Interventions that are self-administered and delivered online are increasingly being seen as a flexible way to support family caregivers. Respite, defined as a planned break or time away from caregiving, is among the most needed and requested forms of caregiver support; yet, few caregiver interventions address caregivers’ use of respite. We describe the methodology and data used to assess the feasibility, usability, and acceptability of the Time for Living and Caring (TLC) intervention; a technology delivered intervention (app) for dementia caregivers to improve respite time use. This study’s evaluation effort is theoretically guided by a multidimensional definition of feasibility and employs a mixed-methods approach for feasibility analysis. Stakeholder feedback collected via focus groups during the intervention development (n=15), self-reported surveys from participants enrolled in the pilot trial of the intervention (n=163), surveys of a nationwide sample of respite providers (n=57), and end-user statistics, captured passively by Google Analytics from those using the app, were used in the analysis of the TLC intervention feasibility. Data and metrics, overall, show high rates of feasibility for the TLC online intervention. Favorable ratings of intervention features ranged from 83-99%, which, when combined with open-ended recommendations for improvements, indicate a high degree of usability. Acceptability was measured through appraisal of the intervention experience (85% positive), potential future use (78%), willingness to recommend (91%), and perceived benefit (> 80%). Taken together, these data suggest that TLC is a promising intervention that could be implemented as an on-demand resource for respite-using caregivers irrespective of where they are located or when they choose to access it. Additionally, this paper provides a blueprint for systematically evaluating multiple dimensions of feasibility, using various forms of mixed-methods data collected during intervention development and pilot-testing of an intervention, which should help streamline the eventual implementation of effective interventions in real-world settings. ClinicalTrials.gov NCT03689179

Objectives: Using "digital inequality" as a conceptual framework, this study evaluates the feasibility and usability of a technology-delivered intervention (an "app") for Alzheimer's and related dementia family caregivers. Time for Living and Caring (TLC) is an on-line intervention that provides virtual coaching and self-administered education and resources. Methods: A sample of family caregivers (n = 163) used the tool for 16 weeks, which included completing the Computer Proficiency Questionnaire (CPQ-12) at baseline. Analyses investigate the relationship between age, CPQ scores, intervention use, appraisal, and caregiver outcomes. Results: Age was inversely associated with CPQ; however, CPQ scores did not have a significant relationship with participant's self-perceived benefits or intervention appraisal. Computer Proficiency Questionnaire scores provided insight regarding research feasibility, with lower scores associated with greater odds of discontinuing engagement. Discussion: CPQ-12 scores can be used as a screening tool to identify those who may need additional support to engage with and benefit from technology-delivered interventions.

Background and Objectives Respite, defined as time away from caregiving, is the most requested type of caregiver support. Time for Living and Caring (TLC) is a virtual coaching "app" that helps caregivers schedule and plan their respite time-use. The objectives of this analysis are: (1) to assess the efficacy of the TLC intervention on respite time-use and on caregiver well-being and (2) to identify the key features of the intervention that serve as the likely mechanism of action. Research Design and Methods A sample of dementia caregivers (n = 163, 79% female, 84% White, 6% Hispanic, average age 62) were randomized into one of two intervention delivery methods. Intervention efficacy was evaluated using pre/post-comparisons of respite time-use and an additive "dosing" model that estimated unique parameters associated with the exposure to each specific intervention component. Results Both immediate and delayed-attention groups reported increased respite time. They also improved in their ability to plan and perceive benefit from their respite time-use over the 16-week intervention period. At 8 weeks, the immediate group did not change in anxiety, whereas the delayed group worsened (p < .001). At 16 weeks, the groups were similar in their anxiety levels. By the 20-week follow-up period, when neither group had access to TLC, both experienced an increase in anxiety. Discussion and Implications TLC is a promising intervention that may support caregivers' well-being, by helping them schedule and plan their respite to maximize its benefit. The provision of weekly coaching seems to be the intervention component (mechanism) associated with caregiver outcomes. Clinical Trial Registration NCT03689179

BACKGROUND:Recruiting participants for research studies is a critical yet challenging task. Community-engaged recruitment strategies have gained prominence as effective means to engage diverse populations and ensure the representativeness of study samples. This case study aims to investigate the cost and effectiveness of various recruitment methods in enhancing research participation.METHODS:A comparative approach was employed to assess the outcomes of five different recruitment strategies used in the Time for Living & Caring (TLC) research study. Data on recruitment success, participant demographics, and retention rates were collected and analyzed using descriptive statistics, including ANOVA and Chi-squares, to statistically compare the outcomes associated with 5 different recruitment methodologies. The recruitment methodologies included two community-engaged strategies (community partner referral and community-based recruiters), a clinical database, social media, and word-of-mouth referral.CONCLUSION:The meta-data used to build this methodological case study describe different recruitment methodologies that may be used for clinical trials. This data-driven evaluation provides examples and considerations for researchers when developing budgets and proposals for future clinical trials. The primary finding is that there are tradeoffs in terms of cost, time, labor, and ultimately the representativeness of the sample, based on the type of recruitment methodology chosen.

