A perfect storm: Challenges encountered by family caregivers of persons with Alzheimer’s disease during natural disasters

ABSTRACT

Since Hurricane Katrina there has been a movement across the U.S. to examine best practice for disaster response within the aging population. However, little is known about the experience of natural disasters from the perspective of family caregivers of persons with Alzheimer’s disease and related dementia (ADRD). In this exploratory, qualitative study, family caregivers (n=27) were interviewed about their experience with the historic 2015 South Carolina flood. By using thematic analysis, themes were identified to better understand what unique challenges caregivers of person with ADRD experienced. While many caregivers stated they had experienced a natural disaster previously, none had ever done so in their current caregiving role. The caregiving role affected their ability to prepare for the storm and influenced their decision-making regarding evacuation and utilization of recovery resources. Thus, caregivers were confronted by a “perfect storm” of circumstances and uncertainty. Family caregivers need to have actionable emergency plans for disasters that are specific to their role as caregivers of persons with ADRD. Study implications also suggest the role social work professionals can have in educating, advocating, evaluating, and coordinating support to assist caregivers of persons with ADRD as a potentially vulnerable and at-risk population during all phases of disaster.     

Sex differences in the development of mild cognitive impairment and probable Alzheimer’s disease as predicted by hippocampal volume or white matter hyperintensities

This study examined biological sex differences in the development of mild cognitive impairment (MCI) and probable Alzheimer’s disease (AD) development as predicted by changes in the hippocampus or white matter hyperintensities. A secondary data analysis of the National Alzheimer’s Coordinating Center Uniform Data Set was conducted. We selected samples of participants with normal cognition at baseline who progressed to MCI (n = 483) and those who progressed to probable AD (n = 211) to determine if hippocampal volume or white matter hyperintensities (WMH) at baseline predicted progression to probable AD or MCI and whether the rate of progression differed between men and women. The survival analyses indicated that changes in hippocampal volumes affected the progression to probable AD (HR = 0.535, 95% CI [0.300–0.953]) only among women. White men had an increased rate of progression to AD (HR = 4.396, CI [1.012–19.08]; HR = 4.665, 95% CI [1.072–20.29]) compared to men in other race and ethnic groups. Among women, increases in hippocampal volume ratio led to decreased rates of progressing to MCI (HR = 0.386, 95% CI [0.166–0.901]). Increased WMH among men led to faster progression to MCI (HR = 1.048. 95% CI [1.011–1.086]). Women and men who were older at baseline were more likely to progress to MCI. In addition, results from longitudinal analyses showed that women with a higher CDR global score, older age at baseline, or more disinhibition symptoms experienced higher odds of MCI development. Changes in hippocampal volumes affect the progression to or odds of probable AD (and MCI) more so among women than men, while changes in WMH affected the progression to MCI only among men.     

Overcoming the ‘tyranny of the urgent’: integrating gender into disease outbreak preparedness and response

ABSTRACT

This article contributes to discussions on the gender dimensions of disease outbreaks, and preparedness policies and responses, by providing a multi-level analysis of gender-related gaps, particularly illustrating how the failure to challenge gender assumptions and incorporate gender as a priority at the global level has national and local impacts. The implications of neglecting gender dynamics, as well as the potential of equity-based approaches to disease outbreak responses, is illustrated through a case study of the Social Enterprise Network for Development (SEND) Sierra Leone, a non-government organisation (NGO) based in Kailahun, during the Ebola outbreak.     

Bayesian hierarchical joint modeling using skew-normal/independent distributions

The multiple longitudinal outcomes collected in many clinical trials are often analyzed by multilevel item response theory (MLIRT) models. The normality assumption for the continuous outcomes in the MLIRT models can be violated due to skewness and/or outliers. Moreover, patients’ follow-up may be stopped by some terminal events (e.g., death or dropout), which are dependent on the multiple longitudinal outcomes. We proposed a joint modeling framework based on the MLIRT model to account for three data features: skewness, outliers, and dependent censoring. Our method development was motivated by a clinical study for Parkinson’s disease.     

Response-adaptive trial designs with accelerated Thompson sampling

In a clinical trial, sometimes it is desirable to allocate as many patients as possible to the best treatment, in particular, when a trial for a rare disease may contain a considerable portion of the whole target population. The Gittins index rule is a powerful tool for sequentially allocating patients to the best treatment based on the responses of patients already treated. However, its application in clinical trials is limited due to technical complexity and lack of randomness. Thompson sampling is an appealing approach, since it makes a compromise between optimal treatment allocation and randomness with some desirable optimal properties in the machine learning context. However, in clinical trial settings, multiple simulation studies have shown disappointing results with Thompson samplers. We consider how to improve short-run performance of Thompson sampling and propose a novel acceleration approach. This approach can also be applied to situations when patients can only be allocated by batch and is very easy to implement without using complex algorithms. A simulation study showed that this approach could improve the performance of Thompson sampling in terms of average total response rate. An application to a redesign of a preference trial to maximize patient's satisfaction is also presented.     

