Carers (health and wellbeing needs in South Tyneside)

Carer Health and Wellbeing

• The impact of caring on carers' physical, mental and psychological health is well-documented. However, the evidence indicates that the relationship between caregiving and health is neither linear nor causal, and typically the impact is mediated by a range of factors. These include:

• The intensity of care (carers providing at least 20 hours of support a week are at greater risk)
  • Being a co-resident carer, spouse carer and / or female
  • The number of competing demands carers face (e.g. the simultaneous demands of paid employment and other family responsibilities alongside caring)
  • Individuals' coping skills and resources, and the support they - and the cared for person - receives from other family members, the wider community and formal services.^[iv]
• According to the 2011 Census, almost 4 million of the UK's carers care for 1 - 19 hours each week, whilst 775,000 provide 20 - 49 hours and 1.4 million provide 50 hours or more unpaid care.^[v]
• There is also strong evidence of a trend towards individual carers providing more hours of care per week. The numbers caring round the clock (i.e. for 50 or more hours or more each week) are rising faster than the general carer population - an increase of 25% in the last ten years compared to an 11% rise in the total number of carers.
• According to the Personal Social Services Survey of Adult Carers in England 2016 - 17, over a third of carers (36%) are caring for over 100 hours a week.
• However, the impact of caring is not just dictated by the number of hours of care provided. If a carer is working full-time, combining caring with looking after young children, or having to travel long distances to provide care, then even having to provide a few hours of care a week can have a serious impact on their life.
• The pressures of caring can take a toll on carers' physical and mental health. The 2011 Census shows that, in England and Wales alone, almost 390,000 carers report being in bad health.
• Carers Week research from 2018 found that 6 out of 10 people (61%) said their physical health has worsened as a result of caring, while 7 out of 10 (72%) said they have experienced mental ill health.
• This impact is often exacerbated by carers being unable to find time for medical check-ups or treatment, with two in five carers saying that they were forced to put off treatment because of their caring responsibilities - unable to trust or find suitable and affordable replacement care.
• This information was echoed by the 2019 GP Patient Survey which found that carers were more likely to report having health problems compared with the general public, as was also found in the 2018 survey. Carers are more likely to report having a long term condition, disability or illness - 63% of carers compared to 51% of non-carers. In addition 63% of carers reported that their condition led to trouble with day to day activity compared to 58% of non-carers. This difference was even higher for carers, who care for more than 50 hours a week, 71% of whom reported having a long term condition, disability or illness.

Working and Caring

• There has been an increasing policy focus on carers and employment matters in recent years, highlighting the need for greater 'carer awareness' by employers and the need for carer-friendly workplaces. The role of assistive technology in supporting carers has also received greater attention.
• Caring can have a long-term impact on ability to work, as a loss of skills, knowledge, experience and confidence make returning to work when caring ends extremely challenging. Evidence from Carers UK's Caring and Family Finances Inquiry indicated that former carers, who are of working age, remain significantly less likely to be in work than non-carers of working age. The loss of earnings, savings and pension contributions can mean carers face long-term financial hardship into retirement.
• A new public polling from YouGov plc, commissioned by Carers UK, looks at the impact the ageing population is having among those who are juggling work while providing unpaid care, how the world of work needs to adapt and the consequences if it does not.
• Some of the key findings from the research are:
  • The number of those juggling work and care appears to be far higher than previously thought - around 4.87 million (compared with 3 million in the Census 2011). This is one in seven of all workers, compared with the previous figures of one in nine workers.
  • The number giving up work to care has increased from 2.3 million in 2013 to 2.6 million, a rise of 300,000 people; nearly a 12% increase.
  • Nearly half a million people (468,000) have given up work over the past two years as a result of caring. This equates to around 600 people every day. Those over the age of 45 were most likely to have given up work to provide care.
  • There are lower numbers of people juggling work and care in the private sector (13%) compared to the public sector (19%).
• Carers managing to juggle work and care describe having to forgo promotion or they miss out on job opportunities because they cannot increase working hours or move to take up a new position.

Loneliness and Social Isolation

• Carers often report becoming isolated as a result of their caring responsibilities. Carers often attribute this to a lack of understanding about their caring role as well as leaving paid work and being unable to take time off from caring resulting in losing touch with friends, colleagues and family members.
• In addition to direct discrimination as a result of the condition of the person needing care, the
• Equality Act 2010 also recognises that carers can face indirect discrimination as a result of their association with disability.
• In 2013 our State of Caring survey of carers who were more likely to be caring for over 50 hours a week highlighted how many carers care alone, without support - with 37% saying they cared without any support from services or from friends and family, and a further 29% who cared with support from friends and family but none from services.
• In 2017, State of Caring survey results showed that 4 in 10 carers said they had not had a full day off from caring in over a year and 25% had not had a full day off in the last five years.

