Multimodal home care intervention for dependent older people “Live better at home”: Protocol of a randomized clinical trial

BackgroundThe intensity of the home care interventions for dependent older people offered in Spain may not be sufficient to help keep older people living at home, being the institutionalization in a nursing home (NH) an unavoidable consequence.ObjectiveTo evaluate the effect of intensification in home care interventions on users with grade II or III dependency, as well as training for their informal caregivers in order to delay or avoid their institutionalization in a NH.MethodsA randomized clinical trial with two parallel arms and blinded assessment will be conducted at the community level in two municipalities in Catalonia (Spain). The study will include those older people (aged 65 and over) living in the community, with degree II or III of dependency, users of the public home care unwilling to be institutionalized and with a main informal caregiver in charge, who will also participate in the study. The assessments will be performed monthly up to 15 months, when the intervention will be finished. The main outcome will be the time until the willingness for admission to a NH. Secondary variables will be composed of sociodemographic, health, psychosocial, resource use, and follow-up variables. A multivariate Cox regression model will be carried out to estimate the effectiveness of the intervention.DiscussionA multimodal home care intervention could improve the health and psychosocial status of dependent people and their informal caregivers and facilitate their permanence at home.Trial registrationNCT05567965     

Responsibilities in elderly care: Mr Powell's narrative of duty and relations

In Western countries a considerable number of older people move to a residential home when their health declines. Institutionalization often results in increased dependence, inactivity and loss of identity or self-worth (dignity). This raises the moral question as to how older, institutionalized people can remain autonomous as far as continuing to live in line with their own values is concerned. Following Walker's meta-ethical framework on the assignment of responsibilities, we suggest that instead of directing all older people towards more autonomy in terms of independence, professional caregivers should listen to the life narrative of older people and attempt to find out how their personal identity, relations and values in life can be continued in the new setting. If mutual normative expectations between caregivers and older people are not carefully negotiated, it creates tension. This tension is illustrated by the narrative of Mr Powell, a retired successful public servant now living in a residential home. The narrative describes his current life, his need for help, his independent frame of mind, and his encounters with institutional and professional policies. Mr Powell sees himself as a man who has always cared for himself and others, and who still feels that he has to fulfil certain duties in life. Mr Powell's story shows that he is not always understood well by caregivers who respond from a one-sided view of autonomy as independence. This leads to misunderstanding and an underestimation of his need to be noticed and involved in the residential community.     

LIVING TO THE BITTER END? A PERSONALIST APPROACH TO EUTHANASIA IN PERSONS WITH SEVERE DEMENTIA

The number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way to avoid total deterioration. In this article, we discuss some practical and ethical dilemmas regarding euthanasia in persons with severe dementia based on an advance euthanasia directive. We are using a personalist approach in dealing with these ethical dilemmas.     

Problemen en wensen van mantelzorgers van mensen met dementie: een vergelijking tussen de beginfase en latere fasen in het ziekteproces

This paper investigates whether informal caregivers of persons who have had symptoms of dementia for less than a year, differ from informal caregivers of persons in subsequent stages of dementia. Differences will be investigated in (a) problems experienced in the provision of informal care, (b) the use of ambulatory types of professional support, and (c) the need for additional professional support. Results are based on a survey among 1494 Dutch informal caregivers. Almost all informal caregivers experience problems in caring for a person with dementia, irrespective of the stage of the illness process. Their main problems concern dealing with changes in the behaviour of the person with dementia and dreading the person's admission to a nursing home. Informal caregivers of persons who have had symptoms of dementia for a longer period of time (> 1 year) also experience limitations in their social network. Most persons with dementia receive some kind of professional support. Still, the majority of informal caregivers indicate a need for additional professional support, mainly concerning advice and information. Limiting the available support options for persons with initial symptoms of dementia and their informal caregivers is therefore undesirable. Considering the need for additional support in the initial stage of dementia as well as in subsequent stages, persons with dementia and their informal caregivers should be supported during the entire illness process.     

