Caring for a relative with dementia: anticipatory grief and social death

The study derived its data from semi-structured interviews with 100 relatives of patients with a primary diagnosis of dementia. At the time of the interview, the dementia sufferer lived with the carer in 61 cases, in their own home in 16 cases, and in long-term institutional care in 23 cases. The interviews were based on a `Carers' Questionnaire' which has evolved via preliminary unstructured exploratory interviews with carers, followed by a pilot study employing an initial draft of the questionnaire. The study demonstrated that caregiving relatives generally acknowledged dementia to be an illness which would result in continued deterioration and death in the sufferer; that is, as a terminal illness, bringing both current and future losses. The emotional and behavioural reactions which previous studies have labelled `anticipatory grief' were experienced - to varying degrees - by the caregiving relatives of dementia sufferers. While partly simply a response to the burdens of the caregiving situation, they could also be attributed in part as the response to the loss of the person of the dementia sufferer. The majority of carers believed they had experienced grief, and the underlying structure of their reactions was similar to that of conventional grief. The results of the study showed that taken as whole, there was considerable stability in the emotional and behavioural reactions of the caregiving relatives of dementia sufferers over time. Against this background, there was a sub-group of approximately one-third of the sample of carers whose shock, or disbelief, or hope was greater earlier on in the process of their relatives' dementia, and whose acceptance of the illness and the future had increased over time. There was, however, no evidence of a phasic emergence of a variety of discrete stages in the carers' reactions, nor of an end-point of resolution or acceptance. The different components of the emotional and behavioural reactions of caregiving relatives were associated with different caregiver and sufferer characteristics. Initial shock was associated with learning the diagnosis and prognosis suddenly. Current carer shock, denial or hope were associated with sufferers who were younger, were spouses or siblings, and were demanding, with carers who were older, with less time since onset of the dementia. Protest, questioning and guilt were more likely in younger carers, those who perceived dementia as a horrible/worst illness, and those reporting a poor relationship with the sufferer. Reactions of yearning or preoccupation were more likely in carers who perceived dementia as a horrible/worst illness, and who were not helped by a religious or other belief. Carer depression was associated with demanding sufferer behaviour, perceiving dementia as a horrible/worst illness, and reporting a poor relationship with the sufferer. Finally, carer acceptance was more likely when they perceived dementia as the consequence of aging or just an illness, and when they had greater general knowledge regarding dementia. Whilst not labelling it as such, some carers did perceive their dementing relative in terms which could be regarded as `socially dead'. Three factors comprised the underlying structure of social death. Factor one, `Anticipate Death', relating to thinking in a variety of ways about the sufferer's death, had occurred for between half and three-quarters of the sample. `Anticipate Death' was associated with variables suggesting that the dementia sufferer had lived too long, and that the carer was fed up (angry or depressed) with the situation. Factor Two, `Life Pointless', relating to elements of social death such as believing that the sufferer's death would be a blessing, had occurred - to varying degrees - for at least half the sample. This was the only social death factor to be associated with a carer's belief that they had experienced grief. It was also related to a lack of carer hope or bargaining behaviours (perhaps representing the acceptance of the inevitability of the sufferer's decline), with increased sufferer dependency, with the carer's perception of dementia as a horrible/worst illness, and their reporting a poor relationship with the sufferer. Social Death Factor Three, `Sufferer Unaware', relating to sufferer lack of awareness of, and response to, their environment, was endorsed by the vast majority of the caregiver sample. It was associated with increased impairment in the sufferer (perhaps representing `loss of the person'). Those carer emotional and behavioural reactions most clearly representing distress were associated with increased subjective burden. Belief that they had experienced grief was associated with a reduction in a carer's perceived coping ability. None of the social death factors was linked to carer subjective burden or coping. Finally, with regard to institutionalisation, there was no evidence that placement in long-term care triggered either the social death of dementia sufferers or anticipatory grief in their relatives. Among community carers, preference for institutional care was not directly related to any of the anticipatory grief reactions. It was, however, associated with social death factor `Life Pointless'. This suggests that if a carer perceives the continuation of their dementing relative's life as meaningless, then the removal of the physical presence of the sufferer to institutional care may be more acceptable, or even welcomed

Explanations for female excess psychosomatic symptoms in adolescence: evidence from a school-based cohort in the West of Scotland

