Dementia care in rural China

Dementia is a major cause of disability and has immense cost implications for the individual suffering from the condition, family caregivers and society. Given the high prevalence of dementia in China with its enormous and rapidly expanding population of elderly adults, it is necessary to develop and test approaches to the care for patients with this disorder. The need is especially great in rural China where access to mental healthcare is limited, with the task made more complex by social and economic reforms over the last 30 years that have transformed the Chinese family support system, family values and health delivery systems. Evidence-based collaborative care models for dementia, depression and other chronic diseases that have been developed in some Western countries serve as a basis for discussion of innovative approaches in the management of dementia in rural China, with particular focus on its implementation in the primary care system.     

The Experience of Dementia in China

This paper reports the results of a longitudinal study carried out in urban China on the health and mental status of 200 elders 70 years of age or older and focuses on the experience of dementia. While older people and their families are aware of the phenomenon of dementia, it does not evoke the kind of dread that is common among Americans. This different response can be traced to beliefs about dementia, cultural values, and situational features of contemporary Chinese life.     

Appropriation and Dementia in India

Biomedical technologies like MRI scans offer a way for carers and people with dementia to ‘see’ pathology, as a means to reorient their perceptions of the body and functionality. Through interpretive and syncretic processes, the MRI and the diagnosis of dementia facilitate the incorporation of the clinical category ‘dementia’ into social understandings of illness and care in India. Complex shifts occur as families and providers move from socio-cultural explanations of disruption to bio-social etiologies of the disease ‘dementia’ and then to socio-ecological frameworks of causality. Both the biomedicalisation of illness and the localisation of illness occur as the clinical category ‘dementia’ is folded into local understandings of illness and care. Through elucidating how the dialectic between biomedical and local knowledge is operationalized, we offer insights into how dementia is absorbed and appropriated into Indian cultural contexts.     

A network theory of mental disorders

In recent years, the network approach to psychopathology has been advanced as an alternative way of conceptualizing mental disorders. In this approach, mental disorders arise from direct interactions between symptoms. Although the network approach has led to many novel methodologies and substantive applications, it has not yet been fully articulated as a scientific theory of mental disorders. The present paper aims to develop such a theory, by postulating a limited set of theoretical principles regarding the structure and dynamics of symptom networks. At the heart of the theory lies the notion that symptoms of psychopathology are causally connected through myriads of biological, psychological and societal mechanisms. If these causal relations are sufficiently strong, symptoms can generate a level of feedback that renders them self‐sustaining. In this case, the network can get stuck in a disorder state. The network theory holds that this is a general feature of mental disorders, which can therefore be understood as alternative stable states of strongly connected symptom networks. This idea naturally leads to a comprehensive model of psychopathology, encompassing a common explanatory model for mental disorders, as well as novel definitions of associated concepts such as mental health, resilience, vulnerability and liability. In addition, the network theory has direct implications for how to understand diagnosis and treatment, and suggests a clear agenda for future research in psychiatry and associated disciplines.     

Collaboration between general practitioners (GPs) and mental healthcare professionals within the context of reforms in Quebec

Background In the context of the high prevalence and impact of mental disorders worldwide, and less than optimal utilisation of services and adequacy of care, strengthening primary mental healthcare should be a leading priority. This article assesses the state of collaboration among general practitioners (GPs), psychiatrists and psychosocial mental healthcare professionals, factors that enable and hinder shared care, and GPs’ perceptions of best practices in the management of mental disorders. A collaboration model is also developed.Methods The study employs a mixed-method approach, with emphasis on qualitative investigation. Drawing from a previous survey representative of the Quebec GP population, 60 GPs were selected for further investigation.Results Globally, GPs managed mental healthcare patients in solo practice in parallel or sequential follow-up with mental healthcare professionals. GPs cited psychologists and psychiatrists as their main partners. Numerous hindering factors associated with shared care were found: lack of resources (either professionals or services); long waiting times; lack of training, time and incentives for collaboration; and inappropriate GP payment modes. The ideal practice model includes GPs working in multidisciplinary group practice in their own settings. GPs recommended expanding psychosocial services and shared care to increase overall access and quality of care for these patients.Conclusion As increasing attention is devoted worldwide to the development of optimal integrated primary care, this article contributes to the discussion on mental healthcare service planning. A culture of collaboration has to be encouraged as comprehensive services and continuity of care are key recovery factors of patients with mental disorders.     

