Lunde, Angela

Introduction Clinical Research Coordinators (CRCs) serve as the frontline staff for research participants in studies on frontotemporal degeneration (FTD), directly influencing participant experience. The training adequacy, job satisfaction, and retention of FTD CRCs have not been systematically examined. Methods The Association for Frontotemporal Degeneration (AFTD) administered an anonymous cross-sectional online survey to CRCs affiliated with research networks across the USA and Canada. Results Thirty-seven CRCs responded. Most had more than 3 years of experience, yet 62% reported encountering situations for which they felt inadequately prepared. Information on genetics, symptom management, and brain donation were identified as critical training gaps. Retention was linked to competitive pay and clear career advancement opportunities. Discussion The findings highlight a critical need for formalized, disease-specific onboarding and emotional support systems tailored to CRCs that engage with FTD patients and families. AFTD is developing a modular training curriculum to standardize CRC competency.

Rural populations are underrepresented in cognitive impairment research and have limited resources for education about brain and cognitive health, Alzheimer's disease and related dementias, or caregiving. As our Outreach, Recruitment, and Engagement team aimed to expand activities into more rural communities, we also wanted to better understand the characteristics of the communities surrounding our center and gain insight into the social exposome of the areas. The goal of the manuscript is to reflect on our experience and share measures that were useful in this effort, which can be further enriched and adjusted by other outreach teams.

Background Dementia with Lewy bodies (DLB) is a common degenerative dementia, but no studies investigate bereaved caregiver experiences. Objective To investigate the experiences of caregivers three months after the death of persons with DLB using a mixed-methods approach. Methods Dyads of individuals with moderate-advanced DLB and their primary informal caregivers were followed prospectively every 6 months until the person with DLB died. Caregivers completed a study visit with questionnaires and a semi-structured interview ∼3 months later. Spearman correlation coefficients and Wilcoxon rank-sum tests evaluated the relationships of post-death measures with pre-death patient and caregiver variables. Thematic analysis was used to analyze the interviews. Results Seventy-three caregivers completed visits (mean 3.5 months post-death). Most of the caregivers were women (82.2%) and spouses (76.7%) or adult children (17.8%). Over 40% had scores indicating risk for clinical depression. Post-death caregiver experiences (depression, quality of life, grief, resilience) correlated with pre-death caregiver experiences. Post-death experiences did not associate with patient characteristics, disease-related symptoms, or healthcare services used in the last 6 months of life. Trajectories for caregiver measures from pre- to post-death visits varied widely. Interview themes included grief and sadness, anger, guilt and regret, relief, appreciation/gratitude, and adjusting to a new normal. Conclusions The finding that pre-death caregiving experiences have the strongest association with post-death experiences emphasizes the critical importance of accessible and evidence-based caregiver support before and after the death of a person with DLB. Research is needed to develop interventions for current and bereaved caregivers of individuals with DLB. Trial registration information NCT04829656 (submitted 2021-03-22).

AbstractINTRODUCTIONLittle is known regarding quality of life (QoL) in dementia with Lewy bodies (DLB), particularly in advanced stages.METHODSDyads of individuals with moderate–advanced DLB and their primary caregivers were recruited from specialty clinics, advocacy organizations, and research registries. The study collected demographics, disease‐related measures, and measures of patient/caregiver experiences.RESULTSThe Quality of Life in Alzheimer's Disease (QoL‐AD) was completed by the person with DLB and the caregiver (proxy) in 61 dyads; 85 dyads had only a proxy‐completed QoL‐AD. Patient‐ and proxy‐reported scores were moderately correlated (r = 0.57, P < 0.0001). Worse patient‐reported QoL correlated with daytime sleepiness, autonomic symptom burden, and behavioral symptoms. Proxy ratings correlated with dementia severity, daytime sleepiness, behavioral symptoms, dependence in activities of daily living, and caregiver experience measures.DISCUSSIONPatient‐ and proxy‐reported quality of life (QoL) should be assessed separately in advanced DLB. Some symptoms associated with QoL have available therapeutic options. Research is needed regarding strategies to optimally improve QoL in DLB.Highlights Patient and proxy quality of life (QoL) ratings had moderate correlation in advanced dementia with Lewy bodies. Daytime sleepiness affected patient‐ and proxy‐reported QoL. Behavioral symptoms affected patient‐ and proxy‐reported QoL. Autonomic symptom burden affected patient‐reported QoL. Dementia severity, dependence, and caregiver experiences affected proxy ratings.

Abstract Background Financial management is one of the most cited sources of stress among caregivers. Legal planning presents additional challenges. Only a small percentage of dementia caregivers report successfully completing necessary planning. Further, persons with dementia are vulnerable to fraud, scam, and inappropriate financial transactions. With stakeholder participation, we explored a novel solution using state‐of‐the‐art technology aimed to overcome impediments that have plagued prior legal and financial planning resources. Method 18 stakeholders from 10 organizations across the U.S. serving persons with dementia and caregivers participated in two 60 to 90‐minute semi‐structured interviews that were recorded and transcribed. Qualitative stakeholder input was collected through an iterative process. During initial interviews, a mockup was shared to elicit feedback. There was a 3‐month wait after the first interviews to incorporate recommendations into the evolving prototype. During the second round of interviews, stakeholders evaluated the prototype progress based on feedback they previously provided. Stakeholders then completed an electronic survey to assess their overall confidence in the value of the future tool. A phase 1 prototype was designed using Adobe XD. Stakeholders influenced the content, layout, colors, and images with goals of clarity, usability, legibility, and simplicity. Included are a ‘how the tool works’ section; a wizard that guides users through a topic by asking questions, responding appropriately, a prioritized to‐do list; a chatbot; and a dashboard for viewing progress and sharing with selected care partners. Responses to questions were generated by legal and financial experts. Result All 18 stakeholders confirmed that financial management and legal planning are highly stressful for persons with dementia and their families and that there is a need for a tool of this type. 85% of the stakeholders indicated that were extremely satisfied, or very satisfied that the tool would be a beneficial product. Conclusion Results confirmed the need for and utility of an easy‐to‐use tool assisting in legal and financial planning. Phase 2 will incorporate additional content and features along with further review from legal and financial experts. Persons living with dementia and care partners will be included in the testing, evaluation, and further refinement of the technology tool.

