Caring-related inequalities in psychological distress in Britain during the 1990s
Journal of Public Health Medicine
Caring-related inequalities in psychological distress in Britain during the 1990s
Michael Hirst 0 1
0 Social Policy Research Unit, University of York , Heslington, York YO10 5DD
1 Michael Hirst, Research Fellow
Background This paper examines recent trends in inequalities in psychological distress associated with the provision of unpaid care by those who look after frail older people and younger disabled adults and children. Caring activities intensified during the 1990s, associated with increasing amounts of time devoted to the more demanding types of care and to those relationships that typically make heavy demands on the carer. Heavy involvement in caregiving is often associated with symptoms of anxiety and distress, and the intensification of care may increase rates of distress in carers relative to that in non-carers. Methods A secondary analysis was carried out of data drawn from the first 10 waves of the British Household Panel Survey covering 1991-2000, based on around 9000 adults interviewed personally in successive waves. Symptoms of psychological distress, including anxiety and depression, were assessed using the 12-item General Health Questionnaire. Results Carers present higher rates of distress than noncarers and the health gap widens as the definition of caregiving focuses on those living with the person they care for, and those devoting 20 h or more per week to their caring activities. Differences in distress rates between carers and non-carers are greater for women than for men. There is no support for the hypothesis that inequalities in distress associated with caregiving have increased over time. Conclusion There was no change during the 1990s in the extent of inequalities in psychological distress associated with caregiving in Britain. The need to maintain carers' emotional and mental health is as compelling as ever it was.
health inequalities; carers; gender; psychological distress
Most disabled and elderly people live in private households and
the support they receive in the community is almost wholly
provided by family, friends or neighbours. In 2000, there were an
estimated 6.8 million adults providing unpaid care for disabled
and elderly people in Britain, including 1.7 million who devoted
at least 20 h a week to their caring activities.1 Recent policy
initiatives have drawn attention to carers’ needs for
information, support, and help in maintaining their own health.2
Driving current policy interest in supporting the caring role of
individuals and families is the need to plan for an increasing
number of elderly people who will require health and social
care.3 A related issue, and the focus of this paper, is the changing
nature of unpaid care – the types of help given and the time
spent on caring activities – and the implications for carers and
for carer support.
Comparing patterns of caregiving in the 1985, 1990 and 1995
General Household Survey, Parker detected ‘a continuing
sharpening of the sharp end of caring’, that is an intensification
of caring activities particularly in households where the carer
lives with the person they care for.4 The proportion of carers
with sole responsibility for the person they look after increased,
especially after 1990.5 Carers providing the more demanding
forms of care – help with personal care (for example, bathing,
dressing or using the toilet) and mobility – also increased, as
did the amount of time devoted to their caring activities.6 It is
estimated that the number of carers providing at least 20 h care
per week to someone aged 65 and over increased by 190 000
between 1985 and 1995.7
These trends were associated with increases in spouse care
and parents caring for children under 16 years; caring for elderly
parents who lived in a different household from that of the carer
also increased, particularly parents aged 85 years and over; in
contrast, the less intensive forms of practical help (for example,
housework or shopping) to friends and neighbours declined.8
The latest General Household Survey, conducted in 2000,
indicates that these trends have mostly continued beyond 1995,
or have not been reversed.1 Comparable trends are evident when
charting annual changes in caring activities from 1991 to 1998
using the British Household Panel Survey.9 More adults are
becoming heavily involved in providing longer episodes of
care,10 and further increases in caregiving by elderly spouses or
partners are anticipated.3
Public health implications
A sustained trend towards more intensive caregiving would
have three major implications. First, there is the impact on
carers themselves. Although carers can derive considerable
satisfaction from their caring experiences,11 there is an
abundance of studies which show that caring for disabled and elderly
people is associated with increased rates of psychological
distress, including anxiety and depression.12,13 There are also
carers’ own reports of adverse effects on their social and
emotional well-being, as well as evidence of increased psychiatric
illness and compromised immune response in those burdened by
caring responsibilities.1,14,15 Evidence of adverse effects on
carers’ physical health is less conclusive, although some carers
face particular risks of injury associated with heavy caring
activities.16 Thus, an increase in the intensity of caring activities
might increase the health risks for carers, especially of
Second, the health of carers is important for maintaining the
quality of their caring relationships. Coping with the demands
of care, and a willingness to continue caring, are both associated
with lower levels of stress in carers.17 Equally, carer ill health
or distress is often an important contributory factor in elderly
people’s use of health services including: admission to, delayed
discharge from, or unplanned readmission to hospital; referral
to a day hospital or geriatric unit; and admission to residential
care or nursing homes.18–29 Poor health in the carer population
therefore can have important implications for service planning
in the formal health and social care sectors.
