Patients with acute exacerbation of chronic obstructive pulmonary disease feel safe when treated at home: a qualitative study

ABSTRACT: BACKGROUND: The design of new interventions to improve health care for patients with chronic obstructive pulmonary disease (COPD) requires knowledge about what patients with an acute exacerbation experience as important and useful. The objective of the study was to explore patients' experiences of an early discharge hospital at home (HaH) treatment programme for exacerbations in COPD. METHODS: Six exacerbated COPD patients that were randomised to receiving HaH care and three patients randomised to receiving traditional hospital care were interviewed in semi-structured in-depth interviews. Four spouses were present during the respective patients' interviews. The interviews were audio-taped, transcribed and analysed by a four-step method for systematic text condensing. RESULTS: Despite limited assistance from the health care service, the patients and their spouses experienced the HaH treatment as safe. They expressed that information that was adapted to specific situations in their daily lives and given in a familiar environment had positive impact on their self-management of COPD. CONCLUSION: The results contribute to increased knowledge and awareness about what the patients experienced as important aspects of a HaH treatment programme. How adapted input from health services can make patients with exacerbation of COPD feel safe and better able to manage their disease, is important knowledge for developing new and effective health services for patients with chronic disease.     

Effectiveness of peer-led self-management coaching for patients recently diagnosed with Type 2 diabetes mellitus in primary care: a randomized controlled trial

Diabet. Med. 29, e390-e397 (2012) SUMMARY: Aims To study the effectiveness of a peer-led self-management coaching intervention in recently diagnosed patients with Type 2 diabetes. Methods Randomized controlled trial of recently diagnosed patients with Type 2 diabetes from 54 participating general practices. The intervention group received three home visits by an experienced peer (expert patient) who adhered to the recommended treatment and lifestyle guidelines. Together with their expert patient, participants set feasible goals and these were evaluated in the next visit. Participants in the control group received care as usual. At baseline, 3?months and 6?months post-intervention, participants completed a questionnaire measuring changes in self-efficacy, coping, physical activity, dietary habits, psychological well-being, depressive symptoms and diabetes related distress. Results In total, 327 patients were eligible for inclusion in the study of which 133 consented to participate. In participating patients, self-efficacy, coping and saturated fat intake improved significantly over time. Analyses of participants with low self-efficacy at baseline (25th percentile: 44) revealed a significant time?×?group difference, F?=?3.71; P?=?0.03. Participants who reported low psychological well-being at baseline increased substantially throughout the study (F?=?23.84; P?相似文献   

Health-related quality of life in the patients on maintenance hemodialysis: the analysis of demographic and clinical factors

Health-related quality of life (HRQoL) among hemodialysis (HD) patients recently became a nephrologist's focus of interest. HRQoL is an important predictor of outcome in HD patients and need to be regularly assessed. The aim of the present study was to compare the HRQoL of chronic HD patients with general population and to analyze influencing sociodemographic and clinical factors. We included 255 prevalent HD patients from four dialysis centers. HRQoL was measured with The Medical Outcomes Study Short Form 36 Health Survey Questionnaire (SF-36). This data were compared with control group (N = 132) from the general Croatian population. Comparisons of SF-36 scale scores of HD patients regarding demographic and clinical factors (age, gender, education level, dialysis vintage and diabetes) were also performed and analyzed with a multivariate regression analysis. HRQoL in prevalent HD patients was relatively low (mean Physical Component Summary, PCS = 33.7, mean Mental Component Summary, MCS = 43.0) and was lower compared to the control group from the general population in all HRQoL domains, PCS and MCS scores. Almost 53% of the HD patients had the critical score PCS < 43 + MCS < 51 as the predictor of death and hospitalization. Better HRQoL was revealed in the patients < 65 years old, males, patients with higher educational level and in the patients on maintenance HD less than one year. Age was the only statistically significant predictor of PCS and MCS. Developments of HD technology, treatment of comorbidities, continuous patients' education, social and psychological support and use of other renal replacement modalities, especially kidney transplantation, may improve the HRQoL in these patients.     

Psychological rehabilitation after myocardial infarction: multicentre randomised controlled trial.

