Evaluating the Efficacy of Time for Living and Caring: An Online Intervention to Support Dementia Caregivers' Use of Respite.

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.

Comparison of recruitment methodologies for clinical trials: Results from the time for living and caring (TLC) intervention study.

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.

Using Digital Inequality Framework to Evaluate a Technology-Delivered Intervention for Caregivers: Age, Education, and Computer Proficiency.

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.

Essentials to Improve the Effectiveness of Healthy Aging Programming: Consideration of Social Determinants and Utilization of a Theoretical Model.

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.

Maximizing the Benefit of Respite for Dementia Caregivers: A Study Protocol Describing the Development & Evaluation of the Time for Living & Caring (TLC) Intervention.

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.

Live hospice discharge: Experiences of families, and hospice staff.

OBJECTIVE: To examine live hospice discharge prevalence and experiences of families and hospice staff. Hospice eligibility is based on a cancer model where decline and death are predicable. Decline is less predictable for diagnoses such as dementia, frequently resulting in involuntary live hospice discharge. METHODS: A mixed-method integration of hospice 2013-17 admission/discharge data, 5 family interviews, hospice discipline-specific focus groups (3 aides, 2 nurses, 1 administrator interview) and a discipline-combined focus group (all 6 staff; each staff participant engaged in two data collection experiences). RESULTS: 5648 hospice admissions occurred between 2013-17; 795 patients experienced live discharge. The most prevalent admitting diagnosis was cancer, the most prevalent live discharge diagnosis was dementia. Family caregiver themes were Attitude and experience with hospice, Discharge experience, and Continued need/desire for hospice following discharge. Staff themes were Discharge circumstances, Regulatory guidelines, and Changing practice to meet regulatory guidelines. CONCLUSION: Involuntary live hospice discharge precludes patient-centered care due to policy constraints, especially for those with noncancer diagnoses. Families and staff noted the paradox of beneficial hospice care, yet this care resulted in ineligibility for continued hospice services. PRACTICE IMPLICATIONS: Transparent, patient-family-staff communication (including CNAs) facilitates hospice live discharge planning. Hospice service eligibility policy changes are needed.

Health profiles of spouse caregivers: The role of active coping and the risk for developing prolonged grief symptoms.

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.

Communication of emotion in home hospice cancer care: Implications for spouse caregiver depression into bereavement.

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.

Well-being in dementia: a cross-sectional dyadic study of the impact of multiple dimensions of strain on persons living with dementia and their family care partners.

ABSTRACTBackground 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.

Cancer Caregivers' Preparedness for Loss and Bereavement Outcomes: Do Preloss Caregiver Attributes Matter?

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.

Care Values in Dementia: Patterns of Perception and Incongruence Among Family Care Dyads.

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.

Dual-Process Bereavement Group Intervention (DPBGI) for Widowed Older Adults.

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.

Conducting Research With Older Adults With Vision Impairment: Lessons Learned and Recommended Best Practices.

Older adults are underrepresented in research, and a potential barrier to their participation may be the increasing prevalence of vision loss and lack of accommodation for this challenge. Although vision loss may initially pose a challenge to research participation, its effects can be mitigated with early, in-depth planning. For example, recruitment is more inclusive when best practices identified in the literature are used in the preparation of written materials to reduce glare and improve readability and legibility. Alternatives to obtaining written consent may be used. Interviews are made accessible when done verbally and the author uses cueing and good diction. Remaining vision can be optimized through seating arrangement, lighting, and magnification. Challenges encountered and resolved in a recent study with severely visually impaired older adults are offered here as exemplars. Methodology for identifying and recruiting a sample comprised exclusively of visually impaired older adults is also offered herein.

Distress and Supportive Care Needs of Ethnically Diverse Older Adults With Advanced or Recurrent Cancer.

OBJECTIVES: To assess the prevalence of supportive care needs (SCNs) and distress and to describe relationships among these and patient characteristics for ethnically diverse older adults with advanced or recurrent cancer. SAMPLE & SETTING: Cross-sectional survey in five outpatient oncology clinics in an urban academic medical center involving 100 participants receiving cancer care in an economically challenged community. METHODS & VARIABLES: The supportive care framework for cancer care guided this study, and participants completed the SCN Survey Short Form 34 and the Distress Thermometer. Study variables are cancer diagnosis, gender, helping to raise children, number of comorbid diseases, race or ethnicity, treatment status, and zip code. RESULTS: Clinically meaningful distress was found in about a third of patients. Distress was not affected by race or ethnicity. Many ethnically diverse older patients with advanced or recurrent cancer report distress and SCNs; those with high distress are more likely to report multiple SCNs. IMPLICATIONS FOR NURSING: Nursing assessment of patient SCNs and distress is integral to establishing individualized patient-centered care plans and to delivering optimal care.

End-of-Life Education and Discussions With Assisted Living Certified Nursing Assistants.

