Changes

November 2025 — reviewed. A literature search was conducted in October 2025 to identify evidence-based guidelines, UK policy, systematic reviews, and key randomized controlled trials published since the last revision of this topic. No major changes to recommendations have been made, but the topic has been restructured for clarity.

Update

Goals

To support primary healthcare professionals to:

• Identify adult carers.
• Ensure carers receive an appropriate assessment of their needs.
• Understand the challenges adult carers may experience.
• Advise carers on accessing information and support.
• Support carers in their caring role, including end-of-life care.
• Promote carers' health and wellbeing.

Outcome measures

No outcome measures were found during the review of this topic.

Audit criteria

No audit criteria were found during the review of this topic.

QOF indicators

No QOF indicators were found during the review of this topic.

QIPP — Options for local implementation

No QIPP indicators were found during the review of this topic.

NICE quality standards

Supporting Adult Carers

• Carers are identified by health and social care organisations and encouraged to recognise their role and rights.
• Carers are supported to actively participate in decision making and care planning for the person they care for.
• Carers having a carer's assessment are given the opportunity to discuss what matters most to them, including their own health, wellbeing and social care needs, and work, education, or training.
• Carers are regularly given the opportunity to discuss with health and social care practitioners the value of having a break from caring and the options available to them.
• Carers are offered supportive working arrangements by workplaces.

[NICE, 2021]

What is a carer?

How common is it?

• There are an estimated 5.8 million unpaid carers in the UK, with around 1.7 million providing 50 or more hours of care per week [Carers UK, 2025a].
  • According to the 2021 Census report for England and Wales [ONS, 2023a; ONS, 2023b]: 
    • The proportion of people providing 19 or fewer hours of unpaid care per week decreased from 7.2% in 2011 to 4.4% in 2021. The proportion providing 20–49 hours increased from 1.5% to 1.9%, and those providing 50 or more hours rose slightly from 2.7% to 2.8%.
    • Women are more likely to provide care than men. 
    • Women aged 55–59 years provide the most unpaid care; in both nations, around 1 in 5 women in this age group are unpaid carers.
    • Older age groups provide the highest hours of unpaid care per week, with women aged 75–79 years and men aged 85–89 years providing the most care.
  • It is estimated that by 2035, if carer numbers grow only in line with population growth, there will be 400,000 more people providing 10 or more hours of care per week, including 130,000 of working age. If carers providing fewer than 10 hours a week are also included, the total increase would be 990,000 [JRF, 2024].

What challenges do carers experience?