Conditions for Exercising Residents’ Voting Rights in Long-Term Care Residences: A Prospective Multicenter Study

To assess voting conditions in long-term care settings, we conducted a multicenter survey after the 2009 European elections in France. A questionnaire about voting procedures and European elections was proposed in 146 out of 884 randomized facilities. Sixty-four percent of facilities answered the questionnaire. Four percent of residents voted (national turnout: 40%), by proxy (58%) or at polling places (42%). Abstention related to procedural issues was reported in 32% of facilities. Sixty-seven percent of establishments had voting procedures, and 53% declared that they assessed residents’ capacity to vote. Assistance was proposed to residents for voter registration, for proxy voting, and for voting at polling places, respectively, in 33%, 87%, and 80% of facilities. This survey suggests that residents may be disenfranchised and that more progress should be made to protect the voting rights of residents in long-term care facilities.     

The food insecurity―obesity paradox as a vicious cycle for women: inequalities and health

Poverty and income inequality undermine women's health in a myriad of ways. This article discusses findings from the Full Plate Project, which addressed women's experience of food security, obesity, and chronic disease in Atlantic Canada. Through first-hand accounts, it identifies a vicious cycle surrounding the food insecurity–obesity paradox. The cycle's core elements included experiences of poverty, food insecurity and nutritional deprivation, weight gain leading to obesity, stress, and experiences of chronic illness. These mainly qualitative findings provide a vivid and multi-layered analysis of the effects of inequalities on health. A majority of Full Plate participants were lone mothers and unattached women, and existing outside of a two-adult member household framework. The vicious cycles experienced are intertwined and cannot be addressed by compartmentalising elements of health or social services. Evidence indicates that policies must respond fully to the social determinants of health and multiple inequalities related to poverty, gender, age, mobility, disability, location, culture, coping skills, and other dynamics.     

Using repeated-prevalence data in multi-state modeling of renal replacement therapy

Multi-state models help predict future numbers of patients requiring specific treatments but these models require exhaustive incidence data. Deriving reliable predictions from repeated-prevalence data would be helpful. A new method to model the number of patients that switch between therapeutic modalities using repeated-prevalence data is presented and illustrated. The parameters and goodness of fit obtained with the new method and repeated-prevalence data were compared to those obtained with the classical method and incidence data. The multi-state model parameters’ confidence intervals obtained with annually collected repeated-prevalence data were wider than those obtained with incidence data and six out of nine pairs of confidence intervals did not overlap. However, most parameters were of the same order of magnitude and the predicted patient distributions among various renal replacement therapies were similar regardless of the type of data used. In the absence of incidence data, a multi-state model can still be successfully built with annually collected repeated-prevalence data to predict the numbers of patients requiring specific treatments. This modeling technique can be extended to other chronic diseases.     

网络群体事件政府治理的演化博弈分析

利用演化博弈模型预测舆论的发展趋势,对政府应对网络群体事件采取的治理模式进行了研究.在一般化复制动态模型基础上建立网络群体事件舆论的传播方程,将地方政府部门与弱势群体的策略互动和行为演化融入到传染病传播模型中,用以模拟舆论的扩散和收敛过程.结果表明:在网络群体事件初期,如果弱势群体通过抗争获得政府补偿的概率不断增大,将造成事态的扩大.此时,地方政府应控制信息的交流程度与初始抗争人数,减缓舆论的扩散;在网络群体事件舆论大范围扩散阶段,上级政府介入并采取惩罚措施,及时披露信息,促使网络舆论的收敛平息,实现社会福利最大化.     

Seclusion,decision-making power,and gender disparities in adult health: Examining hypertension in India

Research on the social determinants of health in developing countries is increasingly focusing on the importance of gender. Cardiovascular conditions such as hypertension are a growing concern in developing countries, where they are now the leading cause of death. Researchers have documented differences in hypertension between men and women, but the importance of gendered practices in shaping these differences has been left unexamined. Using national data from the India Human Development Survey 2005 (N = 101,593), this study assesses the moderating role of two salient and widespread gendered practices—women’s seclusion and decision-making power—on hypertension disparities between women and men. Both seclusion and low decision-making power are associated with increased odds of hypertension for women, but in the case of seclusion reduced hypertension for men. Results also show the gender gap in hypertension is exacerbated with women’s seclusion and low decision-making power.