Literature review : use of respite by carers of people with dementia

Respite care is a cornerstone service for the home management of people with dementia. It is used by carers to mitigate the stress related to the demands of caring by allowing time for them to rest and do things for themselves, thus maintaining the caring relationship at home and perhaps forestalling long-term placement in a residential aged care facility. Despite numerous anecdotal reports in support of respite care, its uptake by carers of people with dementia remains relatively low. The aim of this paper was to examine the factors that constitute the use of respite by carers of people with dementia by reviewing quantitative and qualitative research predominantly from the years 1990 to 2012. Seventysix international studies of different types of respite care were included for this review and their methods were critically appraised. The key topics identified were in relation to information access, the barriers to carers realising need for and seeking respite, satisfaction with respite services including the outcomes for carers and people with dementia, the characteristics of an effective respite service and the role of health workers in providing appropriate respite care. Finally, limitations with considering the literature as a whole were highlighted and recommendations made for future research.

Respite & Recoery at Al Wakra

International Design Competition for Qatar Psychiatric Hospital. The scheme for the Al Wakra Respite and Recovery Centre delivers on an all-in attitude toward evidence-based design. It sets new benchmarks in so many ways: the way it allows excellent separation between patient cohorts without unnecessary or visible restrictions; the way it allows sharing of most of the clinical kit and spaces; the way services reticulation and facilities management takes place without compromising security and safety; the ways It abandons the institutional axioms that are still so ubiquitous elsewhere, so it can appear as the friendly, welcoming and wholesome; the way it allows incredible flexibility to allow changes or flexion on the fly; the way it has such ‘good bones’ for more structural changes as the future unfolds. But most importantly, the scheme will be exemplary in the way the building itself plays a role in promoting the recovery and mental well-being of its residents. Like no other, the Centre will rise to the challenges of supporting and inspiring an exemplary mental health service and promote the well-being of the patients. The 160 bed scheme allows for 43,000m2 of landscape, packed with wholesome things to do and experience. The Aspire zone even has stables and a falconry, both to celebrate the love that Qatari people have for horses and birds.

Distress in children with learning disabilities at a respite unit: perspective on their experiences

Numerous studies have investigated the benefits of respite to families with a disabled child. Far fewer have examined the effects on the child and none have systematically compared information about this from different sources. Reports of behavioural reactions and views on distress were gathered from parents, teachers and respite staff. Children were also asked for their views. Over half the children (54%) were reported to show medium or strong negative reactions lasting for 1 or more days by a parent or teacher. Reported reactions varied widely between home and school and no concordance was found between parents, teachers and respite staff groups regarding distress. Some children's views differed from those of their parent or teacher. The findings highlight the extent of differences in perspectives and suggest the need for greater awareness of the possible distress to children attending respite. This is discussed in relation to factors such as the potential conflict of interests between parents and children, communication and behavioural difficulties, and the context in which the child is observed.

The impact of residential respite care on the behavior of older people

Background: The aim of this study was to examine the impact of residential respite care on disruptive behavior displayed by older people, particularly those with dementia. Methods: A quasi-experimental, repeated-measures, single-group design was used. The participants were a consecutive series of 100 older people with a mean age of 81.8 years (range 66-96 years) who had been booked for a respite admission to one of several residential aged care facilities in a provincial Australian city. A diagnosis of dementia was reported for 29% of the sample. Disruptive behaviors were rated before and after the period of respite by home caregivers (N = 100) and during the period of respite by nurses (N= 25) using the Dementia Behavior Disturbance Scale (DBDS). Results: Age, male gender and the presence of dementia were all significantly related to the frequency of reported disruptive behaviors. Residential respite care was associated with a significant reduction in the frequency of reported disruptive behaviors in older people (Wald chi(2) = 28.28, P < 0.0001). However, this improvement in behavior did not persist into the post-respite period. The deteriorating behavioral trajectory that was evident prior to respite care continued following the period of respite care. Conclusions: Residential respite care was associated with a temporary diminution in the frequency of reported disruptive behaviors in older people. This finding should be reassuring both for family carets considering placing a relative in residential respite care and for health workers considering whether to recommend such a course of action.

