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

Acceptability and Results of Dementia Screening Among Older Adults in the United States

OBJECTIVES: To measure older adults acceptability of dementia screening and assess screening test results of a racially diverse sample of older primary care patients in the United States. DESIGN: Cross-sectional study of primary care patients aged 65 and older. SETTING: Urban and suburban primary care clinics in Indianapolis, Indiana, in 2008 to 2009. PARTICIPANTS: Nine hundred fifty-four primary care patients without a documented diagnosis of dementia. MEASUREMENTS: Community Screening Instrument for Dementia, the Mini-Mental State Examination, and the Telephone Instrument for Cognitive Screening. RESULTS: Of the 954 study participants who consented to participate, 748 agreed to be screened for dementia and 206 refused screening. The overall response rate was 78.4%. The positive screen rate of the sample who agreed to screening was 10.2%. After adjusting for demographic differences the following characteristics were still associated with increased likelihood of screening positive for dementia: age, male sex, and lower education. Patients who believed that they had more memory problems than other people of their age were also more likely to screen positive for dementia. CONCLUSION: Age and perceived problems with memory are associated with screening positive for dementia in primary care

The methodology of the Agile Nudge University

IntroductionThe Agile Nudge University is a National Institute on Aging-funded initiative to engineer a diverse, interdisciplinary network of scientists trained in Agile processes.MethodsMembers of the network are trained and mentored in rapid, iterative, and adaptive problem-solving techniques to develop, implement, and disseminate evidence-based nudges capable of addressing health disparities and improving the care of people living with Alzheimer's disease and other related dementias (ADRD).ResultsEach Agile Nudge University cohort completes a year-long online program, biweekly coaching and mentoring sessions, monthly group-based problem-solving sessions, and receives access to a five-day Bootcamp and the Agile Nudge Resource Library.DiscussionThe Agile Nudge University is evaluated through participant feedback, competency surveys, and tracking of the funding, research awards, and promotions of participating scholars. The Agile Nudge University is compounding national innovation efforts in overcoming the gaps in the ADRD discovery-to-delivery translational cycle

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

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

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