Older adult health, while partially determined by genetics, is mostly determined by behavioral and lifestyle choices. Researchers and interventionists develop and administer behavioral health interventions with older adults, and interventions are advertised in any number of settings, for example, by providers in healthcare settings and by activity directors in senior centers or assisted living facilities. However, previous studies and metanalyses indicate that many interventions targeting older adults are unsuccessful in recruitment or in retention. While providers and activity directors may assume older adults are unwilling to participate in behavioral change, in reality, low participation may be caused by erroneous design and administration. The objective of this manuscript is to recommend to creators and implementers of behavioral interventions for older adults that they focus on two critical considerations: the contextual perspective pertaining to healthy aging as well as an appropriately employed theoretical model that most effectively informs program design and implementation. In this commentary, we discuss how Prochaska and DiClemente's Transtheoretical Model of Health Behavior Change may lead to more desirable outcomes as it considers that a person may be at any one of six stages of change, from pre-contemplation to maintenance. Currently, many behavioral interventions are targeted at individuals who are poised for action or in maintenance phases, ignoring those in earlier phases, resulting in limited overall success. Regarding viewing healthy aging in a contextual manner, determinants external to the individual may remain unnoted and unconsidered when designing or recruiting for a behavioral intervention. In conclusion, the integration of an intrapersonal health behavior model such as the Transtheoretical Model of Health Behavior Change, coupled with clearer considerations of the interplay of contextual factors operating in the lives of older adults, may allow for more effective design and implementation, as well as resulting in higher participation in behavioral interventions targeted toward older adults.

Technology delivered interventions are becoming increasingly common as they are considered a cost-efficient and an effective way to deliver self-administered education and support to caregivers. These technology-based interventions have been shown to benefit caregivers by increasing their ability to help cope with caregiver stress. There are also potential challenges associated with technology use such as lack of “meaningful access” to technology systems for some segments of the population (e.g., older adults, individuals of lower socio-economic status) and usability problems. The purpose of this study is to explore the role of caregiver characteristics and competencies when evaluating the effectiveness of technology-based interventions. Time for Living and Caring (TLC) is an on-line intervention that provides virtual coaching and self-administered education and resources to caregivers, with the primary goal of helping them schedule and maximize the utility of their respite time. We conducted a pilot test, where Alzheimer’s and related dementia caregivers (n = 159) used the tool for 16 weeks. Our baseline survey of participants employed the Computer Proficiency Questionnaire, or CPQ-12, to measure various computer proficiencies. This score was then used to investigate differences in overall appraisal of the intervention and self-reported caregiver outcomes post intervention. Our findings indicate that CPQ does decrease by age (P>|t| = .000), but that the TLC intervention received favorable reviews despite one’s CPQ score. This includes participant’s self-perceived benefits, willingness to recommend the intervention to others, and their own willingness to use TLC in the future. It is noted that this sample was highly educated and proficient with technology. This is part selection, given the nature of the study and recruitment strategies. However, these findings also challenge the narrative that older adults are less capable or willing to use on-line resources. Overall, computer proficiency was lower among older participants as expected, but computer proficiency was not associated with the evaluation of the intervention or the benefits to caregiver well-being. Using a design process that focuses on universal design principals, and considers the needs and characteristics of the target population, appears to increase accessibility and usability of technology delivered intervention for caregiver support.

Dementia caregivers are susceptible to adverse physical and mental health outcomes, given the often prolonged and challenging care and support they provide to family members with Alzheimer’s Disease and Related Dementias (ADRD). This report describes a community-engaged implementation of a novel behavioral intervention - an “app” (interactive website) called TLC (Time for Living and Caring) that coaches caregivers on how to maximize the benefits associated with respite time. The rationale and features of the TLC intervention and the full research protocol used to develop and then evaluate its feasibility, acceptability, and initial efficacy are described here.

