Efficacy of the residential care transition module: A telehealth intervention for dementia family caregivers of relatives living in residential long-term care settings.

The purpose of this study was to evaluate the efficacy of the Residential Care Transition Module, a six-session, psychosocial, and psychoeducational telehealth intervention for family caregivers of cognitively impaired relatives living in a residential long-term care setting. Eligible participants (including care recipients, regardless of time since admission) were randomized to treatment or usual care control conditions. Survey data were collected at baseline, 4 months, 8 months, and 12 months (N = 240). Primary analytic outcomes included caregiver subjective stress (a stress process mechanism) and depressive symptoms (a measure of global well-being). Secondary analytic outcomes included secondary role strains, residential care stress, caregiver sense of competence, and self-efficacy (additional mechanisms of action). General linear models tested for the main effects of the intervention at 4 months, and longitudinal mixed models examined the 12-month effects of the intervention. Post hoc analyses also examined the influence of moderators. No significant differences between the treatment and control groups for any primary analytic outcome were apparent. Caregivers in the treatment group whose relatives were admitted to residential long-term care in the prior 3 months were more likely to indicate reductions in depressive symptoms over the first 4 months of participation. Over the 12-month study period, caregivers in the treatment group who were employed reported increased self-efficacy over time. The heterogeneity of dementia care requires a broader consideration of key contextual factors that may influence the efficacy of nonpharmacological interventions. Aligning measures with the preferences, goals, and values of dementia caregivers may further demonstrate the direct benefits of interventions such as the Residential Care Transition Module. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

What Matters to Chinese and Korean American Dementia Caregivers: Navigating Cultural Influences in Dementia Care from Caregivers' Perspectives.

Background: Chinese and Korean Americans are among the fastest-growing minority groups in the US but face disparities in income and limited English proficiency, leading to health inequities in Alzheimer's disease and related dementias (ADRD) care. Objective: This study aims to understand cultural influences in ADRD care from the perspectives of Chinese and Korean American caregivers to inform culturally sensitive support for caregivers in Asian immigrant populations. Methods: We conducted a study that was part of a broader project aimed at informing the cultural adaptation of the NYU Caregiver Intervention-Enhanced Support (NYUCI-ES) program specifically for Chinese and Korean American caregivers managing multiple chronic conditions. In our interviews with 14 Chinese American and 11 Korean American caregivers, we focused on how their roles as primary caregivers were influenced by cultural and family expectations, the impact of caregiving on their personal and emotional well-being, and the specific barriers they face in accessing healthcare for themselves and their relatives with dementia. Results: Cultural beliefs and values significantly influenced the perceptions and utilization of support systems among Chinese and Korean American caregivers. Family stigma and adherence to cultural norms impacted their caregiving experiences. The study also highlighted the added burden during the pandemic and the potential benefits of telehealth and information technology in ADRD care. Conclusions: Developing culturally tailored, person-centered programs is crucial to meeting the unique needs of Chinese and Korean American caregivers. This research contributes to understanding and supporting this vulnerable population, promoting healthcare equity for ADRD patients and caregivers.

A Qualitative Analysis of Mechanisms of Benefit in the Residential Care Transition Module: A Telehealth Intervention for Caregivers of Relatives With Dementia Living in Residential Long-Term Care.