BACKGROUND: By mid adolescence there is an excess in female physical and/or psychosomatic, as well as psychological morbidity. This paper examines the contribution of a range of factors (self-esteem, body image, gender-role orientation, body mass index, smoking and physical activity) to explaining the female excess in three psychosomatic symptoms (headaches, stomach ache/sickness, and dizziness) and depressive mood at age 15. METHODS: A cohort of 2,196 school pupils (analyses restricted to 2,005 with complete data) surveyed at age 15. All measures were obtained via self-completion questionnaires, apart from body mass index, derived from measured height and weight. Analyses examined (a) sex differences in each potential explanatory factor; (b) their associations with the health measures; (c) the effect of adjustment for these factors on sex differences in the health measures; and (d) the existence of interactive effects between sex and the explanatory factors on the health measures RESULTS: Each potential explanatory factor was significantly differentiated by sex. Self-esteem, body image (represented by weight-related worries), smoking and physical activity were related to the health measures. These factors accounted for one third of the female excess in headaches and stomach problems, half the excess in dizziness and almost all that in respect of depressive mood. Self-esteem and body image were the factors most consistently related to health, and adjustment for these resulted in the largest reductions in the odds of a female excess in both the psychosomatic symptoms and depressive mood. CONCLUSION: Adjustment for a range of potential psychosocial and behavioural factors largely explains (statistically) excess female depressive mood. These factors also partially explain the female excess in certain psychosomatic symptoms

Changes in the socio-demographic patterning of late adolescent health risk behaviours during the 1990s: analysis of two West of Scotland cohort studies

Background: Substance use and sexual risk behaviour affect young people's current and future health and wellbeing in many high-income countries. Our understanding of time-trends in adolescent health-risk behaviour is largely based on routinely collected survey data in school-aged adolescents (aged 15 years or less). Less is known about changes in these behaviours among older adolescents. Methods: We compared two cohorts from the same geographical area (West of Scotland), surveyed in 1990 and 2003, to: describe time-trends in measures of smoking, drinking, illicit drug use, early sexual initiation, number of opposite sex sexual partners and experience of pregnancy at age 18-19 years, both overall and stratified by gender and socioeconomic status (SES); and examine the effect of time-trends on the patterning of behaviours by gender and SES. Our analyses adjust for slight between-cohort age differences since age was positively associated with illicit drug use and pregnancy. Results: Rates of drinking, illicit drug use, early sexual initiation and experience of greater numbers of sexual partners all increased significantly between 1990 and 2003, especially among females, leading to attenuation and, for early sexual initiation, elimination, of gender differences. Most rates increased to a similar extent regardless of SES. However, rates of current smoking decreased only among those from higher SES groups. In addition, increases in 'cannabis-only' were greater among higher SES groups while use of illicit drugs other than cannabis increased more in lower SES groups. Conclusion: Marked increases in female substance use and sexual risk behaviours have implications for the long-term health and wellbeing of young women. More effective preventive measures are needed to reduce risk behaviour uptake throughout adolescence and into early adulthood. Public health strategies should reflect both the widespread prevalence of risk behaviour in young people as well as the particular vulnerability to certain risk behaviours among those from lower SES groups

Is there an association between seeing incidents of alcohol or drug use in films and young Scottish adults' own alcohol or drug use? A cross sectional study

<p>Background: As the promotion of alcohol and tobacco to young people through direct advertising has become increasingly restricted, there has been greater interest in whether images of certain behaviours in films are associated with uptake of those behaviours in young people. Associations have been reported between exposure to smoking images in films and smoking initiation, and between exposure to film alcohol images and initiation of alcohol consumption, in younger adolescents in the USA and Germany. To date no studies have reported on film images of recreational drug use and young people's own drug use.</p> <p>Methods: Cross sectional multivariable logistic regression analysis of data collected at age 19 (2002-4) from a cohort of young people (502 boys, 500 girls) previously surveyed at ages 11 (in 1994-5), 13 and 15 in schools in the West of Scotland. Outcome measures at age 19 were: exceeding the 'sensible drinking' guidelines ('heavy drinkers') and binge drinking (based on alcohol consumption reported in last week), and ever use of cannabis and of 'hard' drugs. The principle predictor variables were an estimate of exposure to images of alcohol, and of drug use, in films, controlling for factors related to the uptake of substance use in young people.</p> <p>Results: A third of these young adults (33%) were classed as 'heavy drinkers' and half (47%) as 'binge drinkers' on the basis of their previous week's consumption. Over half (56%) reported ever use of cannabis and 13% ever use of one or more of the 'hard' drugs listed. There were linear trends in the percentage of heavy drinkers (p = .018) and binge drinkers (p = 0.012) by film alcohol exposure quartiles, and for ever use of cannabis by film drug exposure (p = .000), and for ever use of 'hard' drugs (p = .033). The odds ratios for heavy drinking (1.56, 95% CI 1.06-2.29 comparing highest with lowest quartile of film alcohol exposure) and binge drinking (1.59, 95% CI 1.10-2.30) were attenuated by adjustment for gender, social class, family background (parental structure, parental care and parental control), attitudes to risk-taking and rule-breaking, and qualifications (OR heavy drinking 1.42, 95% CI 0.95-2.13 and binge drinking 1.49, 95% CI 1.01-2.19), and further so when adjusting for friends' drinking status (when the odds ratios were no longer significant). A similar pattern was seen for ever use of cannabis and 'hard' drugs (unadjusted OR 1.80, 95% CI 1.24-2.62 and 1.57, 95% CI 0.91-2.69 respectively, 'fully' adjusted OR 1.41 (0.90-2.22 and 1.28 (0.66-2.47) respectively).</p> <p>Conclusions: Despite some limitations, which are discussed, these cross-sectional results add to a body of work which suggests that it is important to design good longitudinal studies which can determine whether exposure to images of potentially health-damaging behaviours lead to uptake of these behaviours during adolescence and early adulthood, and to examine factors that might mediate this relationship.</p&gt