Contrasting views and experiences of health professionals on the management of comorbid substance misuse and mental disorders

Objectives: To determine opinions and experiences of health professionals concerning the management of people with comorbid substance misuse and mental health disorders. Method: We conducted a survey of staff from mental health services and alcohol and drug services across Queensland. Survey items on problems and potential solutions had been generated by focus groups. Results: We analysed responses from 112 staff of alcohol and drug services and 380 mental health staff, representing a return of 79% and 42% respectively of the distributed surveys. One or more issues presented a substantial clinical management problem for 98% of respondents. Needs for increased facilities or services for dual disorder clients figured prominently. These included accommodation or respite care, work and rehabilitation programs, and support groups and resource materials for families. Needs for adolescent dual diagnosis services and after-hours alcohol and drug consultations were also reported. Each of these issues raised substantial problems for over 70% of staff. Another set of problems involved coordination of client care across mental health and alcohol and drug services, including disputes over duty of care. Difficulties with intersectoral liaison were more pronounced for alcohol and drug staff than for mental health. A majority of survey respondents identified 13 solutions as practical. These included routine screening for dual diagnosis at intake, and a range of proposals for closer intersectoral communication such as exchanging client information, developing shared treatment plans, conducting joint case conferences and offering consultation facilities. Conclusions: A wide range of problems for the management of comorbid disorders were identified. While solution of some problems will require resource allocation, many may be addressed by closer liaison between existing services.

Weaving yarns : the lived experience of Indigenous Australians with adult-onset disability in Brisbane

Indigenous Australians have lower levels of health than mainstream Australians and (as far as statistics are able to indicate) higher levels of disability, yet there is little information on Indigenous social and cultural constructions of disability or the Indigenous experience of disability. This research seeks to address these gaps by using an ethnographic approach, couched within a critical medical anthropology (CMA) framework and using the “three bodies” approach, to study the lived experience of urban Indigenous people with an adult-onset disability. The research approach takes account of the debate about the legitimacy of research into Indigenous Australians, Foucault‟s governmentality, and the arguments for different models of disability. The possibility of a cultural model of disability is raised. After a series of initial interviews with contacts who were primarily service providers, more detailed ethnographic research was conducted with three Indigenous women in their homes and with four groups of Indigenous women and men at an Indigenous respite centre. The research involved multiple visits over a period extending more than two years, and the establishment of relationships with all participants. An iterative inductive approach utilising constant comparison (i.e. a form of grounded theory) was adopted, enabling the generation and testing of working hypotheses. The findings point to the lack of an Indigenous construct of disability, related to the holistic construction of health among Indigenous Australians. Shame emerges as a factor which affects the way that Indigenous Australians respond to disability, and which operates in apparent contradiction to expectations of community support. Aspects of shame relate to governmentality, suggesting that self-disciplinary mechanisms have been taken up and support the more obvious exertion of government power. A key finding is the strength of Indigenous identity above and beyond other forms of identification, e.g. as a person with a disability, expressed in forms of resistance by individuals and service providers to the categories and procedures of the mainstream. The implications of a holistic construction of health are discussed in relation to the use of CMA, the interpretation of the “three bodies”, governmentality and resistance. The explanatory value of the concept of sympatricity is discussed, as is the potential value of a cultural model of disability which takes into account the cultural politics of a defiant Indigenous identity.

Evaluation of the Airdrie Sheriff Youth Court Pilot

A pilot Youth Court was introduced at Airdrie Sheriff Court in June 2004. Its objectives were to: • reduce the frequency and seriousness of re-offending by 16 and 17 year old offenders, particularly persistent offenders (and some 15 year olds who are referred to the court); • promote the social inclusion, citizenship and personal responsibility of these young offenders while maximising their potential; • establish fast track procedures for those young persons appearing before the Youth Court; • enhance community safety, by reducing the harm caused to individual victims of crime and providing respite to those communities which are experiencing high levels of crime; and • test the viability and usefulness of a Youth Court using existing legislation and to demonstrate whether legislative and practical improvements might be appropriate. An evaluation of the pilot commissioned by the Scottish Executive found that it appeared in many respects to be working well. It was a tightly run court that dealt with a heavy volume of business. With its fast track procedures and additional resources it was regarded as a model to be aspired to in all summary court business. Whether a dedicated Youth Court was required or whether procedural improvements would have been possible in the absence of dedicated resources and personnel was, however, more difficult to assess. Two issues in particular required further attention. First, consideration needed to be given to whether the Youth Court should be more explicitly youth focused and what this might entail. Second, greater clarity was required regarding for whom the Youth Court was intended to avoid the risk of net-widening and its consequences for young people.