OBJECTIVE: To evaluate rehabilitation after myocardial infarction. DESIGN: Randomised controlled trial of rehabilitation in unselected myocardial infarction patients in six centres, baseline data being collected on admission and by structured interview (of patients and spouses) shortly after discharge and outcome being assessed by structured interview at six months and clinical examination at 12 months. SETTING: Six district general hospitals. SUBJECTS: All 2328 eligible patients admitted over two years with confirmed myocardial infarction and discharged home within 28 days. INTERVENTIONS: Rehabilitation programmes comprising psychological therapy, counselling, relaxation training, and stress management training over seven weekly group outpatient sessions for patients and spouses. MAIN OUTCOME MEASURES: Anxiety, depression, quality of life, morbidity, use of medication, and mortality. RESULTS: At six months there were no significant differences between rehabilitation patients and controls in reported anxiety (prevalence 33%) or depression (19%). Rehabilitation patients reported a lower frequency of angina (median three versus four episodes a week), medication, and physical activity. At 12 months there were no differences in clinical complications, clinical sequelae, or mortality. CONCLUSIONS: Rehabilitation programmes based on psychological therapy, counselling, relaxation training, and stress management seem to offer little objective benefit to patients who have experienced myocardial infarction compared with previous reports of smaller trials.     

Spillover effects of retirement: Does health vulnerability matter?

The current literature investigating the impact of retirement and the associated spousal spillover effects overlooks the unintended effects of retirement on spouses in vulnerable health, namely spouses with long-term health conditions (LTHCs). In this paper, we fill this gap in the literature and investigate the impact of an individual’s retirement on their partner’s health outcomes when their partner has LTHCs. Given the inherent identification challenges associated with entry into retirement, we use the pension-qualifying age in Australia as an instrument. Based on data from the Household Income and Labour Dynamics in Australia survey, we find that the husband’s retirement has a positive impact on the wife’s quality-adjusted life years (QALY) and other physical and mental health outcomes. We also identify redistribution of domestic workload as a key transmission mechanism of the spousal spillover effects. Women with LTHCs will see their QALY and health improve only if their husband devotes more time to domestic tasks after retirement.     

Does Gender Moderate Factors Associated with Whether Spouses Are the Sole Providers of IADL Care to Their Partners?

We explored whether gender moderated the influence of other factors on solo spousal caregiving. The subsample (N = 452) from the AHEAD study included elderly care recipients (CRs) receiving IADL assistance and their spouses. Logistic regression modeled the likelihood of solo spousal IADL care. Gender moderation was tested by product terms between CRs' gender and measures of partners' health, potential helpers, and sociodemographic characteristics. As numbers of CRs' IADLs and couples' proximate daughters increased, wives less often received care solely from their husbands, but husbands' receipt of care from their wives was unaffected. Age differences between spouses and CRs affected solo spousal caregiving to wives and husbands in opposite ways. Regardless of gender, CRs' number of ADL limitations and spouses with IADL or ADL limitations reduced the likelihood of solo spouse care. Identifying circumstances influencing solo spouse caregiving differently among couples with frail wives and husbands facilitates gender sensitive services.     

REMCARE: Pragmatic Multi-Centre Randomised Trial of Reminiscence Groups for People with Dementia and their Family Carers: Effectiveness and Economic Analysis