• Despite the huge contribution carers make to society, caring often comes at a significant personal cost, especially when adequate support is lacking [Carers UK, 2025b].
  • Caring can be rewarding, providing personal fulfilment, strengthening family ties, and saving family resources [Adelman, 2014; Onwumere, 2016; DHSC, 2018; Swartz, 2019].
  • However, many carers are not well prepared for their caring role [Corry, 2019], and stressors associated with caring are often persistent, uncontrollable, and unpredictable [Swartz, 2019].
• The challenges of caring can include:
  • Impact on work and employment
    • Many carers juggle work with caring responsibilities, which can make it difficult to maintain their own health and wellbeing.
    • Caring can adversely affect employment through tiredness, stress, and reduced opportunities for promotion [DHSC, 2018].
    • Research by Carers UK found that 2.6 million people have left work to care, often due to a lack of replacement care or employer support [Carers UK, 2019].
    • Carers are often adversely affected by reduced pensions, because they have reduced their working hours or are forced to leave work to provide care. 
  • Financial difficulties
    • In the UK, 1.2 million unpaid carers live in poverty, with 400,000 living in deep poverty [Carers UK, 2025a].
    • Being out of work is the main predictor of poverty. Additionally, caring often involves additional costs, such as equipment, specialist food, and higher household bills.
    • With the rising cost of living and insufficient support from the social security system, many carers find it increasingly difficult to cover the extra costs of care.
    • In a Carers UK survey, nearly half (49%) of carers said they had cut back on essentials, such as food, heating, clothing, and transport costs, while a third of carers (32%) had taken out bank loans, used credit cards, or used a bank account overdraft.
  • Impact on health and wellbeing
    • Without adequate support from health and social care services, caring can cause significant stress, loneliness, depression, exhaustion, and feelings of being overwhelmed.
    • Caring has been established as a social determinant of health, and carers are more likely than non-carers to have poor health. The 2021 Census report for England and Wales found that about 1 in 4 carers reported ‘not good health’ after adjusting for age, compared with fewer than 1 in 5 non-carers [ONS, 2024].
  • • In a Carers UK survey, 42% of carers said their physical health had suffered as a result of caring, and 30% said their physical health was bad or very bad. Many carers reported poor mental health: 74% felt stressed or anxious, 40% felt depressed, and 35% said their mental health was bad or very bad.
    • Caring can affect relationships and the ability to participate in activities. Carers are seven times more likely to experience loneliness than the general public [Carers UK]. 
• Caring can also have a lasting impact on people’s lives [Carers UK, 2025b]:
  • Many former carers find that their finances, health, and ability to work in paid employment are still impacted, even after their caring responsibilities have ended.
  • Health issues may worsen if carers are too busy to seek help or treatment when caring.
  • The end of a caring role can bring a loss of identity or purpose, as well as grief for the person being cared for.
  • Former carers may find it difficult to return to paid employment after years of full-time caring and often struggle financially if they are no longer eligible for financial benefits.

[DHSC, 2018; Carers UK, 2019; Carers UK, 2025a; Carers UK, 2025b; Carers UK, 2025c]

Why is it important to identify and support carers?

How can I identify carers?

• Take proactive steps to identify carers (in line with the Care Act 2014).
  • Use opportunities such as GP appointments, flu vaccination appointments, and home visits to identify carers.
  • Ensure policies and systems support the identification of carers.
  • Be aware of barriers to early identification, including a preference to identify primarily as a family member or friend rather than as a carer.
  • Ask people with care and support needs who help them; support may come from multiple people and does not have to be a family member or someone who lives with them.
  • Other possible ways to identify carers in general practice (involving the whole practice team) include self-identification, at registration, opportunistic identification, at diagnosis, and on hospital admission or discharge.
• When a carer is identified:
  • Record the carer’s details in the care recipient's records (if the person is registered with the practice and both the person and the carer give their consent).
  • Record the carer’s status in their own records (if they are registered with the practice and give their consent).

Management

From age 18 years onwards.

Search strategy

Scope of search

A literature search was conducted for guidelines, systematic reviews and randomized controlled trials on primary care management of support for adult carers.

Search dates

September 2020 - October 2025

Key search terms

Various combinations of searches were carried out. The terms listed below are the core search terms that were used for Medline.

• exp Caregivers/
• carer or carers or caregiver$* or (care adj/next giver*)

Sources of guidelines

• National Institute for Health and Care Excellence (NICE)
• Scottish Intercollegiate Guidelines Network (SIGN)
• Royal College of Physicians
• Royal College of General Practitioners
• Royal College of Nursing
• NICE Evidence
• Health Protection Agency
• World Health Organization
• National Guidelines Clearinghouse
• Guidelines International Network
• TRIP database
• GAIN
• NHS Scotland National Patient Pathways
• New Zealand Guidelines Group
• Agency for Healthcare Research and Quality
• National Health and Medical Research Council (Australia)
• Royal Australian College of General Practitioners
• British Columbia Medical Association
• Canadian Medical Association
• Alberta Medical Association
• University of Michigan Medical School
• Michigan Quality Improvement Consortium
• Singapore Ministry of Health
• National Resource for Infection Control
• Patient UK Guideline links
• UK Ambulance Service Clinical Practice Guidelines
• RefHELP NHS Lothian Referral Guidelines
• Medline (with guideline filter)
• Driver and Vehicle Licensing Agency
• NHS Health at Work(occupational health practice)

