End-of-life doulas: A systematic integrative review and redirection.

BACKGROUND AND OBJECTIVES: End-of-life doulas (EOLD) are an emerging role providing non-medical support and advocacy for the dying and their families. Research about EOLD is new and currently highlights a need for more clarity in role definition and application. This review aims to comprehensively analyze existing knowledge regarding EOLD and their role in end-of-life care. RESEARCH DESIGN AND METHODS: A systematic and comprehensive search of nine bibliographic databases identified all published academic articles related to EOLD (as named, self-identified, and/or trained) research from inception to June 2023. This review utilized an integrative approach and textual narrative synthesis to summarize the existing body of research findings related to EOLD. RESULTS: Twenty-five articles were identified, representing multiple disciplines including health and medicine, public health, social/behavioral sciences, and humanities. Research on EOLD has rapidly increased in recent years and is showing signs of maturation. The review focuses specifically on summarizing the breadth and depth of identified research on EOLD and critically analyzes emergent themes from the review: Application, Perception, Identity, and Future Research Directions. DISCUSSION AND IMPLICATIONS: This review provides the most comprehensive review of the research literature on EOLD to date. Thematic findings for future research directions have provided the basis of a redirected research agenda to guide the field going forward. There is still a need to clarify who EOLD are and how they are being conceptualized by multiple stakeholders. Future research must address these missing voices to fully grasp the value and unique role that EOLD contribute to EOL care.

The association of religion with advance care planning.

Personal preferences influence end-of-life (EOL) decision-making and are commonly associated with engagement in the advance care planning process. Completing an advance directive (AD) allows individuals to formally document and legally report their EOL care preferences. This study explored how two aspects of religion-personal religious beliefs and formal religion practices-may be associated with advance care planning. A national sample of healthy adults in the United States aged 50 years and older (n = 514; 74% cisgender women) completed surveys detailing their EOL preferences, advance care planning, personal religious beliefs, and formal religion practices. Using Ordinary Least Squares (OLS), we find that a higher belief in God's role at EOL was associated with a higher preference for life-prolonging measures. Using logistic regression, those with a higher belief in God's role at EOL had lower odds of AD completion. Multiple dimensions of religion should be considered when studying health care preferences and decision-making.

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.

Leveraging Existing Datasets to Advance Family Caregiving Research: Opportunities to Measure What Matters.

More than 17.7 million people in the U.S. care for older adults. Analyzing population datasets can increase our understanding of the needs of family caregivers of older adults. We reviewed 14 U.S. population-based datasets (2003-2023) including older adults' and caregivers' data to assess inclusion and measurement of 8 caregiving science domains, with a focus on whether measures were validated and/or unique variables were used. Challenges exist related to survey design, sampling, and measurement. Findings highlight the need for consistent data collection by researchers, state, tribal, local, and federal programs, for improved utility of population-based datasets for caregiving and aging research.

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.

Advance Care Planning in the Context of Dementia: Defining Concordance.

BACKGROUND AND OBJECTIVES: Individuals with dementia may require a surrogate decision maker as their disease progresses. To prepare for this potential role, dementia care partners need to develop a thorough understanding of their care recipient's end-of-life values and preferences, or care dyad advance care planning (ACP) concordance. As part of our pilot study implementing the LEAD intervention with dementia care dyads, we conducted a multimethod investigation to define care dyad ACP concordance. RESEARCH DESIGN AND METHODS: We conducted a scoping review of peer-reviewed studies published after 1991 in English focusing on care dyad ACP concordance in dementia care and included 34 articles. Concurrently, we used descriptive qualitative analysis to analyze 7 dyadic ACP conversations from a pilot study about dyadic dementia ACP. RESULTS: The scoping review demonstrated (a) no definition of care dyad ACP concordance was reported; (b) surrogate accuracy in end-of-life decisions varies widely; and (c) best practices for ACP in dementia may aid in achieving ACP concordance, but do not prioritize it as an outcome. Qualitative analysis identified 7 elements for achieving concordance: Respect/Regard; use of Clarifying Processes; Conveying Health Care Scenarios; Affirmation of Understanding; Recognizing Uncertainty; Expression of Positive Emotions; and Trust. DISCUSSION AND IMPLICATIONS: Care dyad ACP concordance occurs when care recipients and care partners both understand a care recipient's end-of-life values, understand the end-of-life preferences informed by those values, and the care partner expresses a willingness to accomplish the care recipient's wishes to the best of their ability. ACP concordance can be further operationalized for research and clinical care.

