Basic Rights of Carers in the UK
Informal carers include those persons who provide unpaid care to the one who are in need. They are generally a family member or a friend. Some people suffer from conditions in which they are not able to perform their own work like people with disabilities or long illness, people suffering from dementia, drug addicts etc. Such people need continuous assistance, but some of them are not able to afford hospital bills. For such persons unpaid help or assistance is provided by the carers. According to a report, there are more than 6.5 million people in UK which are working as informal carers (carersuk, 2017). Among these 42% of carers are men and 58% are women. It is estimated that by the 2030 there will be more than 10 million carers in UK (Robards, et al., 2015).
Carers are of basically divided based upon their ages like young carers (up to 18 years), adult young carers (18-25), working aged carers (25-65) and older carers (over 65). They provide their services to people suffering from various conditions like physical disabilities, illness, dementia, learning disabilities, mentally ill people, drug addicts etc. In this essay the needs of adult young carers who give care to people suffering from dementia are discussed.
In UK, there are 376000 young adult carers aged between 15-25 years (carerstrust, 2015). Among these the carers aged between 16 to 18 years are more likely not to be involve in education and in employment. Most of the young adult carers take care of their family members because they feel a sense of moral responsibility. Many carers were struggling because of their caring roles in university and college. Some were even dropped out for this reason. Some carers were also suffering from mental illness. The general problems faced by the young carers include problem with education, guilt of resentment, lack of recognition, problems in transition to adulthood.
The basic rights of the carers are given in the Carers (Recognition and Services) Act 1995, they are:
- Local authority should assess the needs of carers while making an assessment of the care receiver.
- If the condition of the care receiver changes the needs of the carers must be re-assessed.
- To consider the results of the assessment while making decisions about the care receiver.
The definition given for the Act is, a carer is: a parent providing care to a disabled child or a husband or wife providing care to their spouse or a child (less than 18 years) providing care to a family or another person or an adult providing care to another person.
All the carers are covered under this act. The carers who are not living with the care receiver and the carers who are not related with the person to whom care is provided, comes under the act. According to the NHS Act 1977, local authorities can provide some services like information and support group to the carers. These services come under the category of basic services and it must be provided to every carer irrespective of their caring capability. According to the Disabled Persons (Services and Representation) Act 1986, the local authorities must consider the capability of the carer before providing services to the disabled person.
Impact of Caregiving on Career of Carers
According to the Work and Families Act 2006, a carer can ask the employer to have the liberty of flexible working hours. It was observed that the stress level of informal carer is above average which is affecting them both physically and mentally. The carers who have flexible working hours have lower stress hours as compared to no-flexible working hours. This has a positive effect on their health. NHS employees, who are carers, were also benefitted from this act (legislation, 1995).
Dementia is defined as the loss of functional and social abilities. It is a group of symptoms that occurs when brain cell stop working. Due to this disease a person is not able to daily works and as the disease grows they depend on the care of other persons (Nhs, 2015). It becomes impossible for them to participate in social activities. This leads to the need of full day care for several years. There is formal or professional care, but it is limited and many patients are not able to afford it. As a result, people suffering from dementia need informal care. Generally it is provided by their spouse, children and friends. Informal care is provided to them not only when they are at home but also when they are admitted in a care facility for a long term. For the people suffering from dementia, the carers will be their main support for assistance.
The assistance given by the carer depends upon the condition and increase in person’s dementia. It also depends upon the capabilities of the carer and what kind of assistance is available. Full time care of such persons may result in socially isolated condition for the carers (The Alzheimer’s society, 2018). Taking care of such people is a difficult task. IT includes change in behaviour and personality and in some case aggression. According to a study during initial years of dementia care was provided by friends and neighbours, but during the later stages of the disease (greater than 1 year), care was mostly provided by the family members. The persons suffering from later stages dementia were comparatively older and they used to live in either nursing home or elderly home (The Guardian, 2018).
Caring activities of carers can have impact on their career. There are chances that they are less likely to be employed. There is a 50% chance that they would be home makers as compared to non-carers. Studies have shown that when carers are working, they work two hours per week as an average less than non-carers and are also to be over-represented at part time work. These activities can impact on their career continuity and their job selection. This shows that why most of the carers stick to temporary works. According to a survey conducted in United Kingdom carers are 30% more like to have inclination towards temporary job. Providing someone with care is a very difficult task and it became more difficult with full-time job or paid employment of any kind. The jobs which are available may not have flexible hours or shifts.
Impact of Caregiving on Mental Health of Carers
They may also not have leave options to fulfil their caring responsibilities. Sometime caring duties become unpredictable which can lead to their absence from work. Decision within the families like who will become the carer or whether to take formal carer depends upon the persons in the family and earnings potential. As most of the carers are older in age and tend to have lower education. Impact on carer’s life due to caring depends upon the intensity of the care they provide. Generally, if they provide care more than 20 hours per week it can impact their life. If the caring hours are less than that, then the carer can combine work and caring responsibilities together. In United Kingdom there is reduction in working hours according to the intensity of care (Schmitz, and Westphal, 2017). If there is no flexibility in working hours for the carers there is a chance that they like to stop work rather than reducing work hours.
Informal carers often experience a penalty in the form of wages which results in the loss of opportunities for career development. A penalty may also be a result of their low commitment towards employment. One more aspect is that the carers may choose a low paid salary job or work to balance their family responsibilities. Hence, it shows that working age carers are more likely to be at a risk of poverty as compared to other age group of carers. Women carer is at higher risk poverty compared to men, since poverty is measured at the level of the household and it is the summation of income from various sources. Lower employment rates and lower working hours for carers can be linked with higher poverty which in result leads to lower annual income. Another reason may be the household composition of the carers, in which few may have earnings from work (Pickard, King, and Knapp, 2015).
