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The following resources examine services and interventions intended to provide respite or a break for the carer and/or the person cared for.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).

Short break and emergency respite care: what options for young people with life-limiting conditions?

Background: Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.

Objective: To explore alternative short break and emergency respite care options to children's hospice care.

Methods: A two-phase evaluation with young people, families and professionals.

Phase 1: qualitative semi-structured interviews and focus groups (n=53).

Phase 2: mixed-method survey (n=82), qualitative findings only.

Results: There were few, or no, appropriate short break and emergency respite care alternatives when children's hospice care was not available that can meet the need of young people with life-limiting conditions, creating anxiety for children's hospice users and those leaving the service as a result of reaching transition age or through no longer meeting the children's hospice eligibility criteria.

Conclusion: Access to appropriate short break and emergency respite care is required to prevent lifelong negative consequences for young people with life-limiting conditions, their family and society. Research is undoubtedly required to explore the impact and outcomes of children's hospice discharge for young people and their family. Particular attention should be paid to the lack of services for an increasing population making the transition from children's hospices. 

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Measuring the Benefits of Respite Care use by Children with Disabilities and Their Families

Purpose: The benefits of respite care in reducing the burden of caregivers of children with disabilities are well known; however, few studies have effectively quantified such benefits. The aim of the present study was to develop and validate a measure for evaluating the benefit of respite care provided to family caregivers of children with disabilities.

Design and Methods: This was a cross-sectional study. We distributed a survey questionnaire to 465 family caregivers between March and April 2017. Participants were asked to respond to items regarding benefits of respite care for themselves and their children.

Results: Data in relation to four domains (Child Development, Sense of Peace and Life Fulfillment among Caregivers, Mental Health Support for the Caregiver, and Expansion of Perspectives and Future Vision) were extracted to assess the benefits of using respite care. The full-scale Cronbach's α coefficient was 0.89 and ranged between 0.73 and 0.88 for each individual domain.

Conclusions: The newly developed measure for assessing the benefits of respite care for family caregivers of children with disabilities was highly reliable and valid.; Practice Implications: This objective tool would allow healthcare practitioners to review the quality of respite care they provide and subsequently help them identify ways to improve. 

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Caring for the Caregiver: Supporting Families of Youth With Special Health Care Needs

Caregivers of youth with special health care needs (YSHCN) are a critical part of the health care team. It is important for pediatric providers to be cognizant of the burden and strain caregiving can create. This article will discuss the health, psychological, social, and financial effects of caregiving, as well as strategies to screen for caregiver strain among families of YSHCN. Caregivers of YSHCN, for example, are more likely to report poor health status and demonstrate higher rates of depression and anxiety. Numerous validated screens for caregiver strain have been developed to address the multi-faceted effects of caregiving. Finally, we will discuss strategies to alleviate caregiver strain among this vulnerable population. We will describe services pediatric providers can encourage caregivers to utilize, including financial support through Supplemental Security Income (SSI), benefits available through the Family Medical Leave Act (FMLA), and options for respite care. Addressing caregiver strain is an important aspect of maintaining a family centered approach to the care of YSHCN. 

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Children with medical complexities: Addressing the gaps in respite care during transition from paediatrics to adult health care in Ontario

Respite care is one integral component of the transition process from paediatric to adult health care, and is of particular importance to individuals with medical complexities. Numerous gaps that exist within the current system limit a child and family's ability to access quality respite care during a time when it is often most needed. Identifying and addressing these gaps in a systematic and collaborative way presents an opportunity to improve the quality of life for this vulnerable, ever growing population and their families.

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Respite needs of families receiving palliative care

Aim: The care of a child with a life-limiting condition proves an emotional, physical and financial strain on the family that provides care for their child. Respite care is one way which allows carers to receive some relief and support in the context of this burden of care. The provision of and the requirements for respite in this context is poorly understood. This survey aims to describe the types of respite care families receive, the respite that they would ideally receive and the barriers that prevent this.

Methods: A cohort of 34 families cared for by the Paediatric Palliative Care Service in Queensland were approached to participate in a 20-question survey about their current respite preferences for future respite, with 20 surveys returned.

Results: Three of the families (15%) reported receiving no respite in the previous 12 months. Families who received respite received a combination of formal respite (a structured care provider) and informal respite (family or friends). Ten families (50%) reported that they would want the time of respite changed. Barriers to receiving adequate respite included complexity of care of the child, financial barriers and lack of a respite provider. 

Conclusions: There is disparate provision of respite care with the main perceived barrier to attaining 'ideal respite' being the lack of a provider able to meet the complex care needs of their child. The provision of respite across diversity in geography; medical condition; social and cultural needs remains a challenge. 

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Trends in the provision of residential educational placements available for young people with learning disabilities/autism in England

Purpose: Little is known about the characteristics of residential educational settings for young people with intellectual or developmental disabilities (IDD) in England. Previous research has focussed on the characteristics and experiences of the young people attending such settings rather than the setting itself; therefore, an overview of national provision is needed. The paper aims to discuss these issues.

Design/methodology/approach: As part of a larger project, data were collected for all residential schools and colleges in England. Data relate to settings offering residential provision for at least 4 nights per week for 30 weeks per year, either at the school/college itself, or in an associated residential home. Due to the remit of the main project, settings offering placements only to young people aged under 16 were excluded. Data were collected from a range of sources, including school/college websites, Ofsted and Department for Education resources, and liaison directly with the setting.

Findings: In total, 342 residential educational settings were identified with 57 of these offering post-16 provisions only. A range of data is presented about these settings, including location, placement numbers and types available, age range catered for, special educational needs categories registered for, governance arrangements (e.g. LA maintained, privately owned, and charitable organisation), and Ofsted educational ratings.

Originality/value: These data provide a national overview of residential educational settings for young people with IDD. This enables a clearer picture of the location and type of provision offered and allows comparisons both within and between areas.

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Respite care services for children with special healthcare needs: Parental perceptions

Purpose: Parents of children with special healthcare needs may become overwhelmed with the ongoing caregiving needs of their children. Caring for a child with special healthcare needs is often challenging, requiring specialized training in many cases. As a result, parents can struggle to find qualified caregivers capable of providing them a break from the 24/7 care of their child. Respite care programs are designed to provide caregivers with a much‐needed temporary break. The purpose of this study was to examine parental perceptions of utilizing a respite care program.

Design and Methods: Twenty‐two parents who had a child with special healthcare needs who attended a Midwestern respite care program completed a Participant Characteristic Form addressing their experiences caring for their child with special healthcare needs and using respite care services. Parents participated in a focus group (N = 4) to explore their perceptions and experiences of respite care participation. Multistage thematic analysis and descriptive statistics were used to analyze the data.

Results: Themes emerging from the data included: Constant care demands; It is just so stressful; Respite is a gift, we get a break; Respite program “fit”; and Respite is their special time too. Parents emphasized the benefits of respite care for their marital relationship, as well as the benefits to the children with special healthcare needs and their siblings. Parents also described the importance of tailoring respite care to the unique needs of their family.

Practice Implications: Nurses and other healthcare professionals play a critical role in addressing the unmet respite care needs of parents of children with special healthcare needs by identifying unmet needs and making appropriate referrals to services that will meet the unique needs of the family. Healthcare professionals can also volunteer with existing programs to help expand access to respite care services and increase the availability of adequately trained respite care providers whom parents can trust to provide for the complex healthcare needs of their children.

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Respite Care and Stress Among Caregivers of Children With Autism Spectrum Disorder: An Integrative Review

While parenting, in general, can be stressful, mothers of children with autism spectrum disorder (ASD) experience chronic stress comparable to combat soldiers. Research suggests that respite care may potentially reduce stress among caregivers. However, greater understanding of this relationship is needed. The purpose of this integrative review is to examine the relationship between respite care and stress among caregivers of children with ASD.; Sample and Eligibility: A final sample of 11 primary research reports were located using several databases. Articles were included that were: related to the focus of the review, written in English, and published within the last 10 years.; Results and Conclusion: While most studies found that respite care was associated with lower stress, several found that respite care was associated with higher stress. One study found no association. A model is presented that contributes to a new understanding of this relationship. Overall, the results of this integrative review provide some evidence that respite care use may be associated with a decrease in stress among caregivers of children with ASD. However, due to the lack of consistency and quality across the studies, these findings must be interpreted with caution.; Implications: Healthcare providers must recognize the importance of tailoring respite care services to the unique family needs. Additionally, policy changes and innovative ideas are needed to help improve the quality of respite care and help expand access. Finally, additional research is necessary to better understand the relationship between respite care and stress among caregivers of children with ASD. 

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How nurses support family caregivers in the complex context of end-of-life home care: a qualitative study

Background: Family caregivers are crucial in providing end-of-life care at home. Without their care, it would be difficult for many patients to die at home. In addition to providing care, family caregivers also need support for themselves. Nurses could play an important role in supporting family caregivers, but little is known about if and how they do so. The aim of this study is to explore how nurses currently approach and support family caregivers in end-of-life home care and which factors influence their support of family caregivers. Methods: Data were collected using semi-structured interviews with 14 nurses from nine home care organisations in the Netherlands, in 2018. Interviews were audio-taped, transcribed verbatim and analysed using a thematic analysis approach. Results: We identified two underlying nursing perspectives on supporting family caregivers: an instrumental perspective (seeing family caregivers mostly as collaborative partners in care) and a relational perspective (seeing family caregivers as both providing and needing support). All the interviewed nurses stated that they pay attention to family caregivers’ needs. The activities mentioned most often were: identification of support needs, practical education, support in decision-making about the patient’s treatment, emotional support, and organising respite care, such as night care, to relieve the family caregiver. The provision of support is usually based on intuition and experience, rather than on a systematic approach. Besides, nurses reported different factors at the individual, organisational and societal levels that influenced their support of family caregivers, such as their knowledge and experience, the way in which care is organised, and laws and regulations. Conclusions: Nurses tend to address family caregivers’ needs, but such care was affected by various factors at different levels. There is a risk that nursing support does not meet family caregivers’ needs. A more reflective approach is needed and evidence-based needs assessment tools may help nurses to systematically assess family caregivers’ needs and to provide appropriate support.

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Respite service for informal caregivers: evaluation of simulation-training based education program

Background: Currently, the care for elderly people is provided mainly on an informal basis by relatives. This is often associated with psychological and physical stress. Caregiving relatives usually take over the role unprepared and they lack both knowledge and skills to fulfil the tasks. Therefore, arrangements must be made to provide respite for family carers. Simulation training is a validated experiential learning tool traditionally incorporated in health professional education but has not been commonly used in the hands-on training of informal caregivers. Objectives: This study tried to measure whether participation in a special simulation training affects the trust in one's own ability to care, the quality of life and the stress perception of caring relatives. Methods: 98 caring relatives participated in the prospective, controlled (non-randomized) intervention study. The intervention involved an eight-month educational program in a simulation-training center in Graz (Austria). The program is either Manikin-based or Standardized Patient simulation trainings and take place in a show apartment. The impact on the caregiving competence, the quality of life and the burden-of-care was measured at the beginning (T1), after four months (T2) and after eight months (T3) using validated questionnaires (Self-Efficacy Scale, EQ-5D-5L and HPS). Results: The results show a significant influence of the education program on self-efficacy (p 0.0018) and the increase in knowledge (p 0.04) of the participants. With regard to the subjective quality of life and the perception of stress no significant effects were shown. Conclusions: The results show that the participation of family carers at the education program has different influence on the defined parameters. Not only the stable quality of life of the intervention group but also the short-term significant reduction in subjective stress perception directly after the training can be emphasized as positive indicators for the program. Key messages The results show that informal caregivers benefit from simulation training, since they can apply at home what they have learned during the training. Simulation training for informal caregivers significant influence their self-efficacy and the increase in knowledge.

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Taking a Break: Daily Respite Effects of Adult Day Services as Objective and Subjective Time Away From Caregiving

Background and Objectives: Adult day services (ADS) can provide emotional and physical relief for caregivers of persons with dementia. While prior studies conceptualized ADS use at the aggregate level as a dichotomous construct, little is known about objective and subjective respite as distinct constructs. This study investigated how objective and subjective breaks from caregiving were associated with caregivers' daily emotional well-being. Research Design and Methods: Family caregivers (N = 173) whose relatives were using ADS at least twice a week participated in daily interviews over 8 consecutive days (day N = 1,359). Participants provided information on daily respite hours and daily affect. They also reported perceived frequency of breaks from caregiving responsibilities and primary and secondary caregiving stressors (i.e., overload and work conflict). Multilevel models were used to examine the research questions. Results: On average, caregivers reported 7.12 respite hours on ADS days and 1.74 respite hours on non-ADS days. Having more objective respite was associated with higher positive affect, whereas more subjective respite was associated with lower negative affect, after controlling for ADS use and other covariates. Further, caregivers with greater work conflict experienced more benefits to their positive affect as a result of objective respite. Discussion and Implications: Objective and subjective respite are unique aspects of caregiving that may have varying impact on caregivers. Respite may be especially beneficial for caregivers experiencing conflict between work and caregiving.

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Determinants of the need for respite according to the characteristics of informal carers of elderly people at home: results from the 2015 French national survey

Background: The demographic and social changes associated with population aging and the increasing incidence of chronic diseases underscore the importance of the role of informal carers. The number of informal carers is increasing and negative consequences associated with providing care, such as burnout, are known. However the influence of socioeconomic and psychological factors on the need for respite have not been well characterized to date. Informal care represents an essential component of health care systems and long-term care. Objectives: The purpose of this study was to shed light on how the characteristics of informal carers affect the need for respite. Methods: We used data from a nationally representative survey, Capacités Aides et Resources des Seniors (CARE - ménage), collected in 2015 by the National Institute for Statistics and Economic Studies (INSEE) and the Directorate for Research, Studies, Assessment and Statistics (DREES). The determinants of the need for respite among the characteristics of informal caregivers were explored using a probit model. To handle missing data, sensitivity analyses were performed using multiple imputations. Results: Our study included N = 4033 dyads of informal carers and care recipients. The mean age was 61 for carers. The majority of carers were female, married, the child of the care recipient. Almost 27% reported a need for respite. A worse health status, feeling of loneliness, having a lack of time for oneself and needing to provide more than 30 h of care per month very significantly increased the need for respite irrespective of whether or not the carer lived with the care recipient (p < 0.01). Providing care to other persons was likely to induce a greater need for respite (p < 0.01). Cohabitation of the informal carer and the care recipient was likely to increase the need for respite (p < 0.05). Conversely, however, being closely acquainted with the care recipient showed a reduced need for respite in comparison with that of carers who are married to their care recipient (p < 0.05). Conclusions: These findings provide useful information for policymakers, physicians and other health professionals for reducing carers’ risk of exhaustion and burnout and for referring carers to the relevant service, e.g. psychological intervention, respite care support, training support and education support. 

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Developing an mHealth Application to Coordinate Nurse-Provided Respite Care Services for Families Coping With Palliative-Stage Cancer: Protocol for a User-Centered Design Study

Background: Patients living with palliative-stage cancer frequently require intensive care from their family caregivers. Without adequate community support services, patients are at risk of receiving inadequate care, and family caregivers are at risk for depression and poor health. For such families, in-home respite care can be invaluable, particularly when the services are flexible and staffed by trusted care providers, such as nurses. Other industries are using mobile apps to make services more flexible. However, few apps have been developed to coordinate nurse-provided respite care services, and to our knowledge, none have been designed in conjunction with families affected by cancer. Objective: The aim of this study is to develop a mobile health (mHealth) app prototype for coordinating flexible and trusted in-home respite care services provided by nurses to families coping with palliative-stage cancer in Québec, Canada. Methods: This user-centered design research comprises the core component of the iRespite Services iRépit research program. For this study, we are recruiting 20 nurses, 15 adults with palliative-stage cancer, and 20 of their family caregivers, from two palliative oncology hospital departments and one palliative home-care community partner. Overseen by an Expert Council, remote data collection will occur over three research phases guided by the iterative Information Systems Research Framework: Phase 1, brainstorming potential app solutions to challenging respite care scenarios, for better supporting the respite needs of both family caregivers and care recipients; Phase 2, evaluating low-fidelity proofs of concept for potential app designs; and Phase 3, usability testing of a high-fidelity interactive proof of concept that will then be programmed into an app prototype. Qualitative and quantitative data will be descriptively analyzed within each phase and triangulated to refine the app features. Results: We anticipate that preliminary results will be available by Spring 2022. Conclusions: An app prototype will be developed that has sufficient complimentary evidence to support future pilot testing in the community. Such an app could improve the delivery of community respite care services provided to families with palliative-stage cancer in Québec, supporting death at home, which is where most patients and their families wish to be. International Registered Report Identifier (IRRID): PRR1-10.2196/34652

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Who are the beneficiaries and what are the reasons for non-utilization of care respite and support services? A cross-sectional study on family caregivers

Background: Family caregivers assume substantial caregiving responsibilities for persons with chronic conditions, such as individuals with spinal cord injury, which leads to negative impacts on their lives. Respite care and other services are provided as a temporary relief and support for them. Design of appropriate respite care programs depends on identification of beneficiary subgroups for the different types of service. This study aimed to quantify the uptake of different respite and support services for family caregivers, the reasons for non-use, and to explore the respective predictors. Methods: A cross-sectional survey of family caregivers of persons with spinal cord injury was conducted nationwide in Switzerland. The use of 11 different respite and support services during the previous 12 months was investigated, along with caregivers’ reasons for not using any respite. Classification trees were used to characterize the beneficiaries and reasons for not using respite. Results: About a third of family caregivers used at least one type of respite or support service during the previous 12 months. Utilization of respite care was greater among those who employed professional home care (57% vs 24% of those without professional home care). Marked cantonal differences were also observed in utilization of respite care. The primary reason for not using respite services was “no demand” (80% of non-users of respite services), mainly among caregivers who were less emotionally affected by their caregiving tasks. Conclusions: Utilization of respite and support services depends more on place of residence and use of home care services than on functional status of the care recipient. Accordingly, programs should be tailored to the cultural context of their potential users. This is best achieved through coordination with local health care professionals who can identify needs, provide information, initiate referrals, and integrate the care into a larger support plan.

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Supporting family carers of people with dementia: A discrete choice experiment of public preferences

Background: Community-based care for people with dementia is mainly provided by family carers, many of whom experience decreased mental, physical and financial well-being due to their caring role. Many countries are now implementing ageing-in-place policies that have increased pressure on family carers as care-work is redistributed from residential to community-based settings. Family caring responsibilities for people with dementia are made even more complicated by the economic, social and cultural expectations that underpin existing provision. Support for family carers is, therefore, an important policy topic across many countries. Objectives: The focus of this paper is on the propensity of citizens to support enhanced care for family carers in Ireland, as demonstrated by their willingness-to-pay additional taxation to fund different combinations of carer support measures, developed through careful and sustained dialogue with multiple stakeholders, especially family carers themselves. Methods: We carried out a discrete choice experiment (DCE) with 509 members of the general public in Ireland between January and February 2021. Results: Using mixed logit models, our findings show that citizens value four key attributes: regular caring breaks for family carers (day-care and long-break respite); financial compensation (carer's allowance); and emotional support (carer peer support groups). We also estimated the welfare impact of moving from current provision to enhanced support packages for family carers of people with dementia. The welfare gains accumulate to €1035.80 for the most complete levels of provision across the four support attributes. Conclusions: Overall, respondents in this paper showed empathy and understanding towards family carers of people with dementia through their willingness to contribute to funding additional services and supports. 

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Supporting adult carers

This quality standard covers the provision of support for adults aged 18 or over who provide unpaid care for 1 or more people aged 16 or over with health and social care needs. It describes high-quality care in priority areas for improvement.

It does not cover people who provide paid care or do so as voluntary work. 

This quality standard should be read together with the Care and support statutory guidance under the Care Act 2014 and the Children and Families Act 2014.

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Strengths and Struggles for Families Involved in Hospice Care During the COVID-19 Pandemic

Background: The COVID-19 pandemic presented unique health and social challenges for hospice patients, their families, and care providers. Methods: This qualitative study explored the impact of the pandemic on this population through the experiences and perceptions of social workers in hospice care. A survey was distributed through national and local listservs to social work practitioners throughout the United States between May 15 and June 15, 2020. Objectives: The study was designed to learn the following: (1) Concerns patients experienced as a result of the pandemic, (2) strengths/resilience factors for patients during the COVID-19 pandemic, and (3) the personal and professional impact of the pandemic on social workers. Results: Themes uncovered in hospice care included isolation, barriers to communication, disruption of systems, issues related to grieving, family and community support, adaptation, and perspective. Conclusions: The authors provide recommendations for social work practice related to virtual communication, emergency planning, and evidence-based intervention for Persistent Complex Bereavement Disorder. Recommendations for policy include uniform essential worker status for social workers, telehealth reimbursement and expanded caregiver respite benefits.

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Staff and family views of alternative respite services for adults with intellectual disabilities – aims, outcomes and experiences

Background: Respite care has traditionally been conceptualised as a short residential break which allows families a break from caring responsibilities. In recent years, alternative respite services have been developed which promote greater social integration and normalisation for people with intellectual and other disabilities. Specific aim: The present study sought to explore the views of service managers and families on the definitions, aims, outcomes and general experiences of these programmes among a sample of adults with intellectual disabilities (ID) using a range of alternative respite services. Method: Participants were managers of respite services for people with ID (n = 6) and family members (predominantly parents, n = 32) of adults receiving respite services from these organisations. All participants were provided with appropriate information on the study and gave consent. Semi-structured interviews were used to explore participants' perspectives on alternative respite provision for adults with ID. Data were analysed using thematic analysis, with multiple analysts involved to allow for reflection on the interpretation of data. Findings Managers and families showed diversity in the conceptualisations of respite services, with themes highlighting the importance of the break for both people with ID and families, as well as a clear focus on the needs of and developmental outcomes for the person with ID. As such respite was viewed as both a model of service and an outcome for families and individuals with ID. These differing views appeared to have implications for views on who was the target beneficiary of respite. Discussion: The present study reflects alternative respite as a diverse experience for people with ID, their family members and the service providers supporting them. Nevertheless, views were generally positive. Further consideration of the nature of respite services beyond the traditional conceptualisation is warranted.

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Intention to use respite services among informal care-givers of frail older adults in China: the role of care needs change

Background: Population ageing in China calls for evidence-based solutions, especially in terms of fulfilling long-term care needs among frail older adults. Respite services are identified as effective resources for alleviating care-giver burden and promoting the wellbeing of both older adults and their family care-givers. However, respite care is often under-used in China. Objectives: This research aimed to examine factors associated with intention to use respite services among informal care-givers in Shanghai, mainland China. Methods: This study was part of the Longitudinal Study on Family Caregivers for Frail Older Adults in Shanghai. Pairs of older adults and their care-givers (N = 583) who successfully completed the 2013 and 2016 waves were included in the data analysis. Two logistic regression models were conducted, one with time-invariant and one with time-variant factors. Results: The model with time-variant factors had greater explanatory power than the original Andersen model with time-invariant factors influencing intention to use respite services among care-givers. Care-givers had higher odds of intending to use respite services if they had higher care-giving burden, were caring elderly people who experienced care-giver transitions, or were caring for elderly people with increased function of ambulation or decreased function of feeding. Conclusion: The findings imply that change in functional health was a significant determinant of intention to use respite care. Relevant policy and service implications will be discussed.