Mortality risk following end-of-life caregiving: A population-based analysis of hospice users and their families.

Experiencing the death of a family member and providing end-of-life caregiving can be stressful on families - this is well-documented in both the caregiving and bereavement literatures. Adopting a linked-lived theoretical perspective, exposure to the death and dying of one family member could be conceptualized as a significant life stressor that produces short and long-term health consequences for surviving family members. This study uses familial-linked administrative records from the Utah Population Database to assess how variations in family hospice experiences affect mortality risk for surviving spouses and children. A cohort of hospice decedents living in Utah between 1998 and 2016 linked to their spouses and adult children (n = 37,271 pairs) provides an ideal study population because 1) hospice typically involves family members in the planning and delivery of end-of-life care, and 2) hospice admission represents a conscious awareness and acknowledgment that the decedent is entering an end-of-life experience. Thus, hospice duration (measured as the time between admission and death) is a precise measure of the family's exposure to an end-of-life stressor. Linking medical records, vital statistics, and other administrative microdata to describe decedent-kin pairs, event-history models assessed how hospice duration and characteristics of the family, including familial network size and coresidence with the decedent, were associated with long-term mortality risk of surviving daughters, sons, wives (widows), and husbands (widowers). Longer hospice duration increased mortality risk for daughters and husbands, but not sons or wives. Having other family members in the state was protective, and living in the same household as the decedent prior to death was a risk factor for sons. We conclude that relationship type and sex likely modify the how of end-of-life stressors (i.e., potential caregiving demands and bereavement experiences) affect health because of normative gender roles. Furthermore, exposure to dementia deaths may be particularly stressful, especially for women.

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.

Family caregiver experiences and needs across health conditions, relationships, and the lifespan: a Qualitative analysis.

PURPOSE: The purpose of this study was to understand the lived experiences of family caregivers who provide care to individuals across a broad range of ages, caregiving relationships, and health conditions and/or disabilities. Family caregiver research is typically siloed by health condition or by caregiving relationship, leaving gaps in understanding similarities and differences among caregivers. METHODS: We hosted three virtual focus groups with diverse family caregivers (n = 26) caring for an individual with a long-term disability and/or health condition(s). We conducted a qualitative thematic analysis using an iterative, inductive process. RESULTS: Participants primarily expressed shared experiences, despite having unique caregiving situations. We identified themes among a) caregiver experiences: Trying to Do It All, Balancing Complex Emotions, Managing Expectations, and Adjusting to Changes Over Time and b) caregiver needs: Longing for Breaks and Self-Care; Lacking Help, Support and Resources; and Desiring Understanding and Recognition. CONCLUSIONS: These findings emphasize that many elements of the caregiving experience transcend care recipient age, condition, and relationship and are applicable to clinicians, researchers, and policy makers. The evidence of shared caregiver experiences can guide efficiencies in policy and practice (e.g., pooling of existing resources, expansion of interventions) to meet the needs of a broader population of caregivers.

Promoting Advance Care Planning for Persons with Dementia: Study Protocol for the LEAD (Life-Planning in Early Alzheimer's and Other Dementias) Clinical Trial.

