The 2011 Census identified that 5.4 million people in England were providing unpaid care, with over a third of all carers providing 20 or more hours of care a week. As many carers don’t self-identify the true figure is likely to be much higher.
Carers account for around one in ten of the population, and are more likely to be female than male with an approximate 1.3 female carers for every male carer. The reported figures are approximately the same proportion of the population as those in the previous Census (2001), however there has been an overall increase of 5% on 2001 figures.
It is clear from the 2011 Census that the general health of carers deteriorates incrementally with the increasing hours of care provided. 5.2% of carers reported their own health as ‘not good’ and this rose to almost 16% among those caring for more than 50 hours a week – see fig 1. below.
Fig 1. Carers’s self-reported perception of health (as a % of the total in each category) in relation to the number of hours of unpaid care provided.
While 55% of female adult carers and 44.9% of male adult carers reported they were economically active, only 12.1% of women and 9.3% of men were working full-time alongside caring responsibilities and only 1.2% of women and 1% of men reported they were in full-time employment while providing 50 hours or more care a week.
Irrespective of background, gender and age it is usually the condition of the cared-for person that most impacts on the health and wellbeing of the carer. Conditions such as mental health problems, dementia, learning disabilities, physical and sensory impairments and substance misuse contribute to increased use of health and social services and increased social isolation for both the carer and the cared for. Such circumstances also affect the quality of care given, due to the increased burden they place on the carer.
Carers UK’s The State of Caring
annual surveys and the Caring & Family Finances Inquiry
(Feb 2014) evidenced that many carers of working age feel forced to give up work to care and after a period of absence many find it difficult to return to the labour market. The State of Caring survey in 2011 found that of carers who had given up work or reduced their working hours to care, a fifth were £10-15k a year worse off and a further fifth were losing £15-20k annually. Many older working carers aged 55-64 years of age were likely to lose at least £30k a year.
The highest level of carers’ needs were reported among carers:
With mental health problems of their own
Carers from Asian/British Asian Communities
Under the age of 64
And among those caring for periods of 15 -20 years.
The vast majority of carers in this country are not in touch with social care.
Different groups of carers can have different experiences and needs. Young carers can experience substantial physical, emotional or social problems, and encounter difficulties in school and elsewhere (SCIE, 2005). The amount and type of care that young carers provide can vary greatly, and does not predict how far the health or well-being of each young carer may be affected.
In addition, young carers have significantly lower educational attainment at GCSE level, and are more likely than the national average to be not in education, employment or training (NEET) between the ages of 16 and 19 (Children’s Society, 2013).
Carers of people with people with learning difficulties are often parents or other relatives of a learning-disabled individual, who may now be an adult. These carers often face a life-long caring role as the life expectancy of people with learning disabilities has increased significantly, and more people with learning disabilities are now expected to outlive their parents.
As the person with learning difficulties ages, their needs, and the needs of their elderly parent, may lead to mutual caring situations. Often in such families the carer and the person with learning difficulties only come to the attention of Adult Social Care when a crisis occurs, for example, when the carer or adult person with learning disabilities becomes ill, or physically incapacitated, or is suffering from dementia. In order to offer support, it’s important to identify this hidden population of carers before a crisis occurs.
Mencap’s report ‘Housing for People with a Learning Disability’ states 83% of carers whose son or daughter lives with them have not planned for when they are no longer able to deliver care. The report goes on to state that even older carers are not planning for the future, with 56% of carers aged over 70 whose son or daughter lives with them having not planned for when they are no longer able to care.
Nationally, approximately 13% of carers care for someone with a mental health condition. Such carers can be reluctant to discuss their role due to the stigma still attached to mental health. Mental health conditions can fluctuate, are often misunderstood, and can cause considerable emotional distress to carers. The issues of conﬁdentiality and information-sharing between mental health professionals and carers are difﬁcult and complex to resolve as healthcare staff have a duty to both patients and carers not to disclose confidential information.
Those caring for someone with dementia comprise 11% of all the carers in the UK. Dementia is one of the main causes of disability in later life and the number of people with dementia is rising yearly as the population ages. Dementia can affect people of any age but is most common in older people, particularly those aged over 65 years.
Dementia places a particular burden on carers and family members. Timely diagnosis and intervention is helpful, as it enables the person with dementia and their carer/s to come to terms with the disease and make plans for the future. Many of those with severe dementia, especially those over 85 years, have a combination of mental and physical problems. Many of the carers of older people with dementia are themselves elderly up to 60 per cent of whom are husbands, wives or partners.
Carers of people with dementia generally experience greater stress than carers of people with most other support needs with nearly half having some kind of mental health problem themselves. However carer support and education can enable more people to live at home for longer and prevent carer breakdown, which is a major cause of people needing to move into long-term care.
2% of the population experience addiction in family at some time with the rate in Nottingham similar to that in other cities. The contribution of families and their role in treatment/detox is recognised. Due to the stigma and shame surrounding drug or alcohol use, carers of people with substance misuse issues don’t tend to engage with carer support services or carers assessments, only with substance misuse services.
There is concern that young carers of parent with substance misuse are remaining hidden due to fear of the involvement of outside agencies, not wishing to “betray” their parents, fear of losing their parents, whilst parents may have concerns about their children being taken into care.