The majority of parents want to continue caring for their sons and daughters with disabilities at home, and they are expected and actively encouraged to do so. Notwithstanding, and for reasons that are not well understood, a substantial number of parents seek to place their disabled son or daughter out-of-home. The aim of this study was to investigate the attitudes of parent-carers in Alberta, Canada, toward out-of-home placement. The primary objective was to identify factors that may explain why some families, and not others, seriously consider out-of-home placement as an option for their child. This knowledge is vital for developing social care policies and programs that support parents and promote sustainable family care for children with disabilities. A stratified (by child age group) random sample of 538 families raising children with disabilities in Alberta, Canada took part. Participants completed the family life survey, which incorporated measures of child and family characteristics, sustainability of the daily routine, and out-of-home placement propensity. Results suggest that family placement propensity is inversely associated with the sustainability of the daily routine. Sustainability of the daily routine is, in turn, more strongly associated with social-ecological resources, including parental control-over-work and the adequacy of child care options, than with child characteristics, including activity limitations and behaviour problems. If families have the social-ecological resources they need to create and maintain a daily routine that is congruent with their values and goals, and with the needs, interests and competences of family members, then they are unlikely to give out-of-home placement any serious consideration.
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.
The perspective of parents whose children are in residential care, has received only minor attention in the literature, despite evidence pointing out the value of parental involvement in care delivery for their child. Drawing upon in‐depth interviews with 12 parents of adolescent girls with multiple and complex needs in residential child welfare, this exploratory study describes parents' own needs and preferences with regard to care delivery. Parents wish: (a) to have a true partnership between parents and professionals (involvement), (b) to feel respected by professionals (respect), (c) to have the information and mandate necessary for decision‐making (agency), and (d) to receive consideration and (emotional) support, besides advice on how to handle the challenges their family faces (support). Their plea draws attention to an aspect of the dimension of "parent–caregiver partnership" in family‐centred residential care that deserves more emphasis. Indeed, being attentive to the needs of parents can contribute to the optimization of services for the most vulnerable families.
The current Western health policy of ageing in place relies on a triad collaboration among patients, healthcare service providers and family caregivers. Such collaborations presuppose involvement in a vague juridical landscape. This article explores family caregivers' experiences with involvement in and influence on nursing home decision-making processes for persons with dementia. The data consist of 12 in-depth interviews with family caregivers. Using positioning theory, we demonstrate how family caregivers strive to balance their assumed duty to care for the person with their needs to care for themselves. Their involvement (or non-involvement) in the complex decision-making process is demonstrated through the following seven positions: (1) self-condemning determiner, (2) dominant, (3) proponent, (4) saluting, (5) pending, (6) prisoner, and (7) stooge. Furthermore, we discuss why expedient positions are more available for some individuals and the consequences of family caregivers' various positions on the healthcare policy aims of collaboration and equal healthcare services.
Aims: To understand factors influencing the experience of carers for people with dementia, when that person moves from living in the community to living in residential care. Specifically, we aimed to identify facilitators and inhibitors of carer adjustment during this transition. Method: A systematic search of CINAHL, EMBASE, PubMed, and PsycINFO databases was conducted. Nine qualitative articles published between 2001 and 2017, based on the experiences of 141 carers, were included. Thematic analysis was applied to the data, with the concepts of transition inhibitors and facilitators being used to structure the analytic process. Results: Analysis produced five themes, representing factors that could affect carer experiences of the focal transition-process: modifying the difficulty of this process according to their presence or absence. The themes were (1) Connection, pertaining to the carer feeling connected to the person with dementia and professionals during this transition; (2) Informed & Informing, relating to exchange of information between the carer and facility staff or health professionals; (3) The facility: welcoming & skilful, dealing with carer perceptions of the facility and their confidence in the staff; (4) It's What You Make of It, discussing the meaning the carer made of the admission and the impact this had; and (5) Sharing Responsibility, addressing how carers were affected by the perceived sharing of responsibility for care-provision. Conclusions: A supportive network has a significant role to play in facilitating this transition for carers. However, further research into what carers would find useful during this time is needed.
Long-stay home care clients mostly reside in private homes or retirement homes, and the type of residence may influence risk factors for long-term care placement. This multi-state analytic study uses RAI-Home Care and administrative data from the Hamilton Niagara Haldimand Brant Local Health Integration Network to model conceptualized states of risk at baseline through a 13-month follow-up period. Modifiable risk factors in these states were client loneliness or depressive symptoms, and caregiver distress. A higher adjusted likelihood of being discharged deceased was found for the lowest-risk clients in retirement homes. Adjusting for client, service, and caregiver characteristics, retirement home residency was associated with higher likelihood of placement in a long-term care home; reduced caregiver distress; and increased client loneliness/depression. As an alternative to private home settings as the location for aging in place among these long-stay home care clients, retirement home residency represents some trade-offs between client and informal caregiver.
BACKGROUND AND OBJECTIVES: People with dementia become increasingly dependent on others for care as cognition declines. Decision making about placement of people with dementia into long-term institutional care can be emotionally complex. The objective of this review is to describe experiences and perspectives of people with dementia and their family caregivers in making decisions about institutional care placement. RESEARCH DESIGN AND METHODS: MEDLINE, Embase, PsycINFO, and CINAHL were searched from inception to August 2018. Thematic synthesis was used to analyze results. RESULTS: We included 42 studies involving 123 people with dementia and 705 family caregivers from 12 countries. We identified five themes: ensuring safety (avoiding injury due to frailty, protecting against dangerous behaviors, preventing aggressive encounters), reaching breaking point (insufferable burden of caregiving, needs exceeding capabilities, intensifying family conflict, loneliness and isolation, straining under additional responsibilities, making extreme personal sacrifices), vulnerability in lacking support (ill-prepared for crisis, unable to access professional expertise, unpredictable prognostic trajectory, uncertainty navigating health care services, pressured by limited placement opportunities, high cost of placement, resenting loss of autonomy), avoiding guilt of abandonment (sharing accountability, mitigating against disagreement and stigma, reluctance to relinquish caregiving, seeking approval), and seeking reassurance and validation (preserving personhood and former identity, empowerment through engagement, assurance of care quality, acceptance from other care residents). DISCUSSION AND IMPLICATIONS: People with dementia and family caregivers feel vulnerable, disempowered, and guilty in decision making about institutionalization. Person-centered communication and support strategies that foster confidence and reassurance are needed to assist people with dementia and caregivers to make decisions about placement into long-term institutional care settings.
Aim and objective To explore the challenges faced by family caregivers of people with frontotemporal dementia and other forms of dementia affecting the frontal and temporal lobes causing behavioural disturbances through a qualitative approach with in‐depth interviews. Background Studies of different forms of dementia involving degeneration of the frontal and temporal lobes have mainly focused on the neurophysiology and physiology of the disease and on caregivers’ health. Few studies have described the challenges and burdens connected with everyday life and in relation to suitable nursing home placement that are faced by family caregivers. Method and design This study used a descriptive and explorative design. Eleven semi‐structured interviews with family caregivers of patients from special units in four nursing homes were conducted in 2014. Data were analysed based on Kvale and Brinkmann's three contexts of interpretation: self‐understanding, common sense and theoretical understanding. Checklist for qualitative studies: Standards for Reporting Qualitative Research (SRQR) http://www.equator-network.org/reporting-guidelines/srqr/ Results Two central themes were derived from the data: changes in behaviour and personality were perceived as incomprehensible, frightening and increasingly difficult to manage. Family caregivers experienced challenges in finding suitable care facilities when they were not able to continue providing home care. Due to behavioural disturbances and lack of relevant competencies among health personnel, family members were often moved between nursing homes. Conclusion Pronounced personality and behavioural disturbances such as tactlessness and aggression in a family member with dementia are experienced by caregivers as stressful and burdensome and may lead to feelings of shame and guilt. A lack of suitable care facilities adds to the stress and difficulties of the families and entails an additional and unresolved burden. Relevance to Clinical Practice The study reveals a need for more knowledge among those organising health services as well as healthcare professional dealing with this patient category to ease the burden on next of kin.
Background: Families do not fully disengage from care responsibilities following relatives' admissions to residential long-term (RLTC) care settings such as nursing homes. Caregiver stress, depression, or other key outcomes remain stable or sometimes increase following a relative's RLTC entry. Some interventions have attempted to increase family involvement after institutionalization, but few rigorous studies have demonstrated whether these interventions are effective in helping families navigate the potential emotional and psychological upheaval presented by relatives' transitions to RLTC environments. The Residential Care Transition Module (RCTM) provides six formal sessions of consultation (one-to-one and family sessions) over a 4-month period to family caregivers who have admitted a relative to a RLTC setting. Methods: In this embedded mixed methods randomized controlled evaluation, family members who have admitted a cognitively impaired relative to a RLTC setting are randomly assigned to the RCTM (n = 120) or a usual care control condition (n = 120). Primary outcomes include reductions in family members' primary subjective stress and negative mental health outcomes; secondary role strains; and residential care stress. The mixed methods design will allow for an analysis of intervention action mechanisms by "embedding" qualitative components (up to 30 semi-structured interviews) at the conclusion of the 12-month evaluation. Discussion: This evaluation will fill an important clinical and research gap by evaluating a psychosocial intervention designed for families following RLTC admission that determines whether and how the RCTM can help families better navigate the emotional and psychological challenges of residential care transitions. Trial registration: ClinicalTrials.gov (NCT02915939, prospectively registered).
This briefing summarises the findings of a study into whether there is a universal optimal time for people living with dementia to move to a care home. The research drew on the experiences of people living with dementia and family carers, as well as social workers and care home managers. It found that factors to consider include the wellbeing of the person living with dementia, the ability of family members to support them and the availability of suitable care home places.
Objectives: Family caregivers (defined broadly as family and friends) of persons with dementia are challenged to cope with myriad stressors and changes that occur along the dementia trajectory. The purpose of this study was to explore the transitions experienced by caregivers of persons with dementia after their relative relocated to a 24-hour care home. Method: Qualitative thematic and conversational analysis were used: themes were co-created and modes of speech and syntactical patterns analysed to expose discourses related to caregiving after placement in 24-hour care homes. Results: Four main themes were co-constructed from the data analysis: living with loss, relinquishing, redefining the caregiving role, and rediscovering and recreating a new self. Discussion: Caregiving continues after placement of family members with dementia in 24-hour care homes. Caregivers are at-risk group and require ongoing support throughout the caregiving journey. Study participants reported that navigation skills such as relationship building, communication, and advocacy were particularly salient to the post-placement period, when navigating the complex health care environment was a significant obstacle. Ultimately, findings from these focus groups will be used to inform an online intervention to support caregivers of a family member with dementia residing in a 24-hour care home.
