Development and Evaluation of a Clinician-Vetted Dementia Caregiver Resources Website: Mixed Methods Approach.

BACKGROUND: About 11 million Americans are caregivers for the 6.7 million Americans currently living with dementia. They provide over 18 billion hours of unpaid care per year, yet most have no formal dementia education or support. It is extremely difficult for clinicians to keep up with the demand for caregiver education, especially as dementia is neurodegenerative in nature, requiring different information at different stages of the disease process. In this digital age, caregivers often seek dementia information on the internet, but clinicians lack a single, reliable compendium of expert-approved digital resources to provide to dementia caregivers. OBJECTIVE: Our aim was to create a dementia caregiver resources website to serve as a hub for user-friendly, high-quality, and expert-reviewed dementia educational resources that clinicians can easily supply to family caregivers of people with dementia. METHODS: An interdisciplinary website development team (representing dementia experts from occupational therapy, nursing, social work, geriatrics, and neurology) went through 6 iterative steps of website development to ensure resource selection quality and eligibility rigor. Steps included (1) resource collection, (2) creation of eligibility criteria, (3) resource organization by topic, (4) additional content identification, (5) finalize resource selection, and (6) website testing and launch. Website visits were tracked, and a 20-item survey about website usability and utility was sent to Veterans Affairs tele-geriatrics interdisciplinary specialty care groups. RESULTS: Following website development, the dementia caregiver resource website was launched in February 2022. Over the first 9 months, the site averaged 1100 visits per month. The 3 subcategories with the highest number of visits were "general dementia information," "activities of daily living," and "self-care and support." Most (44/45, 98%) respondents agreed or strongly agreed that the website was easy to navigate, and all respondents agreed or strongly agreed that the resources were useful. CONCLUSIONS: The iterative process of creating the dementia caregiver resources website included continuous identification, categorization, and prioritization of resources, followed by clinician feedback on website usability, accessibility, and suggestions for improvement. The website received thousands of visits and positive clinician reviews in its first 9 months. Results demonstrate that an expert-vetted, nationally, and remotely available resource website allows for easy access to dementia education for clinicians to provide for their patients and caregivers. This process of website development can serve as a model for other clinical subspecialty groups seeking to create a comprehensive educational resource for populations who lack easy access to specialty care.

Caregiver Support Role in Occupational Therapy Video Telehealth: A Scoping Review.

Caregiver involvement may facilitate patient participation in occupational therapy (OT) video telehealth. However, little is known about the extent to which caregivers participate and what they do. This scoping review aims to, 1) describe the caregiver role supporting patient participation in OT video telehealth, and, 2) identify barriers and facilitators to caregiver involvement. Findings reveal caregiver involvement in a range of OT evaluation and intervention processes, with details on what caregivers did overall lacking. Barriers and facilitators are also described. This study underscores the need for clear and robust descriptions of caregiver participation to increase best practices in video telehealth.

Poor insight and future thinking in early dementia limit patient projections of potential utility of technological innovations and advanced care planning.

Introduction: Cognitive psychology posits that thinking about the future relies on memory such that those with memory impairment may have trouble imaging their future technology and other needs. Methods: We conducted a content analysis of qualitative data from interviews with six patients with MCI or early dementia regarding potential adaptations to a mobile telepresence robot. Using a matrix analysis approach, we explored perceptions of (1) what technology could help with day-to-day functioning in the present and future and (2) what technology may help people with memory problems or dementia stay home alone safely. Results: Very few participants could identify any technology to assist themselves or other people with memory problems and could not provide suggestions on what technology may help them stay home alone safely. Most perceived that they would never need robotic assistance. Discussion: These findings suggest individuals with MCI or early dementia have limited perspectives on their own functional abilities now and in the future. Consideration of the individuals' diminished understanding of their own future illness trajectory is crucial when engaging in research or considering novel technological management solutions and may have implications for other aspects of advanced care planning.

Competencies for video telemedicine with older adult patients.

BACKGROUND: Telemedicine has recently become a part of mainstream clinical practice. Many curricula have been developed to teach general and specialty-specific video telemedicine skills; however, a lack of defined best practices for translating comprehensive interprofessional geriatric care to the virtual setting presents a unique challenge to educators and clinicians. This manuscript introduces and describes the development of competencies for video telemedicine with older adults for all health professionals who treat them. METHODS: A modified Delphi process was used in competency development. In 2019, interprofessional clinicians and educators who had expertise in telemedicine formed a competency development workgroup. The aim was to draft competencies for interprofessional video telemedicine with older adults while not duplicating existing competencies in geriatrics, interprofessional care, or general telemedicine. Draft competencies were circulated among experts in geriatric telemedicine and geriatric education for two rounds of comments. The competencies incorporated comments from 41 clinicians representing 7 professions. RESULTS: Twenty-three competencies were created spanning six domains. A temporal organization by domain was used: (1) Overarching considerations, (2) Pre-visit preparation, (3) Beginning of the visit, (4) History taking and communication during the visit, (5) Exam during the visit (organized by the 5Ms: Mind, Mobility, Medication, Multicomplexity, and Matters Most), and (6) Post-visit coordination. CONCLUSIONS: These newly developed competencies fill a gap left by those developed for specific disciplines or that do not address considerations for older adults. They lay the groundwork for curriculum development and the development of virtual Age-Friendly care.