Evaluation of the Hamilton Youth Court Pilot 2003-2005

Pilot Youth Courts were introduced at Hamilton Sheriff Court in June 2003 and at Airdrie Sheriff Court in June 2004. Although introduced as one of a number of measures aimed at responding more effectively to youth crime (including young people dealt with through the Children’s Hearings System), the Youth Courts were intended for young people who would otherwise have been dealt with in the adult Sheriff Summary Court. The objectives of the pilot Youth Courts were to: • reduce the frequency and seriousness of re-offending by 16 and 17 year old offenders, particularly persistent offenders (and some 15 year olds who are referred to the court); • promote the social inclusion, citizenship and personal responsibility of these young offenders while maximising their potential; • establish fast track procedures for those young persons appearing before the Youth Court; • enhance community safety, by reducing the harm caused to individual victims of crime and providing respite to those communities which are experiencing high levels of crime; and • test the viability and usefulness of a Youth Court using existing legislation and to demonstrate whether legislative and practical improvements might be appropriate. Evaluation of the Hamilton and Airdrie Sheriff Youth Court pilots suggested that they had been successful in meeting the objectives set for them by the Youth Court Feasibility Group. Both were tightly run courts that dealt with a heavy volume of business. The particular strengths of the Youth Court model over previous arrangements included the fast-tracking of young people to and through the court, the reduction in trials, the availability of a wider range of resources and services for young people and ongoing judicial review. The successful operation of the pilot Youth Courts was dependent upon effective teamwork among the relevant agencies and professionals concerned. Good information sharing, liaison and communication appeared to exist across agencies and the procedures that were in place to facilitate the sharing of information seemed to be working well. This was also facilitated by the presence of dedicated staff within agencies, resulting in clear channels of communication, and in the opportunity provided by the multi-agency Implementation Groups to identify and address operational issues on an ongoing basis. However, whether Youth Courts are required in Scotland or whether procedural improvement were possible in the absence of dedicated resources and personnel was more difficult to assess. Two issues in particular required further attention. First, consideration needed to be given to whether the Youth Courts should be more explicitly youth focused and what this might entail. Second, greater clarity was required regarding for whom the Youth Courts were intended. This suggested the need for further discussion of Youth Court targeting and its potential consequences among the various agencies concerned.

Designing environments for recovery

There’s growing evidence that psychosis is linked to the physical environments that we live in. Good environments are the ones that allow people to step back, relax and feel secure, while engaging in interesting and meaningful activity. Bad environments don’t allow respite: they keep people on their toes and somehow magnify meaninglessness and hollow rules and unreasonable demands. They may also be bleak and even unfair or outright scary. But don’t expect everyone to notice the bad environments: recent studies demonstrate that patients with psychosis are far more likely to notice even subtle negative features in the environment than people without symptoms. The same patients are also less likely to notice the good things an environment has to offer – but that doesn’t mean they shouldn’t be provided.

The links between public tendencies and the urban design framework of Brisbane’s public squares: Mapping urban design frameworks present in Brisbane public squares and the correlating activities of the Australian public

This research seeks to demonstrate the ways in which urban design factors, individually and in various well-considered arrangements, stimulate and encourage social activities in Brisbane’s public squares through the mapping and analysis of user behaviour. No design factors contribute to public space in isolation, so the combinations of different design factors, contextual and social impacts as well as local climate are considered to be highly influential to the way in which Brisbane’s public engages with public space. It is this local distinctiveness that this research seeks to ascertain. The research firstly pinpoints and consolidates the design factors identified and recommended in existing literature and then maps the identified factors as they are observed at case study sites in Brisbane. This is then set against observational mappings of the site’s corresponding user activities and engagement. These mappings identify a number of patterns of behaviour; pertinently that “activated” areas of social gathering actively draw people in, and the busier a space is, both the frequency and duration of people lingering in the space increases. The study finds that simply providing respite from the urban environment (and/or weather conditions) does not adequately encourage social interaction and that people friendly design factors can instigate social activities which, if coexisting in a public space, can themselves draw in further users of the space. One of the primary conclusions drawn from these observations is that members of the public in Brisbane are both actively and passively social and often seek out locations where “people-watching” and being around other members of the public (both categorised as passive social activities) are facilitated and encouraged. Spaces that provide respite from the urban environment but that do not sufficiently accommodate social connections and activities are less favourable and are often left abandoned despite their comparable tranquillity and available space.

