Pergamon Soc. Sci. Med. Vol. 45, No. 7, pp.

1017-1029, 1997
~ 1997 Elsevier Science Ltd. All rights reserved
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CAREGIVING: A C O M M O N OR U N C O M M O N
EXPERIENCE?

ANNA U HOWE,' HILARY SCHOFIELD" and HELEN HERRMAN'

'National Ageing Research Institute, Parkville 3052, Melbourne, Australia and -'VictorianCarers'
Project, Department of Psychiatry, University of Melbourne, Melbourne, Australia

Abstract---The analysis reported here aims to establish the household prevalence of caregiving in Aus-
tralia, drawing on a large scale, longitudinal survey conducted as part of the Victorian Carers Project.
Comparisons are made with a national survey conducted by the Australian Bureau of Statistics and
with Canadian and U.K. findings. Three aspects of caregiving are investigated: reported household
prevalence, taking account of differences in definitions used in various surveys; the extent of interge-
nerational exchanges involved in caregiving;and the time dimensions of caregiving, in terms of duration
and patterns of cessation of caregiving over time. A high degree of consistency is found in prevalences
of caregiving and implications for the development of policies and programs to support caregivers are
raised concerning levels of caregiving, approaches to identifying carers, targeting of services and pro-
motion of caregiving, and the spread of the experience of caregiving across the lifecycle and between
generations, ill 1997 Elsevier Science Ltd

Key words ~carers, intergenerational exchange

INTRODUCTION impact on carers, with less attention given to pat-

The role of family and other informal caregivers in
caring for frail aged and disabled people has been
increasingly recognised in social policy in Australia
in recent years. Carers were, for example, identified
as a client group in their own right from the incep-
tion of the Home and Community Care Program in
1984 and the role of carers and programs providing
support to them were a focus of investigation in a
major review of the Federal Government's aged
care strategy conducted in the early 1990s
(Department of Health, Housing and Community
Services, 1991a; Department of Health, Housing
and Community Services, 1991b). A Carers'
Package funded in the 1992 93 federal budget
included additional support by way of expanded
respite care, an information kit, increased financial
benefits and assistance with education and employ-
ment opportunities. Another particular expression
of this policy interest is the collection of data on
carers in surveys of ageing and disability carried
out in 1988 and 1993 by the Australian Bureau of
Statistics (1990, 1993, 1995). Carets and caregiving
have also been the subject of a now substantial
volume of research, with 128 studies carried out in
Australia since 1980 listed in a bibliography com-
piled in 1994 (Sitsky, 1994).
These developments in Australia parallel those in
many other countries. While policy and program
development has been informed by the growing
body of research, most of these studies have been
concerned with the nature of caregiving and its
terns of caregiving across the community. Thus,
while a number of detailed accounts of the charac-
teristics of carers and the functions of caregiving
for different disability groups have been prepared,
there has been little investigation of the extent of
caregiving in the community at any one time, or
the probability of involvement over time. These
population level questions can however be
addressed using large scale data sets on carers
that are now available. In asking whether care-
giving is a common or uncommon experience,
this paper aims to establish the prevalence of
caregiving in the Australian community, and to
investigate the dynamics of involvement in care-
giving over time.
As well as extending understanding of these
dimensions of caregiving, a better appreciation of
the prevalence of caregiving has important impli-
cations for social policy. Different policy responses
are required, and are likely to be forthcoming, if
caregiving is found to be a more common experi-
ence in which a fair proportion of the population
are likely to be involved at one time or another,
rather than an uncommon experience that only ever
affects a small and selective segment of the popu-
lation. Better understanding of the prevalence of
caregiving is especially pertinent to the debate
about policies for targeting services to those seen to
be most at risk of admission to residential care,
given that the presence of a caregiver is widely
recognised as reducing that probability.

SSM ,~5 7 C 1017

1018 Anna L. Howe et al.

METHODS four surveys carers were identified t h r o u g h large

The account of the prevalence of caregiving pre-
sented here draws on four c o n t e m p o r a r y sets of
data, two from Australia, one from the U.K. and
one from Canada, as described in Table 1. The
main source is the Victorian Carers' P r o g r a m
(VCP); in this longitudinal study, a large scale,
cross diagnostic and p o p u l a t i o n based survey was
conducted in 1993 and followed up 1994 ( H e r r m a n
et al., 1993). This state based data is set in the
national context by reference to the 1993 Ageing
and Disability Survey of the Australian Bureau of
Statistics (1993, 1995), which replicated and
extended the 1988 Ageing a n d Disability Survey
(1990). Third, an international perspective is gained
by c o m p a r i s o n with findings on caregiving from the
1990 U.K. General H o u s e h o l d Survey (Office of
P o p u l a t i o n Censuses a n d Surveys, 1992) which
replicated a 1985 survey (Green, 1988), and a sur-
vey of carers conducted in the C a n a d i a n province
of British C o l u m b i a in 1994 (Chappell and
Litkenhaus, 1995).
Both the V C P and the British C o l u m b i a surveys
were designed with a primary focus on caregivers,
and caregivers were the respondents. In the ABS
survey, the primary focus was on disabled people,
a n d in the U.K. survey, questions on caregiving
were included in a General H o u s e h o l d Survey. The
V C P collected data on family relationships and the
extent to which carers received help from others
and so enables an account to be given of the wider
social networks and intergenerational context in
which caregiving occurs. As the only longitudinal
d a t a b a s e a m o n g the four sources, the V C P also
enables discussion of the time dimensions of care-
giving to extend to consideration of changes in
involvement over time.
Details of the means of identifying carers and cri-
teria for inclusion are summarised in Table 1. In all
scale r a n d o m samples; between 1000 a n d 2000
carers were interviewed face-to-face in the ABS a n d
U.K. surveys, a n d by telephone in the V C P and
British C o l u m b i a surveys. In addition to their prac-
tical advantages, telephone interviewing is seen to
be particularly a p p r o p r i a t e to the nature of the
topics being surveyed and is now recognised as a re-
liable means of data collection in health research in
Australia (Watson et al., 1996; W a t s o n et al., 1995)
a n d elsewhere (O'Toole et al., 1986; Weeks et aL,
1983; Frey, 1983).
The same five inclusion criteria were used in all
four surveys, but there were some differences in
their specification. First, relationships between
carers a n d those they cared for were c o m m o n l y
defined; none of the surveys imposed any limi-
tations, and all thus included those caring for unre-
lated people such as friends and neighbours as well
as family members. Second, with regard to age, no
limits were specified for either carers or those they
cared for, except that the ABS survey excluded care
recipients u n d e r the age of five. Third, the U.K.
survey was restricted to carers of individuals living
in the c o m m u n i t y a n d a l t h o u g h no restriction was
stated in the British C o l u m b i a survey, it also
appears to have been similarly limited, while the
two Australian surveys allowed inclusion o f carers
who continued to care for people who had been
admitted to residential care; all surveys distin-
guished between co-resident a n d n o n co-resident
carers.
There was more variation in the specification of
the two remaining criteria. All surveys included
carers providing any care, but the ABS survey
specified selected tasks for defining principal carers
while the other definitions made reference to being
responsible for providing care. The V C P and the
ABS set a m i n i m u m time of fours hours a week

