Dualities of dementia illness narratives and their role in a narrative economy

The concept of ‘narrative economies’ has recently been proposed as a set of exchange relationships that, through biography and story‐telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre‐existing group of dementia advocates, representing the voices of those living with the condition. There are a growing number of people in the early stages of dementia – like our participants – being called upon to account for their experience, as a means of developing a politicised ‘collective illness identity’. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.     

Diet,exercise and dementia: The potential impact of a Mediterranean diet pattern and physical activity on cognitive health in a UK population

Diet and physical activity play key roles in maintaining health and preventing or delaying disease. The global prevalence of dementia, an umbrella term describing a set of symptoms which affect cognitive function, is set to rise dramatically by 2050, with current drug treatments inadequate. Diet and physical activity are modifiable factors in dementia, influencing both disease risk and pathophysiology. It has been known since the 1950s that a Mediterranean diet has positive health benefits. Over the past 25 years, a causal link has been shown between consumption of a Mediterranean diet and decreased risk of cardiovascular disease, particularly in Mediterranean countries. There have also been indications that a Mediterranean diet and increased physical activity can improve cognitive health and delay the onset of dementia. However, causative demonstrations of these effects, as well as the feasibility of implementing such lifestyle changes in a non‐Mediterranean population, are lacking. The new MedEx‐UK programme will attempt to address both these points.     

肺炎克雷伯菌致新生儿腹泻爆发的报告

20 0 1年 7～ 8月从 7例新生儿腹泻的粪便及外环境中 ,分离出 2 9株肺炎克雷伯菌 ,现报告如下。1.临床资料 :女婴 3例、男婴 4例。年龄为 3～ 13ｄ。均有发热、腹胀 ,最高体温 39.3℃ ,腹泻 3～ 6次 日。起初大都为褐色水样便 ,继之为黄色水样及粘液脓样便。其中 2例患儿呕吐严重 ,出现脱水及抽搐。未发现败血症型与死亡病例。2 .细菌学培养与鉴定 :将粪便与外环境标本 (用无菌棉拭子蘸取肉汤培养基 ,于产床及桌面等表面涂擦后 ) ,接种于ＳＳ琼脂和麦康凯琼脂平板并于无菌肉汤中继续增菌培养。35℃ 2 4ｈ后 ,可见直径 3～ 4ｍｍ高凸、灰白色…     

‘The living death of Alzheimer's’ versus ‘Take a walk to keep dementia at bay’: representations of dementia in print media and carer discourse

Understanding dementia is a pressing social challenge. This article draws on the ‘Dementia talking: care conversation and communication’ project which aims to understand how talk about, and to people living with dementia is constructed. In this article I draw on the construction of dementia manifest in two data sets – a corpus of 350 recent UK national newspaper articles and qualitative data derived from in‐depth interviews with informal carers. These data were analysed using a thematic discursive approach. A ‘panic‐blame’ framework was evident in much of the print media coverage. Dementia was represented in catastrophic terms as a ‘tsunami’ and ‘worse than death’, juxtaposed with coverage of individualistic behavioural change and lifestyle recommendations to ‘stave off’ the condition. Contrary to this media discourse, in carers' talk there was scant use of hyperbolic metaphor or reference to individual responsibility for dementia, and any corresponding blame and accountability. I argue that the presence of individualistic dementia ‘preventative’ behaviour in media discourse is problematic, especially in comparison to other more ‘controllable’ and treatable chronic conditions. Engagement with, and critique of, the nascent panic‐blame cultural context may be fruitful in enhancing positive social change for people diagnosed with dementia and their carers.     