A trial on unruptured intracranial aneurysms (the TEAM trial): results, lessons from a failure and the necessity for clinical care trials

Background

There is a large treatment gap with few community services for people with schizophrenia in low income countries largely due to the shortage of specialist mental healthcare human resources. Community based rehabilitation (CBR), involving lay health workers, has been shown to be feasible, acceptable and more effective than routine care for people with schizophrenia in observational studies. The aim of this study is to evaluate whether a lay health worker led, Collaborative Community Based Care (CCBC) intervention, combined with usual Facility Based Care (FBC), is superior to FBC alone in improving outcomes for people with schizophrenia and their caregivers in India.

Methods/Design

This trial is a multi-site, parallel group randomised controlled trial design in India. The trial will be conducted concurrently at three sites in India where persons with schizophrenia will be screened for eligibility and recruited after providing informed consent. Trial participants will be randomly allocated in a 2:1 ratio to the CCBC+FBC and FBC arms respectively using an allocation sequence pre-prepared through the use of permuted blocks, stratified within site. The structured CCBC intervention will be delivered by trained lay community health workers (CHWs) working together with the treating Psychiatrist. We aim to recruit 282 persons with schizophrenia. The primary outcomes are reduction in severity of symptoms of schizophrenia and disability at 12 months. The study will be conducted according to good ethical practice, data analysis and reporting guidelines.

Discussion

If the additional CCBC intervention delivered by front line CHWs is demonstrated to be effective and cost-effective in comparison to usually available care, this intervention can be scaled up to expand coverage and improve outcomes for persons with schizophrenia and their caregivers in low income countries.

Trial registration

The trial is registered with the International Society for the Registration of Clinical Trials and the allocated unique ID number is ISRCTN 56877013.     

Health-related quality of life and associated factors among Onchocerciasis patients in southeast Nigeria: A cross-sectional comparative study

IntroductionOnchocerciasis, a neglected tropical disease of public health importance, causes chronic morbidity and severe disability that may impact on health-related quality of life (HRQoL) of the infected people. This study assessed the HRQoL and associated factors among onchocerciasis patients in southeast Nigeria.MethodsThis was a community-based cross-sectional comparative study. Using a multistage sampling technique, 340 onchocerciasis patients were selected and matched for age and gender with the healthy population in the same neighbourhood. The respondents were interviewed using the short-form-36 (SF-36) questionnaire to determine their HRQoL. WHO Disability Assessment Schedule 2.0 tool (WHODAS 2.0) was used to assess disability in persons with onchocerciasis. Means were compared with independent student t-test while Chi-square test was used to compare proportions. Also, correlation analysis and logistic regression were used in the analyses.ResultsA significantly lower proportion of people living with onchocerciasis had a good quality of life when compared with the healthy subjects (69.4% vs 93.5%, p<0.001). Also, an inverse relationship was seen between disability and quality of life in the onchocerciasis group (r = -0.647, p<0.001). Predictors of poor quality of life among respondents with onchocerciasis were: respondents aged ≥48 years (AOR = 2.5, 95% CI: 1.4–5.0), those with some disability associated with onchocerciasis (AOR = 3.33, 95%CI: 1.4–5.0) and respondents who perceived themselves as a burden to people (AOR = 10, 95%CI: 2.5–20).ConclusionOnchocerciasis impacted negatively on HRQoL of persons with onchocerciasis when compared with the healthy population. The quality of life of persons affected with onchocerciasis reduces with increasing disability. There is the need to increase community awareness on onchocerciasis to ensure early diagnosis and prompt treatment as this will reduce disability among those affected with the disease thus enhancing their HRQoL.     

Life- and person-centred help in Mecklenburg-Western Pomerania, Germany (DelpHi): study protocol for a randomised controlled trial

