EFFECTS ON CARE-GIVERS OF SPECIAL

DAY CARE PROGRAMMES FOR

DEMENTIA SUFFERERS
Y .D. Wells, A.F. Jorm. F. Jordan and R. Lefroy

Two groups of care-givers to dementia sufferers were interviewed to assess

their psychological symptoms and the behaviour problems of the dementia
sufferers. The first group were using special dementia day care while the
second group were about to begin using it. The second group were re-inter-
viewed three months later. Therefore two comparisons could be made; a
with/without day care comparison and a before/after admission to day care
comparison. Care-givers had a high level of psychological symptoms which
were not significantly reduced by using day care. Full-time institutional care
did reduce distress. Day centre clients continued to deteriorate as would be
expected with a degenerative condition. While special dementia day care
centres appear to play a useful role for many care-givers, they may provide too
few hours relief per week to markedly reduce the care-givers’ psychological
symptoms. Family care-givers currently take the major role in caring for
dementia sufferers in the community and the burden of care needs to be shared
more equitably.

Australian and New Zealand Journal of Psychiatry 1990;24:82-90

Dementia sufferers are major users of institutional
care facilities such as nursing homes. It has been
estimated that, in Australia, around half of moderate-
to-severe cases live in institutions [ 11. The ageing of
Moorfields Community for Adult Care
Y.D. Wells, BA
NH&MRC Social Psychiatry Research Unit, The Australian
National University
A.F. Jorm, PhD
Department of Social Work, Princess Alexandra Hospital
F. Jordan, Dip. Social Work
Human Ageing Research Unit, The University of Western
Australia
R. Lefroy, FRACP
Correspond with DrJorm,NH&MRC SocialPsychiatry Research
Unit. The Australian National University, GPO Box 4, Canberra
ACT 260 I
the Australian population is expected to produce a
substantial increase in the prevalence of dementia
which will bring about a corresponding rise in demand
for dementia services [ 2 ] .If the level of nursing home
bed provision were allowed to rise in step with the
prevalence of dementia, there would be an enormous
financial burden on governments for dementia care.
However, there has been a shift in policy towards
emphasizing community care services and cheaper
forms of residential care (hostels) at the expense of
nursing homes [3]. While the financial sense of this
policy change cannot be doubted, little is known about
the possible benefits or disadvantages to dementia
sufferers and their families.
In seeking to reduce the demand for institutional
care, we must ask why dementia sufferers are so often
found in such care. Because dementia involves major
cognitive impairment, sufferers are usually unable to

