Yorkshire & Humber Improvement Academy Support for Dementia Carers Scoping Report January 2014 For further information, please contact Kirste Mellish, Programme Manager, Improvement Academy kirste.mellish@bthft.nhs.uk, 01274 383925, http://www.yhahsn.org.uk/improvement-academy/ Version Control Version Date Author Description 5 January 2014 Val Rhodes, Project Manager, Improvement Academy, Director InRhodes Consultancy Ltd A brief scoping and collation of relevant policy documents, research and findings from stakeholders across the Yorkshire & Humber region along with recommendations for the future direction of the dementia carers work stream.
Contents 1 Executive summary...3 2 Introduction..4 3 National policy drivers 5 4 The evidence base for the need to support carers... 6 5 National, regional and local data on carers.....8 6 Findings - themes, good practice, challenges and identified gaps....11 7 Conclusions and Recommendations.......19 References.25 Appendices..26 Abbreviations ADASS Association of Directors of Adult Social Services BME Black and Minority Ethnic CCG Clinical Commissioning Group DH Department of Health NICE National Institute for Health and Care Excellence ONS Office for National Statistics SCIE Social Care Institute for Excellence SWYFT South West Yorkshire Foundation Trust Y&H Yorkshire and Humber Page 2 of 27
1 Executive Summary This report summarises the findings of a scoping exercise to identify the priority support issues for dementia carers across Yorkshire and Humber (Y&H). The aim was to identify existing levels of support, areas of good practice and shared challenges and gaps. The findings from the scoping exercise were developed into key themes which were reviewed as potential areas of improvement that could be supported by the Y&H Improvement Academy. The scoping process included a limited review of relevant policy and research literature and discussions with key stakeholders across the region. The stakeholders were from a range of organisations including 3rd sector, academia, mental health and acute NHS trusts, Local Authorities and dementia related organisations. The Innovation Health and Wealth report (DH, 2011) identifies the support to carers of people with dementia as one of its priority areas. National policy and guidance for both dementia and carers states the importance of supporting carers to a) be able to care effectively b) have involvement in the care of the person with dementia and c) be supported to remain mentally and physically healthy. The impact of caring upon individuals is well documented and evidence shows a marked difference between the health of those who identify themselves as having caring responsibilities against those who do not. The findings of the stakeholder meetings showed that all localities provided a range of carer support services and had some infrastructure in place to engage and involve carers. Examples of engagement were seen at dementia strategy boards, carer forums, dementia needs assessments and in the planning and delivery of services. Existing regional dementia and carer forums are used to share good practice and find joint solutions to challenges; nearly all those interviewed connected into a regional forum and were positive about their effectiveness to support improvements. From the stakeholder discussions there emerged the following eight themes: 1. Communications with dementia carers in hospital settings 2. Post diagnostic support and sign posting 3. Identifying carers 4. Information for carers on available support 5. Evaluating outcomes and impacts of support interventions for carers 6. Developing informal support systems 7. Working carers 8. Identifying the health needs of carers Based on challenges being identified by all stakeholders, lack of region-wide development and the positioning of the Improvement Academy to provide support, it is recommended that the Improvement Academy focuses its future support on improving access to appropriate information for carers. Recommended next steps include: 1 To pursue the possibility of commissioning an Effectiveness Matters paper on the best way to ensure carers get access to timely and appropriate information. 2 To connect into the existing regional networks to explore the possibility of facilitating a regional event on improving access to information for carers getting the right information at the right time in the right way. Page 3 of 27
2 Introduction The Improvement Academy was established in 2013 and forms a part of the Y&H Academic Health Science Network (AHSN). It aims to: Reduce unwarranted variation in outcomes of care Co-create improvements with clinicians, patients and the public Embed evidence-based solutions into routine practice Bring about lasting change Reduce professional and geographical isolation The Improvement Academy has a number of current projects focused on the high impact innovations described in the Innovation Health and Wealth report (DH, 2011). One of the projects has a focus on the support needs of carers of people with dementia across the Y&H region. The aim of the scoping report was to identify what was available to dementia carers across the Y&H region in terms of support, examples of good practice and the gaps and challenges faced by the stakeholders interviewed. The scoping work took place between November 2013 and January 2014 and involved: A limited review of relevant policy documents and research literature. Discussions with key people in the Y&H health community, including 3 rd sector organisations, community services, mental health and acute trusts and local authorities to identify the range of support services available to carers, sign posting, access and the identified gaps and challenges. The collation of key themes from the discussions along with findings from policies into a scoping report and recommendations for the Y&H Improvement Academy. A number of meetings took place with key stakeholders across a range of organisations in the Y&H region (see appendix 1). Due to limited timescales it was not possible to meet with stakeholders representative of all services involved in supporting carers or of the many geographical localities. Therefore the initial stakeholders were selected by service type e.g. academia, NHS trusts, councils, dementia organisations, 3 rd sector services and those with a regional remit for dementia. Due to the large geographical nature of the Y&H region, the stakeholders initially interviewed were existing Y&H Improvement Academy contacts as these were immediately accessible. These broadened as organisations or individuals were recommended by the stakeholders in the interviews. This resulted in the stakeholders involved being based mostly in the regions of Bradford, York, Wakefield, Kirklees and Hull. The interviews lasted between 1-2 hours and a standard question template was used for consistency of the information gathered (see appendix 2). Page 4 of 27