ABSTRACT: BACKGROUND: The provision of appropriate medical and nursing care for people with dementia is a major challenge for the healthcare system in Germany. New models of healthcare provision need to be developed, tested and implemented on the population level. Trials in which collaborative care for dementia in the primary care setting were studied have demonstrated its effectiveness. These studies have been conducted in different healthcare systems, however, so it is unclear whether these results extend to the specific context of the German healthcare system. The objective of this population-based intervention trial in the primary care setting is to test the efficacy and efficiency of implementing a subsidiary support system on a population level for persons with dementia who live at home. Methods and study design The study was designed to assemble a general physician-based epidemiological cohort of people above the age of 70 who live at home (DelpHi cohort). These people are screened for eligibility to participate in a trial of dementia care management (DelpHi trial). The trial is a cluster-randomised, controlled intervention trial with two arms (intervention and control) designed to test the efficacy and efficiency of implementing a subsidiary support system for persons with dementia who live at home. This subsidiary support system is initiated and coordinated by a dementia care manager: a nurse with dementia-specific qualifications who delivers the intervention according to a systematic, detailed protocol. The primary outcome is quality of life and healthcare for patients with dementia and their caregivers. This is a multidimensional outcome with a focus on four dimensions: (1) quality of life, (2) caregiver burden, (3) behavioural and psychological symptoms of dementia and (4) pharmacotherapy with an antidementia drug and prevention or suspension of potentially inappropriate medication. Secondary outcomes include the assessment of dementia syndromes, activities of daily living, social support health status, utilisation of health care resources and medication. DISCUSSION: The results will provide evidence for specific needs in ambulatory care for persons with dementia and will show effective ways to meet those needs. Qualification requirements will be evaluated, and the results will help to modify existing guidelines and treatment paths. Trial registration NCT01401582.     

Traumatic Brain Injury: Unmet Support Needs of Caregivers and Families in Florida

Sustaining a Traumatic Brain Injury results in familial strain due to the significant impact the injury has upon the role and function of individuals and their families at home and in the community. Using the Stress Process Model of Caregiving, a caregiver needs assessment survey was developed and conducted to better understand the needs of individuals with a Traumatic Brain Injury and their caregivers. Survey results indicate that caregivers experience many challenges including unmet needs in areas of relational supports such as maintaining relationships, long-term emotional and financial support for themselves and the survivor, and the need for a patient or caregiver advocate. Implications for future practice are presented.     

Community care and social services.

The aim of community care is to enable people with various types of disability to live in their own homes, rather than in institutions. This involves the provision of support and services at home by various agencies. After a critical report in 1986 identified problems with coordination and flexibility of community care services, the white paper Caring for People (1989) stated the government''s aim to provide a "needs led," responsive range of services, promoting maximum independence of those wishing to live at home rather than enter institutional care. New arrangements were introduced in 1993, involving a formal assessment procedure and the production of a personalized care plan for each individual, incorporating services provided by private and voluntary agencies as well as by social services departments. This article describes the components of community care services supplied by local social services authorities, including housing adaptations, equipment, telephones and alarms, home care, meals, and respite care.     

Tracking subtle stereotypes of children with trisomy 21: from facial-feature-based to implicit stereotyping

Background

Stigmatization is one of the greatest obstacles to the successful integration of people with Trisomy 21 (T21 or Down syndrome), the most frequent genetic disorder associated with intellectual disability. Research on attitudes and stereotypes toward these people still focuses on explicit measures subjected to social-desirability biases, and neglects how variability in facial stigmata influences attitudes and stereotyping.

Methodology/Principal Findings

The participants were 165 adults including 55 young adult students, 55 non-student adults, and 55 professional caregivers working with intellectually disabled persons. They were faced with implicit association tests (IAT), a well-known technique whereby response latency is used to capture the relative strength with which some groups of people—here photographed faces of typically developing children and children with T21—are automatically (without conscious awareness) associated with positive versus negative attributes in memory. Each participant also rated the same photographed faces (consciously accessible evaluations). We provide the first evidence that the positive bias typically found in explicit judgments of children with T21 is smaller for those whose facial features are highly characteristic of this disorder, compared to their counterparts with less distinctive features and to typically developing children. We also show that this bias can coexist with negative evaluations at the implicit level (with large effect sizes), even among professional caregivers.

Conclusion

These findings support recent models of feature-based stereotyping, and more importantly show how crucial it is to go beyond explicit evaluations to estimate the true extent of stigmatization of intellectually disabled people.     

