Projected Costs of Informal Caregiving for Cardiovascular Disease: 2015 to 2035: A Policy Statement From the American Heart Association.

INTRODUCTION: In a recent report, the American Heart Association estimated that medical costs and productivity losses of cardiovascular disease (CVD) are expected to grow from $555 billion in 2015 to $1.1 trillion in 2035. Although the burden is significant, the estimate does not include the costs of family, informal, or unpaid caregiving provided to patients with CVD. In this analysis, we estimated projections of costs of informal caregiving attributable to CVD for 2015 to 2035. METHODS: We used data from the 2014 Health and Retirement Survey to estimate hours of informal caregiving for individuals with CVD by age/sex/race using a zero-inflated binomial model and controlling for sociodemographic factors and health conditions. Costs of informal caregiving were estimated separately for hypertension, coronary heart disease, heart failure, stroke, and other heart disease. We analyzed data from a nationally representative sample of 16 731 noninstitutionalized adults ≥54 years of age. The value of caregiving hours was monetized by the use of home health aide workers' wages. The per-person costs were multiplied by census population counts to estimate nation-level costs and to be consistent with other American Heart Association analyses of burden of CVD, and the costs were projected from 2015 through 2035, assuming that within each age/sex/racial group, CVD prevalence and caregiving hours remain constant. RESULTS: The costs of informal caregiving for patients with CVD were estimated to be $61 billion in 2015 and are projected to increase to $128 billion in 2035. Costs of informal caregiving of patients with stroke constitute more than half of the total costs of CVD informal caregiving ($31 billion in 2015 and $66 billion in 2035). By age, costs are the highest among those 65 to 79 years of age in 2015 but are expected to be surpassed by costs among those ≥80 years of age by 2035. Costs of informal caregiving for patients with CVD represent an additional 11% of medical and productivity costs attributable to CVD. CONCLUSIONS: The burden of informal caregiving for patients with CVD is significant; accounting for these costs increases total CVD costs to $616 billion in 2015 and $1.2 trillion in 2035. These estimates have important research and policy implications, and they may be used to guide policy development to reduce the burden of CVD on patients and their caregivers.

National Institutes of Health State-of-the-Science Conference statement: preventing alzheimer disease and cognitive decline.

The National Institute on Aging and the Office of Medical Applications of Research of the National Institutes of Health convened a State-of-the-Science Conference on 26-28 April 2010 to assess the available scientific evidence on prevention of cognitive decline and Alzheimer disease. This article provides the panel's assessment of the available evidence.

Standardized note template improves screening of firearm access and driving among veterans with dementia.

Little is known about screening used in clinical practice to assess driving and firearm safety among patients with dementia. A case-controlled study was performed, including 22 patients with dementia seen in a geriatric evaluation and management clinic and 22 matched patients with dementia seen in a memory assessment clinic. Data about prevalence of firearm use and driving were obtained. In geriatric evaluation and management clinic, 57.9% of patients had dementia, compared with 71.0% in memory assessment clinic, and more patients were diagnosed with Alzheimer dementia in memory assessment clinic (P = .005). In geriatric evaluation and management clinic, 65% of patients had driving screening compared with 100% in memory assessment clinic (P = .07). Four percent in geriatric evaluation and management clinic were screened for firearm access versus 100% in memory assessment clinic (P < .001). In memory assessment clinic, 31.8% had firearms access and 50% were driving. Many patients continued to drive and have access to firearms. The use of templates for the progress note was effective in increasing the screening rate.

Patient and clinician views on comparative effectiveness research and engagement in research.

AIMS: Describe and compare patient and primary care clinician attitudes about comparative effectiveness research (CER) and inclusion of patients and clinicians as partners in clinical research. MATERIALS & METHODS: Online survey of patients (n = 900) and primary care clinicians (n = 750) from opt-in survey panels. RESULTS: Nearly half (45%) of clinicians were not familiar with CER, but after reviewing a definition of CER, most (76%) agreed that it can improve patient care. Patients and clinicians indicated interest in engagement as research partners (66% and 55%, respectively). Lack of time was the most commonly endorsed barrier. CONCLUSION: Attitudes toward CER and engagement in clinical research were generally favorable. Identified facilitators and barriers point to strategies for enhancing patient and clinician engagement in research.

Clinical use of amyloid-positron emission tomography neuroimaging: Practical and bioethical considerations.

Until recently, estimation of ß-amyloid plaque density as a key element for identifying Alzheimer's disease (AD) pathology as the cause of cognitive impairment was only possible at autopsy. Now with amyloid-positron emission tomography (amyloid-PET) neuroimaging, this AD hallmark can be detected antemortem. Practitioners and patients need to better understand potential diagnostic benefits and limitations of amyloid-PET and the complex practical, ethical, and social implications surrounding this new technology. To complement the practical considerations, Eli Lilly and Company sponsored a Bioethics Advisory Board to discuss ethical issues that might arise from clinical use of amyloid-PET neuroimaging with patients being evaluated for causes of cognitive decline. To best address the multifaceted issues associated with amyloid-PET neuroimaging, we recommend this technology be used only by experienced imaging and treating physicians in appropriately selected patients and only in the context of a comprehensive clinical evaluation with adequate explanations before and after the scan.