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 Y .D. WELLS, A.F. JORM, F. JORDAN, R. LEFROY
live in the community without constant support from
others. This support is generally provided by a close
relative who acts as the primary care-giver. Primary
care-givers often experience great distress as a result
of their care-giving role, and several studies have
shown that the state of the care-giver is a more impor-
tant determinant of institutionalization than charac-
teristics of the dementing person [4]. Furthermore,
institutional care appears to be an effective treatment
for care-giver distress. In a longitudinal study of care-
givers in Britain, Levin et al. [5] found that their
mental health tended to improve when the dementia
sufferer went into institutional care, while the mental
health of care-givers who continued on tended to get
worse. More direct evidence of the potential benefits
of institutional care to care-givers comes from a con-
trolled evaluation of an Australian special nursing
home unit for dementia sufferers [6]. Immediate entry
to this Unit produced a large reduction in the
psychological symptoms of care-givers, whereas
symptoms remained high for care-givers of dementia
sufferers placed on a waiting list for entry to the Unit.
If community care programmes are to be an effec-
tive substitute for institutional care, they should pro-
vide equivalent benefits to care-givers. Several types
of community care programmes have been targetted
specifically at dementia sufferers, including carer sup-
port groups, community options programmes, respite
care and day care. There is a need to establish whether
each of these aid the psychological health of care-
givers and, if they do not, to reconsider or redesign
these programmes accordingly. The present paper
reports on the benefits to care-givers of one of these
community care programmes: special dementia day
care. In such programmes, dementia sufferers come to
day centres one or more days a week and are provided
with activities which are suited to their cognitive
limitations. Special day care programmes of this sort
have proliferated in Australia in the past few years.
Although the effect of day care on care-givers has
not previously been evaluated, there is some evidence
on day hospitals. Gilleard [7], in Britain, found that the
psychological distress of many care-givers was
reduced when the dementia sufferer attended a
psychogeriatric day hospital. However, for others
whose distress was not alleviated, subsequent admis-
sion to institutional care did produce a reduction.
Unfortunately, the simple before/after comparison of
care-givers used by Gilleard may have exaggerated the
degree of benefit received from day hospital care.
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83
Scores on psychological symptom inventories often
go down on re-testing, even in general population
surveys where no average change should take place
[8]. Furthermore, there may be demand characteristics
in a before/after evaluation of services, such that care-
givers feel that their psychological symptoms should
improve. Although the degree of improvement seen in
Gilleard’s care-givers was probably too great to be
explained entirely in terms of such artefacts, efforts
need to be made to estimate effects of this sort.
T h e best way of o v e r c o m i n g the a b o v e
methodological limitations is to use a control group,
but in practice this can be difficult to do in studies
evaluating services. In the present study of day care,
we attempted to circumvent these problems by carry-
ing out two complementary comparisons. The first
was a simple comparison of care-givers before entry
to day care and three months after entry. We call this
the “before/after comparison”. This is essentially the
design used by Gilleard [7]. The second involved
comparing clients already receiving day care with
those about to receive it. We call this the “with/without
comparison”. If day care is effective in relieving care-
giver distress, then care-givers of dementia sufferers
already receiving it should have fewer psychological
symptoms than care-givers of those about to receive
it. In this comparison, all care-givers were being as-
sessed for the first time, so re-test artefacts were not
an issue and demand characteristics may have been
reduced. This comparison was not perfect, however,
and assumed that the type of clients entering day care
did not change over time.
Procedure
The staff of 16 special dementia day centres agreed
to assist in the study. Ten of these day centres were in
Melbourne, four in Brisbane, one on the Gold Coast
and one in Perth. Each of these day centres provided
contacts with care-givers whose relative was already
attending the centre, and also with care-givers who
were about to make use of the service. This second
group was approached for another interview three
months later. Each care-giver gave verbal or written
consent to be interviewed. The care-givers of those
about to attend constituted a consecutive series, apart
from a small number who refused to participate.
Altogether, 219 care-givers were interviewed; 155
 84 EFFECTS ON CARE-GIVERS OF SPECIAL DAY CARE PROGRAMMES
were currently using special day care, and 64 were
about to make use of it. Of the latter, 52 could be
re-interviewed three months later and 37 were still
using day care. Sample sizes for some analyses
reported below are, however, slightly smaller due to
missing data.
Thirty-nine percent of the care-givers were wives of
the day centre clients, 20% were husbands, 29% were
daughters, 4% were daughters-in-law, 3% were sons
and 5% were other relatives or friends. Through over-
sight, the age of care-givers was not recorded. How-
ever, research on the Australian general population has
shown that age explains very little of the variance in
psychological symptoms [8].
Some of the care-givers received no services apart
from the day centre: 20% of the Victorian, 25% of the
Queensland sample and 43% of the Western
Australian sample. Of the total sample, 9% used other
day placement, 28%used respite care, 8% used a sitter
service, 11% used meals-on-wheels, 26% used home
help, 37% used district nurses, and 22% used a support
group. Three percent of the care-receivers were actual-
ly in long-term residential care.
All of the day centre clients had some degree of
cognitive impairment, and in most cases this was due
to dementia. The average age of the clients was 76
years, with a range from 35 to 96 years. Males com-
prised 44.5% of the client group.
The day centres varied in their hours of opening,
from 5 to 8.5 hours per day, and in the number of days
on which they operated, from one to five days per
week. Most had one or more paid staff on duty at any
one time, but one centre had no paid staff, and one had
five paid staff. Most of the centres used volunteers.
The number of attenders ranged from 5 to 15. Some
programmes were very structured, others were very
casual and unstructured. Some provided transport to
and from the centre, others relied on the care-givers.
Most centres operated in ordinary houses, but three
used halls and two were purpose-built.
The average number of day centre hours per week
allotted to care-givers was 11.9 (SD 7.1). The averages
for individual day centres ranged from 5.0 hours per
week for three day centres up to 22.5 hours per week
for the Perth day centre. Existing clients had been
attending for an average of 10 months.
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Assessment instruments
Problem checklist
A 27-item problem checklist [9] was used. The
wording of some items was altered because these had
proved difficult to administer in a previous study (61.
The “Unable” items (to wash/to dresdto manage
stairs/to walk outside unaided) were changed to
“Needs help” (to wash/to dress, with stairs/to walk
outside). “Vulgar habits” was changed to “Bad habits,
e.g. spits, poor table manners”, “Creates personality
clashes” was changed to “Starts arguments”, “Unable
to hold a sensible conversation” was changed to
“Loses track of conversation”, and “No concern for
personal hygiene” was changed to “Resists bathing”.
In this way the problem caused by answering a nega-
tively worded question with a negative was avoided.
The more dependent and/or difficult to manage
scored highest.
General Health Questionnaire
The 30-item version [lo] was used to assess
psychological problems in the care-givers. In addition
to the conventional scoring system, the modified scor-
ing system was used to take account of chronic
problems [ 111. With both scoring systems high scores
indicate poor functioning. However, the chronic GHQ
scores were found to be highly correlated with scores
obtained in the conventional way (r=.86) and gave the
same pattern of results, so only the conventional GHQ
scores are presented here.
DSSI/sAD
This instrument [ 121 assessed symptoms of anxiety
and depression in the care-givers. High scores indicate
poor functioning.
Quality of life questionnaire
This 20-item scale [6] assessed the care-givers’
ability to engage in social and recreational pursuits.
Higher scores indicate a better quality of life. Because
this questionnaire was found to have a complex fac-
torial structure, the items were analysed individually
to find out in which specific ways the groups of care-
givers differed.
 Y.D. WELLS, A.F. JORM, F. JORDAN, R. LEFROY 85

