Tag Archives: carers

Young carers: sacrifice and support

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While there has been a lot of conversation about the vulnerable over the last two years of the COVID-19 pandemic, and rightly so, there has not much attention given to the people who care for them, particularly the young people who do so. Young carers carry a lot on their shoulders, and this has only been increased with the impact of the pandemic affecting those they love. However, we also need to look out for these young people and give them the support they deserve.

Issues faced by young carers

Young carers are faced with many challenges due to their position and this can depend on the carers, their age, the level of care they give and who they care for. A report on siblings of disabled children from the UK charity Sibs found that the particular young carers they engaged with tended to not get as much attention and support from their parents because of their sibling needing more urgent care. Even something as simple as going out to play centres or restaurants must be adapted to fit the disabled sibling, with the carer sibling rarely getting their own choice.

Young carers have also been found to be at more risk of mental health problems than others, particularly if the person they are caring for is a parent with a mental illness or a history of substance misuse.  A study from Scotland found that young carers, much like adult unpaid carers, were more likely to have physical health issues such as tiredness, backache and bad diets in addition to reporting worry, stress, anxiety, depression and resentment. They were also found to have significantly lower self-esteem and feelings of happiness than non-carers.

Impact of pandemic

The COVID-19 pandemic impacted young carers greatly. Sibs reported that a lot of parents felt their carer children were extremely worried about contracting the virus and giving it to their sibling, or bringing it into the household if their family were shielding or vulnerable. Others also reported their child withdrawing from friends, either because of shielding or simply because they were uncomfortable socialising outside of their household. Sibs also noted cases where siblings would become the object of their disabled sibling’s anger or frustration.

In addition, a lot of activities and support groups normally put into place for these specific carers, in order to give them attention and opportunities to enjoy life outside of their role as a young carer, were cancelled due to COVID-19, and left many young carers at home, where they were often ignored if their sibling or parent needed additional support.

Other young carers have had to take on a range of duties, including shopping for their families or taking care of their home or other siblings. A lot of these young people have had to balance this with continuing their education from home and dealing with having their lives outside of the home cut off due to social distancing and isolation. This is on top of the general struggles of growing up as a child and adolescent. Izzy, a 12-year-old interviewed by a study from the Centre for Research on Children and Families, said she felt her entire life was “being a mini adult, but it’s not a pick and choose the time sort of thing.” 

Support

There have been a range of support services for young carers across the United Kingdom. Young carers groups have been found to be a great resource to help find other young carers and share some of the issues that affect them with people who understand. These groups  are also important as an outlet outside of their role in the family home, providing support  solely for  young carers. Even during the pandemic, some groups were able to schedule calls for young carers which provided them with interaction just for them, and something to look forward to each week at home.

However, many young carers remain “hidden” from services, either out of choice or because they have been ignored. Some simply don’t know about support groups or services, or have been found to not consider themselves ‘carers’. Instead, they  view their lives as “normal” or doing something that’s “expected” of them. Others may be afraid of the stigma their particular situation may bring them, and therefore want to be perceived as the same as their fellow students.

Final thoughts

The pandemic has pushed conversation and debate towards how we care for the most vulnerable in our society, and hopefully will lead to improvements in our attitudes towards care. However, this also has to extend towards unpaid carers, and particularly the young people who often shoulder invisible labour at the expense of their childhood.

Further reading: more from The Knowledge Exchange blog on carers

Who’s caring for our young carers?

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In less than two months time the UK will come together to recognise the 700,000 young people in the UK who provide care and support to families and friends, on Young Carers Awareness Day on 25 January.

Every day, children and young people provide physical and emotional care and support to their family members. Helping with household tasks, they care for young siblings, administer medication and deal with the emotional and physical stress of caring for a loved one with an illness. Estimates of the number of young carers living in the UK vary greatly. But Carers Trust suggests the number of young carers to be around 700,000 – that’s 1 in 12 secondary school-aged pupils. And those are only the ones we know about. Too many are falling through the net, going unnoticed and unidentified by services who can support them.

