Systematic review of information and support interventions for caregivers of people with dementia

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DOI: 10.1186/1471-2318-7-18 · Source: PubMed
Abstract
Dementia is an important health and social care problem and is one of the main causes of disability in later life. The number of families affected by dementia will dramatically increase over the next five decades. Despite the implications for health and social care services in the future, the overwhelming majority of care for people with dementia takes place away from health care settings. Providing informal care for someone with dementia can be psychologically, physically and financially expensive and a range of health service interventions aimed at supporting and providing information to these carers has developed to help carers meet these demands. This review examines whether information and support interventions improve the quality of life of people caring for someone with dementia. A systematic review examining evidence from randomised controlled trials in which technology, individualised or group-based interventions built around the provision of support and/or information were evaluated. Forty-four studies were included in the review. Controlling for the quality of the evidence, we found statistically significant evidence that group-based supportive interventions impact positively on psychological morbidity. However, whilst the improvement was unlikely to be due to chance, the clinical significance of this finding should be interpreted tentatively, due to the difficulties in interpreting the standardised mean difference as a measure of effect and the complex aetiology of depression. No evidence was found for the effectiveness of any other form of intervention on a range of physical and psychological health outcomes. There is little evidence that interventions aimed at supporting and/or providing information to carers of people with dementia are uniformly effective. There is a pressing need to ensure that supportive interventions at the development stage are accompanied by good quality randomised evaluations in which outcomes that are important to clinicians and carers are measured.

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BMC Geriatrics
Open Access
Research article
Systematic review of information and support interventions for
caregivers of people with dementia
Carl A Thompson
†1
, Karen Spilsbury
†1
, Jill Hall
†1
, Yvonne Birks
†1
,
Colin Barnes*
2
and Joy Adamson
†1
Address:
1
Department of Health Sciences, University of York, York, UK and
2
Speech and Language Therapy Department, St James Hospital,
Portsmouth, UK
Email: Carl A Thompson - cat4@york.ac.uk; Karen Spilsbury - ks25@york.ac.uk; Jill Hall - jh545@york.ac.uk; Yvonne Birks - yfb1@york.ac.uk;
Colin Barnes* - colin.barnes@york.ac.uk; Joy Adamson - ja14@york.ac.uk
* Corresponding author †Equal contributors
Abstract
Background: Dementia is an important health and social care problem and is one of the main
causes of disability in later life. The number of families affected by dementia will dramatically
increase over the next five decades. Despite the implications for health and social care services in
the future, the overwhelming majority of care for people with dementia takes place away from
health care settings. Providing informal care for someone with dementia can be psychologically,
physically and financially expensive and a range of health service interventions aimed at supporting
and providing information to these carers has developed to help carers meet these demands. This
review examines whether information and support interventions improve the quality of life of
people caring for someone with dementia.
Methods: A systematic review examining evidence from randomised controlled trials in which
technology, individualised or group-based interventions built around the provision of support and/
or information were evaluated.
Results: Forty-four studies were included in the review. Controlling for the quality of the
evidence, we found statistically significant evidence that group-based supportive interventions
impact positively on psychological morbidity. However, whilst the improvement was unlikely to be
due to chance, the clinical significance of this finding should be interpreted tentatively, due to the
difficulties in interpreting the standardised mean difference as a measure of effect and the complex
aetiology of depression. No evidence was found for the effectiveness of any other form of
intervention on a range of physical and psychological health outcomes.
Conclusion: There is little evidence that interventions aimed at supporting and/or providing
information to carers of people with dementia are uniformly effective. There is a pressing need to
ensure that supportive interventions at the development stage are accompanied by good quality
randomised evaluations in which outcomes that are important to clinicians and carers are
measured.
