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4102.0 - Australian Social Trends, 2001  
Previous ISSUE Released at 11:30 AM (CANBERRA TIME) 06/06/2001   
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Contents >> Family >> Family Services: Caring in the community

Services and Assistance: Caring in the community

In 1998, three-quarters of carers lived in the same household as the person for whom they provided care.

With the trend away from institutionalised care (and the consequent increased emphasis on community care), informal carers such as family members, friends and neighbours are becoming an increasingly important source of assistance to people with a disability. While caring for family and friends can be a satisfying experience, it can also affect carers financially, physically and emotionally, and may impact on their capacity to pursue education, employment, social and leisure opportunities.

In 1998, there were 2.3 million carers in Australia, representing approximately 13% of the population. Most informal care is given to family members living in the same household. In 1998, three quarters of carers provided care to someone living in the same household.


Carers and care recipients
The data presented in this article are from the ABS Survey of Disability, Ageing and Carers conducted between March and May 1998. More details can be found in Caring in the Community, Australia, 1998 (cat. no. 4436.0).

A carer is a person of any age who provides help or supervision with everyday activities to any person with a disability or long-term health condition, or to any person aged 60 years and over. The help or supervision has to be ongoing, or likely to be ongoing, for at least six months.

A primary carer is a person of any age who provides the most help or supervision to a person with one or more disabilities. The assistance has to be ongoing, or likely to be ongoing, for at least six months and to be provided for self care, mobility or communication. A small proportion of primary carers (less than 1% in 1998) are younger than 15 years of age. For purposes of simplicity and consistency, this article focuses on primary carers aged 15 years and over.

Primary carers usually care for someone who has a profound or severe level of core activity restriction. For people with a disability, the severity of their disability can be assessed by the degree to which they are restricted in performing the three core activities of self care, mobility and communication. In order of decreasing severity, the four levels of core activity restriction are profound, severe, moderate and mild.

People with a profound core activity restriction are unable to do, or always need help or supervision with self care, mobility or communication.

People with a severe core activity restriction sometimes need help with self care, mobility or communication, have difficulty understanding or being understood by family or friends, or can communicate more easily using sign language or other non-spoken forms of communication.


Age and sex
Caring for a child, partner or parent who has an activity restriction is predominantly a family role that many people may perform during the course of their lifetime, with the focus of care changing as people grow older. Overall, women were more likely than men to be a carer in 1998 (14% compared with 11%). However, the likelihood of being a carer differed widely between men and women for some stages of life. While boys and girls (4%) were just as likely to be carers, as were 18-24 year old men and women (around 10%), men's and women's likelihood of being a carer was quite different after their mid 20s.

For men, the likelihood of being a carer decreased to 8% of those aged 25-34 years, but then increased with age to peak at 24% of men aged 75 years and over. Among women, the likelihood of being a carer continued to rise with age until 55-64 years (26%) and then diminished with increasing age. Older carers tend to be caring for their partner. Women generally live longer than men and tend to be younger than their male partners, so beyond 64 years are increasingly more likely than men of the same age to be widowed, and as a result, are less likely to have a partner to care for.

In 1998, carers aged 65 years and over (83%) and carers aged under 35 years (79%) were more likely to be caring for someone they lived with than were carers aged between 35 and 64 years (70%). A comparatively high proportion of carers in this middle age group (35%) were caring for at least one person who was living elsewhere. This age range represents the phase of life during which people are most likely to be caring for their parents.

PROPORTION OF PEOPLE WHO WERE CARERS, 1998

Source: Caring in the Community, Australia, 1998 (cat. no. 4436.0).


Primary carers
In 1998, one fifth of all carers were primary carers who cared mainly for people who had a profound or severe core activity restriction. Of the 447,900 primary carers who were aged 15 years and over, 352,200 (79%) were living with the main recipient of their care. Most (62%) of these co-resident primary carers were caring for someone whose main impairment was physical. Less common were those caring for someone whose main impairment was intellectual (12%), sight or hearing loss (10%), psychological (7%), and speech difficulty (4%).

The majority of co-resident primary carers (58%) were caring for a person who had a profound core activity restriction (that is, they always need help with self care, mobility or communication). A smaller proportion (35%) were caring for someone with a severe core activity restriction (that is, they sometimes need help) and the remainder were caring for someone who had a schooling or employment restriction, or who did not have a specific restriction.