3 National policy drivers Department of Health; Innovation Health and Wealth report (2011) Innovation Health and Wealth informs the strategic approach to innovation in the NHS and it seeks to drive healthcare innovations that change patient pathways and traditional delivery systems. The Department of Health has identified a number of high impact innovations that are considered as being able to deliver game-changing improvements and one of these includes the provision of support to carers for people with dementia. The report estimates that there are 600,000 people in the UK acting as primary carers for people with dementia and that the cost of caring is significant. Carers save the public purse 6 billion every year and without the provision of carers the pressure on health and care systems will continue to grow. There is an expectation that the NHS commissions services in line with the NICE- SCIE guidelines on supporting people with dementia (see below). NICE-SCIE Guidance; Supporting people with dementia and their carers in health and social care (2006) The guidance is for health and social care staff who work with people with dementia and their carers and covers the identification, treatment and care of people with dementia and the support and interventions that should be provided to their carers. The guidance states that all carers should be offered access to an assessment which identifies any psychological distress and the psychosocial impact of caring. The assessment should be an on-going process and should include any period after the person with dementia has entered residential care. Carers should have access to education and training courses, peer support, a range of information in varying formats, transport, short breaks, day care, night sitting and involvement in the care of the person with dementia. They should also be offered psychological therapy including cognitive behavioural therapy. Department of Health; Recognised, Valued and Supported Next Steps for the Carers Strategy (2010) This builds on the Caring for Carers strategy (1999) and it outlines how government intends to support carers and informs the outcomes and plans of health, social care, education and other services across government; it covers health, education, social care and employment matters. It covers four priority areas: Priority area 1: Supporting those with caring responsibilities to identify themselves as carers at an early stage, recognising the value of their contribution and involving them from the outset both in designing local care provision and in planning individual care packages. Priority area 2: Enabling those with caring responsibilities to fulfil their educational and employment potential. Priority area 3: Personalised support both for carers and those they support, enabling them to have a family and community life. Priority area 4: Supporting carers to remain mentally and physically well. Page 5 of 27
4 The evidence base for the need to support carers In Poor Health The impact of caring on health, Carers UK (2004) Support for Dementia Carers: Scoping Report This report looked at the 2001 census data responses from carers regarding their health. Nearly 700,000 carers reported that they were in not good health according to the census. The results showed a marked difference between the health of those who identified themselves as having caring responsibilities against those who did not; 21% of carers in the UK providing substantial care are not in good health compared to 11% of those who do not have caring responsibilities. There was a clear link between the number of hours of caring provided and the health of the carer, this is particularly evident for those who provide over 50 hours of care per week. This finding is reflected in earlier surveys such as the General Household Survey (2000) which found that three quarters (72%) of carers providing over 50 hours a week reported that their health was affected in some way and 35% of those caring for 20 hours or more reported a limiting longstanding illness. The two key factors attributed to ill health in carers are; 1. Age as carers become older, the evidence suggests that they are far more likely to be caring with ill-health at a similar rate to their own age group. The combination of their ill-health with caring responsibilities could significantly impact on their health. 2. The amount of caring hours undertaken - Overall, carers are more likely to suffer ill-health, compared to non-carers, particularly if they are providing over 50 hours of care a week. The report looked at local statistics to identify the areas where carers had the worst health; it found the greatest proportion of full-time carers suffering ill-health to be in Barnsley, Sheffield, Gateshead and Sedgefield. In these areas, more than one in four, around 26%, of those providing over 50 hours of care per week reported ill-health. Many of these areas which have high levels of carers in poor health are also areas with high levels of disability and illness. This suggests that carers may already have poor health before they start caring. And, if caring is a risk factor in ill-health, it is likely that their health could become even worse with substantial caring responsibilities. Carers face both physical and mental ill health problems. This is often due to the general strains of caring for somebody full time, the General Household Survey (2000) found that 24% of those caring for 50+ hours had reported physical strain mostly caused by having to lift or handle the person. Caring has also been found to have a negative effect on mental health with carers more likely to