Published: 27 July 2007
BMC Geriatrics 2007, 7:18 doi:10.1186/1471-2318-7-18
Received: 9 March 2007
Accepted: 27 July 2007
This article is available from: http://www.biomedcentral.com/1471-2318/7/18
© 2007 Thompson et al; licensee BioMed Central Ltd.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0
),
which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
BMC Geriatrics 2007, 7:18 http://www.biomedcentral.com/1471-2318/7/18
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Background
There are an estimated 7.4 million people living with
dementia worldwide and at least 3.7 million with Alzhe-
imer's disease (AD) [1,2]. In the UK dementia affects 1.1%
of the population (683,597 people) [3]. The annual total
cost of care for people with late onset dementia in the UK
for 2005/6 is estimated to be over 17 billion: this
equates to 25,472 per person [3]. In the US, estimated
annual costs are $8,064 for formal services and $23,436
for informal care [4]. Informal caregiving constitutes a sig-
nificant proportion of the care provided to people with
dementia. Informal caregivers can be defined as those
individuals who provide extraordinary, uncompensated
care, predominantly in the home. The role, carried out pri-
marily by family members, involves committing signifi-
cant amounts of time and energy over months or years,
and requires the performance of tasks that may be physi-
cally, emotionally, socially, and financially demanding
[5]. There are at least 6 million informal caregivers in the
UK [6] and an estimated 22 million in the US [7]. Caring
for a family member with dementia is stressful and bur-
densome, and caregivers' physical and emotional health
often suffers as a result [8]. Carer burden is associated with
several factors including the relationship to the care recip-
ient, gender, age, ethnicity and care recipient behavioural
problems [9]. It is likely then that no single supportive
intervention "fits all" caregivers.
A variety of interventions have been developed which aim
to offer support for caregivers. Interventions include:
training and education programmes, information-tech-
nology based support including specialized computer and
telephone networks, and formal approaches to planning
care which take into account the specific needs of caregiv-
ers and people with dementia sometimes using specially
designated nurses or other members of the healthcare
team. Existing reviews of interventions have tended to
focus either on a particular intervention type, for example
psychosocial interventions [10,11], or particular out-
comes, such as carer burden [12,13]. This systematic
review aims to assess the effectiveness of interventions
based around information and support provision for
informal caregivers of people with dementia in commu-
nity settings. It is worth noting that our focus was on
health service interventions rather than the professional
group responsible for the intervention delivery. Conse-
quently, whilst the majority of interventions are profes-
sionally delivered other non health care professionals
may also be involved.
Methods
Inclusion criteria
Studies were selected for inclusion if they met pre-speci-
fied criteria (Table 1).
Search Strategy
Trials were identified from a search of the Specialized Reg-
ister of the Cochrane Dementia and Cognitive Improve-
ment Group during November 2003 and October 2005
using the terms: computer*, telephon*, training*, edua-
tion*, information, "care-planning", carer*, caregiv*.
Databases included in the Specialized Register at that time
are detailed in Table 2. No language restrictions were
imposed. Citation searches for key papers, reference
checking and contact with authors to obtain further
details (where necessary) were all undertaken. Thus, our
search strategy was iterative and multi-stage involving
computerised, hand and personal contact searching.
Study selection and data extraction
A single author discarded publications deemed irrelevant
on the basis of title and/or abstract. From the refined list
of citations, at least two authors independently selected
the trials for inclusion if they met the necessary quality cri-
teria. Any disagreements were resolved with a third party.
Summary statistics for each trial and each outcome were
collected. For continuous data these were mean change
from baseline, standard error of mean change, and
number of patients for each treatment group at each
assessment. Where changes from baseline were not
reported, the mean, standard deviation and the number of
people in each treatment arm at each time point were
extracted (if available). For binary data, the numbers in
each treatment group and numbers experiencing the out-
come of interest were sought. To allow an intention-to-
treat (ITT) analysis, the data was sought irrespective of
compliance, whether or not the person was subsequently
deemed ineligible, or otherwise excluded from treatment
or follow-up. If ITT data were not available in the publica-
tions, 'on-treatment' or the data of those who completed
Table 1: Inclusion criteria
Study design: randomised controlled trials.
Study participants: principal informal caregiver (not a paid professional) and care recipient (diagnosed with dementia) dyad living in the
community.
Intervention: information and/or support intervention.
Outcomes: caregiver outcomes: quality of life, physical and mental health, burden or satisfaction; and patient outcomes: such as activities of
daily living or behaviours; health service utilization: such as numbers of in-patient, outpatient or primary health care contacts;
economic outcomes: such as time spent on caring activities.
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the trial were sought and indicated as such. In studies
where a cross-over design was used, only data from the
first treatment phase after randomisation were eligible for
inclusion.
