Carers of older people and those with long-term conditions in the community are often the spouses of the people they care for and are older people themselves. Jack and O’Brien (2010) highlight the exhaustive nature of the caring role, and it is sug- gested that it is this very group who cope least well with the responsibility of caring, physically and emotionally, for a dependent person. A lack of support, education, ability or willingness can often result in carer depression and illness, fatigue and mortality. It is reported in the United Kingdom that carers can feel isolated, par- ticularly partner carers, who might live alone with their dependent spouse and often in poverty, or carers who live in a rural remote situation. Sometimes carers exhibit reluctance to admit that they are having difficulty coping because they are unaware of the help and support that can be offered to assist in the home situation (Lawrence et al., 2008). The effective identification of carers and appropriate assess- ment and interventions can ease the role of caring for those who are struggling, it can avoid hospital admission and reduce isolation and burnout, thus promoting quality of life for the carer as well as sustaining the carer relationship and quality of life for the dependent person.
Forty percent of carers have health problems (Royal College of General Practitio- ners, 2011). Yet although the health and ability of the carer to cope are essential to enable the dependent person to stay at home and receive the assistance he or she needs, it is not uncommon for carers to dismiss their own health and well-being in order to fulfil the caring role. In 2015, the value of healthcare spending will be £134 billion compared to the cost of the unpaid care we provide for friends and family in
Reflection point
Consider the role of a carer you have known, either in the clinical area or personally.
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What support did that carer receive?•
What other life commitments did that carer have to manage?•
What are your thoughts on the definition of the terms ‘formal carer’ and‘informal carer’?
ACTIVITY 9.3
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the United Kingdom which is £132 billion, compared to just £68 billion in 2001 (Carers UK, 2015). The majority of carers have no income coming into the home except for benefits. Four hundred thousand carers balance full-time work, while also providing over 20 hours of care per week. Working carers have been found to compromise their career prospects because of their caring responsibilities, and according to Milne et al. (2013) two-thirds of carers give up work to care on a full- time basis and this incurs financial loss.
Financial and emotional impact of caring
Nearly 8 out of 10 families caring for someone say it has had an impact on their finances (Carer UK, 2014b). Loss of earnings and the day-to-day financial costs of caring can increase by simple daily life expenditure, for example, higher laundry bills, greater heating costs and transportation expenses and this increase in expenses can lead to carer poverty. This may lead to carers having to make drastic compro- mises, for example, in their daily diet and use and consumption of fuel. Accumula- tion of debt in order to survive at a basic level can have an impact on a carer’s health.
The benefit system is complicated and has been subject to a lot of change in recent years. The main financial assistance available to carers is Carer’s Allowance and carers may be eligible if they provide care for someone for 35 hours a week or more.
There are also benefits to help with the long-term costs of living with illness or dis- ability as shown in Table 9.1.
As the number of people caring continues to rise, it is vital that carers are sign- posted to the correct information and advice on financial and practical support.
Many are unaware of their rights, leaving millions of pounds in carers’ benefits to go unclaimed. Carers UK have a telephone advice line and an online benefits checker to enable carers to claim the benefits they are entitled to (see Further Resources). Face-to-face appointments are available from local statutory and volun- tary services in most UK areas. Special rules apply to some groups of people such as students, those under 18 years, people living permanently in residential care, UK nationals living overseas and people who are not British or Irish nationals (Carers UK, 2014a). Some further financial assistance and benefits are shown in Table 9.2.
National Insurance credit contributions are paid for every week that Carers Allow- ance is paid. Carers Credits are also available for carers who are not eligible for Carers Allowance but who may be entitled to claim National Insurance contribution credits (Carers UK, 2014a). Other financial help available is shown in Table 9.3.
Table 9.1 Carers allowance
Carer’s allowance For those who care for someone for 35 hours a week or more Personal Independence Payment (PIP) For people aged 16–64 years old Disability Living Allowance (DLA) For children aged under 16 years old Attendance Allowance For people aged 65 years and over Source: Carers UK (2014a) Carers Rights Guide 2014/15 Looking After Someone. London: Carers.
For those in receipt of certain benefits, help with other costs is available such as:
NHS health costs – this includes free prescriptions, free dental treatment, free NHS eye tests and vouchers to help with the cost of glasses/contact lenses. Fares to hospital for treatment can be claimed in some instances when travelling as a com- panion with someone who needs to travel for medical reasons.
Other grants and loans which were previously available from the Social Fund have been abolished and replaced with local provision from local councils.