Aim and objectives: The aim of this study was to explore family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities. Background: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life. Design: A qualitative design with a phenomenological approach was adopted. Methods: In-depth interviews were performed with 10 family caregivers of residents in 3 Norwegian long-term care facilities. Results: The family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities were characterized by responsibility and guilt. Admission to a long-term care facility became a painful relief for the family caregivers due to their experiences with the poor quality of palliative care provided. The lack of meaningful activities and unsatisfactory pain relief enhanced the feelings of responsibility and guilt among the family caregivers. Despite the feelings of insecurity regarding the treatment and care given during the early phase of the stay, the family caregivers observed that their close family member received high-quality palliative care during the terminal phase. The family caregivers wanted to be involved in the care and treatment, but some felt that it became a heavy responsibility to participate in ethical decision-making concerning life-prolonging treatment. Conclusions: The family caregivers experienced ongoing responsibility for their close family members due to painful experiences with the poor quality of the palliative care provided. When their expectations regarding the quality of care were not met, the palliative care that was offered increased their feeling of guilt in an already high-pressure situation characterized by mistrust.
Aims: To synthesize factors that facilitates or hinders the choice of a new living environment for a person with dementia by the informal caregiver.; Background: In an effort to develop evidenced-based interventions to support caregivers, it is essential to explore their experience.; Design: A qualitative systematic review using thematic synthesis. Studies published up to July 2019 were retrieved from four electronic databases. Two independent reviewers selected studies and assessed their methodological quality.; Findings: Choosing a new living environment for a person with dementia includes two main concerns for caregivers: (1) evaluating the current living environment and caregiving arrangements; and (2) evaluating potential living environments. The key factor, that is acceptability, reflects the extent to which a change of living environment is personally and socially perceived as desirable, suitable, as well as decent for all stakeholders.; Conclusions: Future interventions must consider that caregivers' decision-making process is highly social and value-laden.
Family caregivers of individuals with Alzheimer's disease and related dementias (ADRD) experience long-term mental health effects. Although caregivers who place relatives in long-term care (LTC) experience increased depression, anxiety, and chronic grief post-placement, interventions to improve caregivers' mental health have focused mainly on in-home care. Current researchers previously tested a group-based Chronic Grief Management Intervention (CGMI) with ADRD caregivers of individuals in LTC, with significant effects on caregiver mental health outcomes. In the current study, researchers adapted the CGMI for synchronous online video using Adobe® ConnectTM and iPads® (Chronic Grief Management—A Live-Streaming, Online Intervention [CGMI-V]). Specific aims were to test feasibility of digital delivery of the CGMI-V and explore caregivers' online group experience. Researchers assessed participants at baseline for sociodemographic information and at the end of the program with a four-item satisfaction survey and focus group. Digital delivery of the CGMI-V was feasible and caregiver satisfaction was high.
Aims: This descriptive qualitative study was conducted in an attempt to understand the experiences of family members of people with dementia in the process of deciding to institutional their care. Methodology: The data were collected from 15 caregivers using a semi-structured data form with in-dept interviews. The data were analyzed using qualitative content analysis. Results: Three main themes identified were having difficulty providing care, seeking solutions to maintaining care at home, and difficulty in decision-making to place their family members in a long-term care facility. Conclusions: Turkish families experiences difficulties about decision making process for placing their loved ones in a long term care. Results showed us that they need support in this process. Nurses should consider their feelings and support them.
This study explored informal caregivers' experiences of transitioning an older adult into long-term care (LTC). Qualitative description guided our analysis of semi-structured interviews with 13 informal caregivers of older adults from three LTC homes in southern Ontario. Our findings illustrate that caregivers experience chronic worry and burden before deciding on, or requiring to apply for, LTC. A sense of lack of control was a prominent theme, especially when caregivers were applying for LTC beds. Participants perceived pushing, pressure, and punishment from the health care system and felt relieved and fortunate after they accepted a bed offer. This tumultuous experience stimulated caregivers to anticipate future transitions. It is recommended that caregivers receive preparation and targeted support to manage transition experiences. Improved communication among health professionals is essential. Penalties for declining an offer for a bed in LTC should be re-examined in relation to its negative influence on caregivers' experience.
PURPOSE: The perspectives of people with dementia and their care partners regarding "extra care" housing are currently unknown. The purpose of this paper is to report findings of a consultation study exploring the perceived barriers and facilitators of a relocation to extra care housing, from the perspective of people living with dementia, and their care partners. DESIGN/METHOOLOGY/APPROACH: Fieldwork consisted of paired or 1-1 interviews and small focus groups with potential users of an alternative model of extra care support for people living with dementia in the South of England. The consultation took place between June and August 2013. The interviews and focus groups were audio recorded, transcribed verbatim. The transcripts were analysed thematically. FINDINGS: Benefits of extra care were identified as the opportunity for couples to remain living together for longer, creating a supportive, dementia-friendly community, and a reduction in the strain experienced by the care partners. Barriers centred on a sense of loss, stress and uncertainty. Living and caring at home was perceived as preferable to shared care. RESEARCH LIMITATIONS/IMPLICATIONS: The findings presented here have limited generalisability for two reasons. First, the shared care approach consulted on was very specific. Second, the participants form a purposive sample and as such are not representative of a wider population. Despite best intentions, the voice of people with dementia, are underreported in this consultation. Only one person with early on-set dementia was interviewed and the remaining two people with dementia were interviewed alongside their care partner. PRACTICAL IMPLICATIONS: The findings cast doubt on the viability of extra care facilities, designed for couples living with dementia, if extra care continues to be conceptualised and marketed as a preventative lifestyle choice. The findings indicate the value of consulting with people with dementia, and their care partners, when designing new forms of housing with care specifically for people living with dementia. SOCIAL IMPLICATIONS: The findings of this consultation exemplify the wish of couples living with dementia to remain together, in what they perceive to be "home", for as long as possible. Couples living with dementia are therefore unlikely to wish to move into an extra care facility as a lifestyle choice option, early into their journey with dementia. This raises questions about the suitability of extra care, as a form of housing with care, for couples living with dementia. ORIGINALITY/VALUE: This paper contributes to the body of literature, exploring the feasibility of new and innovative alternative care and housing options, for people with dementia. This paper is one of the first to explore extra care as a housing and social care option for couples with dementia.
Purpose: The purpose of this paper is to review and synthesise the research literature on the quality of life (QoL) of both caregivers (CGs) and care recipients (CRs) with dementia after admission to long-term care facilities. Design/methodology/approach: Four databases – AgeLine, Medline, EBSCO, and PyscINFO – were searched and the relevant literature from 2002 onwards was reviewed. Findings: The review of 12 studies (five studies, including only family CGs; six studies including residents; one study including both family CGs and CRs) reveals a discrepancy regarding the effects of institutionalisation on the CRs’ and CGs’ QoL. Among seven studies on CRs’ QoL change, some reviewed studies found a significant decline in CRs’ QoL after placement with others showing that CRs’ QoL was improved or stable. While some reports indicated that some family CGs benefited from placement, others showed that CGs merely maintained their QoL. However, family CGs in the reviewed studies were more likely to report improved QoL than were their CRs after institutionalisation. Research limitations/implications: The authors recommend that future studies should focus on understanding the individual’s adaptation to placement, dyadic changes in QoL (including mediators/moderators). They emphasise the need for a comprehensive longitudinal study with more than one wave and includes diverse groups including racial/ethnic minority CGs and CRs. Originality/value: This study reviewed and synthesised the research literature on the QoL of both caregiver and the people with dementia they cared for after those they cared for were admitted to long-term care facilities. The conclusions drawn about influences on QoL provide guidance for identifying best practices and research.
Background During the transition of people with dementia from home to nursing home family caregivers often feel burdened. ObjectivesWe aimed to 1) identify interventions which support people with dementia and their caregivers in the transition from home care to nursing home care, 2) synthesize the evidence for efficacy of these interventions, and 3) examine whether the identified interventions have been systematically developed, evaluated and implemented according to the Medical Research Council guidance on complex interventions. Design A systematic review of randomised controlled trials was conducted according to the recommendations specified in the Cochrane Handbook for Intervention Reviews. The review protocol was registered in PROSPERO (2015: CRD42015019839). Reporting follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses: the PRISMA statement. Data sourcesMEDLINE, CENTRAL, PsycINFO, CINAHL, OTseeker, and PEDro, were searched. Other sources included Google Scholar, and ALOIS. Review methodsTwo reviewers independently assessed the eligibility of the articles. Data extraction was performed by one reviewer and verified independently by another. The Cochrane Risk of Bias tool was used for critical appraisal. Development and evaluation of the identified interventions were assessed, taking the Medical Research Council guidance into account. Review findings were synthesized narratively. Results The search yielded 1278 records. Five studies were included, all conducted in the United States (4 RCTs and 1 cRCT with a total of 695 participants). The psychosocial interventions were individual and family counseling via telephone or ad hoc all of which addressed only informal caregivers. The intervention components, content and mode of delivery differed widely with inconsistent results. Significant intervention effects were found for the reduction of caregivers’ depressive symptoms, burden, feeling of guilt, emotional distress, overload, and interactions with staff. Other outcomes, i.e. stress, placement adaptation, role overload, and role captivity, were not statistically significantly affected. The assessment for bias risk across studies varied from moderate to low. Only two studies tested the feasibility of the intervention before full scale evaluation, none evaluated the implementation process according to the Medical Research Council framework. Conclusions We identified only a few studies with heterogeneous outcomes evidence regarding the effectiveness of psychosocial interventions is thus insufficient. Further research is needed focusing on the development and evaluation of complex psychosocial interventions and more well-designed RCTs with larger sample sizes based on a rigorous methodology. Reporting on feasibility and implementation processes of interventions should be guaranteed, since it is crucial to evaluate transferability across care settings.
