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In the current study, we conducted one-on-one interviews with primary care providers (PCPs) and family care partners (FCPs) and held focus groups with interdisciplinary adult day service center (ADSC) staff to understand the perspectives of care providers across community settings regarding early warning signs of acute illnesses in persons living with dementia (PLWD). We used content analysis to analyze qualitative data. Warning signs of acute illnesses in PLWD fell into one of five categories, including new onset changes in (a) physical functions, (b) moods or behaviors (psychological), (c) social interactions, (d) speech, or (e) appearance. FCPs ( n = 11) focused on physical changes, whereas ADSC staff ( n = 33) emphasized changes in speech and social interactions in addition to the other categories. Although ADSC staff and PCPs ( n = 22) focused on changes in functions and moods, each group described these changes differently. ADSC staff possess rich information that can be used to identify acute changes in PLWD and describe a broader range of warning signs compared to PCPs and FCPs. FCPs may benefit from further training in distinguishing between normal disease progression and acute illness. Future research should focus on the implementation of standardized tools across community-based care providers to simplify the identification and reporting of early warning signs in PLWD. [ Journal of Psychosocial Nursing and Mental Health Services, 61 (5), 35–43.]

Despite the significant stress of family caregiving, caregivers’ needs and risks are often overlooked in healthcare settings. This study examined the factors associated with primary care physicians’ perceived responsibility to identify and address caregiver needs and risks. Using a national random sample of U.S. primary care physicians ( N = 106), multivariable logistic regression analyses were conducted to examine associations of physicians’ perceived responsibility to assess caregivers’ needs with experiential similarity (personal experience with caregiving), structural similarity (being older and female), and secondary exposure variables (time seeing older adults in the outpatient setting). Most (76.5%) physicians felt responsible for identifying caregivers’ needs and risks. In multivariable models, physicians who had personal experience with caregiving were four times more likely than those without it to feel responsible for identifying caregivers’ needs and risks and assessing caregivers’ mental health concerns. Thus, physicians may benefit from educational interventions that immerse them in caregivers’ lived experiences.

To examine and compare health care provider perceptions for integrating family caregivers into patient encounters and other processes of care by medical specialty.Data were from 19 interviews conducted in 2018, 10 with primary care or palliative care providers and nine with proceduralists or interventionists in practices located in Minnesota, Florida, and Arizona.This was a qualitative study using data collected from one-on-one, semi-structured interviews with physicians.By using purposeful "maximum variation" sampling to capture differences between primary and palliative care providers and proceduralists/interventionists, data were collected, reviewed, coded, and then analyzed using inductive content analysis with a constant comparison approach.Primary care providers described a lack of organizational and institutional resources to support caregivers. Accordingly, they were compelled to curb caregiver engagement in order to meet patients' clinical care needs within the time and workflow demands in encounters. Proceduralists and interventionists described the need to assess caregivers for suitability to provide care during intense periods of treatment. They reported having access to more formal organizational resources for supporting caregivers. Overall, providers described a paradox, where caregivers are seen as contributing value to patient encounters until they need training, education, or support to provide care, at which point they become burdensome and require more time and resources than are typically available.Results highlight how organizational constraints inhibit caregiver engagement in patient encounters and influence provider attitudes about engaging caregivers and assessing their unmet needs. Findings also provide insights into challenges across practice types for implementing state and federal laws that promote caregiver engagement.

Background Pain in older persons with dementia is both under-detected and under-managed. Family caregivers can play an important role in addressing these deficiencies by communicating their care recipient’s symptoms and behaviors to medical providers, but little is known about how caregivers and providers approach pain-related discussions in the context of dementia. The goal of this study was to explore how ambulatory care providers and family caregivers of persons with dementia view pain communication. Methods In-depth, semi-structured interviews were conducted with family caregivers ( n = 18) and healthcare providers involved in dementia care ( n = 16). Interviews focused on three specific content areas: (1) caregivers’ roles in communicating about pain in persons with dementia, (2) challenges experienced when communicating about pain in persons with dementia, and (3) strategies and recommendations for optimizing communication in this context. All interviews were audio-recorded, transcribed, and analyzed using the constant comparative method of data analysis. Results Caregivers and providers described various roles that caregivers assumed in communication processes, such as serving as historians, interpreters, and advocates. They identified two key features of problematic communication—receipt of inadequate information and interpersonal conflict about the care recipient’s pain—and articulated how ambiguity around pain and dementia, as well as preexisting beliefs and emotions, contributed to communication challenges. They also offered several suggestions to improve caregiver–provider communication processes, including the use of (1) written records to enhance the accuracy of caregivers’ reports and ensure that providers had specific information to inform symptom management and treatment plans, (2) pain scales and follow-up discussions to establish baseline data and clarify treatment recommendations, and (3) collaboration and rapport-building strategies to validate the caregivers’ contributions and maximize a team-based decision-making. Conclusion Receipt of inadequate information and interpersonal conflict are key challenges to caregiver–provider communication regarding pain in persons with dementia. Written records, pain scales, and rapport-building strategies may help to address these challenges.

Objective Older adults are commonly accompanied to routine medical visits. This study identifies challenges and explores approaches to managing patient-family interactions in primary care. Methods Semi-structured interviews were conducted with primary care clinicians and staff (N = 30) as well as older adult patients and family caregivers (N = 40). Interviews were analyzed using content analysis. Results Three major challenges to patient-family interactions were identified: navigating patient autonomy and family motivation to participate; adjudicating patient-family disagreements; and minimizing obtrusive behaviors by caregivers. Three approaches to managing patient-family interactions were identified. Collaborating involved non-judgmental listening, consensus-building, and validation of different perspectives. Dividing involved separating the patient and family member to elicit confidential information from one member of the dyad. Focusing involved re-directing the conversation to either the patient or family member while minimizing input from the other. Approaches varied by patients’ cognitive status and overall health condition. In general, patients and caregivers expressed the most positive attitudes toward collaborating and patient-directed focusing approaches. Conclusion Primary care clinicians use varied approaches to managing their interactions with patient-family dyads. Patients and caregivers generally prefer those approaches that involve collaborative rather than individual discussions. Practice implications Findings suggest the potential for the development of communication-focused interventions to promote positive clinician-patient-family interactions.