Table 1 . Prevalence of psychological disturbances in care-givers

compared to a general population sample

Group N GHQscore DSSl DSSl

6+ anxiety depresslon
score 4 + score 4 +

Care-givers of those about to attend day care 63 69% 52% 29%

Care-givers of those about to attend day care (excluding sub-
sequent drop-outs) 37 64% 46% 27%
Care-givers of those currently attending day care 154 59% 45% 26%
General population - males 19% 16% 7%
General population - females 20% 16% 13%

Table 2 . Mean scores (and standard deviations) of dementia sufferers and their care-givers
in about-to-attend and currently-attending groups

About to About to attend Currently

attend day (excluding subsequent attending day
care dropouts) care
Dementia sufferers
(n=64) (n=37) (n=155)

Age 74.8 (10.7) 72.8 (11.9) 76.3 (8.0)

Behaviour problems 20.0 (8.1) 18.0 (7.2) 21.0 (8.2)

Caregivers

General Health Questionnaire 9.4 (6.5) 8.1 (6.0) 8.3 (7.1)

DSSl anxiety 4.2 (3.6) 3.5 (2.6) 4.1 (3.8)
DSSI depression 2.6 (3.8) 2.4 (3.6) 2.6 (3.8)
Guilt scale 4.4 (3.2) 3.9 (2.9) 5.0 (4.3)
Grief scale 10.2 (5.8) 9.6 (6.2) 10.5 (6.2)

Guilt Scale tress. It is also an expansion of an earlier scale [6].The

This nine-item scale attempted to measure the guilt
felt by care-givers specific to that role. It is an expan-
sion of a scale used by Wells and Jorm [6].The items
are listed in the Appendix. High total scores indicate
greater guilt. Coefficient alpha for the scale was .79.
Apart from the data reported by Wells & Jorm [6]no
information on its validity is available.
Grief scale
This ten-item scale attempted to measure the grief
suffered by care-givers as distinct from general dis-
items are listed in the Appendix. High total scores
indicate greater grief. Coefficient alpha for the scale
was .86. Again, no data on validity are available.
The analyses reported here involved evaluating the
significance of many effects. To avoid an excessive
rate of Type I errors, a significance level of p<O.Ol was
used. More conservative procedures, such as Bonfer-
roni, were not used because of their lack of power.