Asian Americans’ concerns and plans about Alzheimer's disease: The role of exposure,literacy and cultural beliefs

Responding to the increase of the Asian American population and the growing imperative to address issues on Alzheimer's disease (AD) in diverse populations, this study examined Asian Americans’ concerns about AD (both concerns about one's own development of AD and about becoming an AD caregiver) and plans for AD. Focus was given on exploring the role of AD exposure, AD literacy and cultural beliefs about AD in predicting AD‐related concerns and plans. Using data from 2,609 participants in the 2015 Asian American Quality of Life survey (aged 18–98), logistic regression models of three outcome measures (concerns about one's own development of AD, concerns about becoming an AD caregiver and plans about AD) were estimated. AD exposure and literacy (perceived knowledge and awareness of services) were common predictors of all three outcomes. Beliefs that associate AD with a normal part of ageing and a matter of fate increased the odds of having AD concerns. The odds of having AD plans were found to be higher among those with such concerns. Findings not only identified the factors associated with the concerns and plans about AD but also informed ways to develop targeted AD interventions for Asian Americans.     

Consensus views on advance care planning for dementia: a Delphi study

The uptake of advance care planning (ACP) is particularly low among people with dementia. This may reflect barriers to communication between professionals, patients and families in the face of lack of consensus about the process. This study aimed to methodically investigate consensus views of how ACP should be explained and carried out with people with dementia. A three‐round Delphi study explored views of how and when ACP should be addressed, what should be covered, who should be involved and why rates of ACP are low. Seventeen participants took part comprising family members, old age psychiatrists and policy makers. Thirty‐two items reached consensus. The panel agreed on 11 different areas for discussion. They concurred that ACP was best addressed after the person has come to terms with the diagnosis when the individual feels ready to do so. There was a consensus view that the process should be couched in terms of ‘certain possibilities’. Consensus items emphasised personal choice and autonomy, while also prioritising the need to discuss financial aspects and to include spouses. There was no consensus that professionals should be involved, although the panel viewed them as carrying some responsibility for low uptake. It is suggested that ACP should include general discussion of values as well as coverage of specific points. Professionals need to offer discussion and information on ACP, but also make clear that the patient has the right to choose whether to pursue ACP or not.     

Evaluating satisfaction with maternity care in women from minority ethnic communities: development and validation of a Sylheti questionnaire.

OBJECTIVE: To develop a reliable and valid questionnaire to evaluate satisfaction with maternity care in Sylheti-speaking Bangladeshi women. DESIGN: Two-stage, psychometric study. Firstly, focus groups, in-depth interviews and iterative methods for translation and cultural adaptation were used to develop a Sylheti questionnaire, called the survey of Bangladeshi women's experience of maternity services from an English language questionnaire. Secondly, quantitative psychometric methods were used to field test and evaluate the acceptability, reliability and validity of this questionnaire. SETTING: Four hospitals providing maternity services in London, UK. STUDY PARTICIPANTS: Two hundred and forty-two women from the London Bangladeshi communities, who were in the antenatal (at least 4 months pregnant) or postnatal phase (up to 6 months after delivery). Women spoke Sylheti; a language with no accepted written form. Two purposive samples of 40 women in the antenatal or postnatal phase, one convenience sample of six women in the antenatal phase and three consecutve samples of 60 women in the postnatal phase participated in stage one. In stage two, 135 women (main sample) completed the questionnaire two months after delivery (82% response rate); 50 women (retest sample) from the main sample completed a second questionnaire two weeks later (96% response rate). MAIN OUTCOME MEASURES: Women's views about maternity care elicited by qualitative methods and measured quantitatively using the survey of Bangladeshi women's experience of maternity services. RESULTS: The 121-item questionnaire was acceptable to women and showed good internal consistency (Cronbach's alphas 0.76-0.91), stability (test-retest reliability 0.72-0.84) and construct validity (e.g. able to detect group differences). CONCLUSION: By combining qualitative and quantitative methods, it is possible to adapt an instrument to provide an acceptable, reliable and valid Sylheti questionnaire. The approach taken in developing this questonnaire provides a model for developing outcome measures for use with other minority ethnic communities.     