Sources of systematic reviews and meta-analyses

• The Cochrane Library:
  • Systematic reviews
  • Protocols
  • Database of Abstracts of Reviews of Effects
• Medline (with systematic review filter)
• EMBASE (with systematic review filter)

Sources of health technology assessments and economic appraisals

• NIHR Health Technology Assessment programme
• The Cochrane Library:
  • NHS Economic Evaluations
  • Health Technology Assessments
• Canadian Agency for Drugs and Technologies in Health
• International Network of Agencies for Health Technology Assessment

Sources of randomized controlled trials

• The Cochrane Library:
  • Central Register of Controlled Trials
• Medline (with randomized controlled trial filter)
• EMBASE (with randomized controlled trial filter)

Sources of evidence based reviews and evidence summaries

• Drug & amp; Therapeutics Bulletin
• TRIP database
• Central Services Agency COMPASS Therapeutic Notes

Sources of national policy

• Department of Health
• Health Management Information Consortium(HMIC)

Patient experiences

• Healthtalkonline
• BMJ - Patient Journeys
• Patient.co.uk - Patient Support Groups

Sources of medicines information

The following sources are used by CKS pharmacists and are not necessarily searched by CKS information specialists for all topics. Some of these resources are not freely available and require subscriptions to access content.

• British National Formulary(BNF)
• electronic Medicines Compendium(eMC)
• European Medicines Agency(EMEA)
• LactMed
• Medicines and Healthcare products Regulatory Agency(MHRA)
• REPROTOX
• Scottish Medicines Consortium
• Stockley's Drug Interactions
• TERIS
• TOXBASE
• Micromedex
• UK Medicines Information

Stakeholder engagement

Our policy

The external review process is an essential part of CKS topic development. Consultation with a wide range of stakeholders provides quality assurance of the topic in terms of:

• Clinical accuracy.
• Consistency with other providers of clinical knowledge for primary care.
• Accuracy of implementation of national guidance (in particular NICE guidelines).
• Usability.

Principles of the consultation process

• The process is inclusive and any individual may participate.
• To participate, an individual must declare whether they have any competing interests or not. If they do not declare whether or not they have competing interests, their comments will not be considered.
• Comments received after the deadline will be considered, but they may not be acted upon before the clinical topic is issued onto the website.
• Comments are accepted in any format that is convenient to the reviewer, although an electronic format is encouraged.
• External reviewers are not paid for commenting on the draft topics.
• Discussion with an individual or an organization about the CKS response to their comments is only undertaken in exceptional circumstances (at the discretion of the Clinical Editor or Editorial Steering Group).
• All reviewers are thanked and offered a letter acknowledging their contribution for the purposes of appraisal/revalidation.
• All reviewers are invited to be acknowledged on the website. All reviewers are given the opportunity to feedback about the external review process, enabling improvements to be made where appropriate.

Stakeholders

• Key stakeholders identified by the CKS team are invited to comment on draft CKS topics. Individuals and organizations can also register an interest to feedback on a specific topic, or topics in a particular clinical area, through the Getting involved section of the Clarity Informatics website.
• Stakeholders identified from the following groups are invited to review draft topics:
  • Experts in the topic area.
  • Professional organizations and societies (for example, Royal Colleges).
  • Patient organizations, Clarity has established close links with groups such as Age UK and the Alzheimer’s Society specifically for their input into new topic development, review of current topic content and advice on relevant areas of expert knowledge.
  • Guideline development groups where the topic is an implementation of a guideline.
  • The British National Formulary team.
  • The editorial team that develop MeReC Publications.
• Reviewers are provided with clear instructions about what to review, what comments are particularly helpful, how to submit comments, and declaring interests.

