Characteristics and Correlates of Perceived Physical and Psychological Health Among Family Caregivers Living With Persons With Advanced Dementia.

BACKGROUND: Various factors drive a care setting shift from institutional to home settings for dementia care until the latest stage of the disease, suggesting the critical role of family caregivers living with persons with dementia. OBJECTIVES: This study explored the characteristics and correlates of self-reported overall physical and psychological (ie, depressive symptoms and stress) health among family caregivers living with persons with dementia in Sweden. METHODS: This cross-sectional, descriptive study used baseline data from an existing music-based intervention study of persons with dementia and their family caregivers (N = 76). Multivariable linear regression analyses were performed. RESULTS: On average, caregivers (n = 38; mean age: 74.8 years) were slightly younger than persons with dementia (n = 38; mean age: 78.6 years). Most caregivers were female (n = 24; 63.2%) and spouses or partners of persons with dementia (n = 37; 97.4%). Caregivers' perceived relationship with their family members with dementia was the only factor associated with caregivers' self-reported overall physical health (b = -0.655, p = .046). This suggests caregivers' more frequent feeling of a good relationship with the persons with dementia was linked to better self-rated physical health among family caregivers living with persons with dementia. CONCLUSIONS: This study highlights the importance of family caregivers' perceived relationship with persons with dementia in the context of caregivers' self-reported physical health. Future research is needed to explore the perceived relationship from the perspectives of persons with dementia and the determinants of caregiving dyads' (persons with dementia and family caregivers) perceived relationship with each other.

Association Between Pain and Fall Worry Among Community-Dwelling Older People With Cognitive Impairment in the United States.

Background and Objectives: Previous studies have found that pain is associated with fall worry among community-dwelling older people. However, both pain and fall worry are poorly understood and underaddressed among community-dwelling older people with cognitive impairment (CI). It is essential to examine the association between pain and fall worry, and how sociodemographic and health characteristics may shape fall worry among this subgroup. Research Design and Methods: We used data from the 2015 National Health and Aging Trends Study (analytic sample: n = 1150 community-dwelling older people with CI; were self-interviewed; mean age: 81; age range: 65-107). The number of pain sites in the prior month was assessed by presenting a card listing common pain sites (eg, back, knees). Two questions assessed past-month fall worry, "did you worry about falling down" and "did this worry ever limit your activities." Following descriptive statistics, we fit multinomial logistic regression models to examine the associations between different pain characteristics (number of sites, severity, location) and non-activity-limiting and activity-limiting fall worry. Results: Non-activity-limiting fall worry was endorsed by 21.1% and activity-limiting fall worry by 13.6% of community-dwelling older people with CI. After adjusting for sociodemographic characteristics and fall-worry-related covariates, multinomial logistic regression analysis found that a greater number of pain sites (relative risk ratio [RRR] = 1.22, 95% Confidence Interval [95% CI] = 1.12-1.33, p <.001) and severe pain (RRR = 2.05, 95% CI = 1.12-3.75, p = .020) was associated with activity-limiting fall worry. Both lower body (knee, foot, and leg) and upper body (hand, wrist, shoulder, neck, and stomach) pain were found to be associated with a high risk of activity-limiting fall worry. Discussion and Implications: These findings suggest pain and fall worry are common among community-dwelling older people with CI and can be elicited directly from those who are communicative. Fall prevention for this population should prioritize pain management to mitigate activity-limiting fall worry because activity limitation increases the risk of falls.

Structural capabilities in primary care practices where nurse practitioners care for persons living with dementia.