Patient access to healthcare services and optimisation of self-management for ethnic minority populations living with diabetes: a systematic review

A higher risk of diabetes mellitus in South Asian and Black African populations combined with lower reported access and self-management-related health outcomes informed the aims of this study. Our aims were to synthesise and evaluate evidence relating to patient self-management and access to healthcare services for ethnic minority groups living with diabetes. A comprehensive search strategy was developed capturing a full range of study types from 1995-2010, including relevant hand-searched literature pre-dating 1995. Systematic database searches of MEDLINE, Cochrane, DARE, HTA and NHSEED, the British Nursing Index, CAB abstracts, EMBASE, Global Health, Health Management Information Consortium and PsychInfo were conducted, yielding 21,288 abstracts. Following search strategy refinement and the application of review eligibility criteria; 11 randomised controlled trials (RCTs), 18 qualitative studies and 18 quantitative studies were evaluated and principal results extracted. Results suggest that self-management practices are in need of targeted intervention in terms of patients' knowledge and understanding of their illness, inadequacy of information and language and communication difficulties arising from cultural differences. Access to health-care is similarly hindered by a lack of cultural sensitivity in service provision and under use of clinic-based interpreters and community-based services. Recommendations for practice and subsequent intervention primarily rest at the service level but key barriers at patient and provider levels are also identified.     

Potential barriers to the use of health services among ethnic minorities: a review

BACKGROUND: Ethnic minority patients seem to be confronted with barriers when using health services. Yet, care providers are often oblivious to these barriers, although they may share to some extent the burden of responsibility for them. In order to enlighten care providers, as to the potential pitfalls that may exist, there is a need to explore the different factors in the creation of the barriers. OBJECTIVE: Therefore, the objective of this paper is to present an overview of the potential barriers and the factors, which may restrict ethnic minority patients from using health services, according to the literature available. METHODS: Articles published from 1990 to 2003 were identified by searching electronic databases and selected through titles and abstracts. The articles were included if deemed to be relevant to study health services use by ethnic minorities, i.e. the different factors in the creation of a barrier. RESULTS: There were 54 articles reviewed. They reported on studies carried out in different countries and among different ethnic minorities. Potential barriers occurred at three different levels: patient level, provider level and system level. The barriers at patient level were related to the patient characteristics: demographic variables, social structure variables, health beliefs and attitudes, personal enabling resources, community enabling resources, perceived illness and personal health practices. The barriers at provider level were related to the provider characteristics: skills and attitudes. The barriers at system level were related to the system characteristics: the organisation of the health care system. CONCLUSION: This review has the goal of raising awareness about the myriad of potential barriers, so that the problem of barriers to health care for different ethnic minorities becomes transparent. In conclusion, there are many different potential barriers of which some are tied to ethnic minorities. The barriers are all tied to the particular situation of the individual patient and subject to constant adjustment. In other words, generalizations should not be made.     

The Ageing Gut–Brain study: Exploring the role of the gut microbiota in dementia

Up to 90% of people with dementia will experience behavioural and psychological symptoms of dementia (BPSD) as part of their illness, and nearly two‐thirds of those living with dementia in care homes will experience BPSD. BPSD describe the disturbed perceptions, thought content, moods or behaviours that frequently occur in patients with dementia. There is increasing evidence that the gut microbiota plays a role in the interaction between specific nutrients and brain function. The Ageing Gut–Brain study described here is based on the hypothesis that the gut microbiota, and microbial metabolites, impact upon the gut–brain axis and thereby on behaviour, including BPSD. In the absence of available cures for Alzheimer's disease and its symptoms, if evidence in support of the gut–brain axis hypothesis is found, diet/nutritional interventions comprising important modifiable component/s may have significant impact on the management of BPSD.     