BackgroundJoint reminiscence groups, involving people with dementia and family carers together, are popular, but the evidence-base is limited. This study aimed to assess the effectiveness and cost-effectiveness of joint reminiscence groups as compared to usual care.MethodsThis multi-centre, pragmatic randomised controlled trial had two parallel arms: intervention group and usual-care control group. A restricted dynamic method of randomisation was used, with an overall allocation ratio of 1:1, restricted to ensure viable sized intervention groups. Assessments, blind to treatment allocation, were carried out at baseline, three months and ten months (primary end-point), usually in the person''s home. Participants were recruited in eight centres, mainly through NHS Memory Clinics and NHS community mental health teams. Included participants were community resident people with mild to moderate dementia (DSM-IV), who had a relative or other care-giver in regular contact, to act as informant and willing and able to participate in intervention. 71% carers were spouses. 488 people with dementia (mean age 77.5)were randomised: 268 intervention, 220 control; 350 dyads completed the study (206 intervention, 144 control). The intervention evaluated was joint reminiscence groups (with up to 12 dyads) weekly for twelve weeks; monthly maintenance sessions for further seven months. Sessions followed a published treatment manual and were held in a variety of community settings. Two trained facilitators in each centre were supported by volunteers. Primary outcome measures were self-reported quality of life for the person with dementia (QoL-AD), psychological distress for the carer (General Health Questionnaire, GHQ-28). Secondary outcome measures included: autobiographical memory and activities of daily living for the person with dementia; carer stress for the carer; mood, relationship quality and service use and costs for both.ResultsThe intention to treat analysis (ANCOVA) identified no differences in outcome between the intervention and control conditions on primary or secondary outcomes (self-reported QoL-AD mean difference 0.07 (-1.21 to 1.35), F = 0.48, p = 0.53). Carers of people with dementia allocated to the reminiscence intervention reported a significant increase in anxiety on a General Health Questionnaire-28 sub-scale at the ten month end-point (mean difference 1.25 (0.25 to 2.26), F = 8.28, p = 0.04). Compliance analyses suggested improved autobiographical memory, quality of life and relationship quality for people with dementia attending more reminiscence sessions, however carers attending more groups showed increased care-giving stress. Economic analyses from a public sector perspective indicated that joint reminiscence groups are unlikely to be cost-effective. There were no significant adverse effects attributed to the intervention. Potential limitations of the study include less than optimal attendance at the group sessions—only 57% of participants attended at least half of the intervention sessions over the 10 month period, and a higher rate of study withdrawal in the control group.ConclusionsThis trial does not support the clinical effectiveness or cost-effectiveness of joint reminiscence groups. Possible beneficial effects for people with dementia who attend sessions as planned are offset by raised anxiety and stress in their carers. The reasons for these discrepant outcomes need to be explored further, and may necessitate reappraisal of the movement towards joint interventions.

Trial Registration

ISRCTN Registry ISRCTN42430123     

Effect of a training programme to reduce stress in carers of patients with dementia.

OBJECTIVE--To reduce the psychological stress and improve the skills in coping of people who care for relatives with dementia. DESIGN--Assessment and suitability of carers by questionnaire; assessment of patients and carers in a hospital outpatient clinic; allocation to groups according to date of application to study. Linkage of groups of four carers and programme coordinator by telephone conference calls over 12 months after programmes. Reassessment at three, six, 12, and, for those in the "wait list" group, 18 months. SETTING--The programmes were conducted in the psychiatry unit of a Sydney teaching hospital. SUBJECTS--Eligible patients were less than 80 years old, had mild to moderate dementia, and lived at home with their carer. Of the 96 patient-carer pairs in the study, 33 were in the dementia carers'' programme group, 31 were in the memory retraining group, and 32 were in the wait list group. INTERVENTIONS--Carers in the dementia carers'' programme received training in coping with the difficulties of looking after patients with dementia while the patients had sessions in subjects such as memory retraining. In the memory retraining programme patients were admitted and received the patient component of the carers'' programme while their carers had 10 days'' respite. In the wait list group carers waited six months before undertaking the carers'' programme. MAIN OUTCOME MEASURES--Effect of the programmes on carers'' general health questionnaire scores and the rate of placement of patients in institutions. RESULTS--At 12 months'' follow up the carers'' programme had resulted in significantly lower psychological stress among carers than the memory retraining programme (mean (SD) general health questionnaire scores at 0 months were 6.31 (6.23) and 3.60 (6.25) respectively, and at 12 months were 4.69 (5.58) and 7.40 (9.39); p less than 0.05.) In the wait list group distress scores remained stable, even after the carers and patients had undertaken the carers'' programme. Patients deteriorated over 12 months regardless of group allocation, but at 30 months, allowing for patients who died and could not be included in the analysis, 65% of patients in the carers'' programme group were still living at home compared with 26% in the memory retraining programme group. CONCLUSION--The intensive intervention programme described for carers of patients with dementia can reduce the psychological morbidity of the carer and delay the placement of the patient in an institution without increasing the use of health services by either patient or carer.     