Quality assessment
Each of the authors assessed the studies according to
agreed criteria [14,15] and included the adequacy of the
randomisation process in each trial (Table 3). Because
allocation systems have the potential to increase bias in
studies [16] only those studies that were adequate or
unclear were included in the review. Other elements of
study quality noted, but not scored, were: 'blinding' of
participants and outcome raters; level of caregiver drop-
out at study follow-up stage; follow-up analysis of people
leaving the study and; equal treatment of both interven-
tion and control participants in all respects other than the
delivery of the supportive intervention.
Data synthesis
Data for each trial were entered into MS Excel spread-
sheets and analysed using Revman version 4.2.8. Trials of
supportive interventions often measure outcomes using
ordinal rating scales. Where the rating scales used in the
trials had more than seven categories the data were treated
as continuous outcomes and normally distributed.
Many studies failed to report change from baseline or only
reported post-intervention means, number of patients
and standard deviations. Consequently, we assumed
(given satisfactory randomisation) that control and exper-
imental trial arms were comparable at baseline and com-
pared post intervention means or event rates for those
studies with sufficiently homegenous interventions.
For the meta-analysis of results of trials we used the
weighted mean difference (WMD) when the pooled trials
used the same rating scale or test, and the standardised
mean difference (SMD) when they used different rating
scales or tests. The duration of the trials varied considera-
bly but did not necessitate dividing the meta analysis into
smaller time periods with separate meta-analyses for each
period. For binary outcomes, such as improvement or no
improvement, the odds ratio (OR) was used to measure
treatment effect.
In all cases the overall estimate from a fixed-effects model
was presented except in cases where there was evidence of
substantial heterogeneity between trials in which case a
random-effects model was used [17]. I
2
statistic was
Table 3: Adequacy of the randomisation process
1) Adequate
i) a central allocation process by an office or third party unaware of subject characteristics
ii) pre-numbered packages of support administered to carers sequentially
iii) use of an on-site or coded computer system with a locked, unreadable file with allocation occurring only after carers or patient details are
inputted
iv) assignment via scaled, numbered and opaque envelopes
v) other combinations which provide evidence of adequacy in concealment
2) Unclear
i) study used list or tables to allocate assignments
ii) use of "envelopes" or" sealed envelopes
iii) simply stating that the study was randomised with no further details
3) Inadequate
i) by using case numbers, dates of birth, age group, alternation or date of referral and other similar methods
ii) use of any other system in which allocation can be known in advance such as pre-printed lists of random numbers or open computer allocation
lists.
Table 2: Databases searched
Cochrane Central Register of Controlled Trial
Current Controlled trials
ClinicalTrials.gov
MEDLINE
EMBASE
PsycINFO
CINAHL (Cumulative Index to Nursing and Allied Health Literature)
SIGLE (Grey Literature in Europe)
ISTP (Index to Scientific and Technical Proceedings)
INSIDE (BL database of Conference Proceedings and Journals)
Aslib Index to Theses (UK and Ireland theses)
Dissertation Abstract (USA)
ADEAR (Alzheimer's Disease Clinical Trials Database)
Alzheimer Society
South Australian Network for Research on Ageing
US Dept of Veterans Affairs Cooperative Studies
National Institutes of Health (NIH)
GlaxoSmithKline
Schering Health Care Ltd
Hong Kong Health Services Research Fund
Medical Research Council (MRC)
National Research Register
NHS R&D Health Technology Assessment Programme
LILACS:Latin American and Carribbean Health Science Literature
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employed to assess the impact of heterogeneity on the
meta-analyses; a result of 50% or greater was regarded as
substantial [18]. Regardless of statistical heterogeneity
meta analysis was only undertaken when the interven-
tions were sufficiently similar in focus and process to
allow pooling.
Results
A total of 141 relevant titles and abstracts were provided
to authors following the database search by the Editorial
Group of the Cochrane Dementia and Cognitive Improve-
ment Group. Following screening, 44 papers (Appendix
1) were included in the final review [A1–A44] and 4 clas-
sified as 'pending assessment' (no published results or
ongoing) [19-22].
Interventions were classified as technology-based (n = 4),
individual (n = 27) or group-based (n = 13). However,
within each of these classifications the range of interven-
tions varied considerably and were sometimes not mutu-
ally exclusive, for example some trials comprised both
group and individual aspects. Pragmatic decisions were
made where necessary regarding classification for the pur-
poses of describing studies. However, for the meta-analy-
sis, group intervention was compared to control and
individual intervention compared to control, and com-
bined group plus individual interventions were classified
according to the predominant component of the interven-
tion [see additional file 1].