This study sought to determine the perceived benefits of the Residential Care Transition Module (RCTM), a novel multi-component, psychoeducational/psychosocial, telehealth intervention for caregivers of cognitively impaired relatives living in residential long-term care (RLTC). Few support programs exist for these caregivers. Determining the intervention's mechanisms of benefit will provide actionable clinical and research information regarding which key features aspects RLTC and public health agencies should offer their families. We conducted semi-structured interviews with 30 purposively selected participants randomly assigned to receive the RCTM. Additionally, an open-ended survey question solicited feedback at 4 (n = 90), 8 (n = 79), and 12 months (n = 77). Available qualitative data were analyzed for thematic content. Participants endorsed 9 mechanisms of benefit. Six mechanisms were related to RCTM content: education dementia progression and dementia behavior management, personalized resource provision, strategies for communication and engagement with the care recipient (CR) and others, management of multiple roles, and relaxation exercises. Three mechanisms were related to coaching: emotional support, knowledgeability, and being a neutral third party. Common benefits attributed to RCTM included improvement in mood, caregiving confidence, and communication and interactions with CR and others. Using qualitative data and analyses, we discovered the most valued aspects of the RCTM intervention. These mechanisms of benefit have not been described in the literature. Notably, we were unable to detect mechanisms of benefit in a separate analysis utilizing quantitative data. Findings emphasize the importance of including qualitative measures in intervention research and selecting quantitative measures that reflect the intervention's real effects, if any.

Feasibility, acceptability and potential helpfulness of the PROACTIVE intervention in Flanders, Belgium: A survey study.

BACKGROUND/OBJECTIVES: This study aimed to explore the feasibility of a Flemish adaptation of the New York University Caregiver Intervention (i.e., PROACTIVE intervention) modifying the recruitment and intervention content for informal caregivers of people with early cognitive decline, and across different subgroups. A feasibility study is necessary in order to reduce research waste for intervention adaptation and evaluation. METHODS: Researchers constructed, tested, and sent out a survey consisting of 43 questions on the following topics: awareness of symptoms of early cognitive decline, levels of cognitive performance using the updated Cognitive Performance Scale (CPS2), acceptability, and potential helpfulness of the intervention, and sociodemographic characteristics. Quantitative data were analyzed using descriptive statistics and logistic regression with SAS 9.4©. Qualitative data were analyzed using an inductive content analysis. RESULTS: A total of 463 informal caregivers completed the survey (mean age 58.8 ± 11.8, 83.6% female). Among them, 230 respondents who cared for people with cognitive decline indicated they would probably or certainly participate in the study. Identified factors influencing the recruitment were cognition, co-habitation, education, and employment status. Over half of the target caregivers indicated almost all services from the intervention could satisfy their needs. A majority perceived the PROACTIVE intervention would be helpful (69.4%), especially the CPS2 = 3 (76.1%) and CPS2 = 4 (74.1%) subgroups. CONCLUSION: The recruitment of target participants for a subsequent RCT evaluation study is feasible, and identified associated factors should be considered during the recruitment process. The PROACTIVE intervention and core components except 'peer-group participation' were perceived as helpful by most caregivers. The CPS2 = 3-4 subgroups were most accepting of the intervention and were most likely to benefit from the intervention.

Telehealth Support for Dementia Caregivers During the COVID-19 Pandemic: Lessons Learned From the NYU Family Support Program.

OBJECTIVES: In response to the needs of dementia caregivers during the COVID-19 pandemic, the NYU Langone Alzheimer's Disease and Related Disorders Family Support Program (FSP) quickly transitioned to providing most services online. To understand how dementia caregivers experienced FSP services after the switch to video telehealth, we conducted qualitative interviews of spouse or partner dementia caregivers. PARTICIPANTS: Ten participants were recruited from a convenience sample of dementia spouse or partner caregivers who used one or more online FSP services offered during the pandemic. DESIGN: Caregivers engaged in semi-structured interviews held via videoconference between May and June 2020. Qualitative analysis of interviews was conducted according to the principles of framework analysis. RESULTS: Caregivers reported high satisfaction with the FSP pre-pandemic and continued to feel supported when services were provided online. They transitioned to video telehealth services with little difficulty. CONCLUSIONS: While video telehealth is frequently cited as beneficial for those in rural communities, socioeconomically disadvantaged groups, or homebound individuals, our findings suggest that video telehealth is also advantageous for dementia caregivers, given their unique barriers, including lack of time due to caregiving responsibilities, lack of respite care for the person with dementia, and the additional burdens of travel time to access in-person services.

Applying Participatory Design Mixed-Methods Approaches to Refine Twitter-Based Social Support Interventions for African Americans and Hispanic Family Caregivers of Persons with Dementia.