A comparison of state advance directive documents.

PURPOSE: Advance directive (AD) documents are based on state-specific statutes and vary in terms of content. These differences can create confusion and inconsistencies resulting in a possible failure to honor the health care wishes of people who execute health care documents for one state and receive health care in another state. The purpose of this study was to compare similarities and differences in the content of state AD documents. DESIGN AND METHODS: AD documents for 50 states and the District of Columbia posted on the Partnership for Caring website were reviewed. States and regions of the country were compared for type or types of documents used and issues included in AD documents. RESULTS: Three states had statutory living will documents only; however, these states did allow for appointment of a health care agent for limited end-of-life decisions. Three states had statutory durable power of attorney for health care documents only, 32 had both statutory living will and durable power of attorney for health care documents, and 13 had statutory forms which combine both types of directive in one document (advance health care directives). Of 8 identified key issues, those addressed by at least 90% of states were designation of a proxy, personal instructions for care, general life-sustaining measures, and terminal illness. When document types were compared, advance health care directive documents included more of the key issues than did living will or durable power of attorney for health care documents (p <.001). IMPLICATIONS: This variability suggests a need for national dialogue to standardize some provisions of AD documents.

Performance-based assessment of falls risk in older veterans with executive dysfunction.

Falling is a serious hazard for older veterans that may lead to severe injury, loss of independence, and death. While the American Geriatrics Society (AGS) provides guidelines to screen individuals at risk for falls, the guidelines may be less successful with specific subgroups of patients. In a veteran sample, we examined whether the Timed Up and Go (TUG) test, including a modified version, the TUG-Cognition, effectively detected potential fallers whose risk was associated with cognitive deficits. Specifically, we sought to determine whether TUG tasks and AGS criteria were differentially associated with executive dysfunction, whether the TUG tasks identified potential fallers outside of those recognized by AGS criteria, and whether these tasks distinguished groups of fallers. Participants included 120 mostly male patients referred to the Memory Assessment Clinic because of cognitive impairment. TUG-Cognition scores were strongly associated with executive dysfunction and differed systematically between fallers grouped by number of falls. These findings suggest that the TUG-Cognition shows promise in identifying fallers whose risk is related to or compounded by cognitive impairment. Future research should study the predictive validity of these measures by following patients prospectively.

How the Patient-Centered Outcomes Research Institute is engaging patients and others in shaping its research agenda.

Clinical research has been driven traditionally by investigators, from generating research questions and outcomes through analysis and release of study results. Building on the work of others, the Patient-Centered Outcomes Research Institute (PCORI) is tapping into its broad-based stakeholder community--especially patients, caregivers, and their clinicians--to generate topics for research, help the institute prioritize those topics, select topics for funding, and ensure patients' involvement in the design of research projects. This article describes PCORI's approach, which is emblematic of the organization's mandate under the Affordable Care Act to seek meaningful ways to integrate the patient's voice into the research process, and describes how it is being used in selection of research that PCORI will fund. We also describe challenges facing our approach, including a lack of common language and training on the part of patients and resistance on the part of researchers to questions that are not researcher generated. Faced with the reality that PCORI will not be able to fund all research questions posed to it, there will also be difficult decisions to make when selecting those that have the highest priority for funding.

The identification and assessment of late-life ADHD in memory clinics.

OBJECTIVE: Little data exist about ADHD in late life. While evaluating patients' memory problems, the memory clinic staff has periodically identified ADHD in previously undiagnosed older adults. The authors conducted a survey to assess the extent to which other memory clinics view ADHD as a relevant clinical issue. METHOD: The authors developed and sent a questionnaire to memory clinics in the United States to determine the extent to which they identified patients with ADHD and the extent to which they took it into consideration. RESULTS: Approximately one half of the memory clinics that responded reported seeing ADHD patients, either identifying previously diagnosed cases and/or newly diagnosing ADHD themselves. One fifth of clinics reported screening regularly for ADHD, and few clinics described accessing collateral informants to establish the diagnosis. CONCLUSION: This article suggests that U.S. memory clinics may not adequately identify and address ADHD in the context of late-life cognitive disorders.

The art of sharing the diagnosis and management of Alzheimer's disease with patients and caregivers: recommendations of an expert consensus panel.