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 86 EFFECTS ON CARE-GIVERS OF SPECIAL DAY CARE PROGRAMMES

general population, but day care attendance appeared

Table 3. Prevalence of quality of life to make no difference to the high rate.
indicators in care-givers of about-to-attend Similar results emerged when mean scores on the
and currently-attending groups various outcome measures were examined. As can be
seen in Table 2, means did not differ greatly as a
function of day care attendance. The only differences
Quality of life About to About to Currently were found on the Quality of Life Questionnaire. As
indicator * attend attend attending shown in Table 3, day care attenders more often
day care (excluding day care
reported having time to themselves and shopping
subsequeni
dropouts) alone. While these differences were significant at the
p<O.Ol level when the complete about-to-attend group
was used for comparison (x2 of 12.12 and 11.91
Friends visited 63% 65% 51yo
16% 19%
respectively), they failed to reach this level of statisti-
Rows with family 18%
Visited relatives 39% 38% 37% cal significance when subsequent drop-outs were ex-
Weekend outing 22% 24% 18% cluded (x2
of 4.16 and 5.05 respectively).
Cinema or show 17% 19% 11%
Restaurant 19% 24% 19%
Paid work 25% 32% 16%
Before/after comparison
Voluntary work 17% 22% 15%
Broken sleep 77% 76% 70% Of the 52 care-givers who were assessed both before
Too little money 11% 16% 17% and after, 36 attended for at least three months. Of the
Shopping alone 55% 59% 79%
Visited doctor 42%
other 16,6 moved into residential care (nursing home
43% 51yo
Read book 48% 54% 58% or hostel) and 10 were not attending for other reasons.
Read magazine 61'lo 68% 67% Table 4 shows the mean changes from before to after
Visited relatives 45% 43% 52% for these three outcome groups. Although behaviour
Relatives visited 72% 68% 75%
Telephone chat 92% 97%
problems tended to get worse, this trend was not
91%
Worked at hobby 56% 59% 67% statistically significant. Amongst care-givers, those
Time to self 39% 46% 66% who subsequently dropped out tended to have higher
Church meeting 38% 43% 47% initial scores than those who continued, but this trend
was also not statistically significant. Overall, care-
Abbreviations of actual items
givers improved from pre-test to post-test on the
General Health Questionnaire, F( 1,47)=20.58, and on
Withhnrithout comparison DSSI Anxiety, F( 1,49)= 10.96. However, the greatest
improvement occurred in the care-givers of those who
Before comparing these two groups on psychologi- went into residential care. In the case of DSSI Anxiety,
cal symptoms, a check was made to see if they were the Groups X Testing Occasion interaction effect was
matched in terms of otherfactors. The two groups were statistically significant, F(2,49)=5.49, while this inter-
found not to differ in age or sex of the dementing action barely missed reaching the p<O.Ol level for the
person or in sex or relationship of carer. General Health Questionnaire, F(2,47)=4.82.
Consistent with much previous research, the care- With the Quality of Life Questionnaire, continued
givers in the present study had a high prevalence of attendance only improved frequency of time to self
psychological disorders, as defined by high scores on (from 46% to 73%), but this failed to reach the p<O.Ol
screening questionnaires. Table 1 shows the percent- level with a McNemar test (Binomial p=.0129).
ages of the currently-attending and about-to-attend
groups with scores of 6+ on the General Health Ques- Correlates of caregiver distress
tionnaire and 4+ on the DSSI Anxiety or Depression
scales. These cutoffs were used to allow comparison Within the group of current day care attenders,
with general population data reported by Henderson et analyses were carried out to find correlates of care-
al. [8,13]. Not only did the care-givers have a high giver distress. Table 5 shows that characteristics of the
prevalence of psychological disorders compared to the dementia sufferer, amount of day care received and
number of other services received had very small