Technology-based interventions
Four studies were classified as technology based interven-
tions. Goodman [A17] reported that the intervention led
to significant improvement on outcomes of information,
perceived social support and support satisfaction whereas
Mahoney [A23] found no effect for the intervention on
any of the assessed outcomes. Various subgroup analyses
by trialists were undertaken, reporting significant benefits
for the intervention [A1, A8, A23]. Effect estimate on out-
come of depression for 3 trials (229 participants) [A1, A8,
A23] using computer interventions was 0.62, however this
did not reach statistical significance (95% CI -1.98 to
3.22) (Figure 1).
Group-based interventions
Thirteen of the included studies were classified as group
based interventions. Eight trials found significant benefits
for the interventions compared to controls on some of the
outcomes [A6, A9, A11, A19, A20, A24, A26, A38]. Five
trials reported no differences between groups on any
assessed outcomes [A13, A18, A25, A32, A43].
Meta-analysis of 5 studies (292 participants) [A6, A13,
A24, A32, A38] of psychoeducational interventions for
caregiver depression estimated a statistically significant
effect in favour of the intervention (-0.71, 95% CI -0.95 to
-0.46) (Figure 2). Three studies (231 participants) [A13,
A20, A32] of psychoeducational intervention assessed
burden. There were no significant differences between the
groups (effect estimate -2.15, 95% CI -5.97 to 1.66) (Fig-
ure 3). Meta-analysis of 2 studies of support interventions
(119 participants) [A19, A43] revealed no significant dif-
ferences in carer burden between the intervention and
control groups (effect estimate -0.40, (95% CI -5.69 to
4.90) (Figure 4).
Individual-based interventions
Twenty seven studies were classified as individual-based
interventions. Ten trials found no difference between the
groups in the main analysis of the assessed outcomes [A5,
A12, A14, A29, A30, A33, A35, A36, A41, A44]. Twelve
reported a significant effect for the intervention on some
of the assessed outcomes [A3, A4, A7, A15, A16, A21, A22,
A28, A31, A34, A39, A40] and one trial reported a signifi-
cant effect in favour of the control group [A42]. Four stud-
ies reported results based on subgroup analyses [A2, A10,
A27, A37].
Meta-analysis of individual psychoeducational interven-
tions was possible for outcomes of depression (7 trials;
297 participants) [A3, A4, A22, A29, A34, A38, A42] and
self-efficacy (2 trials; 190 participants) [A14, A38]. For
Technology-based computer interventions and depressionFigure 1
Technology-based computer interventions and depression.
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depression, the estimate of effect was -0.21 in favour of
the intervention (95% CI -0.61 to 0.20) (Figure 5) and for
self-efficacy 0.37 in favour of the control group (95% CI -
0.28 to 1.02) (Figure 6) but neither estimate reached sta-
tistical significance.
Methodological quality of included studies
The overall quality of included studies was poor. All the
included studies were reported as being randomised,
however for the majority of studies (n = 41) the method
of randomisation was unclear (Category 2) and conceal-
ment of allocation was rare. The sample size calculations
were poorly reported, with only two of the included trials
citing an adequate a priori power calculation [A2, A24].
Over one third of the trials (n = 14) were stated as non-
blinded which is perhaps not unusual given the nature of
the interventions. However, over 40% did not provide any
information on whether blinding (of the participants, the
investigators or the outcome assessors) was employed.
Only one trial [A37] was conducted in a double-blind
manner where the investigators and subjects were blind to
the group allocation. Twelve trials [A3, A6, A7, A18, A19,
A20, A23, A24, A26, A34, A39, A40] stated that the out-
come assessors were blind and one further trial noted that
the participants were blind to group allocation [A12].
Most of the included studies reported attrition although
this was not always done by group allocation, rather just
an overall percentage of all the participants. Attrition
ranged from none to 55%. Over two thirds of the studies
did not use intention to treat analysis.
A number of the included studies selectively reported out-
comes. This was primarily in the form of significant out-
comes being reported but a lack of data for other
outcomes was also apparent. In addition, many of the
studies undertook post-hoc subgroup analyses, often
where no significant main effect was detected. There was
considerable variation in the length of follow-up amongst
the trials although the majority had a maximum follow-
up of up to 12 months.
