How Well Do Videos on YouTube Meet Information Needs of ADRD Family Caregivers? A Qualitative Analysis

Abstract Family caregivers need access to information, education, and support for taking care of individuals with Alzheimer’s disease and other dementia (ADRD). As YouTube is increasingly being used for sharing health information, videos regarding the disease and caregiving are becoming an important source of information to support family ADRD caregivers. This study aimed to assess the types and quality of information available on YouTube videos related to ADRD caregiving. A framework categorizing information needs of family ADRD caregivers was developed through a qualitative study with caregivers (N=21) and with healthcare and community stakeholders (N=6). The framework was used to conduct content analysis of YouTube videos. Nineteen categories of information needs were identified, including information about ADRD, healthcare services and treatment, available community resources, caregiving skills, and short- and long-term care. YouTube videos that met the keywords, language, and view selection criteria were evaluated by two coders on a developed rating scale to measure their relevance and helpfulness. A neurologist verified the ratings in 10% of the coded videos for quality assurance. There were 48 English and 23 Spanish videos met the selection criteria. More English (89.6%) than Spanish (56.5%) videos provided tips on handling specific ADRD symptoms. The majority categories of information needs (15 of the 19) were absent in most videos (87.0%, 89.6%). Many of the most watched videos were not rated as helpful. Community-based providers and healthcare organizations are encouraged to make high quality needed information in commonly accessed videos sharing service to support ADRD family caregivers.


EXPLORING THE EXPERIENCES OF PERSONS LIVING WITH DEMENTIA AND THEIR CARE PARTNERS IN A MEMORY CAFÉ-STYLE PROGRAM
Morgan Bunting, 1 Inga Antonsdottir, 2 Marti Bailey, 3 and Quincy Samus, 2 1. Johns Hopkins University, Halethorpe,Maryland,United States,2. Johns Hopkins University,Baltimore,Maryland,United States,3. Club Memory,Washington,D.C.,United States Community-based supportive care interventions are needed to address unmet needs and maximize quality of life for persons living with dementias and their care partners (care dyad).Memory cafés and similar programs serve as a potentially important vehicle to reduce dementia stigmatization, improve inclusiveness, promote well-being, socialization and meaningful activity engagement, and disseminate dementiarelated education and knowledge.Despite gaining popularity, little is known about how these programs impact participants or how they work best.The Club Memory® program in Washington, D.C. is an enhanced memory caféstyle program that delivers a normalizing environment, decreased negative stigma and a chance to experience a catalyst for change despite disease progression.Using qualitative methods, we investigated the perceived impact, benefits, and weaknesses of Club Memory from multi-stakeholder perspective, to explore how this program might be improved and standardized for broader implementation.We conducted two focus groups, one of care partners and one of persons living with dementia (N=12).Upon analyzing transcriptions, five common themes emerged among the focus groups: Atmosphere, Sense of Community, Skill-Building, Tools and Strength in Staff.Integrating perspectives from the care dyad revealed congruent thoughts on program perception, benefits and strengths, and opportunities for improvement.Club Memory® appears to be a valuable model that creates a stigma-free supportive environment, educates and engages the care dyad to foster understanding, confidence, curiosity and empowerment.Our findings contribute to a deeper understanding of the impact community-based strategies can positively impact the care dyad's life.Family caregivers need access to information, education, and support for taking care of individuals with Alzheimer's disease and other dementia (ADRD).As YouTube is increasingly being used for sharing health information, videos regarding the disease and caregiving are becoming an important source of information to support family ADRD caregivers.This study aimed to assess the types and quality of information available on YouTube videos related to ADRD caregiving.A framework categorizing information needs of family ADRD caregivers was developed through a qualitative study with caregivers (N=21) and with healthcare and community stakeholders (N=6).The framework was used to conduct content analysis of YouTube videos.Nineteen categories of information needs were identified, including information about ADRD, healthcare services and treatment, available community resources, caregiving skills, and shortand long-term care.YouTube videos that met the keywords, language, and view selection criteria were evaluated by two coders on a developed rating scale to measure their relevance and helpfulness.A neurologist verified the ratings in 10% of the coded videos for quality assurance.There were 48 English and 23 Spanish videos met the selection criteria.More English (89.6%) than Spanish (56.5%) videos provided tips on handling specific ADRD symptoms.The majority categories of information needs (15 of the 19) were absent in most videos (87.0%, 89.6%).Many of the most watched videos were not rated as helpful.Community-based providers and healthcare organizations are encouraged to make high quality needed information in commonly accessed videos sharing service to support ADRD family caregivers.