BACKGROUND: Primary care structural capabilities (i.e., electronic health records, care coordination, community integration, and reminder systems) can address the multiple needs of persons living with dementia (PLWD). OBJECTIVES: This study describes structural capabilities in primary care practices where nurse practitioners (NPs) provide care to PLWD and compares the presence of structural capabilities in practices with a high and low volume of PLWD. METHODS: We conducted a secondary analysis of cross-sectional data from 293 NPs in 259 practices in California. Logistic regression models were used to determine the association between the volume of PLWD and the presence of structural capabilities. RESULTS: NPs reported that 96% of practices had electronic health records, 61% had community integration, 55% had reminder systems and 35% had care coordination capabilities. Practices with a high volume of PLWD were less likely to have community integration compared to practices with a low volume of PLWD. CONCLUSION: Many PLWD-serving practices do not have the essential infrastructure for providing optimal dementia care. Practice managers should focus on implementing the essential structural capabilities to address the complex needs of PLWD. IMPLICATIONS FOR PRACTICE: Clinicians and practice administrations can use the findings of this study to improve the delivery of care in practices that provide care to PLWD.

Validation and expansion of a behavioral framework for dementia care partner resilience (CP-R).

BACKGROUND AND OBJECTIVES: Resilience - the ability to bounce back after a stressor - is a core component of successful family caregiving for people living with dementia. In this manuscript, we describe the preliminary empirical validation of a new behavioral framework developed from existing literature for assessing care partner resilience, CP-R, and propose its potential value for future research and clinical care. METHODS: We selected 27 dementia care partners who reported significant challenges prompted by a recent health crisis of their care recipient from three local university-affiliated hospitals in the United States. We conducted semi-structured interviews to elicit care partners' accounts of what they did to address those challenges that helped them recover during and after the crisis. Interviews were transcribed verbatim and analyzed using abductive thematic analysis. FINDINGS: When persons with dementia experienced health crises, care partners described various challenges in managing new and often complex health and care needs, navigating informal and formal care systems, balancing care responsibilities with other needs, and managing difficult emotions. We identified five resilience-related behavioral domains, including problem-response (problem-solving, -distancing, -accepting, and -observing), help-related (help-seeking, -receiving, and -disengaging), self-growth (self-care activities, spiritual-related activities, and developing and maintaining meaningful relationships), compassion-related (self-sacrifice and relational compassion behaviors), and learning-related (learning from others and reflecting). DISCUSSIONS AND IMPLICATIONS: Findings support and expand the multidimensional CP-R behavior framework for understanding dementia care partner resilience. CP-R could guide the systematic measurement of dementia care partners' resilience-related behaviors, support individual tailoring of behavioral care plans, and inform the development of resilience-enhancing interventions.

Use of mobile applications and health technologies among dementia caregivers with chronic conditions: A cross-sectional study.

Objective: Almost 80% of people, who are caring for someone with dementia, have one or more chronic conditions and require self-management support. New technologies offer promising solutions; however, little is known about what technologies caregivers use for their health or in general. This study aimed to describe the prevalence of mobile application (app) and health-related technology use among caregivers who have chronic conditions and care for someone with dementia. Methods: A cross-sectional study was conducted with 122 caregivers recruited online and from communities in the Baltimore-metropolitan area. Data were collected with online surveys and computer-assisted telephone interviews. Descriptive and inferential statistics were used to analyze survey data. Results: Study participants were primarily female (95 of 122, 77.9%), middle-aged (average 53 years, standard deviation (SD) 17), well educated (average 16 years, SD 3.3), an adult child of the person with dementia (53 of 122, 43.4%), and had 4 chronic conditions on average (SD 2.6). Over 90% of caregivers used mobile apps (116 of 122), spending a range of 9 to 82 min on each app. Most caregivers reported using social media apps (96 of 116, 82.8%), weather apps (96 of 116, 82.8%), and/or music or entertainment apps (89 of 116, 76.7%). Among caregivers using each app type, more than half of caregivers used social media (66 of 96, 69%), games (49 of 74, 66%), weather (62 of 96, 65%), and/or music or entertainment apps (51 of 89, 57%) daily. Caregivers also used several technologies to support their own health-the most common being websites, mobile devices, and health-related mobile apps. Conclusion: This study supports the feasibility of using technologies to promote health behavior change and support self-management among caregivers.

Building a dementia-capable nursing workforce.