Discussion
Main findings
Information and support interventions are delivered via a
number of formats. Of these, only group interventions
(underpinned by psychoeducational theoretical founda-
tions) appear to positively impact on depression in car-
Group-based psychoeducational interventions and burdenFigure 3
Group-based psychoeducational interventions and burden.
Group-based psychoeducational interventions and depressionFigure 2
Group-based psychoeducational interventions and depression.
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egivers. The extent to which these benefits are clinically
(rather than just statistically) significant remains uncer-
tain. Putting aside the difficulties of ascertaining clinical
significance, considerable caution needs to be exercised in
concluding that group based information and support can
influence depression. The aetiology of depression is
uncertain [23] but psychological, physical and social fac-
tors are often cited as risk factors. Given the lack of impact
of information and support interventions on other out-
comes that might be expected to correlate with depression
(such as the sense of burden that is assumed to accom-
pany caregiving) the apparent impact on depressive symp-
toms should be interpreted tentatively. Indeed, other
researchers [24] have also found that depression is "sur-
prisingly" unrelated to a sense of burden and satisfaction
with life. As well as the difficulties in unpacking the rela-
tionship between depression and burden, the interface
between statistical and clinical significance presents chal-
lenges for clinicians. Specifically, the standardised mean
difference presents two major obstacles to interpreting the
apparent effects. Firstly, the quantity of the number of
standard deviations between the means – the SMD – is not
directly useable for decision making [25]. Secondly, the
reported trials all used different ordinal scales as the basis
for measurement which increases this difficulty. Interpret-
ing the clinical significance of a point estimate shift on a
single scale is often difficult, doing so for an average effect
size across four different scales (with their associated sen-
sitivities and specificities) is even more precarious. Some
studies (A10 and A24) sampled carers on the basis of their
psychological morbidity and it might be expected such
studies would illustrate the differential effects of interven-
tions. However, whilst – of the five studies included in the
meta analysis of group psychoeducational interventions –
Marriot [A24] had the second largest effect size (-0.77) it
was still only 0.06 SMD greater than the mean for the
group (-0.71) and only just statistically significant (95%
confidence interval -1.54 – 0.00). This was also a study
with only 14 carers in each arm of the comparison. It was
not possible to include the Gallagher-Thompson [A10]
study in any meta analysis as it presented analysis on the
basis of subgroups.
Overall completeness and applicability of evidence
Providing information and support alone is rare in inter-
ventions for caregivers of people with dementia – or at
Individual-based psychoeducational interventions and depressionFigure 5
Individual-based psychoeducational interventions and depression.
Group-based support interventions and burdenFigure 4
Group-based support interventions and burden.
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least those that are subject to randomised clinical trial
evaluation. Often the provision of information and what
might be termed 'support' is packaged as part of broader
intervention built on theoretical principles of problem
solving, coping or psycho-education/training. There are
also elements of information provision that are missing
from the evidence base, the most obvious being the sim-
ple provision of information as a passive activity, for
example mass media advertising of support groups, or the
targeted provision of educational materials alone.
One of the strengths of pragmatic clinical trials is the com-
mitment to replicating the 'real life' conditions of the
interventions. Often the subjects recruited for clinical tri-
als of interventions designed to support caregivers are
from the lists of support organisations such as the Alzhe-
imer's Society or from local healthcare clinics. Conse-
quently, the vast majority of the trials in this review fail to
capture the effect of the interventions on those caregivers
who are not already in receipt of some form of supportive
interventions or scrutiny. Similarly, reporting reasons for
dropping out of the trials is the exception rather than the
norm in the included studies. Therefore the possibility
exists that interventions may not be universally popular
with caregivers and that caregivers are leaving interven-
tions for reasons that are counterintuitive and hidden.
A further difficulty with the evidence base is the heteroge-
neity in the outcomes (and associated measures) used in
each trial. With the exception of burden and depression
the numbers of outcomes measured in studies is vast.