Background: Many older adults receive help from both family caregivers and home care workers. We aimed to understand family caregivers’ perspectives on home care workers. Methods: This qualitative study took place at an academic medical center in New York, N.Y. We interviewed family caregivers of community-dwelling older adults about their experiences with home care workers. We analyzed transcripts thematically. Results: We interviewed 17 family caregivers and identified four major themes: (a) home care workers provide functional and emotional support; (b) home care is logistically challenging; (c) finding the right fit between home care workers, older adults, and families is essential; and (d) home care workers and family caregivers coordinate care well beyond the initiation of home care. Conclusion: Despite its logistical challenges, home care benefits patients and family caregivers. Given the growing prevalence of caregiving, clinicians and family caregivers might benefit from training and support about working with home care workers.

Context Family caregivers (FCs) of cancer patients play a crucial role in managing their care partner’s pain, but little research has examined FCs’ specific challenges regarding the provision of pain management (PM) to cancer patients receiving palliative care. Objectives To determine the demographic and clinical characteristics of FCs who encounter challenges in PM and to elucidate the specific challenges that FCs face when managing pain for their care partner with cancer. Methods We conducted a secondary analysis of 40 interview transcripts of FCs who were caring for persons with cancer. Interviews were audio-recorded, transcribed verbatim, and analyzed using deductive thematic analysis. Results The three major identified challenges to PM for FCs of persons with cancer were: (1) communication and teamwork issues, (2) caregiver-related issues, and (3) patient-related issues. Communication and teamwork issues encompassed caregivers’ receipt of inadequate information regarding PM, and inappropriate and ineffective communication from the healthcare team. Caregiver issues pertained to caregivers’ fear and beliefs, concurrent responsibilities, and lack of pain-related knowledge and skills. Patient issues related to their own fear and beliefs, psychological and physiological well-being, adherence to medications, and reluctance to report pain. Conclusion Findings of this study have implications for future research and practice related to cancer PM in palliative care. Results suggest the need for FC training in PM as well as clear clinical practice guidelines and resources to help providers prepare, educate, and communicate with FCs regarding PM.

More than 6 million adults in the United States are affected by Alzheimer’s Disease and related dementias (ADRD), the majority of whom rely on assistance from an unpaid caregiver (family, friends). The goal of the 2021 Conference on Engaging Family and Other Unpaid Caregivers of Persons with Dementia in Healthcare Delivery, funded by the National Institute on Aging, was to establish a policy- and practice-aligned research agenda for enhancing ADRD caregiver engagement and support in healthcare settings. The Conference convened multidisciplinary thought leaders from across the United States to establish a set of actionable recommendations to advance the field. Recommendations centered on five key topics: 1) Identification and assessment of ADRD caregivers, 2) Reimbursement and financing for provider time spent on ADRD caregiver, identification, assessment, and support, 3) ADRD caregiver training and support, 4) Healthcare provider education, and 5) Technology. To support future work in each of the five priority areas, conference participants highlighted the importance of leveraging lessons from implementation science and models of equity and inclusion. Recommendations are intended to inform federal agencies and foundations about high-priority areas and motivate multidisciplinary collaborations to design care delivery systems that effectively engage and support ADRD caregivers.

Despite the negative emotional and physical consequences of caregiving, caregivers’ needs and risks are often overlooked in health care settings. This study used survey data from a national random sample of primary care physicians (N=106) to examine the factors associated with physicians’ perceived responsibility to identify caregiver needs and risks, focusing on three theoretically implicated variables: 1) experiential similarity (i.e., physicians having personal experience with caregiving), 2) structural similarity (i.e., physicians being older and female), and 3) secondary exposure to caregivers (i.e., more time seeing older patients and a higher percentage of older adults in their patient panel). Physicians in our sample consisted of 42.5% women; most of whom were white (73.6%). The majority (76.5%) agreed or strongly agreed that they were responsible for identifying caregivers’ needs and risks. Multivariable models controlling for physicians’ age and gender revealed that physicians who had personal experience with caregiving were four times more likely than those without caregiving experience to feel responsible to identify caregivers’ needs and risks (adjusted odds ratio [aOR] 3.90; 95% confidence interval [CI] 1.34-11.41) and to assess caregivers’ mental health concerns (aOR 3.58; 95% CI 1.29-9.94). Structural similarity and secondary exposure did not play significant roles in motivating physicians. Findings highlight the role of experiential similarity in physicians’ motivation to assess caregivers’ needs and risks. Future work may benefit from designing intervention programs for physicians that incorporate experiential learning activities (e.g., conversations in which caregivers share their experiences) and evaluating whether such programs enhance physicians’ sensitivity toward family caregivers.

Pain is under-detected and poorly managed in persons with dementia (PWD). Family caregivers are well situated to detect and facilitate management of pain in PWD, but they receive little guidance and training in these tasks. Our group developed the Pain Identification and Communication Toolkit (PICT), a manualized, multicomponent intervention to help caregivers recognize pain in their care recipients and communicate their observations to healthcare providers. PICT includes a) training in administering an observational pain assessment tool, b) coaching in effective pain communication, and c) building caregivers’ skills through practice. To evaluate PICT’s acceptability, feasibility, and preliminary efficacy, we conducted a pilot randomized controlled trial of N=34 caregivers (n=18 randomized to PICT; n=16 randomized to a control condition). Participants were from diverse racial and ethnic backgrounds (14% Black; 15% Hispanic; 8% Asian; 8% multiracial). Of the caregivers enrolled in the intervention group, 66.7% reported that PICT improved their confidence in identifying pain symptoms, and 83.3% reported that PICT improved their confidence in communicating pain-related concerns to providers. Retention was excellent: 100% of caregivers in the PICT group completed all intervention sessions (4 total); only 5% prematurely terminated the study (did not complete the 12-week post-assessment questionnaire). Notably, caregivers in the PICT group showed a significant improvement in confidence communicating with healthcare providers from baseline to 12-week follow-up (M=3.9 vs. M=4.4; p