BACKGROUND: Undergraduate nursing students will play a pivotal role in caring for the rising numbers of older adults and people living with dementia (PLWD). However, many do not receive training in geriatrics or dementia and do not enter this field post-graduation, contributing to the workforce shortage. OBJECTIVE: We aimed to capture students' interest and intention to work with PLWD, their suggestions about training, and to evaluate interest in a new elective long-term care (LTC) externship. METHODS: We developed and administered a survey to Bachelor of Science in Nursing students consisting of questions modified from the Dementia Attitude Scale and related to respondents' health care experience, attitudes about caring for older adults, comfort working with PLWD, and willingness to develop geriatric and dementia care skills. We then conducted focus groups about desired curricular and clinical content. RESULTS: Seventy-six students completed the survey. The majority reported low interest in working with and low knowledge of caring for older adults and PLWD. Six focus group participants expressed interest in participating in hands-on learning opportunities. Participants identified specific training components to attract students to geriatrics education. CONCLUSIONS: Our findings informed the development, piloting, and evaluation of a new LTC externship at the University of Washington Schoool of Nursing.

Expanding the use of brief cognitive assessments to detect suspected early-stage cognitive impairment in primary care.

INTRODUCTION: Mild cognitive impairment remains substantially underdiagnosed, especially in disadvantaged populations. Failure to diagnose deprives patients and families of the opportunity to treat reversible causes, make necessary life and lifestyle changes and receive disease-modifying treatments if caused by Alzheimer's disease. Primary care, as the entry point for most, plays a critical role in improving detection rates. METHODS: We convened a Work Group of national experts to develop consensus recommendations for policymakers and third-party payers on ways to increase the use of brief cognitive assessments (BCAs) in primary care. RESULTS: The group recommended three strategies to promote routine use of BCAs: providing primary care clinicians with suitable assessment tools; integrating BCAs into routine workflows; and crafting payment policies to encourage adoption of BCAs. DISSCUSSION: Sweeping changes and actions of multiple stakeholders are necessary to improve detection rates of mild cognitive impairment so that patients and families may benefit from timely interventions.

The Association between Primary Care Practices' Structural Capabilities and Hospitalizations among Persons Living with Dementia.

Background: Persons living with dementia (PLWD) are more likely to be hospitalized than individuals without dementia. Little is known about key features (i.e., structural capabilities) in primary care practices where PLWD receive care. This study assessed the relationship between structural capabilities (i.e., care coordination, community integration, and reminder systems) and hospitalizations among PLWD. Methods: We conducted a secondary analysis of cross-sectional data from 5001 PLWD in 192 practices and used three datasets: nurse practitioner surveys, Medicare claims, and Minimum Data Set. Using generalized estimating equations, we evaluated the association between structural capabilities and hospitalizations. Results: PLWD who received care from practices with care coordination were less likely to have hospitalizations (OR = 0.62, p < .05). No statistically significant associations were observed between community integration and reminder systems and hospitalizations. Conclusion: Primary care practices need to tailor structural capabilities to address the needs of PLWD to reduce hospitalizations.

Development of a behavioural framework for dementia care partners' fall risk management.

BACKGROUND: Although older adults living with dementia (OLWD) are at high risk for falls, few strategies that effectively reduce falls among OLWD have been identified. Dementia care partners (hereinafter referred to as "care partners") may have a critical role in fall risk management (FRM). However, little is known about the ways care partners behave that may be relevant to FRM and how to effectively engage them in FRM. METHODS: Semi-structured, in-depth interviews were conducted with 14 primary care partners (age: 48-87; 79% women; 50% spouses/partners; 64% completed college; 21% people of colour) of community-dwelling OLWD to examine their FRM behaviours, and their observations of behaviours adopted by other care partners who were secondary in the caring role. RESULTS: The analysis of interview data suggested a novel behavioural framework that consisted of eight domains of FRM behaviours adopted across four stages. The domains of FRM behaviours were 1. functional mobility assistance, 2. assessing and addressing health conditions, 3. health promotion support, 4. safety supervision, 5. modification of the physical environment, 6. receiving, seeking, and coordinating care, 7. learning, and 8. self-adjustment. Four stages of FRM included 1. supporting before dementia onset, 2. preventing falls, 3. preparing to respond to falls, and 4. responding to falls. FRM behaviours varied by the care partners' caring responsibilities. Primary care partners engaged in behaviours from all eight behavioural domains; they often provided functional mobility assistance, safety supervision, and modification of the physical environment for managing fall risk. They also adopted behaviours of assessing and addressing health conditions, health promotion support, and receiving, seeking and coordinating care without realizing their relevance to FRM. Secondary care partners were reported to assist in health promotion support, safety supervision, modification of the physical environment, and receiving, seeking, and coordinating care. CONCLUSIONS: The multi-domain and multi-stage framework derived from this study can inform the development of tools and interventions to effectively engage care partners in managing fall risk for community-dwelling OLWD.