OBJECTIVE: To develop a set of recommendations for primary care physicians (PCPs) suggesting how best to communicate with patients, caregivers, and other family members regarding the diagnosis and management of Alzheimer's disease (AD). PARTICIPANTS: A national roundtable of 6 leading professionals involved in treating or advocating for patients with AD was convened on March 14, 2008. This roundtable included 4 leading academic physicians with diverse backgrounds (a geriatric psychiatrist, a neuropsychiatrist, a neurologist, and a geriatrician) from geographically diverse regions of the United States, who were invited on the basis of their national reputation in the field and experience working with minority populations with dementia; the executive director of a national AD advocacy organization; the executive director of a national advocacy organization for caregivers; and a medical correspondent with expertise in interviewing and small group leadership. EVIDENCE: Expert opinion supported by academic literature (search limited to PubMed, English language, 1996-2008, search terms: Alzheimer's disease, primary care, diagnosis, management, caregiver, family, patient-physician relationship). CONSENSUS PROCESS: Moderated dialogue aimed at generating consensus opinion; only statements endorsed by all authors were included in the final article. CONCLUSIONS: Diagnosis and management of AD by PCPs, utilizing specialist consultation as needed, may contribute to earlier diagnosis and treatment, improved doctor-patient and doctor-caregiver communication, increased attention to caregiver needs, and better clinical and quality-of-life outcomes for patients and caregivers. A set of expert panel recommendations describing practical strategies for achieving these goals was successfully developed.

NIH state-of-the-science conference statement: Preventing Alzheimer's disease and cognitive decline.

OBJECTIVE: To provide health care providers, patients, and the general public with a responsible assessment of currently available data on prevention of Alzheimer's disease and cognitive decline. PARTICIPANTS: A non-Department of Health and Human Services, nonadvocate 15-member panel representing the fields of preventive medicine, geriatrics, internal medicine, neurology, neurological surgery, psychiatry, mental health, human nutrition, pharmacology, genetic medicine, nursing, health economics, health services research, family caregiving, and a public representative. In addition, 20 experts from pertinent fields presented data to the panel and conference audience. EVIDENCE: Presentations by experts and a systematic review of the literature prepared by the Duke University Evidence-based Practice Center, through the Agency for Healthcare Research and Quality. Scientific evidence was given precedence over anecdotal experience. CONFERENCE PROCESS: The panel drafted its statement based on scientific evidence presented in open forum and on published scientific literature. The draft statement was presented on the final day of the conference and circulated to the audience for comment. The panel released a revised statement later that day at http://consensus.nih.gov. This statement is an independent report of the panel and is not a policy statement of the NIH or the Federal Government. CONCLUSIONS: Cognitive decline and Alzheimer's disease are major causes of morbidity and mortality worldwide and are substantially burdensome to the affected persons, their caregivers, and society in general. Extensive research over the past 20 years has provided important insights on the nature of Alzheimer's disease and cognitive decline and the magnitude of the problem. Nevertheless, there remain important and formidable challenges in conducting research on these diseases, particularly in the area of prevention. Currently, firm conclusions cannot be drawn about the association of any modifiable risk factor with cognitive decline or Alzheimer's disease. Highly reliable consensus-based diagnostic criteria for cognitive decline, mild cognitive impairment, and Alzheimer's disease are lacking, and available criteria have not been uniformly applied. Evidence is insufficient to support the use of pharmaceutical agents or dietary supplements to prevent cognitive decline or Alzheimer's disease. We recognize that a large amount of promising research is under way; these efforts need to be increased and added to by new understandings and innovations (as noted in our recommendations for future research). For example, ongoing studies including (but not limited to) studies on antihypertensive medications, omega-3 fatty acids, physical activity, and cognitive engagement may provide new insights into the prevention or delay of cognitive decline or Alzheimer's disease. This important research needs to be supplemented by further studies. Large-scale population-based studies and randomized controlled trials (RCTs) are critically needed to investigate strategies to maintain cognitive function in individuals at risk for decline, to identify factors that may delay the onset of Alzheimer's disease among persons at risk, and to identify factors that may slow the progression of Alzheimer's disease among persons in whom the condition is already diagnosed.

Young adult caregivers: a first look at an unstudied population.

OBJECTIVES: We examined the prevalence, characteristics, and responsibilities of young adults aged 18 to 25 years who are caregivers for ill, elderly, or disabled family members or friends. METHODS: We analyzed 2 previously published national studies (from 1998 and 2004) of adult caregivers. RESULTS: Young adult caregivers make up between 12% and 18% of the total number of adult caregivers. Over half are male, and the average age is 21. Most young adults are caring for a female relative, most often a grandmother. Young adult caregivers identified a variety of unmet needs, including obtaining medical help, information, and help making end-of-life decisions. CONCLUSIONS: Analysis of these 2 surveys broadens our understanding of the spectrum of family caregivers by focusing on caregivers between the ages of 18 and 25 years. The high proportion of young men raises questions about the appropriateness of current support services, which are typically used by older women. Concerted efforts are essential to ensure that young adults who become caregivers are not deterred from pursuing educational and career goals.