Informal carers provide a great service to the people and society by looking after family members and friends, but there is also a great concern associated with it. There is also a chance that intensive care will have an impact on the mental health of the carer. They may have increment in stress, strain and heath deterioration of the carer. They are completely isolated from the society and they have no support which may result in mental health problems. According to various surveys, carers with low intensity of caring were likely to be less affected from mental health problems as compared to carers with high intensity of caring. Problems related to mental illness also depends on the age of the carer. Older carers are more likely to be affected by mental illness. It also depends on the previous mental status of the carer.
Challenges in Caregiving
The more time spent in caregiving can result in increased demand of care and hence increase in sense of burden. There is not only the burden of caregiving but a carer must also learn to be compatible as the disease progress in the patient. A carer has to learn about the behavioural change in the patient with dementia. Carers have reported that they had losses within the family. Maximum carers are not well prepared to take care. They had poor knowledge of formal services available. They were not able to plan according to the needs of care receiver. Hence it is essential to provide support to the informal carers for their health and to prevent the care burden on them. The problems faced by the carers with dementia people include their changing behaviour, emotional demanding and unsafe situations with dementia people, fewer contacts with friends (social isolation) and loneliness (Greenwood, Mezey, and Smith, 2018).
Informal carers must be provided with a break from caring. This will give them a chance to focus on their own issues and to socialize with other people properly. Information about the needs and treatment of the care receiver must also be provided to the carer, especially with the medication of the patient (Gov.uk, 2014). They need to know that how and when the medication is needed and what are the side effects of that medication. They should also be well informed about the progress of the disease so that they will know when they have to use the professional help. In case of the people suffering from dementia this case becomes crucial (Ageuk, 2017). All carers want to be known, not just for their services, but also as a person. Their social and emotional needs must also be needed to be taken care of. Carers UK have shown that when a doctor treats both the carer and the patient together and shows concern for the carer, the level of satisfaction of carer increases. Carers must be included in every plan related to the patient as they know the patient very well. A carer also needs someone to talk to. This can be a friend, a fellow carer or a professional. They can also join a support group if they find it convenient (McCabe, You, and Tatangelo, 2016).
Formal support is very much needed by the informal carers taking care for the persons suffering from dementia (Dawson, et al., 2015). There are very less studies for the need of informal carers. Some of them have shown that they need a change during the process of illness. As the problem of dementia increases there are more problems faced by the carers then the early stages of the disease (Carbonneau, Caron, and Desrosiers, 2010). They also need additional support or professional support during the later stages of dementia. By providing the external support to the caregivers it has been observed that they develop strategies to perform their work properly. They are also able to handle the changing condition of the patient (Pini, et al., 2018).
Conclusion
The services provided for the carers must be made keeping in mind that they need to be flexible. They must be varied and changed accordingly to the person to whom care is provided. The basic resources provided to the carers must include assessment, information, counselling, training for changing behaviour, support groups, etc. For older people suffering from dementia joint services must be provided and their carers must be focus on providing them to live a normal life in their own home as long as possible. Services offered depends upon how the carers see themselves. Some carers do not call themselves as carer and the care they provide is due to the social obligations (e.g. spouse, parent and child). Community based initiatives that encourage social integration and provide care services must be taken. Services that are accessible by both the carer and people with dementia must me promoted.
References
Ageuk, (2017) Caring for someone with dementia.
Carbonneau, H., Caron, C., and Desrosiers, J. (2010) Development of a conceptual framework of positive aspects of caregiving in dementia. Dementia , 9(3), pp. 327–353
Carerstrust (2015) About young adult carers.
Carersuk. (2017) Make connections, get support.
Dawson, A., Bowes, A., Kelly, F., Velze, K. and Richard, W., (2015) Evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach. BMC Geriatrics, 15, pp. 15-39.
Gov.uk, (2014) Informal carers: recognising and supporting their needs.
Greenwood, N., Mezey, G. and Smith, R., (2018) Social exclusion in adult informal carers: A systematic narrative review of the experiences of informal carers of people with dementia and mental illness. Maturitas, 112, pp. 39-45.
Legislation (1995) Carers (Recognition and Services) Act 1995.
McCabe, M., You, E., and Tatangelo, G., (2016) Hearing their voice: a systematic review of dementia family caregivers’ needs. The Gerontologist , 56(5), pp. e70–e88
Nhs, (2015) Help and support for people with dementia.
Pickard, L., King, D. and Knapp, M., (2015) The ‘visibility’ of unpaid care in England. Journal of Social Work, 16(3), pp. 263-282.
Pini, S., Ingleson, E., Megson, M., Clare, L., Wright, P. and Oyebode, J.R., (2018) A Needs-led Framework for Understanding the Impact of Caring for a Family Member With Dementia. The Gerontologist, 58(2), pp. e68–e77.
Robards, J., Vlachantoni, A., Evandrou, M. and Falkingham, J., (2015) Informal caring in England and Wales – Stability and transition between 2001 and 2011. Advances in Life Course Research, 24, pp. 21-33.
Schmitz, H. and Westphal, M., (2017) Informal care and long-term labor market outcomes. Journal of Health Economics, 56, pp. 1-18.
The Alzheimer’s society, (2018) Support for people with dementia: the care needs assessment
The Guardian (2018) Dementia research must study care as well as cure.
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