Table 1. Comparison of design, methods and inclusion criteria in surveys of carers and caregiving
Victorian Carers' ABS Ageing and U.K. General Informal Caregivers in
Program Disability Survey Household Survey British Columbia
Date 1993 and 1994 1993 1990 1994
Design Longitudinal Cross sectional Cross sectional Cross sectional
Sample 24705 households 11736 households 15957 households 24725 households
1312 carers 1393 carers number of carers not 2066carers
stated
Identification of carer respondents Self identification Face to face interview Self identification in Self identification in
in telephone survey face to face interview telephone survey
Criteria for inclusion
1. Age of care recipient All ages Under 5 years excluded All ages All ages
2. Residence of care recipient No restriction No restriction but Living in private Not specified
principal carers unlikely households(i.e.
to care for individuals excludesthose living
in residential care in residential care)
3. Relationship to care recipient No restrictions No restrictions No restrictions No restrictions
4. Care tasks Any care Principal carer assisted Any care Any care
in self care, mobility and
verbal communication
5. Time spent caring At least 4 hrs per At least 4 hrs per week No requirement but No requirement
week differentiated carers
involved > 20 hrs per
week
 Caregiving
spent in caregiving, but no time requirements were
set by either the British Columbia or the U.K. sur-
vey, although the latter distinguished between those
who spent less or more than 20 hours a week in
caregiving.
Finally, various categories of caregivers were
used in reporting the findings of each survey. As
well as co-resident and non-co-resident carers, other
groups were defined on the basis of their level of
involvement in caregiving as principal, main or pri-
mary carers and secondary carers. The effects of
these methodological considerations on the report-
ing of results and in estimating prevalence of care-
giving are taken up below.
PREVALENCE OF PRIMARY CAREGIVING
Estimates from the Victorian Carers' Project
Carers identified themselves in the VCP survey by
their response to a screening question which asked
" D o you or does anyone else in your household
take the main responsibility in caring for someone
who is aged or who has a long term illness, disabil-
ity or other problem?" Caregivers identified them-
selves in 1312 of the 24705 households contacted by
phone in the statewide random sample. These
figures give a first estimate of the prevalence of car-
egiving at 53 per 1000 households. Thus, across the
Victorian community, more than one in twenty
households are involved in caregiving at any one
time.
Those identifying themselves as taking main
responsibility for providing care to another person
are usefully termed primary carers on the basis of
the primacy of their relationship with the care reci-
pient. While six out of ten primary earers were co-
resident with the person they cared for, it is the
emotional ties between the primary caret and the
person they cared rather than residential proximity
that stand out as the c o m m o n element across the
otherwise diverse characteristics and circumstances
of the caters surveyed in the VCP (Schofield et al.,
1997).
The above estimate is based on only one primary
carer being identified in each household. In only
2.5% of households in which a carer was identified
was there more than one carer; this figure is so
small as not to affect the prevalence estimate. The
VCP definition of carers meant that where more
than one primary carer was identified, each took
the main responsibility for providing care to a
different person. The household prevalence based
on only one primary carer per household hence
slightly underestimates involvement in caregiving.
Further questions were asked of each primary carer
to establish whether they received assistance from
others who lived in the same or another household
in their caring role; details of these secondary carers
are presented below.
I 019
Estimates from the Australian Bureau of Statistics
Survey
Two estimates of prevalence were derived from
the ABS data which were collected in a household
survey: a broad estimate based on households in
which there was an involvement in any area of care,
and a stricter estimate based on the identification of
principal caregivers. Of all carers, 24% were princi-
pal carers, and 67% of all carers and 72% of prin-
cipal carets were co-resident.
Identification of principal carers from other
carers followed somewhat different methods of
identifying co-resident and non-co-resident carets,
as set out in Fig. 1. Co-resident principal caters
were identified in three steps. First, individuals who
had first reported a disability or advanced age, were
asked whether they received help from someone else
in the household and these carers then completed a
questionnaire. Second, among all co-resident carers
who provided any help, main carers were then
defined as those who provided most help with any
task or area of assistance. Third, from among main
carers, principal carers were those who provided
most help in three specific areas: personal care,
mobility or verbal communication.
Identification of non co-resident principal carers
involved only two steps. In households in which
there was no disabled or frail aged person, respon-
dents were first asked whether anyone in the house-
hold provided assistance to a person in another
household. Principal carers were then again distin-
guished on the basis of providing care in the speci-
fied areas.
These identification processes meant that fewer
carers of people in residential care were identified in
the ABS survey. By definition, co-resident caters
were all caring for people living in the community,
and non-co-resident principal carers were unlikely
Allcarers I
I
Co-resident carers Non co-resident I
Identified by disabled or Self identified in ]
frail aged person in households with no disabled[
same household or frail aged individuals ]
i
Responsible for most care'?
No Yes
Io'h0r--rorsl I a °-rersl
Principal carers
responsible for most care
in personal care, mobility
and verbal communication
Fig. 1. Definition of main and principal carers, Australian
Bureau of Statistics Survey, 1993.
1020 Anna L. Howe et al.
to claim to be providing most help in the specified
areas for individuals who were in residential care.
Using the ABS figure for all carers, and taking
account of multiple carer households, the ABS has
estimated that 17.5% of Australia's 6.5 million
households are involved in caregiving, a prevalence
of 175 per 1000 households. The stricter ABS defi-
nition of principal carers yields a lower prevalence
of caregiving, 48 per 1000 households.
RECONCILING PREVALENCEESTIMATES
The ABS definition of all carets captured a much
larger group than the VCP primary carets, but with
the ABS principal caters being a sub-set of all
caters, the question of interest is the degree of simi-
larity between the two more strictly defined groups.
As the VCP prevalence of 53 households per 1000
for primary caregivers is very close to the ABS
figure of 48 households per 1000 for principal care-
givers, it can be concluded that those who identified
themselves as primary carets in the VCP survey
would have been defined as principal carers in the
ABS survey and that the two surveys identified
essentially the same core group of caregivers.
Almost all of the difference of only 5 per 1000
between the VCP estimate and the ABS estimate
for principal carers can be explained by the in-
clusion in the VCP survey of two small groups of
carers who were outside the scope of the ABS sur-
vey. The first group included in the VCP but not in
the ABS survey were carers of handicapped children
under five. Some 4.5% of carers cared for such
young children; on a household basis, these carets
account for 2 households per 1000. Nine out of ten
of these parent carers were mothers and their in-
clusion contributed to the higher proportion of
women among VCP carers, 78%, compared to 67%
of principal caters in the ABS survey.
Second, while neither the VCP nor the ABS defi-
nitions imposed any limitations on the place of resi-
dence of the carer or care recipient, the VCP
approach enabled identification of more carets who
were not co-resident with the care-recipient, and es-
pecially those who continued to care for an individ-
ual who had been admitted to residential care. The
VCP approach identified carers who continued to
exercise responsibility for tasks such as managing
financial matters or personal affairs for people in
residential care whereas the ABS definition of prin-
cipal carers excluded such tasks and meant that
fewer continuing carers were likely be identified, as
noted above.
Almost 40% of the VCP carets were not co-resi-
dent compared to one quarter of principal carets in
the ABS survey, with fully 12% of the VCP carers
reporting themselves to be taking the main respon-
sibility for care of a person who was living in resi-
dential care; these continuing carers accounted for 6
per 1000 households. The finding that half of the
Table 2. Reconciliationof estimates of prevalence of primary care-
giving, Victorian Carers' Project and principal caregiving,
Australian Bureau of Statistics
Prevalence per 1000 VictorianCarers' AustralianBureau
households Project of Statistics
Total 53 48
Co-resident
care recipient aged 30 32
> 5 years
are recipient aged 2 not incl.
< 5 years
Non co-resident
care recipient in 15 16
community
care recipients in 6 not incl.
residential care
Common components
care recipient aged 45 48
> 5 years and living
in community
carers of people in residential care were adult off-
spring compared to just over a third of carers of
people living in the community is consistent with
the VCP survey identifying more adult offspring
carers while the ABS survey identified more spouses
among principal carers.
The VCP prevalence estimate of 53 per 1000
households and the ABS figure of 48 per 1000
households can be reconciled by disaggregation into
their common and different component groups, as
set out in Table 2. Focusing on the figures for co-
resident carers, both the VCP and ABS surveys
yield estimates of the prevalence of co-resident care-
giving of 32 per 1000 households. However, the
VCP survey includes 2 households per 1000 in
which carers were caring for handicapped children
under 5; excluding this figure brings the VCP co-
resident carer prevalence to 30 per 1000 households.
Turning to the non-co-resident prevalences, the esti-
mates were 21 and 16 per 1000 households for the
VCP and ABS respectively. Excepting the 6 per
1000 households in which carers reported caring for
a person in residential care brings the VCP non-co-
resident prevalence to 15 per 1000.
The VCP prevalence net of the two groups which
were not included in the ABS survey is 45 per 1000,
closely approximating the ABS figure of 48 per
1000. The small remaining difference can be attribu-
ted to a sampling effect, including allowance for the
ABS sample being national while the VCP sample
was limited to Victoria.
INVOLVEMENT OF OTHERS IN CAREGIVING:
SECONDARY CARERS
To the extent that carets who had the main
responsibility for providing care received assistance
from others, this secondary caregiving needs to be
taken into account to describe the full involvement
of households in caregiving across the community.
In the VCP survey, 84% of carets reported that
others assisted in caregiving. Caregivers identified
 Caregiving 1021