Under new arrangements, community care assessments are available for people who require care from someone else to determine what help is needed and how social services can help. Community care assessments look at the role of the carer and the help the carer provides.
Carers’ assessments are available from social services for people who provide
‘regular and substantial’ care for someone else such as a partner, friend or relative.
These assessments are available from April 2015 for anyone who feels that the care they provide will impact on their life, work and family.
The government is moving towards enabling people to choose and control the support services they receive through direct payments and personal budgets. Direct payments and personal budgets are made instead of community social care services and are designed to give the person needing care more choice and control, allowing them to purchase their own service providers (Carers UK, 2014a).
Table 9.2 Other financial assistance and benefits Other financial assistance and benefits
• Council tax reduction – Available from your local authority council benefits depart- ment
• Disabled facilities grant – For people who may need to adapt the home to make it suitable for a disabled person
• Disability reduction scheme – This scheme may apply when the home environment has had work carried out on it to help you or someone else living at the property live there with a disability
• Council tax discounts – People who live alone qualify for a 25% Council Tax discount Source: Carers UK (2014a) Carers Rights Guide 2014/15 Looking After Someone. London: Carers.
Table 9.3 Other financial help her Financial Help Other financial help
Winter Fuel Payments Those of qualifying age may be entitled to
£100–300 Winter Fuel Payment to help pay winter bills.
Warm Home Discount The Warm Home Discount scheme means
you could get a discount on your electric- ity bill if you meet certain criteria.
Cold Weather Payments Those in receipt of certain benefits may be able to get a Cold Weather Payment for each week that the local average tempera- ture is at freezing or below.
Source: Carers UK (2014a) Carers Rights Guide 2014/15 Looking After Someone. London: Carers.
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The impact of caring on adult and young carers
For older people, generational beliefs about their role as a spouse, confusion between caring for and caring about their partner, shame and the fear of change can stop carers who are exposed to repeated difficulties from seeking the help and support they need. Research conducted by Rees et al. (2001) states that when they analysed the data on carer assessment, the quality of life of the carer tended to be ‘worse than that of the patient’.
For the community nurse assessing the situation and establishing a balance between the carer getting the support he or she needs to care for the dependent person and establishing that the carer is doing so because he or she wants to is essential. Buhr et al. (2006) identified that the quality of life and health status of the carer in the year prior to the dependent person being admitted to a residential placement predicts the likelihood of admission of the cared-for person into institu- tional care. Any extra pressure on the carer or perceived extra pressure by the carer may eventually lead to the breakdown of a care situation. This is a particularly important issue when the carer is hidden and no one has any insight into the carer’s needs or the treatment the disabled/unwell person is receiving. It is essential for community nurses therefore to understand different groups of carers and different carer experiences if they are to offer the support that carers need to fulfil the role they have in today’s society. It is important to identify the ‘hidden carers’: carers who are in the majority, who receive no help, no support, are not aware what help they are entitled to and do not know how to access assistance and/or services. In some areas of the United Kingdom, this is being done through the creation of a ‘car- ers point’ in the local general hospital, where carers can go to identify themselves, get advice and information. General Practice is also identifying carers in the GP surgery, while the acute sector admission and assessment process now documents if someone is a carer, or if someone depends on a carer.
It is important for community practitioners to have effective working relation- ships and regular communication with the wider multidisciplinary team. Inter- professional appreciation of roles and responsibilities and what each can offer and what they can offer together will effectively use resources to highlight and help more known and unidentified carers.
Carers from ethnic minority populations have traditionally been less likely to access health or social services (Laing and Sprung, 2013). It could be argued that it is those populations who cope best with the caring role, identifying it as a natural and expected
Reflection point
•
What criteria do a carer need to meet to be eligible for Carers Allowance?•
What other financial assistance and benefits may be available to carers to help them meet long-term costs?•
What other financial assistance and benefits may a carer be eligible for?•
Carer assessments are available for those who provide ‘regular and substan- tial’ care for someone else. What constitutes ‘regular and substantial’ care?ACTIVITY 9.4
role, especially in marital or parental relationships. This positive perspective helps to balance out feelings of carer strain, isolation and fear. For many carers, whatever their relationship or background, the role of carer can be viewed as one that gives satisfaction and fulfilment. It can be perceived as being virtuous in nature. There is some evidence to suggest that those who cope less well with the caring role and find it more difficult to adapt to are white, well-educated women (Lawrence et al., 2008). However, it is the white, well-educated women who are also the most able to voice their needs and diffi- culties and gain access to health and social services in order to acquire support. For those adult children who now care for parents, there might be a desire to give back the care and support shown to them as they were growing up.
