. Most volunteer navigators (N=15, 88.2%) agreed they had the necessary time to accomplish their desired activities. Generally, volunteer navigators reported high satisfaction, as the majority (N= 16, 94.1%) indicated that their role enhanced their satisfaction as volunteers. Many volunteer navigators (N=14, 82.4%) agreed they felt capable in their role and would recommend being a volunteer navigator to someone else (N= 16, 94.1%). Responses to several questions highlighted volunteer navigatorsâ confidence in their role. Most respondents (N=15, 88.2%) felt confident that they could perform navigation services without difficulty. Most volunteer navigators (N=16, 94.1%) rated their ability to understand keywords and definitions relevant to dementia caregiving as good, very good, or excellent. Most volunteer navigators (N=15, 88.2%) also rated their ability to assist caregivers in identifying quality-of-life concerns for themselves and those living with dementia as good, very good, or excellent. Most volunteer navigators (N=14, 82.6%) felt they had a good, very good, or excellent ability to identify creative ways to support caregivers in addressing their quality of life. Communicating effectively with caregivers and providing strategies and support to engage in challenging conversations about dementia is an important skill for volunteer navigators to have. Most volunteer navigators (N=16, 94.1%) rated their ability to do so as good, very good, or excellent. Volunteer navigators were also confident in their ability to identify gaps in available resources and navigate alternative options (N=15, 88.2%). Volunteer navigators were least 105 confident in their ability to identify community and online support services available to caregivers and persons living with dementia and assist caregivers in accessing them, as 23.5% (N=4) rated their ability to do as poor or fair. Two questions were included to assess self-perceived confidence in communicating with the persons living with dementia. Most volunteer navigators (N=11, 68.8%) indicated they had not visited the caregiver when the person living with dementia was present. Generally, interactions between volunteer navigators and persons living with dementia were infrequent during the navigator-caregiver visits. However, some of the volunteer navigators who had visited the caregiver when the person living with dementia was present (N=5, 31.3%) indicated they were able to communicate effectively with the person living with dementia. All volunteer navigators who visited with the person living with dementia (N=17, 100%) indicated they were able to communicate effectively with the care-dyad. Table 10: Pilot Feasibility Study Volunteer Navigator Experience and Self-Perceived Confidence Questionnaire Responses Questions Strongly Disagree (1) Disagree (2) Neutral (3) Agree (4) Strongly Agree (5) Missing Data (6) Mean (7) Section 1 1. I was able to perform navigation services without difficulty N = 0 0% N = 0 0% N = 2 11.8% N = 8 47.1% N = 7 41.2% 0 4.29 2. I was sure of what I was expected to do as a volunteer navigator N = 0 0% N = 1 5.9% N = 6 35.3% N = 6 35.3% N = 4 23.5% 0 3.76 3. I found I was able to meet with the caregiver when I needed to N = 0 0% N = 0 0% N = 2 11.8% N = 12 70.6% N = 3 17.6% 0 4.06 106 Questions Strongly Disagree (1) Disagree (2) Neutral (3) Agree (4) Strongly Agree (5) Missing Data (6) Mean (7) 4. I found I was able to meet with the caregiver as frequently as planned N = 0 0% N = 5 29.4% N = 3 17.7% N = 5 29.4% N = 4 23.5% 0 3.47 5. I have been able to complete the navigation activities I wanted to N = 0 0% N = 0 0% N = 4 23.5% N = 9 52.9% N = 4 23.5% 0 4 6. I have had time to carry out the activities I wanted to N = 0 0% N = 1 5.9% N = 1 5.9% N = 12 70.6% N = 3 17.7% 0 4 7. Working as a volunteer navigator has contributed to my satisfaction as a volunteer N = 0 0% N = 0 0% N = 1 5.9% N = 8 47.1% N = 8 47.1% 0 4.41 8. Working as a volunteer navigator has contributed positively to my personal wellbeing N = 0 0% N = 0 0% N = 0 0% N = 10 58.8% N = 7 41.2% 0 4.41 9. My efforts as a volunteer navigator have contributed to the caregiversâ personal wellbeing N = 0 0% N = 0 0% N = 1 5.9% N = 14 82.3% N = 2 11.8% 0 4.06 10. My efforts as a volunteer navigator have contributed to the wellbeing of the person living with dementia being cared for by the caregiver N = 0 0% N = 2 11.8% N = 9 52.9% N = 5 29.4% N = 1 5.9% 0 3.29 12. I feel capable in my role as a volunteer navigator N = 0 0% N = 1 5.9% N = 2 11.8% N = 11 64.7% N = 3 17.7% 0 3.94 13. I would recommend being a volunteer navigator to someone else N = 0 0% N = 0 0% N = 1 5.9% N = 7 41.2% N = 9 52.9% 0 4.47 107 Section 2 A â Confidence as a Volunteer Navigator Poor (1) Fair (2) Good (3) Very Good(4) Excellent (5) Missing Data Mean 1. How do you rate your ability to understand key words and definitions relevant to dementia caregiving? 0 0% 1 5.9% 12 70.6% 3 17.7% 1 5.9% 0 3.24 2. How do you rate your ability to assist caregivers in identifying quality of life concerns for themselves and the person living with dementia? 0 0% 2 11.8% 10 58.8% 4 23.5% 1 5.9% 0 3.24 3. How do you rate your ability to identify creative ways to provide support to caregivers to address their own quality of life? 0 0% 3 17.7% 10 58.8% 3 17.7% 1 5.9% 0 3.12 4. How do you rate your ability to identify community and online support services available to caregivers and persons living with dementia and assist caregivers in accessing them? 1 5.9% 3 17.7% 8 47.1% 4 23.5% 1 5.9% 0 3.06 5. How do you rate your ability to identify gaps in available resources and navigate alternative options? 1 5.9% 1 5.9% 10 58.8% 4 23.5% 1 5.9% 0 3.18 6. How do you rate your ability to communicate effectively with caregivers? 0 0% 1 5.9% 5 29.4% 8 47.1% 3 17.7% 0 3.76 7. How do you rate your ability to provide 0 0% 1 5.9% 11 64.7% 4 23.5% 1 5.9% 0 3.29 108 strategies and support for engaging in challenging conversations about dementia? Section 2 B â Confidence as a Volunteer Navigator in Communicating with the Person Living with Dementia Poor(1) Fair(2) Good(3) Very Good(4) Excellent(5) I have not engaged in visits when the person living with dementia is present (6) Missing Data Mean 8. How do you rate your ability to communicate effectively with the person living with dementia? (if you have engaged in visits with the caregiver when the person living with dementia is present) 0 0% 1 6.3% 2 12.5% 2 12.5% 0 0% 11 68.8% 0 3.2 9. How do you rate your ability to communicate effectively with the care-dyad? (if you have engaged in visits with the caregiver and person living with dementia is present) 0 0% 1 6.3% 2 12.5% 1 6.3% 0 0% 12 75% 1 3 109 3.5.3.4 Volunteer Navigator Visit Reports. Findings from the volunteer navigator visit reports provided insights into the key feasibility domains of (1) assessment procedures, (2) implementation resources, (2) intervention delivery, adherence and safety, and (3) acceptability (Aschbrenner et al., 2022) (see Table 7: Feasibility Domains and Data Collection Tools). 94 visit reports were completed and returned to the study team. There was variation in how the volunteer navigator visit reports were completed. The field note template contained questions that required checkboxes and short answer responses. Some volunteer navigators answered all questions thoroughly, while others provided incomplete and/or less detailed responses or did not submit any visit reports. 15 volunteer navigators submitted at least one visit report form, with the highest number of submissions from a single volunteer navigator totaling 13. The total number of visit reports each volunteer navigator could have submitted varied depending on the number of visits they participated in throughout the study. However, each volunteer navigator was expected to engage in 13 visits, accounting for one visit every two weeks over six months. I could not determine the total number of completed visits with this incomplete data. The low response rate and incomplete data suggest that the visit report data collection tool may be unacceptable to participants, offering valuable insight into the effectiveness of this assessment procedure. Data that were provided indicated that most visits (N=71, 76.8%) occurred in person, and some (N=17, 23.2%) took place over the phone. Many visits took place over the phone due to poor weather and/or scheduling conflicts. Of the documented visits, 48 were with only the caregiver, and 10 were with the caregiver and the person living with dementia. One visit took place with healthcare providers present as the visit was conducted with the caregiver, person living with dementia, a registered nurse and a physician. During this visit, the volunteer navigator supported the caregiver by attending an 110 important medical appointment to discuss planning for the person living with dementia. Two visits took place with the caregiver, person living with dementia, volunteer navigator and the volunteer navigatorâs spouse. The caregiver and volunteer navigator arranged this to provide companionship to the person living with dementia while they visited. 3.5.3.4.1. Qualitative Responses from Volunteer Navigator Visit Reports. Qualitative responses provided insights into key components that made visits successful, challenges and barriers to providing support as intended, how and what volunteer navigators learned through this experience, services they provided to support caregivers, challenges raised by caregivers, caregiversâ remaining unmet needs, and volunteer navigatorsâ plans to follow up with caregivers. 3.5.3.4.1.1 Successful Visits Volunteer navigators noted a variety of aspects that made visits successful (see Table 9). Caregiversâ openness to communicate was most frequently noted as a key factor to successful visits (N=37, 30.1%). Her willingness to talk about her experience went really well. We talked about the kind of man he was before dementia and how things transpired from early signs until now. We got to know each other. [Caregiver name] was very open about all her journey so far with her husband who had a heart attack and has been diagnosed with dementia. 111 Engaging in positive meetings with healthcare providers was the least frequently noted positive aspect of visits (N= 1, .8%) as this type of visit was the most uncommon. 3.5.3.4.1.2 Challenges and Barriers When asked what challenges volunteer navigators encountered during the visits, they stated most frequently that there were no challenges (N=24, 19.5%). When challenges were experienced, caregivers' distress was most common (N=14, 11.4%). I could see fatigue in her. She expressed decrease of wellness. She feels she can no longer leave [pwd name] alone in the house. She has the shakes, is tired more often than not. [Caregiver name] shared with me that she gets VERY anxious when [pwd name] has trouble doing ânormalâ or âusualâ things! The least frequently noted challenges were the need for earlier support for the care-dyad (N=1, .8%), and repetitive conversations between volunteer navigators and caregivers (N=1, .8%). Most frequently (N=38, 30.8%), volunteer navigators did not experience barriers to fulfilling the navigator role. When barriers were experienced, the most common were volunteer navigatorsâ self-perceived lack of navigation knowledge (N=6, 4.9%), and time commitment issues (N=6, 4.9%). 112 My own lack of knowledge about the resources available for caregivers. However, [caregiver name] seems very aware of these resources, having been a caregiver for 6 years already. Time â it seems like [caregiver name] needs extra help. Barriers that were noted least frequently included poor weather (N=1, .8%), caregiversâ lack of needs (N=1, .8%), and a lack of services for persons living with dementia (N=1, .8%). 3.5.3.4.1.3 Volunteer Navigator Learning Volunteer navigators most frequently noted that they did not learn anything new about navigation during the visits (N=14, 11.4%). When volunteer navigators did experience new learning, they most frequently noted that they learned about the importance of listening (N=12, 9.8%). The importance of the caregiver just having someone to talk to. This seems to be his primary need at this time and fortunately, I am a fairly good listener and enjoy his company and stories. [Caregiver name] is needing someone to listen to her feelings and making sure she is doing everything right 113 Although less frequent, volunteer navigators developed knowledge during the visits about a range of unique topics including the importance of following up with caregivers regarding various tasks, the importance of continuity in conversations, the challenge of honouring the personhood of the person living with dementia, how to support navigating healthcare decisions, the importance of managing caregiversâ expectations, issues with existing services, the importance of spending time, the extent of knowledge caregivers have, that the volunteer navigators do not have much to offer caregivers, and that it is a challenge to watch the caregiver struggle (N=1, .8%). 3.5.3.4.1.4 Services Provided by Volunteer Navigators The most common service that volunteer navigators provided during visits was listening (N=38, 30.9%). Nothing except listening and learning about his situation. Listening. She talked continuously for 2.5 hours. Less frequently, volunteer navigators also provided a range of services including role play to prepare for anticipated scenarios, sharing a treat, accompanying a caregiver to visit the person living with dementia, and reviewing caregiving related documents (N=1, .8%). 114 3.5.3.4.1.5 Challenges Raised by Caregivers Volunteer navigators reported that the issues discussed most frequently during visits were caregiversâ emotional distress (N=25, 20.3%) and the increasing needs of the person living with dementia (N=19, 15.4%). She seems to be feeling trapped. Her spouse wants to know where she is at all times, even if she is out of the room. Fatigue, anxiety, stress, concerns, worries. He is getting less capable. He used to be able to run his own shower, he now turns on only hot or cold water. He fell under cold water recently and had a HOT shower recently. She is going to set up the temperature for him from now on and possibly get home care in to supervise his showers. He has instability on his feet especially when he gets into a standing position. He has a need for more supervision when dressing and personal care. Issues reported the least frequently included caregiversâ challenges using technology, lack of socialization, physical health issues, and need for future safety supports for the needs of the person living with dementia (N=1, .8%). 115 Listening (N=25, 20.3%) was the most common activity used to address the range of issues voiced by the caregivers. Listening to reports of change, acceptance and gratitude for her new home and other new challenges (meals and meeting new faces soon to become friends). Volunteer navigators also used different strategies to address the issues voiced by caregivers, which included focusing on the positive (N=7, 5.7%), conducting research to identify relevant services (N=7, 5.7%), contacting services (N=7, 5.7%), talking issues through (N=7, 5.7%), encouraging caregivers to follow up with services (N=6, 4.9%), and encouraging caregivers to set boundaries in various aspects of their lives (N=2.4, 3.3%). I suggested she try listening to music that her and her husband enjoy The carer asked me to email the doctorsâ nurse to set the scenario and explain how she is getting him to attend the appointment (explaining he is also part of research). She asked if I can support her at this appointment â I sure can! We followed the concern to why she worried her mother would leave until we arrived at the placement worry. Guilt â we followed the thought of her sharing that her mother had lucid moments before moving â that she had told her on more than one occasion âthat yes, it is a good idea for me to go thereâ. 116 I suggested she speak to his doctor. Then she will know what assessment has been made for her father and what she can do as his caregiver Reassured her that it is okay not to visit if she isnât up to it. If she misses a few days, she feels guilty. 3.5.3.4.1.6 Caregiversâ Remaining Unmet Needs Some volunteer navigators (N=25, 20.3%) noted that all caregiversâ needs could be met through existing services. When caregiversâ unmet needs were discussed, the most common were caregiversâ physical and emotional health (N=14, 11.4%). Support for caregiversâ grief about someone who has dementia. What are the behaviors? What are the care guidelines? Need to know how those affected by dementia deal with their own grief (she lost her husband and home in 3 months). Unmet needs that were noted the least frequently were financial (N=1, .8%), support groups (N=1, .8%) and support to address vandalism (N=1, .8%). 3.5.3.4.1.7 Volunteer Navigatorsâ Follow-Up Plan In most visit reports (N=75, 60.9%), volunteer navigators indicated some form of follow-up plan. In some cases (N=5, 4.1%), the specific topics volunteer navigators wanted to follow up 117 on were noted. Follow-up plans included contacting services on the caregiversâ behalf, encouraging positives, organizing information, and scheduling around the person living with dementia to have 1:1 caregiver and volunteer navigator visits, or to ensure the volunteer navigator could meet the person living with dementia. We will meet again [date], although I did let her know that she could call me over the Christmas holiday to talk if she felt like she wanted to talk. In my next session with the carer I will discuss some tips on how this conversations [with family] may take place. As well, I will follow up on the idea of a pastoral care visitor. Table 11: Volunteer Navigator Visit Reports Responses Question 1 Responses Was there anything that went particularly well with this visit? Frequency Percent Caregiver openness to communicate 37 30.1 Positive conversations 11 8.9 Developing trust and connection 7 5.7 Comfortability 7 5.7 Identifying and organizing care for the person living with dementia 6 4.9 Improving from previous challenges 4 3.3 Positive impact and engagement with the person living with dementia 4 3.3 Good rapport 4 3.3 Increasing visit length 4 3.3 Research conversations 3 2.4 Navigating family dynamics 2 1.6 Caregiver openness to receiving support 2 1.6 Positive healthcare provider meetings 1 .8 Missing 1 .8 Total 93 100 118 Question 2 Responses What challenges did you encounter, if any? Frequency Percent No challenges 24 19.5 Caregiver distress 14 11.4 Volunteer navigator unsure how to support 9 .8 Caregiver needs 6 4.9 Distractions during visit 6 2.4 Changes in the health of the person living with dementia 6 7.3 Caregiver lack of knowledge and understanding 4 3.3 Family dynamics 4 19.5 Arranging support services 3 4.9 Presence of the person living with dementia 2 1.6 Weather 2 1.6 Person with dementia passing away 2 1.6 Repetition 1 .8 Earlier support needed 1 1.6 Missing 5 4.1 Total 89 100 Question 3 Responses Were there any barriers to fulfilling the navigator role? Frequency Percent No barriers 38 30.9 Time commitment 6 4.9 Volunteer navigator lack of navigation knowledge 6 4.9 Caregiver emotional, mental and physical health 5 4.1 Volunteer navigator setting boundaries 2 1.6 Virtual visits 2 1.6 Volunteer navigator person expectations 2 1.6 Language 2 1.6 Volunteer navigator scope 2 1.6 Family dynamics 2 1.6 Weather 1 .8 Caregiver lack of needs 1 .8 Lack of services for persons living with dementia and caregivers 1 .8 Missing 8 6.5 Total 78 100 119 Question 4 Responses Were there needs you identified for which there were no resources to meet those needs? Frequency Percent None 25 20.3 Caregiver physical and emotional health 14 11.4 Support for the person living with dementia 9 7.3 Caregiver lack of knowledge of dementia 6 4.9 Support for family dynamics 5 4.1 Respite 4 3.3 Transport for caregiver to visit the person living with dementia 4 3.3 Management of the behaviors of persons living with dementia 3 2.4 Language 3 2.4 Training for staff providers 2 1.6 Distance to programs 2 1.6 Support groups 1 .8 Financial 1 .8 Vandalism 1 .8 Missing 8 6.5 Total 88 100 Question 5 Responses Did you learn anything new about navigation through this visit? Frequency Percent No new learning 14 11.4 Value of listening 12 9.8 Caregiver led 7 5.7 Caregiving complexities 7 5.7 Importance of volunteer navigator approach 6 4.9 Challenges of family dynamics 5 4.1 Range of needed supports 4 3.3 Need to meet the person living with dementiaâs needs 3 2.4 How to share resources with caregivers 3 2.4 How to access reputable sources 2 1.6 Beneficial to caregivers 2 1.6 Boundaries 2 1.6 Importance of volunteer navigator role 2 1.6 Caregiver support needs 2 1.6 Importance of following up 1 .8 Importance of consistent conversations 1 .8 120 Challenges honouring personhood 1 .8 Not much to offer 1 .8 Navigating healthcare decisions 1 .8 Watching caregivers struggle 1 .8 Managing caregiver expectations 1 .8 Issues with existing services 1 .8 Importance of time 1 .8 Caregiversâ knowledge 1 .8 Missing 8 6.5 Total 89 100 Question 6 Responses What navigation services did you provide during the visit? Frequency Percent Listening 38 30.9 Suggesting and encouraging accessing supports for caregivers and persons living with dementia 18 14.6 Emotional support 13 10.6 Facilitating setting up supports for caregivers and persons living with dementia 12 9.8 Validation 6 4.9 Encouraging positive conversations 6 4.9 Discussing self-care 6 4.9 Providing information 3 2.4 Nothing 2 1.6 Open ended questions 2 1.6 Explaining research project 2 1.6 Family dynamics 2 1.6 Encouraging caregiver 2 1.6 Following up 2 1.6 Sharing treat 1 .8 Accompanying the caregiver to visit the person living with dementia 1 .8 Reviewing documents 1 .8 Missing 1 .8 Total 123 100 121 Question 7 Responses Were there any issues reported to you by the caregiver? Frequency Percent Caregiver emotional distress 25 20.3 Increasing needs of the person living with dementia 19 15.4 Facility concerns 13 10.6 Family dynamics 11 8.9 None 10 8.1 Dissatisfaction with services 10 8.1 Lack of respite 4 3.3 Distress of person living with dementia 4 3.3 Caregiver lack of physical activity 2 1.6 Caregiversâ challenges using technology 1 .8 Safety supports for future care 1 .8 Caregiver lack of socialization 1 .8 Caregiver physical health issues 1 .8 Missing 3 2.4 Total 105 100 Question 8 Responses If so, what kind of activities did you complete to address these issues? Frequency Percent Listening 25 20.3 Focus on the positive 7 5.7 Research to identify services 7 5.7 Contacted services 7 5.7 Talking it through 7 5.7 Encouraging caregiver to follow up with services 6 4.9 Reassuring 4 3.3 Encouraging caregiver to access services 4 3.3 Encourage caregivers to set boundaries 4 3.3 Offering support to attend appointments 3 2.4 Volunteer navigator feeling stuck 3 2.4 Volunteer navigator encouraging caregiver to have social connections 2 1.6 Encourage caregiver to communicate with facility staff 1 .8 Planning family conversations 1 .8 Volunteer navigator creating toolkit 1 .8 Missing 19 15.4 Total 101 100 122 Question 9 Responses Were any follow-up plans made? Frequency Percent Follow up visit planned 63 51.2 Volunteer navigator planning to follow up on specific topics 5 4.1 Encouraging positives 2 1.6 Contacting services 2 1.6 Working around the person living with dementia 1 .8 Volunteer navigator organizing information 1 .8 Plans to meet person living with dementia 1 .8 Missing 6 4.9 Total 81 100 3.5.3.5 Volunteer Navigator and Caregiver Semi-Structured Interview Findings Findings from the volunteer navigator and caregiver semi-structured interviews provided insights into the key feasibility domains of (1) assessment procedures (2) implementation resources, (3) intervention delivery, adherence and safety, and (4) acceptability (Aschbrenner et al., 2022) (see Table 7: Feasibility Domains and Data Collection Tools). All 17 volunteer navigators completed the midpoint interview. One caregiver did not complete the midpoint interview due to their own cognition challenges. As such, 17 caregivers completed midpoint interviews. This response rate suggests that the assessment procedures were acceptable to participants and that the tool was effective. Following midpoint data collection, key informants were identified, which resulted in seven volunteer navigators and nine caregivers completing endpoint interviews. Data saturation was reached; therefore, no additional interviews were conducted. Eight themes were developed from the volunteer navigator and caregiver interview data: 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) caregiversâ challenges and successes in identifying 123 and addressing their own needs, 5) complexities of volunteer dementia navigation, 6) relationships are meaningful, 7) longitudinal, individualized and adaptive support is essential, and 8) listening is a double-edged sword. Collectively, these themes provided insight into the four key feasibility domains by outlining nuances of volunteer navigatorsâ experiences within their roles, their impact on caregivers and persons living with dementia, the key contextual factors that volunteer navigators need to consider when providing support, the type of support volunteer navigators provided, the impact of this support, and changes that could be made to improve the Nav-CARE program and provide improved support to caregivers. Volunteer navigator and caregiver data were coded using separate codebooks. There was extensive overlap in the perspectives of volunteer navigators and caregivers. As such, themes were developed by examining the data and codes in their entirety rather than separately. The eight themes and corresponding codes are provided in Table 10: Final Themes, Feasibility Domains and Codes. This section includes theme descriptions accompanied by illustrative data extracts. Table 12: Final Themes, Feasibility Domains and Codes Themes 1. Feasibility Domains 2. Codes 1.Volunteer navigators provide emotional and relational support 3. 