an average of two helpers each, with help coming
from a wide range of family members and friends.
The availability of secondary carers was influenced
by kin relationships between the caregiver and care
recipient and living arrangements of both, especially
the presence of others in the household. Focusing
on relationship groups, there was no significant
difference in the proportions reporting that they
received help from others, which ranged from 80%
for spouse carers and 82% for parent and other
carers, to 87% for adult offspring carers.
That most carers are able to draw on help from
one relative or another, or a friend, demonstrates
the family and social networks in which caregiving
occurs. The most common source of help was chil-
dren, reported by 55% of carers, followed by part-
ners and siblings, each reported by some 40% of
carers; other relatives and friends were also each
reported as helpers by one third of carers, and 15%
had help from their parents (Schofield et al., 1997).
These parent helpers were presumably the grand-
parents of handicapped children or young adults,
consistent with the 19% of care recipients aged
under 30.
The availability of potential secondary carers is
also indicated by the presence of others in the
carers or the care recipients household as shown in
Table 3; only children in the household aged over
10 years have been regarded as potential carers.
Allowing for the 12% of carers who cared for indi-
viduals in residential care, over half lived with
others than their care recipient. Just on 32% of
carers lived with their care recipient and others, and
another 24% lived with others but not their care
recipient; the majority of these care recipients who
lived elsewhere lived alone. Another 30% of carets
lived with their care recipient only, and so would
have to rely on secondary carers living elsewhere, as
would the 5% of carers who lived alone. The 2% of
carers who lived alone and whose care recipient
also lived alone can be seen as having the least
ready access to help from secondary caregivers.
With an average of two secondary carers for each
primary carer, and assuming that five out of the six
carers who live with other potential carers do in
fact have a secondary carer in the same household,
it can be estimated that three out of four of the sec-
ondary carers live in households separate to the pri-
mary carer. On this basis, another 67 households
per 1000 are involved in caregiving ( . 8 4 x 5 3 x
2 × .75). Adding these secondary carers to the pri-
mary carer households yields a total prevalence of
120 per 1000 households. If only half the secondary
carers are in other households, that is, of the two
secondary carers, one is in the same household and
one in another, the number of additional house-
holds involved in caregiving is 45, and total preva-
lence is 98 households per 1000.
The ABS survey also sought information from
principal carers as to whether they received help
from others. Just under half (48%) reported this to
be the case. Applying the same conditions as for
the VCP survey, namely an average of two second-
ary carers each and three out of four living in sep-
arate households, yields a prevalence for secondary
caregiving of 35 per 1000 households
(.48 × 48 × 2 × .75). Added to the figure for princi-
pal carers, the total prevalence reaches 83 per 1000
households. This figure intermediate between the
prevalence estimates for principal carers and all
carers is consistent with secondary carers being
identified among all carers but not meeting the cri-
teria for principal carers.
Part of the difference between the VCP and ABS
figures for secondary carers can be attributed to the
higher proportion of spouse carers in the ABS sur-
vey combined with the lesser likelihood of these
spouse carers receiving help. Spouse or partner
carers were truly half as likely to report receiving
help as other groups of carers in the ABS survey
and a similar pattern was apparent in the VCP find-
ings.
CARING ACROSS THE GENERATIONS
A further perspective on the prevalence of care-
giving comes from consideration of the extent to
which it involves intergenerational exchanges.
Earlier Australian studies focusing on caregiving for
frail elderly people found that caregiving extends
across generations (Australian Council on the
Ageing and Commonwealth Department of
Community Services, 1985; Kendig, 1986), and sur-
veys covering all age groups can be expected to
show an even wider age and generation span of
carers. The intergenerational nature of caring is