Purpose of the Study: To describe skilled nursing facility (SNF) nurses’ perspectives on the experiences and needs of persons with dementia (PwD) during hospital-to-SNF transitions and to identify factors related to the quality of these transitions. Design and Methods: Grounded dimensional analysis study using individual and focus group interviews with nurses (N = 40) from 11 SNFs. Results: Hospital-to-SNF transitions were largely described as distressing for PwD and their caregivers and dominated by dementia-related behavioral symptoms that were perceived as being purposely under-communicated by hospital personnel in discharge communications. SNF nurses described PwD as having unique transitional care needs, which primarily involved needing additional discharge preplanning to enable preparation of a tailored behavioral/social care plan and physical environment prior to transfer. SNF nurses identified inaccurate/limited hospital discharge communication regarding behavioral symptoms, short discharge timeframes, and limited nursing control over SNF admission decisions as factors that contributed to poorer-quality transitions producing increased risk for resident harm, rehospitalization, and negative resident/caregiver experiences. Engaged caregivers throughout the transition and the presence of high-quality discharge communication were identified as factors that improved the quality of transitions for PwD. Implications: Findings from this study provide important insight into factors that may influence transitional care quality during this highly vulnerable transition. Additional research is needed to explore the association between these factors and transitional care outcomes such as rehospitalization and caregiver stress. Future work should also explore strategies to improve inter-setting communication and care coordination for PwD exhibiting challenging behavioral symptoms.
Background: Persons with dementia (PWDs) and their caregivers often face difficult housing decisions, that is, decisions about their living arrangements, in which the perspectives of all members of the care network should be involved.; Objective: We performed a qualitative data analysis to assess the extent to which housing decisions for PWDs with their formal and informal caregivers correspond to an interprofessional shared decision making (IP-SDM) approach, and what light this approach sheds on their experiences with decision making.; Research Design and Methods: We used the IP-SDM model to content-code and analyze data from 4 care networks, each consisting of a PWD, 2 informal and 2 formal caregivers.; Results: Decision making in all networks corresponded to most IP-SDM elements, but never included all network members. Decision making was guided by the wishes of the PWD, but their actual involvement decreased over time.; Discussion: Results show that while the IP-SDM model was helpful, the options change with cognitive decline and moving to a nursing home can become inevitable in spite of preferences.; Implications: Timely and honest communication helps to mitigate the distress of deciding against patient preferences, as could advance care planning about future housing transitions.
Background: Dementia is a globally prevalent disease that requires ongoing and increasing levels of care, often provided in the first instance by informal caregivers. Supporting transitions in informal caregiving in dementia is a pertinent issue for caregivers, care providers and governments. There is no existing systematic review that seeks to identify and map the body of literature regarding the review question: 'What happens for informal caregivers during transition to increased levels of care for the person with dementia?'; Methods/design: ASSIA, CINAHL+, MEDLINE, PsycINFO, SCIE, Social Service Abstracts and Web of Science will be systematically searched. Specialist dementia research libraries will be contacted. Reviews identified as relevant during the search process, their reference lists, and reference lists of accepted papers will be hand-searched. Qualitative, quantitative and mixed methods studies that seek to represent the experiences of, or examine the impact upon, informal caregivers during transition to increased formal care for the person with dementia will be eligible for inclusion. Synthesis will be segregated into qualitative and quantitative papers. Findings will be summarised, and the review will be prepared for publication.; Discussion: The review will seek to identify potentially vulnerable groups in need of support and as such, inform the practice of those offering support. It will also inform future research by highlighting areas in which current literature is insubstantial.; Systematic Review Registration: PROSPERO CRD42017067248.;
Background: Our ageing society is putting tremendous strain on public health and welfare programs to meet the needs of ageing individuals. Promoting informal caregiving is one way for policymakers to reduce this burden. However, caregiving may be experienced as stressful and is associated with adverse health consequences. While quite a lot of research focuses on caregiving for community-dwelling older adults, little is known about informal care in institutionalised long-term care (ILTC). Therefore, the objectives of this study were: 1) to compare characteristics of informal caregivers and care receivers and caregiver outcomes - at home and in ILTC; 2) to study the association between these characteristics and positive and negative caregiver outcomes; 3) to investigate the moderating effect of the setting (at home vs. ILTC) on these associations.; Methods: A cross-sectional study was conducted using the TOPICS-MDS DataSet. A total of 5197 Dutch dyads were included. The average age of the care receivers and caregivers was respectively 80.7 years and 63.2 years. Several sociodemographic, health-related and caregiving-related characteristics of care receiver and caregiver and two caregiver outcomes (i.e., subjective burden and care-related quality of life) were included in the analyses.; Results: Caregivers in both settings experienced comparable levels of subjective burden. Caregivers at home had slightly lower care-related quality of life than caregivers in ILTC. Several care receiver characteristics (i.e., male sex, married/cohabiting, more morbidities/disability, and less self-perceived health/psychological wellbeing) and several caregiver characteristics (i.e., female sex, being younger, living together with the care receiver, more objective burden, less self-perceived health, and more support) were associated with an increase in burden and/or a decrease in care-related quality of life. Some of these associations were stronger for dyads at home compared to dyads in ILTC.; Conclusions: Informal caregiving does not stop with admission to an ILTC facility. Both settings need an informal caregiving policy, which is (1) tailored to the individual characteristics of care receivers and caregivers; (2) pays attention to the identified risk groups; and (3) reduces the negative caregiver outcomes and emphasizes the positive outcomes at the same time.
Aim: To explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia. Background: The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding. Design: Descriptive qualitative study. Methods: During 2015 twenty semi-structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke's thematic analysis. Results: Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer's holistic well-being and their experience of being a best interest decision-maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff. Conclusion: The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs' dementia expertise to maximize their role in facilitating best interest decision-making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia, our findings have international relevance to similar nursing homes across the world.
Background: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. Aim: To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Design: Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. Setting/participants: A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. Results: The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p < 0.001). Conclusion: Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers.
Background Informal caregiving offered by family members has been widely studied in the community setting, but little attention to date has been dedicated to that offered at the hospital level. Aims To describe the proportion of patients admitted to acute medical units receiving care from informal caregivers as decided by the family and to identify the factors affecting the numbers of care shifts performed by informal caregivers. Design and methods A longitudinal study was performed involving 12 acute medical units located in 12 northern Italian hospitals. Results All patients (N = 1464) admitted to medical units were included, and 77.1% of them received at least one shift of informal care during their in-hospital stay, especially during the mornings and afternoons. At the patient level, those at higher risk of prolonged hospitalisation and difficult discharge at admission, and those reporting higher occurrence of adverse events, such as pressure sores, confusion events and use of physical restraints during hospitalisation, were more likely receiving informal care. At the nursing care level, a higher amount of missed nursing care was associated with an increased number of care shifts offered by informal caregivers during patient hospitalisation, whereas the amount of care offered by staff was a protective factor. Conclusions Families play a care role in the care of older patients admitted to acute medical units. They contribute substantially to the care of patients, especially during morning and afternoon shifts.
The importance of informal care provided inside the household (co-residential care) is widely acknowledged in policy circles. However, the factors that determine the likelihood and scale of provision are not fully understood. A two-part model (2PM) is used to investigate both participation and levels of provision. Random effects dynamic panel specifications are employed. Results show that co-residential informal care competes with other time demanding activities, such as childcare and employment. Wealthier individuals are less likely to be caregivers, whereas wealthier households have a higher tendency towards caregiving. Evidence of both substitution and complementarity is found between formal and informal care. Informal care and health status are significantly related, with carers more likely to report worse General Health Questionnaire scores than non-carers. Finally, significant dynamic effects are observed with the continuance of the provision of informal care being more likely than the initiation of such activity, while heavy commitment in the past increases the hours provided in the current period.
Mealtimes in residential care homes are fundamentally social occasions, providing temporal structure to the day and opportunities for conversation and companionship. Food and drink are imbued with social meanings and used to express and create relationships between people. There is a dearth of research exploring care home residents' mealtime experiences in the United Kingdom. This paper reports on particular findings from a qualitative study which investigated factors influencing nutritional care provided to residents in two different types of residential care settings in South Wales, UK. Data were generated through focus group interviews with relevant staff members (N = 15), individual interviews with managers (N = 4) and residents (N = 16) of the care homes and their informal carers (N = 10), observation of food preparation and mealtimes throughout the day, and analysis of appropriate documents. Data were analysed using thematic analysis. This paper's focus is on the ways in which care home residents' experiences and understandings of mealtimes were influenced by various environmental factors, such as the home's geographical location, physical lay-out and ambience. Moreover, the shared meaning of mealtimes for residents, informal carers and staff was constructed from each group's socio-cultural background, family experiences and memories, and was integral to residents' sense of normality, community and identity.
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.
The value of care provided by informal carers in Canada is estimated at $26 billion annually (Hollander et al., 2009). However, carers’ needs are often overlooked, limiting their capacity to provide care. Problem-solving therapy (PST), a structured approach to problem solving (PS) and a core principle of the Reitman Centre CARERS Program, has been shown to alleviate emotional distress and improve carers’ competence (Chiu et al., 2013). This study evaluated the effectiveness of problem-solving techniques-based intervention based on adapted PST methods, in enhancing carers’ physical and emotional capacity to care for relatives with dementia living in the community.
56 carers were equally allocated to a problem-solving techniques-based intervention group or a control arm. Carers in the intervention group received three 1 hr visits by a care coordinator (CC) who had been given advanced training in PS techniques-based intervention. Coping, mastery, competence, burden, and perceived stress of the carers were evaluated at baseline and post-intervention using standardized assessment tools. An intention-to-treat analysis utilizing repeated measures ANOVA was performed on the data.
Post-intervention measures completion rate was 82% and 92% for the intervention and control groups, respectively. Carers in the intervention group showed significantly improved task-oriented coping, mastery, and competence and significantly reduced emotion-oriented coping, burden and stress (p < 0.01–0.001). Control carers showed no change.
PS techniques, when learned and delivered by CCs as a tool to coach carers in their day-to-day caregiving, improves carers’ caregiving competence, coping, burden, and perceived stress. This may reduce dependence on primary, psychiatric, and institutional care. Results provide evidence that establishing effective partnerships between inter-professional clinicians in academic clinical health science centers, and community agencies can extend the reach of the expertise of specialized health care institutions.