Because of the demanding care needs associated with dementia, family caregivers often have increasing anxiety and burden over time. Respite, defined as time away from caregiving, is the most requested type of caregiver support and is hypothesized to benefit caregiver wellbeing. However, many caregivers report low respite satisfaction, feeling as though they wasted their time or that they did not know how to use their respite time in a way that benefited them. Time for Living and Caring (TLC) is a virtual coaching “app” that helps caregivers schedule and plan their respite time. With funding support from NIA (R01-AG061946), we conducted a pilot test with dementia caregivers (n = 159), randomized into one of two delivery methods – an immediate group that could access all features and functions of the app for 16 weeks, and a delayed-attention group that received initial instructions on calendaring for 8 weeks and then the more interactive coaching features during the second 8 weeks. This additive “dosing” model where the immediate group received “2 doses” in the first 8 weeks while the delayed-attention group got “1 dose” initially and “1 dose” during weeks 8-16 was evaluated using generalized linear modeling on caregiver-reported anxiety and burden levels over time. Both immediate and delayed-attention groups reported 1) increased respite time, 2) increased respite satisfaction, and 3) felt that they were better caregivers because of respite. At 8 weeks, the immediate group did not change in anxiety while the delayed group worsened (p < 0.001). At 16 weeks, the groups were similar in their anxiety levels. By the 20-week follow-up period, when neither group had access to TLC, both groups were worsening in their anxiety. Caregiver burden worsened at 16 weeks for the immediate group. TLC shows potential as an intervention model to improve respite quality and minimize increases in anxiety and burden over time. Intervention delivery that provides additional features or instructions after the initial orientation may keep participants more engaged and result in better caregiver outcomes over time, compared to providing the full set of online resources all at once.

Introduction: The term “post-traumatic growth” describes positive outcomes that accrue from the struggle with highly challenging life circumstances. The purpose of this study is to describe post-traumatic growth accruing from experience with vision loss caused by age-related macular degeneration (AMD) and to identify the relationships between depression, cognitive processing, social support, and post-traumatic growth. Methods: Individuals with vision loss caused by AMD completed an interviewer-administered composite questionnaire to identify elements of Tedeschi and Calhoun’s theoretical model of the process of posttraumatic growth, including measures of distress (depression), intrusive and deliberate rumination (cognitive processing), and social support (quality and quantity of social ties). Relationships were examined using path analysis. Results: Eighty-nine participants completed the questionnaire (mean age = 85.3 years, range = 74–98 years). All paths, including from depression to social support (β = –.363, p < .001), from social support to deliberate rumination (β = .233; p ≤ .01), and from intrusive rumination to deliberate rumination (β = .514, p < .01), were significant and consistent with the posttraumatic growth theoretical model. Deliberate rumination had a significant direct path to post-traumatic growth (β = .38, p = .001). Discussion: The findings may illuminate elements of the process of post-traumatic growth among those with AMD. We found that as social support increased, depression decreased. Increased social support seemed to encourage positive deliberate rumination, which led directly to post-traumatic growth. Although intrusive rumination is often associated with negative outcomes, the model demonstrates that it also stimulates engagement in deliberate attempts to process one’s experience. Deliberate cognitive processing is a direct precursor to post-traumatic growth. Implications for Practitioners: A focus on the process of growth and thriving can offer a broader view of the experience of living with vision loss. Interventions that foster post-traumatic growth among those with AMD should focus on enhancing social support and facilitating deliberate cognitive processing.

Abstract Hospice services can provide patient stabilization and improved quality of life, making the patient ineligible for continued hospice. Using focus groups and in-depth interviews, we explored how patients, families, and hospice staff experience, anticipate, and cope with “live discharge” from hospice. Nurses and administrators tried to prepare families for the possibility and unsettling reality of live discharge, yet the aides who worked most closely with families remained unaware of regulations dictating an impending live discharge. Reactions of families ranged from excitement, when patient was selected for clinical trial, to more common expressions of frustration, as they lost access to the staff, coordinated services, and medications only covered under the Medicare hospice benefit. Families also reported relationship stressors and decisional uncertainty associated with longer than expected patient life. Families still needed and wanted hospice services, with most agreeing they would return to hospice after the patient declined and became eligible again.