We applied mixed-methods to refine our first version of the Twitter message library (English 400, translated into Spanish 400) for African Americans and Hispanic family caregivers for a person with dementia. We conducted a series of expert panels to collect quantitative and qualitative data using surveys and in-depth interviews. Using mixed methods to ensure unbiased results, the panelists first independently scored them (1 message/5 panelist) on a scale of 1 to 4 (1: lowest, 4: highest), followed by in-depth interviews and group discussions. Survey results showed that the average score was 3.47, indicating good to excellent (SD 0.35, ranges from 1.8 to 4). Quantitative surveys and qualitative interviews showed different results in emotional support messages.

Application of Machine Learning Techniques to Examine Social Service Needs Among Hispanic Family Caregivers of Persons with Dementia.

We applied machine learning algorithms to examine the relationship between demographics and outcomes of the social work services used by Hispanic family caregivers of persons with dementia recruited for a clinical trial in New York City. The social work service needs were largely concentrated on instrumental support to gain access to the healthcare system rather than other concrete services (e.g., housing or food programs) or to address psychological needs among the caregivers with relatively higher income. A finding from the machine learning approach was that among those who receive medical-related social work services, frequent users (≥10 times) with high family friend support(>4) were more likely than frequent users without such support to have their issues resolved (Accuracy: 81.9%, AUC: 0.82, F-measure: 0.86 by J48). Even though half of the participants received social work services multiple times, the needs of the caregivers remained unmet unless they sought social work services frequently (more than ten times).

Stressors and Acceptability of Services Among Black Caregivers of Persons With Memory Problems.

The purpose of the current study was to identify stressors of Black family caregivers (FCGs) of persons with memory problems (PWMPs), services of interest, and barriers to use of these services. Black FCGs were recruited from the Alzheimer's family program at the University of Alabama at Birmingham and affiliated geriatric clinics, media sources, and word-of-mouth referrals. Of 38 Black FCGs interviewed, 26 (68%) were female, 18 (47%) were employed, and 21 (55%) were adult children. Average age of FCGs was 52.11 years. Mean scores for the AD8 Dementia Screening Scale (mean = 13.95, SD = 2.17) and Clinical Dementia Scale Sum of Boxes (mean = 7.29, SD = 0.87) were higher than clinical cutoffs. The most common stressors for Black FCGs were PWMPs' inability to remember who they were, managing care recipients' financial affairs, and managing PWMPs' comorbid conditions. FCGs were most interested in educational material regarding treatment and diagnosis (55.3%), caring for people with dementia (52.6%), understanding dementia (52.6%), and financial/legal services (52.6%). FCGs stated that transportation difficulties and the need for a relief person were barriers to use of services. Results suggest that Black FCGs may be more likely to participate in interventions that include virtual conferencing modalities. [Journal of Gerontological Nursing, 48(6), 13-18.].

Application of persuasive systems design principles to design a self-management application user interface for Hispanic informal dementia caregivers: user preferences and perceptions.

OBJECTIVE: We designed an mHealth application (app) user interface (UI) prototype informed by participatory design sessions, persuasive systems design (PSD) principles, and Lorig and Holman's self-management behavior framework to support self-management activities of Hispanic informal dementia caregivers and assessed their perceptions and preferences regarding features and functions of the app. MATERIALS AND METHODS: Our observational usability study design employed qualitative methods and forced choice preference assessments to identify: (1) the relationship between user preferences for UI features and functions and PSD principles and (2) user preferences for UI design features and functions and app functionality. We evaluated 16 pairs of mHealth app UI prototype designs. Eight paper-based paired designs were used to assess the relationship between PSD principles and caregiver preferences for UI features and functions to support self-management. An Apple iPad WIFI 32GB was used to display another 8 paired designs and assess caregiver preferences for UI functions to support the self-management process. RESULTS: Caregivers preferred an app UI with features and functions that incorporated a greater number of PSD principles and included an infographic to facilitate self-management. Moreover, caregivers preferred a design that did not depend on manual data entry, opting instead for functions such as drop-down list, drag-and-drop, and voice query to prioritize, choose, decide, and search when performing self-management activities. CONCLUSION: Our assessment approaches allowed us to discern which UI features, functions, and designs caregivers preferred. The targeted application of PSD principles in UI designs holds promise for supporting personalized problem identification, goal setting, decision-making, and action planning as strategies for improving caregiver self-management confidence.