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Informal Care of Dependent Older People—Support Services and Funding Schemes

This chapter is dealing with aspects regarding informal care of dependent older people. Based on the analysis of the information obtained from the good practice and the informal care regulatory status in Romania, the authors proposed a set of support services and funding schemes that could be implemented in our country as follows: care leave and care allowance; palliative care leave; prolonged care leave; the employment of a personal assistant under the terms of the Framework Law no. 153/2017; allowance for long-term care; pension for severe dependence; flexible working arrangements for the informal caregiver; the possibility of early retirement up to 2 years before reaching the standard retirement age, without penalizing the amount of pension rights; respite care. The methodology was based on the good practices research, using qualitative and quantitative information from bouth primary and secondary sources of information.

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The fog of support: an inquiry into the provision of respite care and carers assessments for people affected by dementia

This report reviews the support available to informal carers of people with dementia, with specific attention being given to carers’ assessments (or “check ins”) and the provision of short breaks for carers. Evidence for this research was collected from a range of sources, including via desk-based research, a survey of directors of adult social care, a request to local authorities for data, interviews with senior leaders and commissioners in adult social care, a survey of professionals, a survey of carers, and workshops held in England and Wales with people living with dementia and carers. The findings show that there is a reported lack of available services that enable carers of people living with dementia to take a break from caring. Positive support is reported by some (such as that provided by local charities, and the use of community resources); however, both professionals and carers report difficulty in finding care provision which suits the needs of people living with dementia, and this in turn prevents carers from arranging breaks for themselves. The experience of carer assessments reported by carers is mixed; however, this research confirms findings in the wider literature that only a minority of carers have received an assessment of their needs. Furthermore, these assessments were not always experienced positively. The nature of providing short breaks for carers is challenging from a legislative perspective and at a practice level, particularly where support may be delivered to a person living with dementia but is intended primarily for the benefit of the person caring for them. Some evidence highlighted situations where this was the case, as well as situations where the person with dementia may have different wishes to the person caring for them in terms of replacement care.

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Estimating Service Demand for Intermediary Care at a Community Integrated Intermediary Care Center among Family Caregivers of Older Adults Residing in Chiang Mai, Northern Thailand

Background: Thailand’s population is currently the third most rapidly aging in the world, with an estimated 20 million ageing population by 2050. Sustainability of the family based long-term care model is challenged by the chronic burden on family caregivers and by smaller family sizes. We aimed to introduce a new service model, Community Integrated Intermediary Care (CIIC), TCTR20190412004, including free of charge intermediary care services at CIIC centers in the local community, to help older adults whose caregivers are temporarily unable to sustain care at home. Since Thai society upholds values of gratefulness, it is better to estimate willingness to use such an intermediary care service first, before introducing the service. Methods: A total of 867 pairs of senior citizens and their family caregivers were interviewed with structured-questionnaires in 2019. Descriptive analysis and binary logistic regression were applied to determine the predictors of family caregivers’ willingness to use the CIIC service, guided by Anderson’s model of health services use. Results: About 26.8% of elderly participants and 24.0% of family caregivers were willing to use an intermediary care service. The family caregiver determinants of predisposing factors (kinship: spouse caregivers, other relatives, maid or friends; job types: own business and private company staff), enabling factors (original community residents and monthly income ≤9000 baht), and need factors (caregiver burden total scores ≥24, taking leave for caregiving, and having diabetes), were found to be significantly associated with willingness to use the CIIC service. Conclusions: The baseline survey data noted that caregivers’ sociodemographic factors and burden determined their willingness to use the intermediary care service, although the dependency of care recipients was low in this study. This, nonetheless, indicated that there is need for a backup respite care to strengthen current family based long-term aging care in Thailand.

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Establishing priorities for psychosocial supports and services among family carers of people with dementia in Ireland

Introduction: Many family carers, particularly those caring for people with dementia, report significant personal and social challenges associated with caring. The aim of this article is to identify the range of challenges experienced by family carers of people with dementia and to ascertain their preferences for various supports and services that address those challenges. Method: Three modified nominal group technique (NGT) focus groups were conducted with family carers of people with dementia. The NGT groups were conducted with 17 participants in two stages, focusing separately on personal and social domains. Family carers identified challenges and individually ranked preferences for both existing and new services and supports. Data analysis consisted of qualitative content analysis and summative scoring of individual rankings. Findings: Family carers identified the following personal-level challenges: needing a break, social isolation and relationship changes. Family carers’ combined preferences for personal-level supports and services to overcome these challenges were day care, family care support groups, short-term respite, long-break respite and social activities. Social challenges referenced by family carers included finances, rights and entitlements and stigma and awareness. Preferences for supports and services to address these social challenges were non–means-tested carer’s allowance, legal recognition, carer’s support grant, monthly wage and community awareness programmes. Conclusion: Participants ranked day care and non–means-tested carer’s allowance as their top priorities under personal and social headings. Increased government investment in these two areas would not only help to maintain family carers’ contributions to community-based care in dementia but would also facilitate social inclusion, social connectedness and economic sustainability. 

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The fog of support: an inquiry into the provision of respite care and carers assessments for people affected by dementia

This report reviews the support available to informal carers of people with dementia, with specific attention being given to carers’ assessments (or “check ins”) and the provision of short breaks for carers. Evidence for this research was collected from a range of sources, including via desk-based research, a survey of directors of adult social care, a request to local authorities for data, interviews with senior leaders and commissioners in adult social care, a survey of professionals, a survey of carers, and workshops held in England and Wales with people living with dementia and carers. The findings show that there is a reported lack of available services that enable carers of people living with dementia to take a break from caring. Positive support is reported by some (such as that provided by local charities, and the use of community resources); however, both professionals and carers report difficulty in finding care provision which suits the needs of people living with dementia, and this in turn prevents carers from arranging breaks for themselves. The experience of carer assessments reported by carers is mixed; however, this research confirms findings in the wider literature that only a minority of carers have received an assessment of their needs. Furthermore, these assessments were not always experienced positively. The nature of providing short breaks for carers is challenging from a legislative perspective and at a practice level, particularly where support may be delivered to a person living with dementia but is intended primarily for the benefit of the person caring for them. Some evidence highlighted situations where this was the case, as well as situations where the person with dementia may have different wishes to the person caring for them in terms of replacement care. (Edited publisher abstract)

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Caregiver Burden and Associated Factors for the Respite Care Needs among the Family Caregivers of Community Dwelling Senior Citizens in Chiang Mai, Northern Thailand

Background: Families are the backbone of caregiving for older adults living in communities. This is a tradition common to Thailand and many low- and middle-income countries where formal long-term care services are not so available or accessible. Therefore, population aging demands more and more young people engaging as family caregivers. Informal caregiving can become an unexpected duty for anyone anytime. However, studies measuring the burden of informal caregivers are limited. We aimed to determine the caregiver burden, both from the perspective of the caregivers as well as that of their care recipients. Method: We used the baseline survey data from a cluster randomized controlled trial providing a community integrated intermediary care (CIIC) service for seniors in Chiang Mai, Thailand, TCTR20190412004. Study participants were 867 pairs of older adults and their primary family caregivers. Descriptive analysis explored the characteristics of the caregivers and binary logistic regression identified factors influencing the caregivers’ burden. Results: The mean age of family caregivers was 55.27 ± 13.7 years and 5.5% indicated the need for respite care with Caregiver Burden Inventory (CBI) scores ≥24. The highest burden was noted in the time-dependence burden domain (25.7%). The significant associated factors affecting CBI ≥24 were as follows: caregivers older than 60 years, being female, current smokers, having diabetes, and caring for seniors with probable depression and moderate to severe dependency. Conclusions: A quarter of caregivers can have their careers disturbed because of the time consumed with caregiving. Policies to assist families and interventions, such as respite service, care capacity building, official leave for caregiving, etc., may reduce the burden of families struggling with informal care chores. Furthermore, caregiver burden measurements can be applied as a screening tool to assess long-term care needs, complementing the dependency assessment. Finally, implementation research is required to determine the effectiveness of respite care services for older people in Thailand.

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Repositioning respite in consumer directed service systems

This paper was developed by Carers NSW Policy and Research team on behalf of, and with extensive input from, members of the Carer Respite Alliance (CRA), a working group formed in 2017 in response to increasing numbers of carers and other stakeholders in NSW expressing concerns about the state of the respite sector in NSW. This paper seeks to reposition the concept of carer respite within increasingly consumer-directed care service systems in NSW and provide an evidence base to support the ongoing provision and funding of supports that enable carers to take breaks from the caring role within these existing models.

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Racial Differences in Respite Use among Black and White Caregivers for People Living with Dementia

Objectives: To examine racial differences in respite utilization among a nationally representative sample of caregivers for persons living with dementia (PLwD). A secondary aim identified factors associated with respite utilization. Methods: Using data from the 2015 National Health and Aging Trends Study and National Study of Caregiving, we conducted binary logistic regression to examine racial difference in respite use among Black and white caregivers (n = 750). Results: 22% of the sample used respite for PLwD. Black dementia caregivers were 69% less likely (odds ratio: .31, p = .001) to use respite compared to white caregivers. Other factors associated with utilization included education, receiving help with caregiving, and providing care for more self-care/mobility tasks or to a Medicaid-enrollee.Discussion: Findings suggest that Black dementia caregivers may be at risk for less frequent use of respite and highlight the need to identify factors that promote respite use.

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Supporting family carers of children and adults with intellectual disability

Summary: The extra strains experienced by families who care for a relative with intellectual disabilities are well documented. The provision of overnight (respite) breaks or supports in the home are common ways of supporting family carers. Often demand exceeds supply. Using data from a national register in Ireland, child and adults who received overnight breaks and in-home support were identified along with the characteristics that distinguished them from families that did not have these services. Moreover, changes in provision over a 10-year period were monitored and variations in provision across the country were ascertained. Findings: Overnight breaks were the dominant form of family support in Ireland. However, they were available to fewer persons in 2017 compared to 2007, whereas the provision of home supports remained constant. Persons with severe and profound disabilities were those most likely to receive home supports or overnight breaks as were persons aged 30 years and over. There were persistent marked differences across the country in the provision of home supports, although the variation in the usage of overnight breaks had contracted somewhat in 2017. Applications: Additional investment is needed to provide supports for families, given the increasing numbers of persons with intellectual disabilities living at home. A wider range of support options would provide greater choice and arguably improve the cost-effectiveness of current resources. Frontline professionals, such as social workers, need to be to the fore in persuading service commissioners of these needs based on empirical data as well as their personal experiences.

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Multiple Sclerosis Adult Day Programs and Health-Related Quality of Life of Persons with Multiple Sclerosis and Informal Caregivers

Background: Multiple sclerosis adult day programs (MSADPs) offer life-enhancing services for individuals and informal caregivers affected by multiple sclerosis (MS), including medical care, rehabilitation therapies, nutrition therapy, cognitive training, tailored education, exercise programs, and social interaction. The purpose of this study was to examine the effects of MSADPs on health-related quality of life (HRQOL) and health care utilization of persons with MS and HRQOL and well-being of informal caregivers. Methods: Using a quasi-experimental design, outcomes between baseline and 1-year follow-up in persons with MS and informal caregivers who used MSADP services and a comparison group of similar persons with MS and caregivers who did not use MSADP services were compared. For persons with MS, outcomes included standardized measures of physical and mental HRQOL and health care utilization. For caregivers, outcomes included physical and mental HRQOL and well-being. Changes in outcomes between baseline and follow-up were examined using propensity score-weighted difference-in-differences regression analysis. Results: For persons with MS, MSADP use had a significant positive effect on 12-Item Short Form Health Survey physical component scores, although the difference was not clinically meaningful. Use of MSADPs did not have effects on any other outcomes for persons with MS or caregivers. Conclusions: Use of MSADPs did not show a clinically meaningful effect on HRQOL for persons with MS or informal caregivers. The MSADPs do not seem to offer sustained benefits to persons with MS or caregivers, but the possibility of initial short-term benefits cannot be ruled out.

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Leisure activity, gender and depressive symptoms among dementia caregivers: findings from the REACH II

Objectives: Providing care to individuals with dementia places burden on family caregivers, which may relate to depressive symptoms. Although leisure activities may serve as a coping resource to relieve caregiving stress, only a few studies exist on how leisure and depressive symptoms associate in dementia caregivers. Moreover, less is known about the role of gender in this relationship. Thus, this study examined the relationship among leisure activity, gender and depressive symptoms. Method: A cutoff score (≥10) on the short form of the Center for Epidemiological Studies Depression Scale was used to measure presence of depressive symptoms. Independent variables were frequency of engagement in and satisfaction with leisure activities. Results: Logistic regression analyses from 632 dementia caregivers in the Resources for Enhancing Alzheimer's Caregiver Health II Study showed that more frequent and higher satisfaction in leisure engagement were negatively related to having depressive symptoms. Moreover, the negative association between frequent leisure engagement and depressive symptoms was more pronounced among male caregivers. Conclusion: Providing respite care for dementia caregivers to engage in leisure can be a promising coping strategy for this population. Also, gender difference in leisure-depressive symptoms relationship suggests different support needed for male and female caregivers in addition to leisure. 

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Factors affecting the use of home-based services and out-of-home respite care services: A survey of family caregivers for older persons with dementia in Northern Norway

Background: Family caregivers contribute substantially to the care for older home-dwelling people with dementia, although community healthcare services tend to be underutilized. In this study, we aimed to explore the use and predictors of use of home-based and out-of-home respite care services available to older home-dwelling persons with dementia, as reported by the family caregivers. Method: A cross-sectional survey was administered to family caregivers (n = 430) in Northern Norway during April to November 2016. The use of healthcare services was categorized into two types according to principal component analysis: home-based services and out-of-home respite care services (R 2 = 44.1%). Predictors of service use were examined with bivariate correlation, multiple linear regression, and Poisson regression analyses. Results: The use of home-based services among persons with dementia was significantly higher for persons with advanced age, persons living in urban areas, persons living in an assisted living facility, persons living alone, and persons able to manage being alone for a short period of time. Among the family caregiver variables, higher age, status as a daughter, son, or other family member, higher educational level, and full-time employment also predicted greater use of home-based services. Same ethnicity was associated with use of fewer home-based services. The use of out-of-home respite care services was significantly higher among male persons with dementia and among those living in urban areas. In addition, fewer out-of-home respite care services were used by male caregivers or daughters of the care recipient, while the use was higher when the caregivers experienced more caregiving demands or had provided care for longer periods of time. Conclusions: These results indicate areas that policymakers and healthcare providers should consider to identify families who underutilize healthcare services and to achieve a more equal and efficient allocation of services in accordance with families' needs.

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Cost-effectiveness of an in-home respite care program to support informal caregivers of persons with dementia: A model-based analysis

Objectives: To evaluate cost-effectiveness of an in-home respite care program in addition to standard community-based dementia care to support informal caregivers of persons with dementia compared with standard community-based dementia care. Methods: An age-dependent decision-analytic Markov model was applied from a third-party payer and a societal perspective projecting results of a quasi-experimental study over a time horizon of 5 years assuming a repetition of the program every 6 months. Additionally, to deal with uncertainty and to test robustness of the model scenario, one-way and probabilistic sensitivity analyses were conducted. Results: Implementing the program resulted in a quality-adjusted life year (QALY) gain of 0.14 in favor of the invention group compared with controls and an incremental cost of 1270€ from the third-party payer perspective and of 1220€ from the societal perspective. Next, an incremental cost-effectiveness ratio of 9042€/QALY and of 8690€/QALY was found in the base case, from the third-party payer perspective and the societal perspective, respectively. The scenario, one-way sensitivity, and probabilistic analyses demonstrated robustness of the base-case results. Conclusion: This cost-effectiveness analysis suggests that an in-home respite care program in addition to standard community-based dementia care is a cost-effective approach compared with standard community-based dementia care only. These findings provide more insight into the value of such services for the patient, the caregiver, and for society.

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Effectiveness of respite care via short-stay services to support sleep in family caregivers

Family caregivers of older people who need care often experience sleep disorders, which can lead to various health problems. Although respite care is used in many countries, its effectiveness has not been fully demonstrated. We analyzed the sleep of family caregivers using actigraphy and heart rate spectral analysis to clarify changes in their sleep characteristics during short-stay respite care. Participants were all family caregivers living with an older person needing long-term care. The outcomes consisted of questionnaire responses, sleep/wake records, and R-wave to R-wave interval records. Quantitative evaluation of sleep revealed that caregivers’ median sleep time was 378.0 min, and median sleep efficiency was 94.7%. The low frequency (LF)/high frequency (HF) value was 1.722 for total sleep and 1.822 for the first half of the sleep period. The LF/HF for the first half of the sleep period was significantly different between caregiving and respite days. The respite day LF/HF was 1.567, which was significantly lower than on caregiving days. On respite days, cardiac sympathetic nervous activity among family caregivers was reduced during the first half of the sleep period. This suggests that regular use of short-stay services can improve caregivers’ sleep status, making this an effective form of respite care. 

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Perspectives of Australian family carers of people with dementia on the 'cottage' model of respite: Compared to traditional models of residential respite provided in aged care facilities

The majority of people living with dementia reside in the community and are often reliant on the support of informal carers to do so. Family carers face many challenges in supporting the person with dementia to remain at home, and short-term respite care is a valued service that offers a temporary break from the role. Respite cottages provide short-term care in a residential home-like setting with a limited number of clients and is a more flexible approach to accessing the service. Disproportionate use of cottage respite in Australia suggests this model is preferred over traditional respite within residential aged care facility (RACF) settings, yet limited research exists to compare these models. This study sought to understand the perceptions of carers who had used cottage respite in comparison to other models, and explore the contribution of cottage respite for supporting carers to continue in their role and maintain their care recipient (CR) living at home. Semi-structured interviews were conducted with 126 family carers who had used one of two New South Wales-based respite cottages within a 2-year period; 67 of whom had also used RACF respite. Thematic analysis revealed four main themes around the benefits of cottage respite: (a) an effective essential service, (b) flexibility, (c) familiarity and (d) appropriateness, especially for early stage or younger onset dementia. Carers indicated that the more homely, familiar and intimate cottage model of respite care was preferential to that of the larger, institutional-style RACF respite setting. Carers credited the cottage model of respite service with delaying their need for permanent residential placement by over 12 months. The cottage respite model provides an important avenue to supporting the individual needs of dementia dyads, with potential to delay permanent placement, and should be offered more broadly to provide people with more choice about their care. 

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Perceptions on connecting respite care volunteers and caregivers

The most common requirement for informal caregivers is to experience a respite or temporary break from their caregiving routine. Some initiatives have been undertaken to provide respite care through volunteer providers. We report on a qualitative study carried out in Santiago, Chile, to learn about the willingness of potential volunteers to provide respite care for bedridden older persons, as well as their willingness to use information and communication technologies (ICT) to connect to caregivers in a low-income neighbourhood within their own geographic district. A trustworthy institution that mediates the volunteer–caregiver relationship is considered to be important by potential volunteers. Potential volunteers were found to be willing to use ICT to provide respite care, sharing basic information about themselves. However, they were also aware of the digital skill gap that may exist between them and the caregivers and were distrustful of unknown websites that could connect them to care recipients. 

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Carers’ breaks for young carers and young adult carers: Guidance for commissioners and providers

This guidance is for commissioners, providers and others involved in the planning, shaping and delivery of support for young carers and young adult carers in transition, primarily in England. This guidance supplements the carers’ breaks guidance for adult carers. It will be of interest to commissioners within local authorities (including public health), and may be of interest to clinical commissioning groups (CCGs) and partners within both health and education such as GPs and schools. It will also be of interest to a wide range of providers – including those from the voluntary, community, private and public sectors, and not just those already providing young carers’ breaks and support.

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Carers need respite from care. COVID-19’s limiting the options & pushing many to breaking point

One in ten Australians provide care for a loved one, sustaining families and saving governments huge sums on care services. But what do they do now?

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"It has been fun. Super‐duper fantastic": Findings from a Danish respite programme to support young carers

Awareness of young carers' experiences and needs is low on governmental and societal levels in Denmark. This article presents findings from the first evaluation of a Danish respite programme, the Buddy Programme, which aims to provide support to young carers aged 5–15 years who experience serious, chronic or mental health problems and/or death of a parent or sibling. Over a four‐six month period, volunteer students from University College Copenhagen offer young carers the opportunity of respite through participating in ordinary activities such as play and sports. In 2017–2018, based on a child‐centred approach, we conducted a qualitative study with interviews focusing on how the Buddy programme affected the children. The interviews took place at programme start, halfway through, and after completion with 22 children and 21 parents, as well as single interviews with 20 Buddies assigned to families after completion. Three main themes were identified: (1) the Buddy programme as an activity, (2) how the Buddy Programme affected the children and (3) ending the Buddy programme and wanting to continue the friendship. Our findings emphasise the importance of fun and cosy activities that provide children with respite from the serious concerns that otherwise fill the lives of young carers. Being with a Buddy created a free space, allowing children to play undisturbed and to temporarily keep concerns and a guilty conscience at a distance. By offering friendship, Buddies provided opportunities for young carers to feel special, be seen, acknowledged and taken seriously as a child with valid and specific needs and interests. Our findings may help increase awareness of the needs and interests of young carers on governmental and societal levels.

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The Effect of National Family Caregiver Support Program Services on Caregiver Burden

Extant evidence on the effectiveness of caregiver programs in alleviating caregiver burden is mixed, underscoring the need for further investigations. This study evaluated the effect of the National Family Caregiver Support Program (NFCSP) educational services and respite care on caregiver burden. We used survey data from caregivers assigned to program (n = 491) or comparison (n = 417) group based on their reported use of NFCSP services. Adjusted difference-in-differences (DiD) analysis found an increase in mean burden scores for both groups from baseline to 6 or 12 months. Among program caregivers receiving ≥4 hr of NFCSP respite care per week (n = 307) and matched comparisons (n = 370), burden scores decreased slightly for program caregivers (-0.095 points), but increased for comparison caregivers (+0.145 points). The DiD (0.239 points) was not statistically significant. More research is needed to determine the minimum amount of respite care needed to positively impact caregiver burden.

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Multiple Stakeholders' Perspectives on Respite Service Access for People With Dementia and Their Carers

Background and Objectives People with dementia and carers do not always access respite services in a timely manner, or in some cases, at all. Although carers' perspectives on respite access have been explored, other stakeholder perspectives, especially providers and people with dementia, are underrepresented in the existing literature. The aim of this study was to synthesize multiple stakeholders' perspectives, including people with dementia, on accessing respite services in the context of dementia. Research Design and Methods Purposive maximum variation sampling was used. Semi-structured interviews were conducted with 35 key stakeholders, including people with dementia (n = 6), carers (n = 9), respite frontline staff (n = 4), respite managers (n = 8), primary care professionals (n = 3), and policy-makers/academics (n = 5). The process of consent is outlined. Data were interpreted inductively using thematic analysis. Reflexivity was considered throughout the research process. Results Three themes ("Service Acceptability," "Navigational Knowledge and Skills," "Constructing and Adjudicating Respite Need") were identified that relate to how access to respite services is negotiated between service providers and dyads. Discussion and Implications A number of the findings support previous research; however, novel findings discussed relating to the access negotiation process include (a) the ambiguous legitimacy of respite needs, in a system configured to deliver a biomedical model of care and which considers nonmedical care as a family responsibility, and (b) the constraining effects of disparate conceptualizations of "respite" between carers and providers. Future research should interrogate the appropriate boundaries of public responsibility in relation to respite service planning/delivery for dementia, with particular reference to client preferences for community and in-home provision. 