GHQ increases among Scottish 15 year olds 1987–2006

BACKGROUND: Increases in a number of psychosocial disorders have been identified among Western youth in the second half of the Twentieth century. However findings are not consistent, trends are complex, and comparisons over time are hampered by methodological problems. METHODS: Data were drawn from three samples identical in respect of age (15 years), school year (final year of statutory schooling) and geographical location (the West of Scotland). Each sample was administered the 12-item General Health Questionnaire, a measure of self-report psychological distress, in 1987 (N = 505), 1999 (N = 2,196) and 2006 (N = 3,194). Analyses were conducted to examine changes in: GHQ 'caseness'; individual items; and factors, derived via confirmatory factor analysis representing (a) 'negative' and 'positive' items, and (b) 'anxiety and depression', 'loss of confidence or self-esteem' and 'anhedonia and social dysfunction'. RESULTS: Based on the standard (2/3) cut-off, 'caseness' rates in 1987, 1999 and 2006 were 12.7, 15.1 and 21.5% (males) and 18.8, 32.5 and 44.1% (females). Similar increases were observed with more stringent 'caseness' cut-offs. Examination of individual items showed some to have increased much more markedly over time than others. There were larger increases among females for all except two items and some evidence, among both genders, of steeper increases among 'negative' items compared with 'positive' ones. However, the differences in slope were very small compared with the overall increases in both types. CONCLUSIONS: Data from three samples identical in respect of age, school year and geographical location, show marked increases in GHQ-12 'caseness' among females between 1987 and 1999 and among both males and females between 1999 and 2006. Although slightly steeper increases in 'negative' items raise the possibility that endorsing such symptoms may have become more acceptable, these were small in comparison with increases in all dimensions of psychological distress. The next step is to identify causal explanations for the increases reported here

The emergence of health inequalities in early adulthood: evidence on timing and mechanisms from a West of Scotland cohort

Background Evidence is inconsistent as to whether or not there are health inequalities in adolescence according to socio-economic position (SEP) and whether or when they emerge in early adulthood. Despite the large health inequalities literature, few studies have simultaneously compared the relative importance of ?health selection? versus ?social causation? at this life-stage. This study followed a cohort through the youth-adult transition to: (1) determine whether, and if so, when, health inequalities became evident according to both class of origin and current SEP; (2) compare the importance of health selection and social causation mechanisms; and (3) investigate whether these phenomena vary by gender. Methods Data are from a West-of-Scotland cohort, surveyed five times between age 15 (in 1987, N=1,515, response=85%) and 36. Self-reported physical and mental health were obtained at each survey. SEP was based on parental occupational class at 15, a combination of own education or occupational status at 18 and own occupational class (with an additional non-employment category) at older ages. In respect of when inequalities emerged, we used the relative index of inequality to examine associations between both parental and own current SEP and health at each age. In respect of mechanisms, path models, including SEP and health at each age, investigated both inter and intra-generational paths from SEP to health (?causation?) and from health to SEP (?selection?). Analyses were conducted separately for physical and mental health, and stratified by gender. Results Associations between both physical and mental health and parental SEP were non-significant at every age. Inequalities according to own SEP emerged for physical health at 24 and for mental health at 30. There was no evidence of selection based on physical health, but some evidence of associations between mental health in early adulthood and later SEP (intra-generational selection). Paths indicated intra-generational (males) and inter-generational (females) social causation of physical health inequalities, and intra-generational (males and females) and inter-generational (females) social causation of mental health inequalities. Conclusions The results suggest complex and reciprocal relationships between SEP and health and highlight adolescence and early adulthood as a sensitive period for this process, impacting on future life-chances and health