Surveillance of long-term complications after treatment of adult brain tumor survivors-review and evidence-based recommendations.

As a result of treatment and diagnosis, adults with primary or metastatic brain tumors experience comorbidities that impacts their health and well-being. The Children's Oncology Group has guideline recommendations for childhood survivors of brain tumors; however, guidelines for monitoring long-term sequela among adult brain tumor survivors are lacking. The purpose of this review is to present the screening recommendations for the long-term complications after brain tumor treatment from a multidisciplinary panel of healthcare professionals. Chronic complications identified include cognitive dysfunction, vasculopathy, endocrinopathy, ophthalmic, ototoxicity, physical disability, sleep disturbance, mood disorder, unemployment, financial toxicity, and secondary malignancy. We invited specialists across disciplines to perform a literature search and provide expert recommendations for surveillance for long-term complications for adult brain tumor survivors. The Brain Tumor Center Survivorship Committee recommends routine screening using laboratory testing, subjective assessment of symptoms, and objective evaluations to appropriately monitor the complications of brain tumor treatments. Effective monitoring and treatment should involve collaboration with primary care providers and may require referral to other specialties and support services to provide patient-centered care during neuro-oncology survivorship. Further research is necessary to document the incidence and prevalence of medical complications as well as evaluate the efficacy of screening and neuro-oncology survivorship programs.

Developing a New Behavioral Framework for Dementia Care Partner Resilience: A Mixed Research Synthesis.

BACKGROUND AND OBJECTIVES: Caring for a person living with dementia requires resilience, the capacity to recover and grow from challenging situations. Despite the increasing interest in assessing and promoting resilience for dementia care partners, behaviors that indicate this attribute are not well known. The aim of this study was to synthesize the literature to identify resilience-related behaviors and develop a new framework for future validation and intervention research. RESEARCH DESIGN AND METHODS: We searched English-language peer-reviewed articles (January 1991-June 2019) reporting qualitative or quantitative descriptions of resilience-related behaviors among dementia care partners. Thematic analysis was used to categorize behaviors into domains, identify the relationships among them, and generate a thematic map. RESULTS: Sixteen articles were identified according to predefined inclusion criteria. Four domains emerged: (a) problem-response behaviors (problem-solving, problem-distancing); (b) self-growth behaviors (self-care activities, spiritual-related activities, and developing and maintaining meaningful social relationships); (c) help-related behaviors (help-seeking and help-receiving); and (d) learning-related behaviors (learning from others and reflection). Definitions of each domain, identification of corresponding behaviors, and formulation of Care Partner Resilience (CP-R) behavioral framework were informed by mixed research synthesis results and other relevant literature. DISCUSSION AND IMPLICATIONS: The CP-R framework emerged as a result of a new focus on identifying and cultivating strengths instead of evaluating strain and burden. It serves as a useful foundation for understanding the impact of specific behaviors on dementia care partner resilience. Once validated, this framework will inform the development of future measures, research, interventions, and policies for dementia care partners.

The Impact of Ambulatory Dementia Care Models on Hospitalization of Persons Living With Dementia: A Systematic Review.