Analyzing Topics and Sentiments from Twitter to Gain Insights to Refine Interventions for Family Caregivers of Persons with Alzheimer's Disease and Related Dementias (ADRD) During COVID-19 Pandemic.

We randomly extracted Tweets mentioning dementia/Alzheimer's caregiving-related terms (n= 58,094) from Aug 23, 2019, to Sep 14, 2020, via an API. We applied a clustering algorithm and natural language processing (NLP) to publicly available English Tweets to detect topics and sentiment. We compared emotional valence scores of Tweets from before (through the end of 2019) and after the beginning of the COVID-19 pandemic (2020-). Prevalence of topics related to caregiver emotional distress (e.g., depression, helplessness, stigma, loneliness, elder abuse) and caregiver coping (e.g., resilience, love, reading books) increased, and topics related to late-stage dementia caregiving (e.g., nursing home placement, hospice, palliative care) decreased during the pandemic. The mean emotional valence score significantly decreased from 1.18 (SD 1.57; range -7.1 to 7.9) to 0.86 (SD 1.57; range -5.5 to 6.85) after the advent of COVID-19 (difference -0.32 CI: -0.35, -0.29). The application of topic modeling and sentiment analysis to streaming social media provides a foundation for research insights regarding mental health needs for family caregivers of a person with ADRD during COVID-19 pandemic.

Applying Social Network Analysis to Compare Dementia Caregiving Networks on Twitter in Hispanic and Black Communities.

We applied social network analysis (SNA) on Tweets to compare Hispanic and Black dementia caregiving networks. We randomly extracted Tweets mentioning dementia caregiving and related terms from corpora collected daily via the Twitter API from September 1 to December 31, 2019 (initial corpus: n = 2,742,539 Tweets, random sample n = 549,380 English Tweets, n= 185,684 Spanish Tweets). After removing bot-generated Tweets, we first applied a lexicon-based demographic inference algorithm to automatically identify Tweets likely authored by Black and Hispanic individuals using Python (n = 114,511 English, n = 1,185 Spanish). Then, using ORA, we computed network measures at macro, meso, and micro levels and applied the Louvain clustering algorithm to detect groups within each Hispanic and Black caregiving network. Both networks contained a similar proportion of dyads and triads (Hispanic 88.2%, Black 88.9%), while the Black caregiving network included a slightly larger proportion of isolates (Hispanic 0.8%, Black 4.0%). This study provides useful baseline information on the composition of existing large groups and small groups. In addition, this work provides useful guidance for future recruitment strategies and the design of social support interventions regarding emotional needs for Hispanic and Black dementia caregivers.

Longitudinal study: understanding the lived experience of couples across the trajectory of dementia.