Details of service receipt by 132 people diagnosed with dementia and their carers were collected in South London (boroughs of Lewisham, Camberwell, Southwark and Croydon), a geographical area served by several health and social care providers. The data collected included the Caregiver Activity Survey, which details the informal care given. This paper reports the formal and informal services received by the people with dementia at entry to the study. The amount of time spent on specific caring tasks by all informal carers of people with dementia averaged seven hours per week, but was significantly higher for co-resident carers, even when controlling for the level of dependency of the person cared-for. The odds ratios of receipt of formal services are given, according to where people were living: in the community or residential care, with co-resident carers or alone.
Emotions are an integral part of our daily lives, affecting who we are and how we react to the people and places around us. This emotiospatial hermeneutic has particular resonance for understanding informal carers' experiences of transitions in the place of care. Yet little work has explicitly addressed the link between emotions, care, and place. That which has focuses largely on community and the home, and largely ignores the transition of care from the home to care-home settings. Drawing on carer narratives from New Zealand, this paper examines how emotion and the affective entity of informal caregiving for frail older people is manifest and experienced as the site of care shifts from the private space of the home to the semipublic space of the residential care home. In doing so, the paper contributes, first, to conceptual debates around the geography of emotions, and, second, to a deeper understanding of how informal carers seek to create new identities for themselves as carers in the new place of care. Finally, drawing on debates around the meaning of home, I consider the extent to which informal carers can feel ‘at home’ caring for their spouse or close family member within care-home settings.
Drawing on carer narratives from research undertaken in New Zealand, this paper considers the interrelationship between place and the care-giving experience. In doing so, it considers: first, how informal carers of older people experience the transition in the place of care from the home to care homes; second, how they negotiate new identities for themselves as carers in these new care settings; and third, carers' views on how we might develop more inclusive models of care in care home settings. While much current work on care-giving in the home highlights the blurring of the boundaries between formal and informal care-giving, this paper suggests that the blurring of the boundaries of care may also be manifest in an increased penetration of informal care-giving within the semi-public space of the residential care home.
This paper aims to discuss the reasons why caregiving in the community had ended for a sample of dependent older people, two-thirds of whom had dementia. Comparisons are made between the situation of a spouse caring for a partner and a daughter or son caring for a parent in a separate household. Spouses in the study had often sustained a greater burden before caregiving collapsed than had daughters or sons. They were less likely, however, to have had support from the home care service. When caregiving in the community ended and the dependent older person entered a care home, family caregivers themselves often had a financial price to pay. Currently spouses have a legalliability to contribute to a partner’s care costs. The implementation of this liability depended on individual local authority policies and the views of the individual social worker doing the financial assessment. Because of the UK’s means-testing rules, daughters and sons were often penalized because a parent’s assets that they might have inherited had to be used to meet the care home costs. Resentment at being disinherited was related to the daughter’s or son’s family situation. Those with children or grandchildren themselves were far more likely to be angry than those without children.
Statistics on service provision in Scotland to older people, people with learning disabilities, people with mental health problems, disabled people, carers and other users. Provides figures on domiciliary care, day care, residential care, private nursing homes, hospitals and special needs housing for each user group.
Original document (pdf) on the Scottish Government website.
Solidarity and equal access are twin principles in the Dutch health care system: solidarity between the rich and poor and among people with high and low risks formally guarantees equal access to health care services. However, in the past few years government policies, guided by the ideology of market reform and free choice, have resulted in patterns of inequality that favour privately insured over sickness fund insured. In the meantime, the level of public support for the principles of solidarity and equal access is dropping. A significantly larger portion of the Dutch people now believes that it would be too costly to grant everyone the right to all medical treatments possible. An important reason for the decline of solidarity and equal accessibility is the scarcity of resources. The scarcity of resources and the waiting lists resulting from it will reduce the extent of the benefits package and the access to the care services of the health system. The better-off will have the resources to receive care services that are not part of the basic package. Moreover, the scarcity of resources will affect the readiness in society to provide informal care. Opposed to the compulsory macro solidarity of the health insurance system, informal care is based on a voluntary kind of solidarity in which personal choice plays an important role. Waiting lists and diminishing professional support weaken this readiness, as such support is a necessary condition for informal carers to keep caring for their relatives and friends. Because the informal care system is a necessary supplement to the formal system of care, the lack of help offered by the latter will in the end endanger the solidarity not only in informal care, but in the institutional care system as well.
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.
Background. With the emerging focus on home-based care, there is an increasing demand on spouses to look after their chronically ill partners at home. The theoretical aspects of caring have been much discussed in the literature, but the pragmatic aspects have received less attention. Carer stress has been explored, but little has been written about the meaning of caring to informal carers.
Aim. The aim of this paper is to report one of the major themes that emerged from a study conducted between 1998 and 1999 to explicate the meaning of caring from the perspective of spousal carers for people with multiple sclerosis in order to shed light on and understand the challenges and demands these carers encountered.
Methodology. An interpretive phenomenological approach was used to describe spousal carers’ experiences of caring for their partner. Ten spousal carers of people with multiple sclerosis participated. Data were collected through unstructured in-depth interviews and analysed by the method of hermeneutic analysis.
Findings. This paper presents one of the major themes identified: ‘caring as worrying’. While the meaning of caring that emerged from this theme supports many of the philosophical understandings of caring as discussed in the literature, worrying as a care responsibility provides a further insight. Caring as worrying describes caring as a complex emotional relationship of responsibility in these participants. They worried about their partners, their relationships with their partners and their future. They also worried about their own health, institutional care, and lack of government support.
Conclusion. Spousal carers’ worries have significant implications for health care professionals. The findings provide insight into the concerns and worries the carers of people with multiple sclerosis face when caring for their chronically ill partners at home.
One common myth about ethno-cultural minority family caregivers is that they do not use formal services. This study examined the intention of using home support and long-term care facilities by a random sample of 339 Chinese-Canadian family caregivers, using a modified version of the Andersen-Newman service utilization model. Filial piety, caregiving burden, care receivers, and health conditions are the common predictors identified. Filial obligation is most likely manifested through facilitating the care receivers to make use of the services needed, particularly for caregivers who reported a high level of caregiving burden.
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.
Objective: caregiver effects of geriatric care models focusing primarily at the patient have not been consistently studied. We studied caregiver effects of a nurse-led comprehensive geriatric evaluation and management (GEM) programme for community-dwelling frail older people that showed—in a randomised comparison with usual care-–health-related quality of life benefits for the care receivers.
Methods: this randomised trial included 110 caregiver/patient dyads who were followed up for 6 months. Primary analyses were intention-to-treat analyses of caregiver burden assessed with Zarit Burden Interview (ZBI; 0–88; higher means more burden). Preplanned subgroup analyses were conducted for cognition, living arrangement and patient/caregiver co-residence.
Results: overall, perceived caregiver burden showed no significant differences between study groups in changes over time. However, perceived burden was at baseline more than eight points higher in caregivers sharing a household with patients ( n = 23) compared to caregivers living separately ( n = 87). The intervention performed better in caregivers living together with the patient than in caregivers living separately ( P for interaction = 0.04). Co-resident caregivers experienced six-Zarit point improvement compared with four-point deterioration in the non-co-resident caregivers.
Conclusions: GEM at home benefited patients, but maybe not caregivers. Caregiver effects are related to whether caregivers live with the patient or not.
Care: Personal Lives and Social Policy considers how normative assumptions about the meanings, practices and relationships of care are embedded in our everyday lives. It explores the ways in which these shape our sense of self and the nature of our relations with others. At the same time the book examines how social policy and welfare practices construct these relations and give or deny them meaning and validity.
The authors draw upon a range of theoretical approaches and research evidence to bring into focus some of the different spaces and places where questions about care, in all its different dimensions, have been lived out, debated and struggled over. Each highlights the significance that class, 'race', gender, sexuality and age play in the analysis of care relations.
Background This study was designed to test the hypothesis that carer attributions for aggressive behaviour vary according to a service user's severity of intellectual disability.
Methods Forty-two residential care staff participated in an investigation examining the effects of the level of a service user's intellectual disability on causal attributions for their aggressive behaviour. Equal numbers of participants were assigned to either a ‘mild disability’ or a ‘severe disability’ condition and required to read a vignette depicting a service user with aggressive challenging behaviour. The service user's cognitive abilities were experimentally manipulated across conditions, whilst the behaviour described remained unchanged. Participants were required to make attributions along Weiner's (1980) dimensions of locus, stability and controllability, and in accordance with five prominent models of challenging behaviour (Hastings 1997b).
Results The service user depicted in the mild disabilities condition was perceived to have significantly greater control over factors causing the aggressive behaviour than the service user in the severe disabilities condition. Participants in the severe disabilities condition considered the aggression to be significantly more challenging. Learned behaviour and emotional causal models of aggressive behaviour were favoured, whilst the physical environment account was seen as least appropriate. Additionally, the biomedical model was rated as significantly more applicable in the severe disability condition than in the mild disability condition.
Conclusions Implications for staff and service users are discussed. In particular, the relationship between staff causal attributions for challenging behaviour, their emotional responses and willingness to engage in helping behaviour is explored.
Background: This paper synthesises research evidence about the effectiveness of services intended to support and sustain people with dementia to live at home, including supporting carers. The review was commissioned to support an inspection regime and identifies the current state of scientific knowledge regarding appropriate and effective services in relation to a set of key outcomes derived from Scottish policy, inspection practice and standards. However, emphases on care at home and reduction in the use of institutional long term care are common to many international policy contexts and welfare regimes.
Methods: Systematic searches of relevant electronic bibliographic databases crossing medical, psychological and social scientific literatures (CINAHL, IngentaConnect, Medline, ProQuest, PsychINFO and Web of Science) in November 2012 were followed by structured review and full-text evaluation processes, the latter using methodology-appropriate quality assessment criteria drawing on established protocols.
Results: Of 131 publications evaluated, 56 were assessed to be of ‘high’ quality, 62 of ‘medium’ quality and 13 of ‘low’ quality. Evaluations identified weaknesses in many published accounts of research, including lack of methodological detail and failure to evidence conclusions. Thematic analysis revealed multiple gaps in the evidence base, including in relation to take-up and use of self-directed support by people with dementia, use of rapid response teams and other multidisciplinary approaches, use of technology to support community-dwelling people with dementia, and support for people without access to unpaid or informal support.
