TREATMENT DECISIONS FOR PEOPLE WITH LIFE LIMITING ILLNESSES: AN ANALYSIS OF TREATMENT VARIATION IN SECONDARY PREVENTIVE CARE FOR CARDIOVASCULAR DISEASE AMONG ELDERLY MEDICARE PATIENTS WITH DEMENTIA

This dissertation examines the effect of dementia on the treatment of coronary heart disease (CHD) in elderly Medicare beneficiaries. It specifically tests whether rates of utilization of evidence-based secondary preventive medication treatment (chemoprophylaxis) for CHD are different in patients with dementia compared to those without dementia. Data from the Cardiovascular Health Study were used to investigate the long-term effect of dementia on the use of four types of low burden and low risk chemoprophylaxis for CHD over time (ACE inhibitors, beta-blockers, lipoid-lowering medications and antiplatelet medications). The multivariate analyses employed a range of predictors including predisposing patient characteristics such as age, race, sex, education and the interaction of age and dementia status. Enabling variables included in the analyses are study site, income, supplemental insurance status, and residence in a nursing home. The care need variables include functional status, measured by activities of daily living, and comorbidites. The main findings reveal that the presence of any type of dementia, comorbid with CHD, has an effect on the use of beta-blockers and lipid-lowering medications. Additionally, patients with CHD and vascular type dementia are less likely to report taking beta-blockers, lipid-lowering medications, and antiplatelet medications, but more likely to report using ACE inhibitors. The results are mixed regarding the effect of timing of dementia onset of the use of chemoprophylaxis. Those who developed dementia before CHD were less likely to report using a beta-blocker and lipid-lowering mediation, yet, those who developed dementia after CHD did not discontinue use of chemoprophylaxis after the onset of dementia. The results of this dissertation provide new empirical evidence of the difference in the rate of secondary chemoprophylaxis for CHD among elderly patients with dementia compared to those without dementia. Information about the effect of dementia on the treatment of CHD, as well as factors that predict utilization, could inform health policy to improve care for the millions of Americans living with dementia and CHD

Engaging Persons Living With Dementia in the Research Process: Best Practice Considerations From a National Dementia Meeting

Today more than 35 million people and families worldwide live with dementia. 1 Although there is no cure for dementia, years of investment have yielded many behavioral and other nonpharmacologic programs and interventions aimed at helping people live better with dementia 2 and to support dementia caregivers. 3 Despite promising evidence about these interventions’ statistical and clinical significance, there is a lack of impact from this evidence. 4 It is not clear whether this reflects genuine ineffectiveness in “the real word” or a failure in implementing this evidence

Examining the benefits and harms of Alzheimer's disease screening for family members of older adults: study protocol for a randomized controlled trial

BACKGROUND: Multiple national expert panels have identified early detection of Alzheimer's disease and related dementias (ADRD) as a national priority. However, the United States Preventive Services Task Force (USPSTF) does not currently support screening for ADRD in primary care given that the risks and benefits are unknown. The USPSTF stresses the need for research examining the impact of ADRD screening on family caregiver outcomes. METHODS: The Caregiver Outcomes of Alzheimer's Disease Screening (COADS) is a randomized controlled trial that will examine the potential benefits or harms of ADRD screening on family caregivers. It will also compare the effectiveness of two strategies for diagnostic evaluation and management after ADRD screening. COADS will enroll 1800 dyads who will be randomized into three groups (n = 600/group): the 'Screening Only' group will receive ADRD screening at baseline and disclosure of the screening results, with positive-screen participants receiving a list of local resources for diagnostic follow-up; the 'Screening Plus' group will receive ADRD screening at baseline coupled with disclosure of the screening results, with positive-screen participants referred to a dementia collaborative care program for diagnostic evaluation and potential care; and the control group will receive no screening. The COADS trial will measure the quality of life of the family member (the primary outcome) and family member mood, anxiety, preparedness and self-efficacy (the secondary outcomes) at baseline and at 6, 12, 18 and 24 months. Additionally, the trial will examine the congruence of depressive and anxiety symptoms between older adults and family members at 6, 12, 18 and 24 months and compare the effectiveness of two strategies for diagnostic evaluation and management after ADRD screening between the two groups randomized to screening (Screening Only versus Screening Plus). DISCUSSION: We hypothesize that caregivers in the screening arms will express higher levels of health-related quality of life, lower depressive and anxiety symptoms, and better preparation for caregiving with higher self-efficacy at 24 months. Results from this study will directly inform the National Plan to Address Alzheimer's Disease, the USPSTF and other organizations regarding ADRD screening and early detection policies