Living invisible: HTLV-1-infected persons and the lack of care in public health

Introduction

Human T-cell lymphotropic virus type 1 (HTLV-1) infection is intractable and endemic in many countries. Although a few individuals have severe symptoms, most patients remain asymptomatic throughout their lives and their infections may be unknown to many health professionals. HTLV-1 can be considered a neglected public health problem and there are not many studies specifically on patients'' needs and emotional experiences.

Objective

To better understand how women and men living with HTLV-1 experience the disease and what issues exist in their healthcare processes.

Methods

A qualitative study using participant observation and life story interview methods was conducted with 13 symptomatic and asymptomatic patients, at the outpatient clinic of the Emilio Ribas Infectious Diseases Institute, in Sao Paulo, Brazil.

Results and Discussion

The interviewees stated that HTLV-1 is a largely unknown infection to society and health professionals. Counseling is rare, but when it occurs, focuses on the low probability of developing HTLV-1 related diseases without adequately addressing the risk of infection transmission or reproductive decisions. The diagnosis of HTLV-1 can remain a stigmatized secret as patients deny their situations. As a consequence, the disease remains invisible and there are potentially negative implications for patient self-care and the identification of infected relatives. This perception seems to be shared by some health professionals who do not appear to understand the importance of preventing new infections.

Conclusions

Patients and medical staff referred that the main focus was the illness risk, but not the identification of infected relatives to prevent new infections. This biomedical model of care makes prevention difficult, contributes to the lack of care in public health for HTLV-1, and further perpetuates the infection among populations. Thus, HTLV-1 patients experience an “invisibility” of their complex demands and feel that their rights as citizens are ignored.     

Conceptualization of psychiatric illness and help-seeking behavior among Chinese

Problem conceptualizations of Chinese psychiatric patients were studied in relation to the patterns of help-seeking and ways of coping. Patients who conceptualized their initial problems in purely psychological terms were more likely to use self-directed psychological coping methods, delay initial professional consultation, and approach mental health professionals. Patients who used only somatic concepts were least likely to approach mental health professionals initially or any time during their previous consultation history, and tended to approach medical resources to cope with their problems. Patients who conceptualized their problems in mixed terms approached professional help early on and reached psychiatric resources soonest. These results provide a clearer perspective to understand the somatization tendency among Chinese patients.     

Opening the Gift: Social Inclusion, Professional Codes and Gift-Giving in Long-Term Mental Healthcare

Deinstitutionalisation has not only made the social inclusion of clients a key objective in long-term mental healthcare, it may also affect the role of the care professional. This article investigates whether the social inclusion objective clashes with other long-standing professional values, specifically when clients give gifts to care professionals. In making a typology of gifts, we compare the literature on gift-giving with professional codes for gifts and relate both to the objective of social inclusion of clients. Our typology draws on an analysis of ethnographic fieldwork carried out in 2007/2008 at a Dutch mental healthcare centre. We identify four types of gifts for professionals in long-term mental healthcare, each relating individually to professional codes and the objective of social inclusion of clients. Only the ‘personal gift’ directly supports social inclusion, by fostering personal relationships between professionals and clients. Acceptance of this type of gift is advocated only for long-term care professionals. We suggest that professional codes need to consider this typology of gifts, and we advocate promoting reflexivity as a means of accounting for professional behaviour in deinstitutionalised care settings.     