Conclusions: In many areas, policy and practice developments are proceeding on a limited evidence base. Key issues affecting substantial numbers of existing studies include: poorly designed and overly narrowly focused studies; variability and uncertainty in outcome measurement; lack of focus on the perspectives of people with dementia and supporters; and failure to understanding the complexities of living with dementia, and of the kinds of multifactorial interventions needed to provide holistic and effective support. Weaknesses in the evidence base present challenges both to practitioners looking for guidance on how best to design and deliver evidence-based services to support people living with dementia in the community and their carers and to those charged with the inspection of services.
Care in the community has been constructed on the basis of professional support for carers who, as a result of community care policy that has released highly dependent people from residential care and long-stay wards, are carrying out a wide range of tasks, including complex health care activities. The present paper examines the health care activities currently undertaken by family carers and the way in which they work with, and are supported by, professional nurses in the home. It compares and contrasts the approaches of both groups to care-giving for this client group. The authors conclude by making some suggestions for improving the way in which family carers and nurses work together in the home.
Objectives: Treatment of challenging behaviour in dementia using standardized psychopharmacological or psychosocial approaches remains problematical. A case-specific approach was trialled in this study, based on extensive evidence that each case is different in aetiology, the effects of the behaviour on others and what interventions are possible given the available resources.
Method: Forty-four consecutive referrals for challenging behaviour (two-thirds in residential care) were assessed across multiple causal domains. Both assessment and development of interventions were undertaken in collaboration with family carers and care staff. Measures of behaviour and associated carer distress, as well as medication and service use, were taken pre-intervention and at 2- and 5-month follow-ups.
Results: Psychotropic medication was used with a minority of participants but, overall, antipsychotic use was reduced. Psychosocial methods predominated, with 77% of cases judged as mainly or entirely psychosocial by an expert panel. There were significant mean improvements in behaviour and carer distress. Using conservative criteria there was a 65.9% clinical success rate.
Conclusion: Results confirm those of other studies which have used multifaceted interventions tailored to the unique needs of each case. They compare favourably with results from trials of standardized psycho-pharmacological or psychosocial approaches. More trials are needed, necessarily involving further development of robust methodologies which reflect the case-specific nature of challenging behaviour associated with dementia.
Background: End of life (EoL) care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL care is ethical and culturally appropriate. This article aims to synthesize qualitative research on EoL care in sub-Saharan Africa to inform policy, practice and further research. It seeks to identify areas of existing research; describe findings specifically relevant to the African context; and, identify areas lacking evidence.
Methods: Relevant literature was identified through eight electronic databases: AMED, British Nursing Index & Archive, CINAHL, EMBASE, IBSS, MEDLINE, PsycINFO, and the Social Sciences Citation Index; and hand searches. Inclusion criteria were: published qualitative or mixed-method studies in sub-Saharan Africa, about EoL care. Study quality was assessed using a standard grading scale. Relevant data including findings and practice recommendations were extracted and compared in tabular format.
Results: Of the 407 articles initially identified, 51 were included in the qualitative synthesis. Nineteen came from South Africa and the majority (38) focused on HIV/AIDS. Nine dealt with multiple or unspecified conditions and four were about cancer. Study respondents included health professionals, informal carers, patients, community members and bereaved relatives. Informal carers were typically women, the elderly and children, providing total care in the home, and lacking support from professionals or the extended family. Twenty studies focused on home-based care, describing how programmes function in practice and what is needed to make them effective. Patients and carers were reported to prefer institutional care but this needs to be understood in context. Studies focusing on culture discussed good and bad death, culture-specific approaches to symptoms and illness, and the bereavement process.
Conclusions: The data support or complement the findings from quantitative research. The review prompts a reconsideration of the assumption that in Africa the extended family care for the sick, and that people prefer home-based care. The review identifies areas relevant for a research agenda on socio-cultural issues at the EoL in sub-Saharan Africa.
There is a continual need to support and assist carers who play a central role in providing informal care for a relative. This approach to care provision must have a strong foundation based on liaison between the family carers, professional carers and the older or disabled person who is the focus of care. Services that enable effective communication using videoconferencing, interactive communication, tailored Web based programs and other specific resources configured for the needs of the individual can help carers carry out their role effectively. The initiative described in this paper uses a combination of telematic focused interventions to meet the needs of carers and provides an in-depth overview of the ACTION telecare project.
The ACTION (Assisting Carers using Telematic Interventions to meet Older persons’ Needs) project was set up and funded because of the need to develop supportive methods for carers and older people. The initiative was designed to improve autonomy and maintain independence and quality of life for people in their own homes and therefore reduce the need for institutional care. This has an economic as well as a social dimension. The project has demonstrated that with the involvement of users at all levels it can fulfil this need. The role of the ACTION project was to develop a cost-effective telecare system for the provision of education, information and support and has been demonstrated with successful results.
Background: Population ageing has significant effects on societies. The organization of care for dependent old people is one of the key issues for ageing societies. The majority of care for homebound dependent old people in Slovenia is still performed by informal carers, even though the use of formal services has been increasing over the last 20 years. The proportion and characteristics of people with unmet needs are important for the development of long term care social policy.
Method: The SHARE (Survey of Health, Ageing and Retirement in Europe) survey was used to assess the determinants of care arrangements and of unmet needs of the aging population in Slovenia. Multinomial regression analysis was used to evaluate individual and contextual determinants of care arrangements and unmet needs.
Results: The proportion of older people with unmet needs is 4%. As expected, “needs” (Functional impairment OR=4.89, P=0.000, Depression OR=2.59, P=0.001) were the most important determinant, followed by the predisposing factor “age” (age OR 1.15, P=0.000) and two enabling factors, namely:“community setting and “availability of informal care within household” (Urban areas OR=.47, P=0.021; Household size 3+ OR=2.11, P=0.030).
Conclusion: This study showed that there are a proportion of older people in Slovenia with severe needs for care, which are being unmet. As shown by the importance of enabling factors, social policy should encourage the development of formal services in rural areas and elaborate policy measures for informal carers.
The Act makes provision about children, families, and people with special educational needs. Specifically, it covers: adoption and children looked after by local authorities; family justice (e.g. mediation); children and young people in England with special educational needs; childminding agencies; the Children's Commissioner; statutory rights to leave and pay; time off work for ante-natal care; and the right to request flexible working. Part 5 of the Act contains various provisions relating to the welfare of children, including giving children in care the choice to stay with their foster families until they turn 21, making young carers’ and parent carers’ rights to support from councils much clearer, reforming children’s residential care to make sure homes are safe and secure and a requirement on all state-funded schools (including academies) to provide free school lunches on request for all pupils in reception, year 1 and year 2.
Family carers provide more care than the combined efforts of the NHS and social services departments, and their value to the economy is estimated to be around £34 billion a year (Hirst, 1999). However, many carers have health problems of their own. Using three standardised measures to screen for activity limitation (ADLs), depression (GHQ-28) and health related quality of life (HRQoL) (SF36), a study of carers of people aged 75 and over referred consecutively to social services departments in adjacent inner city areas showed a high prevalence of limitations in activities of daily living (ADLs), that a substantial proportion (42 per cent) had GHQ-28 scores high enough to suggest depression and their scores on the SF-36 showed that many carers were low in vitality and tired. Co-resident carers had poorer psychological health and more difficulties with social functioning than non-resident carers, and were older, but were not significantly different in self-reported physical health. Whether carers wanted the cared-for person to remain at home for as long as possible depended on their relationship (spouse or not) and whether the older person was depressed. The carer’s own psychological health was not related to their attitude to institutional care. The study suggests that targeting social care resources on carers showing psychological distress may not reduce downstream expenditure on long-term care.
Statistics on service provision in Scotland to older people, people with learning disabilities, people with mental health problems, disabled people, carers and other users. Provides figures on domiciliary care, day care, residential care, private nursing homes, hospitals and special needs housing for each user group.
Original document on Scottish Government website.
The aim of this report is to identify patterns in the utilisation of formal and informal long-term care (LTC) across European countries and discuss possible determinants of demand for different types of care. It addresses specific research questions on the volume of different types of care and the conditions under which care is provided. The latter include demographic factors, especially population ageing, health status and the limitations caused by poor health, family settings and social networking. The analysis indicates substantial differences in the receipt of LTC across European countries, depending on traditions and social protection models, which determine both the availability of institutional care and the provision of informal care. In countries with a Scandinavian approach, where the levels of state responsibility and provision of institutional care are high, informal care is less prominent and is mostly provided on an irregular basis by caregivers outside the family. As needs for care increase, formal settings are more common. Countries in the Continental Europe group are less uniform, with a high share of individuals using formal settings of care, but also combining formal and informal care. In Mediterranean countries, the provision of informal care, including personal care, plays a much greater role than formal LTC.
This paper critically examines the reliance of formal home-based services upon the availability of informal carers and questions whether the level of informal assistance is sustainable. The paper challenges the 'taken for granted' assumptions of community care and contends that residential care should be seen in terms of a transition - a 'safe harbour' both for recipients and carers. Finally, the paper suggests that the move from containment within institutions to a regime of community dispersion requires critical evaluation of deinstitutionalisation initiatives; and it argues for an engagement of our collective responsibility for the security of our senior citizens.
La Atención de Larga Duración ("Long term care") es la prestada porcuidadores informales (familia, amigos..) o profesionales (serviciossanitarios y sociales)La Dependencia, asociada habitualmente a enfermedades crónicas,provoca a menudo, la necesidad de atención en Residencias o Hospitalesde Larga Estancia, cuando ya no es posible prestar la atenciónadecuada en el domicilio.En pacientes institucionalizados deben realizarse valoracionesestructuradas y sistematizadas de manera periódica (al menos unavez al año), utilizando Instrumentos de medición adecuados y validados,con la finalidad de identificar los problemas y elaborar el Plan deIntervención
The Care Bill was introduced into the House of Lords on 9 May 2013, received its Third Reading on 29 October 2013 and then proceeded to the House of Commons where it received its Second Reading on 16 December 2013. Commons’ Committee stage began on 9 January 2014 and is due to end on 4 February. This Report examines the most significant human rights issues in the Bill.
