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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.

In a scenario of increasing longevity and social inequalities, Latin-America is an important contributor to the worldwide dementia burden. Caregivers’ health is fundamental to maintain the person with dementia quality of life. However, caregiving is a culturally sensible role that requires tailored solutions. The aim is to synthesize the evidence about non-pharmacologic interventions targeted to caregivers of people with dementia in Latin-American contexts. A comprehensive review of interventions in caregivers and persons with dementia in Latin-American countries was conducted using MEDLINE, Embase, PsycINFO, and Scopus with studies published until January 27th, 2020. Randomized clinical trials of non-pharmacologic interventions targeted to caregivers of people with dementia or dyads where included. Qualitative synthesis of the evidence was presented and analyzed. Overall, 9 pilot RCT were included for the final analysis (6 Brazil, 1 Colombia, 1 Mexico, 1 Perú). The biggest study recruited 69 caregivers and the smallest 13 dyads, with follow-up range of 3-6 months. 5 control groups received at least some other non-standard care type of intervention. 8 were targeted exclusively to caregivers (4 group intervention, 3 individual, and 1 combined) and 1 multicomponent intervention. Most frequent measured outcomes were caregiver’s burden, anxiety, depressive symptoms, and quality of life, and person with dementia neuropsychiatric symptoms. Individual interventions report better results in caregiver parameters such as burden and depressive symptoms and person with dementia neuropsychiatric symptoms. Group interventions presented mixed results. Nevertheless, the quality of evidence was low. There is a critical need to study interventions for caregivers in Latin-American contexts.

Decide, Discover, and Do!TM (D3) is an alpha-version iPad application developed and evaluated in a National Institute on Aging-funded Phase 1 SBIR project. The goal of D3 is to enhance the quality of life and care for community-dwelling persons living with dementia whose primary care partners are family members. D3 consists of (1) evidence-based activities for care partners to facilitate with their loved ones and (2) video-based interactive training on best practices in dementia care, for care partners. The activities are unique in that they create an overarching narrative for daily activities that creates a consistent routine capitalizing on procedural memory. The activities build upon one another, starting with the persons living with dementia choosing a topic (e.g., nature) early in the day, followed by the dyad engaging in a tablet-based activity related to the topic (e.g., reading an article about forests), and culminating in an experiential activity (e.g., tasting various foods found in nature, e.g. wild raspberries). A total of 18 participants took part in the this feasibility study. The study examined the impact of D3 training modules on knowledge transfer (16% mean increase in care partner knowledge across three courses); satisfaction with the training modules (96% satisfaction across three courses); and satisfaction with the activities programming (91% satisfaction across all items for persons living with dementia and 99% for care partners). No distal changes related to care partner stigma nor caregiver burden were seen in this short study.

End-of-life (EOL) care for persons with Alzheimer’s disease and related dementias (ADRD) is heterogeneous and, often, inconsistent with patients’ priorities. While differences in physician-patient communication or the health care decision-making process likely contribute to disparities in EOL care, little is known about the relationships between race, advance care planning (ACP), and quality of care among persons with ADRD. The aim of this study was to (1) characterize trends in both ACP and EOL treatment intensity in persons with ADRD and (2) test whether racial differences in ACP mediate disparities in EOL care. We analyzed a population-based cohort of older adults with cognitive impairment or dementia who participated in the Health and Retirement Study (HRS) and died between 2000 and 2014 (n = 5,316). While participation in ACP among persons with ADRD increased from 2000 to 2014 (66% to 83%, P < 0.05), models stratified by race showed that differences in participation rates across white and nonwhite persons with ADRD persisted over the sample period. Racial disparities in the location of death, a proxy for the intensity of EOL care, narrowed from 2000 to 2014. However, next-of-kin surrogates of nonwhite persons with ADRD were much more likely to report the decedent received “all care possible…in order to prolong life”. Assignment of a durable power of attorney was found to influence location of death, while both creation of a living will and participation in discussions about EOL care preferences were found to influence the likelihood that decedents received all possible life-prolonging treatments.

Cumulative studies have investigated Alzheimer’s disease (AD)-related issues among Asian Americans, but few have considered ethnic diversities within the Asian group. Using an ethnic-diverse Asian American sample, the present study explored the prevalence, ethnic variations, and predictors of stigmatizing beliefs about AD: (1) AD is a normal process of aging, (2) it is embarrassing to have a family member with AD, and (3) social interactions with an AD patient should be avoided. Inspired by the sociocultural health beliefs model, a focus was given on the role of immigration and culture-related variables. Using data from the 2015 Asian American Quality of Life survey (N = 2609, age range = 18-98) that includes Chinese, Asian Indian, Korean, Vietnamese, Filipino, and other Asians, logistic regression was conducted to examine how each of the three stigmatizing beliefs would be predicted by (1) demographic variables and (2) immigration and culture-related variables. Results indicate that the prevalence of the stigmatizing beliefs about AD varied across ethnicities. More than 63% of Vietnamese associated AD with a normal process of aging, and about 10% of Chinese reported that they would feel embarrassed if their family member had AD. Logistic regression models demonstrated that advanced age, male gender, low education, and limited English proficiency increased the odds of reporting one or multiple stigmatizing beliefs about AD. The findings suggest a varying degree of AD-related misconceptions and stigmatization and call attention to the need for culturally sensitive community education on AD in Asian communities.