Contested futures: envisioning “Personalized,” “Stratified,” and “Precision” medicine

In recent years, discourses around “personalized,” “stratified,” and “precision” medicine have proliferated. These concepts broadly refer to the translational potential carried by new data-intensive biomedical research modes. Each describes expectations about the future of medicine and healthcare that data-intensive innovation promises to bring forth. The definitions and uses of the concepts are, however, plural, contested and characterized by diverse ideas about the kinds of futures that are desired and desirable. In this paper, we unpack key disputes around the “personalized,” “stratified,” and “precision” terms, and map the epistemic, political and economic contexts that structure them as well as the different roles attributed to patients and citizens in competing future imaginaries. We show the ethical and value baggage embedded within the promises that are manufactured through terminological choices and argue that the context and future-oriented nature of these choices helps to understanding how data-intensive biomedical innovations are made socially meaningful.     

A comprehensive SWOT audit of the role of the biomedical physicist in the education of healthcare professionals in Europe

Although biomedical physicists provide educational services to the healthcare professions in the majority of universities in Europe, their precise role with respect to the education of the healthcare professions has not been studied systematically. To address this issue we are conducting a research project to produce a strategic development model for the role using the well-established SWOT (Strengths, Weaknesses, Opportunities, Threats) methodology. SWOT based strategic planning is a two-step process: one first carries out a SWOT position audit and then uses the identified SWOT themes to construct the strategic development model. This paper reports the results of a SWOT audit for the role of the biomedical physicist in the education of the healthcare professions in Europe. Internal Strengths and Weaknesses of the role were identified through a qualitative survey of biomedical physics departments and biomedical physics curricula delivered to healthcare professionals across Europe. External environmental Opportunities and Threats were identified through a systematic survey of the healthcare, healthcare professional education and higher education literature and categorized under standard PEST (Political, Economic, Social-Psychological, Technological-Scientific) categories. The paper includes an appendix of terminology. Defined terms are marked with an asterisk in the text.     

Increased Healthcare Service Utilizations for Patients with Dementia: A Population-Based Study

Background

The majority of previous studies investigating the health care utilization of people with dementia were conducted in Western societies. There is little information on the economic burden on the healthcare system attributable to dementia in Asian countries. This study thus investigated differences in utilization of healthcare services between subjects with and those without a diagnosis of dementia using Taiwan’s National Health Insurance population-based database.

Methods

This study comprised 5,666 subjects with a dementia diagnosis and 5,666 age- and gender-matched comparison subjects without a dementia diagnosis. We individually followed each subject for a 1-year period starting from their index date to evaluate their healthcare resource utilization. Healthcare resource utilization included the number of outpatient visits and inpatient days, and the mean costs of outpatient and inpatient treatments. In addition, we divided healthcare resource utilization into psychiatric and non-psychiatric services.

Results

As for utilization of psychiatric services, subjects with a dementia diagnosis had significantly more outpatient visits (2.2 vs. 0.3, p<0.001) and significantly higher outpatient costs (US$124 vs. US$16, p<0.001) than comparison subjects. For non-psychiatric services, subjects with a dementia diagnosis also had significantly more outpatient visits (34.4 vs. 31.6, p<0.001) and significantly higher outpatient costs (US$1754 vs. US$1322, p<0.001) than comparison subjects. For all healthcare services, subjects with a dementia diagnosis had significantly more outpatient visits (36.7 vs. 32.0, p<0.001) and significantly higher outpatient costs (US$1878 vs. US$1338, p<0.001) than comparison subjects. Furthermore, the total cost was about 2-fold greater for subjects with a dementia diagnosis than for comparison subjects (US$3997 vs. US$2409, p<0.001).

Conclusions

We concluded that subjects who had received a clinical dementia diagnosis had significantly higher utilization of all healthcare services than comparison subjects.     