Table 3. Availabilityof secondary carers, Victorian Caters Project. 1993

Carer livingarrangements (% of all caregivers) Care recipient Total
Lives with others Lives alone
No. % No. % No. %
Lives with others incl. care recipient 312 31.9 n.a. n.a. 312 319
Lives with others only 65 6.6 167 17.I 232 23.8
Lives with care recipient only 282 28.8 n.a. n.a. 282 28.8
Lives alone 16 1.6 2(1 2.0 36 3.7
Recipient lives in residential care 114 I 1.7 n.a. n.a. 114 11.7
Total 789 80.8 187 19.2 976 100.0
1022 Anna L. Howe et al.

Table 4. Age of caregivers by age of care recipients, Victorian Carers' Project, 1993
Carer age Percent of all caters Total
Age of care recipient
Years 0 15 15 49 50 69 70+ % No.
under 30 1.9 1.0 2.2 1.3 6.3 62
30-49 9.7 8.0 4.9 22.1 44.7 437
50 69 0.4 5.0 8.0 25.2 38.6 377
70 + 0.1 0.6 1.3 8. I 10.2 80
Total % 12.1 14.6 16.4 56.7 100.0
No. 118 142 161 555 976

seen in b o t h the kin relationships between care-
givers a n d care recipients, and in the age range of
both.
The relationships between caregivers a n d care
recipients found in the V C P survey d e m o n s t r a t e
that most caregivers were not of the same gener-
ation as the person they cared for: more t h a n two
out of three carers cared for someone in a different
generation. O f these different generation carers,
most were carers o f people in a n older generation.
Adult offspring caring for elderly parents were the
largest single g r o u p o f carers, accounting for 39%
of all carers. Carers of those in a younger gener-
ation were mostly parents caring for h a n d i c a p p e d
children, accounting for 20% o f all carers.
Some 23% o f carers were in the same generation
as the person they cared for. Same generation
carers were mainly spouse or partner carers and in
two thirds of these cases, b o t h the carer a n d care
recipient were over 60. The remaining 18% of
carers whose relationship to the care recipient was
categorised as " o t h e r " included a mix of same and
different generations. Carers in this group reported
that they were variously caring for a sibling, other
relative, parent-in-law, g r a n d p a r e n t , grandchild, or
a friend.
The intergenerational nature of caregiving is also
seen in the ages of caregivers and those they care
for. In the VCP, carers ranged in age.from 15 to 80
years, a n d care recipients from infants u n d e r one
year to individuals close to 100 years of age
(Schofield et al., 1997). The diversity of age re-
lationships involved in caregiving across the life
cycle is seen when the ages of caregivers and care
recipients are examined together, as in Table 4, not-
ing t h a t the relationships seen are affected by the
somewhat arbitrary age groups adopted. The most
typical age relationship was for caregivers aged
between 50 a n d 69 to be caring for someone aged
70 years or over; the care recipients could as likely
be aged parents as spouses. A n o t h e r 22% o f carers
were aged 30 49 a n d were caring for someone aged
70 years or over, mainly aged parents. O t h e r age as-
sociations were diverse. Older carers o f older people
were a minority group, with only 8 % of carers aged
70 years a n d over caring for someone in the same
age bracket; there were as m a n y caters aged 50-69
caring for someone in the same age range, and in
the age group 30-49 caring for someone aged 15-
49. The 6 % of carers aged u n d e r 30 were involved
in caring across the full age range. There were only
10 carers aged from 15 to 20 years, five of w h o m
cared for parents a n d five cared for individuals in
the " o t h e r " relationships group.
The sources of support from secondary carers
reported above give a final indicator of the interge-
nerational exchanges involved in caregiving.
I n v o l v e m e n t o f younger generation secondary carers
was most c o m m o n , t h r o u g h the involvement of
carers' own children, a n d older generation involve-
m e n t came mostly t h r o u g h g r a n d p a r e n t helpers.
TIME DIMENSIONS OF CAREGIVING
Duration o f caregiving
The V C P survey provides i n f o r m a t i o n on two
time dimensions o f caregiving. First, the d u r a t i o n
of caregiving was f o u n d to vary markedly with the
relationship between the carer a n d care recipient, as
shown in Table 5. Overall, some 16% of carers had
been caring for up to a year, a n o t h e r 4 3 % h a d
been caring for from one to five years a n d 4 1 % had
been caring for more t h a n five years. Carers who
were caring for h a n d i c a p p e d children experienced
by far the greatest d u r a t i o n of caregiving; two out
of three of this g r o u p h a d cared for more than five
years c o m p a r e d to one out o f three other carers. So
while accounting for only one fifth o f all carers,
each of these parent carers accounts for a m u c h
higher p r o p o r t i o n of the years o f care provided. On