Where studies share a common outcome (such as depres-
sion) the measures used are often very different (including
condition specific measures or measures of general
health). Comparing the results of several trials of similar
interventions would be made much easier if researchers in
the area of supportive interventions would work with
those outcomes most sensitive to change and adopt some
common shared measures. Initiatives such as the US
REACH programme [26] go someway to addressing this
limitation. Perhaps the most significant weakness of the
evidence base is the short period of follow up in most clin-
ical trials. Despite the median survival time from diagno-
sis to death being over 8 years for many dementia patients
[27] the majority of studies follow-up only for 12 months.
Follow up periods are also important as it is quite possible
that caregiver needs and responses to interventions will
alter according to their stage in the caregiving trajectory
[28].
Quality of the evidence
Systematically reviewing trials in the area of support for
caregivers of people with dementia is made difficult by the
overwhelmingly poor quality of the available evidence
and the lack of adherence to what might be termed 'best
practice' in trial-based evaluation of effectiveness. The evi-
dence base is characterised by studies in which well
described randomisation, blinding of allocation or out-
come assessment, intention-to-treat analysis and restric-
tion of analysis to primary outcomes are the exceptions.
These indicators of quality are important given the possi-
ble impact on the estimated effect size – up to 30% where
randomisation alone is unclear [16].
Non blind outcome assessment increases effect size [16]
and this is more likely for subjective outcomes such as
burden ('objective' outcomes such as mortality are less
likely to be affected) [29]. Unfortunately, most of the out-
comes measured in the area of support for caregivers
(such as burden or depression) rely on self report ques-
tionnaires – a characteristic which leaves them more
prone to social desirability bias.
Very few studies made use of explicit a priori power calcu-
lations to ensure that sample sizes were large enough to
avoid type 1 and type 2 errors and thus spurious claims of
effect. Whilst statistical heterogeneity in the meta-analyses
subgroups was rare there was considerable heterogeneity
in intervention content. This was particularly so in the
extent to which interventions were informed by theoreti-
cal frameworks. Some interventions (such as Buckwalter
[A2] and Chang [A4]) were designed around explicit mod-
Individual-based psychoeducational interventions and self efficacyFigure 6
Individual-based psychoeducational interventions and self efficacy.
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els of behaviour and interaction with the caregiving envi-
ronment, whilst others such as Goodman [A17] appeared
more pragmatic.
The poor average quality of the 44 studies included in the
review actively reduces the confidence with which conclu-
sions can be drawn relating to effectiveness.
Potential limitations and strengths of the review
This review focused only on randomised trials, taking into
account the quality of the evidence involved in our analy-
sis. This is a strength, in that it makes any findings more
cautious, and also a possible limitation in that the wealth
of non-random, quasi-experimental, evidence available
may yield clues regarding the underlying effects of inter-
ventions. However, systematic reviews [10,11] and meta
analysis [30] which have included non-randomised stud-
ies suggest, as we do, that there is little evidence to support
the idea of universal effectiveness of interventions to
improve the lives of caregivers of people with dementia.
New evidence in this area is emerging all the time and
given the relatively small size of trials in each subgroup it
is likely that a large, high quality, clinical trial in a single
subgroup may significantly alter any future analysis.
Whilst the quantitative results yielded inconclusive find-
ings, many of the studies we examined reported a number
of qualitative findings that suggest that a broader
approach to the elucidation of the effects of interventions
designed to help caregivers might yield some meaningful
results and areas for more rigorous evaluation in future
research. For example, Robinson [A36] highlights the
ability to share perceptions and solve care-related prob-
lems within caregiver groups as an important qualitative
dimension of the experience of receiving the intervention.
Brennan [A1] in her report of the effectiveness of a com-
puter network found that one of the reasons for drop-out
was that 'the computer' frightened a subject. Ongoing
work on systematically reviewing qualitative findings
should help elucidate these experiences and could help
inform the development of measures of effect with greater
internal validity.
Conclusion
The recent Dementia UK report [3] recommends carer sup-
port packages and in particular psychological therapies
that include carer training and support groups. Our review
suggests that there is no evidence that information and
support-based interventions for caregivers of people with
dementia are uniformly effective. Very limited evidence
exists supporting the argument that information and sup-
port, in the context of group psychoeducational
approaches, might have a statistically significant positive
effect on depression. However, the small size of the stud-
ies involved and the considerable variations in content
within the subgroups mean that this conclusion should be
interpreted very cautiously. Moreover, despite the statisti-
cal significance of the result, the clinical significance of the
improvement remains uncertain. The relationship to any
possible harms (such as an increased sense of burden as a
result of having to receive the intervention) also remains
unknown.