Primary care management for optimized antithrombotic treatment [PICANT]: study protocol for a cluster-randomized controlled trial

ABSTRACT: BACKGROUND: Antithrombotic treatment is a continuous therapy that is often performed in general practice and requires careful safety management. The aim of this study is to investigate whether a best practice model that applies major elements of case management, including patient education, can improve antithrombotic management in primary health care in terms of reducing major thromboembolic and bleeding events. METHODS: This 24-month cluster-randomized trial will be performed in 690 adult patients from 46 practices. The trial intervention will be a complex intervention involving general practitioners, health care assistants and patients with an indication for oral anticoagulation. To assess adherence to medication and symptoms in patients, as well as to detect complications early, health care assistants will be trained in case management and will use the Coagulation-Monitoring-List (Co-MoL) to regularly monitor patients. Patients will receive information (leaflets and a video), treatment monitoring via the Co-MoL and be motivated to perform self-management. Patients in the control group will continue to receive treatment-as-usual from their general practitioners. The primary endpoint is the combined endpoint of all thromboembolic events requiring hospitalization, and all major bleeding complications. Secondary endpoints are mortality, hospitalization, strokes, major bleeding and thromboembolic complications, severe treatment interactions, the number of adverse events, quality of anticoagulation, health-related quality of life and costs. Further secondary objectives will be investigated to explain the mechanism by which the intervention is effective: patients' assessment of chronic illness care, self-reported adherence to medication, general practitioners' and health care assistants' knowledge, patients' knowledge and satisfaction with shared decision making. Practice recruitment is expected to take place between July and December 2012. Recruitment of eligible patients will start in July 2012. Assessment will occur at three time points: baseline (T0), follow-up after 12 (T1) and after 24 months (T2). DISCUSSION: The efficacy and effectiveness of individual elements of the intervention, such as antithrombotic interventions, self-management concepts in orally anticoagulated patients and the methodological tool, case-management, have already been extensively demonstrated. This project foresees the combination of several proven instruments, as a result of which we expect to profit from a reduction in the major complications associated with antithrombotic treatment.     

Marital assortment for genetic similarity

The present study involved analyses of a Caucasian American sample (n=949) and a Japanese American sample (n=400) for factors supporting Genetic Similarity Theory (GST). The analyses found no evidence for the presence of genetic similarity between spouses in either sample for the blood group analyses of nine loci. All results indicated random mating for blood group genes. The results did not provide consistent substantial support to show that spousal similarity is correlated with the degree of genetic component of a trait for a set of seventeen individual differences variables, with only the Caucasian sample yielding significant correlations for this analysis. A third analysis examining the correlation between presence of spousal genetic similarity and spousal similarity on observable traits was not performed because spousal genetic similarity was not observed in either sample. The overall implication of the study is that GST is not supported as an explanation for spousal similarity in humans.     

The Life Cycle, Ecological, and Economic Determinants of Spousal Leisure Sharing: Panel Estimations from Tawahka Amerindians, Honduras

Researchers have used the amount of leisure as a yardstick to proxy for quality of life, but so far they have paid scant attention to the quality of leisure. Here I use spousal leisure sharing to proxy for quality of leisure and, by implication, for quality of life. I draw on life-cycle perspective, price theory, and on human ecology to frame hypotheses about the determinants of spousal leisure sharing. Drawing on longitudinal information collected over 2 years from 32 households in two villages of Tawahka Amerindians, a horticultural and foraging society in the tropical rain forest of eastern Honduras, I estimate the simultaneous effects of age and age squared, cash income, and climatic/seasonal variables on the amount of time spouses spend together in leisure. Analysis using different random and fixed-effect multivariate logit models suggests that (1) life-cycle determinants play a strong role in spousal leisure sharing and (2) neither climate/seasonal variables nor income correlate with spousal leisure sharing. As is true among couples in the United States, among Tawahka couples a change in the income of either spouse has a small effect on the amount of leisure shared by spouses. I find no evidence that economic development erodes spousal leisure sharing or that couples exhibit fissure in their pursuit of a common goal of leisure sharing.     