Table 5. Duration of caregiving by carer group, Victorian Carers' Project, 1993

Carer relationship group Duration of caregiving Total
< 1 yr 2 -5 yrs > 5yrs % No.
Adult offspring 18.8 45.6 35.3 100.0 383
Spouse/partner 17.0 40.3 42.6 100.0 223
Parent 8.5 29.7 61.8 100.0 199
Other 17.8 52.7 29.6 100.0 169
Total 16.1 42.5 41.4 100.0 974~
"2 missing cases.

the other hand, caring for older people is more time
limited, and carers of older people were more likely
to have reported a shorter duration of caregiving.
Changes in involvement in caregiving over time
Cross sectional data provides only one view of
the time dimensions of caregiving. As with cross
sectional surveys of other time limited experiences,
such as length of stay in residential care facilities,
those with short experiences are under-represented
relative to those with long experiences (Howe, 1983;
Keeler et al., 1981). The longitudinal component of
the VCP survey gives valuable information on
changes in caregiving over time, and enables investi-
gation of the extent to which the 5% of households
involved in caregiving change over time; the greater
the degree of change, the more households will be
involved in caregiving over time.
The first VCP follow-up survey was conducted
one year after the initial survey, and carer status
was established for 80% of the initial respondents.
The estimate of turnover of carers is based on ces-
sation of caregiving in one year only as those who
had ceased caregiving by the second follow-up were
from an already selected population. Some 23% of
carers reported that their caregiving role had ceased
over the first year. As those who could not be con-
tacted may have been more likely to have experi-
enced a change in household arrangements
associated with cessation of caregiving, this figure
may be a low estimate. The consistency of the esti-
mates of prevalence of caregiving based on cross
sectional surveys carried out at different times
suggests that every caregiving relationship that
comes to an end is replaced by another newly estab-
lished relationship. Assuming such a balance
between those ceasing to be caregivers and those
taking on the role, an annual turnover of 23%
would see some 12 households per 1000 newly
involved in primary caregiving each year (.23 × 53).
Further, it can be inferred from the difference
between the prevalences of primary or principal car-
egiving and all caregiving that at least some of
those who become primary caregivers will already
have been providing care at a less intensive level.
Patterns of cessation of caregiving varied between
groups of carers, as shown in Table 6. Those most
likely to have ceased caring were "other" carers,
almost half of whom had ceased caregiving. Those
Table 6. Cessation of caregiving by carer group, at 12 months, Victorian Carers" Project, 1994
Caret relationship group
Still caring
Adult offspring 76
Parent 92
Spouse/partner 79
Other 56
Total % 77
No. 608
Caregiving 1023
least likely to have ceased caregiving were parents;
the caregiving role continued for nine out of 10
parent carers. There were no deaths among the chil-
dren receiving care from parent carers, and the rate
at which caring ceased for other reasons was well
below that for other carers. Spouses and adult off-
spring had similar levels of continuation of caring,
but among those for whom caregiving had ceased, a
change in caring arrangements was slightly more
likely among adult offspring than for spouses.
Cessation of caring roles was explained by three
sets of reasons. First, in almost four out of 10
cases, the care recipient had died. Second, in almost
another third, there had been a change in care
arrangements; these situations were evenly divided
between another person taking over as carer and
admission to residential care. Caregivers health pro-
blems were a contributing factor in about half of
these cases. Again it should be noted that admission
did not always mean that the care-giving role was
relinquished; admission to residential care
accounted for only 27 of the cases in which caregiv-
ing was relinquished, but there were almost as
many cases, 23, where admission had occurred and
the caregiving role continued.
The third set of factors that led to the cessation
of caregiving were associated with positive changes
in the well-being of the care recipient such that they
no longer required care. These positive outcomes
occurred in the remaining third of cases.
It is evident that not all caregiving situations are
permanent, with cessation of caregiving associated
with a variety of changing circumstances. The
reasons found for cessation of caregiving indicate
that factors associated with the care recipient are at
least as important as considerations of the care-
givers, and that carers deciding to "give up" the
caring role is a particularly rare event. Of those
who were still caring, a few reported that they were
caring for a different person than previously. While
only small in number, these reports add another
dimension to the dynamics of caregiving, with some
who had ceased to be carers at one time resuming
these responsibilities at a future time, for the same
or another care recipient. The longitudinal perspec-
tive shows caregiving to be dynamic, with a chan-
ging involvement both within and between
households over time.
Percent of carers Total
Care recip, died No longer caring % No.
II 13 100 305
0 8 100 18 I
12 9 t 00 172
12 33 100 129
9 14 100
69 110 787
1024 Anna L. Howe et al.
This dynamic picture of involvement in caregiv-
ing accords with that reported in a longitudinal
study of a cohort of 55 year olds in Scotland
(Taylor et al., 1995). At the first contact, 35% of
the total sample were identified as carers, and this
prevalence was stable at the three year follow-up.
There was however considerable turnover among
carers: as many carers had discontinued caring as
continued to care over the three years, giving a
turnover of 50% among carers or 17.5% for the
sample population. Cessation of caregiving was
attributed to a diversity of factors, with death of
the care recipient accounting for only a minority of
cases. Of those who had not initially been carers,
12% had become involved over the three years.
Allowing that some in the initial sample were caring
before age 55 but new carers came only from within
the study cohort, and that cessation of caregiving at
older ages is offset by uptake at younger ages, the
number taking up caregiving appears sufficient to
balance those who cease, so maintaining the overall
prevalence.
INTERNATIONALFINDINGS
Comparison of the Australian estimates of the
prevalence of caregiving with those generated by
substantially similar surveys in the United Kingdom
and British Columbia demonstrates the extent of
commonality of the phenomenon of caregiving and
the effects of definitional and methodological con-
siderations on prevalence estimates. Details of the
two surveys drawn on here have been given above
in Table 1.
The U.K. General HousehoM Survey
Informal carers identified themselves in the 1985
and 1990 General Household Surveys in the U.K.
by confirming that they had "extra family responsi-
bilities" because they looked after someone who
was sick, handicapped or elderly, in the same
household or in another private household; caring
for individuals in residential care was excluded.
A range of prevalence estimates were reported
from the 1990 survey on the basis of differing