The Cornell Institute for Translational Research on Aging (CITRA) Research-to-Practice Consensus Workshop Model is an evidence-based method for generating practice- and policy-informed research agendas on aging-related topics. The model aims to bridge the gap between research-based knowledge and practice-based insight by involving multidisciplinary stakeholders in all aspects of the agenda-setting process. Using the CITRA model as a guiding framework, we convened an NIA-funded Conference on Engaging Family Caregivers of Persons with Dementia in Healthcare Delivery, with the goal of generating actionable research priorities that will lead to improvements in dementia caregiver identification, assessment, and support in health and long-term care settings. Conference attendees were multidisciplinary thought leaders representing five stakeholder groups: family caregivers of persons with dementia, healthcare providers, researchers, payers, and policy advocates. This symposium will describe the CITRA model, using our caregiver conference as an example, and provide practical guidance on how to use the model to promote cross-disciplinary dialogue and integrate research, policy, and practice perspectives. The first presentation will provide an overview of the CITRA model and its 5-step method (Pillemer). Subsequent presentations will describe the model’s application to the topic of improving caregiver identification and support in care delivery (Griffin) and discuss how novel technology-based adaptations to the model helped to facilitate hybrid participation of virtual and in-person attendees (Falzarano). The final presentation will delineate the major priorities that resulted from the conference, discuss ongoing and future dissemination activities, and offer practical suggestions for leveraging the CITRA model in future consensus efforts (Riffin).

This cross-sectional study assesses the prevalence and factors associated with receipt of adequate transitional care training among caregivers of older adults undergoing posthospitalization care transition., Key Points Question Does receipt of adequate training related to managing older adults’ posthospitalization care vary by family caregiver and older adult characteristics? Findings In a cross-sectional study of 1905 caregivers assisting an older adult after hospital discharge, 59.1% reported receiving the training that they needed. Caregivers were less likely to receive the training that they needed if they were Black; experienced financial difficulty; or cared for a Black, female, or Medicaid-enrolled older adult. Meaning The findings suggest concerning disparities in caregivers’ receipt of needed training when managing posthospitalization care transitions for older adults., Importance Medicare conditions of participation require hospitals to provide training to family and unpaid caregivers when their support is necessary to enact the postdischarge care plan. However, caregivers often report feeling unprepared for this role. Objective To describe the characteristics of caregivers who assist with posthospitalization care transitions and assess the prevalence of and factors associated with receipt of adequate transitional care training. Design, Setting, and Participants This cross-sectional study analyzed data from the 2017 National Health and Aging Trends Study and its linked National Study of Caregiving, surveys of Medicare beneficiaries and their family and unpaid caregivers. The present study included family caregivers for community-living Medicare beneficiaries 65 years or older with disabilities. Data analysis was performed from June to September 2020. Main Outcomes and Measures Characteristics of family caregivers by whether they assisted during a posthospitalization care transition in the year preceding the survey interview. Unweighted frequencies and weighted percentages, as well as the results of weighted Pearson and Wald tests for differences between groups, are reported. Receipt of the training needed to manage the older adult’s posthospitalization care transition (hereafter referred to as adequate transitional care training) as a function of individual caregiver characteristics was modeled using multivariable, weighted logistic regression. Results Of 1905 family caregivers, 618 (58.9%) were 60 years or older, 1288 (63.8%) were female, and 796 (41.7%) assisted with a posthospitalization care transition. Those who assisted with a posthospitalization care transition were more likely to report experiencing financial (154 [18.3%] vs 123 [10.1%]; P

This cohort study examines the association between the level of caregiver strain and self-care behaviors among US caregivers with diabetes., Key Points Question Is there an association between caregiver strain and self-care behaviors among US caregivers with diabetes? Findings In this cohort study of 795 caregivers with diabetes, those who experienced some strain or a high level of strain had significantly decreased medication adherence compared with those who experienced less strain. Meaning The findings suggest that a high level of caregiver strain may be associated with decreased self-care behaviors among caregivers with diabetes., Importance Caregiver strain has been shown to be associated with adverse effects on caregivers’ health, particularly among those with cardiovascular disease. Less is known about the association of caregiver strain with health behaviors among caregivers with diabetes, a disease that requires a high degree of self-care. Objective To examine the association between caregiver strain and diabetes self-care among caregivers with diabetes. Design, Setting, and Participants This cohort study was conducted between July 13, 2018, and June 25, 2020, using data on 795 US caregivers aged 45 years or older with self-reported diabetes from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, which comprised 30 239 Black and White adults 45 years or older throughout the US enrolled from January 2003 to October 2007. Exposures Caregiver strain, assessed by self-report in response to the question, “How much of a mental or emotional strain is it to provide this care?” Response options were no strain, some strain, or a lot of (high) strain. Main Outcomes and Measures Diabetes self-care, which was assessed across 4 domains (Mediterranean diet adherence, physical activity, smoking status, and medication adherence), and a composite self-care score summing performance across these domains. The association between caregiver strain and diabetes self-care was examined with multivariable Poisson regression adjusting for demographic, clinical, physical and mental functioning, and caregiving covariates. Results Among the 795 caregivers with diabetes included in the study, the mean (SD) age was 63.7 (8.6) years, 469 (59.0%) were women, and 452 (56.9%) were Black individuals. Overall, 146 caregivers (18.4%) reported high caregiver strain. In unadjusted models, high caregiver strain was associated with less physical activity (prevalence ratio [PR], 0.66; 95% CI, 0.45-0.97), low medication adherence (PR, 0.80; 95% CI, 0.68-0.94), and worse self-care (PR, 0.65; 95% CI, 0.44-0.98). In adjusted models, the association between some and high caregiving strain with low medication adherence remained significant (adjusted PR: some strain, 0.88 [95% CI, 0.78-0.99]; high strain, 0.83 [95% CI, 0.69-0.99]). Conclusions and Relevance In this cohort study of US adult caregivers with diabetes, a high level of strain was associated with low medication adherence. Increased awareness of the prevalence of caregiver strain and potential ramifications on caregivers’ self-care appears to be warranted among health care professionals and caregivers.