1. Intervention delivery, adherence and safety 4. 2. Acceptability 5. Listening (VN); Volunteer emotionally support caregivers (VN); Grief support (VN); Family dynamics (VN); Individualized and adaptive support (VN); Reflecting (CG) 6. Quality of life improvements (CG); Relationship building (CG); Emotional supports (CG) Grief (CG) 2.Volunteer navigators provide healthcare and legal system navigation 7. 1. Intervention delivery, adherence and safety 2. Acceptability Navigational support for healthcare systems (VN); Suggesting community resources (VN); Navigational support (CG) 124 Themes 8. Feasibility Domains Codes 3.A deep understanding of dementia and caregiving is required to support the dyad 9. 1. Intervention delivery, adherence and safety 10. 2. Acceptability 11. Volunteer training (VN); Knowledge of healthcare (VN); Knowledge of dementia and caregiving (VN); Knowledge of community resources (VN); Training and volunteer navigator role (CG); Knowledge of dementia (CG); Support navigating family dynamics (CG) 4.Caregiversâ challenges and successes in identifying and addressing their own needs 12. 1. Intervention delivery, adherence and safety 2. Acceptability Interconnected needs (VN); Focus on the person living with dementia (VN); Interconnectedness of caregivers and persons living with dementia (CG); Inspiration for research involvement (CG); Support for persons living with dementia (CG); Gaps in existing supports (CG); Continuing visits (CG); Respite (CG); Lack of support for caregivers (CG); Self-care (CG); Stable aspects of caregiving (CG) 5.Complexities of volunteer dementia navigation 13. 1. Intervention delivery, adherence and safety 14. 2. Acceptability 15. 3. Implementation resources 16. 4. Assessment procedures Importance of coordinator role (VN); Boundaries (VN) Support for volunteer navigators (VN); Nav-CARE logistics (VN); Caregiversâ needs for social connection (VN); Issues with support groups (VN); Unmet support needs (VN); Negative aspects of the program (CG); Logistic challenges (CG) 125 Themes 17. Feasibility Domains Codes 6.Relationships are meaningful 18. 1. Intervention delivery, adherence and safety 2. Acceptability Meaningful relationships (VN); Learning from caregiver (VN); Positive aspects of the volunteer navigator role (VN); Continuing visits (VN); Motivation for volunteering (VN) 7.Longitudinal, individualized and adaptive support is essential to caregivers 19. 1. Intervention delivery, adherence and safety 20. 2. Acceptability 21. Individualized and longitudinal support (CG); Importance of volunteer navigator role (CG) 8.Listening is a double-edged sword 22. 1. Intervention delivery, adherence and safety 23. 2. Acceptability 24. Listening (CG); Not needing the support (CG) *VN: Volunteer navigator code *CG: Caregiver codes 3.5.3.5.1 Semi-Structured Interview Themes. 3.5.3.5.1.1 Volunteer navigators provide emotional and relational support This theme explores the key focuses of emotional and relational support volunteer navigators provided to caregivers, how the support was provided, and the impact it had on caregivers. Emotional and relational support often addressed grief, family dynamics, and frustrations with the healthcare system among other topics. This support was individualized, as caregivers often led conversations by discussing topics that were important to them. Caregivers were supported with various emotions, but implicitly and explicitly highlighted they felt most supported in dealing with anticipatory and ongoing grief. I feel I am grieving the loss of my mom, you know, and not knowing what to do with her. My biggest struggle is the whole âtake me home, take me home, I donât want to be hereâ. And then you explain to her why she canât be there, but I want to be there, you know. So, the volunteer navigator is helping me with coping mechanisms for that internal conflict. - Caregiver 126 As a result of the emotional and relational support that was provided, caregivers were able to reflect in ways they were previously unable to as they felt less alone, were able to tell their whole story of caregiving, sometimes for the first time, and were provided with insights and perspectives that challenged their perceptions of their own circumstances. As a result, caregivers experienced quality of life improvements including feeling important, clear minded, reassured and empowered. I have learned that I was in a fog. I didnât realize I was and I think when I first started meeting with the volunteer navigator, I was in that fog still. Now the fog is lifting and Iâm becoming more clear on things. Just her taking that time to be there and watch me cry. And she came at Christmas and brought me a beautiful card and some of her baking. It became very personal then. And she just made me feel like I was important. And she came with ideas, she took the time to find the literature. She is doing her research as well to find literature to help me. - Caregiver Iâve had supreme guilt about not being there and moving my mom and her wanting to be home. And through the volunteer navigator I have been reassured. She continuously reassured me that I am doing the right thing. Itâs giving me empowerment to not have to ask somebody and second guess myself all the time. â Caregiver Volunteer navigators understood this support as a way to address caregiversâ isolation and loneliness, encourage them, and validate their emotions and decision-making. I said âso what are you expecting to experience in the way of grief, you know, over the coming time?â and she said, âwell, you know, I've had five years of anticipatory grief. I have had to say goodbye to the guy I married, the guy I fell in love withâ... Mostly what I did was 127 encourage her and tell her I thought she was doing a good job with what she was dealing with. -Volunteer Navigator Ultimately, volunteer navigators viewed their role as primarily being to listen and âjust be thereâ as an objective person outside the caregiversâ circles. She articulated this to me, but what she loved was just to have someone who wasnât family. Just someone outside the box that was able to have fresh eyes and no emotional connection. She was affirming that it is nice to have outside support that isnât medical, isnât family, isnât religious. â Volunteer Navigator In many cases, volunteer navigators viewed this support as being the biggest contribution they could make. In some cases, this was perceived as enough support, and in others, it made the volunteer navigator question whether they could be doing more. Further, volunteer navigators noted this support was only as beneficial as the caregiver wanted it to be as they did not always take action. I think just caring, listening attitude. I think that was the biggest contribution to just be willing to meet with her, have a coffee, listen to whatever it is she wants to talk about. I think, to me, that was my biggest contribution...We relaxed, we enjoyed, we laughed, we cried. â Volunteer Navigator You want to write them a prescription and make them better. But actually, youâve somehow got to encourage them to go ahead and make their own prescription. â Volunteer Navigator 128 3.5.3.5.1.2 Volunteer navigators provide healthcare and legal system navigation support This theme explores the types of healthcare and legal system support volunteer navigators provided to caregivers, the motivations for providing this support, caregiversâ perspectives on the most valuable resources, the impacts of this support, and caregiversâ desire for additional support. The type of navigational support provided by volunteer navigators varied and included talking directly to homecare managers, attending physician appointments with caregivers and the person living with dementia, conducting research to understand the healthcare and legal systems relating to dementia, connecting caregivers to resources, and encouraging and following up with caregivers to access resources and contact providers. I was able to talk to the home care manager. And it ended up being a few days before she[the caregiver] talked to him. I think I was able to give the home care manager a clear picture of exactly whatâs happening. She [the caregiver] gets stressed as English is her second language and she becomes hesitant to speak to providers. â Volunteer Navigator She invited me to come be a part of the geriatric assessment. I was her support person because she wasnât sure how her husband was going to react. In case it was bad she was like, âI would just like some supportâ. She previously had a bad appointment. So I asked her how we could make it more comfortable and what her hope was. To prepare, we chose questions to ask about medication as that was her concern. â Volunteer Navigator An issue I gave her a bit of support on was in dealing with the enduring power-of-attorney that she has for this lady and she was running into a couple of problems there, so I 129 suggested that she talk to the lawyer and the Office of the Public Trustee to give her some answers. â Volunteer Navigator Caregivers highlighted that volunteer navigators connected them to existing resources in their community by reminding and/or informing them of the services, encouraging them to access them, and following up to see if they accessed them. Caregiversâ resources included grief coping tools, guiding documents for visits with the person living with dementia, and tools to explain the POA and personal directive processes. She did give me a brochure that was about the Enduring Power of Attorney. I found that booklet she gave me quite helpful. There were some things that I have dealt with being the caregiver that have been big issues. So that was really helpful. - Caregiver The volunteer did follow-up on a few things that I would mention. You know, connecting me to spiritual care. That is important for people and sometimes they get forgotten and left. So, the volunteer was helpful in that way because she did initiate talking to the chaplain of this program. - Caregiver As an extension of health and legal system navigational support, caregivers also noted their desire for additional support with house maintenance and practical tasks. Something I have been wondering how to deal with is that we live in our own home and there is always something breaking down or that needs to be fixed, you know the sidewalks need to be shoveled out. Where and how do you find people other than opening your phone book, closing your eyes and pointing somewhere. How do you find someone reputable? That is one of my biggest challenges that I want help with. - Caregiver 130 Volunteer navigators provided these supports to make the caregiver feel less alone and more supported. They also wanted to help caregivers achieve their specific service-related outcomes such as resolving a legal issue and understanding the system to make informed decisions. We had real true conversations about finances and banks and things like that. I think that's the biggest growth conversation weâve had where she brought a problem, we hashed it out, talked it over, and shared how it could be completed. â Volunteer Navigator She recently asked me, like his condition is part of an injury in the workplace, and so someone at Workers Compensation told her that if he went into care, she would lose all money, her house, all those things. So, I did some research and found a lawyer that deals with Workersâ Compensation issues. â Volunteer Navigator Volunteer navigators felt these supports were important, but that they were provided less frequently than emotional and relational support. Caregivers valued this support greatly because it provided them with a trusted and reliable person to help them identify resources. Having that volunteer being able to help you with resources and stuff, that is priceless. - Caregiver Having the volunteer navigator takes away some of the guessing. You have somebody that has some experience or knows where you can go and what you should be doing. It can take away some of the unknown. - Caregiver 131 3.5.3.5.1.3 A deep understanding of dementia and caregiving is required to support the dyad This theme explores volunteer navigatorsâ and caregiversâ desires for increased knowledge of dementia and caregiving, the specific knowledge volunteer navigators need to have, the motivations for and importance of increased knowledge, and the impacts volunteer navigatorsâ lack of knowledge had on their ability to support caregivers. Volunteer navigators desired more information, in a centralized and streamlined accessible format, relating to dementia (e.g., different forms, disease trajectories, approaches to engaging with/managing symptoms of PWD), community-specific resources (e.g., local formal and informal supports), and the healthcare system (e.g., different levels of care, how to complete paperwork/apply for supports), and caregiver experiences. I think defining between Alzheimerâs and dementia. Even understanding the language of how to support those different types of dementia because I assisted with medical appointments, and I would think... wow I need to talk to a nurse because I need to understand what we are talking about. Medical doctors are so swamped and they do the best they can. So where should caregivers be getting their information from? The internet is a rabbit hole. â Volunteer Navigator Caregivers wanted volunteer navigators to be knowledgeable about strategies to engage persons living with dementia as the disease progresses, best practices for communicating with the person living with dementia, medications, financial supports, community resources, and the unpredictable disease trajectory. Caregivers also discussed the need for volunteer navigators to improve their knowledge of the caregiving experience, family dynamics, grief, and navigating the legal and healthcare systems. 132 For me, what knowledge would have been helpful was a little bit of procedure policy about Provincial Health Services. Like, is it normal to have two staff for 19 people? Who do I talk to about that? How do I hire someone privately for more support? Is that normal? What drugs are used to help with Alzheimerâs? When I got a call yesterday from the home care caseworker saying âthese are the restraints you want to use. Are you okay with that? This is the injectable we want to use, are you okay with that?â And I think.... I don't know. - Caregiver Volunteer navigators emphasized that detailed dementia-specific knowledge is essential to their ability to provide caregivers with reassurance and assist them with problem-solving. Further, they highlighted that to provide this support, their understanding needs to be deep and meaningful. In some cases, volunteer navigators also wanted this knowledge to be able to educate caregivers. I didnât anticipate trying to give the caregiver a lot of information about dementia and when I donât know that much myself about the disease. I didnât expect that I would be needed this much. â Volunteer Navigator The community can be doing a lot of things but unless people know about it, thatâs where the real difficulty is. That is where the biggest power comes from is letting everybody know about it....even if we had something with all the available resources, something that we can pass onto our caregiver. Even a little brochure, a little pamphlet. â Volunteer Navigator Maybe volunteers can push for more knowledge of dementia for themselves and caregivers. Like first, whatever kind of dementia, because thereâs a lot of different kinds and they present themselves differently. And just learning a little bit about the whole physiology of dementia and 133 what it does, how to talk to your family about it, those sorts of things. It would be a big help to caregivers. â Volunteer Navigator Understanding family dynamics is so important. Something I found to be extremely helpful is, well there are serious family dynamics going on here. And when I had meetings with the volunteer navigator, even for me to be able to tell her what was going on... she didnât need to fix anything. But just to have someone to vent to because I donât want to do that to my friends, I can only talk about that so many times. The volunteer navigator was very empathetic and that, to me, was extremely helpful. - Caregiver Often, caregivers wanted volunteer navigators to have this knowledge to empathize, validate, listen, and just âbe thereâ for them. In some cases, caregivers also wanted volunteer navigators to have this knowledge to streamline information and provide helpful tips. I think it would be helpful if volunteer navigators were able to make more tips. Like, for example âokay, youâre going to have home care come in. Well, this is my suggestion to make your home care visit successfulâ. Or just giving that information because you go into this and you have no information. It is a trial by error and sometimes the simplest things make such a difference. - Caregiver Due to their lack of knowledge, it appeared volunteer navigators had confusion regarding the scope of their role as they felt limited in their ability to provide support. For example, they highlighted that this prevented them from providing emotional and navigational support. To improve their knowledge and clarify their role, volunteer navigators wanted longer, and more in-depth and interactive training. 134 If I had more training, I probably wouldâve been able to provide more reassurance about things. I found out about some of the issues because the caregiver brought them up. â Volunteer Navigator From my perspective, I have some experiences with it but there is still a lot to learn from all the challenges they face. Itâs a lot. There are websites dedicated to this stuff, you can read through a few things, but it's still overwhelming. I sometimes donât have any kind of clue what the answer could be or even how the [province] health services work, or how to help, itâs my first time on their website. â Volunteer Navigator Further, volunteer navigatorsâ lack of knowledge resulted in caregiversâ skepticism of volunteer navigatorsâ ability to adequately support them. In other cases, caregivers felt they were educating volunteer navigators rather than receiving support. As such, caregivers highlighted that a deep understanding is foundational to supporting them. However, some caregivers indicated that volunteer navigatorsâ increased knowledge would not improve the support as the main barriers to feeling supported resulted from the healthcare system. It was almost the reverse, right. I was almost helping out instead of the other way around. Which is fine, nothing against anybody or anything. Itâs just that he needed to know more about dementia and caregiving. Heâs a very pleasant person, good at listening and all that, but he wasnât knowledgeable enough. - Caregiver I donât know what would help me. My volunteer has been a good listener, but I am not sure that she could specifically alleviate my worries by more education or knowledge. I mean, she was fine. She listened and I did tell her a lot of things that I thought should be improved. But 135 that's our healthcare system the way it is right now, it's never going to be perfect and I donât know if itâs even going to improve. - Caregiver 3.5.3.5.1.4 Caregiversâ challenges and successes in identifying and addressing their own needs This theme explores the ways in which caregivers demonstrated challenges in identifying and addressing their own needs, and how they were able to practice self-care. Challenges were evident through the way caregivers responded to questions during interviews, and in feedback from volunteer navigators regarding the discussions that took place during visits. Through these visits, volunteer navigators developed an understanding of the need to provide support that addresses both the caregiver and the person living with dementia. Volunteer navigators highlighted the implicit and explicit ways in which caregivers faced challenges in recognizing their own health, social and emotional needs. Volunteer navigators noted that during visits, caregivers often focused discussions on their anxieties and worries regarding the needs of the person living with dementia. A lot of the things we talked about were her concerns relating to the healthcare system, the training of staff who were giving care to the person living with dementia. â Volunteer Navigator Sheâs at the hospital or the care home every day, sometimes twice a day. She feels that if she wasnât there all the time her husband wouldnât get fed or moved. She feels she needs to be there. â Volunteer Navigator Caregivers expressed concerns about their own health coinciding with the declining health of the person living with dementia, being separated if the person living with dementia 136 required more support, and the quality of care for the person with dementia. This was more evident when caregivers were asked directly about their own needs, and instead discussed the importance of the needs of the person living with dementia over their own. When he went downhill last year, I went downhill with him and I needed to see my psychiatrist, I needed a change in medication for depression and anxiety, and itâs the only time since 2005 that has happened. I was so distressed because at that point he was reduced to growling. It was just awful. You live in the moment with him, and in the back of your mind is always the question, is this the new normal? - Caregiver I keep trying to do things that will be an advantage to him. If heâs advantaged, then Iâm happier too. - Caregiver I am ridiculously grateful when I can do something for [the person living with dementia]. Like, when I realized his glasses werenât fitting properly anymore and I managed to get our optometrist's office to send somebody to drive to fix his glasses. I am so grateful to be able to do something. - Caregiver Volunteer navigators noticed that during visits, caregivers experienced challenges in identifying and addressing their own needs, specifically when discussing self-care. In some cases, volunteer navigators were able to encourage caregivers to consider their own needs. In other cases, volunteer navigators found it difficult to engage caregivers in discussions regarding their own needs, and recognized that thinking about their own needs may be new for them. These challenges were also evident in interviews with caregivers as they often reverted to discussing the person living with dementia instead of themselves. 