Assistance arrangements and use of services among persons with multiple sclerosis and their caregivers

A large population-based survey of persons with multiple sclerosis (MS) and their caregivers was conducted in Ontario using self-completed mailed questionnaires. The objectives included describing assistance arrangements, needs, and use of and satisfaction with services, and comparing perceptions of persons with MS and their caregivers. Response rates were 83% and 72% for those with MS and caregivers, respectively. Based on 697 respondents with MS whose mean age is 48 years, 70% are female, and 75% are married. While 24% experience no mobility restrictions, the majority require some type of aid or a wheelchair for getting around. Among 345 caregivers, who have been providing care for 9 years on average, the majority are spouses. Caregivers report providing more frequent care than do persons with MS report receiving it, particularly for the following activities of daily living: eating, meal preparation, and help with personal finances. Caregivers also report assistance of longer duration per day than do care recipients with MS. Frequency and duration of assistance are positively associated with increased MS symptom severity and reduced mobility. Generally there is no rural-urban disparity in service provision, utilization or satisfaction, and although there is a wide range of service utilization, satisfaction is consistently high. Respite care is rarely used by caregivers. Use of several services is positively associated with increased severity of MS symptoms and reduced mobility. Assistance arrangements and use of services, each from the point of view of persons with MS and their caregivers, must be taken into account in efforts to prolong home care and to postpone early institutionalization of persons with MS.

Pitfalls in the Treatment of Persons with Dementia

Pitfalls in the treatment of persons with dementia Persons with dementia require high-quality health care, rehabilitation and sufficient social services to support their autonomy and to postpone permanent institutionalization. This study sought to investigate possible pitfalls in the care of patients with dementia: hip fracture rehabilitation, use of inappropriate or antipsychotic medication, social and medicolegal services offered to dementia caregiving families. Three different Finnish samples were used from years 1999-2005, mean age 78 to 86 years. After hip fracture operation, the weight-bearing restriction especially in group of patients with dementia, was associated with a longer rehabilitation period (73.5 days vs. 45.5 days, p=0.03) and the inability to learn to walk after six weeks (p<0.001). Almost half (44%) of the pre-surgery home-dwellers with dementia in our sample required permanent hospitalization after hip fracture. Potentially inappropriate medication was used among 36.2% of nursing home and hospital patients. The most common PIDs in Finland were temazepam over 15 mg/day, oxybutynin, and dipyridamole. However, PID use failed to predict mortality or the use of health services. Nearly half (48.4%) of the nursing home and hospital patients with dementia used antipsychotic medication. The two-year mortality did not differ among the users of conventional or atypical antipsychotics or the non-users (45.3% vs.32.1% vs.49.6%, p=0.195). The mean number of hospital admissions was highest among non-users (p=0.029). A high number of medications (HR 1.12, p<0.001) and the use of physical restraints (HR 1.72, p=0.034) predicted higher mortality at two years, while the use of atypical antipsychotics (HR 0.49, p=0.047) showed a protective effect, if any. The services most often offered to caregiving families of persons with Alzheimer s disease (AD) included financial support from the community (36%), technical devices (33%), physiotherapy (32%), and respite care in nursing homes (31%). Those services most often needed included physiotherapy for the spouse with dementia (56%), financial support (50%), house cleaning (41%), and home respite (40%). Only a third of the caregivers were satisfied with these services, and 69% felt unable to influence the range of services offered. The use of legal guardians was quite rare (only 4.3%), while the use of financial powers of attorney was 37.8%. Almost half (47.9%) of the couples expressed an unmet need for discussion with their doctor about medico-legal issues, while only 9.9% stated that their doctor had informed them of such matters. Although we already have many practical methods to develop the medical and social care of persons with AD, these patients and their families require better planning and tailoring of such services. In this way, society could offer these elderly persons better quality of life while economizing on its financial resources. This study was supported by Social Insurance Institution of Finland and part of it made in cooperation with the The Central Union of the Welfare for the Aged, Finland.