degrees of involvement in such responsibilities
(Office of Population Censuses and Surveys, 1992,
p. 4). In 1990, 21% of U.K. households had a
carer, and 15% a main carer; main carers were
those who took the major responsibility for the care
of the dependent person, either alone or jointly.
The figure for co-resident carers was 5% of house-
holds, and almost all co-resident carers were main
carers. In 5% of households, caregiving took up 20
hours a week or more of the carer's time; the 20
hours included the time spent on caring activities,
supervision and being in attendance in case help
was needed. Almost all of the carers for whom care-
giving took up 20 hours or more were co-resident.
The substantial overlap evident between co-resident
carers who were main carers and those caring for
more than 20 hours a week indicates a prevalence
of intensive caregiving of around 5% of house-
holds.
Comparison of the 1990 and 1985 results found
only small differences in particular areas (Office of
Population Censuses and Surveys, 1992, pp. 1-3).
Reporting on a population rather than a household
basis, there was a slight but not statistically signifi-
cant increase in the proportion of all people who
were caring, from 14 to 15%. This increase was
entirely due to people caring for someone not living
in the same household. Women's involvement in
caregiving had increased more than men's, and car-
ing for parents on the part of those aged between
45 and 64 had increased more than other relation-
ships, with the greatest increase in care recipients
being among the very old, those aged 85 years and
over. There was however some indication that the
time spent in caring had fallen slightly from 1985 to
1990; this outcome may have been the result of in-
clusion of more non co-resident carers who spent
less time in caregiving. There were only minor fluc-
tuations in patterns of disability reported and in the
kinds of help provided by caregivers between the
two surveys. The proportions reporting that the
care recipient received regular visits from various
health or social services remained steady between
the two dates, at 23% receiving home help and
15% receiving community nursing. Fewer carers
however reported that their dependant was visited
regularly by their doctor. These findings present a
picture of overall stability in patterns of caregiving,
but as no data were reported on duration of care-
giving, it is not possible to estimate changes over
time in the likelihood of the same or different
households being involved in caregiving.
Survey of informal caregivers to adults in British
Columbia
The household prevalence of caregiving reported
in a 1994 survey of carers in British Columbia was
just over 8%, at 84 household per 1000 (Chappell
and Litkenhaus, 1995, p. 10). In this telephone sur-
vey, carers identified themselves in response to a
question about the provision of any type of unpaid
help to another person with a long term (defined as
lasting or expected to last six months or more) ill-
ness, physical disability, mental handicap, mental
health or behavioural problem. This survey imposed
no requirements on care tasks or hours involved in
caring and included both primary and secondary
carers. Although no residence restrictions were
specified, it appears that only carers of individuals
living in the community were covered as no men-
tion is made of carers of people in residential care.
Of the British Columbia carers, 63% reported
that they were primary carers (Chappell and
Litkenhaus, 1995, pp. 18-19), giving an estimated
prevalence for primary carers of 53 per 1000 house-
 Caregiving
holds, the same as the VCP figure. The proportion
of the Canadian carers who reported receiving help
from another person, 87%, is also very close to the
Victorian figure, 84%. The difference between the
total British Columbia prevalence of 84 per 1000
households and the VCP prevalence for primary
and secondary carers combined, 120 per 1000
households, stems from different identification pro-
cesses. The VCP estimate as calculated above was
based on primary carers with secondary carers hav-
ing two helpers each, with these secondary carets
then accounting for 56% of all carer households
compared to one third of the British Columbia
figure. The total British Columbia prevalence corre-
sponds very closely with the ABS estimate for prin-
cipal carers and secondary carers, 83 per 1000
households.
A further comparison, between the British
Columbia figures and estimates for the U.S., is
reported by Chappell and Litkenhaus (1995). They
cite a prevalence of 8% given in a 1989 U.S. study
of caregiving for adults aged 50 years and over
(Beigel et al., 1991), comparable to the British
Columbia findings.
Comparison with Australian findings
Comparisons between the U.K., British
Columbia, Victorian and Australian findings are
summarised in Table 7. Ranking of prevalence esti-
mates from those based on the most inclusive defi-
nitions to more selective definitions demonstrates
both their overall similarity and the effects of defini-
tional differences. Starting with the most general
figures, for all carers in the U.K. and the ABS sur-
vey in Australia, the prevalences are comparable at
210 and 175 per 1000 respectively. Focusing on pri-
mary and secondary caters in the Australian,
Victorian and British Columbia estimates, and main
but non co-resident carers in the U.K. gives esti-
mates ranging from around 80 to 150 households
per 1000. The most restricted prevalence estimates,
based variously on principal carers as defined by
the ABS, primary carers in the VCP and co-resident
carers in the U.K. converge further, at around 50
per 1000 households.
The main difference between the U.K. and
Australian findings was that only one in four of all
U.K. carers was co-resident compared to two thirds
of the Australian carers overall and the Victorian
carers. Some of this difference can be attributed to
differences in age structure and consequent house-
Table 7. Summary of estimates of prevalence of caregiving, Victoria, Australia, U.K. and British Columbia
Australian estimates Prey. per
ABS all carers 175
VCP primary and secondary carers 120
ABS principal and secondary carets 83
VCP primary carers 53
ABS principal carers 48
1025
hold patterns. With more of the U.K. population
being very elderly people in single person house-
holds and hence if having a carer, the carer is more
likely to be non-co-resident; the increase in non co-
resident carers of very elderly parents was especially
noted in the comparison of the 1985 and 1990 U.K.
surveys. This interpretation is born out by the find-
ing that 48°/, of the U.K. carers were caring for
parents or parents-in-law (Office of Population
Censuses and Surveys, 1992, p. 6) compared to
39% of the VCP carers being adult offspring; in
both countries, adult offspring carers are less likely
to be co-resident than spouse carers or parents car-
ing for handicapped children. Conversely, only 10%
of U.K. carers were caring for spouses and two per
cent for children under 16 compared to 23 and 12%
respectively lbr Victorian carers, and far more of
the U.K. carers were caring for other relatives,
friends or neighbours, 37%, compared to 17% of
Victorian carers.
It can be concluded that the various surveys that
have been analysed here are reporting substantially
similar prevalences. That differences between find-
ings can be reconciled or explained by reference to