137 In the last meeting, the whole meeting I focused on well-being of the caregiver and what she could do to help maintain her well-being. I could tell from her questions that she had never thought of it in that aspect of caring for herself. â Volunteer Navigator During interviews, when caregivers identified their own needs, they were often mentioned in relation to the needs of the person living with dementia. For example, caregivers often recognized self-care was important because they needed to continue to support the person living with dementia. Further, in interviews and visits, caregivers sometimes voiced their desire for the volunteer navigator to support the person living with dementia directly with tasks such as managing their daily needs and finances as they perceived them as having higher needs. This sentiment was also present when caregivers determined they did not need support from a volunteer navigator as the person living with dementia was stable and/or well supported. The evening that he [volunteer navigator] came and spent with the two of us, my husband really got a lot out of it because it seemed like they had a lot in common. What I expected or what I am looking for is ways to get my husband interacting with other people. I was hopeful after that one meeting that maybe once every couple weeks he met with me once and [the person living with dementia] once. â Volunteer Navigator I wanted to participate in this research because it may improve the life of patients with Alzheimerâs. I will be excited, and I am hopeful that it will make a difference for them. - Caregiver I really got the feeling again that she wanted me to work with her husband, to take him out and do stuff with him and that she really didnât want me for support. She alluded to that three or four 138 times. I think she was really participating in the research to try and get some respite, have someone to work with her husband. â Volunteer Navigator Despite these challenges, there were situations in which caregivers discussed the importance of self-care, their practices for engaging in self-care, and how the volunteer navigator facilitated engagement in self-care. These discussions were often positive and demonstrated the resilience and joy caregivers can have. Caregivers described self-care as important because it prevented burnout and the decline of their own health. They engaged in a range of self-care practices including going to the movies and live theatre plays, riding motorcycles, taking vacations, eating healthy, getting massages, manicures, pedicures and Raki therapy, attending spiritual care meetings and setting boundaries with the person living with dementia by limiting the number of weekly visits. When I got rid of the marriage bed, that was huge. I had all these internal change and shifts going on and so I got a raki treatment for self-care. - Caregiver Iâve started going to the movies alone, which shocks some people. I mean, âsheâs 86 years old and she drove herself to a movie?â. I park right at the door and I intend on going to more. There is no reason I canât go alone. - Caregiver I am pretty excited about it because itâs been awhile that I got out and away for a little bit. Iâm just going to go to a friend but this motorcycle for me, itâs better than therapy. - Caregiver When respite was discussed caregivers were able to recognize the importance of having a break as it would provide them with time to address their own needs. 139 I always keep thinking about my mom, mom needs help, mom needs this, mom needs that. I have been realizing over the years that I need the help as well. - Caregiver Notably, caregivers described that volunteer navigators allowed them to practice self-care by focusing on their own needs during their visits and by encouraging them to take-care of themselves. When I originally talked to the volunteer navigator I was desperate. When she comes and visits with me itâs so beneficial. People forget that the caregiver needs just as much help as the person that needs the care, you know. â Caregiver 3.5.3.5.1.5 Complexities of volunteer dementia navigation This theme explores the complexities of volunteer dementia navigation services by examining perspectives on the ways in which volunteer navigators can improve the support they provide, and the key aspects of programs that facilitate or hinder success. Caregivers often suggested that the volunteer navigator role had an impact on them, but that it could be more beneficial. For example, caregivers identified ways volunteer navigators could provide improved support, which included establishing a strong relationship and connection, having good availability, and be willing to visit in locations that are best for the caregiver (e.g., out at a coffee shop to improve socialization). My experience hasnât been great. Since the program started I have only seen the volunteer three times. It took us awhile to make connections to start with and then I saw him a few times and then shortly before Christmas he came over and spent an hour with my husband and I both 140 and I havenât heard a word from him since. Not a phone call, not a text, nothing. Iâm not sure what my expectations were that I would be in more contact with the persons, but our visits are less than every other week or so. - Caregiver I felt that maybe we should have met at some other place like Tim Hortons or a coffee shop. I did mention going out at one point, but I donât know why, it just didnât happen. I think itâs better to get a change of scenery and go to a different place occasionally. - Caregiver In other cases, caregivers indicated they did not find the volunteer navigator particularly helpful and would have been fine without this support. This was often attributed to volunteer navigatorsâ inability to provide physical support, or the types of support that caregivers most desired in their current stage of caregiving. Further, the stigma associated with palliative care and dementia was discussed as a potential barrier to caregivers accessing support from volunteer navigators. I used to have a support person I paid for. She was great because through the winter she never let me slip on the ice. She was certainly of some help to me then because I needed help physically and mentally. So now, this volunteer navigator that came couldnât really do anything for me. She couldnât lift anything or drive me or do anything. - Caregiver People are so sensitive about the word palliative. They donât necessarily see a person with dementia as palliative. So, I think the challenge that we have in our area is thereâs that mixing of those. How do you separate it? Maybe you canât. But there is confusion. And Nav-CARE and dementia, I think, is a little different than the Nav-CARE volunteer that comes in and reads you a book or plays cards with you for the afternoon. â Caregiver 141 Volunteer navigators highlighted challenges that can be addressed within the Nav-CARE program to improve the support they provide, which included setting clear boundaries with caregivers to set expectations, having support from the Nav-CARE team to assist volunteer navigators with challenges, having collaborative opportunities for volunteer navigators to share ideas, implementing Nav-CARE in supportive and well-connected communities, and ensuring sites have the financial ability to sustain the program. Support for us navigators, for me, itâs always been having the time to talk to other people and hear their suggestions because weâre all very smart. We have great ideas and great suggestions and thatâs what I liked and appreciated was the monthly get-together and just that talking about how people thought and dealt with a certain situation. That to me was hugely important and I would like to see that continue. â Volunteer Navigator Everyone always needs funding. People come up with strategies like barbeques and things like that. But a barbeque will make a thousand bucks. That isnât going to pay for a coordinator. And unfortunately, you just need the coordinator. â Volunteer Navigator Volunteer navigators also noted several healthcare system challenges that need to be addressed in order for programs such as Nav-CARE to have the ability to have impact. For example, volunteer navigators highlighted the extreme isolation and loneliness that many caregivers experienced. Many noted that a volunteer navigator would be unable to completely address this need as it requires more frequent and thorough social and emotional support. Further, they noted that existing programs such as support groups and respite are also inadequate due to their narrow focuses and limited accessibility. 142 We are providing a Band-Aid. I am not sure how long it will stick. The hole in the system is pretty big. It needs sutures. But a Band-Aid is better than nothing. â Volunteer Navigator It was challenging to see the caregiverâs situation and have the desire to fix things that are wrong in the system. â Volunteer Navigator 3.5.3.5.1.6 Relationships are meaningful This theme explores how relationships developed between volunteer navigators and caregivers, and the impacts of these relationships. Volunteer navigators recognized that meaningful relationships with caregivers developed through multiple visits by building trust and creating a safe space where caregivers could discuss their experiences. Volunteer navigators became emotionally invested in these relationships as they witnessed the challenges caregivers endured. I think I kind of hoped that she would just suddenly open up her heart and emotions to me one day. It took a little while for her to get comfortable to trust me and be able to share things. We have come a long, long way with that. â Volunteer Navigator Over time she could spill her guts and knew that I wasnât going to go back to anywhere or look at anybody differently because I wasnât going to see them. I wasnât horrified when I heard the story. I said, âthis is life. This is so many livesâ. â Volunteer Navigator Often, caregivers highlighted that the relationships they developed with volunteer navigators were meaningful as they felt they had a neutral friend to confide in. 143 I guess in some ways weâve become friends and you know, can share about whatâs happening in our lives, as well as my life and hers. So perhaps, itâs been a bit of a neutral support. - Caregiver Volunteer navigators benefited from these relationships as they felt helpful, that they had a new extended family member, that the relationship added meaning to their lives, that they made a new friend they would continue to visit after the research, that they learned from the caregiver about dementia and caregiving and were able to celebrate caregiversâ lives. This experience was about me celebrating somebodyâs life and what theyâre doing. â Volunteer Navigator Getting to know [caregiver] has stood out as something meaningful from this role. I consider him a friend. I have other friends my age but maybe not a whole lot. He adds diversity to my set of friends because most of the others are academics. â Volunteer Navigator Relationships that I think weâve all built through this will prove to be major dividends for people. â Volunteer Navigator When we make our appointments, she says âcome on over. Iâll put the tea onâ. Itâs like going to see an old friend. Itâs kind of like an extended family member now. â Volunteer Navigator Volunteer navigators also recognized the positive impact on caregivers as they confided in volunteer navigators, showed excitement for visits, and over time grew their willingness to share. This perspective was supported by caregivers who often highlighted that these relationships were essential to making them feel supported, how they did not feel like a client, and were also able to talk about different aspects of their lives with the volunteer navigator. 144 I was really surprised at how once she started to trust me how much she was prepared to share. â Volunteer Navigator I think she really appreciates our relationship. She collects Nativities, so before Christmas she took me on a tour of her house of all the Nativities she has. My husband makes woodworking Christmas ornaments every year and this year he made a Nativity. So, he took her one, and she was really thrilled. â Volunteer Navigator Weâre comfortable with each other and that makes it easy to talk, you know. And I think it is helpful too that she shares some of her story as well because then it feels more like a personal relationship rather than a client kind of thing. â Caregiver We can talk about other things in our lives too and because she has gone through this [caregiving] process with meâ¦ that can be part of our conversation. We sort of understand where each other are at. So, I'm sure she'll ask me how my sister-in-law is doing or how I'm doing with her. I know in some situations the navigator has sort of been a support in other areas in people's lives too. â Caregiver 3.5.3.5.1.7 Longitudinal, individualized and adaptive support is essential to caregivers This theme explores the ways in which caregivers emphasized the importance of volunteer navigators providing longitudinal, individualized and adaptive support throughout the caregiving journey. Caregivers noted their desire to connect with a volunteer navigator at the beginning of their caregiving journey as early connection would enhance volunteer navigatorsâ understanding of their unique circumstances, and caregivers would have support to identify places where they 145 can access initial information and resources, which inform future planning. This early connection was viewed as essential to ensure volunteers could be strong advocates. Having a volunteer navigator early on would have been beneficial. Having a meeting immediately after diagnosis. This should be on the tips of the fingers of the doctors. It should be the minute youâre diagnosed. You walk in and youâre given this horrific news and here you go. This is where you need to call, this is who you need to call and they can help you navigate everything through the system. - Caregiver This support is so important. At any stage it is important, but I think even more so at the beginning when youâre feeling so overwhelmed and so lost. But then too as things progress, Itâs still important. But right at the beginning it is especially important, because you can grow from there. This is especially unique with Alzheimerâs, it is a deterioration of the mind and can take many years. - Caregiver When the volunteer navigator came in, I pretty much had everything in place. Like self-managed care and everything was set up. Prior to that, there was a lot of not knowing what to do, where to go, who to talk to and all of that. It took quite a few years. So, having a volunteer navigator early would be a big hit... to sit there and help and say âhey you know what this is? This is probably your next step. This is what you need to go doâ. - Caregiver It would have been really nice to have a volunteer navigator early on to have someone that can walk alongside you and say âWell, I know that if you contact here or there, they could help you with various thingsâ. Now it is more just nice to have someone walk beside me, hear me and have some empathy. - Caregiver 146 Caregivers also highlighted how this support could address the stigma and fear of a diagnosis, which often prevents caregivers from seeking help, and could contribute to increased support to caregivers throughout the grief journey. It is really important to offer caregivers a volunteer navigator. Some people will not accept that because they donât know what it is, but having it offered and leaving it open so they can call. I guess my thought is some families are very private about the fact that a family member may be having some problems with their memory. You know, people donât even want to use the word. They just say memory. It can take quite awhile to acknowledge and live with the fact it is dementia. And so having that opportunity for a volunteer navigator as an open door is important. - Caregiver Iâm sure that the majority of caretakers do not know what to do, because first of all, you donât even know that it is Alzheimerâs right. Until you go to the doctors and find out. When this all started there was a marital problem because she wouldnât connect and there were all kinds of issues, we had no clue. She was laid off and I accidentally found a letter that fell out of her purse, which I was shocked to hear. At work, she wouldnât understand things or communicate, she didnât know her passwords. There were a bunch of things, and I had no idea. Then you start to put the puzzle together and it makes sense. Then you have to deal with it. So, you got to sit there and try to push through her to treat this and try to make doctors' appointments. So, at that time if there was help from a volunteer navigator, that would have been great. - Caregiver Caregivers described that the journey is a process of repeatedly navigating a new normal as dementia manifests differently in everyone making the caregiving experience hard to predict and requiring individualized and adaptive support. When caregivers described the uniqueness of 147 these situations, they often highlighted how a volunteer navigator would be an effective support as they would provide informal 1:1 support. The support has to change depending on what the situation is for every individual because, of course, nobody with Alzheimerâs is at the same path at the same time. Some people progress slowly, some very quickly, some are passive and some are aggressive. - Caregiver Each personâs dementia is completely different. Thereâs not one set of rules with it. With other diseases it tends to be more cut and dry. This this, there isnât a set order. So, to have a second person, a second voice to walk you through things is so important. - Caregiver Iâve seen so many different scenarios and personalities and different dementias that when people ask what to expect and what to do I say... there are no set rules, expect the unexpected. - Caregiver Iâm five and a half years into this Alzheimerâs. So, I have just learned from trial and error, and always changing and figuring out what our new normal is. I think you always need tips because these things are always changing. - Caregiver 3.5.3.5.1.8 Listening is a double-edged sword This theme explores opposing views among caregivers regarding the value of listening as a support service provided by volunteer navigators. Primarily, caregivers indicated they either found listening to be a beneficial essential service or an insufficient support. In some cases, caregivers did not describe listening as good or bad and just noted that it was a service provided by volunteer navigators that allowed them to vent and reflect. 148 This was a nice experience. It wasnât a bad experience. And it was nice to have someone where I could just talk about [person living with dementia name] and not feel like.. I donât know.. Where I could be selfish, I guess (laughter). That was good, you know. - Caregiver For me having the volunteer navigator listen wasnât really what I needed. I could probably do fine without it. But I also appreciated that it made me sit down and be more reflective about everything that was going on. By having somebody be there to have conversation around specific needs of the person youâre providing health to, plus also making you be reflective in how youâre using your time or how youâre responding to the demands. - Caregiver Caregivers who found listening beneficial described volunteer navigators as objective people who allowed them to vent, focused on their needs, helped them process their emotions, followed up on discussion topics, and made them feel less alone, comforted, and reassured. A good memory from this program is that I was able to talk about my feelings and just have comfort and safety and a non-judgmental, a listener, all those beautiful qualities. And sometimes you want information and you want to be able to get to the nuts and bolts of things. Sometimes you just want to ramble and be heard. - Caregiver I found it very beneficial just to have someone listen to me that wasnât part of the family or judging. Not that my family judged me, but theyâre all usually in support of [the person living with dementia name]. Like, not against me, but everybodyâs always trying to think âwhatâs best for [person living with dementia name]?â. And sometimes, I need somebody to listen and ask what is best for me. The volunteer navigator was very kind and an easy person to talk to. You just need someone to listen and be supportive. - Caregiver 149 Objectively, the most important thing the volunteer navigator did was listen. Itâs not just listening. Like âTell me your story. Good-bye. See you againâ. That, to me, thatâs a waste of time usually. But if thereâs things that they keep going back to, being able to work that through. - Caregiver Caregivers who found listening insufficient described it as the same support that a friend could offer and viewed it as the only support that volunteer navigators could provide. Further, caregivers highlighted that volunteer navigators did not know enough about dementia to provide meaningful support through conversations. Overall, their perspective was that listening is âjust listening.