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Exploring employment as a space of respite and resistance for family caregivers

This paper challenges traditional definitions of work and leisure as separate concepts by suggesting that a space where individuals engage in employment (paid work) can, at the same time, be a space of respite (leisure) for employees who are also family caregivers. The research aims to better understand what caregivers perceive as ideal respite space, what that space means to them, how the space where employment takes place fits that ideal and what forces restrict caregivers' ability to engage with employment as a space of respite. The term space is used because a caregiver's presence in a particular space (inside or outside of a place) gives it meaning that is simultaneously social, political and emotional. We report on a qualitative intrinsic case study of primary caregivers who are both employed and providing care to relatives with dementia. Using a reflective iterative process, 12 participants were recruited and interviewed from two Canadian provinces in 2013/14. Using a non‐temporal view of respite facilitated the identification of employment as an important space for caregivers to experience effective respite. Although this connection has been noted by other scholars, our research goes beyond this to identify four forces that create challenges for caregivers who want to maintain engagement with employment as a space of respite. These forces are internalised socialisation, family and organisational pressures and government policy. In addition, this research is one of the first to suggest ways that caregivers resist these forces. In concluding remarks, we reflect on the limitations of the study and offer suggestions for further research aimed at elucidating the spatiality of caregiver respite and the complex and dynamic aspects of resistance. 

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Effectiveness of an in-home respite care program to support informal dementia caregivers: A comparative study

Objectives: Dementia is a major public health problem with important physical, psychosocial, emotional, and financial consequences for patients, their caregivers, and society. Since patients prefer to be managed at home, extensive research has been conducted into effectiveness of psychosocial interventions to support informal caregivers. The aim of this study was to assess the effectiveness of an in-home respite care program. Methods: In a prospective quasi-experimental study, 99 dyads who received an in-home respite care program were compared at 6 months post-baseline, with 99 matched dyads receiving standard dementia care. Additionally, the short-term effect of the program was evaluated 14 to 15 days post-intervention. The primary outcome was caregiver burden. The secondary outcomes were: desire to institutionalize the patient, caregiver quality of life, and frequency and impact of behavioral problems. Mixed model analyses were performed to evaluate the impact of the intervention. Results: After 6 months, no significant difference on caregiver burden was observed, but intervention group caregivers had a significant lower desire to institutionalize the patient compared with control group caregivers (adj.diff = -0.51; p = .02). Shortly after the program, intervention group caregivers also had a significant lower role strain (adj.diff = 0.75; p = .05), and a lower burden on social and family life (adj.diff = 0.55; p = .05) compared with baseline. Conclusions: This study was the first comparative study to investigate effectiveness of an in-home respite care program to support informal caregivers of persons with dementia. The results partly confirm earlier positive findings from explorative studies. 

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48 Accessing Respite Services for People with Dementia and Their Carers: A Qualitative Study with Multiple Stakeholders

Background People with dementia and carers do not always access respite services in a timely manner, and in some cases, they do not access respite services at all. While carers' perspectives on respite access have been explored, other stakeholder perspectives, especially those of people with dementia, are under-represented in the existing literature. The aim of this study was to synthesise multiple stakeholders' perspectives, including people with dementia, on accessing respite services. Methods Purposive sampling was employed. Semi-structured interviews were conducted with 35 key stakeholders, including people with dementia (N=6), carers (N=9), respite front-line staff (N= 4), respite managers (N=8), primary care professionals (N=3) and policy-makers/academics (N=5). Informed consent was obtained from all stakeholders who could give this. Dewing's 'process consent' method was employed in relation to people with dementia. Data were interpreted inductively using thematic analysis. We aimed to move beyond the semantic level of meaning, and to interpret patterns of meaning in the data. Reflexivity was considered throughout the research process. Results Three themes ('Service Acceptability'; 'Navigational Knowledge and Skills'; 'Constructing and Adjudicating Respite Need') were identified that relate to how access to respite services is negotiated between service providers and dyads. Conclusion A number of the findings support previous research; however novel findings discussed relating to the access negotiation process include 1) the ambiguous legitimacy of respite needs, in a system configured to deliver a biomedical model of care and which considers non-medical care as a family responsibility, and 2) the constraining effects of disparate conceptualisations of 'respite' between carers and providers. Future research should interrogate the appropriate boundaries of public responsibility in relation to respite service planning/delivery for dementia, with particular reference to client preferences for community and in-home provision.

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It is something special: How children and their parents experience a camp for young people who care for a parent with a severe physical illness

Recreational camps for children play an important role in coping with the illness of a family member. This paper aims to describe the experience of a young-carer summer camp in Austria from the perspective of the attending children who care for a parent with severe physical illness as well as their diagnosed and non-diagnosed parents who remained at home. Nineteen qualitative interviews with children and their parents were conducted and analyzed according to qualitative summarizing content analysis procedure. The findings show a familial decision-making process and the ambivalent expectations and feelings of the children prior to the camp. The camp itself is a place where children feel looked after and where they can enjoy adventure activities. It is also a place where they are among themselves and can make friends and talk about their feelings in a secure and private environment. During the camp, the remaining parents try to spend most of their time focusing on themselves and their partnership. The camp also gives the children a glimpse of another way of living with new freedoms that cannot be maintained when they come home. These findings indicate that camps can make an important contribution to addressing young carers’ needs but should also initiate a debate on more sustainable relief measures for children with care responsibilities. 

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Day Care for People with Dementia: A Qualitative Study Comparing Experiences from Norway and Scotland

Potential benefits from day care attendance are reported in the literature for both people with dementia and caregivers, although the evidence-base is limited. The study aimed to explore and compare experiences of day care services for people with dementia as described by day care attendees and their caregivers in Norway and Scotland. Whereas day care receives prominence in Norway’s national dementia plan, Scotland does not highlight day care in its national dementia strategy. A qualitative cross-national comparative study was undertaken. Semi-structured interviews were conducted with 17 people with dementia and 17 caregivers in Norway, and 19 people with dementia and 15 caregivers in Scotland. Data were analyzed thematically and comparatively to explore the experiences and outcomes of the participants. Findings indicate positive outcomes from day care for both people with dementia and caregivers. Satisfaction with services related to meaningful activities, getting out of the home, strengthening social connections and careful staff facilitation to create a positive and welcoming atmosphere. There were strong similarities in the content of services and experiences reported in the two countries. Some minor differences were noted, with caregiver support being an area of notable divergence in experiences. Specialist day care for people with dementia seems to provide important support and positive outcomes for people with dementia, and respite and reassurance for their caregivers. More research is needed to further explore the effect of day care designed for people with dementia both on the attendees and their caregivers. 

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DESKK Study - Development and testing of a dementia-specific respite care concept with a mobility and counselling programme: Study protocol

Introduction: Specific mobility programmes can delay functional decline in people with dementia (PwD). Family caregivers (FCs) can be relieved from care-related burden by counselling services. Respite care is a short-term inpatient care service (1-8 weeks of stay). Respite care centres (RCCs) can function as support structures for dementia care arrangements through caring-based mobility training of PwD and counselling sessions for their FCs. However, no systematic mobility or counselling programmes exist in this setting in Germany or the rest of the world. The aim of the development and testing of a dementia-specific respite care concept (DESKK) study is the development and testing of an evidence-based mobility and counselling programme for PwD and their FCs that is suitable for the respite care setting. Methods and analysis: A pilot-based, quasi-experimental evaluation study will be conducted in a specialised RCC for PwD. To evaluate the acceptance and usability of the development and testing of a DESKK concept, qualitative data will be collected from the RCC staff and FCs via semistandardised interviews. Quantitative data will be collected using instruments to assess effect tendencies of the concept related to mobility (PwD) and burden (FCs). Furthermore, a mixed-methods triangulation approach will be conducted. Ethics and dissemination: The protocol, informed consent and accompanying material given to patients were submitted by the investigator to the Ethical Review Committee of the German Society of Nursing Science. The project was examined and finally approved on 31 January 2017 (Number: 16-27). Prior to obtaining written consent for study participation, information must be given to all of the study participants in verbal and written form. The results of the study will be presented at national and international conferences and published in peer-reviewed journals. After the concept is finalised, a practice-friendly manual will be developed in which implementation components are described for other RCCs. 

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Assessing mechanisms of benefit in adult day programs: the adult day services process and use measures

Objectives: A limitation of adult day service (ADS) research is that there remains little understanding of how these community-based long-term care programs operate to benefit clients or family caregivers (i.e. the process of ADS use). The purpose of this study was to validate the ‘ADS Process and Use Measures’ (APUM) which were developed to assess such mechanisms. Method: Participant observation and semi-structured interviews in two ADS settings resulted in qualitative data to inform a conceptual model, subscales, and Likert-scale items. Three experts in ADS research reviewed the initial 129-item version of the APUM to establish content validity, and 27 family caregivers of current or prior ADS clients provided feedback on face validity of a subsequent 58-item version. Results: Principal components and confirmatory factor analyses on a sample of 269 family members of ADS clients recruited from 90 programs throughout the U.S. established a measure featuring 5 domains, 12 reliable subscales, and 49 items. Analysis of discriminant and convergent validity found that various subscales from four of the domains (Why ADS is Used, Events Prior to Use, Why ADS Does Not Work, and Pathways to Benefits) were significantly associated (p < 0.05) with family caregiver distress and ADS client quality of life variables. Conclusion: The ADS Process and Use Measures effectively assess mechanisms of program benefit and could help to enhance the overall quality of these critical community-based long-term care options for older persons and their families. 

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Carers at breaking point: Making the case for carers' breaks in England

This report shows the that majority of unpaid carers are unable to take sufficient breaks and also highlights an unfair and unequal provision of carers’ breaks services across England. The report is based on the results of a survey of over 1,000 carers in the UK and a freedom of information request to local authorities and clinical commissioning groups across England. Only 8 per cent of carers responding to the survey felt they had been able to take sufficient breaks. Almost half of respondents said they had not been able to take breaks even if they would have liked to, with 38 per cent f those not being able to afford replacement care. Carers who hadn’t taken a break from caring within the last year were also more likely to report that their mental or physical health had suffered as a result of caring. The Freedom of Information request also found wide variation in the amount of money local authorities and clinical commissioning groups are spending on carers’ breaks through the dedicated Better Care Fund. The report makes recommendations to improve access to breaks for carers, including increased funding for carers’ breaks through the Better Care Fund and for local authorities to make breaks a key part of their preventative work. 

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Give me a break: Design for communication among family caregivers and respite caregivers

This study focuses on solutions to issues that arise from gaps in communication between primary family caregivers of older adults and respite caregivers. We collected data through 18 semi-structured interviews with primary family and respite caregivers and qualitatively analyzed the interviews to extract common needs. Participants identified three main needs that our designs address: building trust through status updates, learning routines & care management, and accessing technology. Based on those needs, we designed a prototype of an application which connects primary family caregivers with respite caregivers and facilitates communication between the involved parties. This design can serve as a framework for future work designed to improve elder care in general, the well-being of caregivers, and the efectiveness of respite care. 

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Adult Day Service Use Decreases Likelihood of a Missed Physician's Appointment Among Dementia Caregivers

BACKGROUND/OBJECTIVE Adult day services (ADSs) that provide community‐based supervised support for persons with dementia (PWD) may also function as a respite for familial caregivers to attend to self‐care needs. Guided by a revised version of the Andersen Healthcare Utilization Model, the objective of this study was to identify the association between use of ADSs and a missed physician's appointment among family caregivers for community‐dwelling familial PWD. A secondary objective was to identify other predisposing, enabling, and need factors associated with a missed physician's appointment. DESIGN Secondary analysis of baseline, cross‐sectional data from two randomized controlled trials (Advancing Caregiver Training, n = 272; and Care of Persons With Dementia in Their Environments, n = 237). SETTING Community. PARTICIPANTS Community‐dwelling caregivers for PWD (n = 509). MEASUREMENTS Missed physician's appointment was measured using the caregivers' self‐report of one or more missed physician's appointments (yes/no) in the past 6 months. ADS use was measured using the caregivers’ self‐report of ADS use (yes/no). RESULTS Over a third of the caregivers utilized ADSs for their PWD. Caregivers who utilized ADSs for their familial PWD were 49% less likely (95% confidence interval = 0.32‐0.81) to miss a physician's appointment in the past 6 months. More black compared to white caregivers missed appointments regardless of ADS use. Caregivers with increased chronic health conditions were more likely to miss a physician's appointment compared to those with fewer conditions. CONCLUSION ADSs’ provision of respite enables caregivers the time to address self‐care needs by decreasing the likelihood that caregivers miss a physician's appointment. Findings suggest that ADSs may promote positive health behaviors for caregivers and should be expanded as part of comprehensive dementia care for families. Factors associated with missed physician appointments need further examination and intervention to support black caregivers.

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Supporting you to take a break

Finding time to have a break from your caring role is vital – welcome to our video series

  • Facing guilt and anxiety: It’s all too easy to lose yourself in your caring role, but you owe it to yourself to look after yourself too
  • Where do I start? Carers share their experiences and tips, explaining why it’s vital to get advice and support
  • Sources of support: Help is available in many forms. Whether you need peer support or professional guidance, you’re not alone
  • Importance of a break - Wales spotlight: Carers in Wales share their views on how taking a break is possible and important
  • Carer stories: It often helps to hear from people in the same situation. Here, carers share their personal experiences and tips
  • Need nore information? This is where we provide all the detail about the variety and range of breaks available to support carers
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Caregiver Burdens of Family Members with Alzheimer's Disease

Alzheimer's disease is the sixth leading cause of death in the United States and more than five million Americans are living with the disease (Alzheimer's Association, 2016). Alzheimer's disease takes a devastating toll on caregivers. According to Richardson, Lee, Berg-Weger, and Grossberg (2013), many factors influence the perceived burden of caring for a relative or friend with Alzheimer's disease (Richardson et al., 2013). These factors include characteristics of the caregiver, such as kinship ties, gender, psychological resources, and coping strategies. The purpose of this study was to compare the perceived caregiver burdens of the primary, full-time, at-home caregiver of patients with Alzheimer's disease to the perceived caregiver burdens of patients with Alzheimer's disease who attend an adult day care center. Using a descriptive quantitative research design, data was collected using the Caregiver Burden Inventory (CBI), which is a 24-item measure to assess caregivers of family members with Alzheimer's disease and obtain demographic data. A conceptual model developed by Neuman (1995) provided the health promotion and primary prevention framework of this study. Findings of the study indicate no difference in the perceived caregiver burdens whether the caregiver takes care of the family member with Alzheimer's disease 24 hours a day or has respite from care five days a week at an adult care center. Additionally, findings also indicate the need to refine community and professional understanding of the challenges caregivers face, and provide valuable information regarding necessary improvements of services for caregivers of patients with Alzheimer's disease.

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"We Build Vacations Into Everyday Life": Rethinking Carers' Restorative Experiences Through The Lens of Place

This article proposes a reimagining of the concept of carer respite. It explores the role of place in eliciting restorative experiences for carers and reconsiders the mechanism of 'respite as an outcome'. Findings from a Canadian-based study about dementia carers' experiences in their neighbourhoods illustrate that everyday places, whether in the home or in the social or built environment of the neighbourhood, facilitate their connections to themselves and others, leading to a sense of restoration. As such, respite is the outcome not necessarily of mental or physical removal from the care situation, but rather of the (em)placing of care within everyday life.

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Information-sharing with respite care services for older adults: a qualitative exploration of carers' experiences

Respite services play an important role in supporting older adults and their carers. When an older person is unable to fully represent themselves, provision of respite care relies on effective information-sharing between carers and respite staff. This study aimed to explore, from carers' perspectives, the scope, quality and fit of information-sharing between carers, older people and respite services. An explorative, cross-sectional qualitative study involving a purposive sample of 24 carers, recruited via carer support groups and community groups in voluntary organisations, was undertaken in North East Scotland. Data were collected from August 2013 to September 2014, with participants taking part in a focus group or individual interview. Data were analysed systematically using the Framework Approach. The multiple accounts elicited from carers identified how barriers and facilitators to information-sharing with respite services changed over time across three temporal phases: 'Reaching a point', 'Trying it out' and 'Settled in'. Proactive information-sharing about accessibility and eligibility for respite care, and assessment of carers' needs in their own right, were initially important; as carers and older people moved on to try services out, time and space to develop mutual understandings and negotiate care arrangements came to the fore; then, once shared expectations had been established, carers' chief concerns were around continuity of care and maintaining good interpersonal relationships. The three temporal phases also impacted on which modes of information-sharing were available to, and worked best for, carers as well as on carers' perceptions of how information and communication technologies should be utilised. This study highlights the need for respite staff to take proactive, flexible approaches to working with carers and to make ongoing efforts to engage with carers, and older people, throughout the months and years of them utilising respite services. Information and communication technologies have potential to enhance information-sharing but traditional approaches will remain important. 

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Caregiving load and respite service use: a comparison between older caregivers and younger caregivers

Study aims were to explore differences in predictors of respite care use between older (aged 65+) and younger caregivers (aged 18–64 years), and associations between caregiving load and respite care use using multivariate logistic regression analysis and unpaid caregiver (n= 10,500) data from the 2009 California Health Interview Survey. Caregiving load comprised number of care recipients, weekly hours in caregiving, and caregiving duration. Variables with a significant association with respite care for older caregivers were female gender, income, and health insurance. For younger caregivers, respite care use associations were with ethnicity, caregiving relationship, education, and availability of substitute help.

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Barriers to non-residential respite care for adults with moderate to complex needs: a UK perspective

Respite aims to alleviate the stress and burden of caring for someone with an intellectual disability and/or autism. Respite can take place in a number of different ways, but most commonly occurs in a residential setting. Based on survey and interview data with carers (CAs), service users and stakeholders (STs) in a northern city in England, this article explores some of the perceived or actual barriers to availing ‘non-residential’ respite. A number of barriers to non-residential respite are identified. Residential respite appears to be the default conceptualisation of ‘respite’ for carers, service users and stakeholders. Persuading carers, service users and stakeholders to give up the familiarity and safety of residential respite in favour of a non-residential alternative will be challenging unless those involved are more informed. Limitations and directions for future research are suggested.

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Key stakeholders' experiences of respite services for people with dementia and their perspectives on respite service development: a qualitative systematic review

Background: Respite services provide a break in the caregiving relationship for people with dementia and their carers, however they are often under-used and service acceptability can be low. This study aims to understand key stakeholders' experiences of respite services for people with dementia, with a view to informing respite service development. Methods: A systematic search was conducted of the Pubmed/MedLine, Embase, Cinahl, PsychInfo, Scopus, Web of Science, and Cochrane databases (1980-2016, English) with fixed search terms relating to 'respite' and 'dementia', following PRISMA guidelines. Noblit and Hare's approach to meta-ethnography was employed. Key concepts were identified across the papers and reciprocal and refutational translation techniques were applied to primary studies; findings were synthesized into third order interpretations and finally, a 'line-of-argument' was developed. Results: In total 23 papers were reviewed, which described 20 independent samples across 12 countries. The views of 889 participants were synthesized (13 people with dementia, 690 carers, 44 'service providers', 52 frontline staff, 70 managers, 12 volunteers, six academic/policy-makers, and two independent consultants). Five key concepts were identified and outlined i.e. 1) the transition to service use 2) expanding organizational capacity 3) dementia care quality 4) building a collaborative care partnership and 5) dyad restoration. There was broad agreement around the key areas for service development across the range of stakeholders (flexible and responsive person-centred care, meaningful activity for people with dementia, enhanced client-service communication and informational support). However, there was clear divergence in stakeholder perspectives around the barriers to implementation of such developments. Organizational tension was evident between frontline staff and management in respite services, hindering the cultural change necessary to facilitate service development in line with dyad's needs and preferences. Conclusion: Respite services must surmount internal organizational barriers to change, and cultivate a collaborative solution-focused care culture, which acknowledges the centrality of the dyad and their care preferences. Future research should explore the development of alternative/modified community respite service models, which have greater capacity to be responsive to the needs of each individual dyad. The perspectives of people with dementia must be included in research in this area going forward.

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The influence of day care centres designed for people with dementia on family caregivers - a qualitative study

Background: Dementia is one of the most challenging age-related illnesses for family caregivers, whose care-related burden is well known. Research indicates that day care centres (DCCs) can reduce the caregiver burden and help family caregivers to cope with demands; however, the current body of knowledge is still tentative and inconsistent, and more research is recommended. The aim of this study is to provide an extended understanding of the situation of family caregivers and to examine to what extent DCCs can meet their need for support and respite. Methods: This study has a qualitative descriptive design using in-depth interviews with 17 family caregivers of people with dementia attending DCCs. The data analysis was undertaken using systematic text condensation. Results: Caregivers experience a complex role, with added responsibilities, new tasks, and emotional and relational challenges that are expressed through distressing emotions and demands for interaction. Additionally, the caregiving role leads to positive experiences, such as acceptance and adaptation, support and help, and positive changes in the relationship. Day care relieves family caregivers by meeting the person with dementia’s needs for social community, nutrition, physical activity, and structure and variety in everyday life. Using a DCC led to a higher quality of time spent together and easier cooperation, but it also produced some hard feelings and challenging situations. DCCs gave the caregivers a feeling of freedom and increased the time available to be spent on their own needs, to be social and to work or do practical tasks undisturbed. Conclusions: DCCs for people with dementia can give family caregivers support and relief and have a positive impact on the relationship between the family caregiver and the person with dementia. A more individualized program, in addition to flexible opening hours, would make DCCs even more effective as a respite service, positively influencing the family caregiver’s motivation and ability to care and postponing the need for nursing home placement.

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Knowledge, help-seeking and efficacy to find respite services: an exploratory study in help-seeking carers of people with dementia in the context of aged care reforms

Research highlights the need for carers of people with dementia to acquire relevant and timely information to assist them to access appropriate respite services. Unfortunately, negative experiences of information-seeking can create additional stress for carers and contribute to delays in up-take, or not using respite services at all. Methods: Cross-sectional survey data was collected from a convenience sample of n = 84 carers of older people with dementia living in the Illawarra-Shoalhaven region of NSW, Australia. We assessed knowledge, attitudes, information seeking behaviours, and unmet need for respite services in 2016, following national aged care reforms. Results:  Over the previous 12 months, 86% of carers sought respite service information. The majority (73%) of all carers reported an unmet need for respite services, and were relying on personal networks to provide support for respite information. Few utilised the new government gateway ‘My Aged Care’ phone line (11%) or website (25%). However, 35% used a pre-existing helpline to access short term or emergency respite. We found a preference for interpersonal information sources, including local doctor (65%), professionally and volunteer led carer support groups (49%), and family and friends (46%). Those using four or more information sources showed higher capacity to name local respite services. Respite service information seekers were more likely to be caring for someone with behavioural problems, to have received assistance to access services, and to have used respite services in the past 3 to 6 months. Conclusions: New reforms in the Australian aged care sector have not adequately responded to the needs of carers of people with dementia for respite service information and support. Wider, community-based messaging promoting positive service options and the provision of active personal support is required to address the unmet need for respite in carers of people with dementia.