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 Y.D. WELLS, A.F. JORM, F. JORDAN, R.LEFROY 87

Table 4 . Mean scores (and standard deviations) of dementia sufferers and their care-givers before start-
ing day care and three months after

N Pre-test Post-test at 3
Behaviour problems of dementia sufferer months

Attending at 3 months 36 17.7 (7.1) 20.3 (7.3)

In residential care at 3 months 3 24.3 (13.5) 25.3 (4.5)
Not attending for other reasons 9 21.7 (8.7) 25.0 (10.8)

General Health Questionnaire in care-giver

Attending at 3 months 35 8.3 (6.0) 5.6 (5.8)

In residential care at 3 months 5 11.2 (10.0) 0.6 (1.3)
Not attending for 10 13.6 (6.4) 12.1 (6.4)
DSSl anxiety in care-giver other reasons

Attending at 3 months 36 3.5 (2.6) 3.3 (3.0)

In residential care at 3 months 6 6.2 (6.4) 1.0 (1.5)
Not attending for other reasons 10 6.3 (4.2) 5.6 (3.1)

DSSl depression in care-giver

Attending at 3 months 36 2.4 (3.6) 1.8 (2.5)

In residential care at 3 months 6 2.5 (4.8) 0.0 (0.0)
Not attending for other reasons 10 4.5 (4.6) 4.3 (3.9)

Guilt in caregiver

Attending at 3 months 36 3.9 (3.0) 3.3 (2.8)

In residentialcare at 3 months 6 5.0 (3.3) 2.7 (2.0)
Not attending for other reasons 10 3.7 (2.2) 4.1 (3.1)

Grief in care-giver

Attending at 3 months 35 9.8 (6.2) 9.5 (5.6)

In residential care at 3 months 6 10.2 (6.3) 6.2 (3.7)
Not attending for other reasons 10 12.0 (3.5) 12.9 (4.0)

correlations with measures of distress. The only
relationship worthy of note was the tendency for
younger age in the dementia sufferer to be associated
with more care-giver grief. However, even this cor-
relation was small in magnitude. The relationship of
the care-giver to the dementia sufferer was also ex-
amined for the three biggest groups of care-givers:
wives, husbands and daughters. These results are
shown in Table 6. The only statistically significant
effect was with the Guilt scale, F(2,133)=5.42.
Daughters reported more guilt than wives (significant
using modified LSD procedure). Daughters also cared

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 88 EFFECTS ON CARE-GIVERS OF SPECIAL DAY CARE PROGRAMMES

Table 5 . Correlates of care-giver distress in group receiving day care

General Health DSSl DSSl Guilt Grief

Questionnaire anxlety depression

Characteristics of dementia sufferer

Age -0.09 -0.10 -0.13 -0.15 -0.29

Sex (O=femaie,1 =male) -0.03 0.05 0.07 -0.14 0.11
Behaviour problems 0.19 0.16 0.16 0.15 0.07

Services received

Hours/week of day care -0.02 -0.07 -0.08 -0.06 -0.09

Months of day care -0.12 -0.12 -0.11 -0.10 0.02
Number of other services -0.06 -0.04 0.01 -0.07 -0.09

Table 6. Means (and standard deviations) of care-givers on measures of distress as a function of

relationship to dementia sufferer

Relationship General Health DSSl DSSl Guilt Grief

Questionnaire anxiety depression

Wife 8.33(7.06) 4.51 (4.02) 3.08(4.46) 4.03(3.42) 11.31 (6.46)

Husband 7.52 (6.43) 3.10(3.26) 1.97(2.61) 4.67(3.98) 10.43(6.41)

