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Review Clinical inquiries. Do patients at high risk of Alzheimer's disease benefit from early treatment? 2009
Holt J, Stiltner L, Wallace R, Raetz J. · Department of Family Medicine, Quillen College of Medicine, Eastern Tennessee State University, Johnson City, TN, USA. · J Fam Pract. · Pubmed #19508846 No free full text.
Abstract: Yes, but the extent of the benefit is unclear. Treating patients with early-stage Alzheimer's disease yields statistically significant, though perhaps not clinically significant, improvement in cognition and global function. In a few cases, it may delay loss of function and need for long-term care. Treating patients with mild cognitive impairment (MCI)-the most likely precursor to Alzheimer's disease-with cholinesterase inhibitors seems to have an initial, but perhaps unsustained, benefit over no treatment. Withdrawing anticholinergic drugs from patients taking them promises to reduce symptoms of MCI, but is unlikely to reduce rates of Alzheimer's.
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Review Can dementia be prevented? Brain aging in a population-based context. 2004
Haan MN, Wallace R. · University of Michigan, School of Public Health, Epidemiology, Ann Arbor, Michigan 48104, USA. · Annu Rev Public Health. · Pubmed #15015910 No free full text.
Abstract: As a consequence of global aging of the human population, the occurrence of cognitive impairment and dementia is rapidly becoming a significant burden for medical care and public health systems. By the year 2020, the WHO predicts there will be nearly 29 million demented people in both developed and developing countries. Primary and secondary prevention of dementia through individual and population-level interventions could reduce this imminent risk. Vascular risk factors such as type 2 diabetes, hypertension, dietary fat intake, high cholesterol, and obesity have emerged as important influences on the risk of both vascular and Alzheimer's dementia. Understanding the reasons for differences between populations in genetic vulnerability and environmental exposures may help to identify modifiable risk factors that may lead to effective prevention of vascular and Alzheimer's dementia.
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Article Proxies and consent discussions for dementia research. 2007
Sugarman J, Roter D, Cain C, Wallace R, Schmechel D, Welsh-Bohmer KA. · Department of Medicine, Phoebe R. Berman Bioethics Institute, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, USA. · J Am Geriatr Soc. · Pubmed #17397434 No free full text.
Abstract: OBJECTIVES: To better understand the nature of informed consent encounters for research involving patients with dementia that requires proxy consent. DESIGN: Audiotaping of informed-consent encounters for a study of genetic markers for sporadic Alzheimer's disease. SETTING: Outpatients at an Alzheimer's disease research center. PARTICIPANTS: Patients with dementia and their companions. MEASUREMENTS: Audiotapes were analyzed to characterize communication style and coverage of the standard elements of informed consent and, using the Roter Interaction Analysis System, to capture the dynamics of three-way interaction between the patient, their companion, and the physician investigator. RESULTS: Of 26 informed consent encounters, all involved a patient, a companion, and a physician. Patients had a mean Mini-Mental State Examination (MMSE) score of 21.8. For patients, 49% of their interactions involved agreement and approval (positive statements), 16% psychosocial information, 7% biomedical information, 7% asking questions, and 7% expressing emotion. Companion interactions involved 37% positive statements and 19% biomedical information. Physician interactions involved emotional expressiveness (30%) and positive statements (19%). Discussion length was positively related to MMSE score (Spearman rho=0.45; P<.02). Coverage of required elements of informed consent was fairly comprehensive and had no relationship to patients' MMSE scores. CONCLUSION: These data should inform policies regarding the ethically appropriate ways of conducting research with cognitively impaired adults. For example, patients in this study were more silent than their companions and the physician, but when patients spoke, they primarily agreed with what was said. Although this might first seem to signal assent, such an interpretation should be made with caution for persons with dementia. In addition, previous work on informed consent has focused on its cognitive aspects, but these data reveal that the emotional and social dimensions warrant attention.
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Article How proxies make decisions about research for patients with Alzheimer's disease. 2001
Sugarman J, Cain C, Wallace R, Welsh-Bohmer KA. · Center for the Study of Medical Ethics and Humanities, Duke University Medical Center, Durham, North Carolina 27710-3040, USA. · J Am Geriatr Soc. · Pubmed #11555076 No free full text.
Abstract: We examined the proxy decision-making and informed consent processes for clinical research involving 49 patient-subjects with dementia in an outpatient setting by performing serial in-depth, structured, open-ended telephone interviews. Interviews were tape recorded and transcribed. Transcripts were then coded and analyzed. Although in all cases proxy consent was obtained for research from a legally authorized representative, proxies reported considerable ambiguity regarding who made the decision to participate in research, or to what degree the decision was that of the proxy or of the patient. Reasons proxies gave for participating in research included: hope of direct or indirect benefits to the patient, caregiver, or patient's descendents; desperation; trust in the investigator; belief in the goodness of research; and altruism. These reasons varied according to the type of research. For instance, in drug trials hope of direct benefit prevailed; in studies not evaluating a potential therapy more altruistic concerns predominated. Being a proxy decision maker for research can be burdensome. The degree of burden related to making a decision to participate in research seems influenced by a number of intersecting factors, most importantly, the risk and nature of the study, the extent to which patients were able to participate in the decision, and the duration and severity of dementia. Proxy decision-making concerning participation in research for patients with dementia can be a difficult task. The process might be improved by emphasizing that proxy consent is being sought because the nature of the patient's underlying medical condition can preclude the ability to make meaningful decisions. In addition, clinical researchers should recognize that giving proxy consent might place additional burdens on caregivers and discuss this explicitly when proxy consent is solicited.
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