Kwaliteit van leven bij dementie

Different definitions of quality of life (QOL) are found in the literature. This raised the question which domains are viewed as really important by persons with dementia. In an explorative study the opinions of persons with dementia (community-dwelling and living in nursing homes), were compared to those of professional carers and instruments for QOL in dementia. Data were gathered through interviews, focus groups and literature study. Most QOL-domains mentioned as important by persons with dementia were also acknowledged by carers and in measurement instruments. Some domains, however, were not mentioned by the carers (‘sense of aesthetics’, ‘financial situation’, ‘being useful’ and ‘spirituality’), or not selected in the measuring instruments (‘security and privacy’, ‘self-determination and freedom’, ‘being useful’ and ‘spirituality’). This indicates differences in perspectives on quality of life between persons with dementia, professional caregivers and researchers. Subsequently it was studied to what degree professionals focus on the QoL-domains that persons with dementia consider essential. Caregivers working on 29 units and 3 day care facilities of 13 nursing homes and in 12 meeting centers filled out a questionnaire (N=374). They reported to focus at least to some degree on most domains considered important by persons with dementia. However, little attention was paid to the domains ‘financial situation’ and ‘being useful’. Professionals offering daytime activities focused more than 24-hour care staff on ‘attachment’, ‘enjoyment of activities’, ‘sense of aesthetics’, and ‘being useful’ This article is a translation and merging of 1) Dröes et al. Quality of life in dementia in perspective; an explorative study of variations in opinions among people with dementia and their professional caregivers, and in literature. Dementia: The International Journal 2006; 5 (4): 533–558, and 2) Gerritsen et al. Differences in perspective: do professional caregivers focus on the Quality of life domains that are important for people with dementia? American Journal of Alzheimer’s Disease and Other Dementias 2007; 22:176–183.     

Depression and other psychiatric morbidity in carers of elderly people living at home.

OBJECTIVE--To describe the mental health of a community sample of carers of elderly people with dementia, depression, or physical disability and to compare that with the mental health of other adults living in the household and of those living alone. DESIGN--Assessment of psychiatric morbidity and physical disability with standardised questionnaire in randomly selected enumeration districts; subjects were interviewed at home. SETTING--London Borough of Islington. SUBJECTS--700 people aged > or = 65 and other coresidents. MAIN OUTCOME MEASURE--Depression measured with standardised interview. RESULTS--The prevalence of depression was not significantly higher in carers overall (15%) than in coresidents (11%). Being a woman carer was a significant predictor of psychiatric illness. Depression was more common in the carers of people with a psychiatric disorder than in coresidents (24% v 11%, P < 0.05) and in those living alone (19%). Depression was most common (47%) in women carers of people with dementia. CONCLUSION--The increase in psychiatric morbidity reported in carers of people with psychiatric disorders may reflect the lack of a confiding relationship.     

Caring for Caregivers of People Living with HIV in the Family: A Response to the HIV Pandemic from Two Urban Slum Communities in Pune,India

Introduction

In low resource settings, the vast majority of ‘Person/people Living with HIV’ (PLHIV/s) and inadequate healthcare delivery systems to meet their treatment and care needs, caregivers play a vital role. Home based caregivers are often unrecognized with limited AIDS policies and programs focusing on them. We explored the perceptions and norms regarding care being provided by family caregivers of PLHIVs in India.

Methodology

A community based qualitative study to understand the issues pertaining to home based care for PLHIV was conducted in urban settings of Pune city, in Maharashtra, India. Eight Focus Group Discussions (FGDs) among men, women and peer educators were carried out. A total of 44 in-depth Interviews (IDIs) with PLHIVs (20) and their caregivers (24), were conducted using separate guides respectively. Data was analyzed thematically.

Results

Home based care was perceived as economically viable option available for PLHIVs. ‘Care’ comprised of emotional, adherence, nursing and financial support to PLHIV. Home based care was preferred over hospital based care as it ensured confidentiality and patient care without hampering routine work at home. Women emerged as more vital primary caregivers compared to men. Home based care for men was almost unconditional while women had no such support. The natal family of women also abandoned. Their marital families seemed to provide support. Caregivers voiced the need for respite care and training.

Discussion

Gender related stigma and discrimination existed irrespective of women being the primary family caregivers. The support from marital families indicates a need to explore care and support issues at natal and marital homes of the women living with HIV respectively. Home based care training and respite care for the caregivers is recommended. Gender sensitive interventions addressing gender inequity and HIV related stigma should be modeled while designing interventions for PLHIVs and their family caregivers.     