This systematic review presents an overview of the existing dementia care models in various ambulatory care settings under three categories (i.e., home- and community-based care models, partnership between health systems and community-based resources, and consultation models) and their impact on hospitalization among Persons Living with Dementia (PLWD). PRISMA guidelines were applied, and our search resulted in a total of 13 studies focusing on 11 care models. Seven studies reported that utilization of dementia care models was associated with a modest reduction in hospitalization among community-residing PLWD. Only two studies reported statistically significant results. Dementia care models that were utilized in specialty ambulatory care settings such as memory care showed more promising results than traditional primary care. To develop a better understanding of how dementia care models can be improved, future studies should explore how confounders (e.g., stage of dementia) influence hospitalization.

Factors Associated With Intention to Adopt mHealth Apps Among Dementia Caregivers With a Chronic Condition: Cross-sectional, Correlational Study.

BACKGROUND: In the United States, nearly 80% of family caregivers of people with dementia have at least one chronic condition. Dementia caregivers experience high stress and burden that adversely affect their health and self-management. mHealth apps can improve health and self-management among dementia caregivers with a chronic condition. However, mHealth app adoption by dementia caregivers is low, and reasons for this are not well understood. OBJECTIVE: The purpose of this study is to explore factors associated with dementia caregivers' intention to adopt mHealth apps for chronic disease self-management. METHODS: We conducted a cross-sectional, correlational study and recruited a convenience sample of dementia caregivers. We created a survey using validated instruments and collected data through computer-assisted telephone interviews and web-based surveys. Before the COVID-19 pandemic, we recruited dementia caregivers through community-based strategies, such as attending community events. After nationwide closures due to the pandemic, the team focused on web-based recruitment. Multiple logistic regression analyses were used to test the relationships between the independent and dependent variables. RESULTS: Our sample of 117 caregivers had an average age of 53 (SD 17.4) years, 16 (SD 3.3) years of education, and 4 (SD 2.5) chronic conditions. The caregivers were predominantly women (92/117, 78.6%) and minorities (63/117, 53.8%), experienced some to extreme income difficulties (64/117, 54.7%), and were the child or child-in-law (53/117, 45.3%) of the person with dementia. In logistic regression models adjusting for the control variables, caregiver burden (odds ratio [OR] 1.3, 95% CI 0.57-2.8; P=.57), time spent caregiving per week (OR 1.7, 95% CI 0.77-3.9; P=.18), and burden of chronic disease and treatment (OR 2.3, 95% CI 0.91-5.7; P=.08) were not significantly associated with the intention to adopt mHealth apps. In the final multiple logistic regression model, only perceived usefulness (OR 23, 95% CI 5.6-97; P<.001) and the interaction term for caregivers' education and burden of chronic disease and treatment (OR 31, 95% CI 2.2-430; P=.01) were significantly associated with their intention to adopt mHealth apps. Perceived ease of use (OR 2.4, 95% CI 0.67-8.7; P=.18) and social influence (OR 1.8, 95% CI 0.58-5.7; P=.31) were not significantly associated with the intention to adopt mHealth apps. CONCLUSIONS: When designing mHealth app interventions for dementia caregivers with a chronic condition, it is important to consider caregivers' perceptions about how well mHealth apps can help their self-management and which app features would be most useful for self-management. Caregiving factors may not be relevant to caregivers' intention to adopt mHealth apps. This is promising because mHealth strategies may overcome barriers to caregivers' self-management. Future research should investigate reasons why caregivers with a low education level and low burden of chronic disease and treatment have significantly lower intention to adopt mHealth apps for self-management.

Incident Dementia, Glycated Hemoglobin (HbA1c) Levels, and Potentially Preventable Hospitalizations in People Aged 65 and Older With Diabetes.

