CARE OF THE OLDER PERSON: COMMENT

Older carers in the UK: who cares? Rona Dury

Senior Lecturer in Primary Care, University of Greenwich, London   

T

he long-term care system relies heavily on informal or unpaid carers. The 2011 census for England and Wales identified that there were around 5.8  million unpaid carers, 3.8  million of whom were providing between 1 and 19 hours of care a week (White, 2013). This is an increase of 600 000 unpaid carers since the 2001 census. Current estimates indicate that these carers subsidise the Health and Social Care Bill around £119  billion per year (Carers UK and the University of Leeds, 2011; White, 2013).

Understanding carers and caring Carers are defined as people delivering a range of help and support in a non-professional capacity, usually to a family member, friend or partner who is sick or disabled (Singleton et al, 2002).There are many reasons why the caring role is embraced. Providing care is often underpinned with lifelong love and affection as well as a sense of duty, and carers can derive personal satisfaction in delivering this role (Cassells et al, 2003). It has been established that carers play an extensive role in supporting and contributing to the physical care and support of those within their care. However, the role also involves other factors, such as pooling knowledge and energy, increasing confidence levels and working alongside the recipients of care (Buck et al, 2014).

Long-term care in the UK relies heavily on informal and unpaid carers. Statistical data regarding the number of carers in the 2001 Census compared with the 2011 Census identify an increase of around 600 000 carers. It is also significant that many of these carers are themselves in their late middle age. The reasons for taking on the caring role are varied, but there are significant potential physical, mental and financial issues associated with taking on the caring role. Positive benefits in terms of support provision for the carer do exist, but support services across the UK are variable. This article outlines the problems that may be faced by carers and provides directions for future developments and research into how this situation might be improved.

KEY WORDS

w Carers w Older person w Careers w Support w Physical wellbeing w Mental wellbeing

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Although it has been established that up to 15  million people in the UK have a long-term condition (Department of Health, 2012), it is significant that a third are over the age of 65 years (Carers UK, 2012). It is also noteworthy that carers of both sexes (as 17% of men account for the overall number of carers) are in the 50–64 age group themselves. This age group is also more likely to be caring for more than one person (Pickard 2008; Princess Royal Trust for Carers, 2011). Care in the community relies on an assumption that these carers are able and willing to take on such a role. This article seeks to explore some of the issues faced by carers.

Physical and mental effects of the caring role Taking on the caring role at the age of 50 and over can have significant effects on the carer. Care delivery can encompass a range of different activities and quite complex tasks, and 4 million people have physical and mental health problems that require support to meet these needs (Naylor et al, 2012). Caring for someone with physical needs alone can bring on direct and indirect stresses, but caring for those with physical and mental health problems increases the risk to the carer’s personal wellbeing and health (Schulz and Matire, 2004).

Carer–patient relationship The depth and quality of the relationship between patient and carer is considered to have a strong influence on whether a carer will continue in their caring role (Spruytte et al, 2001). Some carers identify changes in the relationship with those that they care for, or personality changes that may be short term, during an acute episode of an illness, or longer term. This has been cited as a causative factor in the deterioration of carers’ own mental health (Oyebode, 2003). Enhanced levels of anxiety and stress in the carer may be increased by physical or verbal abuse, lack of sleep and being woken at night, all of which have been deemed to cause high levels of stress and anxiety. These issues may apply in particular to those caring for people with dementia, adding to the emotional demands of the role (Cheffings, 2003; Moise et al, 2004).

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ABSTRACT

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CARE OF THE OLDER PERSON: COMMENT

Providing care is often underpinned with lifelong love and affection as well as a sense of duty, and carers can derive personal satisfaction in delivering this role

The health requirements of carers are not always sufficiently recognised or addressed (Cormac and Tinyani, 2006). Studies of comparative age ranges have identified that care-givers have poorer physical health, with many carers cancelling medical treatments or appointments due to their caring responsibilities (Princess Royal Trust for Carers, 2011). A study of female carers in the United States identified that carers providing over 9  hours of care per week doubled their risk of coronary disease (Schulz et al, 1995; Singleton et al, 2002; Lee et al, 2003).

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Financial implications of the caring role Many carers face financial concerns, with some accessing their private savings to meet the increased household costs associated with caring (Quince, 2011). These costs may include extra heating and laundry, or the purchase of specialist equipment or adaptations to the house to facilitate care. A recent study identified that 60% of people with dementia or caring for someone with dementia had not been offered funding. Furthermore, although funding is sometimes available, not everyone is aware of this or would necessarily be eligible (National Institute for Health and Care Excellence (NICE), 2010; Carers UK and University of Leeds, 2011).