Study aims: 1) To characterize distinct profiles of cancer caregivers' physical and mental health during the end-of -life caregiving period; 2) to identify the background and antecedent factors associated with the distinct profiles of caregivers; 3) to determine the relevance of caregiver profiles to the risk for developing prolonged grief symptoms. Design & methods: This study was a secondary analysis of spouses/partners (n = 198) who participated in the Cancer Caregiver Study. Latent profile mixture modeling was used to characterize caregiver health profiles from data collected prior to their spouse's death. Regression analyses were used to determine the impact of caregiver health profiles on the risk of developing prolonged grief symptoms (PG-13 scale). Results: Two health profiles were identified, one of which was comprised of a minority of caregivers (n = 49; 25%) who exhibited higher anxiety and depressive symptoms, greater health impact from caregiving, more self -reported health problems, and greater difficulty meeting physical demands of daily activities. Caregivers who were observed in this poorer health profile had significantly lower levels of active coping (p < 0.001) in adjusted models. Additionally, according to subsequent bereavement data, caregivers' preloss health profile was a significant predictor of developing prolonged grief symptoms (p = 0.018), controlling for caregivers' age (p = 0.040) and amount of active coping (p = 0.049), and there was a mediating effect of caregiver health on the relationship between active coping and prolonged grief symptoms. Conclusions: Caregiving and bereavement should not be considered separately; caregivers adapt to bereavement with the resources and coping attained throughout the life course, culminating in the experience of providing end-of-life care. Interventions aimed at supporting caregivers and bereaved persons should focus on maintaining physical and mental health during stressful life transitions, and especially during the period in which they are providing care to a spouse at end-of-life.

Abstract This mixed method study describes posttraumatic growth (PTG) accruing form experience with vision loss caused by severe age related macular degeneration (AMD) and explores relationships between depression, social support, and cognitive processing, on the path to PTG. Research describing the psychological and social issues surrounding AMD has focused on negative outcomes. However, learning from highly challenging experiences, such as vision loss, can offer benefits. In this study, these included an increased sense of personal strength, increased spirituality, and empathy for others (all domains of PTG). 89 participants with severe vision loss (mean age = 85.3 years, age range = 74–98 years) completed the interviewer-administered composite questionnaire, which identified elements of Tedeschi and Calhoun’s model of PTG. Relationships between variables were examined using path analysis. Findings were contextualized with data from 15 qualitative interviews. Findings underscored the importance of supportive others and deliberate cognitive processing in the path to PTG.

According to Rosenthal’s expectancy effect, our conscious and unconscious attitudes and expectations may impact the behaviors of those around us. A loss-focused paradigm may affect understanding of the potential of individuals with age-related macular degeneration (AMD), their self-expectations, and their outcomes. Thus, we undertook a scoping review according to the five-stage framework proposed by Arksey and O’Malley (2005). The purpose was to provide a comprehensive overview of the relevant research related to how researchers study and report the effects of AMD on individuals, families, caregivers, and communities. The review links findings to negative perceptions of blindness, including the hierarchy of sight. Findings are discussed in the context of Rosenthal’s expectancy effect. Gaps in the literature are identified, with recommendations for future research. Results indicate that there is a strong negative bias and loss focus in the existing literature. Scientific inquiry into the psychological, health, and social issues surrounding AMD has focused on its negative outcomes. This body of literature has emerged out of a sociocultural environment that may have influenced the questions asked about vision loss and the outcomes expected. This could affect research findings and patient outcomes. Reframing expected outcomes from the struggle with blindness may include investigating positive outcomes, such as posttraumatic growth (PTG). The positive influence of low-vision rehabilitation and blindness training should not be ignored. “One of the most devastating things that can happen to any human being is to be trapped in the prison of low expectations.” (Omvig, 2004)

Past studies examining the relationship between preparedness for loss and bereavement outcomes among caregivers of spouses/partners with life-limiting illness did not adequately account for preloss caregiver attributes that could potentially confound the relationship. Using a sample of spouse/partner cancer caregivers (N = 226), we examined how preloss caregiver attributes were associated with how prepared one felt for loss and their role in the relationship between preparedness and later bereavement outcomes. Nearly half reported they were not emotionally prepared, and 35% were not prepared for the practical challenges associated with the loss. Although attributes such as depression, anxiety, competence in daily activities, and financial adequacy were associated with both preparedness and bereavement outcomes, regression analyses revealed that preparedness remained the strongest predictor in all models. We suggest that early interventions enhancing caregivers' preparedness for loss may hold considerable promise for improved bereavement outcome.

Background and Purpose: The impact of dementia-related stressors and strains have been examined for their potential to threaten the well-being of either the person with dementia or the family care partner, but rarely have studies considered the dyadic nature of well-being in dementia. The purpose of this study was to examine the dyadic effects of multiple dimensions of strain on the well-being of dementia care dyads. Methods: Using multilevel modeling to account for the inter-relatedness of individual well-being within dementia care dyads, we examined cross-sectional responses collected from 42 dyads comprised of a hospitalized patient diagnosed with a primary progressive dementia (PWD) and their family care partner (CP). Both PWDs and CPs self-reported on their own well-being using measures of quality of life (QOL-Alzheimer's Disease scale) and depressive symptoms (Center for Epidemiological Studies Depression Scale). Results: In adjusted models, the PWD's well-being (higher QOL and lower depressive symptoms) was associated with significantly less strain in the dyad's relationship. The CP's well-being was associated with significantly less care-related strain and (for QOL scale) less relationship strain. Conclusions: Understanding the impact of dementia on the well-being of PWDs or CPs may require an assessment of both members of the dementia care dyad in order to gain a complete picture of how dementia-related stressors and strains impact individual well-being. These results underscore the need to assess and manage dementia-related strain as a multi-dimensional construct that may include strain related to the progression of the disease, strain from providing care, and strain on the dyad's relationship quality.