BACKGROUND: The longitudinal study, "Couples Lived Experiences," focuses on whether and how relationship characteristics of older couples change with the cognitive decline of one member of the couple, and how these changes affect each individual's emotional and physical health outcomes. Until now, most psychosocial research in dementia has focused either on the person with dementia (PWD) or the caregiver separately. The previous literature examining relationship characteristics and their role in outcomes for the caregiver and PWD is scant and suffers from methodological issues that limit the understanding of which relationship characteristics most influence outcomes for caregivers and care-receivers and what other factors may mitigate or exacerbate their effects. METHODS: We will enroll 300 dyads and collect information via online interviews of each member of the couple, every 6 months for 3 years. Relationship characteristics will be measured with a set of short, well-validated, and reliable self-report measures, plus the newly developed "Partnership Approach Questionnaire." Outcomes include global quality of life, subjective physical health, mental health (depression and anxiety), and status change (transitions in levels of care; i.e., placement in a nursing home). Longitudinal data will be used to investigate how relationship characteristics are affected by cognitive, functional, and behavioral changes, and the impact of these changes on health outcomes. Qualitative data will also be collected to enrich the interpretation of results of quantitative analyses. DISCUSSION: Psychosocial interventions have demonstrated effectiveness in promoting the wellbeing of PWD and their caregivers. The knowledge gained from this study can lead to the development or enhancement of targeted interventions for older couples that consider the impact of cognitive and functional decline on the relationship between members of a couple and thereby improve their wellbeing. TRIAL REGISTRATION: This study has been registered with ClinicalTrials.gov. ClinicalTrials.gov Identifier is: NCT04863495 .

Assessing an evidence-based intervention for spouse caregivers of persons with Alzheimer's disease: results of a community implementation of the NYUCI in Israel.

OBJECTIVES: Alzheimer's disease (AD) affects not only the person with the illness, but family caregivers as well. The NYU Caregiver Intervention (NYUCI), a psychosocial intervention which has demonstrated both short and long-term benefits for caregivers, has been used widely in the United States and in Australia and England. The Israeli study was a hybrid between a community implementation study and a randomized controlled trial (RCT) of the NYUCI in a non-English speaking country. METHOD: A sample of 100 spouse caregivers participated in trial comparing the NYUCI provided by ten Israeli clinicians (enhanced care), to support group participation (usual care). The major outcome of interest was caregiver depressive symptoms, measured with the Geriatric Depression Scale. A linear random effects regression model controlling for factors associated with depressive symptoms was used to plot the longitudinal trajectories of depressive symptoms over the two-year study period and compare outcomes for the enhanced care and control groups. RESULTS: One hundred spouse caregivers enrolled, of whom 81 provided data at baseline and at one or more post intervention assessments. The Israeli adaptation of the NYUCI was effective in reducing depressive symptoms reported by caregivers compared to their counterparts in the control group, b= -1.29 [95%CI (-2.43, -0.15)], p= .0265. CONCLUSION: While implementing a randomized controlled trial of an intervention developed and tested in traditional research settings using community providers in Israel, posed unique challenges, the study demonstrated benefits to caregivers. As a result, 30 municipalities in Israel are currently implementing an ongoing adaptation of the NYUCI.

Applying Artificial Intelligence to Predict Self-Reported Poor Health Among Black and Hispanic Caregivers with Mild Cognitive Impairment.

We applied artificial intelligence techniques to build correlate models that predict general poor health in a national sample of caregivers with mild cognitive impairment (MCI). Our application of deep learning identified age, duration of caregiving, amount of alcohol intake, weight, myocardial infarction (MI) and frequency of MCI symptoms for Blacks and Hispanics whereas frequency of MCI symptoms, income, weight, coronary heart disease (CHD), age, and use of e-cigarette for the others as the strongest correlates of poor health among 81 variables entered. The application of artificial intelligence efficiently provided intervention strategies for Black and Hispanic caregivers with MCI.

The ResidentialCare Transition Module: a single-blinded randomized controlled evaluation of a telehealth support intervention for family caregivers of persons with dementia living in residential long-term care.