This chapter discusses the relevance and importance of systematic identification, assessment, and support of family caregivers in health and long-term care delivery. We begin with an overview of demographic, chronic illness, and health system trends that frame the scope of and demand for families’ involvement in care delivery processes. We then discuss the concept of person- and family-centered care and how this orientation underpins the integration of family caregiver assessment and support into health and long-term care settings. Building on the family-centered care approach, we describe existing models, clinical practices, and administrative mechanisms that focus on family caregivers. Throughout this discussion, we highlight key gaps and challenges to current approaches and offer practical solutions and opportunities to promote future adoption of family caregiver assessment and support in health and long-term care.

Objectives To characterize current practices, barriers, and facilitators to assessing and addressing family caregivers' needs and risks in primary care. Design Cross-sectional, national mail-based survey. Setting American Medical Association Masterfile database. Participants U.S. primary care physicians (N = 106), including general internists (n = 44) and geriatricians (n = 62). Measurements Approaches to assessing and addressing family caregivers' needs and risks; barriers and facilitators to conducting caregiver assessments. Results Few respondents reported conducting a formal caregiver assessment using a standardized instrument in the past year (10.5%). Informal, unstructured discussions about caregivers' needs and risks were common and encompassed a range of issues, most frequently caregivers' management of patients' safety (41.0%), ability to provide assistance (40.0%), and need for support (40.0%). To address caregiver needs, most respondents endorsed referring patients to services (e.g., adult day care, home care) (69.8%), assessing the appropriateness of the patient's living situation (67.9%), and referring caregivers to community agencies (63.2%). Lack of time was the most frequently cited barrier to assessing caregivers' needs (81.1%). The most commonly endorsed facilitators were access to better referral options (67.0%) and easier referral mechanisms (65.1%). Practice patterns, barriers, and facilitators to caregiver assessment did not differ by physician type. Conclusions Primary care physicians use informal, unstructured discussions rather than standardized instruments to assess caregivers' needs and risks. There is heterogeneity in the topics discussed and types of referrals made. Findings indicate the lack of translation of caregiver assessment tools from research to practice.

OBJECTIVES To examine factors associated with caregiver burden from a multifactorial perspective by examining caregiver and care recipient characteristics and a full range of caregiving tasks. DESIGN Nationally representative surveys of community‐dwelling older adults and their family caregivers residing in the United States. SETTING 2011 National Health and Aging Trends Study and National Study of Caregiving. PARTICIPANTS Community‐dwelling older adults and their family caregivers. MEASUREMENTS Caregiver burden, comprising emotional, physical, and financial difficulties associated with caregiving. RESULTS An estimated 14.9 million caregivers assisted 7.6 million care recipients. More than half of caregivers reported burden related to caregiving. In a multivariable regression model, caregivers who assisted with more activities of daily living and instrumental activities of daily living, health management tasks, and health system logistics were more likely to experience burden, as were female caregivers, adult child caregivers, caregivers in poor health, caregivers with anxiety symptoms, and those using respite care. Dementia was the only care recipient characteristic associated with burden. CONCLUSION Caregiver characteristics and provision of caregiving tasks determine caregiver burden more than care recipient characteristics. Absence of an association between type of a care recipient's chronic conditions and burden, except for dementia, suggests that the tasks that caregivers who assist older adults with a variety of health conditions undertake shape the experience of caregiving. J Am Geriatr Soc 67:277–283, 2019.

Objectives To explore patient and caregiver experiences, preferences, and attitudes toward the provision and receipt of caregiving assistance with medical tasks. Design Qualitative study consisting of in‐depth interviews with 20 patient–caregiver dyads. Setting Community and academic‐affiliated primary care clinics. Participants Individuals aged 65 or older with 2 or more health conditions and their family caregivers (n=20 patient–caregiver dyads). Measurements Open‐ended questions were asked about the tasks that the patient and caregiver performed to manage the patient's health conditions; questions were designed to elicit participant reactions and attitudes toward the help they provided or received. Transcripts were analyzed using the constant comparative method. Results Participant preferences and attitudes toward the receipt and provision of disease management tasks were highly personal. Participant responses clustered into 2 caregiving typologies: supportive caregiving relationships and conflicted caregiving relationships. Supportive relationships were characterized by patient–caregiver agreement about caregiver level of involvement, agreement about one another's competency to perform disease‐related tasks, mutual understanding, collaborative decision‐making and disease management, and use of family and formal caregiving. Conflicted relationships were characterized by disagreement about caregiver level of involvement, disagreement about one another's competency to perform disease management tasks, underappreciation of one another's experiences, disagreement over decision‐making and disease management, and use of formal caregiving. Conclusions The views that patient–caregiver dyads expressed in this study illustrate the varied preferences and attitudes toward caregiving assistance with multiple health conditions. These findings support a dyadic approach to evaluating and addressing patient and caregiver needs and attitudes toward provision of assistance.