Daughter 9.69(7.84) 4.71 (3.93) 2.87(3.60) 6.71 (5.20) 10.31 (5.57)

for an older group of dementia sufferers (mean age of
78.5 years) than either the husbands (72.2 years) or
wives (75.2 years).
Discussion
This study, like earlier work by Gilleard et a1 [ 141
and Levin et al. [ 5 ] , has shown that care-givers of
dementia sufferers have high levels of psychological
symptoms that are associated with the care-giving
role. Severe psychological problems were found to be
three times more common in care-givers than in the
general population, and those already receiving day
care seemed little better off than those about to receive
it.
When care-givers of new attenders were followed
over 3 months, there was some reported reduction in
distress, but this seems to be due to the re-test artefact.
It might be hoped that, if anything, day care would
provide some relief to the most distressed care-givers.
However, the initial psychological symptom scores of
those who had dropped out by 3 months tended to be
higher than the scores of those still attending. In other
words, a high level of care-giver distress was, if any-
thing, predictive of dropping out rather than successful
attendance at day care. Although day care did not
relieve the considerable psychological distress of care-
givers, there were some positive benefits. Care-givers
reported having more time to themselves and more
often going shopping on their own. Anecdotal reports
from the interviewers in the present study indicated
that care-givers were very pleased with day care and
grateful for its provision. It is, of course, possible that
day care has quite a specific effect on particular carers
looking after particular kinds of dementing patients at
particular stages of their dementia. However, the
present study was not designed to assess specific ef-
fects of this sort.