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.

The aim of this study was to describe emergency-department nurses’ experiences in caring for older adults with dementia. A qualitative descriptive method was employed. A convenience sampling method was used to recruit nurses from seven regional emergency medical centers. Data were collected through to in-depth interviews and field notes until data were saturated. A total of 23 emergency-department nurses participated in the first interview and 18 of them participated in the second interview. Data were analyzed using qualitative content analysis with the ATLAS. ti 8.2 software program. Through data analysis of interview data, 36 codes and 10 categories were identified. Finally, four themes emerged from data analysis: lack of preparation for dementia care, tired of caring for older adults with dementia, an inappropriate emergency-department environment for older adults with dementia, and needs for improvements in dementia care. Emergency-department nurses felt completely unprepared for dementia care and felt exhausted after caring for older adults with dementia. In addition, the emergency department is considered to be an environment that does not consider older adults with dementia and thus is unsuitable for older adults with dementia. Also, nurses require systematic support when caring for older adults with dementia and improvement in awareness in the emergency department. Study results provide important data to develop educational material for emergency care including criteria for emergency medical assessments and policies of emergency medical institutions. In addition, the results provide evidence for clinical practice guideline for nurses who care for older adults with dementia in the emergency departments.

Background: An estimated 25% of older adults with diabetes (DM) may have co-occurring Alzheimer’s Disease and Related Dementias (ADRD), complicated by multiple treatment plans and providers. Assessing treatment burden has been limited to patients’ perspectives; little is known about caregiver perceptions of treatment burden despite their important role in personal care and treatment adherence. The purpose of this qualitative study was to describe caregiver perceptions of treatment burden for older adults with DM-ADRD. Methods: This qualitative study was conducted in the formative phase of “Enhanced Quality in Primary care for Elders with DM-ADRD (EQUIPED-ADRD) a pragmatic randomized controlled trial in a large, diverse healthcare system. A diverse sample of caregivers (n=15) of patients enrolled in the RCT participated in interviews about their caregiver role and perceptions of treatment burden of DM-ADRD clinical management. Qualitative data were analyzed using content analysis and themes about treatment burden were compared to domains on the Treatment Burden Questionnaire (TBQ). Results: Caregivers reported high levels of burden related to treatment plans for patients with DM-ADRD. Themes related to complexity and burden of medication management, monitoring (e.g., blood pressure, glucose monitoring), dietary and physical activity regimens, navigating healthcare providers and financial burden were reported. Caregivers also described high levels of emotional burden that was associated with patient’s cognitive decline and family functioning stress. Conclusions: Interventions to reduce treatment burden for patients and caregiver should include activating social/nursing services, respite care and care coordination that may support caregivers especially as patient treatment increases in complexity over time.

The stories told by veterans with dementia provide new insights into person-centered care for healthcare professionals. In this qualitative exploratory study, life review in seven WW II veterans with mild-moderate dementia was examined. Participants with mild-moderate dementia were selected from a larger study of seventy oldest-old veterans. Semi-structured interviews were conducted to elicit testimonial language about memorable war experiences, including their perception and evaluations of the war. The interviewer provided questions and prompts to facilitate responses when necessary. Despite decreased declarative memory manifested via reduction in details and specificity of information within narratives, participants demonstrated a desire to share their war time experiences. Veterans selected appropriate memories to share, indicating their preserved sense of self. They provided a general evaluation of their wartime experiences when prompted. Veterans expressed various types of identity related to both their social origin and their experience of participating in the war. Identities of social origin revealed cultural identities which were expressed via their sense of humor. Wartime identities include being a survivor, a patriot, and a tolerant person. Veterans also described how the GI Bill helped them become college educated. This study suggests that identity is relatively preserved more so in individuals with mild versus moderate dementia when producing autobiographical stories. The process of life review brings identity to the surface. Acknowledging the identity of individuals with dementia is essential to care as it recognizes the value of the person. Additionally, eliciting significant autobiographical memories serves as a valuable means of social engagement and connection.

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 dementia-related 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 café-style 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.