Clinical trials for dementia caregivers have suffered from small sample sizes that lack adequate power to detect treatment benefits. Addressing these methodological shortcomings is contingent upon successful recruitment and enrollment of caregiver participants, but major barriers impede their participation in research. This presentation describes the lessons learned from recruiting and enrolling dementia caregivers into a pilot randomized controlled trial designed to help caregivers recognize and communicate about pain in dementia care recipients. Using Bronfenbrenner’s ecological model, we organize our discussion of challenges and opportunities into three levels: community (ecosystem), institution (microsystem), and individual. A key challenge at the community level was gatekeeping by organization leaders, including those from support groups, senior centers, and congregate living facilities. At the institutional-level, challenges included an absence of administrative mechanisms for identifying caregivers and a lack of caregiver research expertise on the Institutional Review Board. At the individual-level, challenges included time constraints and varying motivations for participating in research. Strategies for overcoming these challenges spanned the three levels and included establishing trust and rapport with various constituencies; adapting our recruitment approaches to meet the specific motivations of prospective participants; and refining recruitment scripts to allow for greater personalization. Employing these strategies, which can be generalized to recruit other hard-to-reach populations, helped to overcome recruitment challenges and expedite enrollment of caregivers from a diverse range of sociodemographic backgrounds. Further improvement will require coordinated changes at the institutional and community levels, including the development of central research registries and administrative mechanisms for identifying caregivers.

Objectives To understand current practices, challenges, and opportunities for a systematic assessment of family caregivers' needs and risks in primary care. Design Qualitative study consisting of in-depth semi-structured interviews. Setting Four primary care practices located in urban and rural settings. Participants Primary care clinicians, staff, and administrators (N = 30), as well as older adult patients and family caregivers (N = 40), recruited using purposive and maximum variation sampling. Measurements Current experiences, challenges, and opportunities for integrating standardized caregiver assessment into primary care delivery. Interviews were audio-recorded and transcribed; transcripts were analyzed using the constant comparative method of data analysis. Results Participating clinicians had been in practice for an average of 12.8 years (range = 1-36 y). Patients had a mean age of 84.0 years (standard deviation [SD] = 9.7); caregivers had a mean age of 67.0 years (SD = 9.3). There was wide variability in current practices for identifying caregivers' needs and risks, encompassing direct and indirect approaches, when such issues are considered. Participants posited that integrating standardized caregiver assessment into primary care delivery could help improve patient care, enhance clinician-caregiver communication, and validate caregivers' efforts. Barriers to assessment included insufficient time and reimbursement, liability concerns, lack of awareness of community resources, and concerns about patient autonomy. To facilitate future uptake of caregiver assessment, participants recommended brief self-administered assessment tools and post-screen discussions with practice staff. Conclusion Identification of caregivers' needs and risks in primary care is highly variable. Integration of standardized caregiver assessment into practice requires coordinated changes to policy, revision of practice workflows, and an interdisciplinary approach to the development of appropriate assessment tools. J Am Geriatr Soc 68:1262-1270, 2020.

Family caregiver engagement in clinical encounters can promote relationship-centered care and optimize outcomes for people with Alzheimer’s disease and related dementias (ADRD). Little is known, however, about effective ways for health care providers to engage family caregivers in clinical appointments to provide the highest quality care. We describe what caregivers of people with ADRD and people with mild cognitive impairment (MCI) consider potential best practices for engaging caregivers as partners in clinical appointments. Seven online focus groups were convened. Three groups included spousal caregivers ( n = 42), three included non-spousal caregivers ( n = 36), and one included people with MCI ( n = 15). Seven potential best practices were identified, including the following: “acknowledge caregivers’ role and assess unmet needs and capacity to care” and “communicate directly with person with ADRD yet provide opportunities for caregivers to have separate interactions with providers.” Participants outlined concrete steps for providers and health care systems to improve care delivery quality for people with ADRD.

This study uses data from the 2015 National Health and Aging Trends Survey to investigate whether family and unpaid caregiver characteristics are associated with the receipt of caregiver training.

Objective Not only is persistent pain a debilitating health problem for older adults, it also may have negative effects on family relationships. Studies have documented the effects of pain on spouses and on parents of young children. However, research has not extended this line of inquiry to later life, and specifically to the impact of older parents' pain symptoms on adult children. This study addresses the question: Does older mothers' pain affect the quality of relations with offspring? Subjects and design Using data from a survey of 678 adult children of older mothers, this article presents two analyses examining the impact of mothers' self-reported pain on emotional closeness and on tension in the adult child-parent relationship. Results Contrary to research conducted on younger families, multilevel models showed no effects on emotional closeness or tension in relationships with adult children when mothers experienced higher levels of persistent pain. This surprising finding suggests that mechanisms may exist that protect adult child caregivers from stressors that result from a relative's chronic pain. Conclusions Based on the findings of this article, further exploration of the impact of chronic pain on relations between adult children and their parents is justified. Of interest is exploration of factors that may insulate later-life intergenerational relationships from the effects of pain.

Thinking about a loved one's suffering can be emotionally stressful and have negative effects on a person's psychological and physical health over time. This study examined the hypotheses that when thinking about a partner's suffering (1) recalling past support provision to the suffering partner can decrease distress and anger and increase compassion, and (2) attachment orientation moderates these effects.Seventy-seven older adult spouses of individuals with chronic pain were video-recorded while they disclosed: (1) an instance of partner suffering and (2) an instance of partner suffering plus their support provision. Compassion for the partner and their own distress and anger were self-reported immediately after each account. Accounts were coded for statements of support. Attachment was assessed with the Experiences with Close Relationships measure.As hypothesized, distress and anger were lower in the 'suffering with support' condition versus the 'suffering only' condition. There was no evidence that attachment orientation significantly moderated the effect of support recollection on emotional responses; however, more avoidant individuals reported less compassion and anger and used more words reflecting anger across conditions. More anxiously attached individuals reported greater compassion across conditions.When thinking about a partner's suffering, there are attachment-related differences in emotional reactions. Yet, regardless of these differences, it may be adaptive for spouses to think about their role in providing support to their partner to decrease their own negative emotions.

This article provides an overview of the literature describing the effects of geriatric patients’ pain on family members’ relationships, psychological well-being, and physical health. The theoretical mechanisms that underlie the association between patients’ pain and family members’ outcomes are outlined, and studies describing these mechanisms are summarized. Limitations to the current literature are discussed, and key recommendations for future research and practice are presented.