Prevalence Studies of Dementia in Mainland China,Hong Kong and Taiwan: A Systematic Review and Meta-Analysis

Background

Many studies have considered the prevalence of dementia in mainland China, Hong Kong and Taiwan. However, area level estimates have not been produced. This study examines area differences across mainland China, Hong Kong and Taiwan adjusting for the effect of methodological factors with the aim of producing estimates of the numbers of people with dementia in these areas.

Method and Findings

A search of Chinese and English databases identified 76 dementia prevalence studies based on samples drawn from mainland China, Hong Kong and Taiwan between 1980 and 2012. A pattern of significantly decreasing prevalence was observed from northern, central, southern areas of mainland China, Hong Kong and Taiwan. Area variations in dementia prevalence were not explained by differences in methodological factors (diagnostic criteria, age range, study sample size and sampling method), socioeconomic level or life expectancy between areas. The results of meta-analysis were applied to current population data to provide best estimate. Based on the DSM-IV diagnostic criteria, the total number of people aged 60 and over with dementia in mainland China, Hong Kong and Taiwan is 8.4 million (4.6%, 95% CI: 3.4, 5.8) and in northern, central and southern areas are 3.8 (5.1%, 95% CI: 4.1, 6.1), 3.2 (4.4%, 95% CI: 3.2, 5.6) and 1.2 (3.9%, 95% CI: 2.3, 5.4) million respectively. These estimates were mainly based on the studies existing in highly developed areas and potentially affected by incomplete and insufficient data.

Conclusions

The findings of this review provide a robust estimate of area differences in dementia prevalence. Application of the estimated prevalence to population data reveals the number of people with dementia is expected to double every 20 years, areas in mainland China will be facing the greatest dementia challenge.     

Death,taxes, public opinion,and the Midas touch of Mary Tyler Moore: accounting for promises by politicians to help avert and control diabetes

Anthropologists have begun to publish ethnographic accounts of policy-making, but few have studied medical or health matters, despite broad acceptance in anthropology that "biopower" permeates contemporary societies. This article presents some findings from an ethnographic study of how diabetes gained recognition as a pressing public health problem in Canada. It underlines the importance of statistics for constituting power within and across nation states. Statistics imbricate people and things distributed across vast distances, but they still need to be generated and invoked by individuals to engender effects--as illustrated in this article by the contributions of researchers, aboriginal leaders, and an American actress, Mary Tyler Moore--in this case, the development of Canadian government policies justified in the name of averting and controlling diabetes. To make sense of these findings, subtle differences between two concepts coined by Michel Foucault, "biopower" and "governmentality," seem significant.     

Inclusion of Ethical Issues in Dementia Guidelines: A Thematic Text Analysis

Background

Clinical practice guidelines (CPGs) aim to improve professionalism in health care. However, current CPG development manuals fail to address how to include ethical issues in a systematic and transparent manner. The objective of this study was to assess the representation of ethical issues in general CPGs on dementia care.

Methods and Findings

To identify national CPGs on dementia care, five databases of guidelines were searched and national psychiatric associations were contacted in August 2011 and in June 2013. A framework for the assessment of the identified CPGs'' ethical content was developed on the basis of a prior systematic review of ethical issues in dementia care. Thematic text analysis and a 4-point rating score were employed to assess how ethical issues were addressed in the identified CPGs. Twelve national CPGs were included. Thirty-one ethical issues in dementia care were identified by the prior systematic review. The proportion of these 31 ethical issues that were explicitly addressed by each CPG ranged from 22% to 77%, with a median of 49.5%. National guidelines differed substantially with respect to (a) which ethical issues were represented, (b) whether ethical recommendations were included, (c) whether justifications or citations were provided to support recommendations, and (d) to what extent the ethical issues were explained.

Conclusions

Ethical issues were inconsistently addressed in national dementia guidelines, with some guidelines including most and some including few ethical issues. Guidelines should address ethical issues and how to deal with them to help the medical profession understand how to approach care of patients with dementia, and for patients, their relatives, and the general public, all of whom might seek information and advice in national guidelines. There is a need for further research to specify how detailed ethical issues and their respective recommendations can and should be addressed in dementia guidelines. Please see later in the article for the Editors'' Summary     

Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia?