Due to the insidious progression of Alzheimer's disease and related dementias (ADRD), surrogate decision-makers typically make medical and long-term-care decisions for a care recipient, most often a family care partner. Unfortunately, many care recipient/care partner dyads have failed to engage in advance care planning or have lost the opportunity to do so due to the cognitive decline of the care recipient. To address this need, our team created a validated dementia-focused advance care planning tool known as the LEAD Guide (Life-Planning in Early Alzheimer's and Other Dementias). With funding from the National Alzheimer's Association and in consultation with our community advisory board, we developed a preliminary web-based intervention. This intervention integrates the LEAD Guide with self-paced educational modules that lead dyads through conversations and dementia-focused advance care planning processes. In this concept paper, we describe the aims of our funded R01 clinical trial (National Institute on Aging), where we aim to refine our preliminary web-based platform for use in a 5-month mixed-method NIH Stage-1 behavioral intervention. Using a sample of diverse community-based ADRD dyads (n = 60), we aim to: 1) describe the acceptability, usability, and feasibility of the intervention, 2) assess the initial efficacy of the intervention on the primary outcome (decision-making self-efficacy), and secondary outcomes (relationship quality, subjective well-being, anxiety) as perceived by both the care recipient and the care partner, and 3) examine advance care planning congruence as a mechanism of action. The LEAD clinical trial addresses public health challenges by guiding and supporting families through challenging advance care planning conversations, facilitating the transfer of knowledge regarding care preferences and values from the care recipient to the care partner, with the ultimate goal of improving the quality of life for both individuals with ADRD and their care partners.

Disparities and determinants of place of death: Insights from the Utah Population Database.

To better understand determinants and potential disparities in end of life, we model decedents' place of death with explanatory variables describing familial, social, and economic resources. A retrospective cohort of 204,041 decedents and their family members are drawn from the Utah Population Database family caregiving dataset. Using multinomial regression, we model place of death, categorized as at home, in a hospital, in another location, or unknown. The model includes family relationship variables, sex, race and ethnicity, and a socioeconomic status score, with control variables for age at death and death year. We identified the effect of a family network of multiple caregivers, with 3+ daughters decreasing odds of a hospital death by 17 percent (OR: 0.83 [0.79, 0.87], p < 0.001). Place of death also varies significantly by race and ethnicity, with most nonwhite groups more likely to die in a hospital. These determinants may contribute to disparities in end of life.

Health Disparities in Advance Care Planning: Development of a Spanish-Language LEAD Guide (Life-Planning in Early Alzheimer's and Other Dementias).

Introduction: The LEAD (Life-Planning in Early Alzheimer's and Other Dementias) Guide is an advance care planning (ACP) tool for use within the context of dementia. To meet the needs of diverse communities, we sought to create a culturally sensitive and translated Latin American Spanish version of the guide. Methods: First, the guide was translated into Spanish. Second, we conducted forward and backward translations. Third, focus groups with Spanish-speaking Latino adults were held (healthy adults and current or previous dementia caregivers). Results: Descriptive analysis revealed three domains regarding the Latin American Spanish version of the LEAD Guide (LA LEAD Guide): (1) Family Dynamics (e.g., preventing family conflict), (2) Cultural Expectations (e.g., familial caregiving responsibility), and (3) Health Literacy (e.g., lack of knowledge about ACP). Discussion: This process created the Latin American LEAD Guide as a culturally and linguistically appropriate and acceptable ACP tool for older Latino adults. Health Equity Implications: The availability of culturally sensitive and Spanish ACP resources could facilitate greater health care access and research participation among Latino Americans by diminishing the linguistic and health literacy barriers for those not comfortably proficient in English.

Online interventions to support family caregivers: The value of community-engaged research practices.

Family members provide significant amounts of unpaid care to aging, chronically ill, and disabled persons in their homes. They often do this with little education or support and commonly report feeling overwhelmed and stressed. Providing education and support to family caregivers has demonstrated benefit on the health and well-being of the caregiver and care-receiver. However, because "caregiver" is not a reimbursable category in health care, caregiver interventions need to be delivered in a cost-efficient way. Technology-delivered and self-administered intervention models are increasingly being recommended as a pragmatic way to support aging families in our communities. This paper outlines the redevelopment of two behavioral interventions to an exclusively online delivery. This case-study analysis presents a model for community-engaged intervention research practices, which have the potential to create interventions that are more sustainable and more likely to be implemented than those designed and tested with more traditional research methodology.