In this report, the Joint Committee on Human Rights examines the most significant human rights issues in the Care Bill, which must ensure that all providers of publicly arranged or paid-for social care services are bound by the Human Rights Act. The Bill provides an opportunity to fill the gaps in human rights protection for all those receiving publicly arranged or paid-for care, including in their own home and in residential care homes under arrangements made other than under the National Assistance Act 1948. The opportunity to legislate to this effect must not be missed by Parliament. The Committee recommends an amendment to the Bill which would close this significant gap in human rights protection for people receiving publicly arranged or paid-for care. Amendments should be made to either the Care Bill or the Children and Families Bill (debated in the House of Lords on 27 January 2014), to give parent carers of disabled children equivalent rights to a needs assessment for support.
Background: The end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.
Objective: The aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories.
Participants: Thirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services.
Design and methods: This was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10.
Results: Transitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff.
Conclusions: Development of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions.
This paper provides an overview of the GOLD programme at the Foundation for People with Learning Disabilities. It describes the work of the 13 funded projects in a context of wider research concerning ageing and learning disabilities. Particular attention is given to those people living with older family carers and those living in residential services for older people. The picture is of services that offer little confidence for the future, as people with learning disabilities grow older.
Background and aim: While the number of people suffering from dementia in the Netherlands will double in the next 25 years, there are no plans to expand the capacity of residential care facilities for these patients. This will almost inevitably lead to an increase in the burden placed on informal carers. We investigated how caregivers living with a loved one who has dementia experience their caregiving situation.
Methods: For this study, 53 caregivers ranked a structured set of opinion statements covering a representative range of aspects of caregiving. By-person factor analysis was used to uncover patterns in the rankings of statements.
Results: Five distinct profiles of caregiving were identified that provide information on the various care situations that can occur, the needs and dilemmas that these caregivers face, and the subjective burden and perseverance time of the carers.
Conclusions: The findings contribute to the development of interventions for the support of informal caregivers.
This study analyzes the impacts of the Japanese Long-Term Care Insurance (LTCI), a decade after its launch, with respect to the female labor supply in Japan. The radical program has caused the emergence of markets for various care services apart from permanent institutional care, which is only a major formal care sector in many developed countries. The availability of various formal care services can stimulate female labor supply through a reduction of the burden of informal caregiving. To investigate the impacts of the LTCI, we compare the labor market behavior of females who face requirements for elderly care in their household for three periods—before the launch of the LTCI, four years after the launch, and ten years after the launch. Our empirical analysis indicates positive effects of the launch and diffusion of the LTCI on female labor supply. As a result of the LTCI, care for male elders is no longer an obstacle for female labor supply, but care for female elders is still burdensome. We also find that the care requirement reduces the probability of being a regular worker; however, regular workers are more likely to utilize formal care, whereas many nonregular workers provide informal care by themselves.
Care and support is something that everyone in this country will experience and be part of at some point in their lives. Some people have impairments from birth, or develop an impairment or mental health condition during their working life, and use care and support to maintain active and independent lives. Many, as they become older, become more frail and rely on care and support from others. As the Prime Minister’s Challenge on Dementia has already shown, we are committed to improving the lives of people with care needs. This report, and the White Paper and draft Care and Support Bill published alongside this report, are about how we provide high quality care and support for all.
To investigate why older people with high support needs entered residential care and who made that decision. Longitudinal study in three New Zealand cities. Participants: older people (n = 144); (unpaid) caregivers (n = 47); service co-ordinators (n = 12); multidisciplinary team members (n = 4). Questionnaires: InterRAI Minimum Data Set Assessments Home Care; Caregiver Reaction Assessment; Mastery and control. Semi-structured interview questions focussing on decision-making, and concerns that might result in residential care entry. Interviews were at baseline and 6 months, or on entering residential care. Significant factors were found, which increased the likelihood of residential care entry for older people. These included: high scoring dependency on the instrumental activities of daily living (IADL) scale, and an adult child living some distance away. The evidence from the study participant groups highlighted contrasting views about who was important in the decision making about entry to residential care. Older people who had moved into residential care generally thought that doctors had played a key role, whereas family members and professionals tended to consider the move was the caregiver’s decision. Older people with good levels of knowledge about services and support, and good housing, were more likely to continue to live in the community. Policy makers and funders need to understand the importance of clear communication, information and appropriate support services for older people who wish to remain at home, and their caregivers.
The main focus of this paper is the development of an appropriate framework to characterize the process of long-term care utilization by the Dutch elderly. Three broad categories of care services are considered, namely, informal care, formal care at home, and institutional care. The use of these care alternatives is modelled jointly, and stochastic dependence is allowed between the various care options. Special attention is given to the concept of health status and to the potential endogeneity of this variable in the model. We apply a flexible non-parametric method to summarize the multidimensional concept of health status into a limited set of interpretable indices. The model is applied on the Longitudinal Ageing Study Amsterdam (LASA). We find strong effects of health status, gender, socio-economic variables, and prices on the utilization of long-term care services. Copyright © 2000 John Wiley & Sons, Ltd.
This study examined predictors of older adults' and primary caregivers' willingness to use formal long-term care (LTC) services to understand possible use patterns of mandatory public LTC insurance programs in Korea. It focused on views regarding who (adult children or the government) should bear the responsibility for older adults' care. Logistic regression models were estimated using data from 1,168 older Korean adults aged 65 or older and their primary caregivers from a national survey. The results showed that older adults' and their caregivers' views on care responsibility were a dominant predictor of their willingness to use both formal home care services and nursing home care services. Both older adults and their family caregivers' willingness to use LTC services should be considered when predicting demand for LTC services. Efforts should promote the perspective that formal LTC services are an acceptable social norm.
The update reports on an action research project which aimed to identify how best to support older family carers and their relatives with learning disabilities plan for a transition from living together in the family home. It found that there are eight distinct stages to this process. Moving on takes time and sensitivity on the part of services and workers. The process must develop at a pace and in a way that retains the confidence of the family carers. Firm plans are only realistic where a move is imminent. Where this is not the case preparation work is still vital. 3 refs. [Summary]
Background: Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking.
Aim: To compare the effects of the Liverpool Care Pathway for the Dying Patient and usual care on patients’ symptom distress and well-being during the last days of life, in residential care homes.
Design: Exploratory, controlled before-and-after study. During a 15-month baseline, usual care was carried out in two areas. During the following 15-months, usual care continued in the control area, while residential care home staff implemented Liverpool Care Pathway for the Dying Patient use in the intervention area. The intervention was evaluated by family members completing retrospective symptom assessments after the patient’s death, using the Edmonton Symptom Assessment System and Views of Informal Carers – Evaluation of Services.
Settings/participants: Patients who died at all 19 residential care homes in one municipality in Sweden.
Results: Shortness of breath (estimate = −2.46; 95% confidence interval = −4.43 to −0.49) and nausea (estimate = −1.83; 95% confidence interval = −3.12 to −0.54) were significantly reduced in Edmonton Symptom Assessment System in patients in the intervention compared to the control area. A statistically significant improvement in shortness of breath was also found on the Views of Informal Carers – Evaluation of Services item (estimate = −0.47; 95% confidence interval = −0.85 to −0.08).
Conclusion: When implemented with adequate staff training and support, the Liverpool Care Pathway for the Dying Patient may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings.
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.
In Portugal, individuals aged 50+ have an important role in the provision of co-residential care. This study aimed to rank Portugal relative to 15 European countries with regard to the prevalence of co-residential care (daily or almost daily personal care), and extra-residential help/care (household help and/or personal care) provided by individuals aged 50+, and determine the factors associated with the provision of these types of support in the Portuguese context. The study used data from the SHARE wave 4 project (2010–2011) and was based on an analysis of variance and logistic regression models. Portugal differs from other European countries, as it has the highest rate of co-residential care (12.4 %) and the lowest rate of provision of extra-residential help/care (10.8 %). It is concluded that the quality of life (QoL) of Portuguese co-residential carers is lower than the QoL of non-carers, but extra-residential help/care provided once a month or less has a positive impact on the QoL of the providers. Co-residential care and the provision of frequent extra-residential help/care (daily or weekly) were associated with a higher number of depressive symptoms. The results further showed that, in Portugal, co-residential carers and extra-residential helpers/carers have different socio-demographic, economic and health characteristics. This study demonstrates that it is important for scientific research to differentiate the type and frequency of informal support, since this can help us design policies to meet the specific needs of the various types of informal carers aged 50+.
BACKGROUND: Primary research, including qualitative research, as well as experts working in social services and aged care have identified the mixed feelings carers experience when the person they have been caring for is admitted into a residential aged care facility permanently. They have raised the importance of understanding these experiences as a means to implementing policies and programs that enhance carers' well-being. This systematic review was motivated by the need to use evidence to inform effective and feasible interventions to support carers, and the absence of a systematic review synthesizing the qualitative evidence on how carers experience this transition.
OBJECTIVES: The objective of this qualitative systematic review was to identify and synthesize the evidence on the experiences of carers of older people when the person they had been providing care for is admitted permanently into a residential aged care facility, and to draw recommendations from the synthesis of the evidence on these experiences to enhance policy and programming aimed at supporting affected caregivers.
INCLUSION CRITERIA: TYPES OF PARTICIPANTS: All carers of people who had experienced the person they had been caring for at home being moved into a residential aged care facility permanently. PHENOMENA OF INTEREST: Experiences of the caregiver of the older person when the person they have been caring for at home is admitted into a residential aged care facility permanently. TYPES OF STUDIES: The review considered qualitative studies, including but not limited to designs such as phenomenology, grounded theory, ethnography and action research. TYPES OF OUTCOMES: The outcomes are in the form of synthesized findings pertaining to carers' experiences when the person they have been caring for is admitted into a residential aged care facility permanently.
SEARCH STRATEGY: A comprehensive search of leading databases which are sources of qualitative published and unpublished studies was conducted between 18 September 2013 and 10 November 2013. The search considered studies reported in English and published from the database inception to 10 November 2013.
METHODOLOGICAL QUALITY: Papers selected for retrieval were assessed by two independent reviewers for methodological validity prior to inclusion in the review using the Joanna Briggs Institute Qualitative Assessment and Review Instrument. DATA EXTRACTION: Data were extracted from identified papers using the standardized data extraction tool from the Joanna Briggs Institute Qualitative Assessment and Review Instrument. The data extracted included descriptive details about the phenomena of interest, populations and study methods. DATA SYNTHESIS: The Joanna Briggs Institute meta-aggregative approach for synthesizing qualitative evidence was used. Research findings were pooled using the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Study findings that were supported by the data in primary studies were organized into categories on the basis of similarity of meaning. These categories were then subjected to a meta-synthesis to produce a set of synthesized findings.