Attainment and employment

Earlier this year we joined in publicising the 2017 Young Carers Awareness Day, whose theme was “When I grow up”. The idea was to help people to understand how difficult it can be for young carers to realise their hopes and dreams for the future without the right support in place. A survey conducted by the Young Carers Trust found that over half (53%) of those surveyed were having problems in coping with schoolwork, with nearly 60% struggling to meet deadlines. Over 70% have had to take time out of school or learning specifically to care for a family member. A third admitted that they have to skip school most weeks.

With over 50% of young carers surveyed by The Children’s Society admitting that their caring responsibilities have caused them to miss days at school, and the burden of caring impacting on the ability of children to engage fully with school activities, it is unsurprising that young carers are twice as likely to be NEET as their peers. In addition, young carers in work find caring responsibilities have a disruptive effect on their workplace attendance, with understanding and flexible employers often being the difference between young adult carers remaining in work or becoming unemployed.

Mental health and wellbeing

Caring for a relative takes a massive toll on a young person. Recent reports published by Carers Trust and the Children & Young People’s Commissioner Scotland (CYPS) both show the significant mental health burden that caring places on a young person. Stress, isolation and anxiety that can come as a result of being a carer can have a significant impact on a child as they lose much of their contact with the outside world, become removed from social groups and miss out on opportunities to experience a “normal” childhood. Projects like Off the Record’s Young Carers Project in Croydon provide support and opportunities for respite for young carers. But it is clear that as child and adolescent mental health services  (CAMHS) are becoming increasingly stretched themselves, it is more important than ever to ensure that specialist services are also made available to young carers.

Partnerships working to provide support

Young carers often come into contact with multiple services. Education, social care, health and others all have an impact on young carers and their experiences and as a result can have a positive impact on their experiences too. Increasingly, services are being encouraged to cooperate in order to create a holistic support network for young carers, which encompasses every area of need they may have, and creates a seamless transition for young carers through all of their interactions with various services. Key coordinators and facilitators are vital in this role.

In the previously referenced report from CYPS, it was highlighted that many young carers felt positive about – and took pride in – their caring role, but that around two-thirds also said they felt “left out of things” at least some of the time. While they care for their loved ones, we need to make sure someone is caring for them.

Young Carers Awareness Day 2018 will take place on 25 January 2018.

Follow us on Twitter to see what developments in public and social policy are interesting our research team.

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Telecare in the UK: lessons from Barcelona

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By Rebecca Jackson

Telecare is technology to help people live independently, usually in their own homes, for longer. Usually delivered as part of a package of care, telecare devices can include things like: bed sensors, to detect if someone is out of bed at an unusual time; fall sensors; medication reminders; and alerts on screens or over loudspeakers. Such devices have led telecare to be heralded as a new dawn in patient-centred, independent living.  However, despite initiatives  to drive its application forward, not everyone in the UK is convinced about the benefits of telecare.

Practitioners and carers are sceptical about the potential of replacing traditional care with digital models to save money and the impact that this could have on standards of care. In addition, many patients themselves are uncertain about the use of telecare and digital health solutions, with many who have telecare systems within their homes choosing to continue to interact with primary and home care services in the same way as before. Much of the academic and expert-led research and evaluation of telecare programmes in the UK by organisations such as the Nuffield Trust and the Kings Fund has found little to no improvement in service, reduction in cost or reduction in workload for care teams in areas where telecare has been deployed.

While telecare in the UK appears to have stalled, elsewhere digital health solutions are not only successfully integrated into traditional care models, but are having a positive impact on the people in receipt of care, and reducing the burden of work on care providers.

Lessons from Barcelona

In Spain, the law has guaranteed access to telecare since 2006. Economic austerity has led to individual local authorities in Spain being given control over their budgets and therefore their provision of telecare. The approach in Barcelona has been highlighted as an example of best practice in telecare.