AbstractBackgroundTo gather user input iteratively to develop a matching algorithm for peer‐to‐peer support and to assess the feasibility and usability of a web‐based program to conduct matching.Method32 caregivers of persons with dementia (PwD) participated in semi‐structured focus groups and completed surveys to provide input regarding characteristics deemed valuable in someone they would choose to be connected with for emotional support. Through an iterative process as new information emerged, a web‐based prototype and matching algorithm were developed. Caregivers interacted with the prototype and provided feedback indicating ease of accessibility and use, initial impression, and comfort/satisfaction with profile content.ResultAll 32 caregivers (age 40‐90, education 12/GED‐20, sex 88% female, 31% Black/African‐American) completed online profiles. Of those who interacted with the prototype, 23 completed the feedback survey, on which 87% had no or only mild difficulty accessing the site, 91% had no difficulty with technology once there, 86% had a very or quite positive initial impression, 91% found it very or quite easy to navigate, 87% rated a very or quite high level of comfort with completing the personal profile questions, and 82% felt very or quite confident the questions asked would lead to a good match.ConclusionA large majority of caregivers of PwD demonstrated the web‐based platform was easy to access and navigate, provided a positive experience, and gathered information that would lead to a good supportive relationship with another caregiver. Phase II will optimize the design and algorithm and evaluate the matching process in 350 caregivers.

AbstractBackgroundCaregiving for persons with dementia negatively impacts physical and mental health, including increased risk for chronic loneliness and isolation. This Phase I study aimed to recruit former and current dementia caregivers as engaged partners in the design of a unique, technology‐assisted pairing platform to match caregivers to one another for meaningful connection and support based on characteristics chosen by the caregivers themselves.MethodWe recruited thirty‐two caregivers to participate in two semi‐structured focus groups (audio recorded for qualitative analyses) and complete a survey to understand the characteristics desired in another caregiver for the purpose of emotional support. Participants interacted with a website prototype on their personal device and completed a user experience feedback form. An iterative process was used to design the website and matching questionnaire allowing participants to validate preferences and concerns. Website analytics were captured (e.g. time to answer each question, total time spent on the website).ResultThe efforts culminated in a website ‘look and feel’ that addressed the preferences and criticisms of study participants. Figure 1 shows the home page slider inviting caregivers to join (images 1‐3) and describes the matching process (4); the caregiver answers up to 34 questions to create a profile (5‐7) and the website provides a list of caregivers that best match criteria (8). Overall, 87% of study participants rated a high level of comfort with completing the personal profile questions; 82% felt confident the questions asked would lead to a good match. An algorithm to match caregivers was created using the profile questions which asked participants to self‐select and then rank the characteristics of highest importance. Good and poor matches are scored by the algorithm, with 1 being a “perfect” match (Figure 2). In the current cohort, each participant had at least one match that scored 0.708 or higher.ConclusionOur study established interest in a technology assisted peer‐to‐peer caregiver matching program that is a potential low‐cost, high‐impact resource. The study resulted in a set of matching characteristics and an algorithm prototype within a user influenced website and will be further tested in Phase 2. Research supported from NIA of the NIH.

AbstractBackgroundBlack/African Americans (B/AA) are nearly twice as likely as White/European Americans (W/EA) to have Alzheimer’s or other dementias and are more likely to provide care for persons with dementia (PwD). Evidence indicates that B/AA desire having someone to talk with who understands their caregiving challenges, yet are less likely than W/EA to ask for support. Further, community resources supporting caregivers’ ability to maintain health and well‐being developed with input from B/AA are lacking. We aimed to determine how a technology‐assisted caregiver matching service designed with user input could address diverse caregiver needs.MethodsFor this Phase I project, 32 caregivers of PwD (31% B/AA) participated in semi‐structured focus groups and completed surveys to provide input regarding characteristics deemed valuable in someone they would choose to be connected with for emotional support. Through an iterative process as new information emerged, a web‐based prototype and matching algorithm were developed.ResultsAge and sex distribution were similar between B/AA and W/EA (71 and 68 yrs; 90% and 86%, respectively). W/EA were most likely caring for a spouse/significant other (73%) whereas B/AA were caring for spouse/significant other (30%), a parent (30%;18% W/EA), a sibling (10%; 0% W/EA), or other (30%; 9%W/EA). Level of emotional support was rated “poor” (50% B/AA, 18% W/EA); “average” (0% B/AA, 14% W/EA); “good” (40% B/AA, 41% W/EA); and “excellent” (10%, 27% W/EA). Characteristics B/AA deemed “very important” or “absolutely essential” for a supportive match included living in close proximity, same ethnicity, similar lifestyle, and common values. Alternatively, W/EA selected similar age, living in close proximity, same sex, similar lifestyle, common values and interests, having the same caregiving relationship, and having the same diagnosis in their PwD (see chart).ConclusionIn this cohort, B/AA reported poorer levels of emotional support than W/EA. B/AA were equally likely to be supporting a spouse/significant other as a parent or other acquaintance, whereas W/EA provided support primarily for a spouse/significant other. Characteristics B/AA and W/EA consider important in a supportive caregiver match show important differences that should be considered when optimizing caregiving resources. Phase II will explore further in a much larger sample.