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Effects of home-based long-term care services on caregiver health according to age

Background: Caregiver health is a crucial public health concern due to the increasing number of elderly people with disabilities. Elderly caregivers are more likely to have poorer health and be a care recipient than younger caregivers. The Taiwan government offers home-based long-term care (LTC) services to provide formal care and decrease the burden of caregivers. This study examined the effects of home-based LTC services on caregiver health according to caregiver age.

Methods: This cross-sectional study included a simple random sample of care recipients and their caregivers. The care recipients had used LTC services under the Ten-Year Long-Term Care Project (TLTCP) in Taiwan. Data were collected through self-administered questionnaires from September 2012 to January 2013. The following variables were assessed for caregivers: health, sex, marital status, education level, relationship with care recipient, quality of relationship with care recipient, job, household monthly income, family income spent on caring for the care recipient (%) and caregiving period. Furthermore, the following factors were assessed for care recipients: age, sex, marital status, education level, living alone, number of family members living with the care recipient, quality of relationship with family and dependency level. The health of the caregivers and care recipients was measured using a self-rated question (self-rated health [SRH] was rated as very poor, poor, fair, good and very good).

Results: The study revealed that home nursing care was significantly associated with the health of caregivers aged 65 years or older; however, caregivers aged less than 65 who had used home nursing care, rehabilitation or respite care had poorer health than those who had not used these services. In addition, the following variables significantly improved the health of caregivers aged 65 years or older: caregiver employment, 20% or less of family income spent on caregiving than 81%–100% and higher care recipient health. The involvement of daughters-in-law, rather than spouses, and care recipient health were positively related to the health of caregivers aged less than 65 years.

Conclusions: The findings suggest that home-based LTC service use benefits the health of elderly caregivers. By contrast, home-based LTC service use may be negatively correlated with the health of the caregivers aged less than 65 years.

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The impact of institution use on the wellbeing of Alzheimer's disease patients and their caregivers

In France, temporary institutionalization solutions for dependent elders have been encouraged since the early 2000s. They are targeting patients who are maintained at home, but may need temporary solutions to adjust the constraints of caregivers, e.g. to facilitate transitions between several informal care providers or to allow informal caregivers to leave for holidays. However, the influence of these solutions on dependent elders and their caregivers has not been explored yet. We use French longitudinal data (REAL.FR, 686 elders and their primary caregivers followed between 2000 and 2006) to explore the impact of institution placement on the wellbeing of both Alzheimer's disease patients and their primary informal caregivers. The data distinguishes permanent placements in institution from temporary stays. Using fixed-effect models, we quantify the change in patients' quality of life and caregivers' burden of care following the placement of patients. We find that permanent and temporary stays are associated with a decrease in informal caregivers' burden. However, only permanent stays lead to an improvement of patients' quality of life. Hence, taken together, the results suggest that while long-run placements may maximize the wellbeing of all the members of a household (patient and caregiver), this is not necessarily the case of short-term placements.

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Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare

Objective: To explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories.; Design: A qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction.; Setting: Community settings and nursing homes in the Netherlands.; Participants: 19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers).; Results: The participants' responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare.; Conclusion: Shared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professionals can play a crucial role in facilitating the possibilities for a try-out period.

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Aging in Place in Every Community: Social Exclusion Experiences of Parents of Adult children With Autism Spectrum Disorder

This article offers an examination of aging processes of lifelong caregivers and the possibilities for social exclusion place experienced by parents of adult children with autism spectrum disorder (ASD). This study of parental caregivers (n = 51) sheds light on how enduring caregiving roles can lead to social exclusion in three ways: misunderstanding of ASD and stigma, the complexity of the caregiving roles, and impact on daily routines including challenges with long-term planning for both the adult children and the parental caregivers. Implications for practice to address social exclusion include education and building greater communication ties among family member for family members and advocacy for more and higher quality services including respite care. This article concludes with discussion of the impact of this aging, yet caregiving population and the need for knowledge about aging processes and anticipating aging for these caregivers. 

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Evaluation of a West Australian residential mental health respite service

Family members continue to be the predominant providers of support, care and accommodation for loved ones with mental health issues, and empirical studies suggest that accessing mental health respite can be helpful for both carers and consumers. However, the availability of, and access to, this respite in Australia is far from optimal. Major issues have also been identified such as low utilisation, the inappropriate and inflexible nature of services and the inability of services to respond to situations where multiple needs exist. This article presents findings from a small evaluation of a pilot residential respite service. Semi‐structured interviews were conducted with eight family members/carers and four consumers using the service, and five service providers. In addition, anonymised sociodemographic information about all users of the service in the first 9 months of its operation were analysed. Reflecting the current limitations around respite options, the majority of family members/carers and consumers were appreciative of, and satisfied with, the service. The research highlighted issues such as availability and suitability of respite, particularly when consumers had multiple and unmet needs. Mental health residential respite is often a stopgap in crisis situations and intersects with the difficulty of planning respite and shortages in affordable supported accommodation. Furthermore, the ramifications of individualised funding for people with “psychosocial disability” in the new Australian National Disability Insurance Scheme (NDIS) remain unclear. While family members and carers may benefit indirectly from NDIS funding, it is especially important at this time that the need for more suitable, recovery‐oriented respite services is highlighted. 

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Effects of respite care training on respite provider knowledge and confidence, and outcomes for family caregivers receiving respite services

Respite services are vital in supporting informal caregivers in need of a break from their caregiving duties. A respite training program aimed at developing respite provider competence and improving caregiver well-being was evaluated. Trainees experienced significant growth in their perceived respite knowledge and confidence to deliver respite from pretraining to posttraining. An objective core competency assessment confirmed posttraining knowledge in 10 core areas of respite. Family caregivers provided more favorable ratings on various measures of their well-being while receiving respite from a trained provider compared to before respite began and if respite were to end. Findings suggest that formal training prepares providers to deliver quality respite resulting in improved caregiver outcomes. 

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"Like a drawing of breath": leisure-based art-making as a source of respite and identity among older women caring for loved ones with dementia

Background: Caring for a family member with dementia is stressful. This study explores carers' experiences of leisure-based art-making, and its contribution to psychological well-being. Method: This study interviewed six women (>60 years old) with lengthy experience of caring for a relative with dementia. All engaged regularly in art-making. Findings were inferred through Interpretative Phenomenological Analysis. Results: Participation in art-making promoted positive identity, and resilience for care-giving. It offered temporary respite from caregiving demands, helping participants maintain contact with the richness of the external world, and freedom from confinement. Artmaking facilitated meaningful connections with others, including the person with dementia, and enabled positive feedback. Participants whose loved ones had recently died or moved to residential care, processed, in oblique, possibly symbolic ways, the end of their intense involvement in care-giving. Conclusions: The findings suggest that meaningful creative leisure occupations may help to protect the psychological well-being of caregivers, promoting resilience.

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The experience of respite during home-based family caregiving for persons with advanced cancer

The purpose of this qualitative interpretive study was to explore the experience of respite during home-based family caregiving for persons with advanced cancer. Fifteen caregivers were interviewed twice after the death of their family member. Three main themes emerged from the data analysis. First, caring for a dying family member at home is an emotionally intense, exhausting, and singular experience, set in a world apart from everyday life patterns. Second, the caregivers; differentiated between cognitive breaks and physical (getting away from) breaks of respite. To achieve a cognitive break and yet remain within the caregiving environment was viewed as important, whereas the physical separation from it was significant only if it contributed in some meaningful way to the caregiving. Third, the meaning of respite is rooted in the desire to bring a measure of quality and normalcy to the life of the dying person. Respite means staying engaged in living life with the dying family member.

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Seeking respite: issues around the use of day respite care for the carers of people with dementia

Ageing in Place policies have transferred responsibility for many frail elderly people and those living with dementia from residential to in-home care. Despite this placing a greater obligation on families, in Australia carers continue to under-use day respite services. This qualitative design study identified issues around the use of day respite care from the perspective of the family carer, focusing on barriers to attendance and strategies to facilitate attendance. Telephone interviews were held in 2007 with Tasmanian carers whose family member refused to attend day respite care (ten carers) and those whose family member attended (17). Carers considering day respite care were often overwhelmed by the quantity of information, confused about the process, and worried about the recipient's safety in an unfamiliar environment. They felt anxious about public acknowledgement of the condition leading to fear of embarrassment. Day respite care users appreciated the break it provided them and the opportunity for their family member to socialise. To facilitate a greater uptake of day respite care, reliable information sources and strategies to help carers deal with the emotions they face on a daily basis, together with a wider social acceptance of dementia, are important. Furthermore, carers need an opportunity to talk with others, enabling them to gain support from those who have successfully introduced a family member to day respite care.

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Ticket to ride

Explains how Lancashire social services' voucher scheme is giving carers more choice and flexibility over respite care.

Factors affecting the decision to place a relative with dementia into residential care

AIM: To find out the reasons why carers might decide that they could not continue caring for a relative with dementia at home. METHOD: Semi-structured interviews with carers of relatives who have dementia, before placing their relatives into residential care and then again four months after that placement. N=4. RESULTS: Wandering, aggression, incontinence and physical dependency in people who have dementia are factors that might lead carers to consider placing their relatives into residential care; stress associated with Christmas can be another influencing factor. CONCLUSION: Carers looking after a relative who has dementia would benefit if the relative was provided with increased day care and home respite sitting services; services should be increased at Christmas; and support staff should be knowledgeable about the specific needs of people who have dementia and their carers. 

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8 out of 10 carers at breaking point

During National Learning Disability Week, Mencap launched its Breaking Point campaign to get more short breaks for family carers. Mencap's survey showed that 6 out of 10 carers of people with severe or profound learning disabilities surveyed by Mencap were getting no short break service. Many local authorities do not see these families as a priority. Mencap wants spending in this area to be closely checked. As part of a campaign, people emailed their MP. So far, more than 1,000 people have emailed their MP. [Journal abstract]

Respite care as a community care service: factors associated with the effects on family carers of adults with intellectual disability in Taiwan

Background This study examines the effects and associated factors of respite care, which was legislated as a community service for adults with an intellectual disability (ID) in Taiwan in 1997.

Method A total of 116 family carers who live with an adult with ID and have utilised the respite care program were surveyed using standardised measures.

Results The results suggest that the most notable effects of respite care include improvement in the carers' social support and life satisfaction, and relief of psychological stress and overall burden of care. The factors associated with these effects include the way the participants have used the respite care and the users' individual characteristics.

Conclusions How families used the respite care, whether the carers practised a religion, and where the families resided, were the most significant factors in determining the effectiveness of the respite. Suggestions are made for making access to information about the program more widely available, and for extending the availability and duration of the service.

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Nurses' Perceptions of Their Relationships with Informal Carers in Institutional Respite Care for Older People

The purpose of this study was to describe nurses' experiences of their collaboration and relationships with family members in institutional respite care for the elderly. The family has a particularly important role in respite care, which is an extension of care provided at home. However no published studies were found on this subject. The data were collected through qualitative interviews (N=22). Content analysis of the nurses’ descriptions of their collaboration with family members yielded four main categories as follows: (1) conscious ignoring, (2) attempting to understand the family’s situation, (3) hinting at private family matters, and (4) being a friend. The results lend support to earlier findings which emphasize the complexity of relationships between nurses and family carers. A novel finding here is that these relationships may also develop into friendships. Greater emphasis must be placed on primary nursing so that the nurse and informal carer can build up a genuine relationship of trust. If periods of respite care are to help older people and their families to manage independently, it is imperative that nurses have the opportunity to visit their patients at home.

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Improving caregiving competence, stress coping, and mental well-being in informal dementia carers

AIM: To study the effectiveness of Reitman Centre “Coaching, Advocacy, Respite, Education, Relationship, and Simulation” (CARERS) program, which uses problem-solving techniques and simulation to train informal dementia carers.

METHODS: Seventy-three carers for family members with dementia were included in the pilot study. Pre- and post-intervention data were collected from carers using validated measures of depression, mastery, role captivity and overload, caregiving competence and burden, and coping styles. To assess program effectiveness, mean differences for these measures were calculated. One-way ANOVA was used to determine if change in scores is dependent on the respective baseline scores. Clinical effects for measures were expressed as Cohen’s D values.

RESULTS: Data from 73 carers were analyzed. The majority of these participants were female (79.5%). A total of 69.9% were spouses and 30.1% were children of the care recipient. Participants had an overall mean age of 68.34 ± 12.01 years. About 31.5% of participating carers had a past history of psychiatric illness (e.g., depression), and 34.2% sustained strained relationships with their respective care recipients. Results from carers demonstrated improvement in carers’ self-perception of competence (1.26 ± 1.92, P < 0.0001), and significant reduction in emotion-focused coping (measured by the Coping Inventory of Stressful Situations, -2.37 ± 6.73, P < 0.01), Geriatric Depression scale (-0.67 ± 2.63, P < 0.05) and Pearlin’s overload scale (-0.55 ± 2.07, P < 0.05), upon completion of the Program. Secondly, it was found that carers with more compromised baseline scores benefited most from the intervention, as they experienced statistically significant improvement in the following constructs: competence, stress-coping style (less emotion-oriented), sense of mastery, burden, overload.

CONCLUSION: Study results supported the effectiveness of the CARERS Program in improving caregiving competence, stress coping ability and mental well-being in carers caring for family members with dementia.

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What are the factors that facilitate or hinder resilience in older spousal dementia carers? a qualitative study

Objectives: Much is known about the factors making caring for a spouse with dementia burdensome. However, relatively little is known about factors that help some spouses become resilient. We define resilience as ‘the process of negotiating, managing and adapting to significant sources of stress or trauma’. We aimed to assess whether spousal dementia carers can achieve resilience and to highlight which assets and resources they draw on to facilitate or hinder resilience, using an ecological framework .

Method:Twenty in-depth qualitative interviews with spousal carers from two carer support groups and a care home in North West England.

Results: Eight participants were resilient and 12 were not. A resilient carer was characterised as someone who stays positive and actively maintained their relationship and loved one's former self. Resilient carers were knowledgeable and well supported by family but especially friends, with whom they shared this knowledge. They were more actively engaged with services such as respite care.

Conclusion: There is a need to move towards more ecological models of resilience. We propose that access to assets and resources is not always sufficient to facilitate resilience. Implications of these findings are discussed.

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Budgets door ajar for carers

Discusses the benefits of personal budgets for carers, which are a priority for government's new vision for adult care, due next month. A short case study of a couple who benefited from Surrey's carers' personal budget scheme is also included. The scheme gave them the choice to use the money for a joint activity rather than for short break respite care.

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Day care for persons with dementia: an alternative for whom?

Day care, as a type of care in between residential care and home help, has been available for several years, and is often referred to as an adequate alternative form of care for people with dementia. The goals of Swedish day care are to create a meaningful day for participants, offer family caregivers respite, and provide care for persons with dementia. The aim of this Swedish study was to describe day care clients with dementia problems over a 12-month period, and to discuss what distinguished those who discontinued day care from those who stayed with it. Of the clients, 76 percent were diagnosed by a doctor as having dementia between level one and four out of a total of six levels, according to the Berger rating scale of severity of senility. The results showed that one third of the people with dementia discontinued within four months. Another third dropped out within 12 months. People with behavioral problems and those who needed assistance with dressing and toileting discontinued earliest. All caregivers found some benefit of day care for their relatives and for themselves, with the exception of some caregivers of those who ended within four months. Most of the clients who lived alone at the start of day care, and ended within 12 months, went to a nursing home. Two differing conclusions may be drawn from the findings: (1) that offering day care services to persons with dementia who also show signs of behavioral problems is questionable; or (2) that the planning of day care in Sweden should be adjusted to also meet the needs of persons with behavioral problems, such as depression. In its current form, day care in Sweden seems only partially to fulfil its goals.

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'It terrifies me, the thought of the future': listening to the current concerns of informal carers of people with a learning disability

The aim of this article is to report findings from a study that asked carers for their views on a wide range of topics. Issues relevant to the current concerns of carers are reported here. A mixed method triangulated design yielded both quantitative and qualitative data. A total of 647 members of a parent/carer federation were sent a questionnaire with a section on ‘current concerns’. The response rate was 23 percent (151 participants). Two focus groups were held with 15 carers who had completed the questionnaire. Issues of concern to carers included access to health and social care information and services; quality and quantity of respite care; suitable educational provision; independence and quality of life (for a person with learning disability); and what would happen to the person with learning disability when the carer was no longer able to carry out their caring role.

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Access to respite breaks for families who have a relative with intellectual disabilities: a national survey

Aims.  This paper reports the findings of a national study of the variations in the provision and correlates of respite breaks to families.

Background.  Internationally, respite breaks are a major support service to family carers, demand for which often exceeds supply for persons with an intellectual disability. Hence, the length of breaks available to families has to be rationed. Nurses are often involved in such decisions.

Method.  National data on the use of respite breaks by over 4000 families in a full calendar year (2008) were analysed to examine the variation within the Republic of Ireland on two indicators: namely the proportion of carers who had any access to breaks and the median number of days they had received.

Findings.  Striking differences across health service areas were found on both indicators of usage. These were not solely attributable to the availability of provision but also reflected variations in the criteria local services used to allocate places. However, those persons with more severe disabilities were given priority, whereas carer characteristics were not a major influence. Contact with social workers and community nurses also increased the likelihood of carers receiving respite breaks.

Conclusion.  Intra-country comparisons of service delivery should assist planners in creating more equitable access to respite breaks and the development of more explicit eligibility criteria for their use. Nurses are well placed to lead on this.

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Formal support for informal caregivers to older persons with dementia through the course of the disease : an exploratory, cross-sectional study

BACKGROUND: In European countries, knowledge about availability and utilization of support for informal caregivers caring for older persons (≥65 years) with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system for informal caregivers to PwD, a survey of European support systems and professionals involved is needed. The aim of this study was to explore support for informal caregivers to PwD in European countries. We investigated the availability and utilization of support in each of the participating countries, and the professional care providers involved, through the dementia disease.

METHODS: A mapping system was used in 2010-2011 to gather information about estimations of availability, utilization, and professional providers of support to informal caregivers caring for PwD. Data collected was representing each country as a whole.

RESULTS: There was high availability of counselling, caregiver support, and education from the diagnosis to the intermediate stage, with a decrease in the late to end of life stage. Utilization was low, although there was a small increase in the intermediate stage. Day care and respite care were highly available in the diagnosis to the intermediate stage, with a decrease in the late to end of life stage, but both types of care were utilized by few or no caregivers through any of the disease stages. Professionals specialized in dementia (Bachelor to Master's degree) provided counselling and education, whereas caregiver support for informal caregivers and day care, respite care, and respite care at home were provided by professionals with education ranging from upper secondary schooling to a Master's degree.

CONCLUSIONS: Counselling, caregiver support, and education were highly available in European countries from diagnosis to the intermediate stage of the dementia disease, decreasing in the late/end of life stages but were rarely utilized. Countries with care systems based on national guidelines for dementia care seem to be more aware of the importance of professionals specialized in dementia care when providing support to informal caregivers. Mapping the systems of support for informal caregivers of PwD is a valuable tool for evaluating existing systems, internationally, nationally and locally for policy making.

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Providing Informal Care in Terminal Illness: An Analysis of Preferences for Support Using a Discrete Choice Experiment

Background: The trend for terminally ill patients to receive much of their end-of-life care at home necessitates the design of services to facilitate this. Care at home also requires that informal care be provided by family members and friends. This study investigated informal carers’ preferences for support services to aid the development of end-of-life health care services. Methods: This cross-sectional study used 2 discrete choice experiments to ascertain the preferences of carers supporting patients with different levels of care need, determined by the assistance needed with personal care and labeled High Care (HC) and Low Care (LC). The sample included 168 informal carers of people receiving palliative care at home from 2 palliative care services in Sydney, Australia. Data were collected in face-to-face interviews; carers chose between 2 hypothetical plans of support services and their current services. Data were analyzed with generalized multinomial logit models that were used to calculate the impact of each attribute on the probability of a carer choosing a service plan. Results: Preferred support included nursing services; the probability of choosing a plan increased significantly if it included nurse home visits and phone advice (P < 0.001). HC carers also wanted doctor home visits, home respite, and help with personal care (P < 0.05), and LC carers wanted help with household tasks, transport, and a case coordinator (P < 0.001). On average, both groups of carers preferred their current services, but this varied with characteristics of the carer and the caregiving situation. Conclusions:The most valued services are those that support carers in their caregiving role; however, supportive care preferences vary with the different circumstances of patients and carers.

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New Deal for Carers: revision of the Prime Minister's 1999 Strategy on Carers: Health and Social Care Taskforce Report

The Health & Social Care (H&SC) Task Force, the membership of which is set out in annex B, was one of four such task forces established to develop proposals for measures to be included in the new Carers’ Strategy1 . This report comprises proposals developed by the group which were put to the Interdepartmental Group chaired by David Behan, Director-General Social Care, Local Government and Care Partnerships, Department of Health, which oversaw the development of the strategy as a whole. 

The major themes identified by the taskforce as underpinning their work are: − Support for carers to lead a life outside caring − Information − Advocacy − Access to services − Recognition − Diversity − Young Carer issues 

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Prevalence and predictors of carer burden and depression in carers of patients referred to an old age psychiatric service

Background: Too little is currently known about the prevalence of and risk factors for depression and carer strain among informal carers of community-dwelling elderly mentally ill. This study seeks to assess the prevalence of depression, using the Geriatric Depression Scale-15 (GDS-15), the degree of carer burden/strain, and their risk factors among the primary informal carers of patients referred to our community-based old age psychiatry service.

Methods: A cross-sectional study design was used, with the subjects comprising 100 primary informal carers of patients who live at home and were referred to our service. The main carer measures were the GDS-15 and an adapted version of Gilleard's Strain Scale. Patients were assessed the Clifton Assessment Procedure for the Elderly–Survey version, the GDS-15 and the Mini-mental State Examination.

Results: Depression was found in 21% of the carers (a score of 5 or more on the GDS-15). The more problem behaviors identified and the greater the functional impairment of the patient, the higher the strain score deciles and the more likely the carer was to be depressed. Spouses were associated with lower carer strain scores. Patient diagnoses did not affect carer depression or carer strain.

Conclusion: We found high levels of depression in the primary carers of community-dwelling patients attending an old age psychiatric service. The patients' behavior and their cognitive and functional ability conferred greater risk of carer depression or strain than their diagnosis. These risk factors may help identify carers at risk of strain and depression.

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A survey of the perspectives of specialist palliative care providers in the UK of inpatient respite

One of the major reasons for admission of patients to hospital in late stage disease is the inability of carers to continue to provide care at home. Specialist palliative care services have typically admitted patients for acute symptom control, terminal care and respite care to benefit them and their carers. This paper reports the results of a cross-sectional survey of inpatient respite care provision provided by specialist palliative care services and hospices in the UK. A structured questionnaire was mailed to 242 clinical services managers listed in the Hospice Information Directory in 2003. A 69% response rate was achieved. The questionnaire explored the nature of respite services, their purpose, organization, delivery and examined definitions used. The analysis indicated that 80% of the sample provided inpatient respite care. Most inpatient respite admissions were planned, of fixed duration (7–14 days) and were intended to benefit patients and carers. There was some evidence that respite provision was regarded as a lower priority than admissions for symptom control and terminal care, and that patients' needs were prioritized over those of carers. Only 10% of services conducted regular, routine audit, with very few seeking the views of service users. Findings suggest that carers' needs and wishes are not prioritized by specialist palliative care services offering inpatient respite, which may mean that they find it difficult to maintain their caregiving roles over longer disease trajectories or in the face of overwhelming demands.