Relationship between primary carers and main care recipients
In 1998, 43% of primary carers were caring mainly for their partner, 24% for one of their parents, and 22% for one of their children. At different ages, primary carers were more likely to be caring for a particular member of their family. Those aged 15-34 years were most likely to be a parent who was the main caregiver for a child (35%), while those aged 35-64 years were most likely to be caring for their partner (36%). Similarly, three quarters of primary carers aged 65 years and over were caring for their partner.

The likelihood of living in the same household varies according to the relationship of the carer to their main care recipient. More than 99% of those caring for their partner, and 96% of those caring for a child, were living with that family member. In contrast, less than half (45%) of those who were caring for a parent, or for someone other than their parent, partner or child (39%), were living with that person.

RELATIONSHIP OF PRIMARY CARER(a) TO MAIN RECIPIENT OF CARE, 1998

(a) Limited to those living in a household.
(b) Comprises primary carers caring for a friend, or for a family member other than a partner, parent or child.

Source: Caring in the Community, Australia, 1998 (cat. no. 4436.0).


Impact of primary caring role
The physical, emotional and financial consequences of providing primary care can be beneficial or adverse. In 1998, while some primary carers felt satisfied as a result of their caring role, some felt weary, felt lacking in energy, or frequently felt worried, depressed, angry or resentful, and some had been diagnosed as having a stress-related illness as a result of their caring role. For some carers, time and energy spent caring limited participation in other activities or impacted on their personal relationships, sleep, or financial wellbeing.

...on relationships
The impact of providing primary care on relationships was mixed. For 42%, the primary carer’s relationship with the main recipient of care was not affected by performance of the primary carer role. Of those whose relationship had changed, the result was more likely to have been a closer relationship with the main care recipient (35% of primary carers) than placing a strain on that relationship (23% of primary carers).

While a third of relationships with main care recipients became closer as a consequence of providing primary care, concurrent relationships with partners and other family members (12% and 11% respectively) were less likely to have become closer. Although relatively high proportions of those with partners and other co-resident family members (both 47%) had not had their relationships with these family members affected, more than 40% reported strained relationships or less time together.

Friendships were also unchanged for most (59%), although one quarter of primary carers reported losing touch with existing friends. Others (13%) experienced a changed circle of friends, and a small proportion (3%) widened their circle of friends.

SELECTED EFFECTS OF CARING ROLE ON PRIMARY CARERS(a), 1998

Main effect caring role has had on:

%
Relationship with main recipient of care
Brought closer together
34.7
Relationship unaffected
42.0
Relationship strained
23.4
Relationship with partner(b)
Brought closer together
12.2
Relationship unaffected
47.3
Lack time alone together
18.7
Relationship strained
21.8
Relationship with other family members(c)
Brought closer together
10.9
Relationships unaffected
47.0
Less time to spend with them
24.7
Relationships strained
15.8
Other
*1.4
Friendships
Increased circle of friends
3.2
No change
58.7
Changed circle of friends
12.8
Lost or losing touch with existing friends
25.3
Sleep
Not interrupted
52.9
Interrupted occasionally(d)
23.8
Interrupted frequently(d)
23.3
Financial position
Increased income
2.5
Unchanged
48.7
Extra expenses incurred
27.2
Reduced income
21.5
All primary carers(e)
100.0

'000
All primary carers(f)
447.9

(a) Aged 15 years and over living in households.
(b) Of those with a partner who is not the main recipient of care.
(c) Of those living in the same household with at least one family member other than the main recipient of care and/or the primary carer’s partner.
(d) Primary carers whose sleep was interrupted and who did not state the frequency of their sleep interruption were excluded prior to the calculation of percentages.
(e) Non-response to each selected effect was excluded prior to the calculation of percentages.
(f) Includes non-response to each selected effect.

Source: Caring in the Community, Australia, 1998 (cat. no. 4436.0).


...on sleep
Almost half of primary carers experienced sleep interruption as part of their caring role. Sleep interruption occurred occasionally for 24%, and frequently for 23%.

...on finances
While about half (49%) of primary carers had not undergone any change in their financial position because of their caring role, 49% had experienced an adverse impact on their financial wellbeing. Reduced income was the main effect for 22%, while 27% reported extra expenses.