Perceptions of illness in individuals with anorexia nervosa: a comparison with lay men and women

OBJECTIVE: The current study examined and compared perceptions of illness in individuals with anorexia nervosa (AN) and lay men and women. METHOD: Participants with AN (n = 95) completed the Revised Illness Perception Questionnaire (IPQ-R). Lay participants (n = 80) completed a modified IPQ-R to elicit perceptions of AN. RESULTS: Participants with AN viewed their illness as chronic and highly distressing, with strong negative consequences. They had fairly negative perceptions of illness controllability and curability, which contrasted with the more optimistic beliefs held by lay participants. Both groups implicated emotional and psychological causes. DISCUSSION: The profile of illness perceptions expressed by the AN sample is associated with poor mental health and functioning and may inform the treatment approach. Lay perceptions of AN differed in the conceptualization of AN as a "slimming disease" amenable to change. This discrepancy may contribute to the stigmatization of AN.     

Analysis of discrete phenotypes using a multipoint identity-by-descent method: Application to Alzheimer's disease

The multipoint identity-by-descent method was developed to detect linkage to a specific chromosomal region through partitioning the genetic variance. This method has previously been applied to quantitative traits, and here is extended to a qualitative trait, where a dichotomous affected/unaffected status variable is transformed to a quantitative variable by incorporating covariates. This method is applied to the Alzheimer's disease data sets from Genetic Analysis Workshop 8, to investigate putative linkage to chromosomes 19 and 21. The multipoint identity-by-descent method is used to test for linkage through the qualitative trait, and for excess sharing of the chromosomal region among affected sibs. Results are compared to those of the affected-pedigree-member method and classical linkage analysis. None of these methods gave results showing clear linkage, with the only marginally significant results occurring for the Boston data set on chromosome 19 and the Duke data set for chromosome 21 using the multipoint identity-by-descent method. © 1993 Wiley-Liss, Inc.     

Zinc diet and Alzheimer's disease: a systematic review

Abstract

Objectives

This paper reviews evidence of an association between zinc (Zn) nutrition and Alzheimer's disease (AD) or age-associated cognitive decline. The involvement of zinc in the pathology of AD has been reported hundreds of times. It is, however, still a matter of debate whether the disease progression can be influenced by modifying zinc in the diet.

Methods

We searched Medline, Embase, Biosis, ALOIS, the Cochrane central register of controlled trials, the Cochrane database of systematic reviews, and different publisher databases, and included studies that dealt with zinc in the diet and AD or cognitive decline in elderly subjects.

Results

Fifty-five studies met the inclusion criteria. Neither randomized-controlled trials nor observational studies provide conclusive evidence whether Zn in the diet is associated with cognitive decline or AD. Case-control and autopsy studies suggest decreased systemic and increased brain Zn levels, respectively.

Discussion

The current state of evidence does not allow conclusions to be drawn on whether supplementation of Zn is beneficial for the prevention or treatment of AD, although a subclinical deficiency appears common in the elderly and subjects with AD. Dietary studies with animals suggest that the impact of dietary Zn on cognitive performance depend on additional nutrients. Further studies are necessary to determine whether Zn deficiency is a risk factor for AD in general terms or under certain dietary circumstances only.     

(In)visible materialities in the context of dementia care

Seemingly mundane materialities are intertwined with important, but often neglected, care interactions. It has been argued that if healthcare professionals paid more attention to the roles materialities can have, everyday routines could become important occasions for care. In response to such proposals, we argue that it is relevant to examine how materialities are currently understood. In this article, we explore materialities as part of work in a dementia unit. Using abstracted illustrations of everyday materialities to elicit reflections, we conducted 11 individual interviews with certified nursing assistants. Through phenomenographic analysis we explain our findings as three different categories conceptualising understandings of materialities as: ‘tools for care’, ‘a set of principles for care’ and ‘caring relationships’. Our analysis indicates that understanding materialities as instruments was reinforced and made visible through the healthcare organisation while understanding materialities as part of specific relationships with residents appeared informal and less visible. How materialities were understood seemed to have several implications for residents. While care practices could benefit from nursing assistants’ abilities to alternate between ways of understanding materialitites, such competence seemed dependent on how professional care was organised, structured and materialised.