NOTHING BUT THE TRUTH? ON TRUTH AND DECEPTION IN DEMENTIA CARE

Lies and deception are often used in the care for demented elderly and often with the best intentions. However, there is a strong moral presumption against all forms of lying and deceiving. The goal of this article is to examine and evaluate concrete examples of deception and lies in dementia care, while addressing some fundamental issues in the process. It is argued that because dementia slowly diminishes the capacities one needs to distinguish between truths and falsehoods, the ability to be lied to also disappears. When the moral reasons to reject lying are explored, it becomes clear that most of them also hold where demented patients are concerned, though this also depends on the capacities of the patient. Lying, though prima facie wrong, can sometimes be justified with an appeal to well-being. The relationship between well-being and the truth is further explored. Two examples of deceiving demented patients for reasons of beneficence are discussed, from which it can be concluded that although in some cases beneficent lies or deception will not enhance patients' well-being, there are circumstances in which they do. In general, methods that enhance the well-being of the patient without deception or lies should be favored above options that use deceit, and methods of getting the truth across without hurting the patient should be favored above blunt honesty Finally it is important to note that not only the patient but also the nursing and medical staff can be affected by the use of lies and deception.     

Effecten van een integrale wijkaanpak genaamd ‘Even Buurten’ op de (gezondheidsgerelateerde) kwaliteit van leven en welzijn van ouderen

Integrated neighborhood approaches (INAs) are increasingly advocated to support community-dwelling older people; their effectiveness however remains unknown. We evaluated INA effects on older people’s (health-related) quality of life (HRQoL) and well-being in Rotterdam. We used a matched quasi-experimental design comparing INA with “usual” care and support. Community-dwelling people (aged ≥70) and control subjects (n?=?186 each) were followed over a one-year period (measurements at baseline, 6 and 12 months). Primary outcomes were HRQoL (EQ-5D-3L, SF-20) and well-being (SPF-IL). The effect of INA was analysed with generalized linear mixed modeling of repeated measurements, using both an “intention to treat” and “as treated” approach. The results indicated that pre-intervention participants were significantly older, more often single, less educated, had lower incomes and more likely to have ≥1 disease than control subjects; they had lower well-being, physical functioning, role functioning, and mental health. No substantial difference in well-being or HRQoL was observed between the intervention and control group after 1 year. The lack of effects of INA highlights the complexity of integrated care and support initiatives.     

Efficacies of the new Paclitaxel-eluting Coroflex Please™ Stent in percutaneous coronary intervention; comparison of efficacy between Coroflex Please™ and Taxus™ (ECO-PLEASANT) trial: study rationale and design

Background

Almost 50% of Americans have elevated low-density lipoprotein cholesterol (LDL-C). The behaviors required to lower LDL-C levels may be difficult to adhere to if they are inconsistent with spouses' health practices, and, alternatively, may be enhanced by enlisting support from the spouse. This trial extends previous trials by requiring spouse enrollment, teaching spouses how to provide emotional and instrumental support, allowing patients to decide which component of the intervention they would like to receive, and having patients determine their own goals and action plans.

Methods

Veteran outpatients with above-goal LDL-C (N = 250) and their spouses are randomized, as a couple, to receive printed education materials only or the materials plus an 11-month, nurse-delivered, telephone-based intervention. The intervention contains four modules: medication adherence, diet, exercise, and patient-physician communication. Patients decide which modules they complete and in which order; modules may be repeated or omitted. Telephone calls are to patients and spouses separately and occur monthly. During each patient telephone call, patients' progress is reviewed, and patients create goals and action plans for the upcoming month. During spouse telephone calls, which occur within one week of patient calls, spouses are informed of patients' goals and action plans and devise strategies to increase emotional and instrumental support. The primary outcome is patients' LDL-C, measured at baseline, 6 months, and 11 months. Linear mixed models will be used to test the primary hypothesis that an 11-month, telephone-based patient-spouse intervention will result in a greater reduction in LDL-C as compared to printed education materials. Various process measures, including social support, self-efficacy, medication adherence, dietary behavior, and exercise, are also assessed to explain any change, or lack thereof, in LDL-C.

Discussion

Given the social context in which self-management occurs, interventions that teach spouses to provide instrumental and emotional support may help patients initiate and adhere to behaviors that lower their LDL-C levels. Moreover, allowing patients to retain autonomy by deciding which behaviors they would like to change and how may improve adherence and clinical outcomes.