report high levels of psychological distress, including anxiety, depression, loss of confidence and self-esteem. A Carers UK research study in 1998 showed that 52% of respondents had been treated for a stress related disorder (Henwood, 1998). The report was unable to determine a causal link between ill health and caring but based on existing evidence determined the causes to be: Isolation Financial stresses Lack of appropriate support Lack of information The report recommended a number of solutions: The provision of information, at the right time, so that carers can access available financial and practical support, can manage more effectively and can reduce their own ill-health. An improvement in the quality or flexibility of the support can help to improve carers' health. Staying in work longer could delay financial stresses whilst caring and reduce isolation. Targeted support at key points such as at the start of caring, on major changes such as hospital admission or once caring has finished. Carers who are supported tend to have better health than those who are not. Support which is flexible and allows carers to achieve personal goals and have life outside caring has a positive effect on carers' lives. Page 6 of 27
A Road Less Rocky Supporting Carers of people with Dementia, Carers Trust, (2013) The Carers Trust commissioned the Social Policy Research Unit at the University of York, and Firefly Research & Evaluation, to undertake research to understand more about the caring journey undertaken by carers of people with dementia and the challenges they faced from the point of initial concern to the end of life and afterwards. In particular the research wanted to identify the key stress points in the caring journey when support or advice is most needed, the types of advice and support needed and at what times for both the person with dementia and in relation to the carer s own life and wellbeing. A number of critical points during the caring journey were identified as important opportunities for professionals and services to provide carers with initial information, advice and signposting, these are: 1. When dementia is diagnosed 2. When the carer takes on an active carer role 3. When the capacity of the person with dementia declines 4 When the carer needs emotional support and/or a break from caring 5 When the person with dementia loses their mobility 6 When the person with dementia has other health problems 7 When the carer has to cope with behaviour problems 8 When the carer s own circumstances change 9 When the person with dementia becomes incontinent 10 When decisions about residential care and end of life care have to be made The study highlighted a range of information, advice, support and services which can help carers at each of the critical points; it was not possible to define any common core information which could be given at these points because of the needs and preferences of the carers being so different. The areas of identified unmet need included: A lack of information available to carers of people with dementia at all stages of the caring journey. The needs of different groups of carers including gay and lesbian carers, carers of people with Downs syndrome and dementia. There was some evidence of a lack of flexibility in service provision / support which does not take account of the different needs of carers and their different stages in the caring journey. Some studies suggested that a proportion of carers may have problems getting access to services for a variety of reasons, including rurality and the lack of a diagnosis for the person with dementia. Participants in a few of the studies felt that they did not get enough emotional support in their role as carers of people with dementia. Recognition of being an expert in the care of the person with dementia. Communication - carers thought that communication with health and social care services, including communication with GPs and hospital consultants, was poor. Valuing Carers 2011 Calculating the value of carers support, Carers UK This paper estimates the value of carers support in terms of the economic value they bring to society. It shows the economic value of the contribution made by carers in the UK as 119 billion per year. The role of carers is emphasised as crucial in the balance of public services being able to cope with demand and in the management of expensive resources. It highlights that just a 1% change in the number of carers providing care or the number of hours being provided would cost the state another 1 billion in care costs. There is therefore a case for supporting carers not just in terms of staying healthy and being able to care effectively but also a vital economic case to ensure that services do not become incapable of managing the additional care in terms of resources from a capacity and financial position. Page 7 of 27
5 National, regional and local data on carers ONS Census Analysis: Unpaid care in England and Wales, 2011 comparison with 2001 There were approximately 5.8 million people providing unpaid care in England and Wales in 2011, representing just over one tenth of the population. The absolute number of unpaid carers has grown by 600,000 since 2001, with the largest growth in those providing 50 or more hours care per week. The proportion of carers providing at least 20 hours care per week has increased as shown in Table 1. Numbers of unpaid carers remained stable between 2001 and 2011 in Y&H (Figure 1). In 2011, 10.5% of the population in Y&H was providing unpaid care (Table 2 and figure 2), sixth of the nine English regions. Table 1: Breakdown of unpaid care categories for England and Wales England and Wales Per cent Extent of unpaid care 2011 2001 No unpaid care 89.7 90.0 1-19 hours unpaid care 6.5 6.8 20-49 hours unpaid care 1.4 1.1 50 hours or more unpaid care 2.4 2.1 Figure 1: Percentage change in provisions of total unpaid care between 2001 and 2011; English Regions and Wales Page 8 of 27
Table 2. Provision of unpaid care across English regions and Wales, 2011 England and Wales Per cent Region, Country Per cent No Unpaid Care Per cent 1-19 hours of Unpaid Care Per cent 20-49 hours of Unpaid Care Per cent 50+ hours of Unpaid Care London 91.6 5.3 1.3 1.8 South East 90.2 6.7 1.1 2.0 East of England 89.8 6.8 1.2 2.2 Yorkshire and The Humber 89.6 6.5 1.4 2.6 South West 89.2 7.1 1.3 2.4 East Midlands 89.2 6.9 1.4 2.5 West Midlands 89.0 6.8 1.5 2.7 North East 89.0 6.4 1.6 3.0 North West 88.9 6.7 1.6 2.8 Wales 87.9 6.9 1.8 3.4 England 89.8 6.5 1.4 2.4 England and Wales 89.7 6.5 1.4 2.4 Page 9 of 27