INFORMATION SEEKING BEHAVIOR OF LATINO FAMILY CAREGIVERS OF PEOPLE WITH ALZHEIMER'S DISEASE AND RELATED DEMENTIAS
Magaly Ramirez, 1 Sofia De Anda, 1 Haomiao Jin, 2 Joseph Herrera, 3 and Shinyi Wu, 2 1.University of Washington, Seattle, Washington, United States, 2. University of Southern California, Los Angeles, California, United States, 3. Rancho Los Amigos, Downey, California, United States Latinos are disproportionately affected by Alzheimer's disease and related dementias (ADRD) compared to non-Latino Whites.Family caregivers need access to high-quality information, education, and support.The study objective was to understand the information seeking behavior of Latino caregivers of individuals with ADRD.We conducted qualitative interviews in Los Angeles County with Latino caregivers of individuals with ADRD (N=21) and with healthcare and community stakeholders serving Latinos with ADRD and their caregivers (N=6).Caregivers sought information about ADRD, healthcare services and treatment, available community resources, caregiving skills, and short-and long-term care.Having limited time to seek information, lacking skills to navigate the Internet, and insufficient availability of information created barriers to accessing information.With access to information, caregivers increased their knowledge about ADRD, enrolled the person with ADRD in a memory/ dementia clinic, participated in treatment decisions, attended community events, learned how to respond to challenging behaviors, and enrolled in daycare/respite programs.Caregivers experienced barriers to using information due to the insurance and immigration status of the person with ADRD and due to services only being available in English.
Our study contributes new knowledge on the accessibility and use of information by Latino caregivers and their unique barriers in transforming information access into meaningful results.Healthcare and community-based providers can use our study findings to tailor informational interventions to the needs and preferences of Latinos and to the unique barriers they face in using information to support their caregiving role.

INITIAL TRANSLATION OF A DEMENTIA CAREGIVER INTERVENTION INTO A MOBILE HEALTH APPLICATION
Taylor Maynard, 1 Travis Frink, 2 Kunal Mankodiya, 2 Jennifer Davis, 3 Brian Ott, 1 Lisa Uebelacker, 4 and Geoffrey Tremont, 1 1.Rhode Island Hospital, Providence, Rhode Island, United States, 2. University of Rhode Island,Kingston,Rhode Island,United States,3. University of British Columbia,Kelowna,British Columbia,Canada,4. Butler Hospital,Providence,Rhode Island,United States Caring for a person with dementia is associated with negative outcomes.Few caregiver interventions have been implemented in community settings.Mobile technology is one method for reaching many caregivers.This project translated two empirically-supported interventions for dementia caregivers into a mobile health application.A team of clinical researchers and computer engineers developed an App called CARE-Well (Caregiver Assessment, Resources, and Education) over 6 months.The group worked closely to do the following: 1).translate interventional content to be compatible with a mobile platform; 2).create new materials; 3).determine App components that captured key intervention areas; 4).troubleshoot formatting, technology, and data security; and 5).educate each other about respective areas of expertise.We developed a beta version of the App that included: 1).assessment of caregiver stress and care recipient behavioral problems; 2).psychoeducation; 3).goal diary; 4).managing behavior problems; 5).online message forum; and 6).video library.Several challenges arose during the App development process, such as how to create navigation paths and goal lists based off users' assessment responses, data storage and usage tracking, enlarging text, and how to ensure privacy and confidentiality in the online message forum.Our experience developing the CARE-Well App showed that translating behavioral interventions into mobile health applications is feasible and dependent upon regular communication among multidisciplinary team members.Next steps for the App include beta testing with dementia caregivers and conducting a pilot randomized trial to determine feasibility for a future trial and its effects on caregiver stress.

LEAD IT!: AN APP TO ENABLE PERSONS WITH DEMENTIA TO LEAD GROUP ACTIVITIES FOR THEIR PEERS
Michael Skrajner, 1 and Gregg Gorzelle, 2 1. Hearthstone Alzheimer Care, Wickliffe, Ohio, United States, 2. Hearthstone Alzheimer Care, Hiram, Ohio, United States LEAD IT! is an app that enables persons with early and middle stage dementia to lead activities for their peers-i.e., other persons with dementia (PWD).An alpha version of the app was tested in a Phase 1 SBIR project.The alpha version included three Montessori-inspired activities.While PWD ostensibly view LEAD IT! as a set of enjoyable activities, it is actually an evidenced-based intervention aimed at reducing responsive behaviors and enabling PWD to fill meaningful social roles.A total of 24 PWD participated in the Phase 1 study: five leaders and 19 players.LEAD IT! Programming was implemented for six weeks, twice per week.LEAD IT! produced higher levels of positive engagement and affect, and lower levels of negative engagement, as compared to standard, baseline activities-i.e., non-digital activities led by staff.More specifically, when compared to baseline programming, players exhibited an 82% increase in Constructive Engagement (P=0.000),80% increase in Passive Engagement (P=0.000),60% reduction in Other Engagement (P=0.035), and 171% increase in Pleasure (P=0.000).One limitation of the Phase 1 study is that, at least insofar as the intervention is only implemented twice per week for six weeks, the positive outcomes seem to be limited to the period of time during which PWD are participating in the activity-i.e., changes on global measures, such as quality of life and depression were not detected.Still, the promising results of this study suggest that LEAD IT! is worthy of further development and evaluation in a planned Phase 2 study.