The system there – a cooperative venture between an independent provider and the local authority – sees carers take a proactive approach to telecare. The system does not just monitor and provide assistance in times of distress, but proactively engages with service users at regular intervals to help carers provide reassurance and build relationships.

As well as the emergency measures, such as fall sensors (typically the primary use of telecare in the UK), calls are made to check up on service users, provide reassurance, deliver general public health information and to mark important occasions, like birthdays. This can help to reduce feelings of isolation and loneliness, which in turn can lead to better general health and wellbeing.

Calls can also be made to highlight important information, such  as weather warnings; safety alerts and local events which the service users may wish to attend. These calls are backed up by visits from the care team, who work for the telecare provider. These visits supplement visits from municipal care and social workers and the two teams communicate and share information via digital platforms.

Digital healthcare as an enabler

The case of Barcelona shows us how digital healthcare solutions, and more specifically telecare, can be used as an enabler – a tool to allow the local authority to pursue a joined up and preventative approach to healthcare which has positive benefits for recipients.

Such approaches could also have a significant impact on the UK’s 3.8 million unpaid carers. Telecare has the potential to reduce some of the burden and stress of caring for a relative, which in turn can have positive effects on the health of the person in receipt of care. It can also  form an effective part of reablement programmes – supporting people as they leave hospital or return to independent living.

However the approach to delivering telecare in Britain is as much about culture as it is about the technological infrastructure. Using telecare as part of a preventative, person-centred approach should produce better outcomes. In this sense, implementation of telecare in the UK still lags behind other countries. Key lessons could also be learnt from programmes in Norway and the Netherlands in relation to telecare in dementia settings.

Generally, the targeting of telecare services also differs – in the UK it tends to be aimed at elderly people with complex and diverse needs, while in Norway and the Netherlands the focus has shifted to those suffering from chronic illnesses.

Local solutions

In the UK, some local authorities have been experimenting with digital healthcare, although local authority budget cuts have meant that in many cases these have been cut back to focus delivery on the most vulnerable clients.

The lessons in digital healthcare that Britain can learn from places like Barcelona could be key to the successful roll out of digital healthcare solutions in the future. The Barcelona example highlights the enabling role that telecare can play in joining up health and social care and promoting a more preventative approach to healthcare.

Opportunities to develop telecare strategies and deliver them in partnership, as in the Barcelona model, show that it cannot be delivered in isolation, or be used as a replacement for existing carer-led services. Instead telecare has the potential to be a supporting tool to ensure effective care outcomes. It could also help care services in Britain to tackle the increasing demand of an ageing population.

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Read some of our other blogs on social care:

Dementia’s impact on those who care

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Old man

By Alan Gillies

Recent research has suggested that the rate of growth in the prevalence of dementia may be levelling out as the general health of the population increases. While such findings are encouraging, commentators have pointed out that increasing rates of obesity and diabetes, as well as the fact that people are living longer, means they have to be treated with caution.

Whether we face a continuing increase, a stabilisation or a decline in dementia, for those who are affected it will continue to have a devastating impact. And this includes not just the person with dementia, but also their loved ones and those who care for them.

A recent enquiry to our Ask a Researcher service asked for our help on this very question. As a social worker needing to understand the broader impacts of the disease on the family in order to be to provide appropriate help and support, the enquirer came to us looking for the available research evidence on the impacts of dementia on those caring for them. Our researcher was able to provide a comprehensive roundup of the current literature, highlighting the variety of issues facing carers of those with dementia.

Carers’ working lives

Not all the issues covered were ones that might be immediately obvious, like the practicalities of caring and the emotional impact of seeing a loved one affected. For example, one piece of research we were able to flag up examined the impact on carers’ working lives and workplace relationships.

Over half of respondents to a survey (53%) said that their work had been negatively affected due to their caring responsibilities. The survey highlighted the pressure on those in the prime of their working life, most often women, who are combining care for an older relative, often at a distance, with a range of other family responsibilities.