BACKGROUND: This study was aimed to determine whether incident dementia and HbA1c levels are associated with increased rates of potentially preventable hospitalizations (PPHs) in persons with diabetes. METHOD: A total of 565 adults aged 65+ ever treated for diabetes were enrolled from Adult Changes in Thought study. PPHs were from principal discharge diagnoses and included diabetes PPH (dPPH), respiratory PPH (rPPH), urinovolemic PPH (uPPH), cardiovascular PPH, and other PPH. Poisson generalized estimating equations estimated rate ratios (RRs) and 95% confidence intervals (CIs) for the associations between dementia or HbA1c measures and rate of PPHs. RESULTS: A total of 562 individuals contributed 3 602 dementia-free years, and 132 individuals contributed 511 dementia follow-up years. One hundred twenty-eight (23%) dementia-free individuals had 210 PPH admissions and a crude rate of 58 per 1 000 person-years, while 55 (42%) individuals with dementia had 93 PPH admissions and a crude rate of 182 per 1 000 person-years. The adjusted RR (95% CI) comparing rates between dementia and dementia-free groups were 2.27 (1.60, 3.21) for overall PPH; 5.90 (2.70, 12.88) for dPPH; 5.17 (2.49, 10.73) for uPPH; and 2.01 (1.06, 3.83) for rPPH. Compared with HbA1c of 7%-8% and adjusted for dementia, the RR (95% CI) for overall PPH was 1.43 (1.00, 2.06) for >8% HbA1c and 1.18 (0.85, 1.65) for <7% HbA1c. The uPPH RR was also increased, comparing >8% and <7% HbA1c levels. CONCLUSION: Incident dementia is associated with higher rates of PPHs among people with diabetes, especially PPHs due to diabetes, urinary tract infection (UTI), and dehydration. Potential evidence suggested that HbA1c levels of >8% versus lower levels are associated with higher rates of overall PPHs and UTI- and dehydration-related PPHs.

The Growing Primary Care Nurse Practitioner Workforce: A Solution for the Aging Population Living With Dementia.

Redesigning the healthcare workforce to meet the needs of the growing population of persons living with dementia (PLWD), most of whom reside in the community and receive care from primary care providers, is a national priority. Yet, the shortage of adequately trained providers is raising concerns that the primary care system is not equipped to care for PLWD. The growing nurse practitioner (NP) workforce could bridge this gap. In this review, the authors synthesized the existing evidence from fourteen studies on the utilization of NPs to care for PLWD in primary care. Although the authors found that most NPs were engaged in co-management roles, emerging evidence suggests that NPs also serve as primary care providers for PLWD. Findings describe the impact of NP care on the health system, PLWD, and caregiver outcomes. The authors conclude that the optimal utilization of NPs can increase the capacity of delivering dementia-capable primary care.

Developing a Unifying Model of Resilience in Dementia Caregiving: A Scoping Review and Content Analysis.

Resilience, a capacity for addressing, recovering, and growing from challenging situations, can mitigate dementia care partners' burden. Three main theoretical models predominate, treating resilience variably as an outcome, a trait, or a process. In this scoping review, we examine how these three models inform definitions and measures of resilience in dementia care partners to understand whether there is a single coherent model and identify the gaps in conceptualizing and operationalizing resilience. We searched English-language peer-reviewed articles (January 1991-June 2019) that contained definitions and/or measures of resilience developed for or used with dementia care partners. Data were analyzed using content analysis. We found that perspectives from the three existing theoretical models can be integrated into a unified framework for the study of resilience in dementia care partners. However, major gaps remain in operationalizing resilience for research due to a paucity of resilience outcomes and knowledge about resilience-related behaviors.

A mixed methods systematic review of informal caregivers' experiences of fall risk among community-dwelling elders with dementia.