Career prospects The carer’s career prospects may also be affected: figures show that one in five give up work in order to care owing to the pressures of balancing career responsibilities and employment (Buckner and Yeandle, 2007). A survey identi-

fied that carers who had either reduced their employment hours or stopped work were in some cases worse off by £10 000–£15 000 per year. Carers in the 55–64 age range in highly skilled roles may have suffered a reduction of £30 000, potentially placing many in a vulnerable financial situation (Carers UK and University of Leeds, 2011).

Support for carers The literature identifies that carers who are supported experience less ill-health and therefore deliver enhanced care (Singleton et al, 2002; Ablitt et al, 2009). Other benefits include reducing stress on the carer and the prevention of unnecessary admission of the care recipient to health or social care in the event of the carer becoming unwell (Conochie, 2011). However, only a third of carers report that they receive support or have received an assessment from a service provider (Alzheimer’s Society, 2012). The provision of information is an essential component in ensuring caring is sustainable and manageable (NICE,

‘Enhanced levels of anxiety and stress in the carer may be increased by physical or verbal abuse, lack of sleep and being woken at night, all of which have been deemed to cause high levels of stress and anxiety’.

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2010; Commission on Funding of Care and Support, 2011). However, accessing information can be difficult and carers often struggle to identify what services and support networks are available. These sentiments are upheld by a recent report by Carers UK (2013), which noted that 35% had been provided with the wrong advice, or were left unsure as to where help was available. Furthermore, when accessed, the range of services has been described as variable and non-standardised, ranging from information and advice focused on specific areas to the provision of more personal involvement and engagement elsewhere (Quince, 2011). However, it is recognised that without adequate support structures caring can be a socially isolating experience, with many going through emotional traumas including relationship break-up and estrangement from friends (Carers UK, 2013).

Conclusion This article has sought to explore some of the factors affecting the older carer. However, although support strategies for those caring for people with Alzheimer’s disease have been more clearly outlined in the public domain, this does not appear to be the case across the board. There are many caring for people with other conditions not receiving the recognition of support requirements. The UK’s ageing society has been acknowledged as a burden on care provision across health and social care, and it is recognised that the present care system could collapse without unpaid carers (Carers UK, 2010). Present demographic trends identify that, by 2017, the demand for informal care will exceed supply (Karlsson et al, 2006). However, society relies on older carers who should not face a choice between quality of life and health in their retirement years—a conundrum that also applies to the recipients of this care (Oyebode, 2003). It seems to have taken time for the care provider to have been recognised as a rightful recipient of support in the form of service time. However, more investigation is required to identify how carers can be supported in order for them to continue to provide such a valuable resource (Kersten et al, 2001). BJCN Ablitt A, Jones GV, Muers J (2009) Living with dementia: a systematic review of relationship factors. Aging Ment Health 13(4): 497–511. doi:

KEY POINTS

w Providing care is often underpinned with lifelong love and affection as well as a sense of duty

w Caring for someone with physical needs alone can bring on direct and

indirect stresses, but caring for those with physical and mental problems increases the risk to the carer’s personal wellbeing

w The health requirements of carers are not always sufficiently recognised or addressed

w Present demographic trends identify that, by 2017, the demand for informal care will exceed supply