MethodsA cross-sectional study interviewing 60 dyads (a person with early dementia and preserved capacity and their family carer) each completing a modified LSPQ. We assessed how closely carers’ choices resembled the PWD’s preferences for treatment in three proposed health states: the here and now; severe stroke with coma; terminal cancer. Agreement between the PWD and their family carer responses was assessed using Kappa and Prevalence-Adjusted Bias-Adjusted Kappa (PABAK) statistics. We examined whether carer burden and distress, and relationship quality, influenced agreement.ResultsIn interviews PWD were able to indicate their treatment preferences across all three scenarios. In the here-and-now most wanted antibiotics (98%), fewer cardio-pulmonary resuscitation (CPR) (50%) and tube feeding (47%). In severe stroke and coma antibiotics remained the more preferred treatment (88%), followed by CPR (57%) and tube feeding (30%). In advanced cancer PWD expressed lower preferences for all treatments (antibiotics 68%; CPR 50%; tube feeding 37%). Carers’ choices were similar to the PWDs’ preferences in the here-and-now (71% (k = 0.03; PABAK = 0.4) with less agreement for future hypothetical health states. In severe stroke and coma carers tended wrongly to suggest that the PWD preferred more intervention (antibiotic, 67%; k = -0.022; PABAK = -0.60; CPR, 73%; k = 0.20; PABAK = -0.20, tube feeding, 66%; k = 0.25; PABAK = -0.12). In advanced cancer the agreement between PWD and carers was low (antibiotics; k = -0.03; PABAK = -0.52; CPR, k = -0.07; PABAK = -0.45; tube feeding; k = 0.20; PABAK = -0.22). However, both PWD and carers showed marked uncertainty about their preferences for end of life treatment choices. Relationship quality, carer distress and burden had no influence on agreement.ConclusionsThis study is the first to have used the LSPQ with PWD in the UK to consider treatment options in hypothetical illness scenarios. Key finding are that family carers had a low to moderate agreement with PWD on preferences for end of life treatment. This underscores how planning for care at the end of life is beset with uncertainty, even when the carer and PWD perceive the care-giving/receiving relationship is good. Families affected by dementia may benefit from early and ongoing practical and emotional support to prepare for potential changes and aid decision making in the context of the realities of care towards the end of life.     

The Influence of Multimorbidity on Clinical Progression of Dementia in a Population-Based Cohort

Introduction

Co-occurrence with other chronic diseases may influence the progression of dementia, especially in case of multiple chronic diseases. We aimed to verify whether multimorbidity influenced cognitive and daily functioning during nine years after dementia diagnosis compared with the influence in persons without dementia.

Methods

In the Kungsholmen Project, a population-based cohort study, we followed 310 persons with incident dementia longitudinally. We compared their trajectories with those of 679 persons without dementia. Progression was studied for cognition and activities of daily life (ADLs), measured by MMSE and Katz Index respectively. The effect of multimorbidity and its interaction with dementia status was studied using individual growth models.

Results

The mean (SD) follow-up time was 4.7 (2.3) years. As expected, dementia related to both the decline in cognitive and daily functioning. Irrespective of dementia status, persons with more diseases had significantly worse baseline daily functioning. In dementia patients having more diseases also related to a significantly faster decline in daily functioning. Due to the combination of lower functioning in ADLs at baseline and faster decline, dementia patients with multimorbidity were about one to two years ahead of the decline of dementia patients without any co-morbidity. In persons without dementia, no significant decline in ADLs over time was present, nor was multimorbidity related to the decline rate. Cognitive decline measured with MMSE remained unrelated to the number of diseases present at baseline.