aspects of the survey methodologies or underlying
demographic differences in the populations surveyed
adds to the confidence in concluding that the simi-
larities are real. At the same time, it is recognised
that there are some differences in the detailed pat-
terns of caregiving within these broad similarities.
DISCUSSION
The estimates of the prevalence of caregiving and
the nature of household involvement in caregiving
reported here enable four sets of conclusions to be
drawn about whether caregiving is a common or
uncommon experience.
Consistency of caregiving prevalence estimates
The first conclusions concern the consistency of
the extent of caregiving across the community.
Australian estimates suggest that between 120 and
175 households per 1000 are involved in some kind
of caregiving, of which around 50 per 1000 are
involved in more intense, primary caregiving. The
range of prevalence estimates summarised in Table 7
shows that the Australian figures are consistent
with those reported in the U.K. and British
Columbia when allowance is made for differences in
1000 h~'holds International estimates
190 All carers U.K.
130 Main carers U.K.
84 Primary and secondary British Columbia
53 Primary carers British Columbia
50 Co-resident carers U.K.
1026 Anna L. Howe et al.
methodologies of the various surveys and in popu-
lations and household structures. When the preva-
lence estimates incorporating primary and
secondary caregiving are taken together with the
extent of intergenerational exchange and the
dynamics of caregiving over time, caregiving
emerges as a more common than uncommon experi-
ence.
Levels of caregiving
The second set of conclusions derive from the
common identification of principal or primary
carers as a sub-set of all carers. Rather than just
reflecting differences in definitions, the identification
of different levels of carer involvement sheds some
light on the way in which carer roles are taken on
in the community. The different figures serve to
show that of all those who become involved in any
caregiving, some come to take on the main respon-
sibility for caring as care recipient needs and cir-
cumstances change. The former, larger number of
carers who are providing limited assistance thus
serve as a base from which the latter, smaller group
emerge as they assume the role of primary care-
givers. Thus, while many of all ABS carers provided
care in only one task and the intensity of caregiving
was less than that for principal carers, it is from
this larger group that the principal carers emerge.
Similar levels of involvement are seen in the U.K.
reporting of all carers, main carers and carers giving
more than 20 hours a week to caregiving.
Identification of the involvement of secondary
carers not only increases the household prevalence
of caregiving but demonstrates that primary or
principal carers carry out their roles within a more
extensive network of family and social exchanges.
This evidence of different levels of involvement in
caregiving at a population level provides a wider
context in which findings of smaller scale studies of
more selected groups can be interpreted and gener-
alised.
Complementing these findings about the process
by which some carers become principal carers,
other findings show something of the processes of
exiting from caregiving. Methodological consider-
ations again shaped these findings, with identifi-
cation in terms of taking responsibility rather than
performing care tasks especially affecting the in-
clusion of carers of people who had been admitted
to residential care. The identification of 12% of
carers caring for people in residential care in the
VCP survey was a result of identification of carers
in terms of taking responsibility for providing care,
with the range of such responsibility extending to
areas such as social support and managing financial
matters or other personal affairs, which could be
provided to individuals in residential care. In con-
trast, the ABS definition in terms of specific caregiv-
ing tasks effectively precluded identification of these
continuing carers.
Approaches to identifying caters
The third set of conclusions concern approaches
to identifying carers for research, program develop-
ment and policy purposes. Whether they identify
themselves as carers, as in the VCP survey, or
whether they are identified by care recipients, as for
co-resident carers in the ABS survey, there is a
likely close agreement in the identification of pri-
mary carers. Although the ABS definition of carers
is technically more restricted than the VCP defi-
nition, the very close correspondence between the
VCP and ABS prevalence figures suggests that
those who identified themselves as carers in the
VCP survey imposed quite strict limits on their own
definitions of caregiving and care recipients in terms
of frailty and disability.
It is of particular note that the more subjective
approach of self identification resulted in fewer
people reporting themselves to be carers than the
more objective approach of seeking information on
task based provision of care, with restriction of the
list of tasks reducing the rate of carer identification,
and notwithstanding the identification of more
carers of people who were in residential care. It is
evident that not all of those who performed instru-
mental tasks for others had the affective relation-
ship with the care recipient that was the basis of
self identification of carers, as captured in the
phrase "being responsible for".
A further consideration that supports this in-
terpretation is that respondents in the VCP survey
appeared readily able to distinguish between being
responsible for providing care to a disabled person
or frail elderly person and having "usual family
responsibilities". The VCP survey included a sample
of women who identified themselves in the latter
terms to provide a comparison group to those who
identified themselves as carers and respondents were
readily able to place themselves in one or other
group. Respondents to the U.K. General
Household Survey were also evidently able to differ-
entiate themselves in these terms as that definition
of carers made reference to "extra family responsi-
bilities". The personal relationship between the
carer and care recipient implied by having responsi-
bility for care provision was also found to be inte-
gral to caregiving in the British Columbia survey.
The most frequently provided type of care, reported
by all but two per cent of carers, was emotional
support, well ahead of the 75% reporting the next
most often provided help, transport (Chappell and
Litkenhaus, 1995, p. 21).
Related to these different approaches to identifi-
cation of carers is the question of whether the care
recipient recognised the caregiver's role. This reci-
procal recognition was established in the ABS sur-
vey as initial identification of the carer by the care
recipient was confirmed in the case of co-resident
carers who were asked to complete a questionnaire
 Caregiving
about their caring roles. There was no equivalent
confirmation in the VCP survey or for non-co-resi-
dent carers in the ABS. Reciprocation between self
identification of carers and identification by care
recipients could usefully be confirmed by establish-
ing such mutual recognition of the roles, as
occurred for co-resident carers in the ABS survey.
These findings have particular implications for
policy makers seeking to define carers' eligibility for
