The 2011 Census indicated that there were around 6.5 million unpaid carers in the UK, with 1.3 million being over 65. Most carers were aged between 50 and 64 but people aged 65 and over made up a higher proportion of carers (19%) than in the population as a whole.

Carers UK (2015) estimated that the number of carers will increase to 9 million by 2037. This rise is linked with a number of factors, not least the increasing number of people aged over 85 (the group most likely to need care and support), which is expected to increase to 1.9 million by 2020 (Office for National Statistics). Other pressures include the continued closure of care and nursing homes and the increased use of care at home (The state of health care and adult social care in England 2018/19, Care Quality Commission). In addition, according to a survey conducted by Dying Matters, 70% of people expressed a wish to stay in their own home, and to die at home rather than in hospital or a nursing home. This is likely to further increase reliance on family members and friends.

Despite the recognised pressures, both Carers UK's State of caring report 2019 and the Government response to the 2016 carers call for evidence (in advance of the Carers action plan 2018 to 2020) report clear evidence that many carers did not feel adequately supported and that although caring can be immensely rewarding, many found that they did not feel respected, valued and supported for the contribution they made. Guidelines on supporting carers are therefore urgently needed.

The need for the guideline

Caring for someone can take its toll on a person's health and wellbeing. According to Carers UK (Juggling work and unpaid care), almost 1 in 10 UK adults have given up work or reduced their hours to accommodate care. Leaving or reducing work affects carers' own independence and wellbeing and their contribution to the economy. This may also have a substantial effect on their former employers' productivity and lead to high costs in recruitment and training.

Carers may also give up other activities and may face isolation; they may report feelings of depression and a reduced quality of life. Good quality, consistent support helps to address this, providing benefits for the health, wellbeing and resilience of unpaid carers. It can also enhance the life of the person being supported and help to reduce admissions to hospital and support earlier discharge. However, the amount and quality of support available to unpaid carers varies widely across the UK. Even where it is available, it may be neither appropriate nor affordable and complex local systems can be difficult to navigate with little guidance and direction (Government response to the 2016 carers call for evidence).

A key barrier to the provision of appropriate support to carers is that they are often not identified. Many carers do not think of themselves as carers or are not identified by health and social care practitioners as such (so called 'hidden carers') and do not know about the support available. The Care Act 2014 and Department of Health and Social Care's Care and support statutory guidance attempted to address this, substantially strengthening the rights and recognition of adult carers within the social care system. The Act entitles carers to assessment in their own right, together with information and advice to help them make the best choices about support for their own health and wellbeing. The Care Act defines a carer as an adult, aged 18 or over, who provides, or intends to provide, care for another adult who needs care because of a disability, health condition, frailty, mental health problem, addiction or other health or care needs. It excludes those who provide paid care or do so as voluntary work.

The Care Act introduces carer support plans setting out how identified and eligible needs may be met, including personal budgets and the option of direct payments. These duties reflect the emphasis on universal personalised support for carers as set out in the NHS long term plan (NHS England). However, it is still the case that only a small proportion (in one area estimated as 7%) are identified as unpaid carers by social care and health organisations, so many are missing out on help and support.

The purpose of this guideline

This guideline provides action-orientated recommendations for good practice, aimed at improving outcomes for adult carers. The guideline is based on the best available evidence of effectiveness, including cost effectiveness, as well as evidence on the views and experiences of carers, people using services and practitioners. It identifies good practice in providing support that enhances the wellbeing, resilience and life experience of adult carers.

The guideline covers information and support for carers; identifying carers and assessing their needs; helping carers stay in, enter or return to employment and training; providing community support, training, psychological and emotional support for carers; and providing support during changes to the caring role and during the end of life period of the cared-for person.

How it relates to legislation and other NICE guidelines

The guideline complements statutory duties and good practice as set out in relevant legislation and guidance. The recommendations cross-refer to legislation and other guidance where appropriate. In particular, the guideline takes account of the relationship between the Children and Families Act 2014 and the Care Act 2014, recognising that many young carers will transition into adult caring roles and that many parent carers will similarly transition into caring roles for their adult children. It also takes account of NHS England's Carers toolkit, the latest National carers strategy and the Carers action plan 2018 to 2020, and the Care and support statutory guidance.

Most carers will need support from a number of different services, including the NHS. The NHS long term plan emphasises the vital contribution of carers and the need for more integrated and personalised support (including greater use of personal health budgets). The Care Act 2014 expects the NHS and social care to work together and where possible to integrate services and support. The Care Quality Commission has introduced Quality Markers in Primary Care (usually the first means of identifying carers) and the Association of Directors of Adult Social Services (ADASS) Carers Policy Network reports encouraging evidence of greater cooperation between health and social care in their regularly updated Guide to efficient and effective interventions for implementing the Care Act. Similarly, principles of co-production and interventions such as Think Local Act Personal (TLAP)'s 'Make it real' offer new approaches to more actively engaging carers as 'experts by experience' and co-designing their own care and support.

NICE guidelines provide recommendations on what works. This may include details on who should carry out interventions and where. NICE guidelines do not routinely describe how services are funded or commissioned, unless this has been formally requested by the Department of Health and Social Care.

  • National Institute for Health and Care Excellence (NICE)