Family caregivers play an important role in the healthcare of older adults, but their circumstances, needs, and risks are often unknown to medical professionals. Standardizing how caregivers’ needs are assessed in healthcare delivery can help clinicians design care plans that take caregivers’ capabilities into account and provide targeted recommendations for caregiver support. Despite the potential of caregiver assessment, little is known about its use in primary care practice. The present study surveyed a national random sample of 1,000 U.S. primary care clinicians (physicians, nurses, social workers) to characterize current practices, barriers, and facilitators of caregiver assessment. A total of 231 completed responses were received. A minority of respondents (11%) reported that their practice or clinic had a standardized procedure for caregiver assessment; one in ten (10%) reported that they had personally conducted a caregiver assessment using a standardized instrument in the past year. The most common barriers to caregiver assessment were lack of time (65%), inability to have private discussions with caregivers (36%), lack of access to referral options (30%), inadequate reimbursement (30%), and reluctance of caregivers to discuss their needs (30%). The most frequently endorsed facilitators to aid future implementation included better availability of referral options (77%), easier referral mechanisms (67%), co-location of mental health specialists, care managers, or social workers (65%), and training in how to address caregiver issues (61%). Findings are discussed within the context of emerging healthcare policies and practice initiatives designed to promote caregiver assessment in health care settings.

Pain in older persons with dementia (PWD) is severely under-detected and under-managed. Family caregivers can play an important role in addressing these disparities by acquiring the requisite skills to communicate PWD’s pain symptoms and behaviors to health care providers, but little is known about how caregivers of dementia patients and their providers approach such pain-related discussions. We employed qualitative methods to explore the perspectives of family caregivers of PWD (n=18) and health care providers (geriatricians, general internists, neurologists, emergency room physicians) involved in PWD’s treatment (n=16) regarding pain communication. We specifically focused on participants’: 1) priorities and expectations for communicating about pain and dementia, 2) challenges to communicating about pain and dementia, and 3) strategies and recommendations for optimizing communication about pain and dementia. Analyses revealed that caregivers and health care providers expected to receive accurate, detailed information from one another, but uncertainty in both groups around differentiating pain behaviors from dementia symptoms acted as a barrier to effective information exchange. Additional challenges to productive pain-related discussions were identified by caregivers, including provider fatalism and lack of interpersonal skills, and by providers, including patient-caregiver disagreement about pain symptoms and unreliable caregiver reporting. Participants endorsed using practical approaches, such as pain scales and logs, as well as rapport-building strategies, such as affirmation of caregivers’ input, to facilitate collaborative discussions.

Purpose Elder mistreatment is now recognized internationally as a pervasive and growing problem, urgently requiring the attention of health care systems, social welfare agencies, policymakers, and the general public. In this article, we provide an overview of global issues in the field of elder abuse, with a focus on prevention. Design and methods This article provides a scoping review of key issues in the field from an international perspective. Results By drawing primarily on population-based studies, this scoping review provided a more valid and reliable synthesis of current knowledge about prevalence and risk factors than has been available. Despite the lack of scientifically rigorous intervention research on elder abuse, the review also identified 5 promising strategies for prevention. Implications The findings highlight a growing consensus across studies regarding the extent and causes of elder mistreatment, as well as the urgent need for efforts to make elder mistreatment prevention programs more effective and evidence based.

We employed the research-to-practice consensus workshop (RTP; workshops held in New York City and Tompkins County, New York, in 2013) model to merge researcher and practitioner views of translational research priorities in palliative care. In the RTP approach, a diverse group of frontline providers generates a research agenda for palliative care in collaboration with researchers. We have presented the major workshop recommendations and contrasted the practice-based research priorities with those of previous consensus efforts. We uncovered notable differences and found that the RTP model can produce unique insights into research priorities. Integrating practitioner-identified needs into research priorities for palliative care can contribute to addressing palliative care more effectively as a public health issue.

Total joint arthroplasty (TJA) is an efficacious treatment for advanced osteoarthritis, but patient acceptance is below medical recommendations, especially among older adults. The present study explored potential explanations of age effects. Participants (n = 100, aged 40–93) had chronic knee or hip pain and were considering but had not previously undergone TJA. Phone interviews assessed demographics, current pain and function, willingness to undergo TJA, and a range of explanatory variables including expected improvements after TJA, future time perspective, aging stereotypes, health locus of control, and accepted risk of death to achieve pain relief. As expected, age was associated with lower willingness to undergo TJA. Among the explanatory variables, limited time horizons, lower expected pain relief, and lower accepted risk of death were associated with both advanced age and lower willingness to undergo TJA. However, this could not fully account for the observed age differences in TJA decisions.

The empirical literature on caregiver burden has been dominated by a focus on dementia and disease-specific samples, and the risk associated with providing disability-related assistance. In this study, we analyzed data from 611 community-dwelling older adults without dementia or severe disability who participated in the 2011 National Health and Aging Trends Study (NHATS) and their primary caregivers who responded to the linked National Study of Caregiving (NSOC). Multivariable logistic regression models examined the relationship between the number of health-related tasks caregivers provided within three domains (instrumental activities of daily living (IADL), health systems logistics, health management) and caregiver burden, a composite measure of caregivers’ self-reported emotional, physical, and financial difficulties associated with providing care (dichotomized into any vs. no burden). After adjusting for older adults’ and caregivers’ sociodemographic and health characteristics, separate models for each domain demonstrated that providing assistance with a greater number of IADL-related tasks (adjusted odds ratio(aOR)=3.5; 95% CI, 1.8–6.4), health systems tasks (aOR=1.8; 95% CI, 1.1–3.0), and health management tasks (aOR=1.6; 95% CI, 0.9–2.7) was associated with a higher risk of burden. In the full model including all domains of assistance, only IADL-related assistance remained significantly associated with burden; caregivers who reported poor health (aOR=2.0; 95% CI, 1.0–3.6), anxiety (aOR=2.4; 95% CI, 1.1–5.3), and cared for an older adult with self-reported depression (aOR=1.8; 95% CI, 1.0–3.0) were more likely to experience burden. Findings suggest that burden is associated most strongly with IADL-related assistance and with the physical and psychological well-being of caregivers and older adults.