Minority ethnic carers

We also highlighted research on the way dementia can affect different sectors of the population. One recent study we identified, examined how the migration experiences and life histories of Sikhs living in Wolverhampton impacted on their experiences of caring for a family member with dementia and the barriers to accessing services.

It found that, rather than cultural differences, it was migrants’ experiences and perceptions of social exclusion, their perceived and actual social position as migrants, that affected the ways in which they accessed services.

Communicating with family members who have dementia

As well as drawing together a range of research on carers’ experiences and difficulties, we were able to include examples of initiatives, such as Talking Mats, which can help to improve the experience of caring for a loved one with dementia.

Talking Mats are a simple communication tool, developed at the University of Stirling, to help people with communication difficulties to express their views. It uses a simple system of picture symbols that allow people to indicate their feelings about various options relating to a topic.

Research for the Joseph Rowntree Foundation looked at their use for people with dementia and their family carers. It found that, unexpectedly, although the people with dementia and the family carers both felt more involved in discussions using Talking Mats, the increased feeling of involvement was significantly higher for the carers. Carers repeatedly reported feeling ‘listened to’ by the person with dementia and felt that their loved one could actually ‘see’ their point of view. It found that many family carers said they often choose not to say something that is going to inflame a situation, so instead they say nothing at all. Whereas the Talking Mats tool allowed them time and space to have their say, and helped to organise and structure their conversation with the person with dementia for whom they cared.

Our response to the enquiry provided our member with a speedy and concise roundup of the currently available literature on the issues and difficulties facing those who provide vital care for people with dementia.

Our popular Ask a Researcher enquiry service is one aspect of the Idox Information Service, which we provide to members in organisations across the UK to keep them informed on the latest research and evidence on public and social policy issues. To find out more on how to become a member, get in touch.

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Being a young carer shouldn’t be a struggle

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Five teens hang out in a park and share a bible

By Stacey Dingwall

Last month the winner of the Apps for Good “People’s Choice Award” was revealed as a group of school pupils from Denbigh High School in Luton, with their idea for a mobile phone app to support isolated young carers. One of the team members revealed that “the problem that we are trying to solve is how can you help young carers get back into society, meet others like themselves and access the essential support services that they need – all in one place?”

The question of how to support young carers also gained publicity earlier this year with the launch of a national campaign calling for policy changes to help young adult carers to participate in learning and work. NIACE, along with other members of the National Policy Forum for Young Adult Carers, is calling for three specific policy changes: young adult carers to be formally identified as a ‘vulnerable group’ giving them full entitlement to the 16-19 Bursary; young adult carers to be exempt from the 21 hour rule in the benefit system; and young adult carers to be able to access flexible hours Traineeships and Apprenticeships.

The extent of young carers in the UK

New measures introduced in April 2015 through the Care Act and the Children and Families Act place a responsibility on local authorities in England to take reasonable steps to identify young people who are caring for an ill or disabled family member, assess their needs and explicitly define what those needs are.

Our latest briefing for our members, many of whom work in children’s services or the voluntary sector, looks at the impact that caring can have on young people’s lives and how support can be improved.

2013 figures from the Office for National Statistics, based on the 2011 Census, placed the number of young carers (aged under 19) in England and Wales at 244,000. Of these, 23,000 young carers were aged under nine, and 10,000 were aged under seven. There were also 149,000 aged between 15 and 19, around twice the number aged between 10 and 14. Estimates from the Carers Trust suggest there are 36,821 carers in Scotland aged under 25, and around 30,000 child carers in Northern Ireland.

Hidden carers

In order to be identified in official statistics however, young carers need to be known to health, education and social care services. As acknowledged by the UK government’s 2010 Carers’ Strategy, many young carers actually remain hidden from services.

This is for two reasons: services need to do more to identify them; and some families actively conceal their need for a young person to undertake caring responsibilities, out of fear they will be taken into care. Another issue is that the young person or their family may not even recognise that they are classed as a young carer.

