Browsing by Subject "Alzheimer disease and related dementias"

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    Comparing Crowdsourcing and Friendsourcing: A Social Media-Based Feasibility Study to Support Alzheimer Disease Caregivers
    (JMIR Publications, 2017-04-10) Bateman, Daniel Robert; Brady, Erin; Wilkerson, David A.; Yi, Eun-Hye; Karanam, Yamini; Callahan, Christopher M.; Psychiatry, School of Medicine
    BACKGROUND: In the United States, over 15 million informal caregivers provide unpaid care to people with Alzheimer disease (AD). Compared with others in their age group, AD caregivers have higher rates of stress, and medical and psychiatric illnesses. Psychosocial interventions improve the health of caregivers. However, constraints of time, distance, and availability inhibit the use of these services. Newer online technologies, such as social media, online groups, friendsourcing, and crowdsourcing, present alternative methods of delivering support. However, limited work has been done in this area with caregivers. OBJECTIVE: The primary aims of this study were to determine (1) the feasibility of innovating peer support group work delivered through social media with friendsourcing, (2) whether the intervention provides an acceptable method for AD caregivers to obtain support, and (3) whether caregiver outcomes were affected by the intervention. A Facebook app provided support to AD caregivers through collecting friendsourced answers to caregiver questions from participants' social networks. The study's secondary aim was to descriptively compare friendsourced answers versus crowdsourced answers. METHODS: We recruited AD caregivers online to participate in a 6-week-long asynchronous, online, closed group on Facebook, where caregivers received support through moderator prompts, group member interactions, and friendsourced answers to caregiver questions. We surveyed and interviewed participants before and after the online group to assess their needs, views on technology, and experience with the intervention. Caregiver questions were pushed automatically to the participants' Facebook News Feed, allowing participants' Facebook friends to see and post answers to the caregiver questions (Friendsourced answers). Of these caregiver questions, 2 were pushed to crowdsource workers through the Amazon Mechanical Turk platform. We descriptively compared characteristics of these crowdsourced answers with the friendsourced answers. RESULTS: In total, 6 AD caregivers completed the initial online survey and semistructured telephone interview. Of these, 4 AD caregivers agreed to participate in the online Facebook closed group activity portion of the study. Friendsourcing and crowdsourcing answers to caregiver questions had similar rates of acceptability as rated by content experts: 90% (27/30) and 100% (45/45), respectively. Rates of emotional support and informational support for both groups of answers appeared to trend with the type of support emphasized in the caregiver question (emotional vs informational support question). Friendsourced answers included more shared experiences (20/30, 67%) than did crowdsourced answers (4/45, 9%). CONCLUSIONS: We found an asynchronous, online, closed group on Facebook to be generally acceptable as a means to deliver support to caregivers of people with AD. This pilot is too small to make judgments on effectiveness; however, results trended toward an improvement in caregivers' self-efficacy, sense of support, and perceived stress, but these results were not statistically significant. Both friendsourced and crowdsourced answers may be an acceptable way to provide informational and emotional support to caregivers of people with AD.
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    Quality of Mobile Apps for Care Partners of People With Alzheimer Disease and Related Dementias: Mobile App Rating Scale Evaluation
    (JMIR Publications, 2022-03) Werner, Nicole E.; Brown, Janetta C.; Loganathar, Priya; Holden, Richard J.; Medicine, School of Medicine
    Background: Over 11 million care partners in the United States who provide care to people living with Alzheimer disease and related dementias (ADRD) cite persistent and pervasive unmet needs related to their caregiving role. The proliferation of mobile apps for care partners has the potential to meet care partners’ needs, but the quality of apps is unknown. Objective: This study aims to evaluate the quality of publicly available apps for care partners of people living with ADRD and identify design features of low- and high-quality apps to guide future research and user-centered app development. Methods: We searched the US Apple App and Google Play stores with the criteria that included apps needed to be available in the US Google Play or Apple App stores, accessible to users out of the box, and primarily intended for use by an informal (family or friend) care partner of a person living with ADRD. We classified and tabulated app functionalities. The included apps were then evaluated using the Mobile App Rating Scale (MARS) using 23 items across 5 dimensions: engagement, functionality, aesthetics, information, and subjective quality. We computed descriptive statistics for each rating. To identify recommendations for future research and app development, we categorized rater comments on score-driving factors for each MARS rating item and what the app could have done to improve the item score. Results: We evaluated 17 apps. We found that, on average, apps are of minimally acceptable quality. Functionalities supported by apps included education (12/17, 71%), interactive training (3/17, 18%), documentation (3/17, 18%), tracking symptoms (2/17, 12%), care partner community (3/17, 18%), interaction with clinical experts (1/17, 6%), care coordination (2/17, 12%), and activities for the person living with ADRD (2/17, 12%). Of the 17 apps, 8 (47%) had only 1 feature, 6 (35%) had 2 features, and 3 (18%) had 3 features. The MARS quality mean score across apps was 3.08 (SD 0.83) on the 5-point rating scale (1=inadequate to 5=excellent), with apps scoring highest on average on functionality (mean 3.37, SD 0.99) and aesthetics (mean 3.24, SD 0.92) and lowest on average on information (mean 2.95, SD 0.95) and engagement (mean 2.76, SD 0.89). The MARS subjective quality mean score across apps was 2.26 (SD 1.02). Conclusions: We identified apps whose mean scores were more than 1 point below minimally acceptable quality, whereas some were more than 1 point above. Many apps had broken features and were rated as below acceptable for engagement and information. Minimally acceptable quality is likely to be insufficient to meet care partner needs. Future research should establish minimum quality standards across dimensions for care partner mobile apps. Design features of high-quality apps identified in this study can provide the foundation for benchmarking these standards.