Gendered dimensions of obesity in childhood and adolescence

BACKGROUND: The literature on childhood and adolescent obesity is vast. In addition to producing a general overview, this paper aims to highlight gender differences or similarities, an area which has tended not to be the principal focus of this literature. METHODS: Databases were searched using the terms 'obesity' and 'child', 'adolescent', 'teenager', 'youth', 'young people', 'sex', 'gender', 'masculine', 'feminine', 'male', 'female', 'boy' and 'girl' (or variations on these terms). In order to limit the potential literature, the main focus is on other reviews, both general and relating to specific aspects of obesity. RESULTS: The findings of genetic studies are similar for males and females, and differences in obesity rates as defined by body mass index are generally small and inconsistent. However, differences between males and females due to biology are evident in the patterning of body fat, the fat levels at which health risks become apparent, levels of resting energy expenditure and energy requirements, ability to engage in certain physical activities and the consequences of obesity for the female reproductive system. Differences due to society or culture include food choices and dietary concerns, overall physical activity levels, body satisfaction and the long-term psychosocial consequences of childhood and adolescent obesity. CONCLUSION: This review suggests differences between males and females in exposure and vulnerability to obesogenic environments, the consequences of child and adolescent obesity, and responses to interventions for the condition. A clearer focus on gender differences is required among both researchers and policy makers within this field

Selective Serotonin Reuptake Inhibitor (SSRI) Antidepressants in Pregnancy and Congenital Anomalies: Analysis of Linked Databases in Wales, Norway and Funen, Denmark

Background: Hypothesised associations between in utero exposure to selective serotonin reuptake inhibitors (SSRIs) and congenital anomalies, particularly congenital heart defects (CHD), remain controversial. We investigated the putative teratogenicity of SSRI prescription in the 91 days either side of first day of last menstrual period (LMP). Methods and Findings: Three population-based EUROCAT congenital anomaly registries- Norway (2004–2010), Wales (2000–2010) and Funen, Denmark (2000–2010)—were linked to the electronic healthcare databases holding prospectively collected prescription information for all pregnancies in the timeframes available. We included 519,117 deliveries, including foetuses terminated for congenital anomalies, with data covering pregnancy and the preceding quarter, including 462,641 with data covering pregnancy and one year either side. For SSRI exposures 91 days either side of LMP, separately and together, odds ratios with 95% confidence intervals (ORs, 95%CI) for all major anomalies were estimated. We also explored: pausing or discontinuing SSRIs preconception, confounding, high dose regimens, and, in Wales, diagnosis of depression. Results were combined in meta-analyses. SSRI prescription 91 days either side of LMP was associated with increased prevalence of severe congenital heart defects (CHD) (as defined by EUROCAT guide 1.3, 2005) (34/12,962 [0.26%] vs. 865/506,155 [0.17%] OR 1.50, 1.06–2.11), and the composite adverse outcome of 'anomaly or stillbirth' (473/12962, 3.65% vs. 15829/506,155, 3.13%, OR 1.13, 1.03–1.24). The increased prevalence of all major anomalies combined did not reach statistical significance (3.09% [400/12,962] vs. 2.67% [13,536/506,155] OR 1.09, 0.99–1.21). Adjusting for socio-economic status left ORs largely unchanged. The prevalence of anomalies and severe CHD was reduced when SSRI prescriptions were stopped or paused preconception, and increased when >1 prescription was recorded, but differences were not statistically significant. The dose-response relationship between severe CHD and SSRI dose (meta-regression OR 1.49, 1.12–1.97) was consistent with SSRI-exposure related risk. Analyses in Wales suggested no associations between anomalies and diagnosed depression. Conclusion: The additional absolute risk of teratogenesis associated with SSRIs, if causal, is small. However, the high prevalence of SSRI use augments its public health importance, justifying modifications to preconception care

International genome-wide meta-analysis identifies new primary biliary cirrhosis risk loci and targetable pathogenic pathways.

Primary biliary cirrhosis (PBC) is a classical autoimmune liver disease for which effective immunomodulatory therapy is lacking. Here we perform meta-analyses of discovery data sets from genome-wide association studies of European subjects (n=2,764 cases and 10,475 controls) followed by validation genotyping in an independent cohort (n=3,716 cases and 4,261 controls). We discover and validate six previously unknown risk loci for PBC (Pcombined<5 × 10(-8)) and used pathway analysis to identify JAK-STAT/IL12/IL27 signalling and cytokine-cytokine pathways, for which relevant therapies exist