Exemplar models and support for older carers and carers of people with dementia: informing commissioning

In May 2017 NHS England commissioned a project to support its Commitment to Carers programme. The focus of the work was to scope exemplar models of support for older carers, and for carers of people with dementia (of any age). The work took place between May 2017 and March 2018, and included a consultation workshop in February 2018. A full report of the findings is available, but this brief summary has been prepared primarily to give feedback to the people who contributed to the project and shared their experience with us. Our conclusions and recommendations should inform the further development of NHS England’s Commitment to Carers, but more widely they also point to gaps in which new approaches might be further developed and tested, building on the experiences and exemplars discussed

Exemplar models and support for older carers and carers of people with dementia: informing commissioning: Executive Summary

In May 2017 NHS England commissioned a project to support its Commitment to Carers programme. The focus of the work was to scope exemplar models of support for older carers, and for carers of people with dementia (of any age). The work took place between May 2017 and March 2018, and included a consultation workshop in February 2018. A full report of the findings is available, but this brief summary has been prepared primarily to give feedback to the people who contributed to the project and shared their experience with us. Our conclusions and recommendations should inform the further development of NHS England’s Commitment to Carers, but more widely they also point to gaps in which new approaches might be further developed and tested, building on the experiences and exemplars discussed

Seeing the wood for the trees. Carer related research and knowledge: A scoping review

This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference

Caring in the 21st century: research evidence and knowledge generation

The collection of papers in this Special issue reflect a number of the key dimensions of carer-related research more widely. Carer related research is characterised by a range of different methodologies and focuses on different groups of carers caring in a range of contexts. Research relating to the impact and efficacy of policy and to the translation of policy aims into front line practice is also a longstanding feature of research in the carers field. A commitment to capturing carers’ experiences and lives and recognition of the very different needs and profiles of carers is also an enduring dimension. In addition this Special Issue includes papers presenting original research from Ireland and Canada and literature reviews that draw on international evidence this is indicative of the increasing visibility of care related issues on the international stage. The papers also highlight a number of the tensions that underpin research on carers and caring. Responses to addressing ‘barriers’ to help seeking and service uptake often require investment of public resources. At a time when more is expected of carers and less is being provided by health and social care services this may be unrealistic. It is important to recognise that carers assessments are being conducted in a context where local authorities in England are raising their eligibility thresholds and reducing access to services. How far a practitioner can offer help in an environment of severe cost constraint is therefore a significant challenge. A third issue relates to who is the focus of research. Most research on carers is done with those who define themselves as carers. What we do know is that as many as half of those who actually ‘do caregiving’ do not view themselves as a carer and as such, tend to be marginal to the purview of research (Lloyd 2006). The groups most ‘in need’ of recognition and support are often those least likely to come forward for help or seek out a ‘carer’ related service. A single collection of papers can only ever ‘represent’ a small part of the multi-dimensional, heterogeneous, diverse, and shifting population that constitute carers. However, it does showcase the potential of research to capture carers’ experiences and lives, to expose the impact of cuts to services and the challenges of implementing policy change, explore the role of assessment and support services, and challenge the research community to review how it generates knowledge and develops understanding about carers, care and caring

The carer-related knowledge exchange network (CAREN): enhancing the relationship between research and evidence and policy and practice

Background: Although there is now an extensive international body of research and evidence about care and carers it is fragmented and disparate. Without synthesis, organisation and accessibility it cannot effectively inform and improve policy and practice with carers. Key points for discussion: This paper makes the case for an accessible carer-related research and evidence resource for stakeholders in carer-related domains across policy, practice, research to address this systemic deficit in the carers field. The Carer-related Knowledge Exchange Network (CAREN) has recently been established in recognition of this case. This timely resource is a freely accessible knowledge exchange network that provides relevant stakeholders (for example, carers, commissioners, policymakers, practitioners, employers, third sector organisations, researchers and research funders) with access to a regularly updated and coherent database of carer-related research and evidence; offers interactive opportunities to exchange and generate knowledge; facilitates links and information sharing; and disseminates innovative practice, interventions and services. CAREN’s development, dimensions and functionality are outlined. In addition, the paper identifies and explores the challenges of sustaining CAREN and its further development – namely long-term funding and ensuring that it meets the needs of its many and diverse users. Conclusions and implications: It is anticipated that CAREN will make a significant contribution to research, policy development and service and practice improvement with carers, and will enhance the effectiveness of its stakeholders’ activities. The realisation of CAREN’s potential will ensure that it can, and continues to, make a significant, sustained and cost-effective contribution to addressing a critical global issue of the 21st centur

Caring in Kent: Patterns and Profiles, Evidence from the Kent Health and Lifestyle Survey, 2005

The ‘Caring in Kent’ report draws on the results of a Kent wide ‘Health and Lifestyle Survey’ conducted in 2005; this included a module on caring. This enables a picture of caring to be reported including: a general profile of carers, levels and types of care-giving, carers’ health, and the level and types of support they receive. ‘Carers provide unpaid care by looking after an ill, frail or disabled family member, friend or partner’. The increasingly recognised importance of the role of the ‘informal carer’ is - in good part - due to the rising proportion of older people in the UK population. Not only do people live longer but many experience a number of chronic conditions; these require support from family members if the older person is to remain living in the community

Including Family Carers: Adding Value and Impact to Research

As family carers we are not a homongeneous group but come in all shapes and sizes, and play an invaluable role in society. We have a variety of experiences, and expertise in the needs of the person or people we care for or have cared for as well as our own experiences of being carers. Across the diverse group of carers and caring situations, we each have our own individual voice which may differ from that of the person we care for. Yet, in research studies our voices are sometimes excluded or only sought when the cared for person is unable to give their own views. The focus on services or the cared for person can sometimes ignore the experience and expertise carers bring to an issue. Often the symbiotic nature of the caring relationship is not recognised; so when the focus is on interventions for the cared for person the resulting impact on their carers is overlooked. There is no doubt that more research is needed on the role, needs and support for carers. But ther is also no doubt that the voice of carers needs to be captured across all health and social care studies even when the focus is on the cared for person. This report, from a workshop organised by the Independent Advisory Group on Carers and the NIHR School for Social Care Research, highlights the pivotal role carers play in the effectiveness of future health and social care-related research. Carers can be valuable partners, providing unique inputs into all stages of research design, from forming the research question to the methodology, analysis and in sharing the findings. Our voice as carers needs to become an integral part of all health or social care-related research studies. There are actions that research funders, research teams, the health and social care sectors, and carers can take to make this happen. This report highlights some of these but it is important that actions follow. The first step is to recognise carers as a distinct, diverse and valuable group in research. We welcome positive steps being taken to achieve the priorities set out in this report