Carers and caring relationships
Carers span all ages and care for parents, siblings, spouses, partners, friends and neighbours. Whilst caring is predominantly undertaken by women, the number of men caring is increasing especially amongst older spouses.
This page and accompanying film are part of a resource that presents findings from a scoping review of knowledge and research evidence relating to carers and carers lives and issues. These findings should inform future research, policy development and improve practice in delivering carer support.
The review showed that carers provide support in many different situations. The support needs of the cared for person needs vary greatly by type, number and complexity of health conditions, and in intensity and duration.
Cared for groups of people include:
- older people and those with needs related to ageing
- People with dementia
- People with functional mental ill health
- People with learning disabilities
- Those at the end of life
- People who have cancer, or have had a stroke and/or another long-term condition
- HIV/Aids.
Some cared for people have more than one type of health condition e.g. an older person may have a physical disability and dementia. The changing demographic profile of the UK population and reduced use of institutional care means that there are growing numbers of people with comorbid complex health conditions being supported by a carer in the community over many years. Many of these carers are older people caring for a spouse or a disabled adult children (with intellectual disabilities in particular).
All care takes place within a relationship - typically a dyadic one - and each relationship is unique. Relationships can be between:
- parent and child
- spouses or partners
- siblings
- friends or other non-kin
The interests and preferences of carers and those they care for are not always shared and at times conflicts may arise. They can arise around questions of identity and autonomy (for example in relation to mental health and learning disabilities), or in terms of protection and independence (for example in relation to frail or vulnerable older people). It is important to recognise and manage these tensions in providing effective support to carers..
Other important issues that were highlighted in the review in relation to caring relationships are:
Carer identity
Many people can find a carer identity difficult to assume or to distinguish from their role as a parent, partner, son/daughter or other relative. Carers who are reluctant to identify themselves as carers are often referred to as ‘hidden carers’. Groups of hidden carers include older carers; young carers; rural carers; carers from black and minority ethnic groups (BAME), and carers in other groups that may be ‘below the radar’, including those in lesbian, gay, bisexual and transgender (LGBT) relationships. Whilst it is crucial for staff working in health, education, care and support services to be aware of caring as a role and activity and to offer support to carers, it is also important for staff to be sensitive towards carers’ reluctance to identify as a ‘carer’. Carers have a right to services and support whether they label themselves a carer or not.
Older carers
Demographic changes means that there are growing numbers of older carers. Older carers have a distinctive profile. they are typically spouses or partners of an older person with multiple health related needs such as dementia. Older carers also often have to face particularly stressful challenges including managing demanding care tasks and roles when ill or frail themselves. Caring in late life relationships are usually longstanding and characterised by mutuality and interdependence. For these reasons older carers tend not to identify as a carer and may be reluctant to acknowledge that they are struggling to cope or seek help.
Not all older carers are providing support to a spouse or partner. With longer life expectancy, some older carers are elderly parents of a middle aged (or older) disabled son or daughter (usually with a learning disability). Older parent carers are distinctive in that they have been carers for a very long time; many have concerns about their own health status and about the future care of their son or daughter after they pass away or become incapacitated.
The role of community
The community in which caring takes place is another influence on carers’ experiences. Whilst carers may share common features there is also considerable diversity in caring. In BAME communities for example, cultural and social expectations may be different. In terms of accessing support there are often issues around language; limited development of culturally appropriate services and support; and barriers are also created by racism and prejudice. BAME carers may have poorer health too due to lifecourse disadvantage and be exposed to poverty and social exclusion. Services need to be sensitive to the heterogeneous needs of these groups of carers and aware of how cultural expectations impact on use of services.
Links and related resources
-
Commissioners and managers Open
- When I'm gone: securing long-term care and support for disabled adults
- Understanding carers: a guide for local authorities
- Dementia and minority ethnic carers
- A Carer’s Life: Implications and considerations for commissioning
- The triangle of care: carers included: a guide to best practice for dementia
- Building carer friendly communities
- Dementia: through the eyes of women
- Who will care after I'm gone? An insight into the pressures facing parents of people with learning disabilities
- Caring about older carers: providing support for people caring later in life
- Commissioning for carers: principles and resources to support effective commissioning for adult and young carers
- Improving Health Outcomes for Older and Young Adult Carers
- The triangle of care: carers included: a guide to best practice in mental health care in England
- The sandwich generation: older women balancing work and care
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Frontline professionals and support organisations Open
- Missing out: the identification challenge
- Carer passport: identifying carers and improving support
- Whole family pathway: a resource for practitioners
- Identification of carers in GP practices: a good practice document
- The triangle of care: carers included: a guide to best practice for dementia
- Improving Health Outcomes for Older and Young Adult Carers
- The triangle of care: carers included: a guide to best practice in mental health care in England
- The Children's Society. Engage Toolkit: BAME family carers
- The Children's Society. Include: Supporting young carers and their families.
- Carers and communities: a guide to understand why carers need communities and communities need carers
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Carers and people who use services Open
Explore SCIE’s wider index of content on carers.
Search carers resources from Social Care Online, the UK’s largest database of care knowledge and research..
Find out more about this knowledge review
Downloads
- Seeing the wood for the trees. Carer-related research and knowledge (NIHR SSCR scoping review)
- Utilising carer related research and knowledge: a scoping review and information resource. Research findings (NIHR SSCR summary version)
- Seeing the wood for the trees. Carer-related research and knowledge: a scoping review (Full report)