â Other than just talking about things they havenât really been able to help me. I wouldnât say that in terms of knowledge, that I am any smarter than I was when they started. To me, there just hasnât been anything there, you know what I mean. - Caregiver When the volunteer navigator got back to me she wasnât any better than a friend would have been. You know, like, there was nothing special about our call and I thought it would have been better. I donât know what the training is that they get. I donât know what I expected. But whatever it was it didnât click. Itâs not that it was bad at all. Itâs just that I donât know what I needed, but I needed something. And that time I didnât get it from her. - Caregiver I donât know if I will continue with this. Itâs kind of one more person to talk to. I have a priest that I can talk to right now, and three very very close friends that we sometimes sit and cry. It is not something that I really need right now. Heâs been very kind, itâs nothing against him personally, right. But I am just not getting a lot from him, not through his fault. It was just one more thing. I have better support elsewhere. â Caregiver 150 3.5.4 Discussion: Study Two The purpose of Study Two was to conduct a pilot feasibility study to assess the feasibility of adapting Nav-CARE to support caregivers of persons living with dementia. Findings from this study provide five key insights on the feasibility of adapting the Nav-CARE program to support caregivers of persons living with dementia that relate to the key domains of feasibility: (1) assessment procedures, (2) implementation resources, (3) intervention delivery, adherence, and safety, and (4) acceptability (Aschbrenner et al., 2022). The first is that volunteer navigators can provide emotional, relational, and navigational support. The second is that volunteer navigators need to have a deep understanding of dementia and caregiving to support caregivers. The third is that caregivers need to be connected to Nav-CARE at the beginning of the caregiving journey. This insight addresses several themes, encompassing ways to address how longitudinal, individualized, and adaptive support is provided, how meaningful relationships are developed, and how the complexities of dementia navigation are mitigated. The fourth insight underscores the necessity of recognizing a holistic view of the caregiving experience. The fifth insight emphasizes that volunteer navigators can support the dyad by directly supporting caregivers of persons living with dementia. Together, these insights emphasize, in different ways, how caregivers can be supported in recognizing and addressing their own needs. Collectively, these insights outline the feasibility of adapting Nav-CARE, highlighting its acceptability, the extent to which it was delivered as intended, the approach and resources involved in its administration, and key areas for improvement to better support caregivers and persons living with dementia. Findings from this research will inform the implementation of the adapted Nav-CARE program at existing Nav-CARE sites and future research evaluating the programâs effectiveness. Further, 151 this research may contribute to expanding the growing body of literature on dementia navigation programs by exploring a unique volunteer-led model. 3.5.4.1 Volunteer Navigators Can Provide Emotional, Relational and Navigational Support Findings from this study suggest that volunteer navigators can provide valuable emotional, relational, healthcare and legal system support to caregivers. This suggests that adapting the Nav-CARE program to support caregivers of individuals living with dementia is feasible, as volunteer navigators generally provided support as intended, and caregivers found this support acceptable. However, some adjustments are needed to increase the program's fidelity, adherence, and acceptability. The need for these adjustments is illustrated by examining listening, one of the key supports provided by volunteer navigators and discussed extensively by volunteer navigators and caregivers. In this study, listening was one of the most common forms of support provided by volunteer navigators and was often discussed separately from other forms of emotional and relational support. As such, it is important to consider all the factors that influence volunteer navigatorsâ ability to be strong listeners and what makes caregivers feel heard and that listening is valuable. Listening is provided in many existing dementia navigation programs and has been noted as a key facilitator to supporting caregivers and persons living with dementia (Anthonisen et al., 2022). Caregiversâ and volunteer navigatorsâ perspectives on the value of listening varied depending on the dyadâs needs. Caregivers often determined the value of listening by the volunteer navigatorsâ level of understanding of dementia and caregiving. For example, some caregivers suggested they did not require listening at their current stage of the caregiving journey 152 and/or generally did not recognize the value of this type of support, while others emphasized that listening was the most important and impactful support provided by volunteer navigators. These differing perspectives highlight the need for volunteer navigators to develop a meaningful relationship with caregivers, understand their unique needs and preferences, and provide support accordingly. For example, some caregivers may benefit most from emotional and vulnerable conversations, while others will benefit from practical assistance such as attending doctor appointments, coordinating care, and accessing information and community resources. The balance of providing emotional, relational, and navigational support should be determined on a case-by-case basis. However, strong volunteer navigator listening skills remain important as listening is foundational to understanding caregivers and providing both emotional and navigational support. To increase the value of listening, volunteer navigators may need to provide additional practical support that is informed by the insights gained through listening. By doing so, volunteer navigators may be able to provide support as intended more frequently, and caregivers may find the Nav-CARE adaptation more acceptable. Emotional, relational and navigational supports are fundamental in existing dementia navigation programs and have contributed to improvements in caregiversâ coping abilities and self-care (Rosenbloom et al., 2023), caregiversâ self-efficacy, depression, burden, financial planning and unmet needs, quality of life of the caregiver (Giebel et al., 2023), caregiversâ social support, and mastery of caregiving (Kokorelias et al., 2023), and quality of life of the person living with dementia (Rosenbloom et al., 2023), among other improvements. These supports have also contributed to important service-related outcomes such as improved navigation of the healthcare system, increases in the development and implementation of advanced care directives (Rosenbloom et al., 2023) and increased use of clinical and non-clinical services, as well as 153 decreases in emergency department visits among persons living with dementia, and spending on institutional long-term care services due to redistribution of spending to in-home care (Giebel et al., 2023) and delayed institutionalizations (Kokorelias et al., 2023). As such, the adapted Nav-CARE program may contribute to similar positive impacts for caregivers and persons living with dementia. 3.5.4.2 Volunteer Navigators Require a Deep Understanding of Dementia and Caregiving In this study, caregivers and volunteer navigators frequently highlighted the need for volunteer navigators to have a deep and nuanced understanding of dementia and caregiving to provide support. This suggests that while support was generally acceptable, some adjustments to the volunteer navigator training are needed to increase the program's fidelity, adherence, safety and acceptability. Volunteer navigators and caregivers often noted that a lack of dementia and caregiving knowledge among volunteer navigators prevented them from providing optimal support. In many dementia navigation programs, education on dementia and caregiving is a core component of navigator training (Giebel et al., 2023; Kokorelias et al., 2023; Rosenbloom et al., 2023). Among these programs, navigator training is provided using a variety of materials, including didactic videos and customized written tools, which have contributed to improving navigatorsâ understanding of the complex symptoms and progression of disease (Kokorelias et al., 2023; Rosenbloom et al., 2023). These programs infrequently note the need to increase education among navigators and instead sometimes highlight the need to increase education among caregivers (Kokorelias et al., 2023). The differences in findings between the literature and this research could be explained by the fact that many navigation programs utilize navigators who are either clinically trained, working in paid navigator positions, and/or being supported by 154 an interdisciplinary clinical team (Kokorelias et al., 2023; Rosenbloom et al., 2023). Although the dementia education training in the adapted Nav-CARE program was similar to training provided in other dementia navigation programs, the adapted Nav-CARE program utilized trained volunteer navigators who may not have clinical backgrounds and are not supported by a clinical team. For example, volunteer navigators could not ask dementia-related questions to a clinical team working closely with them. As such, the dementia and caregiving education for the adapted Nav-CARE program may need to be more comprehensive to account for these differences in knowledge and/or clinical support. Volunteer navigators need general dementia and caregiving knowledge; however, specific knowledge is also essential. In this study, volunteer navigatorsâ self-perceived efficacy scores demonstrated the important difference between general and specific knowledge. Most volunteer navigators rated their ability to understand keywords and definitions relating to dementia and caregiving as good to excellent. However, qualitative interviews revealed that volunteer navigators felt they required a deeper knowledge of dementia and caregiving to be effective in their role. This may suggest that the knowledge that is required to be a volunteer navigator goes beyond general knowledge and needs to include the complexities of the dynamic, relational, and contextual factors that impact dementia and caregiving. Self-perceived efficacy scores also demonstrated that most volunteers felt they could engage in challenging conversations about dementia. However, they were less confident in their ability to identify community resources and assist caregivers and persons living with dementia in accessing them. This may suggest that while volunteer navigators feel they have enough knowledge to talk about challenges, they lack the deeper knowledge required to help find solutions. This sentiment was consistent in qualitative interview data, which revealed volunteer navigatorsâ desire for more 155 education on community resources, the healthcare system, and the dementia condition to provide adequate support. This further emphasizes the importance of complex, contextual and deep understandings of dementia and caregiving. The findings from this study also emphasize an increased need for dementia and caregiving education that is more specific to the relationships between dyads, unique circumstances and community factors. For example, volunteer navigators should have a deep and thorough understanding of the challenges caregivers face in identifying and addressing their own needs, the ways personal circumstances require caregivers to focus primarily on the needs of the person living with dementia, and how each caregiver requires unique and adaptable support. These specific circumstances impacted the type of conversations volunteer navigators and caregivers had, the ways in which they took place and the type of knowledge volunteer navigators required. This specificity and nuanced knowledge of dementia and caregiving is not highlighted by other dementia navigation programs (Giebel et al., 2023; Kokorelias et al., 2023; Rosenbloom et al., 2023), which could be attributed to the differences in navigator educational backgrounds, roles and team support. However, these findings contribute to refining the scope of education that should be provided in training for volunteer navigators. Increasing volunteer navigatorsâ knowledge of dementia can increase the safety and acceptability of the adapted Nav-CARE program for both volunteer navigators and caregivers, as volunteer navigators may feel better equipped to provide support, caregivers may find more value in the support they provide, and a safe space for support can be more effectively established. To increase knowledge of dementia among volunteer navigators, Nav-CARE may require additional implementation resources, such as longer and more comprehensive volunteer navigator training and increased collaboration with primary healthcare providers. Additionally, 156 providing more education could enhance volunteer navigators' ability to deliver the intended support by equipping them with the knowledge needed to help caregivers navigate the healthcare system, access resources, and engage with their communities. 3.5.4.3 The Importance of an Early Connection Between Nav-CARE and Caregivers Findings from this study highlighted the need for the adapted Nav-CARE program to provide longitudinal, individualized and adaptive support, as this format of support was recognized by both caregivers and volunteer navigators as being essential to the acceptability of the intervention. To receive this support, caregivers indicated they need to be connected to the Nav-CARE program and a volunteer navigator at the time of diagnosis. When connected early, caregivers can be supported through the initial challenges and develop a meaningful relationship that will enhance the support a volunteer navigator provides later in the journey. Many dementia navigation programs are integrated with clinics and/or are administered by interdisciplinary teams of nurses, pharmacists, clinicians, or trained non-clinical workers (Anthonisen et al., 2022). As such, these programs have an inherent ability to connect with caregivers at the beginning stages of their journey. Other programs such as First Link, which utilizes non-clinical personnel, are connected to clinical providers as they utilize a physician referral system (Anthonisen et al., 2022), which could improve timely access to support. However, physiciansâ lack of understanding of the programâs services has resulted in several unsuccessful referrals and challenges in establishing clients (Anthonisen et al., 2022). To facilitate earlier connection to volunteer navigators, is important to ensure Nav-CARE continues to be administered through hospice sites who utilize a palliative approach to care, have 157 a strong understanding of Nav-CARE services and are connected to community members. Sometimes, the palliative approach to care can be understood as specialized care that is provided only at the end-of-life (Cloutier et al., 2021). However, other conceptualizations focus on palliative models that are holistic and provide care throughout their journey in ways that meet the individualsâ unique needs (Cloutier et al., 2021). Often, hospices can be interpreted as a service that provides the former rather than the latter. However, integrating the Nav-CARE dementia adaptation program within hospices can contribute to further establishing the holistic, adaptive and ongoing model of palliative care. Nav-CARE may also engage meaningfully with primary care providers to further enhance the program. For example, the Nav-CARE team could provide educational sessions with primary care providers, such as lunch and learn presentations, to educate physicians on the programâs services and provide time to answer questions, subsequently contributing to appropriate and successful referrals. To avoid unsuccessful and inappropriate referrals, establishing a physician referral system requires a focused, collaborative and integrated approach. While facilitating earlier connection to volunteer navigators, this approach may also reduce the stigma and fear associated with palliative care and receiving hospice support for a dementia diagnosis by also establishing a program presence within the context of primary care. As such, this approach would enhance volunteer navigatorsâ ability to provide the support as intended, as they could connect with caregivers at the beginning of their caregiving journey, allowing for longitudinal, adaptive, and individualized support throughout the disease trajectory. 3.5.4.4 Recognizing a Holistic View of the Caregiving Experience This study highlighted that while caregivers faced challenges, many were still able to demonstrate their resilience and ability to find joy. This is important as it demonstrates that 158 increasing the acceptability of an intervention can, and should, focus on enhancing and adding positive experiences rather than primarily prioritizing issues and deficits. Caregivers highlighted how they could engage in self-care and activities that bring them joy despite the sadness and burden experienced in their caregiving role. It is important to recognize caregiversâ resilience and joy as the negative aspects of caregiving are often the primary focus of research, despite both positive and negative aspects co-existing and influencing one another (Wang et al., 2022). Further, positive components of caregiving can protect against negative aspects such as burden and stress, which further emphasizes the importance of adopting a holistic view of the caregiving experience (Stansfeld et al., 2017). By highlighting caregiversâ joy, we can identify ways to add more positive experiences to their lives, rather than focusing solely on reducing the negative experiences. Further, discussing the value of joy, volunteer navigators can learn to integrate asking positive questions such as, âwhat is going really well for you and how can we add more of this?â instead of only asking âwhat challenges are you facing and how can we address them?â. While seemingly similar, these questions can elicit very different responses. For example, this shifted focus can contribute to volunteer navigators encouraging unique interventions such as listening to or playing music, and engaging in physical activity, games, art, movies, and nature. Further, this shift can contribute to re-conceptualizations and identification of positive outcome measures to assess the caregiving experience, which is important as most existing outcome measures evaluate the negative experiences (Stansfeld et al., 2017). In this study, sometimes system issues presented barriers to addressing caregiving challenges within the scope of a volunteer navigator role. However, understanding what brings caregivers joy requires the development of a meaningful relationship over time, which Nav-CARE volunteer navigators are uniquely positioned to establish. By providing encouragement and connecting caregivers to 159 additional resources and/or activities that add joy, volunteer navigators can enhance the efforts caregivers are making to bring joy into their lives and develop a more holistic view of the caregiving experience. 3.5.4.5 Supporting the Dyad Caregivers and volunteer navigators in this study repeatedly emphasized the importance of supporting persons living with dementia in addition to caregivers, which provides important insights into the adjustments that should be made to increase the program's acceptability. A key component of the adapted Nav-CARE program is that all support from volunteer navigators is provided directly to caregivers as they require significant support, have many unmet needs, and are often managing the care of the person living with dementia (Cheng et al., 2020). However, the indirect support that the adapted Nav-CARE program provides to persons living with dementia can be improved. For example, caregivers described significant barriers that prevented them from connecting the person living with dementia to sufficient support. One of these barriers included caregiversâ lack of understanding of the system and how to navigate it. As outlined above, with a deep understanding of dementia, caregiving, and system challenges, volunteer navigators can support caregivers in navigating those difficulties. In doing so, volunteer navigators can increase and improve access to support for persons living with dementia, which is beneficial to the dyad as a whole. Existing dementia navigation programs primarily focus on supporting the person living with dementia, providing indirect support to caregivers or working directly with them as a secondary focus based on the needs of the person living with dementia (Giebel et al., 2023; 160 Kokorelias et al., 2023; Rosenbloom et al., 2023). As such, the adapted Nav-CARE program demonstrates how persons living with dementia can be supported indirectly while focusing on supporting caregivers' needs first. This shifted focus is important as it increases the value placed on caregivers and demonstrates a unique way to provide navigational support in dementia care. However, it may be important to consider approaches that also include providing support directly to persons living with dementia. For example, if a relationship is established between the volunteer navigator and person living with dementia, it may be possible for them to engage in 1:1 visits. This would provide caregivers with time to run errands and/or practice self-care. Findings from this study highlighted caregiversâ desires for increased options for respite and for the person living with dementia to have opportunities for social engagement. As such, this dual approach to support would address the dyadâs needs, further enhancing the program's acceptability. In addition, by explicitly emphasizing the importance of supporting both the caregiver and person living with dementia, the adapted Nav-CARE program can honour the relational and dynamic aspects of dementia and caregiving, which are fundamental to providing adequate support (Allison et al., 2019; Nolan et al., 2004). 