For any policy maker or service planner in the area of carer
support there are fundamental questions that require
answers: "which carers are most likely to benefit from our
service?"; "in what circumstances will this package be
effective?"; "at what stage in the caring trajectory should
we introduce this service to deliver the most benefit to car-
ers?". Our research suggests that evidence based decision
makers will have to wait some time for the answers to
these vital questions. The quality of the existing evidence
base, as revealed in this review, simply does not allow evi-
dence-based estimates of such effects. Caring is an emo-
tive subject, and addressing the possibility that what is
provided by health services to help carers may not be as
beneficial as we would like to believe is a challenging
research agenda; but perhaps more than ever, there really
is a need for radical scrutiny of what exists and what we
can learn from well constructed evaluations.
Competing interests
The author(s) declare that they have no competing inter-
ests.
Authors' contributions
CAT: study design, screening of papers and data extraction
of included studies, data analysis, preparation of manu-
script.
KS: study design, screening of papers and data extraction
of included studies, preparation of manuscript.
JH: screening of papers and data extraction of included
studies, data analysis, preparation of manuscript sections
and commented on other sections.
YFB: data extraction of included studies and commented
on manuscript.
CB: data extraction of included studies, contribution to
analysis and commented on manuscript.
JA: moderator for disagreements relating to inclusion/
exclusion of studies, data extraction and commented on
manuscript.
BMC Geriatrics 2007, 7:18 http://www.biomedcentral.com/1471-2318/7/18
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Appendix 1: References to included studies and
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Additional material
Acknowledgements
The authors would like to thank the editorial staff of the Cochrane Demen-
tia and Cognitive Improvement Collaborative Review Group for their
assistance with searching for this review and commenting on earlier drafts.
Thanks also to authors of papers included in the review who provided addi-
tional information.
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Additional file 1
details of the included studies. The spreadsheet includes details of the
interventions and controls, their duration, the method of the included
study, the means of allocation, outcomes reported and reported results.
Click here for file
[http://www.biomedcentral.com/content/supplementary/1471-
2318-7-18-S1.xls]
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Pre-publication history
The pre-publication history for this paper can be accessed
here:
http://www.biomedcentral.com/1471-2318/7/18/prepub
    • "For some exiting carers, however, the decision to seek residential aged care support services for their care partner was made in light of the goals to reduce their stress levels and to regain their health. International research on carer decisions regarding seeking external support suggests that the carer's own deteriorating health is often the main factor in help-seeking [4, 31] . Consequently, if the carer's health was continuing to deteriorate, despite the assistance and education received, their participation in coaching may not have been the catalyst for the decision to seek supported long-term care services for the PWD. "
    [Show abstract] [Hide abstract] ABSTRACT: Background Maintaining the health and well-being of family carers of people with dementia is vital, given their potential for experiencing burden associated with the role. The study aimed to help dementia carers develop self-efficacy, be less hassled by the caring role and improve their health and well-being with goal-directed behaviour, by participating in an eight module carer coaching program. Methods The study used mixed methods in a pre/post-test/follow-up design over 24 months, with assignment of consented dementia carers to either individualised (n = 16) or group coaching (n = 32), or usual carer support services (n = 43), depending on preference. Care-giving self-efficacy and hassles, carer health, well-being and goal-directed behaviours were assessed over time. Analysis of Variance (ANOVA) was used to compare changes over time and the effects of coaching on carer self-efficacy, hassles and health, using the Univariate General Linear Model (GLM). Results All carers were hassled by many aspects of caring at baseline. Participants receiving coaching reported non-significant improvements in most areas of self-efficacy for caring, hassles associated with caring and self-reported health at post-test and follow-up, than did carers receiving usual carer support. Group coaching had greater success in helping carers to achieve their goals and to seek help from informal and formal support networks and services. Conclusion The study outcomes were generally positive, but need to be interpreted cautiously, given some methodological limitations. It has been shown, however, that health staff can assist dementia carers to develop self-efficacy in better managing their family member’s limitations and behaviour, seek help from others and attend to their health. Teaching carers to use goal-directed behaviour may help them achieve these outcomes.