Figure 2: Provision of unpaid care across English regions and Wales, 2011 Per cent Page 10 of 27
6 Findings themes, good practice, challenges and identified gaps From the limited meetings with stakeholders both locally and regionally it was clear that all of the localities provided a range of support services for carers. These were provided by statutory and voluntary sector services as well as by more informal groups and networks. There was a range of information available to carers on the support available, this varied in content and type and was given out to carers by a number of agencies and at different touch points for carers e.g. at memory assessment and if the person with dementia was admitted to hospital. All of the localities involved carers to varying degrees to develop and improve services, and most organisations had access to carer forums where service user and carer views could be obtained. Some of the services had carried out evaluations of specific carer initiatives, using the findings to drive future services and improvements. There are a number of regional forums and networks which relate to either dementia or to carers generally and these were reported as being effective in terms of sharing good practice, addressing local challenges and enabling networking across different organisations. Some of these included: Y&H Regional Local Authority Carers Lead Officers Group Regional Dementia Leads Group Regional Acute Champions Forum From the discussions with stakeholders and from a brief review of national and regional reports there emerged a number of themes relating to the support needs of dementia carers. These are described below along with the examples of good practice, shared challenges and the identified gaps. 6.1 Communications with dementia carers in hospital settings Feedback from stakeholders indicated that for many carers the support they received when the person with dementia was admitted to a hospital was variable and at times poor. Carers groups raised concerns from carers that a) they did not feel involved in the care being provided to the person with dementia and b) they did not receive sufficient information on the support available to them. Healthwatch Bradford and District heard concerns from carers about how people with dementia were cared for when they had to go into hospital. In response they set up an Enter and View visit to one elderly care ward at Airedale General Hospital where they found both good practice and areas for improvement. Healthwatch Bradford and District have also conducted a review of carers of people with dementia about their views and experiences of care in hospital for older people with dementia, particularly in relation to the environment, support received and gaps in services. This work is district-wide and was completed at the end of January 2014; a report of the key findings is being prepared. In the report A Road Less Rocky (2013), carers thought that communication with health and social care services was poor, this included communication with GPs and hospital consultants. The recent Royal College of Nursing Triangle of Care document for dementia carers outlined 6 key standards required to achieve better collaboration and partnership with carers, these all apply to acute care: 1. Carers and the essential role they play are identified at first contact or as soon as possible thereafter. 2. Staff are carer aware and trained in carer engagement strategies. 3. Policy and practice protocols regarding confidentiality and sharing of information are in place. 4. Defined post(s) responsible for carers are in place. 5. A carer introduction to the service and staff is available, with a relevant range of information across the care pathway. 6. A range of carer support services is available. Page 11 of 27
Good practice examples Communications with dementia carers in hospital settings A number of acute trusts across the region were running initiatives to improve the ways in which carers accessed information, examples given were: Developing a passport for carers in acute care Sheffield. An Alzheimer s Society worker on the acute wards in Barnsley. Leeds - hospital based carer support worker, in conjunction with Carers Leeds. The potential use of A level students as volunteers in Huddersfield. The use of dementia volunteers on wards at Bradford Royal Infirmary. Both acute trusts interviewed (Bradford, Hull) cited the use of the Y&H Acute Dementia Champions forum as useful for sharing best practice and addressing shared challenges. Challenges Gaps A challenge faced by one of the acute trusts interviewed was involving carers in positive ways to improve services; they reported low response rates to carers surveys and struggled to find ways to get carers more involved. As part of their drive to improve carer engagement they were working to ensure carers were involved in the direct care of the person with dementia which included tasks such as bathing and feeding. They also issued information bags on support services for carers with information provided in both a written and audio format. 1 The lack of a consistent approach to the provision of information given to carers when they are in contact with acute services. 2 Involving carers in positive and meaningful ways to be involved in the care planning of the person with dementia and in contributing to the improvement of services. 6.2 Post diagnostic support and sign posting There is an identified gap in the provision of on-going support and sign posting for carers post diagnosis, this has been particularly highlighted as an issue for memory assessment services in mental health services. South West Yorkshire Foundation Trust (SWYFT) refers to the post diagnostic period as the wilderness years, a term they use to describe the lack of access to timely support for carers following the diagnosis for the person with dementia. As an organisation they are focusing on improving post diagnostic support as part of their transformation programme. A group of national organisations which include the Department of Health, NHS England, Public Health England, ADASS (Association of Directors of Adult Social Services) and others, are seeking to find out more about the availability of different sorts of post diagnostic support across the country so that they can consider ways to support local commissioners to offer consistently high-quality support to people with dementia and their carers. A survey, aimed primarily at Clinical Commissioning Groups (CCGs) and Local Authorities, will inform this work which will take place in 2014. Page 12 of 27