services. First, concerns that self identification
might inflate the number of carers are not substan-
tiated and second, simple self identification appears
to be as appropriate a means of defining primary
caregivers as requiring certain care tasks to be per-
formed.
Targeting of services and promotion of caregiving
The fourth set of conclusions relate to policy and
program implications. The timing of the four sur-
veys and earlier surveys in the U.K. and Australia
evidences the growing policy interest in caregiving
from the mid 1980 s to the mid 1990 s, and further
collection of official statistics may be a sign of con-
tinuing interest. This interest has also seen the rec-
ognition of caters in service programs; the lower
rates of admission to residential care among those
with carers has especially focused attention on sup-
port for carers as a means of limiting use of resi-
dential care. With the emergence of policies
targeting services on clients assessed as having the
highest level of need, the treatment of carer roles in
assessment becomes critical in determining the bal-
ance to be reached between providing services to
supplement caret contributions or to substitute for
those inputs for individuals without carers (Fine
and Thompson, 1995; Bebbington and Davies~
1993).
The pattern of emergence of primary carers from
a wider group of people who provide help in some
task or other presents a choice between policies that
foster support widely across the community, or
those which define eligibility for support only once
a high level of involvement in caregiving has been
reached or significant burden experienced. The lat-
ter approach is likely to follow from policies of tar-
geting services only to clients with highest levels of
need, but could prove counter productive. Instead,
providing support as needs emerge would provide
assurance to all carers that support would be avail-
able for those who came to take on more intensive
roles as care recipients' needs and circumstances
change and so maximise the broad base of carers
from which primary carers are drawn. If restriction
of support erodes this broad base, the consequence
may be a reduction in motivation and capacity to
become involved in further caregiving. A study of
carers of highly dependent care recipients in
Victoria involving a follow-up survey at 18 months
found that admission to residential care was signifi-
cantly and independently associated with carers'
1027
capacity and motivation to continue caring, and
that different factors affected these two domains
(Wells and Kendig, 1996). The need to maximise
both capacity and motivation to care is indicated
by these findings.
Strict definition of caregiving is also likely to
restrict support to those caring for individuals living
in the community, yet extension through the period
of admission to residential care may be important
for the on-going well-being of both the carer and
the individual they care for. The implications of
excluding caters of individuals in residential care in
considering support programs may thus be more
significant than their numbers suggest.
In resolving the choice about definitions of care-
giving and eligibility for support, the targeting
approaches that are coming to be applied in the
community care field could usefully be assessed
against the population based approaches that have
been established in public health (Beaglehole et al.,
1993, pp. 85--93). Community care services have
much in common with secondary prevention strat-
egies, directed to those among whom a condition is
established. The requirements for effective second-
ary prevention, namely a natural history that
includes an early period when the condition is easily
identified and a treatment that slows or eliminates
progression to a more serious stage, are especially
applicable to support measures for those who have
identified themselves as primary carers. The benefits
of spreading resources over as large a part of the
relevant population, through many early interven-
tions, each of which may have a small impact but
have a considerable interaction effect, need to be
considered vis-fi-vis the concentration of additional
resources on later interventions that are expected to
have greater impacts at more narrowly defined mar-
gins. The finding that carers' "'giving up" was a
rare event suggests that the primary function of
support programs should be to promote the well-
being of carers in their on-going role rather than
aiming to preclude what is an unlikely event. Twigg
(1993) has made the general point about the limited
scope for effective interventions for carers who are
"on the brink" of giving up. lnstead, the analysis
presented here indicates the need to support those
who are "on the threshold" of their involvement in
caregiving.
Evidence of the effectiveness of strategies provid-
ing early and simple support comes from one of the
interventions carried out as part of the VCP in
which an information kit was offered to carers.
Take up of this offer was higher among carers
whose well-being was already affected by caregiving
in terms of feelings of greater overload and lowered
life satisfaction, and who were thus motivated to
seek information about assistance; subsequent use
of the kit was however lower among those with
greater anxiety and depression, and with more
health problems on the part of the carer and care
1028
recipient, indicating that stress a n d feelings of bur-
den preclude use o f the i n f o r m a t i o n ( M u r p h y et al.,
1995). Similar findings were reported in an evalu-
ation of a training p r o g r a m for carers of people
with dementia c o m p a r e d to a n o t h e r group who
received only m e m o r y training a n d a third group
who had to wait for six m o n t h s before receiving the
program. The p r o g r a m group were found to have
significantly lower stress levels a n d significantly
lower rates of admission to residential care
(Brodaty and G r e s h a m , 1989).
A more common than uncommon experience
The final conclusion which is o f b r o a d e r policy
relevance is that the spread of caring across age
groups and the extent o f intergenerational exchange
in caregiving that have been reported here indicate
that caregiving is not an experience restricted to
any one stage of the lifecycle. N o r is the need for
care a m o n g any one age group met by a response
from a particular age group; rather, carers are
d r a w n from a wide age range a n d from diverse kin
relationship groups. Inclusion of secondary carers
extends the range of intergenerational exchange
involved in caregiving. W h e n cross sectional preva-
lence estimates o f caregiving are supplemented with
some indicators of the dynamics of caregiving,
involvement in caregiving at some time in the life
cycle emerges as an even more c o m m o n experience.
In covering a wide spectrum of age a n d relationship
groups, and a dynamic rather than a static view,
policies that value a n d foster these exchanges have
m u c h to offer in counteracting the negative con-
struction of intergenerational conflict.
Acknowledgements--The research reported here was car-
ried out as part of the Victorian Carers Project, funded by
the Health Promotion Foundation of Victoria. The sup-
port of Professor Bruce Singh, and Associate Professor
Sidney Bloch, Department of Psychiatry, University of
Melbourne is gratefully acknowledged.
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