3.5.5 Summary: Study One and Study Two Collectively, findings from this research outline the feasibility of adapting the Nav-CARE program to support caregivers of persons living with dementia. The first phase, which consisted of a modified e-Delphi study, established a comprehensive list of caregiversâ needs and the competencies volunteer navigators require to support caregivers to meet these needs. Caregiversâ needs related to relationships, personal, physical and emotional health, practical needs, finding and accessing care-related resources, accessing information, and addressing the 161 dyadâs healthcare related needs. Volunteer navigator competencies related to relational skills, supporting caregiver well-being, supporting the dyad, identifying and assisting with accessing healthcare services, knowledge of dementia and dementia stigma, and volunteer self-care. This content informed the development of the volunteer navigator dementia training manual used to train volunteer navigators in Study Two, the pilot feasibility study. Findings from Study Two provided insight into four key feasibility domains: (1) assessment procedures, (2) implementation resources, (3) intervention delivery, adherence, and safety, and (4) acceptability (Aschbrenner et al., 2022). Overall, findings demonstrated that it is feasible to adapt Nav-CARE to support caregivers of persons living with dementia. However, adjustments are needed to ensure the program is delivered as intended and to enhance its acceptability among both volunteer navigators and caregivers. The high response rates and comprehensive data from the Volunteer Navigator Experience and Self-Perceived Confidence Questionnaire demonstrate that this assessment procedure was both effective and acceptable. Similarly, the semi-structured interviews, in which all eligible participants took part and data saturation was reached, were effective and acceptable. However, Volunteer Navigator Visit Reports were completed infrequently and, when submitted, often lacked thoroughness. Therefore, an alternative assessment procedure should be considered to evaluate each visit. Specific findings highlighted that the program was meaningful to caregivers and volunteer navigators. They developed strong relationships, with some anticipating these connections will extend beyond the scope of the research. Volunteer navigators primarily provided emotional and relational support, while also providing some healthcare and legal system navigational support. Some caregivers found the emotional and relational support valuable, while others felt it inadequate. However, many caregivers were united in their desire for increased practical 162 navigation support. The lack of navigational support provided by volunteer navigators may be attributed to their inadequate knowledge of dementia and caregiving, which both volunteer navigators and caregivers noted. Enhanced knowledge could improve volunteer navigators' ability to offer practical, emotional, and relational support by deepening their understanding of the challenges caregivers face. This, in turn, could lead to better program delivery, increased adherence, and greater acceptability. Additionally, the need for improved knowledge highlights the importance of considering the resources necessary to provide effective training and ongoing support for volunteer navigators. It is also necessary to more thoroughly consider the interconnectedness of caregivers and persons living with dementia. Given the critical importance caregivers place on addressing the needs of persons living with dementia, refining the program's approach to meeting these needs is essential for enhancing its overall acceptability. Additionally, caregiversâ desire for longitudinal, individualized, and adaptive support throughout their caregiving journey highlights the need to promote earlier access to the Nav-CARE program to enhance program delivery and adherence. Increased collaboration with primary care providers could be one way to achieve this. Finally, the adapted Nav-CARE program may contribute to meeting the needs of caregivers and persons living with dementia, thereby increasing their overall quality of life. 3.5.6 Limitations: Study One and Study Two It is important to note the limitations of Study One. The expert panel consisted of 35 individuals with diverse expertise relating to dementia. Despite the broad range of expertise, a larger sample may have contributed to more diverse insights. Additionally, the sample was 163 primarily comprised of women. As a result, additional insights from a more gender-diverse sample, which could have been valuable for developing volunteer competencies, were not included. As the questionnaires were administered through the Internet, only individuals who had access to a computer and an understanding of how to use it could respond. While this allowed for the inclusion of experts across Canada, it also may have excluded valuable participation from those who do not have Internet access or an understanding of how to use the technology. Experts were provided with the questionnaires and given one month to respond. As they did not complete the questionnaires with a researcher present, they could not ask clarifying questions if needed. As a result, any confusion regarding the questions may have led to responses that do not accurately reflect their perspectives. To mitigate this risk, prior to administering the questionnaires, the language was reviewed by an Advisory Board of caregivers. Further, experts were informed that they could contact the research team for clarification. Study Two had limitations that should be highlighted. This research was conducted in a rural community, which limits the generalizability of the findings to urban areas or communities with different demographics, characteristics, and contexts. The study consisted of 35 participants who were either volunteer navigators or caregivers. The caregiving experience can vary significantly based on individual, family, and community circumstances. Therefore, a larger sample size could have provided a more comprehensive representation of the diversity of these experiences. All participants were recruited through the network of the partner hospice organization, meaning they all had engaged with hospice or community resources. As a result, the data may over-represent engaged caregivers and volunteers, potentially offering an incomplete understanding of the broader community's needs. Data were collected virtually through phone calls, Zoom meetings, and email. As such, it was sometimes challenging to 164 establish strong relationships with participants. This may have reduced their willingness to share their perspectives, resulting in less honest and/or nuanced data. To address this limitation, I tried to foster a safe space for participants to share their experiences by frequently communicating with them, being available to them when needed, and being empathetic. This strategy appeared successful as caregivers expressed diverse and sometimes negative opinions about the intervention. It was challenging to determine how well the intervention was implemented due to a lack of visit reports submitted by volunteer navigators and missing data within submitted reports. For example, I could not determine the total number of visits that took place and their length, which is important information to understand the intervention delivery and adherence. 3.5.7 Implications for Policy, Practice and Research Findings from this research can help inform policy, practice, and research efforts related to dementia navigation programs that intend to improve the lives of caregivers and persons living with dementia. There is a growing emphasis on caregivers and our need to support them, as demonstrated in The World Health Organization (WHO) Dementia Action Plan and the National Dementia Strategy, which recognize supporting dementia caregivers as a priority action area (Public Health Agency of Canada, 2019; World Health Organization, 2017). While global and national recognition is important, caregivers should also be recognized and prioritized at the community level. This can be achieved through policies supporting the continued refinement, adaptation, development, and implementation of programs focusing on the dyad. This research emphasized the inextricable link between the needs of caregivers and persons living with dementia. As such, future programs that can support the dyad should be prioritized, and existing programs that provide support directly to persons living with dementia should also consider how support can be provided directly to their caregivers. Such policy support will underscore the 165 importance of supporting caregivers and persons living with dementia, honouring the principles of RCC. This research has important practice implications, demonstrating that adapting the Nav-CARE program, which relies on trained volunteer navigators, is feasible for supporting caregivers of individuals living with dementia. As a uniquely volunteer-led program, the adapted Nav-CARE model may help expand the understanding of who can provide dementia navigation services and how interdisciplinary collaboration and support can be integrated. In many existing dementia navigation programs, coordinators are supported by a clinical team and are non-clinically trained employees or have backgrounds in nursing, social work, and other clinical professions (Giebel et al., 2023; Kokorelias et al., 2023). This study highlighted the potential value and importance of a unique volunteer navigator role. Volunteer navigators, who may not have a clinical background or clinical team support but receive specific and thorough training, are uniquely positioned to offer valuable support. For example, they have the time to establish a deep and meaningful relationship with the caregiver and person living with dementia, enabling them to provide practical, longitudinal, and relational support. As such, volunteer navigators may be able to serve as collaborators with other professionals, even if they are not working directly with navigation programs. For example, volunteer navigators may increase the capacity of professionals by supplementing the support they provide in regular clinical and community settings. When volunteer navigators can provide relational and navigational support, clinical professionals may be able to focus more of their time on supporting the dyad with important needs typically addressed within their scope of practice (e.g., medications and clinical assessments). As such, the volunteer navigator can increase the support a caregiver and person living with dementia receives. 166 It is important to develop programs that connect caregivers to support early in the caregiving journey to receive relational, longitudinal, and adaptive support (Huggins et al., 2023). This research emphasized the importance of providing such support and connecting caregivers to programs early in the caregiving journey, ideally immediately after a dementia diagnosis is made. This insight challenges how we currently envision and structure support systems. For instance, community-based programs like Nav-CARE are often not connected with primary care providers, who serve as the main point of contact for caregivers throughout their journey (Sideman et al., 2023). Therefore, it is crucial to consider what resources are needed and how to improve the integration of dementia-specific community resources with primary care. This could help create a more cohesive, less fragmented, and less complicated system. This finding is particularly significant as it may guide efforts to rethink how we position supports and foster collaboration between primary care providers and community organizations. As such, the adapted Nav-CARE program may help inform the development of dementia navigation programs by highlighting key areas for potential collaboration and the importance of various types of support, leading to larger-scale practice improvements. This study has meaningful implications for future research of dementia navigation programs. First, this research was a pilot feasibility study. As such, future research should be conducted to examine the programâs effectiveness and impact. Second, this research underscores the importance of addressing caregivers' needs, as they are vital to the dementia care community, and the support that is provided to caregivers can impact the person living with dementia. Many existing dementia navigation programs provide direct support to persons living with dementia and support caregivers indirectly or as a secondary focus (Kokorelias et al., 2022). However, caregivers face numerous unmet needs and are deeply connected to individuals living with 167 dementia, with their own health and well-being inextricably linked to those they care for. As such, future research should have an increased focus on developing new supports and examining existing supports that meet the needs of both caregivers and persons living with dementia. Third, while the caregiving experience is often framed and discussed in negative terms, it is crucial to recognize and promote the positive aspects of caregiving. Future research should include questions that focus on caregiver resilience and aim to enhance positive experiences while also addressing the key systemic issues affecting both the caregiver and the person with dementia. 3.5.8 Conclusion This research aimed to adapt the Nav-CARE program to support caregivers of persons living with dementia and evaluate the feasibility of doing so. Findings suggest that adapting the Nav-CARE program to support this population is feasible. However, some adjustments are needed to improve the programsâ intervention delivery, adherence, and acceptability. As this research assessed the feasibility of adapting the program, future research is needed to understand the programâs effectiveness and impact. While the assessment procedures used to evaluate feasibility were generally effective, adapting the Volunteer Navigator Visit Reports is crucial for gaining a more comprehensive understanding of the intervention's fidelity. While there are existing programs to support caregivers, many of their needs remain unmet (Bressan et al., 2020). By applying the principles of RCC and focusing on providing emotional, relational, and practical support, the adapted Nav-CARE program has the potential to meet the evolving and interconnected needs of both caregivers and persons living with dementia. 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Table 1: Rapid Review Search Strategy Search Strategy Database Search String MEDLINE âcaregiversâ MH, âdementiaâ MH, âAlzheimerâs diseaseâ MH, âcognitive dysfunctionâ MH, (1)âdementiaâ OR âAlzheimerâs diseaseâ OR âcognitive dysfunctionâ, (2)âcaregiversâ AND âdementiaâ OR âAlzheimerâs diseaseâ OR âcognitive dysfunctionâ, (3)âsystematic reviewâ MH, combined search (1), (2) and (3) CINAHL âcaregiversâ MH, âdementiaâ MH, âAlzheimerâs diseaseâ MH, âcognitive dysfunctionâ MH, (1)âdementiaâ OR âAlzheimerâs diseaseâ OR âcognitive dysfunctionâ, (2)âcaregiversâ AND âdementiaâ OR âAlzheimerâs diseaseâ OR âcognitive dysfunctionâ, (3)âsystematic reviewâ MH, combined search (1), (2) and (3) EMBASE âcaregiversâ MH, âdementiaâ MH, âAlzheimerâs diseaseâ MH, âcognitive dysfunctionâ MH, (1)âdementiaâ OR âAlzheimerâs diseaseâ OR âCognitive Dysfunctionâ, (2)âcaregiversâ AND âdementiaâ OR âAlzheimerâs diseaseâ OR âcognitive dysfunctionâ, (3) âsystematic reviewâ, combined search (1), (2) and (3) A2. Table 2: Rapid Review Inclusion and Exclusion Criteria Inclusion and Exclusion Criteria Inclusion Exclusion English Language Systematic Review Reported outcomes for an intervention for caregivers of older persons living with demenatia Reviews addressing needs of caregivers when the care recipient is being transferred to long-term care. Reviews that targeted person living with dementia. Reviews focused specifically on grief and bereavement of caregivers. Reviews specific to early onset dementia. 186 Reviews focused on a specific subset of the caregiver population (e.g., ethnicity specific). Reviews that focused only on professionally-delivered interventions (e.g., mental health interventions). Reviews published during or after the year 2000 A3. Table 3: Rapid Review Intervention Categories Intervention Categories INTERVENTION CATEGORY INTERVENTIONS IN SYSTEMATIC REVIEWS PSYCHOSOCIAL AND SOCIAL SUPPORT INTERVENTIONS Support groups, role play, counselling, stress and mood management, CBT, general social support, befriending, peer support, respite KEY WORKERS Admiral nurses, guidance by a coach, professionals, volunteers TECHNOLOGY BASED INTERVENTIONS Any type of intervention administered electronically, telephone based supports, e-health, computer based MULTICOMPONENT INTERVENTIONS Interventions that utilize more than 1 form of intervention together CASE MANAGEMENT/CARE COORDINATION Case management, care coordination PSYCHOEDUCATIONAL INTERVENTIONS Interventions providing people with information (about their personal needs, and the care-recipientâs needs), social skills training EXERCISE AND HEALTH PROMOTION Complimentary and alternative medicine (CAM) therapy, healing touch (e.g. registered massage therapist), yoga, meditation, aerobics, strength, balance, occupational therapy 187 A4. Table 4: Rapid Review Outcome Categories Outcome Categories OUTCOME CATEGORIES OUTCOMES IN SYSTEMATIC REVIEWS BURDEN Burden, stress DEPRESSION AND ANXIETY Depressive symptoms, depression, anxiety, and psychological morbidity SOCIAL OUTCOMES Social support, support needs, being supported, reduced isolation, and loneliness KNOWLEDGE AND SKILLS Sense of competence, mastery, educational needs, knowledge, ability/knowledge, receiving accessible and personalized information, being trained and educated to care for beloved with dementia, sense of competence, decision-making confidence, self-efficacy, self-esteem, and ability to continue with caring role HEALTH AND WELL-BEING Physical well-being, mental well-being, general health or well-being, subjective well-being, psychosocial well-being, neuropsychiatric symptoms, and mood QUALITY OF LIFE Balance between caregiver and care-recipient needs, and positive aspects of caregiving HEALTHCARE SERVICES UTILIZATION (CAREGIVERS AND CARE-RECIPIENTS) Time for the care recipient to be institutionalized, move into long-term care, hospitalizations, and number of volunteer visits A5. Table 5: E-Delphi Final Caregiversâ Needs Categories and Statements Needs Category Needs Statements Relationship Needs Someone to assist caregivers in making connections to develop/strengthenâ¦ Relationships with other caregivers Relationships with the care-recipient Relationships with their family members Relationships with their friends 188 Stigma Specific Relationships with their wider social circle (e.g., employer, colleague, childrenâs teacher, school counselor, neighbor) Relationships with their healthcare providers It is important to have someone assist caregivers in identifying and negotiating stigma associated with dementia caregiving Personal, Physical and Emotional Health Needs Someone toâ¦ Engage in enjoyable activities with Listen to their experiences and concerns Help identify their physical health needs Help identify resources to support their physical health needs Help identify their emotional health needs Help identify resources to support their emotional health needs (e.g., grief, sadness) Help to stay and/or become physically active Provide support with experiencing grief Help access resources to manage chronic health conditions (e.g., depression, anxiety, heart conditions) Encourage the communication of personal and emotional needs Caregiversâ Various Personal Needs Someone to assist caregivers with finding help toâ¦ Make adaptations to their homes to accommodate their care recipient Do home maintenance Cook Clean Complete yard work Shop and do errands 189 Complete paperwork and applications for support services Finding and Accessing Care-Related Resources Someone to assist caregivers with finding and accessingâ¦ Programs that support their needs (e.g., health authority services, support groups, financial assistance for services such as cooking/cleaning/yard services) Health assessments for their care-recipients (e.g., cognitive assessments if their condition seems to be worsening, occupational therapist assessments for the physical environment) Consistent and coordinated support from healthcare providers (e.g., from the dementia diagnosis onwards) After hour programs (e.g., someone to call for support, someone to come over to help with care outside of regular work hours) Tailored programs that are specific to their care-recipientâs needs Comprehensive local support agencies (e.g., Alzheimerâs Society) A document outlining the necessary personal information about the care-recipient that is required to advocate on their behalf in a variety of ways (e.g., SIN, ID number, account numbers, passwords, pension plan, doctor information etc.) Respite services Accessing Information Someone to assist caregivers with accessing information aboutâ¦ Dementia (e.g., risk factors, symptoms, what to expect throughout the disease trajectory, treatment) Engaging in conversations about dementia (e.g., telling their social and professional networks about the dementia diagnosis) 190 Strategies to manage their care recipientsâ health (e.g., physical and emotional) Helping their care-recipient to have independence Supporting their care-recipient with personal care tasks Making physical adaptations to their care-recipientsâ living environment (e.g., door chimes, removing dangers that may increase their risk of injury) Financial resources and support (e.g., government funding, caregiver tax benefits, subsidized care) How to improve their skills in computers to improve their access to information (e.g., computer skills training, digital competencies, telephone competencies for virtual appointments, tracking the care-recipientsâ symptoms) Caregiversâ and/or Persons Living with Dementiaâs Various Healthcare Related Needs Someone to assist caregivers with meeting their healthcare related needs byâ¦ Talking to healthcare providers Identifying providers that can help them Booking and scheduling appointments Finding health region specific resources Informing healthcare providers about their specific circumstances and needs Filling out healthcare paperwork 191 A6. Table 6: E-Delphi Final Competency Categories and Statements Competency Category Competency Statements Volunteer Relational Skills 1.Communicate effectively with caregivers and care-recipients 2. Assess caregiversâ and care-recipients; physical, social and emotional needs 3. Determine caregiversâ preferred ways of communication 4. Support caregivers while being open, empathetic, compassionate, and non-judgmental 5. Develop positive conversations about aging and memory loss 6. Understand ethical volunteer/client relationships including prioritizing confidentiality Supporting Caregiver Well-Being 1.Determine how to support caregivers in establishing and maintaining social connections 2. Identify creative ways to provide adequate support to caregivers 3. Identify the âbig pictureâ issues and be able to prioritize needs/tasks 4. Identify common emotional experiences caregivers may be encountering and when to assist caregivers in accessing professional help 5. Build capacity in supporting caregivers and care-recipients with grief, vulnerability, depression and anxiety 6. Assist caregivers in learning and engaging in self-advocacy 7. Assist caregivers with utilizing technology (e.g., computer searches) 8. Assist caregivers in communicating