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10.1080/13607860902774436 Alzheimer’s Society (2012) Carers: Looking after Yourself. Carers Support Factsheet 523LP. http://tinyurl.com/nnmnt9p (accessed 20 October 2014) Buck H, Harkness K, Wion R et al (2013) Caregivers’ contributions to heart failure self-care: a systematic review. Eur J Cardiovasc Nurs. Epub ahead of print Buckner L, Yeandle S (2007) Carers and Caring in EU Member States. Eurocarers, London Carers UK (2010) Tipping Point for Care: Time for a New Social Contract. Carers UK, London. http://tinyurl.com/ll9jdy6 (accessed 20 October 2014) Carers UK (2012) Facts about carers 2012. Policy Briefing. Carers UK, London. http://tinyurl.com/oft9yzq (accessed 20 October 2014) Carers UK (2013) Prepared to Care? Exploring the Impact of Caring on People’s Lives. Carers UK, London. http://tinyurl.com/k5juub7 (accessed 20 October 2014) Carers UK, University of Leeds (2011) Valuing Carers 2011: Calculating the Value of Carers’ Support. http://tinyurl.com/k7q9wxs (accessed 20 October 2014) Cassells C, Geront M, Watt F (2003) The impact of incontinence on older spousal caregivers. J Adv Nurs 42(6): 602–16 Cheffings J (2003) Report of the Princess Royal Trust for Carers. Princess Royal Trust for Carers, London Commission on Funding of Care and Support (2011) Fairer Care Funding: The Report of the Commission on Funding of Care and Support. Crown Copyright, London. http://tinyurl.com/na44bhl (accessed 20 October 2014) Conochie G (2011) Supporting Carers: The Case for Change. Princess Royal Trust for Carers and Crossroads Care, London. http://tinyurl.com/peaowhw (accessed 20 October 2014) Cormac I,Tinyani P (2006) Meeting the mental and physical healthcare needs of carers. Adv Psychiatr Treatment 12: 162–72. doi: 10.1192/apt.12.3.162 Department of Health (2012) Long-term conditions compendium of information, 3rd edn. http://tinyurl.com/n4hk7jx (accessed 20 October 2014) Karlsson M, Mayhew L, Plumb R, Rickaysen B (2006) Future costs for longterm care: cost projections for long-term care for older people in the United Kingdom. Health Policy 75(2): 187–213 Kersten P, McLellan L, George S (2001) Needs of carers of severely disabled people: are they identified and met adequately? Health Soc Care Community 9(4): 233–43 Lee SD, Colditz GA, Berkman IF, Kawachi I (2003) Caregiving and risk of coronary heart disease in US women. Am J Prevent Med 24(2): 113–19 Moise P, Schwarzinger M, Um M-Y (2004) Dementia care in 9 OECD countries: a comparative analysis. OECD Health Working Paper no. 13. http:// tinyurl.com/m4urgsr (accessed 20 October 2014) National Institute for Health and Care Excellence (2010) Quality Standards for Dementia. NICE, London. https://www.nice.org.uk/guidance/qs1# (accessed 20 October 2014) Naylor C, Parsonage M, McDaid D, Knapp M, Fossey M, Galea A (2012) Longterm Conditions and Mental Health: The Cost of Co-morbidities. The Kings Fund and Centre for Mental Health. http://tinyurl.com/nksj4uu (accessed 20 October 2014) Oyebode J (2003) Assessment of carers’ psychological needs. Adv Psychiatr Treatment 9: 45–53. doi: 10.1192/apt.9.1.45 Pickard L (2008) Informal care for older people provided by their adult children: projections of supply and demand to 2014 in England. PSSRU Discussion Paper 2515. http://tinyurl.com/lplm9qu (accessed 20 October 2014) Princess Royal Trust for Carers (2011) Always on Call, Always Concerned: A Survey of the Experiences of Older Carers. The Princess Royal Trust for Carers, London www.carers.org Quince C (2011) Support. Stay. Save: Care and Support of People with Dementia in their own Homes. Alzheimer’s Society, London. http://tinyurl.com/lys2g6g (accessed 20 October 2014) Schulz R, O’Brien AT, Bookwala I, Fleissner K (1995) Psychiatric and physical morbidity effects of dementia caregiving, prevalence correlates and causes. Gerontologist 35(6): 771–91 Schulz R, Martire LM (2004) Family caregiving of persons with dementia: prevalent health effects and support strategies. Am J Geriatr Psychiatry 12: 240–9 Singleton N, Maung NA, Cowie I, Sparks J, Bumpstead R, Meltzer H (2002) Mental Health of Carers. Office for National Statistics, London. http://tinyurl. com/knxukhc (accessed 20 October) Spruytte N,Van Audenhove C, Lammertyn F (2001) Predictors of institutionalization of cognitive-impaired elderly cared for by their relatives. Int J Geriatr Psychiatry 16(12): 1119–28 White C (2013) 2011 census analysis: provision of unpaid care in England and Wales, 2011. Office for National Statistics, London. http://tinyurl.com/pucakov (accessed 20 October 2014)

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CARE OF THE OLDER PERSON: COMMENT

British Journal of Community Nursing November 2014 Vol 19, No 11

h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 193.061.135.112 on October 14, 2015. For personal use only. No other uses without permission. . All rights rese

Older carers in the UK: who cares?

Long-term care in the UK relies heavily on informal and unpaid carers. Statistical data regarding the number of carers in the 2001 Census compared wit...
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