Good practice examples Challenges Gaps Post diagnostic support and signposting Y&H has three Admiral Nursing Services provided in NE Lincolnshire, Hull and Kirklees, they are provided in partnership with Dementia UK. The service is delivered by specialist dementia nurses who focus on the needs of the carers from the point of diagnosis to the end of life. At a Kirklees Admiral Nurses meeting, carers shared their personal narratives of their experiences of using the service. These were moving and overwhelmingly positive and praised the skill of the nurses in providing the right information at a point when they needed it. They felt supported in navigating the many services and experienced easy access and smooth transitions when needs became more complex. Many memory assessment services face the challenge of balancing the demand to increase the numbers of people being diagnosed with the capacity to provide on-going care and support post diagnosis for carers. Admiral Nurses are able to offer specific support for carers but are not commissioned in all localities. 3 The lack of a consistent approach in the provision of information given to carers at the point of diagnosis when they are in contact with mental health services both across organisations and across the Y&H region. 4 A lack of agreement on how memory services connect into third sector and community services to ensure effective post diagnostic support for carers. 6.3 Identifying carers The refreshed Carers Strategy of 2010 emphasised the importance of identifying and supporting those with carer s responsibilities at an early stage. It acknowledges that for many carers accessing support may be difficult for a number of reasons including stigma, a lack of identifying as a carer or remaining hidden from services. The consequences of not having early access to information is that the carer may lack knowledge of the specific illness or condition of the person they are caring for or on how to access support for important decisions such as housing, finance, employment. Stakeholders interviewed recognised the need to identify carers as early as possible to ensure that they received information on dementia and its progression and on the support services available to them. Some of the people interviewed felt there was a challenge in getting GPs to identify carers at an early stage and appropriately sign post to appropriate services. There was a concern from many of the organisations that there remained a large number of carers who were not accessing support services because they had not yet been identified as a carer, did not define themselves as a carer, or were not able to access information and support because of language or cultural barriers. Page 13 of 27
Good practice examples Challenges Gaps Identifying carers Bradford Council is in the process of setting up a partnership project to establish carer links within GP practices to encourage the early identification and sign posting of carers. York Carers Centre has been commissioned by the Vale of York CCG to offer training to all GP practices in the area. The practice goes on to identify a carers champion who becomes the link person in supporting practices to identify and support carers The Alzheimer s Society runs a tea on tour scheme which takes information on dementia into community venues. They have also provided Tesco road shows taking information out to Tesco car parks. Feedback from carers in more rural areas indicated that these were less stigmatising and more anonymous then accessing locally based services. The University of Bradford have worked with BME (black and minority ethnic) voluntary sector groups to run road shows in community venues to raise awareness of culturally specific services available. Healthwatch in Bradford, ARC research and the University of Bradford all highlighted the issue of those carers who remain unidentified or are not accessing services available to them. These carers may be from BME groups and face language or cultural barriers or live in more isolated rural areas. The issue of carers in rural areas was raised as one of the challenges in The Carers in the Region Profiles (CIRCLE 2009). The Road Less Rocky (2013) reported that one of the barriers to carers accessing support was a lack of transport in more rural areas. Some of the barriers for those carers from BME communities included language and a lack of knowledge on the services available to them some of which were not felt to be culturally appropriate. In some cases family members were reluctant to be identified as a carer or to access support services. 5 A lack of robust mechanisms for the early identification of carers. 6 A lack of effective ways of identifying and supporting carers in more hard to reach areas. 6.4 Identifying the health needs of carers As described in Section 3 of this report, the impact of caring on carers health can be negative, with carers more likely to have physical and mental health problems then the non-caring population. The average age of family carers of those with dementia is between 60 and 65 and many are often much older (Road Less Rocky, 2013). As they are more likely to be caring with ill-health themselves (in keeping with the general population in this age group) the impact of caring on their health could be significant. In 2011 an evaluation of the National Carers Demonstrator Sites programme was published. The demonstrator sites were developed by the Department of Health as part of the commitment to the 2008 National Carers Strategy. The programme focused on three areas of support and one of these aimed to deliver annual physical health and / or health and well-being checks for dementia carers. A total of six sites aimed to deliver annual physical health and / or health and well-being checks for carers. The sites that developed health checks in partnerships with GPs found that as their projects developed, GPs took a more active role and the number of referrals through GPs increased. By the end of the project period, many GPs had seen the advantages of referring carers for support and GP practices had become an important way of getting in touch with carers. Page 14 of 27