Patient characteristics associated with screening positive for Alzheimer's disease and related dementia

Introduction: Screening all older adults for Alzheimer's disease and related dementias (ADRD) in primary care may not be acceptable or feasible. The goal of this study was to identify factors that could optimize screening in primary care and enhance its feasibility. Methods: This is a cross-sectional study in rural, suburban, and urban primary care practices in Indiana. A total of 1,723 patients ≥65 years of age were screened for ADRD using the Memory Impairment Screen. Logistic regression was used to identify patient-specific factors associated with screening positive for ADRD. Results: The positive screening rate was 4.9%. Rates varied significantly across the three study sites. The rural site had the lowest rate (2.8%), which was significantly lower than the rates at the suburban (5.6%) and urban (6.6%) sites (P<0.01). Patient age, sex, and education were significantly (P<0.05) associated with screening positive for ADRD. Conclusion: Targeted screening of patients at risk for ADRD may represent a more optimal and feasible screening alternative to population screening

Health information management practices in informal caregiving: An artifacts analysis and implications for IT design

Introduction Unpaid informal caregivers of adult care recipients, including persons with dementia, experience multiple unmet information needs and information management challenges. Objectives To understand the current personal health information management (PHIM) practices in informal caregiving for adults with and without dementia. Methods Semi-structured interviews were performed with ten informal caregivers—half of whom were caring for persons with dementia—and four formal caregivers at an adult day service. Interviews centered on a paper-based tool distributed by the day service, the CARE Kit, permitting an artifacts analysis of the tools used by participants for PHIM. Qualitative thematic analysis was applied to interview data. Results Caregivers’ PHIM practices aimed to support daily care management and decision-making on behalf of care recipients, through: 1) information acquisition and integration across multiple sources and records; 2) information maintenance, updating, and use over time; and 3) information sharing and communication with healthcare professionals and other family caregivers. Participants reported advantages and challenges of their PHIM practices and tools, including fitting PHIM into their daily lives, managing PHIM-related cognitive workload, the functionality of PHIM tools, and the dynamic, longitudinal nature of PHIM. Conclusion The study produced a number of implications for caregiver health information management information technology (CHIM IT), based on findings about the nature of caregivers’ practices for managing information for adult care recipients. We present CHIM IT requirements related to privacy and security, customization and flexibility, ease of use, credibility and sensitivity, situation awareness, information integration, delegation and shared use, updating and maintenance, archiving and versioning, communication, agency and information access, and validation

Traits of patients who screen positive for dementia and refuse diagnostic assessment

BACKGROUND: As part of the debate about screening for dementia, it is critical to understand why patients agree or disagree to diagnostic assessment after a positive screening test. We used the Perceptions Regarding Investigational Screening for Memory in Primary Care (PRISM-PC) questionnaire to measure the characteristics of patients who screened positive for dementia but refused further diagnostic assessment. METHODS: Survey of patients ≥65 years old without a diagnosis of dementia attending primary care clinics in Indianapolis, IN, in 2008 and 2009. RESULTS: Five hundred and fifty-four individuals completed the PRISM-PC and 63 screened positive. Of those, 21 (33%) accepted and 42 (67%) refused diagnostic assessment. In adjusted models, having larger stigma domain scores and living alone were significantly associated with increased odds of refusing the diagnostic assessment. CONCLUSION: Despite screening positive, many patients refused a diagnostic assessment. Living alone and the perceived stigmas of dementia are associated with the refusal of diagnostic assessment for dementia