RESULTS: Fourteen studies matched the inclusion criteria and were included in the review. From these 14 studies a total of 71 study findings about how carers experience the transition when the person they have been caring for is TRUNCATED AT 500 WORDS.
The objective of this review was to assess the effectiveness of interventions that assist caregivers to provide support for people living with dementia in the community. Adult caregivers who provide support for people with dementia living in the community (non‐institutional care). Interventions designed to support caregivers in their role such as skills training, education to assist in caring for a person living with dementia and support groups/programs. Interventions of formal approaches to care designed to support caregivers in their role, care planning, case management and specially designated members of the healthcare team – for example dementia nurse specialist or volunteers trained in caring for someone with dementia. This review considered any meta‐analyses, systematic reviews, randomised control trials, quasi‐experimental studies, cohort studies, case control studies and observational studies without control groups that addressed the effectiveness of interventions that assist caregivers to provide support for people living with dementia in the community.
This code provides guidance to the Part 4 and 5 of the Social Services and Well-being (Wales) Act 2014, in relation to direct payments, choice of accommodation, charging and financial assessment. The Act establishes that local authorities can exercise the discretion to charge for the provision of care and support, or to require a contribution or reimbursement, where they feel it is appropriate to do so and where they have established that the person required to pay any charge, contribution or reimbursement, has sufficient financial means to do so. The code covers: designing a charging policy; common issues in relation to charging; charging for care and support in a care home; choice of accommodation when arranging care in a care home; making payments for additional costs for preferred accommodation; charging for care and support in the community; and charging for support to carers.
The Law Commission’s Tenth Programme of Law Reform includes a project to review adult social care law in England and Wales. The Department of Health is the lead department for this project. The first stage of the project is to undertake a scoping review of adult social care law and to publish a report setting out the proposed agenda for the substantive project. This summary provides a brief overview of the areas of reform identified in the Scoping Report and the direction of our review in each area.
A study by the National Institute for Social Work suggests that estimates can be made about the length of time that a person with dementia will need community and long term care services. This can be done based on an assessment of the severity of dementia at the time of the community care assessment. The author highlights the need for an appraisal of local old age psychiatry services and eligibility criteria, and the importance of monitoring carers' ability and willingness to provide care.
This paper is concerned with the issue of substitution between formal and informal care in Britain between 1985 and 2000. This period provides the conditions for a ‘natural experiment’ in social policy. During the late 1980s/early 1990s, there was an increase in long-stay residential care for older people, which came to an end around the mid-1990s. The paper examines whether this increase in formal services led to a decline in informal care, and whether this was subsequently reversed. The focus is on provision of intense informal care by adult children to their older parents, trends in which are identified using General Household Survey data. The paper shows that there was a decline in provision of intense and very intense co-resident care for older parents between 1985 and 1995, which came to an end in the mid-1990s. These trends in intergenerational care were negatively related to changes in long-stay residential care. In particular, controlling for age and disability, there was evidence of substitution between nursing home/hospital care and very intense co-resident care for older parents. A key policy implication is that an expansion of very intense formal services for older people could bring about a decline in very intense intergenerational care. The paper relates these findings to the current debate on reform of the long-term care system in England.
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.
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.
Payments for care, by which people in need of long-term care directly employ care workers, have been introduced in many European countries. In The Netherlands, care dependants are allowed to use these payments to hire relatives to perform care tasks. Care-givers who are employed by their relatives are in a hybrid position, because they are contracted as employees in the informal setting of a family home and its affective care relationships. This paper reports a qualitative study of relatives' experiences of payments for care and how these affect their care-giving. In-depth interviews were undertaken with 17 paid carers: they were asked to respond to three fictional vignettes of contrasting care trajectories. It was found that the cash nexus had mixed and partly contradictory implications for the paid care-givers. On the one hand, the care-givers were satisfied with the arrangement, as the payments recognised and raised their status as carers, and were seen as reward and reciprocation for their care work. Some carers had found that the contract helped manage strained relationships, by enabling a clearer differentiation of care tasks from affection. On the other hand, some who regarded themselves as employees and saw their role as equivalent to formal carers felt a greater obligation to provide high-quality care, and found that they were thanked less often and received fewer tokens of gratitude.
The aim of the present paper was to examine some views and experiences of dementia among older South Asian people, as well as their families and carers, and to explore central issues of service support. Data were collected in Scotland through interviews with 11 professionals working with South Asian people with dementia, and four case studies of South Asian people with a diagnosis of dementia, as well as their families and carers. The case studies demonstrated overwhelmingly negative experiences of dementia, with poor quality of life, desperate needs for support, lack of access to appropriate services, little knowledge of dementia, and isolation from community and family life. The interviews with professionals described a strong demand for services, a need to develop awareness and knowledge about dementia in South Asian communities, and a need to promote more culturally sensitive, individually responsive services. Similarities between South Asian people and the non-South Asian population include stress on carers, increasing isolation, problematic diagnostic practices, lack of knowledge and demand for service support. Differences include limited use of non-National Health Service (NHS) support, dealing with later stages of dementia at home, particularly negative views about residential care, culturally based attitudinal differences and use of the term 'dementia' in English as neutral rather than stigmatising. The present authors suggest that there is little knowledge and experience of dementia in South Asian communities, as well as restricted access to appropriate services, despite the efforts of voluntary sector and NHS special projects. There is demand for services, especially at home. Services need to develop individual responsiveness for effective working in a diverse society.
More than 40% of the respondents in the British Household Panel Survey provide informal care at least for one year within the period 1991-2003 and carers are usually less likely to hold simultaneously a paid job. There is little evidence on the mechanism that links informal care provision and labour market outcomes. This paper provides evidence on the pathways through which this pattern arises using a multivariate dynamic panel data model that accounts for state-dependence, feedback effects and correlated unobserved heterogeneity. We find evidence of a causal link from informal care to employment with employment rates reduced by up to 6 percentage points. However, this effect is only found for co-residential carers who account for one third of the population of carers and less than 5 percent of the overall labor force. For the same group, a significantly smaller link from employment to care provision is found. A micro-simulation exercise using the model estimates suggest that the overall potential pressure on the provision of informal care created by a rise in the employment rate is minimal.
Written from an American perspective, this book tackles head on the powerful myths and discriminatory attitudes that underlie one of the unspoken moral disasters of contemporary life: that so many older people die, before their time, cut off from their family and their homes, unhappy and alone.
Drawing on the author's professional expertise as an independent living consultant and a decade of caring for his mother, the book offers down to earth, practical advice aimed at keeping elderly parents in their own homes for as long as possible. Having identified eight key elder care support 'rules', it explains how best to gauge the type and level of support required by an elderly parent covering both physical and psychological needs. Placing a strong emphasis on the quality of life, it describes how to avoid common assumptions about old age, how to determine what is 'normal' and 'abnormal' for the parent concerned and when and how to intervene. It describes the importance of forward planning in connection with financial and health matters and briefly describes arrangements such as the power of attorney, living wills and advance healthcare directives.
Background: Short-term residential care (SRC) has proved to be effective in reducing the burden on family caregivers of dementia patients. Nevertheless, little is known about the factors which influence its usage or the expectations of family caregivers regarding quality. In this paper we address the following questions: (i) which variables of the care situation, the caregivers and their attitudes act as predictors for the utilization of SRC facilities? (ii) What are the views of caregivers about the quality of SRC?
Methods: The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in four regions of Germany. With a 20% response it was possible to analyze the quantitative and qualitative data from 404 and 254 family caregivers respectively. Predictors for utilization were evaluated using binary logistic regression analysis. The answers to questions of quality were evaluated using qualitative content analysis.
Results: Significant predictors for the utilization of SRC are the assessment of the helpfulness of SRC and the caregiver's knowledge of the accessibility of SRC facilities. Family caregivers who had already used SRC most frequently expressed the wish for “good care” in SRC facilities, followed by a program of suitable activities for dementia patients.
Conclusions: In order to increase the rate of utilization, family caregivers must be convinced of the relevant advantages of using SRC facilities. The staff should be trained in caring for dementia patients and appropriate activities should be available.
Background: Well coordinated and integrated home based care is an efficient and cost effective model for providing long term care. There is, however, emerging evidence to suggest that family members pay a price for taking on long term care responsibilities at home.; Objective: This article draws on published literature to provide an overview of the health, economic, and social issues faced by informal carers. The objective is to contribute to the knowledge base of clinicians about the impact of chronic disease and disability on families taking on the care responsibility in a home environment, thereby informing the delivery of best practice.; Discussion: In 2006, there were approximately 632,694 primary carers aged 15 years or more in Australia. These carers collectively have the lowest level of wellbeing scored by any group, and compared to the general population have a significantly higher level of depression, were more likely to experience physical pain, and more likely to experience financial stress. Failure by clinicians to recognise the burden on informal carers may result in long term adverse outcomes for this group that may outweigh the benefits of managing people with disability and chronic illness in the community.
This paper reviews the challenges faced by unpaid family carers and the current support and services available to them. It argues that current carer support should be built on and presents the evidence for doing so, including evidence of the opportunities to make substantial savings in residential care costs. The paper suggests a new way in which proposed resource allocation and personal budget systems could be developed in order to sustain caring, avoiding the risk of a new perverse incentive to families to end caring roles. The paper provides some modelling of the costs and benefits of this approach.
Background: This study aims to build a measure for assessing and reviewing the living conditions, care and human rights of people with longer term mental health problems in psychiatric and social care institutions. Protection of their human rights is imperative since impaired mental capacity secondary to mental illness can make them vulnerable to abuse and exploitation from others. They also constitute a major resource pressure for mental health services, social services, informal carers and society as a whole.