Clinical assessments for identifying mild cognitive impairment (MCI) can be costly and time-consuming. Few screeners for MCI exist that can be implemented quickly and outside of the clinic using flexible, cost-effective methods, such as web-based, mobile device-friendly assessments. Using data from middle-aged, racially and ethnically diverse Offspring Study participants (N=34 with MCI, N=54 without MCI; mean age: 53.9±3.4), we analyzed the sensitivity and specificity of several web- and telephone-based measures to identify MCI, after accounting for age and education. Web assessments included the Verbal Paired Associates (PA) and Visual PA tests. Phone assessments included the Number Series, Letter and Category Fluency, Number Span Forward & Backward, the AD8, and self-reported memory complaints. The discriminant ability of the web-based Visual PA test for MCI (ROC Area = .69) was comparable to phone-based measures, including the Category Fluency (ROC Area = .69), Number Span Forward (ROC Area = .61) and Backward (ROC Area = .67), and Letter Fluency (ROC Area = .68). Visual PA strongly predicted MCI, with a 98% reduction in the odds of MCI for every additional correct answer (OR=0.02), but our results are imprecise (95%CI: .000 to .76). A web-based Visual PA measure appears comparable to phone assessments in detection of MCI, although substantial uncertainty in its diagnostic precision remains. However, it is short, easily administered on a large-scale, and our evidence suggests that it can provide a sensitive and specific test to refer racially and ethnically diverse individuals for more thorough clinical assessment.

Objective: Explore the feasibility of integrating intensive, telephone-based health coaching programs in low-income senior housing communities to reduce Alzheimer’s risk behaviors. Design: Participants meeting study criteria: 60 years or older, a working telephone, no cognitive diagnoses, income below 1,000 USD monthly, and active cardiovascular or diabetic health symptoms were recruited from low-income housing units. Engagement in Alzheimer’s risk behaviors: Cigarette use, alcohol overuse, polypharmacy, inactivity, depression, and cognition status, were measured at enrollment, and 12 weeks post. Weekly coaching sessions focused on reducing behavioral risk for Alzheimer’s disease. Setting: Low-income senior apartments in Richmond, Virginia Participants: Twenty older adults, living in low income senior high rises. Participants were majority (95%) African-American (Mean= 69 years, SD=4.17, Range=61-77). Intervention: Participants engaged in a call with a coach for 12 weeks, focused on Alzheimer’s risk reduction. Participants identified with coach specific behaviors to target. Primary Outcome Measure: Feasibility of telephone-based health coaching to reduce Alzheimer’s Risk Behaviors. Feasibility is defined as participant engagement in health coaching and self-rated health outcomes. Results: Of the original 20 enrollees, 19 (95%) participated in coaching sessions. On average, 8.75 sessions were completed. All participants rated their experience as positive, and self-reported an improvement in health and healthy behaviors, in exit interviews. The coaching experience was rated 94.11 on a scale from (0-100). Participants rated their health coach, on average, 90.44 on a scale from (0-100). Participants rated their health improved as 92.37 on a scale from (0-100). Conclusion: Telephone-based health coaching was feasible based on participant engagement.

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.

Background: As the aging population continues to increase, it is estimated that persons with dementias (PWDs) will reach 13 million by 2050. Lack of caregiver skills related to mealtime planning and the ability to cope with dysfunctional behaviors are well-documented factors that influence nutritional outcomes for PWDs, leading to social isolation, and negatively impacting their home stay. The aim of this study protocol is to test the effectiveness of a train-the-trainer program in which non-paid volunteers in respite care centers deliver a telehealth mealtime intervention for caregivers of PWDs, Partners at Meals. The program is based on the C3P Model of Changing the Place, People and Person. Methods: A cluster-randomized controlled trial with parallel mixed methods evaluation processes is being conducted. Caregivers and PWD dyads, receiving respite services are randomized to receive Partners at Meals or enhanced-usual-care for six months. Within the intervention group, dyads are partnered with a C3P-trained volunteer who works with caregivers to devise monthly mealtime plans. Under enhanced-usual-care, dyads receive standardized educational materials modified from The Savvy Caregiver Program for Alzheimer’s caregiving. Primary outcomes include weight, calorie, protein and fluid intake of the PWDs and quality of life of the caregiver. Respite center administrators, program directors, volunteers and caregivers are evaluated for intervention fidelity, acceptability and sustainability. Implications: In this trial, we lay the groundwork to examine effectiveness and sustainability of a train-the-trainer telehealth program that could be widely disseminated for managing mealtimes in-the-home, while promoting quality of life of both the caregiver and PWDs.