Experience of the healthcare system for caregivers of persons with dementia.

Background: Persons with dementia are generally older and often have multiple other chronic conditions, necessitating several healthcare visits each year. Most live in the community supported by unpaid family caregivers who often assist with healthcare management. Little is known about caregiver and person with dementia experience engaging with the healthcare system, which may be more complicated in the context of cognitive changes such as memory loss. Methods: This is a targeted subanalysis of a major code, experience of the healthcare system, which emerged from a qualitative study investigating perspectives of family caregivers (N = 24) of community-dwelling persons with dementia about telemedicine. Results: Caregivers were asked to describe their experiences taking persons with dementia to medical visits. Caregivers' detailed descriptions of the process resulted in three categories related to their experience of the healthcare system: Preparing for Visits, Visit-Related Time and Travel, and In-Visit Experience. Categories revealed the complexity of dyads' participation in healthcare both in and around actual clinic visits. Findings also highlighted the often-negative impact of person with dementia cognitive symptoms on various stages of the process, which was partly offset by perceived benefits related to social participation and interactions with care teams. Conclusions: This study improves our understanding of the experience of engaging with the healthcare system for caregivers and persons with dementia. By explicating the complex factors involved with participating in healthcare visits outside the bounds of clinic walls, this study offers insights for clinicians and systems supporting persons with dementia and caregivers.

Factors Influencing Barriers and Facilitators to In-home Video Telehealth for Dementia Management.

OBJECTIVES: Quality dementia care, which recognizes caregivers as vital care partners, is a scarce resource. Innovative solutions like video telehealth may increase the reach of extant clinicians; however, little is known about perceived barriers and facilitators to in-home video telehealth for dementia management from the perspectives of caregivers. METHODS: Twenty-four caregivers of community-dwelling Veterans with dementia participated in semi-structured interviews. Questions gathered perceived facilitators and barriers to in-home video telehealth for dementia management through experience with related technology. Transcripts were analyzed using directed content analysis which was guided by factors previously identified as influencing older adults' adoption of technology. RESULTS: Caregiver experience with related technology was mostly facilitative to video telehealth, which was thought best suited for follow-up care. Increased access and decreased patient-caregiver stress were potential benefits. Barriers included perceived limitations of video and the belief that persons with dementia would have limited ability to manage technological aspects and to engage in video telehealth on their own. CONCLUSIONS: This study improves our understanding of the factors that caregivers perceive as barriers and facilitators to in-home video telehealth for dementia management. CLINICAL IMPLICATIONS: Strategies to optimize video telehealth include capitalizing on caregivers' social network and providing targeted training.

Program Evaluation of My Life, My Story: Virtual Storytelling in the COVID-19 Age.

OBJECTIVES: COVID-19 negatively affected older adults' well-being and quality of life, particularly individuals with dementia. My Life, My Story (MLMS) was developed at Veterans Health Administration as an opportunity for Veterans to interact and share life stories using guided interviews. This paper describes a program evaluation of MLMS delivered to Veterans with cognitive concerns and their caregivers using telehealth technology during COVID-19. METHODS: Fourteen Veteran-caregiver dyads completed MLMS interviews with occupational therapy trainees using telehealth technology. Most (10 of 14) participating Veterans had mild-to-moderate dementia. Trainees ascertained Veteran and caregiver demographics such as age and recent cognitive evaluation scores via chart review. Trainees also gathered Veteran-caregiver technology and interview experience through post-interview program evaluation questionnaires. RESULTS: Dyads reported generally positive interview and technological experience, despite technological glitches occurring in most (approximately 70%) interviews. Caregivers assisted with videoconferencing setup and participated in ten interviews. CONCLUSIONS: Veterans with cognitive concerns successfully participated in virtual MLMS interviews during COVID-19. Caregivers enhanced Veteran engagement and often provided technological support. CLINICAL IMPLICATIONS: Telehealth technology enabled participation in My Life, My Story by individuals with cognitive concerns and their caregivers. Post pandemic, clinicians may consider integrating telehealth technology with patients facing access challenges.