Third, an intensification of caring activities is likely to
increase demands from carers for recognition and support.
Under the Carers Act 1995, local social services authorities
must, when asked, assess the needs of carers who provide a
‘substantial amount of care on a regular basis’.30 The Carers and
Disabled Children Act 2000 strengthened carers’ rights to
assessment and service support, and practitioners are now
required to consider the sustainability of the caring role.31
Research shows that those devoting more than 20 h a week to
their caring activities are most likely to be providing personal
and physical assistance to someone who lives in the same
household with no help from other people.32 This threshold has
assumed considerable importance in assessing carers’ support
needs and identifying those who are most at risk.30,33 An
increasing number of heavily involved carers would require additional
resources to assess their needs and provide appropriate support,
including services for carers to take a break from caregiving.
This paper does not address these issues directly but rather
prepares the ground by examining trends in carers’ mental
health over a recent 10 year period. More specifically, it aims to
assess whether differences in rates of psychological distress
between carers and non-carers have changed over time.
The analysis is based on data drawn from the British Household
Panel Survey (BHPS). The BHPS is an annual survey of a
nationally representative sample of more than 5000 private
households in England, Scotland and Wales, yielding almost
10 000 adult interviews each year.34 The panel was recruited
in 1991 when information was gathered on all those living in
private households at addresses selected according to a
twostage clustered probability design and systematic sampling.
The sample for subsequent waves includes all adults
enumerated at wave one plus their natural descendants on turning age
16. Other adults in their current household are also interviewed.
Because the sample is augmented in this way, it remains broadly
representative of the general population throughout the 1990s.
Each wave can be treated as a cross-sectional survey to
investigate time trends and this report is based on the first 10 waves of
the BHPS covering 1991–2000.
Respondents over 16 years are asked whether they provide care
for someone who is sick, elderly or disabled. Caregiving is
defined as looking after, giving special help or some regular
service that is not provided in the course of paid employment.
This definition includes carers looking after clients of voluntary
organizations but these carers are excluded here because what
motivates them to care, and the choices available to them, are
distinct from those of family carers. Care provided by children
and young people is not recorded in the BHPS.
Carers are distinguished according the locus of care and the
amount of time spent on caring activities. The term ‘co-resident’
describes those who provide care inside their own household;
‘extra-resident’ denotes caring for someone living in a different
household or a communal establishment. Individuals who
provide care in both spheres are counted as co-resident carers. For
reasons given above, the analysis also distinguishes heavily
involved carers: those providing at least 20 h of care a week.
Mental or emotional distress was assessed by the General
Health Questionnaire (GHQ), a widely used measure of
subjective well-being with demonstrable validity and reliability.35 It
asks respondents about their recent experience of symptoms
known to be indicative of anxiety and depression, social
dysfunction, loss of confidence and self-esteem. Because the GHQ
covers a wide range of symptoms, it is considered more
appropriate for measuring the mental health of carers than
instruments for detecting depression alone.36
The 12-item version of the GHQ was used to count the
number of symptoms of distress. The symptom scale is often
used for identifying adults with common mental health
problems and estimating the prevalence of psychiatric illness. It
ranges from zero to 12 and validity studies indicate that
presenting four or more symptoms is associated with an 80 per cent
probability of a formal psychiatric diagnosis.37 This threshold
is used here to investigate differences between carers and
noncarers in the proportion presenting high distress scores. Pevalin
found no evidence of retest effects across seven waves of the
BHPS and concluded that the GHQ12 is a reliable instrument
for measuring psychological distress in population-based
studies with a 1 year interval between applications.38
The GHQ12 can also be scored to produce a severity scale of
psychological distress (range 0–36). Results based on this scale
produced virtually identical conclusions to those based on the
symptom scale and are not presented here.
Differences between carers and non-carers in the proportions
with high GHQ scores were assessed by analysis of variance.
Potential confounding variables were selected a priori because
of their probable associations with both psychological distress
and caregiving (see Appendix). When age, marital status and
other socio-demographic factors are taken into account,
differences between the proportions of carers and non-carers with
high distress scores can be interpreted as caring-related
inequalities. Interaction terms were included to investigate changes in
the extent of inequalities over time, and trends were smoothed
to take account of year-on-year fluctuations as a result of
sampling variations. The analyses were conducted separately
for men and women because their experiences of providing care
differ widely, and gender inequalities in psychological health are
marked.39,40 Sample numbers are given in the Appendix.