When recruited individuals decline to participate in research, it can lead to sampling bias, increased costs, and extended duration of data collection. Understanding reasons why eligible participants decline participation may improve study enrollment rates. We aimed to understand barriers to recruitment and data collection in older adults with and without Alzheimer’s disease in the University of Kansas Alzheimer’s Disease Center Registry annual visit. We recruited Registry participants to join an observational sub-study using wrist-worn actigraphy to measure physical activity and sleep. We analyzed reasons for non-enrollment from encounters with non-participating individuals. Of 104 encounters, 37 were never recruited due to appointment cancellation, rescheduling, or no-show. Of the remaining encounters, the most common reasons for non-participation were physical limitations (N = 13), study logistics (e.g., limited supplies; N = 12), participant travel plans (N = 10), and unknown (N = 8). Other categories (N = 6) included disinterest, study partner concerns about pragmatics (e.g., fear that an individual with AD would lose the ActiGraph), problems with the study design (e.g., lack of feedback to participants), and participants’ limited availability or deferment to a later date. These findings offer insight into potential avenues to overcome barriers to participation in older adults already engaged in ongoing research through an Alzheimer’s Disease Center Registry. Researchers could benefit from adapting study procedures to correct for reasons of non-participation. For example, giving more education and reassurance to potential participants about observation and giving feedback regarding activity patterns.

Assessment of and care for people with dementia is shifting away from a purely medical disease model toward a more holistic, biopsychosocial approach. Within this movement is growing interest in balancing the negative, symptom-based view of people with dementia with better understanding of strengths and positive behaviors exhibited by people with dementia. The aim of this qualitative study was to gather perspectives of professional caregivers regarding positive behaviors and strengths observed in people with dementia. Data were obtained from three focus groups conducted at a memory care unit within a large long-term care facility. Focus group participants (N=14) worked in nursing and the activities department. Inductive methods were used to code and analyze focus group transcripts and recordings. Five major themes were identified: enduring abilities and values, enduring traits and strengths, sense of purpose and meaning, desire to be helpful, and prosocial behavior. These themes illustrate many domains in which professional caregivers have observed positive behaviors and strengths in people with dementia living in a long-term care facility. The results of this study contribute to the growing literature pertaining to the intersection of positive psychology and dementia research and practice. Future directions include development of an assessment tool to measure positive behavior and strengths in people living with dementia.

MOVING TOGETHER classes deliver an online live-streaming version of the evidence-based Paired PLIÉ (Preventing Loss of Independence through Exercise) group movement program for people living with dementia (PLWD) and caregivers (CGs) that targets physical movements, mindful body awareness, and social engagement. Paired PLIÉ has been found to be associated with improvements in physical, cognitive, social/emotional function, and relationship quality. However, CGs also reported logistical challenges related to attending in-person classes. Our goal was to assess feasibility and satisfaction with an online version of the program developed by Together Senior Health, Inc. Fifteen of twenty-one participants (70%; 8 PLWD, 7 CGs) successfully completed the 12-week program, of whom all (100%) reported being highly satisfied with online delivery. Participants described physical, social and emotional benefits of participating: “I liked the activities with partner and that I could feel various parts of my body getting massage and movement (PLWD);” and “Really enjoyed this class, so did my body, brain and my spirit (CG).” Participants strongly supported the online format: “[I liked] BEING AT HOME! …Getting ready to go out, going out and coming home takes a lot of energy and we are not sure we would participate if it were not online (PLWD).” In conclusion, we found that online delivery of Moving Together is feasible and acceptable to PLWD and CGs. Offering livestream virtual group movement classes such as Moving Together could enhance accessibility to evidenced-based programs for PLWD and CGs.

Being unable to find one’s way is a terrifying experience accompanied by feelings of fear or frustration. Persons with cognitive impairment (PWCIs) are apt to get lost and show difficulty in wayfinding effectiveness. Therefore, it is important to develop an instrument to measure the wayfinding effectiveness in PWCIs in northern Taiwan. This was a cross-sectional design with 180 PWCIs to examine the psychometric properties of the Chinese Wayfinding Efficient Scale (CWE) developed by Algase. An exploratory Factor Analysis with varimax rotation was computed to explore the underline conceptual structure of the CWE. The results derived 6 factors: FDPFE = Finding a destination and a path in familiar environments; FDPUFE=Finding a destination and a path in unfamiliar environments; SDAS = Sense of direction and analytic strategies; SDGS = Sense of direction and global strategies; LMD = Landmark and distance in familiar/unfamiliar environments; MAP = Using a map in familiar/unfamiliar environments. This solution explained 66.50% of variance. The internal consistency values for the total and subscales were excellent. Item 25 was single loaded, therefore, deleted. One-week test-retest reliability of the CWE total scale and subscales were estimated using a subset of data (n = 15) by calculating ICC. One subscale, Finding a distance and a path in familiar environments (FDPFE), did not have significant test-retest reliability but the rest of the subscales and total scale had excellent test-retest reliability (.81-1.00). The initial psychometric properties of the CWE were acceptable. Further research should explore the possible associate factors.