The practical, mental and emotional impacts of caring

With regards to the practical impact of caring, The Children’s Society has highlighted research by the Audit Commission which found that young carers between the ages of 16 and 18 had a much greater chance of being not in education, employment or training (NEET). In terms of the mental health of young carers, research by the Carers Trust found that 38% of those who participated indicated that they had a mental health problem. Additionally, the Longitudinal Survey of Young People in England (LSYPE) notes that young carers are 1.5 times more likely to have special educational needs, a disability or long-term illness themselves.

How to improve support for young carers?

The Carers Trust has made a series of recommendations for schools, GPs, health and social care services, and young carer and young adult carer support services, on actions they should take to improve the information and support available to young carers. These include that schools should establish a clear framework of support for young adult carers, which is embedded into the school’s policies and communicated to parents.

Our briefing also highlights examples of organisations who provide support and respite services for young carers, such as the Children’s Society’s Young Carers in Focus (YCiF) project. Part of the Include programme, this service includes the provision of a dedicated social networking site for young carers and those working with them, as well as specialist weekends, which offer young carers the chance to build skills and knowledge across a wide range of topics, including different potential future professions.

The Knowledge Exchange specialises in public and social policy. To gain an insight into the commentary it offers, please explore our publications pages on the Knowledge Exchange website.

Our members benefit from exclusive brieings, access to a dedicated team of researchers, and current awareness services. You can find out more about our unique service in this blog article and for more information on membership options, contact us.

Can the Care Act really provide the transformation in adult social care needed for modern society?

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pregnant carer giving pills and medication to her patientBy Heather Cameron

The legislative framework for adult social care in England has been described as out-dated by the Department of Health (DH) as it is focused on crisis intervention rather than prevention and early intervention, and on the provision of services, rather than enabling the system to be centred around the health and wellbeing of people and carers. The DH has therefore highlighted the need for government intervention to reform the legal framework so it better fits the purpose of modern care and support.

The government’s objectives for adult social care are to improve people’s quality of life, delay and reduce the need for care, ensure positive care experiences and safeguard adults from harm. The Care Act 2014 was passed into law on 14th May 2014 with the aim of transforming adult social care in England to meet these objectives.  Although the Act is generally concerned with care and support matters in England, some provisions extend to the devolved nations.  The main focus of the Act is on promoting individual wellbeing and preventing the need for care and support. In particular, it makes provision:

  • to reform the law relating to care and support for adults and the law relating to support for carers;
  • about safeguarding adults from abuse or neglect;
  • about care standards;
  • about Health Education England;
  • about the Health Research Authority;
  • about integrating care and support with health services; and
  • for connected purposes.

According to Care and Support Minister, Norman Lamb: “the Care Act represents the most significant reform of care and support in more than 60 years, putting people and their carers in control of their care and support. For the first time, the Act will put a limit on the amount anyone will have to pay towards the costs of their care.”

Due to come into force in April 2015, with its provisions related to funding reform to be implemented a year later, the success, or otherwise, of the Care Act’s implementation is as yet unknown.

Nevertheless, there has been much discussion over the potential issues and challenges with regard to implementation. The College of Social Work (TCSW) argues that the implementation of the legislative reforms “will be challenging and demand significant cultural and attitudinal changes, both strategically and in professional practice”.

The Act presents significant changes for local authorities which will be challenging to implement in the proposed timescale. Concerns have been raised by both local authorities and charities over the funding of the Act’s provisions and the sustainability of adult social care services. A recent article published in Community Care highlights such concerns among councils, noting that nine out of 10 councils believe key parts of the Act will be jeopardised if the government fails to provide local authorities with adequate funding for implementing the reforms.

According to London Councils, London is facing double the shortfall in funding to prepare for the Care Act than previously thought with proposed new funding arrangements unveiled by the government to leave the capital with a £36 million gap.

Moreover, a subsequent article in Community Care suggests that local authorities need to consider the training challenge now in order to negotiate the issues raised by the new funding reforms.