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Family care-givers: the role of the healthcare assistant

This second article on family care-givers will focus on how healthcare assistants (HCAs) can support such care-givers within a variety of care settings, including GP practices, healthcare centres, hospital departments, hospital wards and in the care-giver's own home. Suggestions for training of HCAs who are likely to work with family care-givers will be proposed.

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A comparative study of stress and unmet needs in carers of South Asian and white adults with learning disabilities

People with learning disabilities have high dependency needs and high prevalence of physical, psychological and social morbidities. Some studies have shown that South Asian and white populations have a similar prevalence of learning disabilities and related psychological morbidity (McGrother et al, 2002), although other studies have shown an increased prevalence of severe levels of learning disabilities in the South Asian population (Emerson et al, 1997). The aim of this study was to compare stress levels and unmet service needs in informal carers of South Asian and white adults with learning disabilities.A sample of 742 informal carers was selected from the Leicestershire Learning Disability Register. Data on carers' and subjects' demographic details, stress levels and unmet service needs were analysed and compared using chi‐square tests and logistic regression analyses. Substantial differences were observed between the two groups. Carers of South Asian adults with learning disabilities reported significantly higher levels of care provision and unmet needs. Major stress was reported in 23% of carers. This was more common in carers with poor health, in those caring for younger adults, carers of adults with psychological symptoms, and in those with an expressed need for moral support or respite care.Stress is common among informal carers of adults with learning disabilities and inequalities, in reported care given and unmet needs, exist between carers of South Asian and white adults. Practitioners need to be aware of factors associated with stress when assessing carers in this population.

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Caregiver Assessment of Support Need, Reaction to Care, and Assessment of Depression

The aims of this study were to: (a) identify New Zealand informal carers' support needs; (b) assess caregivers' depression; and (c) assess positive and negative aspects of caregiving. A sample of 287 carers from throughout New Zealand was recruited by advertisements in carer support organizations literature, in 2008. Data were collected using Centre for Epidemiologic Short Depression scale (CES-D10), Caregivers Reaction Assessment scale (CRA), and open-ended questions. Carer burden was significant (p ≤ .01) in the 60 to 69 age group. The relationship between CRA and CES-D10 in carers in the 50 to 59, 60 to 69 carer age groups; and 0 to 29, 60 to 69, 70 to 79, and 80 plus care recipient age groups were also significant. Mean burden was highest in the 50 to 59 age group (77/120) with depression mean highest in the 30 to 39 age group (14/30). Carers commonly discussed the adverse effects of caregiving on identity, lifestyle, health, and financial situation. Lack of information, poor respite care, and combining work with care were major frustrations. If the government wishes to successfully pursue initiatives allowing people to remain at home, more resources are needed to adequately support carers.

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What a difference three hours can make

Val Bunn and Caroline Baker describe a home-based respite service that carers say has made an enormous difference to their lives, and the lives of those they care for.

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Supporting rural carers : understanding the role of the voluntary sector

Findings from a small scale evaluation of one local voluntary sector carers' organisation in the north of England are used to discuss the commissioning of carers support services in rural areas. The issues raised match closely those identified in the new national strategy for carers both in terms of analysis of need and suggested responses. Respite in order to facilitate 'time out' and personalisation of services through a dedicated support officer emerge as the most important elements of service delivery from the carers' perspective. However, the evidence suggests that current provision is still too limited and that much remains to be done to support carers in their role more effectively. [Abstract]

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Respite care for people with dementia: the range of models for getting a break

Hilary Arksey and Claire Bamford report on the first stage of a two-year national study of respite care and short breaks for people with dementia and their carers

The authors report on the first stage of a two-year national study of respite care and short breaks for people with dementia and their carers, in which they identified the range of service models available in the UK. Models identified included: day care, host family day care, social events, interest and activity groups, home based support (including sitting services), adult placement schemes, specialist respite facilities, respite beds, short breaks and holidays.

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Give me a break! Informal caregiver attitudes towards respite care

Background/objective: Because informal health care is now recognized to be indispensable to health care systems, different forms of respite care have been developed and publicly funded that supposedly alleviate caregivers’ perceived burdens and help prolong the care giving task. Nonetheless, the use of respite care services is low even among substantially strained caregivers. To throw light on this low usage, this paper explores the associations between attitudes towards respite care, characteristics of the care giving situation, and the need and use of respite care.

Method: The survey, administered to a sample of 273 informal caregivers, addressed caregiver, care recipient, and care giving situation characteristics, as well as the familiarity and use of respite care services. It also included a sub-set of 12 statements eliciting attitudes towards respite care from an earlier study [Van Exel NJA, De Graaf G, Brouwer WBF. Care for a break? An investigation of informal caregivers’ attitudes toward respite care using Q-methodology. Health Policy 2007;83(2/3):332–42]. Associations between variables were measured using univariate statistics and multinomial logistic regression.

Results: We found three caregiver attitudes, distributed fairly equally in the sample, that are apparently associated with caregiver educational level, employment status, health and happiness, as well as care recipient gender, duration and intensity of care giving, relationship, co-residence, need for surveillance, and subjective burden and process utility of care giving. However, the relation between attitude and familiarity with and use of respite care services is ambiguous.

Conclusions: Although further exploration is needed of the mix of Q-methodology and survey analysis, the overall results indicate that a considerable portion of the caregiver population needs but does not readily ask for support or respite care. This finding has important policy implications in the context of an ageing population.

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The same as you? Partnership in practice agreements 2004-2007: national overview and next steps

One of the 29 recommendations of the 'The same as you?' review was that local authorities and health boards should draw up Partnership in Practice agreements (PiPs). The aim of this national overview report is to provide feedback on the key messages that emerge from a review of all of the 2004-2007 PiPs, taking account of additional evidence from other sources. Key themes identified are: health promotion and improving access to health, Local Area Coordination, carers, short breaks or respite, autism spectrum disorders, Direct Payments, day services, further education and employment, supported living and vulnerable adults. This report aims to highlight positive developments that can be shared to support improvement across Scotland, and to inform the next round of plans for 2007-2010.

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A stress process model of family caregiver service utilization: factors associated with respite and counseling service use

This study examines whether caregivers' differential utilization of respite and counseling support services is associated with different situational stress processes. A multinomial regression analysis was conducted to compare respite users, counseling users, and those who used neither service, using data collected on a statewide random sample of 1,643 California caregivers providing assistance to individuals aged 50 or older. Compared with caregivers who used neither service, respite service users were more likely to have demanding care situations giving rise to physical symptoms of stress, and were more likely to use community services for the care recipient to augment their care. In contrast, counseling service users were more likely to be managing the meaning of their care situation by seeking out information about services and talking with a confidant about their situation, while coping with both emotional and physical symptoms of stress. Tailoring caregiver interventions to meet the support needs and coping strategies stemming from diverse caregiving situations and caregiver characteristics may increase the likelihood that those interventions will be effective in alleviating or preventing deleterious secondary stress frequently experienced by family caregivers.

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Factors associated with caregiver burden in heart failure family caregivers

Fifty caregivers and 41 heart failure patients participated in a study examining the association of caregiver characteristics and the caregiving environment on caregiver burden. Using a cross-sectional design, caregivers were interviewed face-to-face using a caregiver characteristic/demographic tool designed for this study, the Centers for Epidemiological Studies Short Depression Scale, the Caregiver Reaction Assessment questionnaire, and the New York Heart Association Functional Classification Guide to obtain the caregiver's perception of patient disease severity. Patient medical records were assessed following caregiver interviews for patient demographics, comorbidities, and ejection fraction percentages. Significantly higher levels of burden were found among Caucasian caregivers, those caring for other relatives besides the patient, unemployed caregivers, and single- versus two-family caregivers (respite caregiving). Fifty-one percent of the variance in caregiver burden was accounted for by the variables caregiver advanced age, higher caregiver hours, more caregiver physical health problems, higher levels of caregiver depressive symptoms, and more patient comorbidities. This article concludes with implications for nursing practice and future research.

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Scots pioneers

The Minority Ethnic Carers of Older People Project - Mecopp - provides respite care and advocacy for carers in Scotland. This article looks at how the project has expanded and why the model works.

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Dementia Awareness Campaign

The website of a national campaign to improve public understanding of dementia. The campaign will run throughout March 2010 though TV, radio, press and online advertising feature real-people with dementia. The adverts target 40-60 year olds, and encourage people to find out about the many simple ways to help someone living with dementia. The campaign is part of measures to implement the National Dementia Strategy. The website provides links to help people support someone living with dementia, including advice for caring for someone with dementia;  communicating well with someone with dementia; carers talking about their experiences of caring for someone with dementia. Links to services for carers, including respite care and mental health services are also provided.

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Current and future concerns of older parents of sons and daughters with intellectual disabilities

Increasingly greater numbers of older parents are providing care at home for their sons and daughters with intellectual disabilities. As attention needs to be paid to the supports needed by such families to assist them with their caregiving activities, it is prudent to identify the types of supports that will be needed when the parents are no longer able to provide care. Working with a cohort of older parent carers in Prince Edward Island, Canada, the authors undertook to examine older carer concerns and planning issues. Using both qualitative and quantitative methods to explore the key issues that older parents of sons and daughters with intellectual disabilities are currently facing and their preferences for care in the future, the authors initiated a population-case-finding process, undertook pilot interviews with a sample, and then used the resultant qualitative data to form the quantitative component of the study. Of 132 identified families in the province, 10 parents voluntarily participated in pilot interviews, and 33 parents agreed to complete in-depth interviews. Analysis of qualitative data resulted in the following five themes: (1) worry about the future care of son or daughter; (2) concern about services funding; (3) having housing and care options; (4) lack of provider understanding of carer's needs; and (5) helping son or daughter become a productive and active member of society. Key issues identified through quantitative analysis included interactions with the government, the need for respite care, and meeting social and emotional needs. Preferred types of housing and care options included “small option homes” and services that provide care to both older parents and their sons and daughters. The authors' results emphasize the necessity of adequate supports being made available to older parents who wish to support their sons and daughters with intellectual disabilities at home and to ensure that desired supports are available in the future when they are no longer able to provide care.

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Why do families relinquish care? An investigation of the factors that lead to relinquishment into out-of-home respite care

BACKGROUND: Families/carers relinquishing the care of family members with a disability into the care of out-of-home respite facilities is an under-researched area in the disability field. With this in mind, the aim of this study was to explore the factors that lead to families relinquishing care, the potential early indicators that families are considering relinquishment; the factors that may prevent relinquishment and the outcomes for families/carers after relinquishment occurs. METHOD: Thirty-two client files (of individuals for whom families have relinquished their care in a defined 12-month period) were reviewed for information around their relinquishment into out-of-home respite care facilities for an extended stay. Staff members involved with these families (a total of 17) were also interviewed to provide more information. RESULTS: A thematic analysis of the results found that the factors that led to relinquishment could be categorised into: (1) characteristics inherent to the individual with intellectual disability; (2) characteristics inherent to the family/carer; and (3) characteristics associated with the support context that the carer/family is currently experiencing. It was also found that families'/carers' experienced positive outcomes after relinquishment had occurred; however, feelings of guilt and mourning were initially felt. CONCLUSIONS: Extra supports (e.g. increased respite care, planning for movement of the family member into out-of-home permanent accommodation and case management) and positive interventions such as parent training were highlighted as potential strategies to achieve more lasting benefits from short-stay out-of-home respite care.

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Factors influencing the use and provision of respite care services for older families of people with a severe mental illness

Family carers of people with a severe mental illness play a vital, yet often unrecognized and undervalued role in Australian society. Respite care services can assist these family carers in their role; however, little is known about their access to these services. The paper addresses this knowledge gap. An exploratory field study was conducted throughout the eastern suburbs of Sydney, Australia, to identify and examine the factors influencing the use and provision of respite services for older carers of people with a mental illness. Semistructured, in-depth interviews, and structured self-completed questionnaires were conducted with older family carers, mental health care professionals, and respite care service providers. Additionally, relevant documents (local policies, strategic plans and reports on respite care) were reviewed. It was found that current respite services are problematic for older family carers of Australians with a mental illness, signalling the need for concerted efforts by carers, health professionals, and service providers to improve access. Changes to respite provision and utilization are recommended.

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Review of respite services and short-term breaks for carers of people with dementia

The study aimed to establish the current state of knowledge about the effectiveness and cost- effectiveness of respite services and short breaks for carers for people with dementia. The overall aim encompassed six objectives: • to identify the range of services available for carers, • to examine evidence from national and international published and grey (unpublished) literature about effectiveness and cost -effectiveness of respite services for carers of people with dementia, • to develop existing conceptualisations of ‘effectiveness’ and ‘cost-effectiveness’, • to ensure the views of key stakeholders were central to the literature review, • to identify examples of good practice, • to advise on areas of priority for further research. The report presents the findings from the literature review and consultation with representatives from national statutory and voluntary organisations, and carers.

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Quality of life and burden in caregivers for patients with Parkinson's disease: concepts, assessment and related factors

Caregivers of Parkinson's disease patients face responsibilities stemming from providing assistance to a person, usually a family member, who suffers a progressively disabling disease characterized by both motor and nonmotor symptoms. These circumstances impact on the physical, emotional and psychosocial aspects of the caregivers'lives and, therefore, on their quality of life (QoL). Studies have identified factors related to caregivers'global QoL and health-related QoL, causing caregivers distress and affecting their QoL. These factors are related to patients'and caregivers'characteristics and may be classified as sociodemographic, psychological and disease related. Caregiver's burden refers to the multiplicity of difficulties ensuing as a consequence of caring, including, for example, health problems, modification of habits, economic loss and QoL deterioration. Therefore, burden-related factors are also briefly reviewed. The implementation of effective interventions to preserve the caregiver’s wellbeing and allow the patients to remain at home and be properly assisted is a pragmatic consequence of this knowledge.

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The intersection of employment and care: evidence from a UK case study

Working carers are a key focus of UK policies on health and social care and employment. Complementing national and European evidence, this paper presents a local case study of working carers. It draws on data from a county-wide survey containing a module on caring. Data were primarily categorical and were analysed using SPSS. Three quarters of all carers who responded to the survey were of working age: two thirds were employed and one third had been employed previously. The majority of working carers were mid-life extra-resident women. Over half of cared for relatives were elderly parents/in law; ‘physical illness’ was the primary cause of dependency. A tenth provided intensive care and half reported that caring adversely affected their health. Both were triggers for leaving employment. Two thirds of households received input from services and/or friends/family; being a co-resident carer appeared to mitigate against service allocation. Four issues were identified as pivotal to facilitating employment: access to advice and information, the availability of a matrix of affordable good-quality social-care services, ‘joined up’ needs assessment of the carer and cared for person, and employers identifying carers in their workforce. Europe's ageing profile underscores the study's timeliness.

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Pilot investigation of the effectiveness of respite care for carers of an adult with mental illness

Informal carers of an adult with mental illness have asked that respite care be an integral component of mental health service provision. The present study involved a pilot investigation of the effectiveness of accessing respite care for carers of individuals with a mental illness. It was hypothesised that compared to carers who have not accessed respite care, carers who access respite care would report lower burden and distress, higher life satisfaction and better health after their use of respite care. The study used a respite care group and comparison group of respite care non-users with a pre- and post-respite assessment, and 3-month follow-up design. Participants were 20 carers recruited through carer organisations; 10 carers who accessed respite and 10 carers who had never accessed respite. As expected, the respite care group reported a decrease in burden, but unexpectedly also reported an increase in stress, whereas the comparison group did not change over time. Further research is needed to explore the potential benefits and possible risks associated with different types of respite care using large samples within randomised controlled trials in order to inform respite care policy and service planning.

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Carers Assistive Technology Service

Hull Churches Home from Hospital Service (HCHfH) has been at the forefront of bringing assistive technology into the homes of the elderly with chronic illness’ through Telehealth projects since 2008. Over that period the organisation has had a steep learning curve both in terms of introducing assistive technology to an ageing population and familiarising them with the benefits they go on to experience, building a track record in ensuring assistive technology is used and not rejected, our major work currently involves remote monitoring of clients with cardiac conditions and COPD in the community. HCHfH piloted an assistive technology project in 2013; The Carers Assistive Technology (CATs) project, aimed at supporting the local carers of dementia sufferers through the use of simple technological devices e.g. door charms, memo minders, digital photo albums and PARO the interactive seal cub. Family caregivers of people living with dementia experience a high incidence of psychological distress and physical ill-health associated with caring which can reduce their life expectancy. The dominant causes of carer’s distress include the person living with dementia associated behaviour that challenges, depression, anxiety, risk of falling, social isolation, emotional distress and continual 24 hour support without a break. In 2011 HCHfH carried out a needs analysis, “The needs of informal carers of those living with dementia.” Funded by the Department of Health, involving carers and people living with dementia. The study highlighted that family caregivers would like stimulating support for the person living with dementia and to be given confidence to take time out for themselves. The report indicated this support should be offered to them in their own homes. The pilot aim was to evaluate the use of assistive and ambient technologies in the home of a person with dementia and to measure the effectiveness of the different types of technology available, allowing respite for the carer. Maximising the dementia patient’s ability range within their own home environment, enabling the carer to have a more fulfilling lifestyle, while also facilitating their understanding of the process and evolution of End of Life Care of Dementia and the tools available to assist. By supporting the carers and the patient with their abilities and maintaining their independence in their own home the CATs project aided their understanding of dementia, its stages and the equipment that is available to help with everyday life. It offered both practical and emotional support through a team of highly skilled and suitably qualified staff and volunteers. This programme was particularly relevant as the service was driven by user needs and wishes, rather than a one-size-fits-all deployment mentality. Using assistive technology in the homes of those living with dementia provided an opportunity for the carer to take a break and have a more productive life e.g. access to health care, continue employment and maintain relationships. CATs showed how assistive technology can reduce the anxiety of a person living with dementia, keeping their brain working hard, allowing social interaction and involvement, whilst minimising the feelings of isolation and loneliness.

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Care arrangements for community-dwelling people with dementia in Germany as perceived by informal carers - a cross-sectional pilot survey in a provincial-rural setting

The majority of people with dementia live at home, and informal carers assume the role of key care providers, often supported by formal services. The purpose of this pilot study was to assess home-based care arrangements, to illustrate utilisation of formal services over time and to identify factors associated with perceived stability of the care situation from the informal carer's perspective. A self-administered questionnaire (D-IVA ‘Instrument for Assessing Home-Based Care Arrangements for People with Dementia’) was developed and distributed in a provincial–rural setting in Germany as a cross-sectional survey. Data analysis used descriptive statistics, unbiased conditional inference trees and thematic analysis for open-ended questions. In total, 84 care arrangements were assessed. The majority of participants were direct relatives of the care-dependent person [mostly adult children (48.8%) or spouses (27.4%)]. Formal services were already sought in the first year after onset of memory problems. The most frequently used formal services were home care nursing services (53.0%), day care (49.4%) and respite care (29.6%), whereas 15.5% did not use any type of formal support. Companion home visit, home care nursing service and day care were used over the longest periods of time. The recruitment strategy used in this study may have recruited persons who were relatively more dependent on their informal carers. In this small sample, carers' perceived stability of the care situation was high, and this was associated with the country of origin and sex of the person with dementia (P = 0.004 and 0.023 respectively). Most care arrangements consisted of a mix of informal and formal services. However, informal carers assumed prime responsibility. The questionnaire D-IVA proved to be suitable. It remains a challenge to further examine factors associated with perceived stability and to explain the phenomenon in its whole complexity. Further research using the D-IVA should consider applying complementing quantitative measures as well as qualitative methods.

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Understanding the use of respite services among informal carers

Objective: To examine the use of respite services among carers of non-institutionalised individuals aged 15 and over with either profound or severe disabilities. Methods: Based on data collected from the Australian Survey of Disability, Ageing and Carers in 2003, the investigation evaluated the statistical significance of a number of carer and recipient characteristics on the likelihood of the use of respite services. Further analysis assisted in identifying the support most desired by the majority of carers (88.6%, n=243690) who have never used respite. Results: The results revealed that social and cultural factors played a critical role in the receipt of respite services. Family relationships were important. Just under one-fifth of all primary carers most preferred more financial assistance in their role as caregiver. After controlling for confounding variables it was found that, compared with other forms of assistance, the desire for an improvement in the primary carers? own health was more likely among non-respite users. This may reflect the carers? preference to improve their own capacity to service the recipient rather than rely on others outside the household. Conclusions: Since the recipients under investigation typically possess core communication restrictions and highly individualised needs, it is speculated that carers perceive family members as better able to interpret and meet the sporadic and individualised care demands of recipients. Implications: Given the low usage of respite services among primary informal carers, policy makers and health organisations need to dispel the ?one size fits all? approach to support services for households.

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A telehealth behavioral coaching intervention for neurocognitive disorder family carers

Objectives: This study examined the differential impact of two telehealth programs for women caring for an older adult with a neurocognitive disorder. Outcomes examined were depressive symptoms, upset following disruptive behaviors, anxious and angry mood states, and caregiving self-efficacy.

Methods: Women cohabitating with a family member diagnosed with a neurocognitive disorder were assigned via random allocation to either of the following: (1) a 14-week behavioral intervention using video instructional materials, workbook and telephone coaching in behavioral management, pleasant events scheduling, and relaxation or (2) a basic education guide and telephone support comparison condition. Telephone assessments were conducted by interviewers blind to treatment condition at pre-intervention, post-intervention, and 6 months following intervention.

Results: For those providing in-home care at post-treatment, depressive symptoms, upset following disruptive behaviors, and negative mood states were statistically lower in the behavioral coaching condition than in the basic education and support condition. Reliable change index analyses for Beck Depression Inventory II scores favored the behavioral coaching condition. Caregiving self-efficacy scores for obtaining respite and for managing patient behavioral disturbances were significantly higher in the coaching condition. Effect sizes were moderate but not maintained at the 6-month follow-up.

Conclusions: This study provides some initial evidence for the efficacy of a telehealth behavioral coaching intervention compared with basic education and telephone support. Carers' abilities to maintain strategy use during progressive disorders such as Alzheimer's disease likely require longer intervention contact than provided in the current study. Dementia carers, including those living in rural areas, can benefit from accessible and empirically supported interventions that can be easily disseminated across distances at modest cost. © 2015 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons, Ltd.

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Family caregiver strategies to encourage older relatives with dementia to use social services

Aim: To elicit the strategies used by Japanese family caregivers in the community to encourage older relatives with dementia to use adult daycare and respite stays.

Background: Older adults with dementia often require adult daycare and respite stays for their family caregivers to gain respite from care-giving. However, persons with dementia often face difficulty in new environments and timely access to sufficient services may be difficult to achieve. Few studies have examined how family caregivers encourage their service use.

Design: A qualitative method.

Methods: Semi-structured interviews were conducted with 16 family caregivers who were caring for relatives with dementia at home between 2005–2007. Data were analysed qualitatively.

Results: Family caregivers used various strategies to encourage older relatives to use services, allowing the older adult to decide whether to use the service, yearning and searching for the least harmful service, tailoring the service to the older adult, persuading the older adult to use the service, conforming the older adult to the service and coercing the older adult to use the service. Different strategies were used depending on factors such as desperation in needing respite, willingness to do what is best for the older adult, confidence in taking care of the older adult and the anticipated response of the older adult to services.