Trial Registration

The ClinicalTrials.gov registration number is NCT00321789.     

Atherogenic lipoprotein profile in families with and without history of early myocardial infarction

In this study we compared several parameters characterizing differences in the lipoprotein profile between members of families with a positive or negative family history of coronary artery disease (CAD). In addition to regular parameters such as the body mass index (BMI), total plasma cholesterol (TC), low density (LDL-C) and high density (HDL-C) cholesterol and triglycerides (TG) we estimated the fractional esterification rate of cholesterol in apoB lipoprotein-depleted plasma (FER(HDL)) which reflects HDL and LDL particle size distribution. A prevalence of smaller particles for the atherogenic profile of plasma lipoproteins is typical. Log (TG/HDL-C) as a newly established atherogenic index of plasma (AIP) was calculated and correlated with other parameters. The cohort in the study consisted of 29 young (< 54 years old) male survivors of myocardial infarction (MI), their spouses and at least one offspring (MI group; n=116). The control group consisted of 29 apparently healthy men with no family history of premature CAD in three generations, their spouses and at least one offspring (control group; n=124). MI families had significantly higher BMI than the controls, with the exception of spouses. Plasma TC did not significantly differ between MI and the controls. MI spouses had significantly higher TG. Higher LDL-C had MI survivors only, while lower HDL-C had both MI survivors and their spouses compared to the controls. FER(HDL) was significantly higher in all the MI subgroups (probands 25.85+/-1.22, spouses 21.55+/-2.05, their daughters 16.93+/-1.18 and sons 19.05+/-1.33 %/h) compared to their respective controls (men 20.80+/-1.52, spouses 14.70+/-0.98, daughters 13.23+/-0.74, sons 15.7+/-0.76 %/h, p<0.01 to p<0.05). Log(TG/HDL-C) ranged from negative values in control subjects to positive values in MI probands. High correlation between FER(HDL) and Log (TG/HDL-C) (r=0.80, p<0.0001) confirmed close interactions among TG, HDL-C and cholesterol esterification rate. The finding of significantly higher values of FER(HDL) and Log (TG/HDL-C) indicate higher incidence of atherogenic lipoprotein phenotype in members of MI families. The possibility that, in addition to genetic factors, a shared environment likely contributes to the familial aggregation of CAD risk factors is supported by a significant correlation of the FER(HDL) values within spousal pairs (control pairs: r=0.51 p<0.01, MI pairs: r=0.41 p<0.05).     

Mate selection in man: Evidence,theory, and outcome

Abstract

This review presents a comprehensive survey of the literature on mate selection and non‐random mating in man. The topics discussed include: (1) genetic aspects of non‐random mating for complex traits; (2) evidence on resemblance between spouses on a large variety of traits such as intelligence, personality, physical characteristics, and sociocultural traits; (3) a critical review of sociological and psychological theories offered to account for assortative mating, and (4) implications of assortative mating for marital satisfaction. It is suggested that the factors leading to choice of marriage partners need to be studied from the point of view of multivariate profiles rather than single traits. Such studies will require sophisticated methodologies of research design and data analysis.     

Alzheimer's disease multiple intervention trial (ADMIT): study protocol for a randomized controlled clinical trial