about grief and burnout 9. Assist caregivers in self-assessing their personal health and well-being 10. Assist caregivers in determining their willingness to accept support from different resources and their preferred way to engage with and/or access these resources (E.g., a caregiver may prefer online support, a caregiver may not want support from a specific organization) 192 11. Identify respite options and ways to assist caregivers in accessing them Supporting the Caregiver and Care-Recipient Dyad 1.Determine what is meaningful to the caregiver and care-recipient dyad 2. Determine the best way to build a relationship with the caregiver and care-recipient dyad (e.g., what kind of communication works best, how they like to interact with healthcare providers) 3. Assess and assist caregivers in determining what relationships may need strengthening (e.g., with extended family members, with healthcare providers, between the caregiver and care-recipient) 4. Assist caregivers in navigating conflict with the care-recipient and or family members 5. Advocate to meet the dyadâs needs 6. Assist caregivers in determining quality-of-life concerns for themselves and their care-recipients Identifying and Assisting with Accessing Healthcare Services 1.Know caregivers and dementia support services available in the community and online (e.g., identifying the beneficial resources at the community, provincial and national level) 2. Identify how the healthcare system functions (especially regarding dementia related services) and assist caregivers in developing their understanding 3. Identify services and assist caregivers in accessing them (e.g., completing paperwork and required forms, accessing financial resources and supports) 4. Assist caregivers in overcoming barriers to accessing various services 5. Asist caregivers with planning access to services they may need in the future 6. Assist caregivers in tracking relevant healthcare information regarding their care-recipient Knowledge of Dementia 1.Provide strategies and support for engaging in challenging conversations about dementia (e.g., advanced care planning, changing abilities) 2.Communicate information about dementia with caregivers and their social networks 193 Knowledge of Dementia (Stigma) (e.g., help to explain what dementia is and/or what the disease trajectory entails to members of the caregiversâ social network) 3. Identify credible sources of information related to dementia and various associated health conditions 4. Assist caregivers in accessing information about dementia 5. Assist caregivers in contacting providers who can inform them about dementia 6. Assist caregivers in coping with symptoms of dementia and challenges associated with disease progression Stigma 1.Identify personal biases related to dementia 2.Assess how stigma is encountered by caregivers and the care-recipients 3.Assist in the co-development of a plan to negotiate and respond to experiences related to stigma Support for Volunteers 1.Build capacity to reflect on your experiences 2.Determine how to practice self-care and self-compassion while in a volunteer role 3.Build capacity in setting boundaries between yourself and the caregiver 194 Appendix B: Figures B1. Figure 1 Rapid Review Prisma Flow Diagram 195 B2. Figure 2 E-Delphi Panelist Recruitment Postcard (Page 1) (Page 2) 196 Appendix C: Supplementary Material C1. E-Delphi Consent Form *Embedded in the first questionnaire This questionnaire is part of the Nav-CARE: FCPLD study, which is being led by Dr. Barbara Pesut (Nursing, UBCO). By completing this survey, you will provide us with valuable information about the needs of caregivers of persons living with dementia, how important it is that those needs are met, and what knowledge, skills and abilities volunteers would require in order to meet these needs. This questionnaire contains a mix of closed, and open-ended questions. All responses will be kept confidential. The survey must be completed online and can be accessed here [ LINK ]. All data will be stored on an encrypted computer and/or the UBCO secure network. The online survey will use UBCâs Qualtrics secure survey platform and all data will be stored in Canada. The questionnaire should take approximately 1 hour to complete. If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, please contact any of the following: The Research Participant Complaint Line in the UBC Office of Research Ethics toll free at 1-877-822-8598 or the UBC Okanagan Research Services Office at 250-807-8832. It is also possible to contact the Research Complaint Line by email (RSIL@ors.ubc.ca). Please reference the study number H21-00067 when calling so the Complaint Line staff can better assist you. If you submit the completed survey it will be assumed that consent has been given. C2. E-Delphi Panelist Recruitment Script Do you have experience as a caregiver of an older adult with dementia? Do you have expertise in navigation, volunteer training and development? Do you have expertise in dementia? Are you willing to devote 4 hours of time over a few months to answer 3 sequential online surveys? If so, we would like to speak with you about participating in our study. In partnership with Health Canada, we are a team of researchers interested in adapting the Nav-CARE program for caregivers of older adults living with dementia. In order to adapt the program, we need to develop competencies and a curriculum that can guide the training of volunteer navigators. It is essential that we include the perspective of experts who have lived experience as caregivers, and/or who understand navigation, volunteer training and development, as well as dementia to ensure the development of these competencies are accurate and effective. As part of our data collection we are seeking to administer 3 sequential e-surveys and a discussion board to develop consensus regarding what competencies a volunteer should 197 have in order to fulfill roles to meet the needs of caregivers of persons with dementia, and the relative importance of each competency. Following this, the research team will develop an online curricular module to meet these competencies and train volunteers. You will then be asked to review the module to ensure it is appropriate. If you would like to learn more or are able to help us with this study, please contact the Research Coordinator, Madison Huggins, via email at madisonl.huggins@ubc.ca. Please do not respond publicly as your confidentiality will not be preserved. C3. E-Delphi Panelist Characteristics Questionnaire Question 1: What is your age? â¢ 18-24 â¢ 25-34 â¢ 35-44 â¢ 45-54 â¢ 55-64 â¢ 65+ Question 2: What gender do you identify with? â¢ Male â¢ Female â¢ Non-binary / third gender â¢ Prefer not to say Question 3: What do you consider your area of expertise in the context of this panel? *Please select all that apply â¢ Volunteerism â¢ Dementia â¢ Family and/or friend caregiving â¢ Clinical practice â¢ Navigation Question 4: How many years of experience do you have in your area of expertise? â¢ Less than 1 year â¢ 1-5 years â¢ 6-10 years â¢ 11-15 years â¢ >15 years Question 5: Are you a current family and/or friend caregiver of a person living with dementia? â¢ Yes â¢ No Display This Question: If âare a current family and/or friend caregiver of a person living with dementia?â = Yes Question 6: What is your marital status? 198 â¢ Single â¢ In a relationship â¢ Married â¢ Prefer not to say Display This Question: If âare a current family and/or friend caregiver of a person living with dementia?â = Yes Question 7: What is your employment status? â¢ Employed full-time â¢ Employed part-time â¢ Unemployed â¢ Retired â¢ Prefer not to say Display This Question: If âare a current family and/or friend caregiver of a person living with dementia?â = Yes Question 8: Would your location be considered? â¢ Urban (population >10,000) â¢ Rural (population < 10,000) â¢ Remote Display This Question: If âare a current family and/or friend caregiver of a person living with dementia?â = Yes Question 9: Do you have children under your care living in your home? â¢ Yes â¢ No â¢ Other (e.g., part-time, weekends) Display This Question: If âare a current family and/or friend caregiver of a person living with dementia?â = Yes Question 10: What is your relationship to your care-recipient? â¢ They are your parent â¢ They are your sibling â¢ They are your child â¢ They are your friend â¢ They are your neighbor â¢ They are your spouse â¢ Other Display This Question: If âare a current family and/or friend caregiver of a person living with dementia?â = Yes Question 11: How long have you been in your caregiving role? â¢ Less than 1 year â¢ 1 - 5 years â¢ 6 - 10 years 199 â¢ 11 - 15 years â¢ > 15 years C4. E-Delphi First Questionnaire Question 1: Please indicate how important it is to have someone (e.g., a trained volunteer) assist caregivers in making connections to develop/strengthen relationships with the following individuals/groups. Have someone to help develop/strengthen relationships with... Not at all Important (1) Slightly Important (2) Moderately Important (3) Very Important (4) Extremely Important (5) Other caregivers o o o o o Their care-recipient o o o o o Their family members o o o o o Their friends o o o o o Their wider social circle (e.g., employer, children's teacher) o o o o o Their healthcare providers o o o o o Question 1: What additional needs do caregivers have that relate to developing and strengthening relationships? ________________________________________________________________ 200 End of Block: Connecting Through Supportive Relationships Start of Block: Physical and Emotional Health Question 2: Please indicate how important it is to have someone (e.g., a trained volunteer) assist caregivers in meeting the following personal physical and emotional health needs. Have someone to... Not at all Important (1) Slightly Important (2) Moderately Important (3) Very Important (4) Extremely Important (5) Engage in enjoyable activities with o o o o o Listen to their experiences and concerns o o o o o Help identify their physical health needs o o o o o Help identify their emotional health needs o o o o o Help identify resources to support their physical health needs o o o o o Help identify resources to support their emotional health needs o o o o o Help to stay and/or become physically active o o o o o 201 Provide support with experiencing grief o o o o o Help to access resources to manage chronic health conditions (e.g., depression, anxiety, heart conditions) o o o o o Question 2: What additional needs do caregivers have that relate to physical and emotional health? ________________________________________________________________ End of Block: Physical and Emotional Health Start of Block: Practical Help Question 3: Please indicate how important it is to have someone (e.g. a trained volunteer) assist caregivers with finding help to meet the following practical needs. Have help finding someone who will assist with... Not at all Important (1) Slightly Important (2) Moderately Important (3) Very Important (4) Extremely Important (5) Making adaptations to caregivers' homes to accommodate their care recipient o o o o o 202 Doing home maintenance o o o o o Cooking o o o o o Cleaning o o o o o Completing yard work o o o o o Shopping and errands o o o o o Completing paperwork and applications for support services o o o o o Question 3: What additional needs do caregivers have that relate to meeting their personal needs? ________________________________________________________________ End of Block: Practical Help Start of Block: Finding and Gaining Access to Care-Related Resources Question 4: Please indicate how important it is to have someone (e.g., a trained volunteer) assist caregivers with finding and accessing the following care-related resources. Have someone to help find and access... Not at all Important (1) Slightly Important (2) Moderately Important (3) Very Important (4) Extremely Important (5) Programs that support their needs (e.g., respite, support groups, o o o o o 203 financial assistance) Health assessments for their care-recipients (e.g., cognition assessments if their condition seems to be worsening) o o o o o Consistent and coordinated support from healthcare providers (e.g., from the dementia diagnosis onwards) o o o o o After hour programs (e.g., someone to call for support, someone to come over to help with care outside of regular work hours) o o o o o Tailored programs that are specific to their care-recipient's needs o o o o o Comprehensive local o o o o o 204 support agencies (e.g., Alzheimer's Society) Question 4: What additional needs do caregivers have that relate to finding and accessing care related resources? ________________________________________________________________ End of Block: Finding and Gaining Access to Care-Related Resources Start of Block: Information Question 5: Please indicate how important it is to have someone (e.g., a trained volunteer) assist caregivers in accessing information about the following topics. Someone to help access information about... Not at all Important (1) Slightly Important (2) Moderately Important (3) Very Important (4) Extremely Important (5) Dementia (e.g., risk factors, symptoms, what to expect throughout the disease trajectory, treatment) o o o o o Engaging in conversations about dementia (e.g., telling their social and professional networks o o o o o 205 about the dementia diagnosis) Strategies to manage their care recipients' health (e.g., physical and psychological) o o o o o Helping their care-recipient to have independence o o o o o Supporting their care-recipient with personal care tasks o o o o o Making physical adaptations to their care-recipients' living environment (e.g., door chimes, removing dangers that may increase their risk of injury) o o o o o Financial resources and support (e.g., government funding, caregiver tax benefits, subsidized care) o o o o o 206 Question 5: What additional needs do caregivers have that relate to accessing information about different aspects of caregiving? ________________________________________________________________ End of Block: Information Start of Block: Healthcare Support Question 6: Please indicate how important it is to have someone (e.g., a trained volunteer) assist caregivers in meeting their healthcare related needs (for themselves and/or their care-recipient). Someone to help with... Not at all Important (1) Slightly Important (2) Moderately Important (3) Very Important (4) Extremely Important (5) Talking to healthcare providers o o o o o Identifying providers that can help them o o o o o Booking and scheduling appointments o o o o o Finding health region specific resources o o o o o Informing healthcare providers about their specific circumstances and needs o o o o o 207 Filling out healthcare paperwork o o o o o C5. E-Delphi Second Questionnaire Start of Block: Instructions Instructions This questionnaire features a list of categorized needs statements. Each need included in this list was deemed important through consensus in the first questionnaire. Now that we know what needs are important for volunteers to consider as they are working with caregivers, we need to determine what competencies volunteers need to have in order to meet those needs. A competency is a set of demonstrable characteristics and skills that enable a volunteer navigator to perform their role. An example of a competency is advocating for a patient and/or family. In order for the volunteer navigator to know how to advocate, they need to have specific knowledge, skills and abilities. What you need to do.... For each competency area indicated (e.g., relationships), please provide the knowledge, skills and abilities volunteers need to do their role well. End of Block: Instructions Start of Block: Relationships Question 1 1. It is important to have someone (e.g., a trained volunteer) assist caregivers in making connections to develop/strengthen ........ A. Relationships with other caregivers. B. Relationships with their care-recipient. C. Relationships with their family members. D. Relationships with their friends. E. Relationships with their wider social circle (e.g., employer, colleague, childrenâs teacher, school counsellor, neighbor). F. Relationships with their healthcare providers. 2. It is important to have someone (e.g., a trained volunteer) assist caregivers in identifying and negotiating stigma associated with dementia caregiving. 208 Please provide the necessary knowledge, skills and abilities a volunteer navigator should have in order to meet these various relationship needs. ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ End of Block: Relationships Start of Block: Personal Physical and Emotional Health Needs Question 2 1. It is important that caregivers have someone (e.g., a trained volunteer) to ....... A. Engage in enjoyable activities with. B. Listen to their experiences and concerns. C. Help identify their physical health needs. D. Help identify resources to support their physical health needs. E. Help identify their emotional health needs. F. Help identify resources to support their emotional health needs (e.g. grief, sadness). G. Help to stay and/or become physically active. H. Provide support with experiencing grief. I. Help access resources to manage chronic health conditions (e.g., depression, anxiety, heart conditions). J. Encourage the communication of personal and emotional needs. Please provide the necessary knowledge, skills and abilities a volunteer navigator should have in order to meet these various personal physical and emotional health needs. ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ 209 End of Block: Personal Physical and Emotional Health Needs Start of Block: Caregiversâ Personal Needs Question 3 1. It is important to have someone (e.g., a trained volunteer) assist caregivers with finding help to....... A. Make adaptations to their homes to accommodate their care recipient. B. Do home maintenance. C. Cook. D. Clean. E. Complete yard work. F. Shop and do errands. G. Complete paperwork and applications for support services. Please provide the necessary knowledge, skills and abilities a volunteer navigator should have in order to meet caregivers' various personal needs. ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ End of Block: Caregiversâ Personal Needs Start of Block: Finding and Accessing Care-Related Resources Question 4 1. It is important to have someone (e.g., a trained volunteer) assist caregivers with finding and accessing........ A. Programs that support their needs (e.g., health authority services, support groups, financial assistance for services such as cooking/cleaning/yard services). B. Health assessments for their care-recipients (e.g., cognitive assessments if their condition seems to be worsening, occupational therapist assessments for the physical environment). C. Consistent and coordinated support from healthcare providers (e.g., from the dementia diagnosis onwards). D. After hour programs (e.g., someone to call for support, someone to come over to help with 210 care outside of regular work hours). E. Tailored programs that are specific to their care-recipientâs needs. F. Comprehensive local support agencies (e.g., Alzheimerâs Society). G. A document outlining the necessary personal information about the care-recipient that is required to advocate on their behalf in a variety of ways (e.g., SIN, ID number, account numbers, passwords, pension plan, doctor information etc.). H. Respite services. Please provide the necessary knowledge, skills and abilities a volunteer navigator should have in order to meet these various needs of finding and accessing care-related resources. ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ End of Block: Finding and Accessing Care-Related Resources Start of Block: Accessing Information Question 5 1. It is important to have someone (e.g., a trained volunteer) assist caregivers with accessing information about .......... A. Dementia (e.g., risk factors, symptoms, what to expect throughout the disease trajectory, treatment). B. Engaging in conversations about dementia (e.g., telling their social and professional networks about the dementia diagnosis). C. Strategies to manage their care recipientsâ health (e.g., physical and emotional). D. Helping their care-recipient to have independence. E. Supporting their care-recipient with personal care tasks. F. Making physical adaptations to their care-recipientsâ living environment (e.g., door chimes, removing dangers that may increase their risk of injury). G. Financial resources and support (e.g., government funding, caregiver tax benefits, subsidized care). H. How to improve their skills in computers to improve their access to information (e.g., computer skills training, digital competencies, telephone competencies for virtual appointments, tracking the care-recipients' symptoms). 211 Please provide the necessary knowledge, skills and abilities a volunteer navigator should have in order to meet these various needs for accessing information. ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ End of Block: Accessing Information Start of Block: Meeting Healthcare Related Needs (caregiver and/or care-recipient) Question 6 1. It is important to have someone (e.g., a trained volunteer) assist caregivers with meeting their healthcare related needs by........ A. Talking to healthcare providers. B. Identifying providers that can help them. C. Booking and scheduling appointments. D. Finding health region specific resources. E. Informing healthcare providers about their specific circumstances and needs. F. Filling out healthcare paperwork. Please provide the necessary knowledge, skills and abilities a volunteer navigator should have in order to meet caregivers' and/or care recipients' various healthcare related needs. ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ End of Block: Meeting Healthcare Related Needs (caregiver and/or care-recipient) 212 C6. E-Delphi Third Questionnaire Start of Block: Block 1 Thank you for agreeing to complete the final questionnaire of this study. This questionnaire consists of 8 sections and should take approximately 10 minutes to complete. The first 7 sections outline competencies that will be used to guide the training of volunteer navigators to prepare them to meet the needs of caregivers. Your feedback will be used to determine which competencies should be included and/or excluded from the volunteer training. These competencies were developed based on your insightful feedback to the second questionnaire. For each competency statement, you will be asked to rank the appropriateness of including each competency in the volunteer training. Ranking is based on a 5 point scale that ranges from "not at all appropriate" to "extremely appropriate". The final section is an open ended question that is intended to gather information on effective resources to support caregivers. The responses will be used to develop a comprehensive list of community, provincial and national resources that caregivers can access. o I am ready to start the questionnaire (1) End of Block: Block 1 Start of Block: Default Question Block Question 1: Volunteer Relational Skills Not at all appropriate (1) Slightly appropriate (2) Moderately appropriate (3) Very appropriate (4) Extremely appropriate (5) Communicate effectively with caregivers and care-recipients o o o o o Assess caregivers' and care-recipients' physical, social and emotional needs o o o o o 213 Determine caregivers' preferred ways of communication o o o o o Support caregivers while being open, empathetic, compassionate and non-judgmental o o o o o Develop positive conversations about aging and memory loss o o o o o Understand ethical volunteer/client relationships including prioritizing confidentiality o o o o o Page Break Question 2: Supporting Caregiver Well-Being Not at all appropriate (1) Slightly appropriate (2) Moderately appropriate (3) Very appropriate (4) Extremely appropriate (5) Determine how to support caregivers in establishing and o o o o o 214 maintaining social connections Identify creative ways to provide adequate support to caregivers o o o o o Identify the "big picture" issues and be able to prioritize needs/tasks o o o o o Identify common emotional experiences caregivers may be encountering and when to assist caregivers in accessing professional help o o o o o Build capacity in supporting caregivers and care-recipients with grief, vulnerability, depression and anxiety o o o o o Assist caregivers in learning and engaging in o o o o o 215 self-advocacy Assist caregivers with utilizing technology (e.g., computer searches) o o o o o Assist caregivers in communicating about grief and burnout o o o o o Assist caregivers in self-assessing their personal health and well-being o o o o o Assist caregivers in determining their willingness to accept support from different resources and their preferred way to engage with and/or access these resources (e.g., a caregiver may prefer online support, a caregiver o o o o o 216 may not want support from a specific organization) Identify respite options and ways to assist caregivers in accessing them o o o o o Page Break Question 3: Supporting the Caregiver and Care-Recipient Dyad Not at all appropriate (1) Slightly appropriate (2) Moderately appropriate (3) Very appropriate (4) Extremely appropriate (5) Determine what is meaningful to the caregiver and care-recipient dyad o o o o o Determine the best way to build a relationship with the caregiver and care-recipient dyad (e.g., what kind of communication works best, how they like to interact with healthcare providers) o o o o o 217 Assess and assist caregivers in determining what relationships may need strengthening (e.g., with extended family members, with healthcare providers, between the caregiver and care-recipient) o o o o o Assist caregivers in navigating conflict with the care-recipient and/or family members o o o o o Advocate to meet the dyad's needs o o o o o Assist caregivers in determining quality-of-life concerns for themselves and their care-recipient o o o o o Page Break 218 Question 4: Identifying and Assisting with Accessing Healthcare Services Not at all appropriate (1) Slightly appropriate (2) Moderately appropriate (3) Very appropriate (4) Extremely appropriate (5) Know caregiver and dementia support services available in the community and online (e.g., identifying beneficial resources at the community, provincial and national level) o o o o o Identify how the healthcare system functions (especially regarding dementia related services) and assist caregivers in developing their understanding o o o o o Identify services and assist caregivers in accessing o o o o o 219 them (e.g., completing paperwork and required forms, accessing financial resources and supports) Assist caregivers in overcoming barriers to accessing various services o o o o o Assist caregivers with planning access to services they may need in the future o o o o o Assist caregivers in tracking relevant healthcare information regarding their care-recipient o o o o o Page Break Question 5: Knowledge of Dementia Not at all appropriate (1) Slightly appropriate (2) Moderately appropriate (3) Very appropriate (4) Extremely appropriate (5) 220 Provide strategies and support for engaging in challenging conversations about dementia (e.g., advanced care planning, changing abilities) o o o o o Communicate information about dementia with caregivers and their social networks (e.g., help to explain what dementia is and/or what the disease trajectory entails to members of the caregivers' social network) o o o o o Identify credible sources of information related to dementia and various associated health conditions o o o o o 221 Assist caregivers in accessing information about dementia o o o o o Assist caregivers in contacting providers who can inform them about dementia o o o o o Assist caregivers in coping with symptoms of dementia and challenges associated with disease progression o o o o o Page Break Question 6: Knowledge of Dementia (Stigma) Not at all appropriate (1) Slightly appropriate (2) Moderately appropriate (3) Very appropriate (4) Extremely appropriate (5) Identify personal biases related to dementia o o o o o Assess how stigma is encountered by caregivers and the care-recipients o o o o o 222 Assist in the co-development of a plan to negotiate and respond to experiences related to stigma o o o o o Page Break Question 7: Support for Volunteers Not at all appropriate (1) Slightly appropriate (2) Moderately appropriate (3) Very appropriate (4) Extremely appropriate (5) Build capacity to reflect on your experiences o o o o o Determine how to practice self-care and self-compassion while in a volunteer role o o o o o Build capacity in setting boundaries between yourself and the caregiver o o o o o Page Break 223 Question 8 As part of our efforts to support caregivers it is essential for volunteers to know and understand of the resources that are available at the community, provincial, and national level. Please provide suggestions on programs and/or resources that have been beneficial to you in the past. ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ End of Block: Default Question Block C7. Pilot Feasibility Study Caregiver Recruitment Script Are you currently the primary caregiver of a family member with dementia in the home? If so, we would like to speak with you about participating in our study. With a contribution from Health Canada, we are a team of researchers who have developed an adapted volunteer navigation service for caregivers of persons with dementia and we want to evaluate the feasibility of our program. In order to understand the feasibility of implementing Nav-CARE, we will be conducting a 6-month pilot where volunteers will provide a variety of services to caregivers of persons with dementia for 1-2 hours every second week. As a caregiver, you will have the opportunity to share your perspective on the program with the research team through individual interviews and questionnaires. If you want to learn more, or can help us by participating in this study, please contact the primary contact, Madison Huggins, via email at madisonl.huggins@ubc.ca. Please do not respond publicly as your confidentiality will not be preserved. C8. Pilot Feasibility Study Caregiver Information Sheet Dear Caregiver Nav-CARE Participant, Thank you for agreeing to participate in our study and helping us to evaluate the new Nav-CARE program supporting caregivers of persons living with dementia. By now you have already reviewed the consent form and are familiar with the study. However, below is a summary of what the study will entail in case you need a quick reference. 224 Timeline 1) The study will take place over a 6-month time period 2) You will be visited by a trained volunteer navigator bi-weekly for approximately 1-2 hours 3) You will participate in various data collection tasks throughout the study Data Collection 1) You will participate in a semi-structured interview at midpoint (3-months) and endpoint (6-months) 2) You will complete a survey at midpoint (3-months) and endpoint (6-months) 3) All of your forms will be provided to you in hard or electronic copy by the research team 4) A member of the research team will reach out to you via email or telephone to schedule your interviews and surveys Sharing Findings 1) At the end of the study, the findings will be shared with you in a summary report. The research team will also host a virtual drop-in session where findings can be shared and discussed C9. Pilot Feasibility Study Volunteer Navigator Recruitment Script Have you been a Nav-CARE volunteer with the Hospice Society of Camrose and District for the past year? Are you a mature adult (40 or older)? Would you be willing to take a 3 -hour in-person navigation training on working with care-partners of persons living with dementia, and devote 6 months of 1-2 hours per week to volunteering? If so, we would like to speak with you about participating in our study. In partnership with Health Canada, the University of Alberta and the University of British Columbia, we are a team of researchers who have developed an adapted Nav-CARE program to support care-partners of persons living with dementia. We will be conducting a 6-month pilot feasibility study in which volunteers will provide a variety of services to care-partners of persons living with dementia for 1-2 hours every second week. By piloting this program, we will gain insight regarding the feasibility of the program and what adaptations need to be made to best support care-partners. As a volunteer, you will have the opportunity to provide your perspective on the program to the research team by participating in two one-on-one telephone audio-recorded interviews. If you want to learn more, or can help us by participating in this study, please contact Madison Huggins via email at madisonl.huggins@ubc.ca. Please do not respond publicly as your confidentiality will not be preserved. 225 C10. Pilot Feasibility Study Volunteer Navigator Information Sheet Dear Volunteer Nav-CARE Navigator, Thank you for agreeing to participate in our study to help us evaluate the Nav-CARE program supporting caregivers of persons living with dementia. By now you have already reviewed the consent form and are familiar with the study. However, below is a summary of what the study will entail in case you need a quick reference. Timeline 1) The study will take place over a 6-month time period 2) You will visit caregivers bi-weekly for approximately 1-2 hours 3) You will participate in various data collection tasks throughout the study Data Collection 1) You will participate in a semi-structured interview at midpoint (3-months) and endpoint (6-months) 2) You will complete a survey at midpoint (3-months) and endpoint (6-months) 3) You will keep visit reports after each visit 4) All of your forms will be provided to you in hard or electronic copy by the research team 5) A member of the research team will reach out to you via email or telephone to schedule your interviews and surveys Support 1) Each month, the research team will host a virtual group drop-in session where you can share any challenges you are facing Sharing Findings 1) At the end of the study, the findings will be shared with you in a summary report. The research team will also host a virtual drop-in session where findings can be shared and discussed. C11. Pilot Feasibility Study Caregiver Consent Form Volunteer Navigation in Palliative Care: Adapting Nav-CARE for caregivers of persons living with dementia (Nav-CARE: CPLD) Phase Two: Pilot Feasibility Caregiver Participant Consent Form RESEARCH STUDY In order to understand the feasibility of an adapted Nav-CARE (Navigation: Connecting, Advocating, Resourcing and Engaging) program for caregivers of persons living with dementia, an understanding of the issues related to implementation, practicality, and acceptability are 226 essential. Therefore, our research team will conduct a pilot feasibility study in which volunteers will provide navigation services to caregivers of persons living with dementia for 6 months, for 1-2 hour visits every second week. Volunteers will also write visit reports about each visit. The intervention will be evaluated using semi-structured telephone interviews with both volunteers and family caregiver participants. The Canadian healthcare system is facing one of its greatest challenges with the highest number of ageing citizens in history. Aging adults often struggle with several serious health conditions, including dementia. Dementia has a significant impact on caregivers. Although there are services in place to support caregivers of persons living with dementia, they have a higher level of unmet needs, and lower utilization rates of available services in comparison to caregivers of individuals with other chronic diseases. Nav-CARE is an intervention that assists clients with present and future decision making, provides a surrogate social safety net, and supports the individual to engage with life, and transform their experience of living with life limiting illness. This program does not currently provide navigation services for caregivers of persons living with dementia. Therefore, this study will examine how and if Nav-CARE can be adapted into a successful program for caregivers of persons living with dementia. Health Canada has recognized the need to adequately support caregivers and as a result, requested an adaptation to the Nav-CARE program. Further, this study is being conducted, in part, to satisfy the requirements for the completion of Madison Hugginsâs PhD. PRINCIPAL INVESTIGATORS âª Barbara Pesut, UBC Okanagan, School of Nursing, 1-250-807-9955, barb.pesut@ubc.ca CO-INVESTIGATORS âª Kathy Rush, UBC Okanagan, School of Nursing, Kathy.rush@ubc.ca âª Caitlin McArthur, Dalhousie University, School of Physiotherapy, caitlin.mcarthur@dal.ca âª Madison Huggins, PhD Student, UBC Okanagan, School of Nursing, madisonl.huggins@ubc.ca âª Wendy Duggleby, Professor Emerita, University of Alberta, Faculty of Nursing, wduggleb@ualberta.ca PRIMARY CONTACT âª Madison Huggins, PhD Student, UBC Okanagan, School of Nursing, madisonl.huggins@ubc.ca WHO IS FUNDING THE STUDY? The study is being funded by Health Canada. The study team have no conflict of interest to report. WHAT IS YOUR COMMITMENT? You will be asked to help assess whether the Nav-CARE program is useful to you as a family caregiver of a person with dementia. You will be asked to complete a demographic form that will 227 ask you your age, sex etc. You will then meet with a trained volunteer for 1-2 hours every second week for a 6-month period. These visits will be conducted via telephone or in person. You will also be asked to participate in a telephone interview 3 months into the intervention and at the end of the intervention period. In this interview, you will be asked questions about your experiences with the volunteer. This interview will be approximately one hour in duration and will be audio recorded. You will also complete a short survey 3 months into the study period and at the end. Your total time commitment over 6 months will be approximately 24 hours and will consist of approximately 21 hours of visits and 3 hours of interviews. HOW WILL STUDY FINDINGS BE SHARED? Individual findings will be not shared. The main study findings will be published in academic journals that are freely available and shared at conferences and through online events. Lessons learned from the study will be shared through a variety of resources targeting decision makers, and healthcare leaders. As a participant, you will be provided with links to all resources. This study is being conducted, in part, to fulfill the requirements of a PhD dissertation. Therefore, all dissertation documents relating to this study will be publicly available online through ciRcle. WHAT ARE THE STUDY BENEFITS AND RISKS? There may be no direct benefit to you from participating in this study. However, you may benefit from direct support from a volunteer. Further, previous implementation of Nav-CARE with a different population indicated many benefits. Participants found that the volunteers improved their decision-making, social support, and access to resources. The risk for you may be that you will not find the intervention satisfying or useful. You will have the option to withdraw from the study at any time- just let the researcher or volunteer navigator know You can request that your data be withdrawn as well, but not after the final interview. You can be contacted by a Nav-CARE volunteer via telephone or in person. If you wish to be visited in person by a Nav-CARE volunteer, the Hospice Society Camrose and District COVID-19 protocols and the University of British Columbia COVID-19 protocols will be used to decrease your risk of getting COVID-19. These include masking at all times during the visit and physical distancing. All other contact during the study will be via telephone. All interviews will be conducted via telephone. HOW WILL YOUR CONFIDENTIALITY BE MAINTAINED? Your confidentiality will be respected. Information that discloses who you are will not be released without your consent unless required by law. Your name, or any information that could identify you, will not be used in any reports of the completed study. When you participate in this study you are given a study number and this number is used, rather than your name. The list that matches your name to the study number is kept in a locked filing cabinet and on a computer that is protected by a password and encrypted. This linkage key will be destroyed at the first available opportunity. This will occur during the data lock stage once data analysis begins. You can withdraw your data from the study one month following your final interview as that is when data 228 analysis will begin. Quotes from your interview may be used in study reports, with your permission, but your confidentiality will be protected. Details may be altered to ensure that you cannot be identified by readers. Audio files of the interviews will be downloaded and password protected to a secure UBC computer immediately following the interview, then deleted from the voice recorder. These audio-files will be kept in a secure password protected computer for a minimum of 5 years. A transcriptionist, who has signed a confidentiality agreement, will have access to the data to transcribe interviews. The audio recording will be deleted from the transcriptionistsâ files immediately after transcription. Data from this study will be stored in the Principal Investigators office on password protected, encrypted computers. Data may be used to answer a different research question in future. Ethical approval will be obtained before this data is used to answer a different question. The data will be kept for a minimum of 10 years after publication and then paper copies will be securely shredded and electronic data deleted from the devices/server. At any point in the study, if you reveal that there has been an incident that involves abuse and/or neglect of a child or an elderly person (or that there is a risk of such occurring) please be advised that the researcher must, by law, report this information to the appropriate authorities. PAYMENT You will receive a $100 honorarium in the form of a visa gift card for participating in this study at the beginning of the study, even if you withdraw from the study WHO DO YOU CONTACT IF YOU HAVE QUESTIONS ABOUT THE STUDY? If you have any questions or concerns about what we are asking of you, please contact the PI or Madison Huggins, who is the primary contact for this study. Their names and contact information are listed at the top of the first page of this form. WHO DO YOU CONTACT IF YOU HAVE COMPLAINTS OR CONCERNS ABOUT THE STUDY? If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact any of the following: â¢ The Research Participant Complaint Line in the UBC Office of Research Ethics toll free at 1-877-822-8598 or the UBC Okanagan Research Services Office at 250-807-8832. It is also possible to contact the Research Complaint Line by email (RSIL@ors.ubc.ca). Please reference the study number H21-00067 when calling so the Complaint Line staff can better assist you. â¢ University of Alberta Health Research Ethics Board atreoffice@ualberta.ca. This office has no affiliation with the study investigators. PARTICIPANT CONSENT AND SIGNATURE Taking part in this study is entirely up to you. You have the right to refuse to participate in this study. If you decide to take part, you may choose to pull out of the study at any time, 229 and the data you have provided deleted, without giving a reason. Your signature below indicates that you have received a copy of this consent form for your own records. Your signature indicates that you consent to participate in this study. I agree to participate in this study. Participant Signature Date Printed Name of the Participant signing above Please check one: â¡ Yes, I agree to participate in the pilot feasibility study â¡ No, I do not want to participate in the pilot feasibility study Please check one: â¡ Yes, I agree to have my interviews audio-recorded â¡ No, I do not want to have my interviews audio-recorded Please check one: â¡ Yes, I agree to have quotes of my interview shared and published as long as I remain anonymous. â¡ No, I do not want to have my interviews excerpts shared or published. Please check one: â¡ Yes, I would like to receive email updates of study findings. â¡ No, I do not want to receive email updates of study findings. Contact Information: Please provide a personal email and/or telephone number Participant Telephone Number: _____________________ Email Address: _____________________ Participant Address if you would like to receive a hard copy of the study findings: 230 C12. Pilot Feasibility Study Volunteer Navigator Consent Form Volunteer Navigation in Palliative Care: Adapting Nav-CARE for caregivers of persons living with dementia (Nav-CARE: CPLD) Phase Two: Pilot Feasibility Volunteer Participant Consent Form RESEARCH STUDY In order to understand the feasibility of an adapted Nav-CARE (Navigation: Connecting, Advocating, Resourcing and Engaging program for caregivers of persons living with dementia, an understanding of the issues related to implementation, practicality, and acceptability are essential. Therefore, our research team will conduct a pilot feasibility study in which volunteers will provide services to caregivers of persons living with dementia for 6 months, for 1-2 hour visits every second week. Volunteers will also write visit reports about each visit. The intervention will be evaluated using semi-structured telephone interviews with both volunteers and family caregiver participants. The Canadian healthcare system is facing one of its greatest challenges with the highest number of ageing citizens in history. Aging adults often struggle with several serious health conditions, including dementia. Dementia has a significant impact on caregivers. Although there are services in place to support caregivers of persons living with dementia, they have a higher level of unmet needs, and lower utilization rates of available services in comparison to caregivers of individuals with other chronic diseases. Nav-CARE is an