Evidence on effective fall prevention strategies for community-dwelling elders with dementia is limited, although these elders are at high risk of falling. Informal caregivers may play an essential role in managing fall risk for elders with dementia. Thus, understanding caregiver's experiences is critically important. This systematic review aims to (a) identify caregivers' perceptual, emotional and behavioural responses to fall risk in elders with dementia and (b) examine the outcomes and effects of caregiver behavioural responses. A mixed methods systematic review of 10 databases (PubMed, PsycINFO, CINAHL, Social Service Abstracts, Social Work Abstracts, EMBASE, Web of Science, Scopus, Cochrane Library and TRIP Medical Database) was conducted. We searched English language, peer-review articles (January 1, 1985-March 20, 2020) that met the predefined inclusion/exclusion criteria. Study quality was assessed using the Mixed Methods Appraisal Tool. Data were analysed using thematic synthesis techniques. Twenty-nine studies were included. Six analytic themes were generated concerning caregivers' perceptual, emotional and behavioural responses: (a) fear of the negative health consequences of falls; (b) limited insights into factors contributing to falls; (c) varying expectations of managing fall risk; (d) multi-level efforts; (e) struggling with responsibilities; and (f) inaction and withdrawal. The findings about the outcomes and effects of caregivers' behaviours were synthesised into three analytic themes: (a) multi-faceted outcomes; (b) uncertain and inconsistent evidence; and (c) unclear associations. The study generated new insights in understanding caregivers' responses of fall risk among community-dwelling elders with dementia and identified significant gaps in examining the impact of caregivers' responses and what shapes these responses. Investment in understanding caregivers' perspectives will inform future interventions and policies to reduce negative outcomes for elders, caregivers and care systems.

Measuring caregiver activation to identify coaching and support needs: Extending MYLOH to advanced chronic illness.

INTRODUCTION: Family and friends of seriously ill patients are key partners in providing support and health care at home, managing relationships with clinicians, and navigating complex health care systems. Becoming a knowledgeable, confident, and effective caregiver is a developmental process we term 'caregiver activation' and could be facilitated by clinicians equipped with suitable tools. Managing Your Loved One's Health (MYLOH) is a new tool to identify gaps in caregivers' knowledge, skills, and access to clinical and personal support. Created in partnership with caregivers and clinicians, MYLOH items reflect the essential dimensions of caregiving and can be used to tailor caregiver coaching to domains of greatest need. In this study, we extend MYLOH's initial focus on dementia care to caregivers of patients with other chronic life-limiting illnesses. METHODS: MYLOH was completed by primary caregivers (n = 190) of people with a range of advanced chronic illnesses enrolled in the LifeCourse study, an innovative, whole-person approach to health management. Item relevance and responses were compared by group across MYLOH items and domains using z-tests for equality of proportions. RESULTS: All MYLOH items were relevant to caregiving for all types of chronic illness; only 13% of caregivers answered "not my responsibility" to any question. MYLOH identified caregiving struggles across patient diagnosis groups with a few, disease-specific 'hotspots'. Overall, 64% of caregivers scored low in activation on at least one healthcare management task, especially getting enough help with caregiving, managing everyday caregiving tasks, understanding/managing medications, and knowing how to respond to rapid changes in care recipients' health status. No difficulty was unique to a specific type of care recipient illness. CONCLUSIONS: MYLOH has potential as a tool for identifying caregiver coaching and support needs in managing a range of serious chronic illnesses. Caregiving difficulties endorsed by over 20% of caregivers should be core components of chronic illness management programs regardless of disease focus, with disease-specific tailoring as required. MYLOH may be useful in evaluating caregiver interventions and health systems' performance in integrating caregivers into the care management of patients with complex life-limiting illness.

Managing Your Loved One's Health: Development of a New Care Management Measure for Dementia Family Caregivers.

The National Alzheimer's Plan calls for improving health care for people living with dementia and supporting their caregivers as capable health care partners. Clinically useful measurement tools are needed to monitor caregivers' knowledge and skills for managing patients' often complex health care needs as well as their own self-care. We created and validated a comprehensive, caregiver-centered measure, Managing Your Loved One's Health (MYLOH), based on a core set of health care management domains endorsed by both providers and caregivers. In this article, we describe its development and preliminary cultural tailoring. MYLOH is a questionnaire containing 29 items, grouped into six domains, which requires <20 min to complete. MYLOH can be used to guide conversations between clinicians and caregivers around health care management of people with dementia, as the basis for targeted health care coaching, and as an outcome measure in comprehensive dementia care management interventions.