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 Y.D. WELLS, A.F. JORM, F. JORDAN, R. LEFROY
In view of the poor psychological health of many
care-givers, it is notable that receipt of other com-
munity services was not uncommon. These carers
were receiving what could be regarded, by Australian
standards, as a high level of community services.
The relationships between the level of care-giver
distress and other variables are quite small. This study
replicates the findings of others [4]in demonstrating
a small positive correlation between the level of de-
pendent and inappropriate behaviours of the clients
and the level of distress of their care-givers. Care-giver
distress was not related to the number of day centre
hours allotted to them or to the number of other ser-
vices which they received. This does not mean that
receiving more support does not help care-givers to
cope. It may be that those care-givers who are more
distressed in the first place are offered more help by
community agencies.
Different categories of care-givers appeared to dif-
fer little in the level of distress which they felt. How-
ever, daughters did seem to feel more guilty. This may
be because they had the demands of several genera-
tions of family members to cope with. They have been
called “the sandwich generation”, under pressure on
all fronts. As might be expected, daughters looked
after an older group than the other categories of care-
givers.
The effect of day care on care-givers’ psychological
state was disappointingly small. A number of reasons
can be advanced for this. Some of the distress may
have been a reaction to the diagnosis of dementia in a
relative and all that this implies. Day care could not be
expected to relieve distress of this sort. Another major
source of distress is the responsibility and time
demands of providing care. Day care would be ex-
pected to help in this area by taking a share of the
burden of caring. However, the amount of relief, in
terms of time, which day care typically provided was
rather small. In our study, the average attendance was
1 1.9 hours a week. Viewed in the context of the 168
hour week which caring for a dementia sufferer invol-
ves, the care-giver still takes responsibility for 93% of
the week. Even allowing for other community ser-
vices, like respite and district nursing, the care-giver
still takes the lion’s share of the load. If the dementia
sufferer were to move into residential care, the care-
giver’s share would of course shrink dramatically. In
other words, there is presently a considerable im-
balance in the degree of help provided to care-givers
who look after a dementia sufferer in the community
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89
compared to those who relinquish the major respon-
sibility to an institution. Perhaps the major factor
influencing the care-giver’s psychological health is
the degree to which caring is shared with others and,
in this respect, residential care easily wins over com-
munity care.
The small number of care-givers in our study who
relinquished that role before the 3-month follow-up
showed the most dramatic improvement in
psychological health. This result is consistent with an
earlier study of the effects of residential care on care-
givers [6].
The present conclusion about the ineffectiveness of
day care in relieving care-giver distress may not apply
to an expanded community care programme in which
the burden of caring is more equitably shared. If day
care is to have any hope of impact on the carer’s
psychological health, it may need to be minimally
expanded to an 8.30-5.30 Monday-Friday service so
that the carer has some chance of leading an inde-
pendent life. Although such an expansion may be seen
as expensive by the government, it is still cheap com-
pared to full-time residential care and would only be
matching the type of service commonly provided for
child care in Australia. There is a need to trial and
evaluate a considerably extended community care ser-
vice for dementia sufferers and their families, with the
aim of reducing care-giver distress and reducing the
demand for residential care.
Finally, it is interesting to note who is shouldering
the burden of community care for dementia sufferers.
In our day care study, 73% of the carers were women.
Wives made up 39%, daughters and daughters-in-law
33% and husbands 20%. Interestingly, sons made up
only 3% of carers. Most of the spouse carers would be
elderly, but this would not be so for the daughters and
daughters-in-law. As participation in the paid
workforce becomes increasingly the norm for women,
the pool of younger women available for unpaid care
may decrease and the pressure for an increased level
of community support may increase. This has been the
trend with child care in Australia. In many ways, the
term “community care” is a misnomer. The sociologist
Wilkin [IS] has pointed this out clearly with com-
munity care for the intellectually handicapped:
“...community care does not mean care by the com-
munity, nor does it mean care by the family, it means
maternal care with varying but generally low levels of
support from others”. If we substituted “care by wives
and daughters” for “maternal care”, this quotation
 90 EFFECTS ON CARE-GIVERS OF SPECIAL DAY CARE PROGRAMMES
could well summarize the current situation with com-
munity care of dementia sufferers in Australia.
Acknowledgements
We wish to thank the following for their assistance: the participat-
ing care-givers; Ann Don, Joan Cume, Mathilde Bachouse and Jan
Elliott, research assistants; Brian Moss, Director, Moorfields Com-
munity for Adult Care; A.S. Henderson, Director, NH&MRC Social
Psychiatry Research Unit; Marie Morgan and Penny Evans, for
secretarial assistance; Angelo Carlini, social worker, Sunshine
Regional Geriatric Assessment Team; Sr. Rene Thomas, “Gwen-
nap”Day Centre; Bill Best and Sr. Rosemary Houlihan, “Strathdon”
Community; Yvonne Hargrave, Doncaster and Templestowe Day
Centre: Olive Graham, “The Haven” We Care Centre: Sr. Ann
Stannus and Jackie McCormack, “Hurlingham” Day Centre: Ber-
nadette Byrne, M.E.C.W.A. Day Centre; Sr. Eunice Barter,
“Gatehouse” Day Centre; Bert Fine, “Maranoa House”, Lisa
Drayton and Trish Maggs, “Caladenia” Day Centre; Sandra Kep-
pich-Arnold, “Oswald Street Group”; Anglican Homes Incor-
porated, Perth; Joan Burn, “Bull Creek Club”, Perth; Heather
Hockings, ADARDA Centre, Gold Coast; Margaret Cooke, ADAR-
DA Centre, Gordon Park; Mark McDonald, West End Day Centre;
Andrea Taylor, “Bethesda” Day Centre; Karen Grinlaubs, Coopers
Plains Day Centre; Blue Nursing Service, Queensland Wesley
Central Mission, Brisbane.
This study was supported by a grant from the Can-
berra Office, Commonwealth Department of Com-
munity Services and Health.
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Guilt Scale
1. I feel guilty regarding my decision to seek help for my relative
2. I keep thinking I should be doing more for my relative
3. I worry about whether my relative is cared for well enough
4. I feel I may have contributed in some way to my relative’s ill-
ness
5. I am failing to live up to my own expectations as a caregiver
6. I feel bad about my lack of patience with my relative
7. It seems to me that more should be done for my relative
8. I feel bad because my relative has the illness instead of me
9. I sometimes feel guilty because I can enjoy myself
Grief Scale
1. I miss not being able to talk to my relative
2. I often daydream about how my relative used to be
3. I don’t like to think about how my relative is more than I have
to
4. I feel angry when I think about my relative
5.1 frequently feel like crying about my relative
6. I ask myself, “Why has this happened to my relative?”
7. I can’t help hoping that my relative will recover
8. I feel helpless in the face of my relative’s illness
9. I feel that grief has aged me
10. Funerals upset me
Items from both scales are rated as: Not at all, A little, A lot or Al-
most unbearably