Chapter 70 Role of carers

Doctors need to be aware of informal carers for two reasons: firstly, because caring for an elderly, chronically sick or disabled relative may affect the health of the carer and, secondly, because community care (see pp. 156–157) relies on families to take on the role of carer.

Caring has been divided into responsibility for the person (as may be the case, for example, when caring for an adult with schizophrenia) or carrying out direct care tasks (as when caring for an elderly parent no longer able to care for him- or herself).

Role of carers

Different models of care give carers different roles. Twigg & Atkin (1991) have suggested four models: (1) carers as a resource; (2) carers as co-workers; (3) carers as co-clients; and (4) when carers are superseded.

Carers as a resource

This is probably the most common view: that it is the natural order for a family to be responsible for the care of its members. The focus of services is on the dependent person and the aim is to maximize the level of informal care. This remains the background against which current British community care policies are set, although increasingly the next model is adopted alongside it.

Carers as co-workers

This model also aims to maintain and increase informal care, but acknowledges that to do so the needs of carers must be recognized – both psychological and physical needs such as domestic help, aids and time away, including holidays. This can be provided through a variety of services, including one-to-one support from health care staff such as nurses or through support offered through services run by charities or voluntary organizations.

Carers as co-clients

Here the carer becomes an indirect client and is thus a legitimate focus for support and services. This may cause confusion in the health service, where the formal status of a patient is clear, but may prove less of a problem for work, where the definition of ‘client’ is more accommodating. Thus carers may find it easier to get help and support in the social services than through the NHS unless such services can be seen to have a direct clinical outcome. Family therapy treats all members as ‘patients’ or ‘clients’.

Superseded carers

The last model looks to the future of the dependent person, aiming to make him or her independent and thus not (or less) reliant on the support of the carer. This model may be most appropriate for those dependent on parents. Not only is it better for disabled persons to have greater independence for themselves, but it helps answer the question of who will look after them when their parents are themselves unable to cope.

Impact of caring on the family

The impact on the family has traditionally been referred to as ‘burden‘, although some, particularly those ‘cared for‘, may see it as insulting and stigmatizing to be described as such. Burden is usually described as either objective (that which can be objectively measured and externally validated) or subjective (that which is perceived by the carer). It should be noted that objective burden and subjective burden are not necessarily correlated (Platt, 1985).

Objective burden

Objective burden comprises the things that are externally observable and objectively quantifiable. Financial problems include loss of earnings if the carer has to give up his or her job, as well as additional costs ranging from extra laundry or heating to special aids and trips to hospital. The loss of employment not only affects finances, but also deprives the carer of outside contact and a role other than that of carer.

The disruption of household can be severe, particularly in terms of loss of freedom and privacy, which includes the difficulty couples may have in spending time alone together. Children may be affected through restrictions on their lives, particularly if they become carers for parents.

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