Patient engagement

Clarity Informatics has enlisted the support and involvement of patients and lay persons at all stages in the process of creating the content which include:

• Topic selection
• Scoping of topic
• Selection of clinical scenarios
• First draft internal review
• Second draft internal review
• External review
• Final draft and pre-publication

Our lay and patient involvement includes membership on the editorial steering group, contacting expert patient groups, organizations and individuals.

Evidence exclusion criteria

Our policy

Scoping a literature search, and reviewing the evidence for CKS is a methodical and systematic process that is carried out by the lead clinical author for each topic. Relevant evidence is gathered in order that the clinical author can make fully informed decisions and recommendations. It is important to note that some evidence may be excluded for a variety of reasons. These reasons may be applied across all CKS topics or may be specific to a given topic.

Studies identified during literature searches are reviewed to identify the most appropriate information to author a CKS topic, ensuring any recommendations are based on the best evidence. We use the principles of the GRADE and PICOT approaches to assess the quality of published research. We use the principles of AGREE II to assess the quality of published guidelines.

Standard exclusions for scoping literature:

• Animal studies
• Original research is not written in English

Possible exclusions for reviewed literature:

• Sample size too small or study underpowered
• Bias evident or promotional literature
• Population not relevant
• Intervention/treatment not relevant
• Outcomes not relevant
• Outcomes have no clear evidence of clinical effectiveness
• Setting not relevant
• Not relevant to UK
• Incorrect study type
• Review article
• Duplicate reference

Organizational, behavioural and financial barriers

Our policy

The CKS literature searches take into consideration the following concepts, which are discussed at the initial scoping of the topic.

• Feasibility
  • Studies are selected depending on whether the intervention under investigation is available in the NHS and can be practically and safely undertaken in primary care.
• Organizational and Financial Impact Analysis
• Studies are selected and evaluated on whether the intervention under investigations may have an impact on local clinical service provision or national impact on cost for the NHS. The principles of clinical budget impact analysis are adhered to, evaluated and recorded by the author. The following factors are considered when making this assessment and analysis.
  • Eligible population
  • Current interventions
  • Likely uptake of new intervention or recommendation
  • Cost of the current or new intervention mix
  • Impact on other costs
  • Condition-related costs
  • In-direct costs and service impacts
  • Time dependencies
• Cost-effectiveness or cost-benefit analysis studies are identified where available. 

We also evaluate and include evidence from NICE accredited sources which provide economic evaluations of recommendations, such as NICE guidelines. When a recommended action may not be possible because of resource constraints, this is explicitly indicated to healthcare professionals by the wording of the CKS recommendation.

Declarations of interest

Our policy

Clarity Informatics requests that all those involved in the writing and reviewing of topics, and those involved in the external review process to declare any competing interests. Signed copies are securely held by Clarity Informatics and are available on request with the permission of the individual. A copy of the declaration of interest form which participants are asked to complete annually is also available on request. A brief outline of the declarations of interest policy is described here and full details of the policy is available on the Clarity Informatics website. Declarations of interests of the authors are not routinely published, however competing interests of all those involved in the topic update or development are listed below. Competing interests include:

• Personal financial interests
• Personal family interest
• Personal non-financial interest
• Non-personal financial gain or benefit

Although particular attention is given to interests that could result in financial gains or losses for the individual, competing interests may also arise from academic competition or for political, personal, religious, and reputational reasons. An individual is not obliged to seek out knowledge of work done for, or on behalf of, the healthcare industry within the departments for which they are responsible if they would not normally expect to be informed.

Who should declare competing interests?

Any individual (or organization) involved in developing, reviewing, or commenting on clinical content, particularly the recommendations should declare competing interests. This includes the authoring team members, expert advisers, external reviewers of draft topics, individuals providing feedback on published topics, and Editorial Steering Group members. Declarations of interest are completed annually for authoring team and editorial steering group members, and are completed at the start of the topic update and development process for external stakeholders.

Competing interests declared for this topic:

None.