Conclusion: Nurses should carefully assess caregivers' strategies in their attempts to encourage service use and should provide adequate assistance in accordance with those strategies.

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A proper break: effective respite services for carers of people with dementia

Dementia is a diagnosed condition which is estimated to affect more than 750,000 people in the UK, and the numbers affected are increasing (AS, 2004). The majority of older people with dementia are cared for at home by a relative or friend. Caring for people with dementia is known to be physically and emotionally exhausting. Respite care aims to relieve carers of caring responsibilities in the short term, and offer a positive experience for the person being cared for. Despite the potential range of service models, carers and cared for often feel they have little choice in what is available. Since the Carers Special Grant was introduced in 1999, as part of the National Strategy for Carers (DH, 1999a), funds have been made available to local authorities to enhance services so that carers can take a break from caring. What, then, is known about what makes for effective and cost-effective service provision in this area? And how can policy-makers, managers and practitioners use this knowledge to deliver improved respite services for carers of people with dementia? This paper summarises a review of research evidence and consultations on this topic (Arksey et al., 2004).

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Caring for a person with dementia: Exploring relationships between perceived burden, depression, coping and well‐being

This study was concerned with identifying the impact of variables such as gender, length of time caring, coping style, depression and perception of caregiving burden on the physical and psychological well‐being of carers of persons with dementia. Forty‐two carers aged between 21 and 88years from Blue Care's Homecare Dementia Service and Cairns Aged Care Health Service participated in the study. A cross‐sectional survey research design was used, with participants providing information on the Satisfaction with Life Scale, the Center for Epidemiologic Studies Depression Scale, the COPE, Short Form (SF)‐12 and the Zarit Caregiver Burden Scale. Perceived burden accounted for 41.7% of the variance in satisfaction with life as a subjective measure of well‐being. There were no significant differences between male and female carers. Satisfaction with life was not found to decrease with length of time caring for the dementia sufferer. There were no significant findings in regard to coping style or physical health of carers. The well-being of carers can be enhanced through strategies which lead to a reduced perception of burden, with respite services providing tangible relief from burden.

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Satisfaction with respite care: a pilot study

Satisfaction with respite care may be bound up with a variety of factors. The interaction of social support with ratings of a carer's satisfaction with respite care has not been explored in published work. The present authors postulated that social support, both during caring and during periods of relief from caring whilst in receipt of respite care, would be associated with greater satisfaction with respite care. They embarked upon a pilot study of carers who were looking after dependants with dementia, a particularly demanding form of care. Previously validated scales were used for determining levels of social support, and for assessing possible confounding factors such as carer depression or strain. One hundred and forty carers were contacted, but only 26 completed the questionnaires. In terms of perceived benefit to the carer, satisfaction was high (rating scale = 1–7, mean = 5.8, mode = 7) and correlated significantly with the numbers of people in the social support network (r = 0.57, P = 0.002), albeit not with any of the four measured types of support which they may have provided. Carer satisfaction was not significantly correlated with carer strain nor depression scores. Regression analysis demonstrated that 17% of the variance in this satisfaction score was accounted for by the numbers in the social support network. Other factors did not significantly explain the observed variation.

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Dementia care costs and outcomes: a systematic review

Objective: We reviewed evidence on the cost-effectiveness of prevention, care and treatment strategies in relation to dementia.

Methods: We performed a systematic review of available literature on economic evaluations of dementia care, searching key databases and websites in medicine, social care and economics. Literature reviews were privileged, and other study designs were included only to fill gaps in the evidence base. Narrative analysis was used to synthesise the results.

Results: We identified 56 literature reviews and 29 single studies offering economic evidence on dementia care. There is more cost-effectiveness evidence on pharmacological therapies than other interventions. Acetylcholinesterase inhibitors for mild-to-moderate disease and memantine for moderate-to-severe disease were found to be cost-effective. Regarding non-pharmacological treatments, cognitive stimulation therapy, tailored activity programme and occupational therapy were found to be more cost-effective than usual care. There was some evidence to suggest that respite care in day settings and psychosocial interventions for carers could be cost-effective. Coordinated care management and personal budgets held by carers have also demonstrated cost-effectiveness in some studies.

Conclusion: Five barriers to achieving better value for money in dementia care were identified: the scarcity and low methodological quality of available studies, the difficulty of generalising from available evidence, the narrowness of cost measures, a reluctance to implement evidence and the poor coordination of health and social care provision and financing. Copyright © 2012 John Wiley & Sons, Ltd.

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Strategies for the relief of burden in advanced dementia care-giving

Aim.  This paper is a report of a study conducted to uncover the strategies that women caregivers of relatives with advanced dementia use to rest from care-giving.

Background.  Respite consists of activities and situations that briefly take caregivers away from their care-giving responsibilities. Qualitative studies are focusing on respite as an outcome and are deepening our knowledge about the experience of caregivers’ rest. The strategies that caregivers use to relieve the burden, however, are not fully known.

Method.  A qualitative approach was used influenced by the work of Charmaz’s constructivist grounded theory. Twenty-three female primary caregivers of relatives with advanced dementia participated in semi-structured interviews between November 2006 and March 2009 in Spain. Data collection was guided by the emergent analysis and ceased when no more relevant variations in the categories were found.

Findings.  Taking leave from the life of care-giving is the general strategy that caregivers use to rest from their caregivers selves. The key issue is to be able to connect with a different world from that of care-giving. Three strategies that participants use to leave the life of care-giving follow: (1) Connecting with one’s own life, (2) building moments of life in common with the sick relative and (3) keeping in touch with care-giving.

Conclusion.  To have respite from care-giving implies distancing oneself from the care-giving identity and reveals the caregiver’s need for alternative selves to have true breaks from caring. Nurses are in a unique situation to foster respite as an inner experience.

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Respite care and short breaks: what works and at what cost?

It is important to find out which services benefit people with dementia and their carers most: in particular whether carers gain more support from respite care and short breaks or from other services. Hilary Arksey and Helen Weatherly review the research evidence to date and comment on its limitations, given the wide range of different services covered.

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Assessing the applicability of GIS in a health and social care setting: planning services for informal carers in East Sussex, England

Informal carers save the state's health and social care services billions of pounds each year. The stresses associated with caring have given rise to a number of short-term care services to provide respite to carers. The Carers (Recognition & Services) Act of 1995 identified formally for the first time, the important role that unpaid carers provide across the community in Britain. The planning of combined health and social care services such as short-term care is a less developed application of geographical information systems (GIS) and this paper examines awareness and application issues associated with the potential use of GIS to manage short-term care service planning for informal carers in East Sussex. The assessment of GIS awareness was carried out by using a semi-structured questionnaire approach and interviewing key local managers and planners across a number of agencies. GIS data was gathered from the agencies and developed within a GIS to build up a set of spatial databases of available services, location of users and additional geo-demographic and topographic information. The output from this system development was presented in turn at workshops with agencies associated with short-term care planning as well as users to help assess their perspectives on the potential use and value of GIS. A renewed emphasis on a planned approach to health care coupled with integrated/joint working with social care creates a need for new approaches to planning. The feedback from planners and users, suggested that a number of key data elements attached to data-sharing may prove to be simultaneously progressive yet problematic, especially in the areas of ethics, confidentiality and informed consent. A critical response to the suitability of GIS as a tool to aid joint health and social care approaches is incorporated within a final summary.

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The impact of caring for adults with intellectual disability on the quality of life of parents

Background Because of an increase in life expectancy and de-institutionalisation, many adults with intellectual disability (ID) live with and are cared for by their parents throughout their adult lives. Because of caring demands, the quality of life (QOL) of parents may be affected. The study explored the impact of caring for an adult with ID on the QOL of parents. Methods Participants were 12 parents who were the full-time carers of an adult with ID. Participants were interviewed about the effect of caring on their QOL. Interviews were analysed thematically. Results Caring had a positive impact on QOL by enabling participants to develop relationships and receive support, participate in leisure activities, achieve a sense of personal satisfaction and enable a more positive appraisal of their lives. Caring had a negative impact on participants' QOL by restricting their relationships, leisure activities and employment opportunities. Caring was also associated with financial insecurity, frustrations at the service system and fear of what the future held for their offspring. Conclusions  Caring for an adult with ID had both positive and negative effects on parents' QOL. Improving services and service delivery, including the provision of residential services and respite, would address many of the issues that were reported to have a negative impact on parents' QOL.

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Needs of carers of severely disabled people: are they identified and met adequately?

Objective: To examine the unmet needs of informal carers of community dwelling disabled people and to compare their perspectives to those of disabled people and nominated professionals. It was hypothesised that a poor recognition of carers’ needs could have implications for carers’ well- being and thus their ability to maintain their caring role. Need was defined as a service or a resource that would confer a health or rehabilitation gain.

Design: Face to face interviews with carers and disabled participants, telephone interviews with professionals (Southern England). Disabled participants had been selected randomly from two disability registers.

Main outcome measures: The Southampton Needs Assessment Questionnaire (carers version), SF-36 (carers’ health status).

Results: Carers experienced similar health status to people in the general population. The most frequently carer-reported unmet needs were for short breaks, domestic help and respite care. Carers who had reported unmet need for short breaks had significantly poorer levels of mental health and vitality (SF-36) than carers who had not reported this. Similar numbers of unmet carers’ needs were reported by disabled participants, professionals and carers themselves. In terms of type of unmet needs, poor concordance between carers and disabled participants occurred in 52% of cases: carers reported more unmet needs than disabled participants for short breaks and domestic help. Poor concordance scores between carers and professionals occurred in 59% of cases: carers reported more unmet needs for short breaks than professionals and professionals reported more unmet needs for formal respite care.

Conclusion: In line with recent legislation, carers’ needs must be independently addressed and services, especially for flexible community support such as short break services, must be developed specifically to meet the needs of carers. Further research is warranted to evaluate whether recent legislation for carers has any effect on carers’ well-being and ability to cope with their caring role.

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Mixed blessings: long-term care benefits in Germany

This chapter opens with the movement to long-term care benefits in Germany in 1994 with a two-tiered system of employment-related, contribution-based long-term care insurance (LTCI) and a last resort of tax-funded social assistance. The goals were to reduce the financial burden on the states and municipalities, lessen poverty for care clients, increase long-term care services, expand home- and community-based services and support informal caring, and to prevent or delay institutionalisation. The chapter looks at the methods in which the benefit design in the German system affects employment, and examines the social long-term care insurance scheme. A main characteristic is the choice of cash benefits and benefits in-kind, distinguishing the German LTCI from the long-term care systems in most other countries. The mixed-benefit design of the system considers the institutional framework, funding, beneficiaries and eligibility criteria, the benefits and the special features of the German system, which are an [...]

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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. Seventy-six 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.

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Time to care

Cairdeas is operated by Penumbra Respite Care, a major Scottish mental health charity, and offers residential respite care as planned breaks for people with a wide range of mental ill health. It gives them short supported breaks away from their home environment to help them over difficult times and to give carers a break. The service is like a guest house, but has skilled staff working on a 24-hour basis and provides social outings like going to the cinema. Yet, despite having only 8 beds and being able to offer 400 respite weeks a year for the whole of Scotland, Cairdeas is often under-used by local authorities, despite an apparent desperate need among carers of adults with mental health problems. The project director, Be Morris, argues that this is because respite is still seen as an add-on extra, that mental health carers are often hidden, and that these carers are missing out on assessments of their need. Statistics have shown that 40% of carers in Scotland have not had an overnight break in the last 2 years.

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Improving services and support for people with dementia: sixth report of session 2007-08: report, together with formal minutes, oral and written evidence

Dementia is a term for a range of progressive, terminal organic brain diseases. Dementia affects over 560,000 people in England and costs some £14 billion a year. Parallels can be drawn between attitudes towards dementia now and cancer in the 1950s, when there were few treatments and patients were commonly not told the diagnosis for fear of distress. There are also stigmas associated with mental health and older people's issues, which present barriers to improving awareness, understanding and openness about dementia. Despite its significant human and financial impact, the Department has not given dementia the same priority status as cancer and coronary heart disease. As a result the NHS has not afforded dementia the same focus for improvement. Large numbers of people do not receive a formal diagnosis for a variety of reasons including GPs' lack of knowledge and/or confidence to make a diagnosis, fear of dementia, and a perception amongst the public and professionals that little can be done to help people with dementia.

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Little-Known Program Offers Help To People Caring for Aging Relatives

Offers details about a little-known federal program aimed at helping individuals who provide long-term care for aged relatives or loved ones called the National Family Caregiver Support Program. Budget appropriated to the program, which offers respite care, training in home-care skills, and counseling and referrals to help caregivers navigate the bureaucracy of the United States long-term-care system; Inadequacy of the program in terms of funding and services offered; Number of caregivers the program expects to be servicing with the next couple of years, according to the Administration on Aging, the governmental agency that administers the program; Where individuals can get more information about the program.

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How do we facilitate carers' involvement in decision making?

Background. Government health care policy urges service providers to involve service users in the decision-making process. Research studies have recommended changes to current health care practice to facilitate this involvement. However, carers’ organizations continue to highlight a gap between policy and practice in relation to involvement.

Aim. The aim of the study reported on in this paper was to investigate involvement in a specific health care context with a view to identifying both opportunities for change and practical, realistic ways of bringing about that change. This was a qualitative case study using a case study design. The field site selected was a respite and assessment (23 bedded) ward within the Psychiatric Unit of a hospital specializing in the care of older people. Informal carers (n=20) and members of the multidisciplinary team (n=29) were interviewed about their views and experiences. The interviews were audiorecorded and transcribed. Family meetings, multidisciplinary team meetings and ward routines were the focus of non-participant observation. Field notes from these observations, together with the interview data were analysed using constant comparative method.

Results and Conclusions. The reported experiences of carers in this study highlighted four markers of satisfactory involvement: feeling that information is shared; feeling included in decision making; feeling that there is someone you can contact when you need to; and feeling that the service is responsive to your needs. The majority of carers felt dissatisfied with the level of involvement. The situation we found echoed that found in other studies, i.e. the majority of informal carers (henceforth ‘carers’) interviewed were dissatisfied with the level of their involvement. However, our investigation, in which the views of health care professionals as well as those of carers were sought, provided invaluable insight into why this might be the case. Two main sources of difficulty were found: hospital systems and processes, and the relationship between nursing staff and carers. The argument made is that practitioners themselves must notice and challenge these barriers if carer involvement is to be facilitated.

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Expectations to and evaluation of a palliative home-care team as seen by patients and carers

OBJECTIVES: Although the number of palliative home-care teams is increasing, knowledge of what patients and principal informal carers expect from a home-care team is sparse. We aimed to elucidate this as well as evaluate a home-care team.

PATIENTS AND METHODS: Individual semi-structured interviews with nine patients and six carers before receiving home care and 2-4 weeks after. In total, 26 interviews were conducted. Interviews were analysed with Template Analysis. Peer debriefing was performed.

MAIN RESULTS: Patients and carers expected the team members to have specialised knowledge in palliative care and to improve their sense of security being at home. They also expected respite for carers and activities for patients. They evaluated the team positively but missed respite for carers and 24-h on-call service.

CONCLUSIONS: Patients and carers found the home-care team essential to their sense of security being at home. Primary health care professionals must receive any necessary training outside patients' homes. Offering respite for carers and 24-h on-call service would be an improvement.

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The hospice caregiver support project: providing support to reduce caregiver stress

Introduction: The vast majority (80%) of care provided to hospice patients is given by informal and unpaid caregivers, who are often family members. They may be responsible for everything from management of the household and finances to medical and personal care. Providing this kind of care to a loved one at the end of life can contribute to increased stress, health problems, and decreased quality of life.

Methods: Hospice social workers referred caregivers identified as needing additional support into a special project that funded services not covered by hospice and that the family could not afford to purchase. There were no restrictions on the types of services that could be requested. The Pearlin role overload measure (ROM) was administered and the family selected a service provider from an approved list of agencies. Upon completion of the service period, the ROM was re-administered. Use of the hospice respite benefit by any hospice patient during this study was compared with use before the project began.

Results: Self-reported caregiver stress, as measured by the Pearlin ROM pre- and post-services, decreased by 52% (t122 = 10.254; p < 0.0001). Use of the hospice respite benefit requested by any hospice patient caregiver decreased during the project period (χ2, p < 0.02), and when respite was requested fewer days were used as compared with the same time period prior to the project (χ2, p < 0.0043).

Conclusion: The project results show that offering such services relieved caregiver stress, reduced use of respite, and reduced the number of respite days used.

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Breaking the mould: developing a new service for people with dementia and their carers

Respite care or ‘short breaks’ are currently heavily promoted as services to support older people and their carers. However, uptake of such services can be limited and there is a need to design models which are more flexible and responsive, and also reflect the ethos of personcentred care, which is currently one of the main drivers of health and social care policy in the UK. This paper describes the rationale for, and the philosophy behind, a new service for people with dementia and their carers recently established in Sheffield which provides respite care in the person's own home. The importance of user and carer involvement is highlighted and the need for new approaches to evaluation stressed.

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Support for family carers for an elderly person at home: a systematic literature review

Family carers are a major source of help and assistance to the persons they provide care for. They are also major contributors to the welfare system, balancing the national health care expenditure. Increasing attention, in research as well as government policy, is being paid to their role as informal caregivers. Support to family carers seems to be a new ‘buzzword’ in Swedish Government policy. However, supporting family carers may prove to be a more complex endeavour than one initially might be led to believe. Support could here be understood as any services, assistances, education, information, attitudes, and lay or professional person's provision for the benefit of the family carer. The aim of this systematic review was to identify modes of, and scientific evidence on, support for family carers of cohabiting elderly persons. The method followed a seven-step model: a focused research question was formulated creating a base for deriving search words and inclusion and exclusion criteria for studies. Systematic database searches identified several studies some of which were retrieved, critically appraised and classified by two independent reviewers. A total of 26 articles were finally included, revealing that family carers fear social isolation and wish to network in groups with peers, either for social or for learning needs purposes. Family carers also desire respite care. However, it is unclear whether they actually benefit from any of the above or how service provision should be attempted.

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Shifting the balance of power? Short breaks for carers in Wolverhampton

Reports on a project in Wolverhampton which reviewed short break (respite care) services for carers and the projects progress so far. The project focused on carers of people in the age range of 18-65, where provision of short breaks was seen to be most in need of development. The project used action research methods and included involvement of a number of carer support groups. Accounts from 50 carers on their short break experiences and aspirations were also collected.

The legitimacy of rest: conditions for the relief of burden in advanced dementia care-giving

This paper is a report of a study conducted to identify the conditions that favour the relief of the burden of female caregivers of relatives with advanced dementia. Respite services are a response to caregivers' needs for rest. Although they are wanted and needed services, caregivers do not always have access to or use them. The need for a caregiver-centred approach to relieving the burden of care is a conclusion which respite researchers are increasingly reaching. The method was, grounded theory was chosen as the research strategy. Twenty-two female primary caregivers of relatives with advanced dementia participated in semi-structured interviews between November 2006 and May 2008 in Spain. Data collection was guided by the emergent analysis and ceased when no more relevant variations in the categories were found. The findings were, while having a rest is legislated as a right in civil and religious laws in family care in Spain, it should meet certain conditions that in the caregiver's eyes legitimate it. In the present study these were: (i) when there is no abandonment, (ii) when others are not harmed, (iii) when having a rest is obligatory and (iv) when having a rest is acknowledged. Conclusion. Many caregivers experience ambivalence over accepting respite. Nurses should assess caregivers’ situations and promote context-specific interventions and a relief of burden free from guilt. Exploration of the conditions that favour the relief of burden within other cultural and caregiver groups is recommended.

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Burden of Alzheimer's disease: population-based estimates and projections for New Zealand, 2006-2031

OBJECTIVE: To estimate the burden of Alzheimer's disease (AD, including 'mixed' dementia) in New Zealand in 2006, and project this burden out to 2031. METHOD: An incidence to prevalence methodology was utilized, the foundation of which is a discrete time Markov model allowing for multiple stages of disease (early vs late). Population estimates and projections, and all-cause mortality rates, were obtained from Statistics New Zealand. In the absence of usable New Zealand data, data on disease incidence and progression were obtained from systematic reviews of the international (mainly European, Australian and North American) literature. Projection scenarios included a demographic scenario in which change resulted only from increases in population size and ageing; a prevention scenario in which incidence rates were reduced by 25% from 2011; a treatment scenario in which disease progression rates were likewise reduced by 25% from 2011; and a combined scenario capturing both interventions. RESULTS: The model estimated that approximately 28000 people are currently living with AD (whether formally diagnosed or not), approximately 55% in the early and 45% in the late stage of the disease; approximately 6600 people newly develop AD each year; and approximately 2300 people die from (as opposed to with) this condition. The model projected that the prevalence of AD will increase approximately 2.5-fold (to approx. 70000 people) by 2031, if demographic drivers are unopposed. Plausible improvements in prevention and treatment, however, acting together, could reduce this growth by up to 50%, so that the prevalence of AD only doubles. CONCLUSION: Even this more optimistic projection has profound implications for the funding and provision of dementia care services, as well as for patients, their families, informal carers and the psychogeriatric workforce. New service configurations and models of care will be necessary. Access, quality and coordination standards for home care, day care, respite care, residential care and specialist services (including memory clinics) will need to respond accordingly.

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Correlates of stress in carers

BACKGROUND: Mental health services are required to take account of the needs of carers, yet little is known about how services affect carers.

AIMS: This paper explores the relationship between the user's mental health problems, the services received and the impact of caring on carers.

METHODS: Sixty-four carers were interviewed, measuring their experiences of care-giving, carer stress and the service user's level of impairment. A robust, composite measure of user severity was derived.

RESULTS: Carers were sometimes better judges than care co-ordinators of user impairment. Their experience reflected the independently rated severity of service users' problems. When carers were aware of care plans, they felt less negative about caring. Even in above-average mental health services, carers lacked information about: care plans, medication and complaints procedures.

CONCLUSIONS: This evidence can be used in allocating resources such respite care, family therapy and CBT to carers. These findings have implications for how mental health services might improve their provision for carers, for instance, involvement in care planning may help carers to cope.

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Support for family carers of children and young people with developmental disabilities and challenging behaviour: what stops it being helpful?

Background  Many family carers find the support they receive in respect of their child's challenging behaviour unhelpful. This study sought to identify carer perceptions of the ways in which support is unhelpful and how it could be more helpful.

Methods  Thirteen mothers, caring for a child with intellectual disability and challenging behaviour, were interviewed. Parental perceptions and concerns regarding support received were investigated. Transcribed interviews were analysed using interpretive phenomenological analysis.

Results  Parents reported problems with generic disability services including accessing good services, obtaining relevant information, working relationships with professionals and issues with respite provision. Concerns were also expressed about challenging behaviour-specific provision including ineffective strategies being suggested, an apparent lack of expertise, insufficient input and their child's exclusion from services.

Conclusions  More preventative approaches, more widespread adoption of effective behaviour management and improved partnership between professionals and families appear needed. Increasing family support may be ineffective if not accompanied by greater insight into the factors related to effectiveness and recognition of the role of informal support.

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Mapping support policies for informal carers across the European Union

Background: At a time when health and social care services in European countries are under pressure to contain or cut costs, informal carers are relied upon as the main providers of long-term care. However, still little is known about the availability of direct and indirect support for informal carers across the European Union.

Methods: Primary data collection in all EU member states was supplemented with an extensive review of the available literature.