    Full-text · Article · Dec 2016
    • "Previous systematic reviews of psychosocial interventions for people with dementia Nevertheless, previous systematic reviews on psychosocial interventions for people with dementia have neglected to give specific attention to how they may enhance personhood and/or offer the person an opportunity to leave a legacy. The majority of reviews have focused primarily on psychosocial interventions for caregivers of those with dementia to support them in their caregiving activities and enhance their wellbeing , rather than looking at the person with dementia [19][20][21][22][23][24] . Those which have addressed psychosocial interventions for people with dementia, have focused on the agenda to ameliorate symptoms [25][26][27] , reduce challenging behaviours, (including agitation and wandering) [12,[28][29][30][31][32]; enable a reduction of medication [33] , improve cognitive function [34, 35], or a combination of all of these [36] . "
    [Show abstract] [Hide abstract] ABSTRACT: Background Epidemiological predictions suggest that dementia will continue to rise and that this will have social and economic ramifications. Effective interventions, beyond pharmacological management are needed. Psychosocial interventions have largely been investigated in relation to carers of people with dementia, or with regards to their ability to manage dementia symptoms, improve cognition, and reduce challenging behaviour. However, since dementia is a life-limiting illness and people with dementia are at risk of having their personhood compromised, psychosocial interventions should seek to enhance personhood, and offer the potential for the person to leave a legacy. Methods An integrative review was carried out to identify, assess, appraise and synthesise studies featuring interventions, which relate to both personhood and legacy. Search strategies were developed in key databases: MEDLINE; PsycINFO; Embase; Joanna Briggs Institute; CINAHL; Cochrane Database of Systematic Reviews; ASSIA. Grey literature was also identified through free-text searches. Results Thirty six articles were included in the final review, these were tabulated and were assessed based on how the intervention related to personhood and legacy. Classification resulted in three themes being identified: Offering aspects of legacy; Acknowledging the person behind the patient; Facilitating meaningful engagement. Generally, personhood aspects of interventions were well reported, but further research is required to explore legacy potential of psychosocial interventions for people with dementia. Conclusion The integrative review provides an overview and exploration of an under-researched area, and provides directions for future research, which will help expand the evidence base and ultimately help improve patient care for people with dementia and their families.
    Full-text · Article · Dec 2016
    • "Also, these effects depended on the kind of intervention carried out, with psychoeducational and psychotherapeutic interventions showing the most consistent effects, above those of respite care, support groups, knowledge and multicomponent. In turn, meta-analysis conducted by Thompson et al. in [28] only found significant improvements on depressive symptoms and for group psychoeducational interventions , while the effects of the rest of interventions and on the rest of the variables (burden, quality of life, etc.) were not significant. On balance, the three meta-analyses referred above prove moderate effects on certain variables and on certain type of interventions. "
    [Show abstract] [Hide abstract] ABSTRACT: Educational initiatives for informal caregivers have proved efficient at reducing some of their symptoms, consequence of their involvement in care giving. However, more progress must be made in terms of the design of more successful interventions. Randomized clinical trial to test the efficiency of an Education Program for Primary Informal Caregivers of Hospitalized Dependent Patients in relation to their burden, mental and physical health, and care related knowledge. Cluster Randomized Trial. 151 participants, primary caregivers of hospitalized, dependent patients, carried out from February 2009 to March 2010. They were assigned at random to two groups: one received an intensive educational program (n = 78), and the other just a generic speech (n = 73). The degree of burden of caregivers was recorded (Zarit Test), as well as their physical and mental health (SF12) and their knowledge of caregiving, before, immediately, after and one and a half months after the intervention. These analyses were carried out according to the Generalized Estimated Equations Method, in order to assess any possible improvements. Participants´ burden did not improve, as measured by Zarit Test (p = 0,338), nor did their physical (p = 0,917) or mental health (p = 0,345). However there was an improvement in their hygiene caregiving (p = 0,001) and mobility care giving (p = 0,001). Caregivers found useful the education program, providing them with an informal support group. Interventions need to be longer and more customized as well as adapted to specific demands. There is a lack of validated questionnaires to assess improvements in care knowledge. There is a need to develop programs that contemplate continuity of care from primary to specialized caregiving. Cluster randomized trial: ESCPD2010.
    Full-text · Article · Dec 2015
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