Public Opinion About Laws to Prohibit Weight Discrimination in the United States

Weight discrimination is pervasive in American society and impairs quality of life for obese persons. With approximately two‐thirds of Americans now overweight or obese, vast numbers of people are vulnerable to weight prejudice and its consequences. Currently, no laws exist to prohibit weight discrimination. This study conducted an online survey with a national sample of 1,001 adults (representing demographics of the United States) to examine public support for six potential legislative measures to prohibit weight discrimination in the United States. Results indicated substantial support (65% of men, 81% of women) for laws to prohibit weight discrimination in the workplace, especially for legal measures that would prohibit employers from refusing to hire, terminate, or deny promotion based on a person's body weight. Laws that proposed extending the same protections to obese persons as people with physical disabilities received the least support, suggesting that Americans may not be in favor of considering obesity as a disability. Findings also highlight specific predictors of support (related to sex, age, education, income, body weight, and political ideology). These findings can be used to inform policy makers in efforts to develop antidiscrimination laws. Such measures will rectify health disparities for overweight Americans and facilitate public health efforts to address obesity.     

Family solidarity and informal care: the case of care for people with dementia

According to Bayertz the core meaning of solidarity is the perception of mutual obligations between the members of a community. This definition leaves open the various ways solidarity is perceived by individuals in different communities and how it manifests itself in a particular community. This paper explores solidarity as manifested in the context of families in respect of caregiving for a family member who has become dependent because of disease or illness. Though family caregiving is based on the same perception of mutual obligation as the solidarity that supports welfare arrangements in society, the manifestation of solidarity in families is different. Solidarity that underpins welfare arrangements is based on a perception of mutual obligation towards an anonymous dependent other and is enforced by the government. Solidarity in families is directed towards a concrete other and is based on free choice, albeit often accompanied by a strong sense of personal duty. In this paper we try to distinguish between solidarity as a sociological concept and as a moral concept. An important moral element of solidarity, as expressed in families, is the need for recognition of family caregivers, not only of their concrete practical efforts, but also of their own identity as caregivers and as individuals. We illustrate this argument by referring to examples in the Nuffield Council on Bioethics report Dementia: ethical issues, about the experiences of family caregivers in dementia care and the importance for them of recognition of their role.     

Quality of life in people with physical disabilities

The aim of this study was to examine the possible differences in self-reported quality of life of people with physical disabilities with regard to both socio-demographic and disability-related characteristics. Testing was conducted on 153 respondents with physical disabilities, residents of the City of Zagreb. Positive correlations were found between the quality of life and income satisfaction, residence size (per capita floor area) and level of residence equipment. Multivariate analysis of variance showed statistically significant differences in quality of life among respondents with regard to the marital status, work status and home ownership. Statistically significant differences in the quality of life were found among the participants depending on their level of physical mobility and type of physical disability. The level of physical mobility is associated with general satisfaction with the accomplishment of goals, aspirations and hopes. The type of physical disability is related to the satisfaction with leisure activities, with the material status, expectations to achieve in the future what has not formerly been achieved. There was also a significant relation between the type of physical disability and general satisfaction with life in the past year. Positive correlations between duration of disability and quality of life were found. Membership in associations of persons with physical disability and related benefits were shown to contribute to the quality of life.     

CIRDO: Smart companion for helping elderly to live at home for longer

Cirdo project is intended to establish new healthcare systems to ensure the safety at home of seniors and people with decreasing independence. In particular, extending “e-lio footnote http://www.technosens.fr/” devise, Cirdo aims to develop an audio/video-based system which makes it possible for elderly to live with a sufficient degree of autonomy. To achieve this goal, generic purposes on video analysis and audio processing are discussed and implemented in the same process. Audio and video analysis algorithms are launched simultaneously and thinks to GPU implementation, the tasks are done in real time. To comply with the requirements set out in the Cirdo project namely: respect privacy and preserve personal data, the processing tasks is performed through background tasks, without any human intrusion. In order to have different types of fall for our experiences, multiple scenarios were designed and performed by several persons. Besides the technical aspect, the project also focuses on generic technology validation by potential users and their human environment (family, caregivers/care takers…). Psychological and ergonomic assessment on the use of services developed was conducted. It focused on the usefulness, usability and accessibility and acceptance of the tool. This evaluation was completed by critical investigation of knowledge acquired by professionals (geriatricians, caregivers school and associations).     