Results: Various forms and levels of support have been implemented across Europe to facilitate the role of informal caregivers. Financial support is the most common type of support provided, followed by respite care and training. Most countries do not have a process in place to systematically identify informal carers and to assess their needs. Policies are often at an early stage of development and the breadth of support varies significantly across the EU.

Conclusions: Policy developments are uneven across the member states, with some countries having mechanisms in place to assess the needs and support informal carers while others are only starting to take an interest in developing support services. Given the unprecedented challenges posed by population ageing, further research and better data are needed to capture and monitor information on informal carers, to help design adequate support policies and eventually to evaluate their impact across the EU.

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National Care Standards: short breaks and respite care services for adults

Outlines the national care standards for short breaks and respite care services for adults in Scotland. Contents: before using the service, standards one to six; day to day life, standards seven to eighteen; going home or moving on, standard nineteen.

Respite in palliative care: a review and discussion of the literature

Family caregivers, who are patientsflrelatives and friends (hereafter called carers), play a significant and arguably most important role in enabling patients to make choices about their place of care during advanced disease and in the terminal phase. Relatively little attention has been directed towards identifying the needs of carers who find themselves in this position and what interventions (if any) might best support them in continuing to provide care to the patient during the illness and dying trajectory. What evidence there is suggests that while some aspects of caring are looked on positively, carers also experience challenges in maintaining their physical and psychological health and their social and financial wellbeing. One common recommendation is that respite facilities be provided. The purpose of this paper is to consider the definitions and assumptions that underpin the term ’respitefland its impact on the physical, psychological and social outcomes of carers in palliative care contexts. We conducted a review of the literature, which involved searching five electronic databases: Web of Science, Medline, CINHAHL, Cochrane Database System Review and Social Sciences Citation Index. The search identified 260 papers, of which 28 related directly to adult respite care in specialist palliative care. These papers were largely concerned with descriptive accounts of respite programmes, guidance on referral criteria to respite services or were evaluating the effects of respite on the patient rather than the impact on the carer. We did not identify any empirical studies assessing the effects of respite provided by specialist palliative care services on carer outcomes. There is insufficient evidence to draw conclusions about the efficacy of offering respite care to support carers of patients with advanced disease. We, therefore, draw on the wider literature on carers of adults with chronic disease to consider the impact of respite services and offer suggestions for further research.

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The experience of family carers attending a joint reminiscence group with people with dementia: a thematic analysis

Reminiscence therapy has the potential to improve quality of life for people with dementia. In recent years reminiscence groups have extended to include family members, but carers’ experience of attending joint sessions is undocumented. This qualitative study explored the experience of 18 family carers attending ‘Remembering Yesterday Caring Today’ groups. Semi-structured interviews were transcribed and subjected to thematic analysis. Five themes were identified: experiencing carer support; shared experience; expectations (met and unmet), carer perspectives of the person with dementia’s experience; and learning and comparing. Family carers’ experiences varied, with some experiencing the intervention as entirely positive whereas others had more mixed feelings. Negative aspects included the lack of respite from their relative, the lack of emphasis on their own needs, and experiencing additional stress and guilt through not being able to implement newly acquired skills. These findings may explain the failure of a recent trial of joint reminiscence groups to replicate previous findings of positive benefit. More targeted research within subgroups of carers is required to justify the continued use of joint reminiscence groups in dementia care.

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Breaking point: a report on caring without a break for children and adults with severe or profound learning disabilities

Mencap’s 2003 Breaking Point report identified the appalling situation faced by the majority of families caring for children and adults with severe and profound learning disabilities. Despite highlighting the issues with central and local government at every opportunity, Mencap continues to meet families pushed to breaking point. We have revisited the issues in this report, as we have come across many more stories of families who are still not getting the short break they need. We can confirm that, sadly, nothing has really changed. From May to July 2006 we followed up our work with a survey of 353 families in six local authority areas in England1 and throughout Northern Ireland to find out about the short breaks they get and need. This report tells the shocking stories of families still being denied the right to a family life due to a continuing lack of short breaks. Families are still left to reach breaking point, experience ill health and lead diminished lives as short break services are not being provided to help them care for their sons and daughters. 

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The impact of organisational culture on the delivery of person-centred care in services providing respite care and short breaks for people with dementia

Ensuring the development and delivery of person-centred care in services providing respite care and short breaks for people with dementia and their carers has a number of challenges for health and social service providers. This article explores the role of organisational culture in barriers and facilitators to person-centred dementia care. As part of a mixed-methods study of respite care and short breaks for people with dementia and their carers, 49 telephone semi-structured interviews, two focus groups (N= 16) and five face-to-face in-depth interviews involving front-line staff and operational and strategic managers were completed in 2006-2007. Qualitative thematic analysis of transcripts identified five themes on aspects of organisational culture that are perceived to influence person-centred care: understandings of person-centred care, attitudes to service development, service priorities, valuing staff and solution-focused approaches. Views of person-centred care expressed by participants, although generally positive, highlight a range of understandings about person-centred care. Some organisations describe their service as being person-centred without the necessary cultural shift to make this a reality. Participants highlighted resource constraints and the knowledge, attitudes and personal qualities of staff as a barrier to implementing person-centred care. Leadership style, the way that managers' support and value staff and the management of risk were considered important influences. Person-centred dementia care is strongly advocated by professional opinion leaders and is prescribed in policy documents. This analysis suggests that person-centred dementia care is not strongly embedded in the organisational cultures of all local providers of respite-care and short-break services. Provider organisations should be encouraged further to develop a shared culture at all levels of the organisation to ensure person-centred dementia care.

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Assessing multiple sclerosis patients' and carers' views of respite care

Background: People with multiple sclerosis (MS) often require full-time care, which may be provided by informal carers. Respite becomes a vital part of carers' lives allowing temporary relief. Little attention in the literature is given to the people who experience respite care. Aim: The aim of this study was to assess the views of respite care by MS patients and their carers. Method: A cross sectional survey was conducted in Northern Ireland, one questionnaire for patients and another for carers. The lists of two long stay respite units provided the sample for the study, from these 96 patients and 96 carers were approached. A total of 70 patients (73%) and 28 carers (29%) responded. Results: Seventy-one percent of patients used respite care to give their carers a break; 64% of carers used respite to relieve stress. More than half, 64% of patients, enjoyed respite; 6% were angry about requiring respite; 57% of carers felt guilty about using respite. Overall, 81% of patients were satisfied with respite. Almost all carers (96%) stated that respite allowed them to continue caring. Conclusions: Both patients and carers felt respite was a positive and necessary form of care. The study did highlight that activities or outings for patients in respite would be welcomed.

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'Time and space': carers' views about respite care

The needs of carers have become more visible since the Carers Recognition & Service Act (1995). Although the demand for respite care is apparent it has proven much harder to establish its precise benefits using quantitative analysis. Some studies have shown no benefit at all to carers and the only clear benefit to emerge from more elaborate randomized controlled trials is a modest reduction in caregiver distress. Quantitative instruments may miss some of the benefits. We embarked on a qualitative study to determine what carers themselves said about the benefits or otherwise of respite care. Twenty-three carers were interviewed about their experiences of respite care and qualitative themes were derived from the transcripts of these semi-structured interviews. Caring was conceptualized in terms of costs (physical exhaustion, feelings of despair, lack of recognition and financial losses) and benefits (a sense of closeness to the dependant and enhanced self-esteem). Respite care emerged as a service that offered 'normality' and 'freedom' to the carer. Conversely, it was also perceived in critical terms if there was any shortfall between the quality of professional care compared to their own informal care. However high the quality of respite care, there was the uncomfortable realization by many that this care might be viewed as a signal to the patient, the family and the local community that they were no longer able to cope. Respite care was perceived as a service which, on balance, facilitated informal care and enabled care to continue at home for longer than would otherwise have been possible. The particular component of this service that was most valued was the option of a home-sitting service.

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Mainstream in-patient mental health care for people with intellectual disabilities: service user, carer and provider experiences

Background  Government guidelines promote the use of mainstream mental health services for people with intellectual disabilities whenever possible. However, little is known about the experiences of people with intellectual disabilities who use such services.

Materials and Methods  Face-to-face interviews with service users, carers and community nurses were completed and analysed on a case by case basis using interpretative phenomenological analysis. The results were followed up in focus groups with service providers.

Results  Positive aspects included the provision of respite, particularly for carers, and good basic care. These were outweighed by a perception of the admission as disempowering and lacking in flexible treatment provision. Accessing help emerged as a major problem, as well as the prospect of staff neglecting the specific needs of people with intellectual disabilities.

Conclusions  While there were some indications of improvements in line with recent policies and guidance, mainstream services seem a long way off realizing aims of easy accessibility, person-centred practices and active partnership with intellectual disability services.

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Shifting the burden

Proposals for councils to register adult placement schemes will come as a relief to individual carers who will be spared the regulatory load. Anabel Unity Sale looks at why change is necessary and asks whether it will improve practice. [Introduction]

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Give me a break

The carers grant has been doubled and its long-term future secured as part of a new spending programme on adult care. But even now less than five per cent of carers will get the breaks from caring that they deserve, says Katie Leason. 

Examines some issues related to the grant given by the government to caregivers in the U.S. Aim of the grant; Expansion of the carers grant program; Benefits of the grant to caregivers; Limitations of the grant program.

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A systematic review of the effectiveness and cost-effectiveness of different models of community-based respite care for frail older people and their carers

To review the evidence for different models of community-based respite care for frail older people and their carers, where the participant group included older people with frailty, disability, cancer or dementia. Where data permitted, subgroups of carers and care recipients, for whom respite care is particularly effective or cost-effective, were to be identified.

Major databases were searched from 1980 to March 2005. Ongoing and recently completed research databases were searched in July 2005. Data from relevant studies were extracted and quality assessed. The possible effects of study quality on the effectiveness data and review findings were discussed. Where sufficient clinically and statistically similar data were available, data were pooled using appropriate statistical techniques.

Twenty-two primary studies were included. Most of the evidence came from North America, with a minority of effectiveness and economic studies based in the UK. Types of service studied included day care, host family, in-home, institutional and video respite. Effectiveness evidence suggests that the consequences of respite upon carers and care recipients are generally small, with better controlled studies finding modest benefits only for certain subgroups. However, many studies report high levels of carer satisfaction. No reliable evidence was found that respite can delay entry to residential care or that respite adversely affects care recipients. Randomisation validity in the included randomised studies was sometimes unclear. Studies reported many different outcome measures, and all of the quasi-experimental and uncontrolled studies had methodological weaknesses. The descriptions of the studies did not provide sufficient detail of the methods of data collection or analysis, and the studies failed to describe adequately the groups of study participants. In some studies, only evidence to support respite care services was presented, rather than a balanced view of the services. Only five economic evaluations of respite care services were found, all of which compared day care with usual care and only one study was undertaken in the UK. Day care tended to be associated with higher costs and either similar or a slight increase in benefits, relative to usual care. The economic evaluations were based on two randomised and three quasi-experimental studies, all of which were included in the effectiveness analysis. The majority of studies assessed health and social service use and cost, but inadequate reporting limits the potential for exploring applicability to the UK setting. No study included generic health-related quality of life measures, making cost-effectiveness comparisons with other healthcare programmes difficult. One study used sensitivity analysis to explore the robustness of the findings.

The literature review provides some evidence that respite for carers of frail elderly people may have a small positive effect upon carers in terms of burden and mental or physical health. Carers were generally very satisfied with respite. No reliable evidence was found that respite either benefits or adversely affects care recipients, or that it delays entry to residential care. Economic evidence suggests that day care is at least as costly as usual care. Pilot studies are needed to inform full-scale studies of respite in the UK.

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Better care at home and in care homes: contract inserts

People with dementia and their carers need a range of services, some of which will be dementia- specific and others which will be more mainstream in nature, but which may deliver services to large numbers of people affected by dementia. In some instances, these mainstream services may not respond well to the specific needs of people living with dementia and the purpose of this document is to provide a statement of requirements to meet those needs. The document sets out a number of ‘contract inserts’ which describe the specific requirements of people with dementia and their carers when using mainstream services and may be used by commissioners when drawing up their own statements of requirements for discussions for service redesign or in a procurement situation. They may be included in a subsequent contractual arrangement with a Provider. The document also sets out a number of dementia-specific quality standards which commissioners may use to measure the quality of services provided to people with dementia and their carers. At the end of the document, information is provided on documents and practical tools which may be of assistance to commissioners in developing a dementia-friendly community.

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Rest assured? A study of unpaid carers’ experiences of short breaks

This report describes the findings of research carried out between August and December 2011 into the experiences of unpaid carers in accessing and using short breaks (respite care). The study explored, from the carers’ perspective the benefits of short breaks (provided by formal services and family and friends), good practice in planning and provision, deficits and areas for improvement. Research findings are based on 1210 responses to a Scotland-wide survey distributed through carer organisations, four focus groups involving 36 carers and 13 interviews.

Key findings from the study: • Over half of the survey respondents felt that caring had negatively affected their interests and hobbies and their mental wellbeing. Over 40% reported that caring had negatively affected their family life, friends, finances, physical wellbeing and career. Similar findings emerged from the interviews and focus groups. However, a third of respondents said that caring had a positive impact on their hobbies, family life, physical wellbeing and friendships. • Short breaks were considered fundamental to carers to help alleviate the physical and emotional demands of caring and to sustain the caring relationship, preventing admission to residential care. • Over half (57%) of survey respondents had not taken a break from caring. Sixty-three percent of black and minority ethnic (BME) carers had not had a break from caring. • Those who had taken a break were most likely to be satisfied with the quality of the break, the choice, support to organise it and the length. Respondents were most likely to be dissatisfied about the frequency of breaks. • Over half of respondents (56%) noted that the level of their breaks had stayed the same over the last two years. Twenty-five percent of respondents noted that the frequency of their breaks had decreased. Those most likely to report a decrease were providing care to a parent. Twenty percent of respondents said that the level of their breaks had increased over the last two years. • Forty-three percent of those who had not had a short break identified that this was because they did not know how to access short breaks. • Other barriers to participants taking breaks from caring included: | Difficulty with the planning process | A lack of appropriate and personalised provision | Guilt | Uncertainty about eligibility

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Health status and work burden of Alzheimer patients' informal caregivers : comparisons of five different care programs in the European Union

BACKGROUND: In 1998, a research study was conducted to compare existing programs in the European Union providing both care to people with senile dementia of the Alzheimer type, and support to their informal caregiver. METHOD: Five programs were selected in seven centres. Home social services (Denmark), Day centres (Germany), Expert Centres (Belgium, Spain), Group Living/Cantou (Sweden, France), Respite hospitalization (France). In each centre, 50 patients were randomly selected. The questionnaire addressed informal caregivers (or referents). It included the Nottingham Health Profile (NHP), the Zarit Scale, and it collected data on age, sex and position (spouse or child) of the informal caregiver, as well as age, level of mental deterioration and disabilities of the patient. RESULTS: (n=322 subjects) Comparatively with caregivers of Respite hospitalization patients chosen as the reference, caregivers of patients cared by Group living/Cantou and Home social services experienced a significantly lower burden. The benefit from the Expert centre program concerned emotional reactions (depression) (odds ratio=0.32; P=0.02) and work burden (Zarit) (OR=0.32; P=0.04). The main benefit for caregivers who received Day centre help was the important reduction of feelings of social isolation (OR=0.13; P=0.0003). CONCLUSIONS: The Group Living/Cantou program appeared as the most efficient way to reduce informal caregiver burden, independently from the country considered.

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The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly : a systematic review

INTRODUCTION: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly. METHODS: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in September 2010. RESULTS: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability. CONCLUSION: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.

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Guidance on short breaks (CCD 4/2008)

This paper is about short breaks or respite care. It is written by the Scottish Government and COSLA, an organisation that speaks for all the local authorities in Scotland. This paper has been written to help people in Community Care Partnerships to make their short break service better for carers and the people they care for. This is an easy-read report, produced by ENABLE Scotland’s Accessible Information Unit.

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'Do I stay or do I go?'-job change and labor market exit intentions of employees providing informal care to older adults

This article examines whether providing informal eldercare to an older dependent person predicts employees' intentions to change jobs or exit the labor market and, if so, which particular aspects of both caregiving (e.g. time demands, physical/cognitive care burden) and their current work environment shape these intentions. We used data from a sample of 471 caring and 431 noncaring employees in Austria and split the analyses by gender. We found different aspects of informal caregiving to be associated with the intention to change jobs and with the anticipated labor market withdrawal of male and female workers. A time-based conflict between informal eldercare and paid work was significantly and positively related to the intended job change of female workers but not of their male counterparts. Flexible work arrangements were found to facilitate the attachment of female workers to their jobs and the labor market. Intentions to exit the labor market of male workers appeared to be triggered by a physical care burden rather than time demands. Copyright © 2012 John Wiley & Sons, Ltd.

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Authorities fail to deliver on respite promise

In early 1999 the government announced money was to be spent on giving carers respite breaks. Reports on how the money, despite coming through to local authorities, has not reached the carers themselves.

Night respite care: relieving the burden on people caring for relatives with dementia

There are few published reports of night-time respite care for people with dementia. The authors review the literature on effectiveness of respite care and report on an audit of the Bexley ACE Night Centre. Night-time respite care is well received by carers who say that it helps them cope better and for longer with relatives who have dementia. Many carers say they would be willing to pay for the service if it were not free. They argue that models of very brief night-time respite should be developed further and researched more fully as they meet an important need of carers. 

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Respite: carers' experiences and perceptions of respite at home

Background: Informal carers play an important role in supporting people with long-term conditions living at home. However, the caring role is known to have adverse effects on carers such as poorer emotional health and social isolation. A variety of types of respite may be offered to carers but little is known about the benefits of respite, carers’ experiences with it, or their perceptions of care workers. This study therefore investigated these experiences and perceptions.

Method: Recorded, semi-structured interviews were undertaken with twelve carers receiving weekly four-hourly respite. Carers were either caring for a person over sixty or were over sixty themselves. Interviews were analysed thematically.

Results and Discussion: Respite sometimes alleviated carers’ constant sense of responsibility for their cared for. Trust, whether in the service provider or individual care workers, was essential. Carers lacking this trust tended to perceive respite as less beneficial. Low expectations were common with carers often unwilling to find fault. Care workers were frequently seen as very kind with some carers valuing their company. Care workers who were flexible, communicated well and responded to the cared for’s needs were valued. Stimulation of the cared for during respite was very important to most carers but the perceived benefits for carers were often very individual. Many carers used respite to catch up with routine, domestic tasks, rarely using it to socialise.

Conclusions: For many carers, respite was a way of maintaining normality in often difficult, restricted lives. Respite allowed continuation of what most people take for granted. Carers frequently viewed respite as intended to improve their cared for’s quality of life, rather than their own. This centrality of the cared for means that carers can only really benefit from respite if the cared for is happy and also seen to benefit. Future research should investigate the perspectives of carers and their cared for, focussing on different demographic groups by features such as age, gender, ethnicity and diagnostic groups. However, without greater clarity about what respite is intended to achieve, clear evidence of a positive impact of this intervention may remain difficult to identify.

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Needs, barriers and facilitators experienced by spouses of people with aphasia

Purpose. Little is known about how spouses cope with their needs as a result of their partner's aphasia. This study described spouses' needs and identified the barriers and facilitators to satisfying them.

Methods. Four associations of people with aphasia were approached. Eleven spouses were interviewed in small groups. They described the results of their inquiries and efforts to satisfy their needs because their partner had aphasia (mean time since onset 6 years 8 months) as a result of stroke or surgery. Discussions were transcribed and coded. Excerpts were grouped into categories.

Results. Spouses mainly needed support and respite, and perceived their partner to need help for communication and well-being. Personal factors like the availability of close others to provide help were facilitating. However, participants encountered barriers, mainly organisational, i.e. the help needed did not exist. Some needs persisted over time.

Conclusions. Results confirm the long-term needs of spouses in adjusting to the aphasia of their partner, as well as the limited services available to them. Many of the needs reflected spouses' concerns about their partner, while others were a consequence of their caregiving role as well as the unavailability of support. Spouses of people with aphasia should have access to support during and after rehabilitation.

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A review of the factors associated with the non-use of respite services by carers of people with dementia: implications for policy and practice

The use of respite services by carers has been shown to extend the length of time people with dementia can remain living in the community with family support. However, the use of respite services by informal carers of people with dementia is often low and does not appear to match carer need. To better understand how to address carers' unmet need for respite, the factors that impede respite service use must be identified. To achieve this, a narrative synthesis of published academic literature (1990–2011) was undertaken regarding factors associated with not utilising different types of respite services utilising Anderson's Behavioural Model of Service Use. The review reinforces the importance of the assessment and matching of services to the needs of individual carers and care recipients at the local level. It also highlights the need to move beyond care pathways for individuals. To support respite use there is a need for local action to be augmented at a community or population level by strategies to address attitudinal and resource barriers that influence sub-groups of the carer population who may be more vulnerable to service non-use.

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Current perceptions of respite care: experiences of family and informal carers of people with a learning disability

Access to regular, high-quality respite care has a beneficial impact on a carer’s ability to fulfil their caring role, but provision varies widely. The current study aims to report family and informal carers’ perceptions of respite care services offered to them by their local authority. A mixed method, triangulated design, yielded both quantitative and qualitative data. Members of a parent/carer federation were sent a questionnaire which included a section on ‘respite care’; 151 of 647 responded. Two focus groups were held with 15 carers who had previously completed the questionnaire. The majority of carers reported that their respite needs were not being met. Unmet needs were hampered by the lack of information regarding criteria for access to respite. Discrepancies were evident between professionals and carers on a shared definition of respite care. Carers were unsure of exactly which activities constituted respite care and for whom the service was being provided.

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Informal carers of older family members: how they manage and what support they receive from respite care

Aims.  To describe informal carers’ coping strategies and their experiences of the support provided by respite care.

Background.  The target set in the Finnish national old age policy strategy is that 90% of the population over 75 should be able to live at home. A major source of support for older people and their families is respite care in an institution.

Design.  Survey.  Methods.  The data were collected among informal carers who regularly use respite care services (n = 143). Two structured questionnaires were used: the Carers’ Assessment of Managing Index (Nolan et al. 1995) and an index developed by the researchers.

Results.  Informal carers who provided care for younger individuals or people who needed less help had a better quality of life. Spouse carers and older informal carers were less satisfied with their quality of life than younger carers. Periods of respite care had a major influence on informal carers’ quality of life: 93% said they felt invigorated. Care periods remained rather isolated episodes in the lives of the older patients in that there was hardly any discussion at the institution about the family’s situation, the objectives of respite care, or about how the informal carer was coping. Altogether, 47% of the nurses remained fairly distant. The most useful coping strategies involved creating alternative perspectives in the caring relationship.

Conclusions.  The results strengthen the knowledge base of informal caregiving by showing how caregivers cope and what kind of support they need in their demanding caring role.

Relevance to clinical practice.  Respite care nurses should invest greater effort in supporting informal carers. The service should be developed as an integral part of home care for older people. Nurses and informal carers should see each other as partners who share a common goal, i.e. the well-being of the entire family.