Table 1 shows the proportion of non-carers who present more
than three GHQ symptoms and the differences in proportions
between carers and non-carers after adjusting for potential
confounders. Most carers do not present high distress scores;
however, carers present higher rates of distress than non-carers.
As the definition of caregiving focuses on co-resident carers, and
those devoting at least 20 h a week to their caring activities, the
health gap widens.
Distress rates are higher in women than in men, reflecting
the female excess of psychological symptoms across the life
course;40 however, inequalities associated with caregiving are
greater for women than men. Across the study period, the
difference in women’s distress rates between non-carers and those
providing 20 h or more care per week is twice that of their male
counterparts: over 12 and no more than six percentage points,
respectively. Men who are heavily involved in their caring
activities present similar distress rates to those of women who are
reportedly not providing care (around 23 per cent on average).
Between 1991 and 2000, differences in rates of distress
between carers and non-carers fluctuate within a narrow range,
and the interaction terms shown in Table 2 indicate that there is
no significant widening or narrowing of inequalities over time.
There is no support for the hypothesis that differences in levels
of distress associated with caregiving increased during the
1990s. Equally, caring-related inequalities did not diminish:
differences in rates of distress, especially between women who do
and do not provide care, persist throughout the study period.
There is a small but significant increase in women’s distress
rates, amounting to around one percentage point every 3 or 4
years (Table 2). This trend is found irrespective of their
involvement in caregiving, and differences in distress levels between
women with and without caring responsibilities are more or less
constant over time. Consequently, the rise in rates of distress for
women providing care cannot be attributed solely to the
intensification of their caring activities.
Closer inspection of Table 1 indicates that men who provide
care present higher rates of distress over time relative to
noncarers, and the unadjusted interaction term in Table 2 reaches
borderline significance (p = 0.09). This widening health gap is
driven in part by a slight decline in non-carers’ distress rates
so the increase in carers’ rates is somewhat less than implied.
Following adjustment for age and other confounders, the
observed increase in distress associated with men’s caring
activities is halved and not statistically significant (Table 2).
This paper describes recent trends in psychological distress
associated with the provision of unpaid care. The expectation
Non-carers All carers Co-resident carers† 20 h or more
Non-carers All carers Co-resident carers† 20 h or more
*Adjusted for potential confounders and sampling fluctuations over time.
†Co-resident includes those providing both extra-resident and co-resident care.
Table 2 Mean differences in the proportion of carers reporting more than three GHQ
symptoms, relative to non-carers, by carer status, locus of care, hours caring per week
Interaction term: carer status by year
All carers –0.06
Co-resident carers† –0.11
20 h or more –0.43
Unadjusted Adjusted Unadjusted Adjusted
†Co-resident includes those providing both extra-resident and co-resident care.
was that the gap in rates of distress between carers and
noncarers would widen over time, in line with the observed
intensification of caring activities.
Carers present higher rates of distress than non-carers and
the differences are greater where carers look after someone
inside their own household, or devote more than 20 h a week to
their caring activities. Rates of distress are also higher for
women with caring responsibilities than for their male
counterparts. Gender differences might be expected because rates of
distress in the general population are invariably higher for
women than men. However, inequalities in distress between
those with and without caring responsibilities are greater for
women than for men, drawing attention to gender differences in
the experience of carer burden.41,42
Inequalities in rates of distress between carers and
noncarers persisted across the study period. Differences in rates of
distress associated with caregiving had not increased; equally,
the health gap between carers and non-carers had not
diminished by the end of the 1990s. Several processes may account for
the lack of any observable impact of caregiving intensification
on inequalities in reported distress:
The first explanation touches on the definition and
measurement of unpaid care. People who are closely involved at an
emotional level with the person they look after, a spouse, partner or
child especially, might regard caring as part of their normal
everyday activities or simply fulfilling family obligations.43 If so,
they might be less inclined to adopt the ‘carer’ label, especially
where they are coping successfully with their caring
responsibilities. However, the establishment of carers’ rights and the
development of services and benefits have given priority to
heavily involved carers, as have carers’ organizations at both
national and local levels, and the importance of carers is now
argued on moral, social and economic grounds.2 Consequently,
the growing recognition of carers as a distinctive group of
people with particular needs may have encouraged those who
do not present symptoms of distress to identify themselves in
household surveys. If this has happened, any tendency towards
widening inequalities in rates of distress between carers and
non-carers would have been contained or reversed.