Good Practice Examples Challenges Gaps Identifying the health needs of carers There were no examples of good practice on the identification of carers health needs shared as part of the stakeholder discussions. Some of the stakeholders interviewed described the challenge of getting carers to access GPs for health checks, none of those interviewed had examples of initiatives which sought to carry out health checks on carers. 7 A need to ensure that support structures for carers take into account their physical and mental health needs. 8 There is a lack of agreed processes for carers to receive health checks from health professionals as part of their support packages. 6.5 Information for carers on available support The Road Less Rocky (2013) report carried out a focused literature review on carers experiences of caring. The findings suggested that the needs of carers varied along the stages of the caring journey and that one of the most pressing needs was for information and education at the right time and although this would vary, the need for information became higher when the person with dementia progressed to the next stage of the illness. A Carers UK report into the poor health of carers In Poor Health (2004) identified strong links between the amount of time spent caring and ill health. They suggested that a number of issues were in part contributable to poor health with one of these being a lack of information on matters such as finances, benefits and employment. For instance a lack of information on financial support could impact on increased poverty and poor health and wellbeing. Page 15 of 27
Good practice examples Challenges Gaps Information for carers on available support Bradford Royal Infirmary provides a range of information in a carer s bag available on the wards as part of their Forget-Me-Not campaign. Wakefield memory assessment services provide high quality booklets on information specifically for dementia carers. York Council provides information and sign posting via a single telephone number available to all carers. Websites such as the Hull Dementia Academy or the Alzheimer s Society or help lines such as Admiral Nursing Direct provide comprehensive information and support to carers. ARC Research based in Sheffield is working in the Yorkshire & Humber region developing a website specifically for dementia carers. It is aimed at those carers less able to access mainstream information and will provide support and advice from a carers perspective tailored as much as possible to meet individual carer needs. The feedback from stakeholders indicated that the challenge was not in the lack of information but in coordinating the large amounts of information to ensure carers got appropriate and timely information. The format of the information given to carers varied from training courses, leaflets, helplines, websites and information packs provided by a whole range of services. It was acknowledged that the amount of information could be overwhelming and there was a lack of coordination in terms of who gave out information, what was given out and how carers had their needs identified to ensure they received the most relevant and timely information. There was concern that many carers remained unaware of the support available due to the fact that they did not identify themselves as a carer or because they did not receive the most appropriate information at a time when they needed it. 9 A need for agreed good practice and innovative ways to ensure carers information is made available to those harder to reach groups such as those in rural area or BME groups. 10 A lack of agreement on the needs of carers in relation to the information they require at points along the caring pathway. 11 The sharing of good practice in relation to carer information across the region. 6.6 Evaluating outcomes and impacts of support interventions for carers There are a wide range of available support services, networks and initiatives for dementia carers provided across all of the localities. However, there appears to be less in terms of evaluating the impact of these on the carer s physical or mental health or ability to care and therefore determine their effectiveness. The Next Steps for the Carers Strategy (2010) addressed the issue of the evidence base for carers interventions and concluded that it was difficult to focus evidence of improved outcomes for carers from single interventions. An effective support package would focus on the specific need of an individual and could therefore consist of a range of interventions provided by numerous organisations, therefore a more strategic approach would be needed to both evaluate and commission local services. Page 16 of 27
Good practice examples Challenges Gaps Evaluating outcomes and impacts of support interventions for carers York Council shared an evaluation that they carried out on the impact of the small grants scheme which enabled groups to be run for carers, they evaluated the effectiveness of the groups in supporting local carers. York Council also sought feedback from carers on the carer support services commissioned by the Local Authority, gaps in services were identified and the findings used to inform future services. The Y&H Regional Dementia Leads meeting have been looking at ways of improving the outcome measures for the dementia services commissioned across the region through examining the availability and application of various validated and non-validated tools across the dementia pathway. A toolkit of validated quality outcome tools and evaluation methods will be developed to support commissioners in monitoring/evaluation of services. These will include measures that focus on carers. Most of the stakeholders that provided or commissioned services described the challenge of effectively evaluating the impact of the interventions on carers. 