Met and unmet needs of dependent older people according to the Camberwell Assessment of Need for the Elderly (CANE): A scoping review

In order to address the complexity of needs of dependent older people, multidimensional and person-centered needs assessment is required. The objective of this review is to describe met and unmet needs of dependent older people, living in the community or in institutions, and the factors associated with those needs. Selection criteria included papers about need asessment which employed the Camberwell Assesment of Need for the Elderly (CANE). A search through MEDLINE, SCOPUS, WOS and CINHAL databases was carried out. Twenty-one articles were finally included. Unmet needs were found more frequently in psychosocial areas (mainly in “company”, “daytime activities” and “psychological distress”) and in institutionalized population. In addition, unmet needs were often associated with depressive symptoms, dependency, and caregiver burden. Discrepancies between self-reported needs and needs perceived by formal and informal caregivers were identified. It is important that professionals and caregivers try to make visible the perspective of older people and their psychological and social needs, particularly when the person is dependent, depressed or cognitively impaired.     

La nouvelle Loi handicap

Although, over the centuries, disabled persons have been successively considered to be an image of evil, pity, or sin, what image and what rights are provided by the French law of 11/02/2005 on equal rights, participation and citizenship of disabled persons? Isn’t there still an enormous gap between written laws and what really happens in everyday life, as dozens of laws have been added since the first law voted in the 19th century? The vocabulary has also changed over the years from mutilated, to handicapped, to disabled. The marked differences between official figures and figures derived from the HID (Handicap Independence Incapacity) survey conducted between 1998 and 2001, clearly illustrates the difficulty of defining disability. With ageing of the French population aging and improvement of technologies, the number of disable persons will increase considerably over the years to come. Does the new law of 11/02/2005 provide a solution to this urgent situation? Has it identified all of the problems concerning accessibility, human assistance, schooling, rights of the disabled or is it just another law on disability, which is more useful to the legislator than to the people concerned? The new law focuses on four points. First of all, the right to compensation by creating a disability pension, which replaces third party benefits and professional fees benefits and adult disability pension, the right to schooling for all disabled children, the right to employment, and finally the creation of departmental disability centres, staffed by the various actors currently involved in the care of the disabled (Conseil Général, DDASS, CPAM, CAF, etc...). Creation of the disability pension is now based on five main types of assistance: human assistance, technical assistance, adaptation of the home and the vehicle as well as excess transport costs, animal assistance, and finally exceptional and specific aids. Apart from direct assistance to disabled persons, the new law is also designed to improve accessibility (law and decrees already in application since 1991 and 1994) to transport, public places, etc. However, the law also gives another definition of accessibility by extending its scope to all aspects of disability (motor, sensory, cognitive, mental, etc.). This accessibility must be implemented within defined deadlines: 3 years for transport, 5 years for universities and prefectures, and 10 years for other public buildings. Another innovation of this law is that of the initial training and continuing education of healthcare professionals of the medical and social sector (cause of disability, therapeutic innovations, educational innovations, reception and supportive care of disabled persons, announcement of disability, etc.). However, as so little progress has been made the over the centuries, many disabled people will be left by the wayside. Although politicians have now become aware of the problem, the errors, delays, and imperfections of this new law will allow tolerance rather than insertion of the disabled in the years to come. We must develop a different vision of disability, as illustrated by the creation, in 2002, of a European Commission network called “Design for All” to develop systems that can be used by healthy as well as disabled persons. Disabled persons are also trying to find solutions concerning parenthood and childbirth, as although the law has defined “all” aspects for healthy parents with a disabled child, no measures have been taken for disabled parents. The Mother-Child Department of the Institut Mutualiste Montsouris is developing a programme for these future parents with the help of ESCAVIE (Espace Conseil pour l’autonomie en milieu ordinaire de vie) in collaboration with the occupational therapist and social worker. A disabled parents association has also been formed in the Mother-Child Department. A last point does not directly concern the new law, but the bioethics law of August 2004 and preimplantation diagnosis, which was the subject of a recent debate concerning its revision. The old myth of birth control has resurfaced. Unfortunately politicians collude with the media to present this stereotyped image of the perfect, beautiful, normal baby.