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Carers in the community: the nature, extent and needs of informal care provision within the Western Health Board

Many individuals provide care for people who would otherwise require core from health professionals. The need for 'informal carers' to support health services is likely to increase due to changing socio-demographic trends. However, little is known about the nature and extent of informal core and the needs of carers and those receiving care. The objectives of the study were to assess the psychosocial impact of coring and being cared for, determine the extent of care giving and assess needs and current levels of support.A representative sample of 531 households across Galway, Mayo and Roscommon was selected. Interviewers administered up to three surveys, depending on household composition (carers, those receiving care, non-carers). Eighteen per cent of the population were defined as corers. This equates to more than 19,000 corers throughout the region. The majority of those receiving care were older people. Many carers devoted all their time to their caring role and were on-call 24 hours a day to help the person [...]

Carer break or carer-blind? Policies for informal carers in the UK

This article examines three policy statements on informal carers published in the UK in 1999—the National Strategy for Carers, the report of the Royal Commission on Long Term Care and the note of dissent by two members of the Royal Commission. These three documents contain two rather different approaches to policy for carers. On the one hand, the National Strategy and note of dissent emphasize respite care or short-term breaks for carers, and are concerned with sustaining the well-being of carers as well as ensuring the continuation of caring itself. The Royal Commission, on the other hand, emphasizes support for the older or disabled person who is being cared for, as a means of supporting the carer, and advocates “carer-blind” services. It is argued that this policy contains within it the potential to substitute for or replace the carer and that this represents a radical new departure for social policy for carers in the UK. The advantages and disadvantages of the two policy approaches are explored. It is argued that policies for carers should include both services specifically for carers, like breaks from caring, and services provided for the cared-for person, like domestic and personal care services. Wider issues about the proper boundary between family and state care are explored.

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Using the Senses Framework to achieve relationship-centred dementia care services

This article describes the development of a new service for people with dementia and their carers in a large post-industrial city in the north of England, UK. The service arose in response to the perceived inadequacies of existing respite care provision and has proved very successful in meeting the needs of people with dementia and their family carers, and in providing high levels of job satisfaction for staff. The success of the initiative can be understood using the Senses Framework and relationship-centred care as an analytic lens to identify key attributes of the service. The article also discusses implications for the development of support services more generally.

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Effect of caring for an older person on women's lifetime participation in work

This paper examines the relationship between informal care and ending paid work for working women of three age groups (up to 30, 31–49 and 50 or more years) in 1995 in Belgium. It explores the effect of being a carer for older adults on the probability of ceasing to work. Most particularly, it focuses on the effect of the care intensity in the different age groups. The analyses use data from the European Community Household Panel (ECHP). A sample of 24,592 working women living in 11 European countries was followed from 1995 to 2001. Multivariate analyses for the entire sample show that the simple fact of caring or not did not influence the probability of ceasing work, but that providing light care had a negative effect, suggesting the presence of a respite effect. As for the effects specific to each age group, caring did not have any effect for women aged 31 to 49 years, but for the other two age groups, women who provided light care were less likely to cease work than those not caring for an older person. In contrast, providing heavy care increased the probability of ceasing work, but only for those aged 50 or more years. The findings suggest that studies of and policies related to informal care and its consequences should give more attention to age group differences.

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Who cares for the carers? The district nurse perspective

Background. Community care of elderly and disabled people is increasing. Primary care teams are expected to provide support to the informal carers essential for its success.

Objective. To explore district nurse (DN) views about roles of the primary care team and what is needed for support of informal carers.

Method. A qualitative analysis of open-ended questions contained in a larger postal questionnaire.

Results. DNs viewed improved respite care, general support and information provision as priorities for supporting carers, and lack of resources and access as the main reasons why they could not be more active. They thought other team members might be better placed to take that role. GPs were seen as key members of the primary care team providing services, actively identifying carers and co-ordinating other services and team members.

Conclusion. DNs identified several areas of support for carers that could be improved: respite, information provision and general support services. They did not feel able to be pro-active in support of informal carers themselves and viewed the GP in that role as a central co-ordinator of care and services.

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Carers' perspectives on their needs and local authority occupational therapy practice

Unpaid family carers are the main providers of care for older people in the community. Local authority occupational therapists are required by law to assess the needs of such carers in their work, targeting their interventions to support carers' roles. This small qualitative study identified the perceived needs of nine family carers of adults with physical disabilities in one English county, exploring the extent to which these needs were met by local authority occupational therapists.

Data were collected from semi-structured qualitative interviews with nine family carers. These interviews were transcribed verbatim and analysed using elements of grounded theory methodology. Six varied categories of carers' needs emerged.

Occupational therapists met the participants' needs for practical assistance and information, but not for respite or financial assistance. Regarding support network issues, the participants reported poorly integrated community services and little initial awareness of occupational therapy. Once seen by an occupational therapist, however, they wished to remain ‘on file’ to gain instant access to a valued source of support. The recommendations made include the generation of family carer targeted occupational therapy information resources, ongoing therapist liaison to raise general practitioners' familiarity with local service provision and additional research.

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Development of a holistic approach to assisting families with an Alzheimer's sufferer

This article canvases the diagnosis and treatment of Alzheimer's disease (AD), and proposes a holistic support regime for patients, carers and families.  The development of services for Alzheimer's patients and their families in the Nelson Mandela Metropole since 1991 is outlined.  Based on the expressed needs of families of AD sufferers specific support systems were identified, fund raising undertaken and projects initiated to offer respite to those in need of assistance.  The article offers insights into the nature and treatment of AD and how, based on a query from a single family, a system of services can be developed for a community off a small resource base.

Estimating service demand for respite care among informal carers of people with psychological disabilities in Australia

Objective: To estimate service demand (willingness to seek or use services) for respite care among informal, primary carers of people with a psychological disability and to describe their characteristics. Methods: Analysis of data from the household component of the 2009 Survey of Disability Ageing and Carers (n=64,213 persons). Results: In Australia in 2009, 1.0% of people aged 15 years or over (177,900 persons) provided informal, primary care to a co-resident with a psychological disability. One-quarter (27.2%) of these carers reported service demand for respite care, of whom one-third had used respite services in the past three months and four-fifths had an unmet need for any or more respite care. A significantly greater percentages of carers with service demand for respite care spent 40 or more hours per week on caregiving, provided care to a person with profound activity restrictions and reported unmet support needs, compared to carers without service demand. Lack of suitable, available respite care models was a barrier to utilisation. Conclusions: Findings confirm significant service demand for, and under-utilisation of, respite care among mental health carers. Implications: Increased coverage of respite services, more flexible service delivery models matched to carers’ needs and better integration with other support services are indicated. 

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Systematic review of respite care in the frail elderly

Objectives: To assess the effectiveness and cost-effectiveness of breaks in care in improving the well-being of informal carers of frail and disabled older people living in the community and to identify carer needs and barriers to uptake of respite services.

Data sources: Major electronic databases were searched from the earliest possible date to April 2008.

Review methods: Selected studies were assessed and subjected to extraction of numerical data for meta-analysis of quantitative studies and extraction of text for thematic analysis of qualitative studies. Quality of the studies was assessed using checklists specifically designed for the current review.

Results: In total, 104 papers were identified for inclusion in the quantitative synthesis, 16 of which were appropriate for meta-analysis. Carer burden was reduced at 2-6 months' follow-up in single-sample studies but not in randomised controlled trials (RCTs) and quasi-experimental studies. Depression was reduced in RCTs in the short term and for home care but not for day care. These effects, however, were not significant in random-effects models. There was a trend for longer interventions to have more positive effects than shorter interventions. There was no effect of respite on anxiety, but it had positive effects on morale and anger and hostility. Single-group studies suggested that quality of life was worse after respite use. There were increased rates of institutionalisation after respite use; however, this does not establish a causal relationship as it may be a result of respite being provided late in the caregiving career. A total of 70 papers were identified for inclusion in the qualitative synthesis. Uptake of respite care was influenced by: carer attitudes to caring and respite provision; the caregiving relationship; knowledge of, and availability of, services; the acceptability to, and impact of respite care on, care recipients; hassles resulting from the use of respite care; quality of respite care; and the appropriateness and flexibility of service provision. Carers expressed needs for active information provision about services, support offered early in the caregiving career, access to a variety of services with flexible provision, reliable transport services, continuity of care, good-quality care, appropriate environments, care that provides benefits for care recipients (socialisation and stimulation), and appropriate activities for care recipients' levels of abilities and interests.

Conclusions: There was some evidence to support respite having a positive effect on carers but the evidence was limited and weak. It is difficult, therefore, to make recommendations as to the most appropriate form of delivery of respite, apart from the suggestion that a range of services is probably most appropriate, to provide flexibility of respite provision and responsiveness to carer and care recipient characteristics and needs and also changes in those needs over time. There is a need for further high-quality larger trials that include economic evaluations.

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The unmet support needs of family members caring for a suicidal person

Background: The prevention of suicide is a key aim for health care authorities and society in general and family members have a principal role in caring for suicidal people. However, the support needs of these essential family carers are relatively unknown. Aim: To explore the support needs of family members of suicidal people. Method: Eighteen participants were interviewed using a short topic guide. Transcripts were analysed using thematic analysis and confirmed by discussion. Findings: Family members of suicidal people have unmet needs (this was the main theme). Four sub-themes emerged: having practical support, respite and advice; feeling acknowledged and included; having someone to turn-to; and consistency of support. Conclusions: Family members are perceived to have an important role in suicide prevention; however some carers experience a lack of support which impinges on their ability to undertake this role. Family members need be included in care and require support from healthcare staff.

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Stress in carers of individuals with demtenia and Community Mental Health Teams: an uncontrolled evaluation study

Aim.  The aim of this was to evaluate the effectiveness of interventions provided by a Community Mental Health Team (CMHT) in reducing stress in carers of individuals with dementia.

Background.  The CMHT had been created to working specifically with older people with mental health problems and their carers. Following initial multidisciplinary assessment a range of interventions were provided to both clients and carers according to assessed need. There is an established need for mental health services to focus on the need of carers and the study attempts to see if the interventions provided were useful in reducing carer stress.

Method.  The study used a time series design over a 2-year period on all referrals to the CMHT. All carers of individuals with dementia or clearly identified memory problems were invited to participate and a total of 26 carers consented and participated in all stages of data collection. Data were collected on initial assessment, as well as 3 and 6 months following the initial assessment using the Caregiver Strain Index (CSI). A questionnaire was also administered which collected basic demographic information and details of symptoms demonstrated by the carer's relatives.

Results.  On initial assessment the mean CSI score for the overall sample was 9·23. The mean CSI reading at 3 months (6·63) and 6 months period (4·12) demonstrated statistically highly significant reductions in carer stress (P = 0·000). A linear stepwise regression analysis of the impact of the different interventions on reductions in the CSI scores showed a statistically significant relationship between respite care and reduction in carer stress (B = 1·705, t = 2·586, P = 0·017).

Conclusion.  The results add support to the role of multidisciplinary community based services for individuals with dementia, offering a range of interventions to both clients and their carers, in reducing carer stress. The authors also argue for the routine use of the CSI in such teams as means of monitoring the well-being of carers as well as evaluating the effectiveness of service delivery.

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Activities enjoyed by patients with dementia together with their spouses and psychological morbidity in carers

Caring for a spouse with dementia is stressful and respite care is sometimes used to reduce this burden. Spouses may find some aspects of caring rewarding but the literature on positive aspects of caring is limited. To describe activities enjoyed by patients with dementia together with their spouses, and examine their relationship with psychological morbidity in carers. A convenience sample of 46 patients with mild to moderate dementia (91% with Alzheimer's disease, AD) and their spouses were interviewed at home. Spouses completed the Pleasant Events Schedule (PES-AD) to identify activities enjoyed by patients and spouses on their own and together. Psychological morbidity in spouses was assessed using the General Health Questionnaire (GHQ-12). Cognitive functions, and non-cognitive symptoms were also assessed in patients. Multiple regression analysis using age, Mini-Mental State Examination, Cornell Scale for Depression in Dementia, Revised Memory and Behaviour Problems (RMBP) checklist frequency, and PES-AD- together scores as independent variables found PES-AD-together and RMBP-frequency to be independent predictors of GHQ-12 scores in spouses, but the model could explain only 28% of variance. Facilitating activities that are enjoyed by both patients with dementia and spouses may be an alternative intervention strategy to reduce carer burden.

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The need for support services for family carers of people with motor neurone disease (MND): views of current and former family caregivers a qualitative study

Purpose: Family carers provide the majority of home-based care for people with motor neurone disease (MND). Carers’ need for, and use of, support services are not fully understood; this study aimed to explore, from a qualitative perspective, the views of current and former family carers of people with MND.

Methods: A qualitative study was undertaken in Northwest England, using narrative interviews with current (18) and former (10) carers of a family member with MND. An optional longitudinal element involving diary completion was offered to the current carers. Data were analyzed using a thematic framework approach.

Results: Carer’s needs vary, but encompass the provision of information and training, availability of respite care, counselling, and access to trained paid-for carers.

Conclusions: There is need for a range of support services to be made available from which carers can select those most appropriate for them. Some support services are not always available for carers of this client group. There is a need for carers to access greater manual handling and training for physical care. Without sufficient support, carer burden can be overwhelming which may impact on the place of care of the patient and ultimately has implications for health and social care services.

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A place for support: new policies for informal carers in long-term programmes

Reviews policy trends for informal carers which have been implemented in various countries between 1996 - 1998. The article focuses on respite care and direct payments for carers of older ill and disabled adults.

An exploration looking at the impact of domiciliary and day hospital delivery of stroke rehabilitation on informal carers

Objectives: To explore the impact of two methods of post-hospital stroke rehabilitation on both carers' perceptions of the health services offered and their quality of life.

Setting: East Dorset Health Authority.

Subjects: Forty-six informal carers were recruited from a sample of 106, initially identified from stroke patients participating in a larger randomized controlled trial.

Design: Qualitative methods.

Methods: Semi-structured interviews were used at baseline and six months to explore carers' perception of a good therapy, the advantages and disadvantages of the different services and their fulfilment with the services. In-depth thematic analysis was carried out to explore the impact of the two different methods of service delivery on carers' quality of life.

Results: Day hospitals provided carers with respite opportunities, whilst domiciliary stroke teams provided carers with better educational opportunities to be involved in therapy. No qualitative difference was found in the impact that the different services had on carers' quality of life, which were influenced by factors such as the degree of disruption that caring had on their lives, the loss of a shared life and the availability of social support. Ultimately, carers saw the services as providing benefit for survivors and not themselves.

Conclusions: Domiciliary stroke teams provided informal stroke carers with skills that could help improve postdischarge stroke rehabilitation amongst stroke survivors. Informal carers also benefited from the respite elements of day hospital. A mixed model using both domiciliary care and day hospital care, could provide carers with the benefits of education, convenience and respite.

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Respite care for caregivers and people with severe mental illness: literature review

Aim.  The aim of this study was to review research literature over the past 10 years on respite care for people affected by severe mental illness; and identify key implications for nursing practice in provision of respite care for family caregivers of people with severe mental illness.

Background.  Family caregivers play an important role in health care, but need regular breaks to maintain their own health and well-being. Respite care is one of the few services available with a primary focus on supporting family caregivers. In most developed countries the notion of respite care as an extension of the health care service has been embraced, evidenced by a growing body of literature in health and health-related disciplines.

Methods.  An initial literature search was undertaken using the key words ‘respite’, ‘short-term care’, ‘shared care’ and ‘day care’ in major electronic databases for nursing, psychiatry, psychology and sociology literature between 1967 and 2002, identifying 704 articles. Closer examination of the literature from 1993 to 2002 on gaps and trends in respite care for people affected by severe mental illness was conducted. This is discussed in the context of the broader literature, particularly on dementia, where the mainstream research on respite care is found.

Results.  The majority of family caregiving studies identified a need for greater quality, quantity, variety and flexibility in respite provision, and the literature has remained largely silent in relation to those affected by severe mental illness. There are contradictory findings on outcomes of respite care services and a lack of controlled empirical studies and evaluative research on effectiveness.

Conclusions.  Respite care is beneficial for caregivers, there is significant unmet need in provision of services for the mentally ill, and greater flexibility and the needs of caregivers should be recognised and addressed.

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Short and sweet

Respite breaks can play an important role in reducing the stress on carers and giving them time to re-energise themselves. Philippa Hare looks at recent research that highlights the secret of a good break. 

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Why carers of people with dementia do not utilise out-of-home respite services

While many people with dementia require institutional care, having a co-resident carer improves the likelihood that people can live at home. Although caregiving can have positive aspects, carers still report a high need for respite. Despite this need, the use of respite services for carers of people with dementia is often low. This article investigates carer beliefs regarding out-of-home respite services and why some carers do not utilise them. A total of 152/294 (51.7%) carers of community-dwelling people with dementia (NSW, Australia) who were sent a survey completed it (November 2009–January 2010). Despite reporting unmet need for both services, 44.2% of those surveyed were not utilising day respite and 60.2% were not utilising residential respite programmes. Binary logistic regression models were used to examine factors associated with non-use using the Theory of Planned Behaviour within an expanded Andersen Behavioural Model on a final sample of 113 (due to missing data). The model explained 66.9% of the variation for day centres, and 42% for residential respite services. Beliefs that service use would result in negative outcomes for the care recipient were strongly associated with non-use of both day care [OR 13.11; 95% CI (3.75, 45.89)] and residential respite care [OR 6.13; 95% CI (2.02, 18.70)] and were more strongly associated with service non-use than other predisposing, impeding and need variables. For some carers who used services despite negative outcome beliefs, the benefits of respite service use may also be diminished. To improve use of out-of-home respite services in this vulnerable group, service beliefs should be addressed through service development and promotion that emphasises benefits for both carer and care recipients. Future research utilising behavioural service models may also be improved via the inclusion of service beliefs in the study of health and social service use.

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Consultation on respite care guidance

This draft guidance will update and replace guidance issued in 1996. The main purpose of the consultation is to help local service planners improve respite provision in line with the overall principles of enabling self care and working with carers as partners in care by improving respite planning, shifting the balance towards preventative support, and personalising support to improve outcomes both for carers and those with care needs. This guidance provides advice to adult Community Care Partnerships and to agencies engaged in children’s services on the planning and delivery of respite care.

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Helping dementia patients with a wider family circle

Shared Lives schemes are increasingly being used to support people with dementia and they are providing cheaper than alternative forms of help, reports Natlie Valios. 

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Challenging professional roles: lay carers' involvement in health care in the community

The bulk of care in the community is carried out by lay carers. Recent policy initiatives to support them in the United Kingdom are outlined. There remains evidence of significant gaps in support from professional health and social-care workers including community nurses. This paper reports three studies of lay carers: those caring for older people, carers of technology-dependent children, and home-care workers involved in the “direct payments” scheme. Findings are reported in the areas of decisions about appropriate caring roles, the lay–professional boundary, training and respite opportunities and the expertise of lay carers. Recommendations for policy and practices are made.

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An integrated approach for individualised support : carers’ views

Purpose – The purpose of this paper was to capture carers’ views of a service in Bristol funded jointly by the Local Authority and the NHS Clinical Commissioning Group, which offers support to carers in the form of a one-off payment which they can use for anything they choose. 

Design/methodology/approach – A multi-method evaluation of this integrated service was conducted between August 2012 and October 2013 to explore its impact on carers’ health and well-being. This paper presents findings from 40 interviews conducted with carers as part of the evaluation. 

Findings – Many carers have little respite from very stressful situations; the break enabled them to focus on their own needs. Carers’ needs included actual short breaks away with or without those being cared for, as well as items like household equipment or exercise classes. 

Research limitations/implications – The study was centred on an innovation and integrated approach to support carers in one city and provides a snap-shot of the short-term effects. Longer lasting effects are not known.

Social implications – Most carers found the support beneficial, and in some cases reported a positive effect on their own health and well-being. Effective inter-agency communication and collaboration is essential for the success of the integrated service. 

Originality/value – There is limited research available on the outcomes of integrated approaches to support carers.

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An exploration of family carers' experience of respite services in one specialist palliative care unit

Background: Changing patterns of care for terminally ill people mean that 90% of patients in the UK now spend the majority of their last year of life at home. It is now widely accepted that supporting individuals to die at home relies heavily on the availability of family carers to provide the majority of the care needed. However, one of the most common reasons for unplanned admissions near the end of life is carers’ inability to provide continuing care. One strategy to overcome these challenges has been to offer planned respite care. Despite recent studies, in reality little is known about respite services for patients with life limiting illness, in particular how respite is experienced by the caregivers or to what extent respite services address their needs. Methods: This prospective study, comprising mixed methods of data collection, explored the experiences of 25 family carers whose relative had been admitted to the local hospice for inpatient respite care. Semi-structured interviews were conducted at two time points: pre- and post-respite. The Relative Stress Scale Inventory was administered at both interviews. Results:Just over half of the sample were caring for a relative with a diagnosis of cancer (n = 13); the majority of the others had a number of neurological conditions (n = 12). The data demonstrate that managing care for relatives with a life limiting illness was perceived to be hard work, both physically and mentally. Inpatient respite care was considered important as it enabled family carers to have a break from the ongoing care-giving responsibilities, as well as being an opportunity to experience ‘normal life’ independently. The majority of family carers felt that their expectations of respite for themselves had been achieved. The respite service was well evaluated in relation to: standard of nursing care; alternative facilities on offer, atmosphere; and other care homes. Discussion: Currently, inpatient respite services are provided to two patient groups - those in the last year of life and those with a chronic life limiting illness. However, on closer analysis, the current model of service delivery, a two-week inpatient stay, may not be best suited to those caring for a relative in the last year of life. Similarly, it might be questioned whether an inpatient hospice is the most suitable setting for those patients needing supportive care, rather than specialist palliative care. The study has raised many issues that need to be considered in the support of carers caring for relatives with a life limiting illness with uncertain trajectories.

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Burden of informal carers of mentally infirm eldery in Lancashire

OBJECTIVES: To compare the burden of supporting demented and non-demented mentally infirm elders in an English community; determine the prevalence of emotional distress in carers and to investigate the relationship between carer well being and duration of care giving.

DESIGN: Cross-sectional study of informal carers of the elderly referred to a psychogeriatric service, using a questionnaire investigating carer socio-demography, carer-dependant interpersonal relationship in relation to care giving and care-recipient dependency needs using a modified version of the CADI; and, the 28-item GHQ.

SETTING: Lancashire communities of Fleetwood, Thornton-Cleveleys, Poulton- Le-Fylde and Over-Wyre.

RESULTS: Ninety one (72%) carers of the elderly mentally infirm participated in the study. Carers (n = 48) of the demented experienced significantly more burden, including psychological and physical health problems than carers (n = 43) of the non-demented (P = 0.001). The prevalence of emotional distress in all carers was 42% (dementia supporters = 56%, non-dementia supporters = 26%). Emotional distress in supporters was directly related to the degree of difficulties (particularly lack of private time, loss of control in caregiving tasks, patient behavioural problems) experienced in care giving, and, the degree of patient dependency needs. Carer/patient interpersonal relationship tended to worsen as care giving progressed; however, no significant association was established between duration of care and emotional distress in carers. Out of 51 carers receiving respite admission services, six (12%) considered such admissions as additional burden.

CONCLUSIONS: Carer burden, including psychological and physical health concerns, was comparatively greater in carers of the demented than in carers of the non-demented. Respite care services although beneficial to most care givers, may constitute further burden to some. Factors accounting for these observations are explained. To ameliorate carer burden, measures enabling greateravailability of private time, and, improving care giving skills, should be encouraged.

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