The second argument recognizes that widening inequalities
may require a substantial increase in the number of carers at risk
of psychological distress, a sustained increase in the risk of
caring-related distress, or both. Although the number of heavily
involved carers has increased,6,7,9 they still form a minority of
the carer population: in 2000, no more than a third of carers
looked after someone inside their own household, and one in
four provided 20 h or more care per week.1 There is no firm
evidence from this study that the risk of psychological distress in
these carer sub-groups increased over time. Moreover, Pickard
found that the number of adult children providing heavy care to
elderly parents in the same household declined in the 10 years to
1995.7 Taken together, these trends indicate that the
intensification of caregiving might have been insufficient to have a
detectable impact on inequalities in distress rates at the
The third line of reasoning argues that increased recognition
and support for carers has prevented or alleviated the adverse
health effects of caregiving. During the 1990s, particular
attention focused on developing carer support in doctors’ surgeries
and the potential benefits for carers of closer collaboration
between health and social services, and carers’ organizations.
However, the impact of such developments has been limited and
often short term, and questions remain about their
effectiveness, the adequacy of the resources available, and the targeting
of heavily involved carers.44–46
Implementation of the 1995 Carers Act, which gave carers’
the right to an assessment of their support needs, has also been
patchy, and positive outcomes for carers are difficult to detect.47
Local support services that might help carers maintain their
own health and well-being are under-resourced and
underdeveloped; heavily involved carers were no more likely to take
a break from caring in 1995 than in 1985.48 Grants for local
authorities to develop services for giving carers a break from
caring, and other initiatives launched as part of the Carers
Strategy in 1999,2 would have occurred too late in the study
period to have any discernible impact at the national level.
None the less, existing care services might have protected
carers’ health by targeting disabled and elderly people in
greatest need of intensive support at home.49,50 Between 1992 and
2000, the number of home help or home care contact hours
purchased or provided by English local authorities increased by
65 per cent, and the intensity of domiciliary care provision
doubled from 3.2 h to 7.0 h per household per week.51 Whether such
provision cushioned the impact of more intensive care demands
on unpaid carers is debatable, however. Formal service
providers rarely support heavily involved carers who are close
relatives of the person they care for, or where they share the same
household.52 Indeed, the number of people receiving home care
fell during the 1990s;51 fewer than one in four people whose
carer lived in the same household received any formal service
support in 2000, a proportion that has declined since 1985.53,54
The impact of cohort effects on health gains might be
expected to feed through fairly quickly because of rapid
turnover in the carer population.10 Improvements in the
psychological health and coping strategies of successive cohorts of
carers would reduce caring-related inequalities if their impact
were disproportionate to that of comparable gains in the general
population. However, there was no evidence of such an effect.
Trends in the psychological health of carers essentially parallel
those of non-carers, pointing to some common underlying
factor, or to different factors producing comparable outcomes
in both groups.
The national strategy for carers emphasizes the importance
of promoting their health and well-being.2 Recent trends
demonstrate a continuing need to maintain the emotional and
mental health of carers, especially those women with heavy
caring responsibilities; the evidence for doing so is as compelling
as it ever was. Although the links between caregiving and
psychological distress are imperfectly understood, caring-related
inequalities in anxiety and depression are, in principle,
avoidable and amenable to policy interventions. The challenge is to
develop appropriate, co-ordinated responses from community
health and social care services.55 Towards that end, the findings
provide a national baseline against which to monitor the impact
of prevention strategies and health promotion aimed at
maintaining carers’ health and well-being.
The research was funded by the Department of Health as part of
its Inequalities in Health Research Initiative. I am grateful to
members of the research advisory group for reading an earlier
draft of this paper and offering valuable comments. Data from
the British Household Panel Survey were made available
through The Data Archive in accordance with current ethical
guidelines and data protection regulations. The data were
originally collected by the ESRC Research Centre on
MicroSocial Change at the University of Essex. Neither the original
collectors of the data nor the Archive bear any responsibility for
the analyses or interpretations reported here. The views
expressed are those of the author and are not necessarily shared
by any individual, government department or agency.
Accepted on 19 June 2003
Ethnicity Marital status
Table A1 Potential confounding variables
Highest academic qualification
Most recent Registrar-General’s social class
Number of physical health problems
Number of dependent children
Number of adults in household
Age of youngest child
Number of consumer durables
Car available to use
Range: 15–98 years (linear and quadratic terms)
Single, never married
Working full time (30 h or more a week)
Working part time (less than 30 h a week)
Range: 0–3 or more
Range: 1–4 or more
Just about getting by
Finding it quite/very difficult
Range: 0–4 or more (from a list of 12 medical problems and impairments affecting limbs,
sight, breathing, heart, etc.)
Range: 0–7 (colour TV, video, CD player, home computer, washing machine, dishwasher,
Non-carers All carers Co-resident carers 20 h or more
Non-carers All carers Co-resident carers 20 h or more
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