intervention that assists clients with present and future decision making, provides a surrogate social safety net, and supports the individual to engage with life, and transform their experience of living with life limiting illness. This program does not currently provide navigation services for caregivers of persons living with dementia. Therefore, this study will examine how and if Nav-CARE can be adapted into a successful program for caregivers of persons living with dementia. Health Canada has recognized the need to adequately support caregivers and as a result, requested an adaptation to the Nav-CARE program. Further, this study is being conducted, in part, to satisfy the requirements for the completion of Madison Hugginsâs PhD. PRINCIPAL INVESTIGATORS âª Barbara Pesut, UBC Okanagan, School of Nursing, 1-250-807-9955, barb.pesut@ubc.ca CO-INVESTIGATORS âª Kathy Rush, UBC Okanagan, School of Nursing, Kathy.rush@ubc.ca âª Caitlin McArthur, Dalhousie University, School of Physiotherapy, caitlin.mcarthur@dal.ca âª Madison Huggins, PhD Student, UBC Okanagan, School of Nursing, madisonl.huggins@ubc.ca âª Wendy Duggleby, Professor Emerita, University of Alberta, Faculty of Nursing, wduggleb@ualberta.ca 231 PRIMARY CONTACT âª Madison Huggins, PhD Student, UBC Okanagan, School of Nursing, madisonl.huggins@ubc.ca WHO IS FUNDING THE STUDY? The study is being funded by Health Canada. The study team have no conflict of interest to report. WHAT IS YOUR COMMITMENT? If you agree to take part, you will be asked to participate in assessing the feasibility of the adapted Nav-CARE program for caregivers of persons living with dementia. You will be asked to attend a three hour in person orientation to navigating with caregivers of person living with dementia. At that orientation you will be asked to complete a demographic form with information about your age, sex, years of experience as a volunteer etc. After you will provide volunteer navigation services with an assigned family caregiver for approximately 1-2 hours every second week for 6 months and write visit reports about each visit. These visits will be held via telephone or in person. You will also be asked to participate in a telephone interview 3 months into the intervention and at the end of the intervention period. In this interview, you will be asked questions about your experiences with the family caregiver. This interview will be approximately one hour in duration, will take place over the phone and will be audio recorded. You will also be asked to complete a short survey 3 months into the study period and again at the end of the study. Your total time commitment over 6 months will be 27 hours and will consist of 3 hours of training, approximately 21 hours of visits and approximately 3 hours dedicated to completion of forms. HOW WILL STUDY FINDINGS BE SHARED? Individual findings will not be shared. The main study findings will be published in academic journals that are freely available and shared at conferences and through online events. Lessons learned from the study will be shared through a variety of resources targeting decision makers, and healthcare leaders. As a participant, you will be provided with links to all resources. This study is being conducted in part to fulfill the requirements of a PhD dissertation. Therefore, all dissertation documents relating to this study will be publicly available online through ciRcle. WHAT ARE THE STUDY BENEFITS AND RISKS? There may be no direct benefit to you from participating in this study. However, previous implementation of Nav-CARE with a different population indicated many benefits. Volunteers found the role satisfying and meaningful. Participants found that the volunteers improved their decision-making, social support, and access to resources. The risk for you is that you will not find the intervention satisfying or useful. Further, you will be visiting with a caregiver who may be struggling with a variety of challenges with the dementia 232 journey, and with family relational dynamics. In order to provide you with support, you will have the opportunity to discuss any challenges with your volunteer coordinator and the research team. You will have the option to withdraw from the study at any time. Just let the researcher or volunteer navigator know You can request that your data be withdrawn as well, but not after the final interview. Potential exposure to COVID-19 virus may occur when you are attending the in-person orientation and if you are making in-person home visits with a client. To reduce this risk, at all times COVID-19 protocols of the Hospice Society of Camrose and District and the University of British Columbia will be followed. For example, wearing masks and physical distancing will be required at all times. HOW WILL YOUR CONFIDENTIALITY BE MAINTAINED? Your confidentiality will be respected. Information that discloses who you are will not be released without your consent unless required by law. Your name, or any information that could identify you, will not be used in any reports of the completed study. When you participate in this study you are given a study number and this number is used, rather than your name. The list that matches your name to the study number is kept in a locked filing cabinet and on a computer that is protected by a password and encrypted. This linkage key will be destroyed at the first available opportunity. This will occur during the data lock stage when data analysis begins. You may withdraw your data from the study up to one month after your final interview when data analysis begins. Quotes from your interview may be used in study reports, with your permission, but your confidentiality will be protected. Details may be altered to ensure that you cannot be identified by readers. A transcriptionist, who has signed a confidentiality agreement, will have access to the data to transcribe interviews. The audio recording will be deleted from the transcriptionistsâ files immediately after. Data, including audio-files, from this study will be stored in the Principal Investigators office on password protected, encrypted computers for a minimum of 5 years. Data may be used to answer a different research question in future. Ethical approval will be obtained before this data is used to answer a different question. The data will be kept for a minimum of 10 years after publication and then paper copies will be securely shredded and electronic data deleted from the devices/server. At any point in the study, if you reveal that there has been an incident that involves abuse and/or neglect of a child or an elderly person (or that there is a risk of such occurring) please be advised that the researcher must, by law, report this information to the appropriate authorities. PAYMENT You will receive a $100 honorarium in the form of a Visa Gift card for participating in this study following your training even if you withdraw from the study. WHO DO YOU CONTACT IF YOU HAVE QUESTIONS ABOUT THE STUDY? If you have any questions or concerns about what we are asking of you, please contact the PI or Madison Huggins, who is the primary contact for this study. Their names and contact information are listed at the top of the first page of this form. 233 WHO DO YOU CONTACT IF YOU HAVE COMPLAINTS OR CONCERNS ABOUT THE STUDY? If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact any of the following: â¢ The Research Participant Complaint Line in the UBC Office of Research Ethics toll free at 1-877-822-8598 or the UBC Okanagan Research Services Office at 250-807-8832. It is also possible to contact the Research Complaint Line by email (RSIL@ors.ubc.ca). Please reference the study number H21-00067 when calling so the Complaint Line staff can better assist you. â¢ University of Alberta Health Research Ethics Board atreoffice@ualberta.ca. This office has no affiliation with the study investigators. PARTICIPANT CONSENT AND SIGNATURE Taking part in this study is entirely up to you. You have the right to refuse to participate in this study. If you decide to take part, you may choose to pull out of the study at any time, and the data you have provided deleted, without giving a reason. Your signature below indicates that you have received a copy of this consent form for your own records. Your signature indicates that you consent to participate in this study. I agree to participate in this study. Participant Signature Date Printed Name of the Participant signing above Please check one: â¡ Yes, I agree to participate in the pilot feasibility study â¡ No, I do not want to participate in the pilot feasibility study Please check one: â¡ Yes, I agree to have my interviews audio-recorded â¡ No, I do not want to have my interviews audio-recorded Please check one: â¡ Yes, I agree to have quotes of my interview shared and published as long as I remain anonymous. 234 â¡ No, I do not want to have my interviews excerpts shared or published. Please check one: â¡ Yes, I would like to receive email updates of study findings. â¡ No, I do not want to receive email updates of study findings. Contact Information: Please provide a personal email and/or telephone number Participant Telephone Number: _____________________ Email Address: _____________________ Participant Address if you would like to receive a hard copy of the study findings: C13. Pilot Feasibility Study Volunteer Navigator Experience and Self-Perceived Confidence Questionnaire Start of Block: Survey Introduction Thank you for agreeing to complete this survey. The survey contains 19 questions and should take approximately 5 minutes to complete. The first set of questions are focused on your experience engaging in visits with the caregiver over the last 3 months. For each question, please select only one answer. o I am ready to start the survey (1) End of Block: Survey Introduction Start of Block: Default Question Block Question 1 I was able to perform navigation services without difficulty o Strongly disagree (1) o Disagree (2) o Neutral (3) o Agree (4) o Strongly agree (5) 235 Question 2 I was sure of what I was expected to do as a volunteer navigator o Strongly disagree (1) o Disagree (2) o Neutral (3) o Agree (4) o Strongly agree (5) Question 3 I found I was able to meet with the caregiver when I needed to o Strongly disagree (1) o Disagree (2) o Neutral (3) o Agree (4) o Strongly agree (5) Question 4 I found I was able to meet with the caregiver as frequently as planned o Strongly disagree (1) o Disagree (2) o Neutral (3) o Agree (4) o Strongly agree (5) Question 5 I have been able to complete the navigation activities I wanted to o Strongly disagree (1) o Disagree (2) o Neutral (3) o Agree (4) o Strongly agree (5) Question 6 236 I have had time to carry out the activities I wanted to o Strongly disagree (1) o Disagree (2) o Neutral (3) o Agree (4) o Strongly agree (5) Question 7 Working as a volunteer navigator has contributed to my satisfaction as a volunteer o Strongly disagree (1) o Disagree (2) o Neutral (3) o Agree (4) o Strongly agree (5) Question 8 Working as a volunteer navigator has contributed positively to my personal wellbeing o Strongly disagree (1) o Disagree (2) o Neutral (3) o Agree (4) o Strongly agree (5) Question 9 My efforts as a volunteer navigator have contributed to the caregivers' personal wellbeing o Strongly disagree (1) o Disagree (2) o Neutral (3) o Agree (4) o Strongly agree (5) Question 10 My efforts as a volunteer navigator have contributed to the wellbeing of the care-recipient (person living with dementia) being cared for by the caregiver 237 o Strongly disagree (1) o Disagree (2) o Neutral (3) o Agree (4) o Strongly agree (5) Question 11 I feel capable in my role as a volunteer navigator o Somewhat disagree (1) o Disagree (2) o Neutral (3) o Agree (4) o Strongly agree (5) Question 12 I would recommend being a volunteer navigator to someone else o Strongly disagree (1) o Disagree (2) o Neutral (3) o Agree (4) o Strongly agree (5) Page Break The next set of questions address your confidence in the volunteer navigator role. For each question, please select only one answer. o I am ready for the next set of questions (1) Question 13 How do you rate your ability to understand key words and definitions relevant to dementia caregiving? o Poor (1) o Fair (2) o Good (3) 238 o Very good (4) o Excellent (5) Question 14 How do you rate your ability to assist caregivers in identifying quality-of-life concerns for themselves and the person living with dementia? o Poor (1) o Fair (2) o Good (3) o Very good (4) o Excellent (5) Question 15 How do you rate your ability to identify creative ways to provide support to caregivers to address their own quality-of-life? o Poor (1) o Fair (2) o Good (3) o Very good (4) o Excellent (5) Question 16 How do you rate your ability to identify community and online support services available to caregivers and persons living with dementia and assist caregivers in accessing them? o Poor (1) o Fair (2) o Good (3) o Very good (4) o Excellent (5) Question 17 How do you rate your ability to identify gaps in available resources and navigate alternative options? 239 o Poor (1) o Fair (2) o Good (3) o Very good (4) o Excellent (5) Question 18 How do you rate your ability to communicate effectively with caregivers? o Poor (1) o Fair (2) o Good (3) o Very good (4) o Excellent (5) Question 19 How do you rate your ability to communicate effectively with the person living with dementia? (If you have engaged in visits with the caregiver when the person living with dementia is present) o Poor (1) o Fair (2) o Good (3) o Very good (4) o Excellent (5) o I have not engaged in visits when the person living with dementia is present (6) Question 20 How do you rate your ability to communicate effectively with the care-dyad? (if you have engaged in visits with the caregiver when the person living with dementia is present) o Poor (1) o Fair (2) o Good (3) o Very good (4) o Excellent (5) o I have not engaged in visits when the person living with dementia is present (6) 240 Question 21 How do you rate your ability to provide strategies and support for engaging in challenging conversations about dementia? o Poor (1) o Fair (2) o Good (3) o Very good (4) o Excellent (5) C14. Pilot Feasibility Study Volunteer Navigator Visit Reports Visit Report How was your visit conducted? a. Over the phone b. In person c. Over zoom d. Other (please specify) ________________ If your visit was conducted in person, what was the travel time to the caregiversâ home? ___________________________________________ Who was present during your visit? ___________________________________________ Navigator Log 241 Was there anything that went particularly well with this visit? ____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ What challenges did you encounter, if any? ____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ Were there any barriers to fulfilling the navigator role? 242 ____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ Were there needs you identified for which there were no resources to meet those needs? ____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ Did you learn anything new about navigation through this visit? ____________________________________________________________________________________________________________________________________________________________________________________________________________________________________243 ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ Service Description What navigation services did you provide during this visit? ____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ Were there any issues reported to you by the caregiver? ____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________244 ________________________________________________________________________________________________________________________________________________________ If so, what kind of activities did you complete to address these issues? ____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ Were any follow up plans made? ____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ 245 C15. Pilot Feasibility Study Volunteer Navigator Midpoint Interview Guide 1.Why did you decided to become a volunteer navigator? 2. What is your background? (Probe for training; professional background, healthcare) 3.Can you begin by telling us generally about your experiences as a volunteer navigator? What was doing this role like for you? 4.What did you like most about your Nav-CARE volunteer work? 5.What did you like least about your Nav-CARE volunteer work? 6.Can you think of any particular barriers or challenges that you encountered in your work as a volunteer navigator? 7.What do you feel are the most significant contributions your navigator work has made to older adults in the community? To their caregivers? Give specific examples if you can. 8.What kinds of recommendations would you have for other communities who would like to try this model of navigator services? 9.What things did you find you were doing that you hadnât thought you would be doing? 10.How about the types of things you thought you would be doing, but you did not do? 11.Was there anything that you wish you were able to support the caregiver with but you were unable to? (Is this something that additional training could have helped you with? Is this something that you would need more ongoing support with?) 12.In addition to the time spent visiting clients, how much time did you spend outside of direct visits, e.g., finding resources in the community (this question excludes time spent on the research process such as filling out research paperwork)? 13.Will you continue to visit your assigned clients? If this program is made available through your volunteer organization will you continue on in the role? Would you recommend the role to other volunteers? Please explain? 14.What recommendations would you make for enhancing/changing the program? 15.As you think about sustaining this program within non-profit societies, what kinds of things do we need to think about? C16. Pilot Feasibility Study Volunteer Navigator Endpoint Interview Guide 1. Tell me a bit about how the last half of the visits went and what support you really gave during that time 2. What was your biggest contribution 3. What was the biggest challenges 246 4. Navigating family dynamics (e.g., the specific situations and knowledge, how to support caregiver with challenging questions and conversations, how to set boundaries)? 5. More on listening, what this really looks like (e.g., listening skills wanted)? 6. Did you feel prepared for the role? (e.g., was there something else you needed to know to do the role) 7. What kinds of supports would you like to see continue for volunteer navigators? 8. What specific knowledge of dementia for the particular situation that you were supporting would have helped you to have? (I.e., rather than just blanket knowledge of dementia) 9. Was this meaningful to you? 10. Will you continue to visit? C17. Pilot Feasibility Study Caregiver Midpoint Interview Guide 1. Can you begin by telling me why you chose to have a volunteer navigator and be part of this research? (Prompts, what kinds of things were you feeling you could use support with? How did you think Nav-CARE could assist you?) 2. What did the process look like for getting set up with the program (e.g., did Joy contact you, did you find this was pretty seamless? What could have been different to make it a bit better for you?) 3. Was there a time when the navigator really helped you? What might you have done in this situation if you did not have a navigator? 4. Did the navigator help you in any way with daily responsibilities related to your family member/ care-recipient? If so, how? 5. Did the navigator in any way help you to get more time for yourself? If so, how? 6. Did the navigator assist you with things you might not have known? What would those be? 7. When you think about the quality of your life, has having a navigator improved or diminished that quality of life? Can you explain? 8. When you think about the beginning of your caregiving journey, would having a volunteer navigator supporting you right from the beginning have been helpful? In what ways? (e.g., what could the volunteer have helped you navigate? Whether this is quality of life components or specific things like completing paperwork for caregiving related tasks.) 247 9. When looking ahead, how do you see the volunteer navigator being able to support you throughout the caregiving journey? (e.g., existentially as you will always be a caregiver in many ways, supporting you through grief and loss, helping you to access different supports) 10. What about the negatives? Are there things that you would like to have done differently? If yes, what things would you change? 11. Are there any additional things that you would like the navigator to do that would be helpful? 12. Are there any things that the navigator did that were not helpful to you? 13. What would you change, if anything, about the navigation program? 14. Is there a memory that stands out for you about having a navigator? What was that memory? 15. Overall, how important has this program been to you? (e.g., has it impacted you positively in ways that you may not have been able to be impacted by other supports?) 16. What has your experience been with support groups? (e.g., have you accessed them? What has been helpful with them? What has been more challenging?) - probe about getting a group together physically to create a sense of community 17. If there was a support group that was offered with this program, what would you want to see in it? C18. Pilot Feasibility Study Caregiver Endpoint Interview Guide 1. Tell me a bit about how the last half of the visits went 2. What was the biggest contribution you felt visiting with the volunteer navigator had for you? 3. What were the biggest challenges you encountered? Could they have been addressed by something the volunteer navigator or Nav-CARE team could have done better? 4. Navigating family dynamics (e.g., the specific situations and knowledge, how to support caregiver with challenging questions and conversations, how to set boundaries)? 5. More on listening, what this really looks like (e.g., was having a volunteer navigator listen to you helpful? What listening skills do you wish the volunteer navigator had?) 6. Did you feel the volunteer navigator was prepared for the role? (e.g., was there something else you think they needed to know to do the role) 7. What kinds of supports would you like to see continue? 248 8. What specific knowledge of dementia for the particular caregiving situation that you are in might have been helpful for the volunteer navigator to know to provide you with better support? (I.e., rather than just blanket knowledge of dementia) 9. Was this meaningful to you? How could it have been improved? 10. Will you continue to visit? C19. Consolidated Criteria for Reporting Qualitative Research (COREQ) Checklist
Thesis/Dissertation
eng
Nursing
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Pesut, Barbara
Volunteer navigation in dementia care : adapting Nav-CARE for caregivers of persons living with dementia
Text