The main costs of the Act relate to improved legal rights for carers (rising to £175 million per annum). However, there may be additional costs, for example where local authorities face increased demand for services due to improved information. Greater clarification on the support available to carers could potentially increase the workload for social care professionals as the number of carers’ assessments could also increase.

The additional requirements of providing support to self-funders as well as carers could also take its toll on councils. Caroline May, business partner in finance at Havering LBC noted at a recent roundtable that:

“There are a lot of unknowns out there that will present us with financial challenges. I think culture shift is going to be huge across the board.”

The Association of Directors of Adult Social Care (ADASS), which represents local authorities, is unconvinced that local authorities can implement the changes required in the proposed timescale. In a joint report with the Local Government Association, they highlight the financial challenges local authorities face, particularly at a time of budget cuts and increasing demand for services. A recent inquiry into adult social care in England has highlighted that there was an 8% real terms cut in spending between 2010/11 and 2012/13; and demand for care provided by adults is projected to rise by over 50% between 2007 and 2032, while the supply of this care is projected to rise by only 20%, according to Carers UK.

Despite these funding issues, however, cost savings have also been identified in relation to public expenditure savings of improved support for carers, according to the DH’s recent impact assessment, which also states that these cost savings outweigh other new costs overall. The potential benefits of the Act for people with care and support needs which could also lead to savings were identified as: “improved wellbeing, better prevention of care and support need, greater clarity, consistency and equality of access to care and support and reduction of unmet need.”

It will undoubtedly be challenging to implement the provisions of the Care Act and it remains to be seen whether the funding provided will be adequate.

Only time will tell whether the proposed reforms will truly transform the currently outdated adult social care system.

 

Further reading

The Idox Information Service has a wealth of research reports, articles and case studies on a range of adult social care issues. Items we’ve recently summarised for our database include:

The Care Act and the care market: conference summary

Adult social care in England: sixth report of session 2014-15 (HC 518)

Using technology to deliver social care, IN Local Government Chronicle, No 7598 17 Jul 2014

Carers’ quality of life and experiences of adult social care support in England, IN Health and Social Care in the Community, Vol 22 No 4 Jul 2014

Transforming adult social care (improving efficiency in council social care services), IN Local Government Chronicle, 5 Jun 2014

Care Act 2014

Understanding personalisation: implications for social work, IN Journal of Social Work, Vol 14 No 3 May 2014

State of caring 2014

Care home top-up fees: research with local authorities

Making our health and care systems fit for an ageing population

N.B. Abstracts and full text access to subscription journal articles are only available to members of the Idox Information Service.

World Alzheimer’s Day: can we reduce dementia risk?

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Older woman with Alzheimer's in a chair

Image courtesy of Flickr user Vince Alongi using a Creative Commons license

By Steven McGinty

On the 21st September, Alzheimer’s organisations across the world will be carrying out events to raise awareness about Alzheimer’s and dementia. The event, a key part of World Alzheimer’s Month, was launched by Alzheimer’s Disease International (ADI) in 1994, with the aim of highlighting the tremendous work carried out by Alzheimer’s organisations.

Each year, a new theme is selected for World Alzheimer’s Month, and this year the focus will be on how we can reduce the risks of developing Alzheimer’s and dementia. In support of this event, I’ve decided to look at some of the statistics on dementia, as well as review the latest evidence on reducing the risks.

Continue reading →

The quest to find young carers: Carers Week 2014

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Cooking Togetherby Steven McGinty

This week, throughout the UK, there will be a host of events in support of Carers Week 2014. For the first time, the UK-wide annual awareness campaign is launching the Carers Week Quest, a new initiative to encourage improved collaborative working in local communities to reach out to carers.  It will also be the first time that the valuable role of #youngcarers is recognised, with the introduction of Young Carers Awareness Day on Friday. The theme for this year is ‘identifying carers’.  It is hoped that this week of events can help carers access the support they need, when they need it.  In support of #carersweek, Idox has decided to review the literature on young carers. Continue reading →