Studies examining the relationship between informal caregiving and caregiver burden have largely focused on samples defined by disease or disability, and on the provision of disability-related assistance. This study characterizes a broad range of caregiving activities provided to a nationally-representative sample of community-dwelling older adults. Participants were the primary caregivers (N=1,342) of individuals enrolled in the 2011 National Health and Aging Trends Study (NHATS) who responded to the associated National Study of Caregiving (NSOC). We estimated the prevalence of and associations between the number of tasks within three domains of assistance (instrumental activities of daily living (IADL)-related, health management, health systems logistics) and caregiver burden among caregivers of four groups of older adults: those with dementia and disability (n=261), dementia but not disability (n=230), disability but not dementia (n=229), no dementia or disability (n=622). Caregiver burden was a composite measure of caregivers’ emotional, physical and financial difficulties (dichotomized into any vs. no burden). Within each group, caregivers provided assistance with at least one task across domains of IADL-related assistance (>98%), health systems logistics (>78%), and health management (>54%). Unadjusted analyses using the Mantel-Haenszel trend test showed a significant linear association (p

Objectives To estimate the number of caregivers providing assistance to community-dwelling older persons with and without dementia and with or without substantial disability; to describe the characteristics of caregivers and care recipients in these groups; to characterize the health-related tasks that caregivers provide; and to estimate associations between the numbers of tasks and caregiver burden. Design Nationally representative surveys of caregivers and older adults in the United States. Setting 2011 National Health and Aging Trends Study and National Study of Caregiving. Participants Community-dwelling older adults and their family caregivers, who were selected on the basis of having assisted with mobility, self-care, household activities, transportation, or medical tasks. Measurements Caregiver burden (emotional, physical, financial difficulties) and restrictions on social participation. Results Although much larger proportions of older adults with dementia and disability (98.4%, n = 1.0 million) and dementia but not disability (95.5%, n = 1.3 million) received caregiving assistance, the largest absolute number of individuals receiving assistance were older adults without dementia or disability (4.0 million). Within each caregiver group, caregivers provided assistance with at least one task across domains of activity of daily living and instrumental activity of daily living–related assistance (>98%), health systems logistics (>70%), and health management (>50%). There was a significant linear association between number of tasks provided and risk of burden in virtually all caregiver groups and domains of assistance. Conclusion Caregivers of care recipients without dementia or disability accounted for the largest absolute number of helpers. These caregivers, similar to caregivers of care recipients with dementia or disability, delivered a broad spectrum of health-related tasks and experienced caregiver burden and restrictions on social participation. Findings support the need for interventions that address the needs of caregivers who have not typically been defined as high risk.

Substantial agreement has been achieved on research priorities in palliative care over the past 15 years, as evidenced by consensus conferences and systematic reviews. Despite the presence of a widely endorsed research agenda, however, addressing the gaps in scientific knowledge has progressed slowly, suggesting that researchers face significant obstacles to conducting high-quality research on the most pressing topics in the field.To systematically identify barriers to improved and expanded palliative care research as reported by researchers.Semistructured telephone interviews to solicit barriers to research in palliative care.A purposive, interdisciplinary sample of 61 leading researchers in palliative care.Interviews were transcribed and analyzed using standard qualitative methods.Respondents named five barriers impeding progress: (1) funding, (2) institutional capacity, (3) researcher workforce, (4) challenges related to the topic and population (e.g., attrition, heightened human subjects protections), and (5) public and professional misunderstanding of palliative care and aversion to topics related to serious illness and end-of-life.Research in palliative care is being held back by significant barriers that require the attention of institutions and funders. The consensus within the interdisciplinary sample indicates that concentrated effort to address barriers related to funding and researcher workforce could facilitate progress on established research priorities. More research is needed on viable strategies for overcoming the identified barriers.

The presence of family caregivers in clinical encounters is becoming more common with the aging of the US population and the continued shift of care responsibilities from health professionals in clinical settings to family caregivers at home. Patients accompanied to clinical encounters by caregivers are more likely to be older, sicker, and have lower health literacy. Research shows, however, that providers often do not initiate any caregiver participation and when they do, conversations center on relaying technical medical information rather than preferences and capacity to provide caregiving assistance. Little is known about provider perceptions of engaging caregivers in clinical encounters. Using data from 20 semi-structured interviews with physicians from primary and specialty care, we identified 3 inter-related themes about engaging caregivers in clinical encounters: 1) ambivalence about caregivers’ role in clinical encounters; 2) trepidation about posing questions directly to caregivers; and, 3) beliefs that systemic barriers exist that inhibit integration of caregivers. Providers, especially in primary care encounters, chiefly view caregivers as sources of supplemental information or for absorbing or reinforcing clinical instructions for care at home. Providers also voiced concerns about the ethics of assessing caregiver capacity to provide assistance to the patient without having clinical authority to treat or adequate resources to provide to caregivers. Finally, providers identified structural barriers, including time constraints, for integrating caregivers into the clinical care team. Findings provide insight into provider attitudes on the caregivers’ role, a perspective that is essential for understanding opportunities and challenges for implementing caregiver interventions in clinical settings.

Despite broad appreciation of family caregivers’ relevance to older adults’ health care, few primary care-based interventions have incorporated mechanisms to facilitate systematic caregiver identification, screening, and support. Actionable knowledge regarding how such interventions may be incorporated into clinical practice is remarkably limited. This study used in-depth interviews to elucidate clinicians’ (N=25) and caregivers’ (N=20) perspectives on and suggestions for integrating caregiver screening into primary care practice. Transcripts were analyzed using qualitative content analysis. Participants emphasized the importance of tailoring the caregiver screening intervention to local circumstances and to patient and caregiver preferences. They advocated for an action-oriented approach that would link identified risks with a concrete plan for follow-up (e.g., referral to training) and outcomes relevant to the patient’s care plan. Overall, participants advised that integrating the intervention into practice would require the support of multidisciplinary practice staff, stronger connections between medical and community-based services, and appropriate reimbursement for clinicians.