Supporting breast cancer screening decisions for caregivers of older women with dementia: study protocol for a randomized controlled trial

BACKGROUND: Alzheimer's disease and related dementias (ADRD) impact a woman's life expectancy and her ability to participate in medical decision-making about breast cancer screening, necessitating the involvement of family caregivers. Making decisions about mammography screening for women with ADRD is stressful. There are no data that suggest that breast cancer screening helps women with ADRD live longer or better. Decision aids may improve the quality of decision-making about mammography for ADRD patients and may inform family caregivers about the risks, benefits, and need for decision-making around mammography screening. METHODS/DESIGN: The Decisions about Cancer Screening in Alzheimer's Disease (DECAD) trial, a randomized controlled clinical trial, will enroll 426 dyads of older women with ADRD (≥75 years) and a family caregiver from clinics and primary-care practices in Indiana to test a novel, evidence-based decision aid. This decision aid includes information about the impact of ADRD on life expectancy, the benefit of mammograms, and the impact on the quality of life for older women with ADRD. Dyads will be randomized to receive the decision aid or active control information about home safety. This trial will examine the effect on the caregiver's decisional conflict (primary outcome) and the caregiver's decision-making self-efficacy (secondary outcome). A second follow-up at 15 months will include a brief, semi-structured interview with the caregiver regarding the patient's experience with mammograms and decision-making about mammograms. At the same time, a review of the patient's electronic medical record (EMR) will look at discussions about mammography with their primary-care physician and mammogram orders, receipt, results, and burden (e.g., additional diagnostic procedures due to false-positive results, identification of an abnormality on the screening exam but further work-up declined, and identification of a clinically unimportant cancer). A third follow-up at 24 months will extract EMR data on mammogram orders, occurrences, results, and the burden of mammograms. DISCUSSION: We hypothesize that caregivers who receive the decision aid will have lower levels of decisional conflict and higher levels of decision-making self-efficacy compared to the control group. We also hypothesize that the DECAD decision aid will reduce mammography use among older women with ADRD

Supporting caregivers of veterans with Alzheimer’s disease and traumatic brain injury: study protocol for a randomized controlled trial

Background: Patients with Alzheimer's disease and related dementias (ADRD) and traumatic brain injury (TBI) and their caregivers require cognitive and behavioral symptom management, interdisciplinary care, support for caregivers, and seamless care coordination between providers. Caring for someone with ADRD or TBI is associated with higher rates of psychological morbidity and burden, social isolation, financial hardship, and deterioration of physical health. Tremendous need exists for primary care-based interventions that concurrently address the care needs of dyads and aim to improve care and outcomes for both individuals with ADRD and TBI and their family caregivers. Methods: The Aging Brain Care Acquiring New Skills While Enhancing Remaining Strengths (ABC ANSWERS) study is a randomized controlled trial that tests the effectiveness of an intervention based on two evidence-based programs that have been developed for and previously tested in populations with ADRD, TBI, stroke, and late-life depression and/or who have survived an intensive care unit stay. This study includes 200 dyads comprised of a veteran with a diagnosis of ADRD or TBI and the veteran's primary informal caregiver. Dyads are randomized to receive the ABC ANSWERS intervention or routine Veterans Health Administration (VHA) primary care with a standardized educational and resource information packet. Data collection occurs at baseline and three follow-up time points (3 months, 6 months, and 12 months). The primary outcome is caregiver quality of life (QoL). A secondary measure for the caregiver is caregiver burden. Secondary measures for both the veteran and caregiver include symptoms of depression and anxiety. Discussion: The ABC ANSWERS intervention integrates common features of an evidence-based collaborative care model for brain health while concurrently attending to the implementation barriers of delivering care and skills to dyads. We hypothesize that caregivers in dyads randomized to the ABC ANSWERS program will experience higher levels of QoL and lower levels of depression, anxiety, dyadic strain, and caregiver burden at 12 months than those receiving usual VHA primary care