The change in relationship between carer and the cared-for person is one of the most complex areas for the community nurse to offer support with. Often there has been some role reversal or a dramatic change in role (e.g. a child caring for a parent, husband caring for his wife). Each situation has to be assessed individually. Some carers will be reluctant to perform personal tasks, while others feel quite comfort- able with the role. For some carers, the change in roles and relationships as one person becomes more dependent on another is acceptable, whereas for others it represents the end of the relationship that was (Laing and Sprung, 2013).
For all carers the unpredictable nature of the role means that they focus on cop- ing with the daily activities of caring and have little emotional or mental support to plan for the future (e.g. plan a holiday). Most carers who live with the person they are caring for find the constant need to be present and vigilant the most taxing characteristic of the role.
It can be difficult for a carer to take a step back and put plans in place to take a short break, arrange day care or find a carers’ support group. The community nurs- ing team can be invaluable in providing advice, objectivity, empathy and direction to give some balance to the carer’s life and identity.
Some carers look after a dependent person because they see residential and nurs- ing home care as a last resort and one that has negative connotations (Neville et al., 2015). However, the use of respite care and other services can positively enhance the carer’s experience and enable the care situation at home to continue for longer, per- haps avoiding a crisis.
Perceptions of whether caring is predominantly a burden or has some reward are closely tied with cultural background, as has already been mentioned, and also reli- gious beliefs and life expectations. Carer empowerment through education, support and recognition is a significant part of the community nursing team role.
Adult carers provide care because they want to help the people they care about and because their child, partner, relative or friend could not manage without that help. They often have to juggle the support and care they give with other responsi- bilities, in a difficult balancing act. However, for young carers it is often a way of life that develops insidiously and these young children/young adults often don’t realise that they are carers (The Children’s Society, 2013). Despite the emphasis on the use of integrated care with strategic needs assessment and a strong personalisation agenda based on emerging evidence of effective early intervention in identifying,
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involving and supporting carers, for many young carers, looking after their own health, combining caring with schooling, or getting access to training, or simply having time to take a break or go away for the weekend can be a major challenge (Department of Health, 2010a,b, 2012, 2013a,b). It is these aspects of a young carer’s needs that could be better supported and navigated with the assistance of the com- munity nursing team, teachers and other health and social care professionals that they come into contact with (Sprung and Laing, 2015).
The young carer populations are more predisposed to having problems at school with attendance, engaging in work and in attaining qualifications. They are often isolated from their peer group or bullied. Young carers feel that their difficulties are not understood, and they feel unsupported by professionals from healthcare, social care and education. They can experience feelings of guilt and resentment because of the conflict between the needs of the person they are caring for and their own life- style, emotional and recreational needs. This all accumulates, and problems often occur when they move into adulthood, finding employment, living independently and establishing relationships (The Children’s Society, 2013).
The difficulties that young carers can experience can be expressed through dis- ruptive or antisocial behaviour, drug taking, depression, ill health, and so forth.
Although it cannot be said that young people should not be in a caring role at all, because each situation is unique, the community nursing team does have an impor- tant role to play in the identification, assessment and support of young carers, together with local authority, education and voluntary services. The difficulty is that one of the issues of caregiving that can be ignored or hidden is that carers expe- rience difficult behaviours on a frequent and regular basis, leading to carer anxiety, grief and a breakdown in the caring relationship.
The definition of difficult behaviours is not clear – it can range from something as simple as the frustration created by the dependent person refusing to eat after requesting something specific for lunch, or it can be as extreme as violence, spitting, deliberate defeacation, and so forth. Difficult behaviour that is repeated in the home environment is a stress that may well contribute to the challenge of caring. If one person becomes more dependent on the other and the balance of the close relation- ship, such as a partner or spousal relationship, changes, the carer’s patience and care satisfaction can be lowered when he or she is subject to difficult behaviours (Laing and Sprung, 2013).
Carers sometimes do not identify themselves as being subject to abusive behav- iours because of the perceived lack of intention to harm by the perpetrator, for example, in dementia/mental illness (Mowlam et al., 2007). In a study by Zink et al. (2006) looking at the mistreatment of older partner female carers, it was identi- fied that mistreatment of a carer often takes place in relationships when relational change occurs, for example, the spouse becomes a carer and the relationship status and balance are altered. In relationships where historically there has been evidence of physical or sexual mistreatment from the dependent person, the abusive behav- iour continues, but often changes in nature. Also as spousal carers age, they may actually become more psychologically vulnerable than before.