APPENDIX 3 - CARERS


Carer

A carer is defined as a person who provides any informal assistance, in terms of help or supervision, to people with disability or older people (aged 65 years and over). Assistance must be ongoing, or likely to be ongoing, for at least six months.

Where the carer lives in the same household as the recipient of care, the assistance is for one or more of the following activities:

Core activities:

• Mobility
• Self-care
• Communication.

Non-core activities:

• Health care
• Cognitive or emotional tasks
• Household chores
• Property maintenance
• Meal preparation
• Reading or writing
• Transport.

Carers do not have to be living in the same household as the recipient of care. Assistance to a person living in a different household to the carer relates to 'everyday activities', without specific information on the type of activity.

People who provide formal assistance (on a regular paid basis, usually associated with an organisation) are not considered to be carers in the scope of this survey. Informal assistance is unpaid with the following exceptions:

• nominal amounts of money, or payments for expenses incurred, may be made by the recipient to the carer.
• any assistance received from family or friends who are living in the same household is considered to be informal care, regardless of whether or not the carer is paid.
• if the carer is receiving a carer payment or other allowances, they are still regarded as providing informal care.

For young children, any assistance received should be as a result of a long-term health condition or disability, and not due to their age.

In cases where there may be multiple persons providing informal assistance to a single recipient of care, the Survey of Disability Ageing and Carers (SDAC) distinguishes between primary, other and unconfirmed primary carers. A person may be both a primary carer and an other carer. More information on types of carers is shown below.

People who provide assistance to usual residents with a long term health condition only (i.e. who do not have a disability and are under 65 years of age) are not included in the scope of the survey.

Methods of carer identification

In the SDAC, carers are identified through a series of screening questions. A carer can be identified by any responsible adult who answers broad questions about household members in the initial disability identification section of the survey, by the recipient of care in their personal interview, or by the carer themselves.

Primary carer

A primary carer is a person who provides the most informal assistance, in terms of help or supervision, to a person with one or more disabilities, with one or more of the core activities of mobility, self-care or communication. In this survey, primary carers only include persons aged 15 years and over. People aged 15 to 17 years were only interviewed personally if parental permission was granted. Primary carers and their recipients may live in different households, however, the 2015 SDAC only collects information about primary carers if they live in the households which are included in the SDAC randomly selected sample.

The SDAC collects information from both carers and the recipients of their care living in the same households. Often interviews occur at different times and occasionally inconsistent responses are provided by household members. In the 2015 SDAC, some carers nominated themselves as a primary carer. The recipient subsequently indicated that they did not require a primary carer as they did not have a core activity limitation. This inconsistency means that in a small number of cases, some primary carers will be reported as providing support to a person with non-core limitations only.

Other carer

An 'Other carer' is a carer who is aged under 15 years; or who provides informal assistance with one or more of the core activity tasks but has not been identified as the person that provides the most informal assistance. An 'Other carer' also includes carers who only provide assistance with one or more non-core activities. This includes unconfirmed primary carers.

Unconfirmed primary carer

An unconfirmed primary carer is a person identified as a carer by any responsible adult or the recipient of care; however, their primary carer status could not be confirmed as they were unavailable for their personal interview.

Fall-back carer

A fall-back carer is a person identified by the primary carer as being able to take responsibility for the care of the main/only recipient should the primary carer become unavailable. A fall-back carer cannot be a formal provider.

Principal carer

This term was not used in the 2009, 2012 or 2015 SDAC, as there was a change in the way primary carers were identified compared with previous surveys. In previous surveys, a principal carer was a person only identified by the recipient of care, as being the person who provided them with the most care, and not by the initially responding responsible adult. These carers were not asked to confirm their carer status. From 2009 onwards, such people were subsequently personally interviewed to confirm whether they were a primary carer or not.

Parameters of carers

The following table highlights the differences in characteristics between primary and other carers.

Characteristics	Carers
	Primary carers		Other carers*
Age of carer	15 years and over		All ages
Level of support	Provides the most informal assistance of all informal carers		Not identified as providing the most support
Support provided	Generally must provide support with at least one core activity (mobility, self-care or communication). May also provide support with non-core activities		May provide support with core and non-core activities
Recipient	Any person with disability		Any person with disability or person aged 65 years and over without disability

* Includes Unconfirmed primary carers