Methods/Design: domains are identified by collating results from: i) a systematic review of the literature on institutional care for this service user group; ii) a review of the relevant care standards in each participating country; iii) Delphi exercises in partner countries with mental health professionals, service users, carers and advocates. Common domains and cross-cutting themes are agreed by the principal researchers and an international expert panel. Items are developed to assess these domains and incorporated into the toolkit which is designed to be administered through a face to face interview with the institution's manager. The toolkit is refined in response to inter-rater reliability testing, feedback from interviewers and interviewees regarding its utility, and feedback from key stakeholders in each country about its ability to deliver information that can be used within each country's established systems for quality assessment and review. Cross-validation of the toolkit ratings against service users' quality of life, autonomy and markers of recovery tests whether it can deliver a proxy-measure of the service users' experiences of care and the institution's promotion of their human rights and recovery. The ability of the toolkit to assess the "value for money" delivered by institutions is investigated by comparing toolkit ratings and service costs.
Discussion: The study will deliver the first international tool for the assessment of the quality of institutional care for people with longer term mental health problems that is accurate, reliable, informative, useful and easy to use.
To establish the best approach to develop a quality of life (QoL) questionnaire for cancer-patient caregivers, this study attempts to identify primary domains of QoL in terms of their impact on a purposive sample of caregivers. Seventy-seven informal adult caregivers of cancer patients (breast cancer, paediatric haematological malignancies or melanoma) with different relationships with the patients (parents, children, spouses, siblings, and friends) were recruited at three specialised French centres and extensively interviewed. Caregivers' lives were altered in several domains: psychological well-being, leisure and everyday activities, relationships with institutional caregivers, occupation and finances, relationships with family and friends, physical well-being, and relationship with the patient. The relative importance of these domains varied mainly in association with the caregiver-patient relationship. Multiple correspondence analysis identified two isolated clusters: children, and, most significantly, friends and siblings. The latter groups emphasised the repercussions on their psychological well-being and their relationship with the patient, but were less willing to discuss the impact on their relationship with caregivers and on occupation, finances, leisure, and everyday activities. This study focuses on the caregiver's perspective and advocates the development of a short QoL core questionnaire. Additional modules should be cancer-specific or dedicated to specifics of the caregiver-patient relationship.
This paper analyzes the dynamics in employment and informal care outcomes of women in England. To this end, we develop a dynamic model to describe pathways leading to a negative correlation between informal care and employment in a cross-section. The model allows for different types of caregiving, correlated permanent unobserved heterogeneity and initial sorting. The model is estimated on data from 6 waves of the BHPS 2000–2005. Our findings suggest modest feedback effects. We find a negative effect of co-residential caregiving on future employment and a negative effect of employment on future co-residential and extra-residential caregiving. We also find evidence of positive state-dependence in caregiving although most of the persistence in such activities is related to unobserved heterogeneity rather than state-dependence.
The economic and social burden of dementia on society is the value of all the resources used to prevent, diagnose, treat, and generally cope with the illness. This article assess the overall resource implications of dementia in Ireland. Six main areas are covered in the cost analysis as follows: mortality and life years lost, in-patient acute care, in-patient psychiatric care, residential long-stay care, family care, and primary and social care in the community. The critical role of carers in maintaining people with dementia in their own home is reflected in the results showing that family care accounts for almost 50 percent of the overall resource burden, based on an opportunity cost valuation of carer time.
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.
The impact of funding systems on the IT systems of providers has been enormous and have prevented the implementation of designs to focused on the health issue of patients. The paradigm shift the Dutch Ministry of Health has taken in funding health care has a remarkable impact on the orientation of IT systems design. Since 2007 the next step is taken: the application of the funding concept on chronic diseases using clinical standards as the norm. The focus on prevention involves the patient as an active partner in the care plan. The impact of the new dimension in funding has initiated a process directed to the development of systems to support collaborative working and an active involvement of the patient and its informal carers. This national approach will be presented to assess its international potential, as all countries face the long term care crisis lacking resources to meet the health needs of the population.
Statistics on service provision in Scotland to older people, people with learning disabilities, people with mental health problems, disabled people, carers and other users. Provides figures on domiciliary care, day care , residential care, private nursing homes, hospitals and special needs housing for each user group.
The film is introduced by the manager of a residential care home for older people with dementia who talks about the importance of understanding the individual, their interests, background and personal history. The benefits of this approach are illustrated by Marjorie’s story. Marjorie has been supported and encouraged to take up her interest in music again and it has brought pleasure to her life. There is an emphasis on relationship-based, individual person-centred care, rather than a functional approach to basic personal care. This is important to maintaining dignity and well-being. The latter half of the film looks at the family and carer support that the service also provides as part of person-centred care.
The instrument amends regulations 9 and 10 of the Community Care, Services for Carers and Children’s Services (Direct Payments) (England) Regulations 2009 to lift the requirement on local authorities to carry out a financial assessment when determining what amount is reasonably practicable for the direct payment recipient to pay towards securing the provision of residential accommodation.
Aim: To understand the perceived factors that shape decision-making around the time of residential care admission in older people.
Method: Two qualitative methods (telephone interviews at intervals post discharge from geriatric inpatient care and face-to-face interviews with older people and their family carers) were used as part of a multiphase mixed methods study of a cohort of 144 older people discharged from medical wards in a subacute assessment, treatment and rehabilitation facility.
Results: Key topics and themes were derived from interviews: the role of the informal carer and other community supports, attitudes to decision-making and loneliness were key aspects of social context. Physical health, the experience of repeated hospital admissions and health professionals' attitudes to repeated admissions were also seen as important.
Conclusions: Social context as an essential component of older people's decisions to enter aged residential care is highlighted in this qualitative study.
Aims to provide standards for long term care in South Tyneside, covering issues such as provision of information, assessment and care planning, housing, independence, health care, benefits and complaints procedures.
This article presents the key findings from a collaborative study about the experiences and support needs of carers whose relatives are admitted into a nursing or residential care home. Drawing upon data from carers' qualitative accounts, it considers carers' post‐admission roles, responsibilities and profiles, and the contribution carers make to the continued care of their relative. Carers' post‐admission caring experiences are described in detail and differences between spouse carers and carers involved in looking after a parent are identified. A temporal model depicting the complex and dynamic nature of carers' postadmission experiences is presented. The implications for policy and practice are discussed.
An aging population is often taken to require a profound reorganization of the prevailing health care system. In particular, a more cost-effective care system is warranted and ICT-based home care is often considered a promising alternative. Modern health care devices admit a transfer of patients with rather complex care needs from institutions to the home care setting. With care recipients set up with health monitoring technologies at home, spouses and children are likely to become involved in the caring process and informal caregivers may have to assist kin-persons with advanced care needs by means of sophisticated technology. This paper investigates some of the ethical implications of a near-future shift from institutional care to technology-assisted home care and the subsequent impact on the care recipient and formal- and informal care providers.
Aims. This paper reports a study to investigate the relationships between informal and formal care, changing relationships over time, impact of integrated care, and theoretical and methodological lessons that can be drawn from research on this topic.
Background. The ratio of informal to formal care provided in nursing homes varies. In many countries the predominance of traditional, formal care is being challenged by the emergence of integrated care models in which formal and informal caregivers co-operate and co-ordinate their activities to deliver tailor-made care. This move towards integrated care is likely to result in changes in the degree and nature of involvement of formal and informal caregivers in care activities. However, very little research has investigated this. Previous research is restricted to one point in time, as opposed to focussing on the changing relationships between formal and informal caregivers over time.
Methods. The quasi-experimental design encompassed a traditional care comparison setting and an experimental setting with an integrated care intervention. At three measurement points, one before the intervention in May/June 2000 and two at 6 and 14 months after the intervention, informal and formal caregivers recorded their care activities. Informal care relationships were determined by calculating contribution rates and informal/formal care ratios for 14 activities.
Results. Integrated care did not bring about the expected major changes. There was a limited amount of substitution of formal care with informal care. There were limited changes in the extent of dual specialization, in which informal and formal caregivers perform separate activities. There was little supplementation of formal care with informal care. Furthermore, relationships changed over time, resulting in a complex pattern of linkages at the level of separate activities.
Conclusions. Informal caregivers contribute to many activities. The impact of integrated care on the degree and nature of involvement, however, was moderate. A possible explanation is the contextual situation for nursing home care. These findings point to the need for further research into the (changing) relationship between formal and informal carers in residential care activities and the evolution of this relationship over time.
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.
Medicare home health care policy does not incorporate research evidence of effective palliative home care interventions for Alzheimer's disease and dementia patients and caregivers. This article examines the dissonance between the needs and burdens of Alzheimer's disease patients and caregivers, research results on medical and palliative care interventions, and medicalized public policy in the Medicare home health benefit. The article asserts existing research establishes a prima facie case exists for the federal government to fund a Medicare Palliative Home Care for Alzheimer's disease demonstration project. The article cites the success of the Medicare Hospice Demonstration project and Hospice Medicare Benefit in reducing costs and improving client quality of life as precedent and a model for Alzheimer's disease. Other research implications are identified.
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.
Behavioural and psychological symptoms of dementia (BPSD) are common and problematic in clinical practice and represent a significant part of the day-to-day workload of the old age psychiatry team in hospital, institution and community settings. Improving recognition and management of BPSD can have a positive impact on the quality of life of patients and their carers and potentially delay the transition from home to institutional care.
This paper examines key challenges and strategies for including older people with dementia in an ethnographic study of quality of life in institutional care settings. The methods of interview and observation are described in relation to meeting four research challenges: verbal communication impairment, memory loss, decision-making capacity, and emotional disposition. A range of strategies for privileging the voice of the person with dementia is recommended which include: using different methods be spoke to each person with dementia; greater flexibility and time; preliminary meetings with the person with dementia; discussions with formal and informal carers; and research training. The researchers also conclude that the use of observation and interview are 'meaning-making occasions' which are qualitatively different but equally valuable for understanding quality of life in care settings.
A project to review the law relating to the provision of adult social care in England and Wales. The legislative framework for adult residential care, community care, adult protection and support for carers is inadequate, often incomprehensible and outdated. It remains a confusing patchwork of conflicting statues enacted over a period of 60 years. There is no single, modern statute to which service providers and service users can look to understand whether (and, if so, what kind of) services can or should be provided. The overall aim of the project is to provide a clearer and more cohesive framework for adult social care. This would help to ensure that service users, carers, social care staff, health professionals and lawyers are clear about rights to services and which services are available. It will also aim to modernise the law to ensure that it is no longer based on out-dated principles. The first phase of this project will be a scoping report. This will aim to delineate clearly the scope of the project and provide it with a detailed agenda for reform.