In previous work, the current researchers examined attitudes and experiences of certified nursing assistants (CNAs) providing end-of-life (EOL) care in an assisted living facility (ALF). Results showed that 70% of participating CNAs felt unprepared to provide EOL care, largely due to not having received prior EOL care education within their schools or workplaces. Therefore, the goal of the current study was to implement and evaluate EOL and postmortem education to ALF CNAs. A focus group of 14 CNAs within an ALF was provided EOL education pertaining to the physiological and psychological changes observed in patients nearing EOL and postmortem care. Immediately following training, CNAs participated in a 30-minute focus group in which they discussed their experiences and educational needs regarding EOL care. Responses were recorded, transcribed, and analyzed for common themes using descriptive qualitative inquiry. All participants reported that CNA programs need to place greater emphasis on teaching EOL care, and 80% desired continuing education on EOL care through their employers. There is a need for CNAs to receive EOL care education to understand the psychological and physical signs and symptoms associated with the dying process to provide best practices in postmortem care. [Journal of Gerontological Nursing, 44(6), 41-48.].

Spouse cancer caregivers' burden and distress at entry to home hospice: The role of relationship quality.

High-quality relationships may be protective for family caregivers. This study focuses on relationship quality categories (supportive and ambivalent) in spouse caregivers in cancer home hospice. The goals of this article are to, first, describe relationship quality categories among end-of-life caregivers and, second, test the effects of relationship quality categories on caregiver burden and distress within a stress process model. Using questionnaire data collected at entry to home hospice, we found relationship quality categories were proportionally similar to those seen in noncaregiver older adults. Relationship quality significantly predicted caregiver burden, which completely mediated the relationship between caregiver relationship quality and distress. Caregivers whose social contexts place them at risk for greater distress may benefit from increased clinical attention or intervention.

"One Size Doesn't Fit All" - Partners in Hospice Care, an Individualized Approach to Bereavement Intervention.

We concluded in a recent study that a "one size fits all" approach typical of group interventions often does not adequately accommodate the range of situations, life experiences, and current needs of participants. We describe how this limitation informed the design and implementation of an individually-delivered intervention format more specifically tailored to the unique needs of each bereaved person. The intervention comprises one of three interrelated studies within Partners in Hospice Care (PHC), which examines the trajectory from end-of-life care through bereavement among cancer caregivers using hospice. The PHC intervention employs an initial needs assessment in order to tailor the session content, delivery, and sequencing to the most pressing, yet highly diverse needs of the bereaved spouses/partners. Although an individually-delivered format has its own challenges, these can be effectively addressed through standardized interventionist training, regular communication among staff, as well as a flexible approach toward participants' preferences and circumstances.

Concept Analysis: Alzheimer's Caregiver Stress.

AIM: The aim of this article was to analyze the concept of caregiver stress in the context of caring for a person with Alzheimer's disease and related dementias. BACKGROUND: Currently, there are more than 15 million unpaid caregivers for persons suffering from Alzheimer's disease and related dementias. This unpaid care can be stressful for caregivers due to the chronic nature of the disease process, as well as other factors. METHOD: The paper incorporates the modified method of Wilson's concept analysis procedure to analyze the concept of caregiver stress. DATA SOURCES: A review of the literature was undertaken using the Cumulative Index to Nursing and Allied Health Literature, Google Scholar, and PubMed. RESULTS: A theoretical definition of caregiver stress is provided, and the defining attributes, related concepts, antecedents, and consequences of caregiver stress are proposed, and case studies are presented. CONCLUSIONS: The analysis demonstrates that caregiver stress is the unequal exchange of assistance among people who stand in close relationship to one another, which results in emotional and physical stress on the caregiver. Implications for future nursing research and practice conclude the paper.

Missed Opportunity: Hospice Care and the Family.

A typical mission statement of hospice services is to provide quality, compassionate care to those with terminal illness and to support families through caregiving and bereavement. This study explored the ways that bereavement needs of caregivers, either predeath or postdeath of their spouse/partner, were addressed using qualitative retrospective phone interviews with 19 caregivers whose spouse/partner was enrolled in hospice care for cancer. Overall, participants expressed high satisfaction with hospice care, most often noting a high satisfaction with the quality of care provided to their spouse/partner. During the predeath phase, caregivers recalled being so focused on their spouse/partner's needs that they rarely spoke with hospice staff about their own personal needs and emotions. Participants said that bereavement counseling occurred primarily after the death of the spouse/partner, in the form of generic pamphlets or phone calls from someone they had not met during prior interactions with hospice staff. These findings suggest that caregivers' high satisfaction with hospice may be more associated with the quality of care provided to the spouse/partner than with bereavement support they received. Our findings illustrated a potential missed opportunity for hospices to address the family-oriented goals that are commonly put forward in hospice mission statements.

Factors that influence physical function and emotional well-being among Medicare-Medicaid enrollees.

Dually enrolled Medicare-Medicaid older adults are a vulnerable population. We tested House's Conceptual Framework for Understanding Social Inequalities in Health and Aging in Medicare-Medicaid enrollees by examining the extent to which disparities indicators, which included race, age, gender, neighborhood poverty, education, income, exercise (e.g., walking), and physical activity (e.g., housework) influence physical function and emotional well-being. This secondary analysis included 337 Black (31%) and White (69%) older Medicare-Medicaid enrollees. Using path analysis, we determined that race, neighborhood poverty, education, and income did not influence physical function or emotional well-being. However, physical activity (e.g., housework) was associated with an increased self-report of physical function and emotional well-being of ß = .23, p < .001; ß = .17, p < .01, respectively. Future studies of factors that influence physical function and emotional well-being in this population should take into account health status indicators such as allostatic load, comorbidity, and perceived racism/discrimination.