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.

Evaluation of Family Characteristics and Multiple Hospitalizations at the End of Life: Evidence from the Utah Population Database.

Background: Scant research has examined the relationship between family characteristics and end-of-life (EOL) outcomes despite the importance of family at the EOL. Objectives: This study examined factors associated with the size and composition of family relationships on multiple EOL hospitalizations. Design: Retrospective analysis of the Utah Population Database, a statewide population database using linked administrative records. Setting/subjects: We identified adults who died of natural causes in Utah, United States (n = 216,913) between 1998 and 2016 and identified adult first-degree family members (n = 743,874; spouses = 13.2%; parents = 3.6%; children = 51.7%; siblings = 31.5%). Measurements: We compared demographic, socioeconomic, and death characteristics of decedents with and without first-degree family. Using logistic regression models adjusting for sex, age, race/ethnicity, marital status, comorbidity, and causes of death, we examined the association of first-degree family size and composition, on multiple hospitalizations in the last six months of life. Results: Among decedents without documented first-degree family members in Utah (16.0%), 57.7% were female and 7 in 10 were older than 70 years. Nonmarried (aOR = 0.90, 95% CI = 0.88-0.92) decedents and decedents with children (aOR = 0.97, 95% CI = 0.94-0.99) were less likely to have multiple EOL hospitalizations. Family size was not associated with multiple EOL hospitalizations. Conclusions: First-degree family characteristics vary at the EOL. EOL care utilization may be influenced by family characteristics-in particular, presence of a spouse. Future studies should explore how the quality of family networks, as well as extended family, impacts other EOL characteristics such as hospice and palliative care use to better understand the EOL care experience.

A Limited Opportunity: COVID-19 and Promotion of Advance Care Planning.

Background: Little is known about how COVID-19 has influenced the role of family caregivers in advance care planning (ACP). Objectives: To explore the experiences of family caregivers and ACP in the United States during the COVID-19 pandemic. Design: Exploratory sequential mixed-methods design of caregiver characteristics and pandemic response to ACP. Settings/Subjects: Family caregivers of care recipients with varied caregiving needs (dementia, mental illness, etc.). Measurements: Quantitative survey was done of fixed-choice questions of 82 caregivers. Semistructured qualitative telephone interviews were performed of a subsample of participants (n = 28). Results: Some (19%) of family caregivers revisited or updated advance directives of care recipients and/or had some type of contingency plan (33%) if they were to become ill. We identified three barriers caregivers faced during the pandemic that may have limited their engagement with ACP. Conclusions: Family caregivers need education regarding ACP and specific resources that can guide and support them through the process of ACP, for both themselves and care recipients.

"You Feel Very Isolated": Effects of COVID-19 Pandemic on Caregiver Social Connections.

One in five individuals in the United States provides care and support to ill, disabled, and aging family members in the home, leading to feelings of burden, stress, and poor health and well-being. Social support represents an important buffer for family caregivers that allows them to feel less isolated and more positive about their caregiving role. This sequential mixed-methods study aimed to examine the effect of the COVID-19 pandemic on family caregivers' social connections. Eighty-two caregivers completed a web-based survey which comprised of fixed-choice and open-ended questions. Survey data showed that the majority of caregivers (83%) reported an increase in stress and feeling lonely (77%) during the pandemic. Qualitative interviews with a subsample of caregivers (n=27) further explored social connections during the pandemic. Three themes echoed the quantitative findings and centered around defining boundaries, intentionality in social interactions, and loss of social resources. Although caregivers were often strained by new or increased caregiving demands, many experienced positive changes such as feeling a deeper connection with the care-recipient. Findings from this study highlight the need for further consideration of the impact of social isolation on the well-being of caregivers.

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.