12 The lack of locally or regionally agreed outcome measurement tools for interventions that would enable bench marking or support future commissioning decisions. 6.7 Developing informal support systems There was an underlying theme on the need to develop more informal and less stigmatising models of support that maintain community networks for those with dementia and their carers. One of the concerns raised was the lack of focus on maintaining relationships with family and friends which, when they broke down, were often replaced with formal services. The NHS Confederation s work on developing Recovery Colleges has been a national initiative to help promote access to people and places in the community that enable meaningful involvement and selfdevelopment and are integrated in society, providing a sense of being able to live well with mental health problems. This approach has been taken up by SWYFT across adult and older peoples mental health services. The findings of a recent project on loneliness by the Joseph Rowntree Foundation, although not directly related to dementia carers, resonate with their experiences. The project, an action research programme focused on communities in Bradford and York and involved people of all ages. The top three issues contributing to people feeling lonely were: 1. Isolation and being on your own 2. Bereavement and loss 3. Being older Communities were encouraged to come up with their own ideas and solutions to combat loneliness and these were all informal and supportive, and including walking groups, film nights and art projects. The impacts of these initiatives on the members of the community were positive and they improved the feelings of isolation and loneliness of those involved. Page 17 of 27
Good practice examples Challenges Developing informal support systems The move to supporting communities is reflected in national initiatives such as building dementia friendly communities (Alzheimer s Society and the Dementia Action Alliances). In the Y&H region, Bradford and York have been supported by the Joseph Rowntree Foundation to become dementia friendly communities. Both cities are working to make people with dementia feel included in their community, to be more independent and to have more choice and control over their lives. In Y&H, ARC Research are working on the development of a website for dementia carers that will provide help and support from the perspectives of other carers top tips on how individuals have managed personal challenges and stories and narratives from perspectives that carers can directly relate to. Due to the number of initiatives and projects it is often difficult to develop a joined up approach across localities. Stakeholders described the challenge of keeping up to date with new services and developments. Gaps No specific gaps were identified by stakeholders. 6.8 Working carers The Next Steps for the Carers Strategy (2010) emphasises the need for employers to support carers in the work place as a means of benefitting the organisation, enhancing the ability of the carer to care and supporting the wider economy. Good practice examples Challenges Gaps Working carers The University of Bradford provides a support group for staff who are also dementia carers, no other examples of this type were identified in the stake holder discussions. No specific challenges were identified by stakeholders. 13 There is a potential gap for employees in public sector organisations especially those who provide services to those with dementia to support their own employees to manage both work and caring duties. As exemplar employers and as advocates of dementia friendly services, this may be an area for further consideration. Page 18 of 27
7 Conclusions and Recommendations The summary table below identifies the potential for the Y&H Improvement Academy to support improvements in response to the challenges and gaps identified in Section 6 above. Potential areas have been allocated a priority based on an assessment of how well support from the Improvement Academy would meet the identified need, and how well the Improvement Academy is positioned to undertake this work in collaboration with partners. It is recommended that the Improvement Academy focuses its future support on improving access to appropriate information for carers. The proposal to take forward this issue as an area for improvement has been supported by many of the stakeholders interviewed and by members of the Y&H Regional Dementia Leads group. Recommended next steps include: 1 To pursue the possibility of commissioning an Effectiveness Matters paper on the best way to ensure carers get access to timely and appropriate information. Effectiveness Matters papers are evidence summaries produced by the NIHR Centre for Reviews and Dissemination (University of York). 2 To connect into the existing regional networks to explore the possibility of facilitating a regional event on improving access to information for carers getting the right information at the right time in the right way. It is recommended that this is integrated into existing structures and workstreams to ensure the most benefit for the region and the sustainability of any improvements agreed. The recommended next steps should be for the Improvement Academy to have further discussions with partners to understand how best to take forward any plans for a regional event. It is also recommended that the Improvement Academy pursues the possibility of commissioning an Effectiveness Matters paper on to identify the most effective interventions for dementia carers. Page 19 of 27