Primary carers are more likely to be reliant on government pensions and allowances than people who are not carers. In 1998, pensions and allowances were the principle source of cash income for 49% of primary carers aged 15-64 years and for 20% of 15-64 year olds not providing care.


...on time
For many primary carers, the amount of time spent caring for their main recipient was equivalent to that spent on a full-time job. 38% spent an average of 40 hours or more per week, 16% spent between 20 and 39 hours, and almost half (46%) spent less than 20 hours a week on average.

Among primary carers who were living with the main recipient of their care, time spent caring tended to increase with the severity of the main care recipient's disability, and also varied according to the recipient's main impairment type. Most of those caring for someone whose main impairment was psychological (71%), speech difficulty (69%), or intellectual (54%), spent an average of 40 hours or more per week caring for that person. Smaller proportions of those caring for a person whose main impairment was physical (43%), or sight or hearing loss (37%), spent an average of 40 hours or more per week caring for him or her.

AVERAGE WEEKLY HOURS(a) PRIMARY CARERS SPENT CARING FOR THE MAIN RECIPIENT OF THEIR CARE, 1998

(a) Non-response was excluded prior to calculation of percentages.

Source: Caring in the Community, Australia, 1998 (cat. no. 4436.0).


...and on paid work
Time spent caring may impact upon a carer’s capacity to engage in paid employment. In 1998, less than half (45%) of all primary carers of working age (15-64 years) were employed. Most of these employed primary carers had not changed their weekly number of hours of paid work since taking on their caring role. However, approximately one fifth were working fewer hours. Almost one in every four employed primary carers aged 15-64 years often needed time off from work because of the role, and 7% had chosen to temporarily leave their job for at least three months to provide care to their main recipient.

Most 15-64 year old primary carers (55%) were not employed in 1998. Nearly 6% of all primary carers of working age had left work mainly to begin to take on the role of carer to their main recipient, and had not subsequently regained employment. A further 6% of 15-64 year old primary carers were not employed, and had left their job mainly to provide additional care to their main recipient.

SELECTED EFFECTS(a) ON WORK FROM PROVIDING PRIMARY CARE, 1998

Primary carers aged 15-64 years living in households

%
Employed
45.0
    Often needs time off from work because of caring role
10.8
    Has needed to leave work for at least 3 months to care for main recipient
3.0
    Has had to work more hours each week since began caring for main recipient
3.4
    Has had to work fewer hours each week since began caring for main recipient
9.8
Not employed(b)
54.9
    Left work mainly to begin caring for main recipient
5.8
    Left work mainly to provide additional care to main recipient
6.1
    Would like to have had a job while still caring for main recipient
21.9
Total
100.0

'000
Total
351.3

(a) As some of the following selected effects are not mutually exclusive, some primary carers may have experienced more than one effect.
(b) Unemployed or not in the labour force.

Source: Caring in the Community, Australia, 1998 (cat. no. 4436.0).


Among people of working age, the greater the caring role, the lesser the likelihood of having a job, particularly a full-time one. Of those who were providing primary care, 22% were working full-time and 49% were not in the labour force. By comparison, those who were providing care other than primary care were more likely to be working full-time (41%) and less likely to be out of the labour force (29%). Those who were not performing a caring role were even more likely to be working full-time (51%) and even less likely to be out of the labour force (23%).

Of all primary carers aged 15-64 years, 22% did not have a job but would like to have had one while still caring for their main recipient. Most of these carers felt it would be difficult to get a job, 29% perceiving the main barrier to be a lack of alternative care or excessive disruption to the main recipient of their care.

LABOUR FORCE STATUS OF PEOPLE AGED 15-64 YEARS LIVING IN HOUSEHOLDS, 1998

Source: Caring in the Community, Australia, 1998 (cat. no. 4436.0).


Use of respite care
Primary carers can take a break from their caring role through the use of formal respite care services. Such services may be used on a regular basis or in an emergency. They may be accessed in a nursing home, community centre, or at home.

In 1998, around 13% of primary carers had used a formal respite care service at some time in the past, and 8% had done so within the previous three months. Of those who had used respite care in the previous three months, 42% had used residential respite care, 32% had used in-home care and 24% had used a day-care centre. More detail on the use of respite care can be found in last year’s publication (see Australian Social Trends 2000, Formal respite care).



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