Objective Family caregivers of cancer hospice patients likely benefit from clinician provision of verbal support and from expression of positive emotions. Our aim was to identify the effects of hospice nurse supportive communication as well as caregiver-nurse exchange of positive emotions on family caregiver depression during bereavement. Methods This prospective, observational longitudinal study included hospice nurses (N = 58) and family caregivers of cancer patients (N = 101) recruited from 10 hospice agencies in the United States. Digitally recorded nurse home visit conversations were coded using Roter interaction analysis system to capture emotion-focused caregiver-nurse communication and supportive nurse responses. Caregivers completed the Hospital Anxiety and Depression Scale Anxiety Subscale and Geriatric Depression Scale-Short Form at study enrollment and at 2, 6, and 12 months after patient death. Results Caregivers had moderate levels of depression at study enrollment and throughout bereavement. Multilevel modeling revealed that caregiver positive emotion communication and nurse emotional response communication are associated with caregiver depression in bereavement. There was no significant association between caregiver distress communication and depression in bereavement. Conclusions This is the first study to demonstrate that communication demonstrating emotional expression between cancer spouse caregivers and nurses during home hospice may have implications for caregiver depression up to a year after patient death. Our findings may help identify caregivers who may be coping well in the short term but may struggle more over time.

BACKGROUND AND OBJECTIVES:Persons with dementia (PWDs) often place greater importance on their care values (i.e., maintaining autonomy and social relations, choosing caregivers, avoiding being a burden) than family caregivers (CGs) perceive, which can detract from dementia care planning (e.g., care arrangements or surrogate decisions). Notable variability has been found across family care dyads (PWD and CG) in their perceptions of care values, suggesting that there may be multiple patterns of perception. The purpose of this study was to characterize distinct patterns of perception of care values in family care dyads.DESIGN AND METHODS:Using cross-sectional data from 228 community-dwelling family care dyads, we quantified dyads' average perceptions and incongruence in perceptions of the importance of everyday care values using multilevel modeling. These scores were then used in a latent class analysis to identify distinct patterns of perception, with the dyad as the unit of analysis.RESULTS:Two distinct patterns of care value perception were identified. 25% of dyads were labeled as "CG underestimating" due to lower average estimations of the importance of PWDs' care values, and a significant amount of dyadic incongruence. Underestimating dyads were characterized by a confirmed diagnosis of dementia, lower cognitive function, and younger age in PWDs, and higher relationship strain in the dyad.IMPLICATIONS:Care dyads that fall into an underestimating pattern may be at greater risk for inadequate dementia care planning. Interventions to improve care planning in this higher-risk group may include care values identification with the PWD, strategies for alleviating relationship strain, early-stage planning, and disease education.

Background and Objectives To examine the primary and secondary outcomes of a theory-driven group bereavement intervention for widowed older adults through a cluster-randomized controlled trial. Research Designs and Methods Twelve community centers providing health and social services for elderly people were randomly assigned to the experimental condition, the dual-process bereavement group intervention-Chinese (DPBGI-C) and to the control condition, the loss-oriented bereavement group intervention-Chinese (LOBGI-C). Both interventions comprised weekly, 2-hr sessions for 7 weeks followed by a 4-hr outing in the eighth week. Of 215 widowed older adults contacted and assessed, 125 eligible participants were interviewed three times-preintervention, postintervention, and at a 16-week follow-up-to assess complicated grief symptoms, anxiety, depression, loneliness, and social support. Results Using intention-to-treat analysis, both interventions produced improvements in grief, depression, and social support, but effect sizes were larger with the DPBGI-C. The participants in the DPBGI-C condition also reported reduced anxiety, emotional loneliness, and social loneliness, whereas those in the LOBGI-C condition did not. There were interactions between intervention type and time with respect to grief, anxiety, emotional loneliness, and social loneliness. Discussion and Implications Although traditional LOBGI-C can help to reduce grief and depression in bereaved older adults, the DPBGI-C was found to be superior as it had a greater and more extensive impact on outcomes. This is the first study of the effectiveness of this evidence-based, theory-driven intervention for widowed Chinese older adults and has implications for theory building and practice.