Young Carers/ Young Adult Carers

• A young carer is someone under 18 who helps look after someone in their family, or a friend, who is ill, disabled or misuses drugs or alcohol. It is estimated that there are about 700,000 young carers in the UK.^[vi]
• There are estimated to be at least 376,000 young adult carers in the UK aged 16-25, according to census figures. Many young people find early adulthood difficult with the responsibilities that caring brings, this time in life can be even tougher. Many young carers face significant barriers and obstacles in education and wellbeing.
• The Carers Trust^[viii] has outlined some key facts about young carers below:
  • 68% of young carers are bullied in schools.
  • Young Carers miss on average 48 days of school due to bullying because they care for someone.
  • Young adult carers aged between 16 and 18 years are twice as likely to be not in education, employment, or training (NEET).
  • 56% of young adult carers in college or university were struggling because of their caring role.
  • 45% of young adult carers reported that they have mental health problems.
• In June 2020 Carers Trust^[ix] asked children and young people aged between 12 and 25 about their experiences of caring during the pandemic, 961 responded.  Key findings included:
  • 40% of young carers and 59% of young adult carers say their mental health is worse since Coronavirus.
  • 67% of young carers and 78% of young adult carers are more worried about the future since Coronavirus.
  • 66% of young carers and 74% of young adult carers are feeling more stressed since Coronavirus.
  •  69% of both young carers and young adult carers are feeling less connected to others since Coronavirus.
  • 11% of young carers and 19.7% of young adult carers report an increase of 30 hours or more in the amount of time they spend caring per week.
  • 58% of young carers who are caring for longer since Coronavirus are spending on average ten hours a week more on their caring responsibilities. Among young adult carers the proportion is even higher at 63.6%.
  • 7.74% of young carers and 14.94% of young adult carers who responded to the survey, said that they are now spending over 90 hours a week caring for a family member or friend.

Ageing Population with Complex/Long Term Needs

• The number of people in the UK aged 85 or older who require round-the-clock help to eat, dress, wash and go to the toilet will almost double over the next 20 years, research has suggested, highlighting the explosion in social care needs.
• An estimated 446,000 of over-85s will have "high dependency" care needs by 2035, up from 233,000 in 2015, and equivalent to 10% of all men and 20% of all women aged 85 and over, according to a 2019 study.^[x]
• Overall, more than 1 million people aged 65 or over will require intensive social care assistance by 2035, up from 783,000 in 2015, it predicted, with increasing numbers of people living into old age with multiple long-term conditions.
• Those who have dementia and at least two other major health conditions, such as obesity or diabetes, will double over the next two decades, it estimated, suggesting an extra 500,000 people will need complex forms of care.

Carers from minority ethnic backgrounds

• Children who come from an ethnic minority background who care for ill or disabled relatives are more likely than other young carers to be isolated from support services, a Barnardo's report reveals;^[xi]
• New research from the children's charity reports that young carers from minority ethnic backgrounds are missing out on their childhoods because of the additional responsibilities and stresses they have to deal with.
• Barnardo's research, based on interviews with BAME young carers and practitioners found:
  • Many young South Asian carers were far too often being relied upon as interpreters, relaying technical and deeply personal medical information between patients and doctors, which can lead to misdiagnosis and increased anxiety within families.
  • The concept of a young carer is unfamiliar to many, as helping your family and extended family is often expected.
  • Often families do not want agencies involved as there is a deep mistrust of social services, or authorities and they are fearful of their families being split up.
  • There is stigma within many communities in acknowledging mental health, disability issues and seeking support.
• According to a report by SCIE^[xii], carers from a minority ethnic background are less likely to access support services and can become socially isolated. Possible reasons include concerns from carers about language and cultural appropriateness but also assumptions made about carers and cultural aspects of caring from those commissioning and providing services.
• The Census 2011 data indicates that a smaller proportion of the BAME population provides more care than the white British population.  However, the BAME population is much younger and therefore less likely to have older parents or other relatives needing care.
• Analysis by University of Leeds has, in the past, suggested that, when age is accounted for, BAME families are more likely to provide care for older or disabled loved ones. The NHS Information Centre's Survey of Carers in Households found that BAME carers are more likely than white carers to provide support for at least 20 hours a week (56% compared to 47%).^[xiii]

Sandwich Carers

• A report from the Office for National Statistics (ONS) says more than a quarter of such "sandwich carers" are suffering from depression or stress. "Sandwich carers" look after their elderly parents and their children.
• There are 1.3 million people in the UK with such multi-generational caring responsibilities, say researchers, with many feelings ignored and undervalued. The ONS says the numbers in this "sandwich" generation, often in their 40s and 50s, are being increased by a combination of longer life expectancy and women tending to have children later in life.^[xiv]
• But the report warns of the hidden pressures being carried by these mid-life carers - with warnings that they can be worn down emotionally, physically and financially.
• The majority of carers in this "sandwich generation" are women - and almost half of these women feel that they cannot work as many hours as they would like.
• For those with more than 20 hours per week of caring, the ONS says a third are experiencing some kind of mental health problems, which might be stretched out over many years.
• They risk becoming isolated, running out of money and being constantly under pressure - while trying to juggle between responsibilities of care, work and their own relationships.