BACKGROUND: Families do not fully disengage from care responsibilities following relatives' admissions to residential long-term (RLTC) care settings such as nursing homes. Caregiver stress, depression, or other key outcomes remain stable or sometimes increase following a relative's RLTC entry. Some interventions have attempted to increase family involvement after institutionalization, but few rigorous studies have demonstrated whether these interventions are effective in helping families navigate the potential emotional and psychological upheaval presented by relatives' transitions to RLTC environments. The Residential Care Transition Module (RCTM) provides six formal sessions of consultation (one-to-one and family sessions) over a 4-month period to family caregivers who have admitted a relative to a RLTC setting. METHODS: In this embedded mixed methods randomized controlled evaluation, family members who have admitted a cognitively impaired relative to a RLTC setting are randomly assigned to the RCTM (n = 120) or a usual care control condition (n = 120). Primary outcomes include reductions in family members' primary subjective stress and negative mental health outcomes; secondary role strains; and residential care stress. The mixed methods design will allow for an analysis of intervention action mechanisms by "embedding" qualitative components (up to 30 semi-structured interviews) at the conclusion of the 12-month evaluation. DISCUSSION: This evaluation will fill an important clinical and research gap by evaluating a psychosocial intervention designed for families following RLTC admission that determines whether and how the RCTM can help families better navigate the emotional and psychological challenges of residential care transitions. TRIAL REGISTRATION: ClinicalTrials.gov (NCT02915939, prospectively registered).

Participatory art-based activity, community-dwelling older adults and changes in health condition: Results from a pre-post intervention, single-arm, prospective and longitudinal study.

BACKGROUND: Participatory art-based activities enhance the well-being and quality of life of patients. Few studies have examined the effects of these activities in community-dwelling older adults. This study aims to examine changes in well-being, quality of life and frailty associated with a weekly art-based activity, known as "Thursday at the Museum", performed at the Montreal Museum of Fine Arts (MMFA) in community-dwelling older adults. METHODS: Based on a pre-post intervention, single-arm, prospective and longitudinal design, 130 community-dwelling older adults (mean age 71.6 ± 4.9, 91.5 % female) were enrolled and completed this experimental study. The intervention was a participatory art-based activity carried out at the MMFA. Groups of participants (30-45 individuals) met for 2.3 h once a week for a 12-week period (defining a session). Before and after the first (M0), the fifth (M1), the ninth (M2) and the twelfth (M3) workshops, well-being was assessed. Quality of life, frailty, physician visits and hospitalizations were also assessed. RESULTS: The mean well-being score improved after each workshop compared with baseline (P ≤ 0.001), i.e., from M0 to M3. The magnitude of this change in well-being was significant at M3 when M0 was used as a reference value (coefficient of regression beta (ß) = 3.22 with P = 0.037). Quality of life gradually increased from M1 to M3 (ß increased from -0.50 to -2.1 with all P-values ≤0.003). The proportion of vigorous participants increased significantly, whereas the proportion of mild frail participants decreased at M3 only (ß=-0.70 with P = 0.001). CONCLUSION: The MMFA participatory art-based activity session had multidimensional positive effects on mental and physical health outcomes. These results suggest that museums may become key partners in public health policy initiatives for health prevention in older populations. TRIALREGISTRATION: NCT03557723.

FAMILIES: an effective healthcare intervention for caregivers of community dwelling people living with dementia.

Objectives: Caregiving for a person with dementia (PWD) carries increased risk of poorer health and quality of life. Non-pharmacological interventions improve outcomes for caregivers of PWDs. We evaluated the efficacy of a modified New York University Caregiver Intervention (NYUCI), named FAMILIES, delivered to spousal and non-spousal caregivers of PWDs from diverse etiologies in a reduced number of sessions.Methods: Participants were 122 primary caregivers for community dwelling PWDs in Virginia. The intervention included two individual and four family/group counseling sessions that integrated dementia education, coping skills and behavioral management training, emotional support, and identification of family and community resources. Assessment of depression, caregiver well-being and burden, and caregiver reactions to the behavioral symptoms of dementia (BSD) were completed at baseline, the sixth session, and 6-month follow-up.Results: Symptoms of depression (p < .001) and caregiver burden (p = .001) and caregivers' capacity to effectively manage their reactions to BSD (p = .003), significantly improved at the sixth session. Benefits were maintained at 6-month follow-up. Being married and female predicted improvement in caregiver burden; being male and living in a rural area predicted reduced risk of depression. Caregivers reported that the intervention was helpful and had a positive impact on the PWD.Conclusions: Modifications to the NYUCI did not diminish its efficacy. Caregivers in FAMILIES experienced improvements in depressive symptoms, caregiver burden, and their ability to effectively manage their reactions to BSD. Systemic support for implementing FAMILIES could have a broad impact on caregivers, PWDs, and the healthcare system.