Conclusion

Multimorbidity was related to baseline daily function in both persons with and without dementia, and with accelerated decline in people with dementia but not in non-demented individuals. No relationship of multimorbidity with cognitive functioning was established. These findings imply a strong interconnection between physical and mental health, where the greatest disablement occurs when both somatic and mental disorders are present.     

Qualitative Evaluation of Advanced Care Planning in Early Dementia (ACP-ED)

Background

End-of-life-care is often poor in individuals with dementia. Advanced care planning (ACP) has the potential to improve end-of-life care in dementia. Commonly ACP is completed in the last six months of life but in dementia there may be problems with this as decision-making capacity and ability to communicate necessarily decrease as the disease progresses. Choosing the right time to discuss ACP with people with dementia may be challenging given the duration of the illness may be up to nine years.

Aims

To explore the acceptability of discussing ACP with people with memory problems and mild dementia shortly after diagnosis.

Methods

In-depth interviews were conducted with 12 patients and eight carers who had participated in ACP discussions and six staff members from a memory clinic and a community mental health team who had either conducted or attended the discussions for training purposes.

Results

Patients and carers found ACP a positive intervention that helped them think about the future, enabled people with dementia to make their wishes known, and resulted in their feeling relieved and less worried about the future. The importance of sharing the ACP documentation between health service providers was highlighted.

Conclusions

This qualitative evaluation of ACP in early dementia has encouragingly positive results which support the wider application of the intervention in memory services and community mental health teams. Strategies are suggested to support the implementation of ACP further in clinical practice.     

Family refusal of emergency medical treatment in China: An investigation from legal,empirical and ethical perspectives

This paper is an analysis of the limits of family authority to refuse life saving treatment for a family member (in the Chinese medical context). Family consent has long been praised and practiced in many non-Western cultural settings such as China and Japan. In contrast, the controversy of family refusal remains less examined despite its prevalence in low-income and middle-income countries. In this paper, we investigate family refusal in medical emergencies through a combination of legal, empirical and ethical approaches, which is highly relevant to the ongoing discussion about the place of informed consent in non-Western cultures. We first provide an overview of the Chinese legislation concerning informed consent to show the significance of family values in the context of medical decision-making and demonstrate the lack of legal support to override family refusal. Next, we present the findings of a vignette question that investigated how 11,771 medical professionals and 2,944 patients in China responded to the family refusal of emergency treatment for an unconscious patient. In our analysis of these results, we employ ethical reasoning to question the legitimacy of family refusal of life-sustaining emergency treatment for temporarily incompetent patients. Last, we examine some practical obstacles encountered by medical professionals wishing to override family refusal to give context to the discussion.     

Depression and Incident Dementia. An 8-Year Population-Based Prospective Study

Aims

The aim of the study was to investigate the impact of depression (categorical diagnosis; major depression, MD) and depressive symptoms (dimensional diagnosis and symptom patterns) on incident dementia in the German general population.

Methods

Within the Leipzig Longitudinal Study of the Aged (LEILA 75+), a representative sample of 1,265 individuals aged 75 years and older were interviewed every 1.5 years over 8 years (mean observation time 4.3 years; mean number of visits 4.2). Cox proportional hazards and binary logistic regressions were used to estimate the effect of baseline depression and depressive symptoms on incident dementia.

Results

The incidence of dementia was 48 per 1,000 person-years (95% confidence interval (CI) 45–51). Depressive symptoms (Hazard ratio HR 1.03, 95% CI 1.01–1.05), and in particular mood-related symptoms (HR 1.08, 95% CI 1.03–1.14), showed a significant impact on the incidence of dementia only in univariate analysis, but not after adjustment for cognitive and functional impairment. MD showed only a significant impact on incidence of dementia in Cox proportional hazards regression, but not in binary logistic regression models.

Discussion

The present study using different diagnostic measures of depression on future dementia found no clear significant associations of depression and incident dementia. Further in-depth investigation would help to understand the nature of depression in the context of incident dementia.