ABSTRACT: BACKGROUND: Given the current lack of disease-modifying therapies, it is important to explore new models of longitudinal care for older adults with dementia that focus on improving quality of life and delaying functional decline. In a previous clinical trial, we demonstrated that collaborative care for Alzheimer's disease reduces patients' neuropsychiatric symptoms as well as caregiver stress. However, these improvements in quality of life were not associated with delays in subjects' functional decline. Trial design Parallel randomized controlled clinical trial with 1:1 allocation. Participants A total of 180 community-dwelling patients aged [greater than or equal to]45 years who are diagnosed with possible or probable Alzheimer's disease; subjects must also have a caregiver willing to participate in the study and be willing to accept home visits. Subjects and their caregivers are enrolled from the primary care and geriatric medicine practices of an urban public health system serving Indianapolis, Indiana, USA. Interventions All patients receive best practices primary care including collaborative care by a dementia care manager over two years; this best practices primary care program represents the local adaptation and implementation of our prior collaborative care intervention in the urban public health system. Intervention patients also receive in-home occupational therapy delivered in twenty-four sessions over two years in addition to best practices primary care. The focus of the occupational therapy intervention is delaying functional decline and helping both subjects and caregivers adapt to functional impairments. The in-home sessions are tailored to the specific needs and goals of each patient-caregiver dyad; these needs are expected to change over the course of the study.Objective To determine whether best practices primary care plus home-based occupational therapy delays functional decline among patients with Alzheimer's disease compared to subjects treated in the control group. Outcomes The primary outcome is the Alzheimer's Disease Cooperative Studies Group Activities of Daily Living Scale; secondary outcome measures are two performance-based measures including the Short Physical Performance Battery and Short Portable Sarcopenia Measure. Outcome assessments for both the caregiver-reported scale and subjects' physical performance scales are completed in the subject's home. Randomization Eligible patient-care giver dyads will be stratified by clinic type and block randomized with a computer developed randomization scheme using a 1:1 allocation ratio. Blinding Single blinded. Research assistants completing the outcome assessments were blinded to the subjects' treatment group. Trial status Ongoing ClinicalTrial.Gov identifier NCT01314950; date of completed registration 10 March 2011; date first patient randomized 9 March 2011.     

Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel

This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups (POs) in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, with the only Israeli PO focusing strongly on caretakers, whereas in Germany several POs claim to represent this patient collective. Shared aims of all POs were fighting social stigma, balancing the loss of patients’ individual autonomy, and the well-being of caretakers. By highlighting the emergence of new groups of dementia self-advocacy against the more traditional advocacy by others, this study highlights how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception. Future developments in early diagnosis and prediction of dementia, with more affected people likely to conduct dementia self-advocacy, might challenge existing representation structures even more.     

La participación de personas con demencia en las reuniones del plan de atención individualizada: impacto en el bienestar y la calidad del cuidado

Introduction

An individualised intervention plan (IIP) offers a new paradigm in the care of the elderly with dementia, with the aim of increasing their quality of life through personalisation, respect for their freedom, and their participation in the decisions that affect their lives.

Objective

To evaluate the impact of the residential home patient with dementia and their quality of care when they take part in the interdisciplinary meeting in which their care plan is decided.

Material and methods

A total of 52 elderly patients with dementia took part in the study. They were distributed into two groups, one experimental (37 residents) and another control (15 residents). The Dementia Care Mapping (DCM) tool was used to assess the well-being and quality of care of the residents. This tool was used twice, before and after the intervention.

Results

The well-being of the resident, evaluated using the DCM, was similar before and after the intervention in the experimental group. No differences were observed either on comparing the control and experimental groups. However, some indicators of carer behaviour were different before and after the intervention, and when the control and experimental group were compared.

Conclusion

The inclusion of elderly persons with dementia in their IIP meeting had a positive effect in the interaction of the staff with the residents, but not on the well-being of the resident.     

Effects of social interaction on well-being: development aspects.

The scientific need for nonhuman primates that are born and raised in captivity seems certain to increase and with it, the concern for managing the social development of individual animals so as to maximize their utility throughout a potentially long career. This practical objective is not only compatible with a concern for psychological well-being, but presupposes similar aims and criteria. For both concerns the most reliable guidelines are derived from basic research. The data available indicate that primate social development is directional, proceeding from extreme dependence on care-givers initially (subserved by mother-directed behaviors) toward relative autonomy and adult competence (dominated by other-directed behaviors). Individuals are not passive recipients at any point in this process, rather they are active participants in their development, engaged with their surroundings and responding selectively to what the environment affords. From this standpoint, developmental effects are the outcome of transactions with the environment. They are emergent phenomena, neither wholly independent of environmental influences, nor completely determined by them. It follows that the long-range utility and well-being of captive animals will be served well if they are able to select those with whom they will interact and modes of interaction that are appropriate to their level of development and current motivational state. This can generally be accomplished by permitting individuals to develop, at least through weaning, in the company of their biologic mothers within an approximation of a species-normal social group. When such latitude is impossible, the social environment should be arranged with the individuals' developmental levels as a primary concern.