Mining Twitter to Inform the Design of Online Interventions for Hispanic Alzheimer's Disease and Related Dementias Caregivers.

BACKGROUND/OBJECTIVE: Hispanics are about 1.5 times as likely as non-Hispanic Whites to experience Alzheimer's disease and related dementias (AD/ADRD). Eight percent of AD/ADRD caregivers are Hispanics. The purpose of this article is to provide a methodological case study of using data mining methods and the Twitter platform to inform online self-management and social support intervention design and evaluation for Hispanic AD/ADRD caregivers. It will enable other researchers to replicate the methods for their phenomena of interest. METHOD: We extracted an analytic corpus of 317,658 English and Spanish tweets, applied content mining (topic models) and network structure analysis (macro-, meso-, and micro-levels) methods, and created visualizations of results. RESULTS: The topic models showed differences in content between English and Spanish tweet corpora and between years analyzed. Our methods detected significant structural changes between years including increases in network size and subgroups, decrease in proportion of isolates, and increase in proportion of triads of the balanced communication type. DISCUSSION/CONCLUSION: Each analysis revealed key lessons that informed the design and/or evaluation of online self-management and social support interventions for Hispanic AD/ADRD caregivers. These lessons are relevant to others wishing to use Twitter to characterize a particular phenomenon or as an intervention platform.

Helping Hispanic Family Caregivers of Persons With Dementia "Get the Picture" About Health Status Through Tailored Infographics.

BACKGROUND AND OBJECTIVES: Caregivers need to understand their health status and the disabilities of the care recipient to engage in effective health management. Infographics tailored with personal health data are a promising approach to facilitating comprehension, particularly for individuals with low health literacy/limited English proficiency. Such approaches may be especially important for dementia caregivers given the high care burden. RESEARCH DESIGN AND METHODS: Guided by the Health Belief Model and the Data-Frame Theory of Sensemaking, we conducted iterative participatory design sessions with Hispanic family caregivers (N = 16) of persons with dementia. We created multiple prototype infographic designs to display scores on validated instruments of topics such as caregiving burden, overall health, and psychological distress. We retained and refined designs participants judged to be easily comprehensible. Analysis focused on identifying the graphical elements that contributed to the comprehensibility of designs and on evaluating participants' reactions to the designs. RESULTS: Successful infographics used intuitive scaling consistent with caregivers' perspective of dementia as inevitable decline. Participants reacted to infographics by describing the self-management actions they would take to address the health issue at hand. DISCUSSION AND IMPLICATIONS: Tailored infographics supported caregivers' comprehension of their health status and served as cues to engaging in self-management. As such, they should be presented in the context of informational support that can facilitate selection of appropriate next steps. This can mitigate the potential mental and physical health consequences of caregiving and enable caregivers to continue to care for their relatives with dementia with less damage to their own well-being.

The effects of information and communication technologies on informal caregivers of persons living with dementia: A systematic review.

INTRODUCTION: Information and communication technology (ICT) has emerged as promising to support health care consumers, including informal caregivers. This systematic review seeks to evaluate the state of the science of ICT interventions on the health of informal dementia caregivers. METHODS: We searched PubMed, CINAHL, Web of Science, and PsycINFO using concepts associated with ICT, dementia, and caregiver. Studies were assessed using the Quality Assessment Tool for Quantitative Studies. RESULTS: We identified 657 full-text publications. After removal of duplicates and title, abstract, and full-text screening, the quality of 12 studies was assessed. Studies varied in technology, implementation, results, and intervention evaluation. DISCUSSION: The methodological quality of the ICT intervention studies among dementia family caregivers was moderate to strong, yet outcome measurement was not uniform. The evidence is strongest for various forms of telephone-based interventions. However, there is a need for research that includes heterogeneous participants based on gender, race, and ethnicity.