Best practice guidelines have emphasized the importance of routine pain assessment of older persons with dementia (PWD), yet pain remains severely underdetected and undermanaged in this population. Training family caregivers in observational pain assessment and subsequent communication of the assessment results to a healthcare provider has the potential to help improve pain management among PWD. The goal of this presentation is to describe the approach to developing, refining, and pilot testing the Pain Identification and Communication Toolkit (PICT), a novel intervention to help family caregivers recognize pain symptoms in PWD and communicate those symptoms to healthcare providers. Guided by self-efficacy theory and empirical research on dementia and pain communication, this presentation will detail the approach to developing the PICT intervention manual and delineate its major components, including modules that prepare caregivers to: a) recognize and differentiate pain from dementia symptoms, b) administer an observational pain assessment tool, c) communicate effectively about pain symptoms, and d) plan steps to take when pain is detected. The presentation will report results from the process by which preliminary versions of the PICT manual were refined, including iterative field-testing with a sample of racially and ethnically diverse caregivers of community-dwelling PWD and healthcare providers. Results suggest that the development of PICT represents a useful step in addressing the underdetection and undermanagement of pain in PWD, and can pave the way for future intervention research on caregivers’ initiation of pain-related communication with healthcare providers.

Underpaid and overworked, preschool teachers face multiple barriers in pursuing higher education. In the present study, we explored how logistical and financial barriers hinder early childhood education teachers and teacher's aides from taking college courses, as well as how academic self-concept and social support influence current enrollment. Telephone interviews were conducted with 68 teachers and 38 teacher's aides currently employed by 85 child care centers in western Massachusetts. Results revealed that both structural and psychological factors are associated with teachers' and teacher's aides' enrollment in college. Financial and practical concerns, however, did not depress current enrollment once other factors were taken into account. Beliefs about education and motivation were critical for enrollment. Social support from parents may indirectly influence teachers' enrollment by increasing their motivation for college attendance. Younger teachers, African Americans, and those with friends in colleg...

Elder abuse is a common phenomenon with potentially devastating consequences for older adults. Although researchers have begun to identify predisposing risk factors for elder abuse victims and abusers, little is known about the acute precipitants that lead to escalation to physical violence. We analyzed legal records from highly adjudicated cases to describe these acute precipitants for physical elder abuse. In collaboration with a large, urban district attorney’s office, we qualitatively evaluated legal records from 87 successfully prosecuted physical elder abuse cases from 2003 to 2015. We transcribed and analyzed narratives of the events surrounding physical abuse within victim statements, police reports, and prosecutor records. We identified major themes using content analysis. We identified 10 categories of acute precipitants that commonly triggered physical elder abuse, including victim attempting to prevent the abuser from entering or demanding that he or she leave, victim threatening or attempting to leave/escape, threat or perception that the victim would involve the authorities, conflict about a romantic relationship, presence during/intervention in ongoing family violence, issues in multi-generational child rearing, conflict about the abuser’s substance abuse, confrontation about financial exploitation, dispute over theft/destruction of property, and disputes over minor household issues. Common acute precipitants of physical elder abuse may be identified. Improved understanding of these acute precipitants for escalation to physical violence and their contribution to elder abuse may assist in the development of prevention and management strategies.

This article explores whether understanding of the effects of children’s problems on older parents’ well-being can be advanced by exploring differences in parent–child relationships within families. Using data from a study in which mothers reported on all adult children, we addressed the question: Do patterns of maternal favoritism moderate the impact of children’s problems on psychological well-being? Based on the literature on the effects of children’s problems and on parental favoritism, we hypothesized that problems in the lives of favored adult children will have a more detrimental impact than when they affect unfavored offspring. Results revealed strong and detrimental effects of any offspring’s problems on mothers’ well-being; these effects occurred, however, regardless of parental preference for an adult child. The findings suggest that the well-documented effects of parental preference may be limited in domains such as problems and difficult transitions in adult children’s lives.

Concern over the need for effective and accessible healthcare for individuals with advanced chronic illness has drawn attention to the significant gaps in our knowledge of palliative medicine. To advance our understanding of this field, community-based participatory research (CBPR) is proposed as a tool for future research initiatives. This paper offers a rationale for how CBPR may be employed to address specific gaps in palliative care research. Several examples where this approach has been used previously are described, and potential obstacles to implementing this research method are delineated. Despite challenges to incorporating CBPR to palliative care research, this approach holds substantial potential to advance our current understanding of the field and promote sensitivity for future programs, practices and policies.

The authors examined how ambivalence toward adult children within the same family differs between mothers and fathers and whether patterns of maternal and paternal ambivalence can be explained by the same set of predictors. Using data collected in the Within-Family Differences Study, they compared older married mothers' and fathers' (N = 129) assessments of ambivalence toward each of their adult children (N = 444). Fathers reported higher levels of ambivalence overall. Both mothers and fathers reported lower ambivalence toward children who were married, better educated, and who they perceived to hold similar values; however, the effects of marital status and education were more pronounced for fathers, whereas the effect of children's value congruence was more pronounced for mothers. Fathers reported lower ambivalence toward daughters than sons, whereas mothers reported less ambivalence toward sons than daughters.

Chronic pain is a debilitating and pervasive health problem, particularly among older adults. Researchers and clinicians acknowledge that pain conditions do not occur in isolation, but rather exact a toll on the individual sufferer and the family system at large. No research, however, has explicitly explored the impact of older parents’ chronic pain symptoms on their adult children. In this article, we present relevant predictions from theoretical models that identify the interpersonal effects of chronic illness and pain on family relationships. Guided by theory and empirical research on these topics, we present a conceptual framework of hypothesized risk factors for adult children of parents with chronic pain. We conclude by offering an agenda for future research.