Summary Table Theme Challenges / Gaps How are the gaps being addressed and by whom 1 Communications with dementia carers in hospital settings Gap 1. The lack of a consistent approach to the provision of information given to carers when they are in contact with acute services. Gap 2. Involving carers in positive and meaningful ways. 2 Post diagnostic support and signposting Gap 3. The lack of a consistent approach in the provision of information given to carers at the point of diagnosis. Gap 4. A lack of agreement on how memory services connect into third sector and community services to ensure effective post diagnostic support for carers. The Acute Champions Forum identifies good practice and supports the challenges and solutions to improvement. These are being addressed at a local level and what is available varies from one service to another making any agreed standard difficult. These are also being addressed in local dementia strategy forums and networks. How could the Y&H Improvement Academy support improvements Via the Acute Champions Forum to identify the types of information given, how it is shared and the formats available. This could link into theme 5 (information for carers). This could link into theme 5 (information for carers) as some of the issues for memory services overlap with this theme. Priority for Improvement Academy Low There is an existing forum which supports service improvements. This issue was not identified by all the stakeholders. Organisations are working on their own solutions e.g. Bradford Royal Infirmary is working to develop an information pathway. Low Some of the identified issues will be addressed in the work on information for carers. This complex issue may need to be taken up either locally or via the Y&H regional leads meeting. Page 20 of 27
Theme Challenges / Gaps How are the gaps being addressed and by whom 3 Identifying carers Gap 5. A lack of robust mechanisms for the early identification of carers. Gap 6. A lack of effective ways of identifying and supporting carers in more hard to reach areas. Initiatives developed across organisations to find solutions to this issue with examples of good practice. No regional development in this area. How could the Y&H Improvement Academy support improvements The role of Y&H Improvement Academy is unclear regarding this theme as there are a number of initiatives in localities and this may not be easily resolved at a regional level, due to geographical and ethnic differences. Priority for Improvement Academy Medium Raised by the majority of stakeholders, especially regarding hard to reach carers. The refreshed Carers Strategy of 2010 emphasised the importance of identifying and supporting those with carers responsibilities at an early stage. 4 Identifying the health needs of carers Gap 7. A need to ensure that support structures for carers take into account their physical and mental health needs. Gap 8. There is a lack of agreed processes for carers to receive health checks from health professionals as part of their support packages. This issue does not appear to have been addressed successfully at a locality level. The evaluation of the national demonstrator sites has not resulted in larger scale roll out or in recommendations for actions. A regional approach may not be the most appropriate due to service variations and the potential costs for this improvement. Local initiatives and pilots are being developed which could be rolled out if effective. Medium This was an identified gap by some of the stakeholders. National reports highlight the poor health of carers and the impact on the person with dementia if the carer becomes ill. Page 21 of 27
Theme Challenges / Gaps How are the gaps being addressed and by whom 5 Information for carers on available support Gap 9. A need for agreed good practice and innovative ways to ensure carers information is made available to those harder to reach groups such as those in rural areas or BME groups. Gap 10. A lack of agreement on the needs of carers in relation to the information they require at points along the caring pathway. Gap 11. The sharing of good practice in relation to carer information across the region. This issue was raised in all of the stakeholder interviews. Although some individual Y&H organisations are working to improve information to carers there was no identified regional forum or work stream dealing with this specific issue at present. How could the Y&H Improvement Academy support improvements Identify the possibility of developing an Effectiveness Matters paper on the best ways to give information to carers. Connect into regional networks to support an event on information for carers to share good practice and identify areas of improvement. Priority for Improvement Academy High This was an issue raised by all of the stakeholders interviewed. There does not seem to be any regional network addressing this specific issue. The Road Less Rocky report found that one of the most pressing needs is for information and education at the right time. A Carers UK report identified that a lack of appropriate information could contribute to poorer health for carers. Page 22 of 27
Theme Challenges / Gaps How are the gaps being addressed and by whom 6 Evaluating outcomes and impacts of support interventions for carers Gap 12. The lack of locally or regionally agreed outcome measurement tools for interventions that would enable bench marking or support future commissioning decisions. 7 Developing informal support systems Although this was raised as an issue for some of the stakeholders there was no identified gap. This is an issue being addressed at local levels with some organisations actively working on building in evaluations into their services and using findings to inform future services. The issue of outcomes for all dementia interventions is being addressed at a regional level by the Y&H regional Dementia Leads group. This has not been raised as an issue within regional networks. These are still emerging areas of development and so may not yet be identified as an improvement area. How could the Y&H Improvement Academy support improvements Develop an Effectiveness Matters paper to identify the most effective interventions for dementia carers. Act as a support system to the regional dementia leads group if required. At this point the role of Y&H Improvement Academy remains unclear Priority for Improvement Academy Low This is an issue being addressed by the Y&H regional dementia leads group. Would be better addressed by those directly involved in commissioning or delivering services to ensure effective roll out and sustainability. However an Improvement Academy commissioned Effectiveness Matters paper could support individuals and organisations in doing this more effectively. Low There is insufficient information on the challenges for this to be a clearly identified area of improvement. Page 23 of 27