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A systematic review of the economic evidence for home support interventions in dementia
Paul Clarkson1*, PhD, MSc, BA (Hons)
Linda Davies2, MSc, BA (Hons)
Rowan Jasper1, MPhil, BSc (Hons)
Niklas Loynes1, MA, BA (Hons)
David Challis1, PhD, MSc, BA (Hons)
and members of the HoSt-D (Home Support in Dementia) Programme Management Group.
1 PSSRU, Division of Population Health, Health Services Research and Primary Care, 2nd Floor,
Crawford House, University of Manchester, M13 9PL, UK.
2 Centre for Health Economics, Division of Population Health, Health Services Research and Primary
Care, Oxford Road, University of Manchester, M13 9PL, UK.
* Corresponding author: Dr Paul Clarkson, PSSRU, Division of Population Health, Health Services
Research and Primary Care, 2nd Floor, Crawford House, University of Manchester, M13 9PL, UK;
email: [email protected]; tel: 44(0)161 275 5674.
Key words: Dementia, home support, economic review, cost measurement
Acknowledgements
This research was funded by the National Institute for Health Research (NIHR) in England under its
Programme Grants for Applied Research (Grant Reference Number: DTC-RP-PG-0311-12003). The
views expressed in this paper are those of the authors and not necessarily those of the NHS, the
NIHR or the Department of Health in England.
Members of the Programme Management Group include: Dr Jane Hughes, Professor David Jolley,
Professor Chris Roberts (University of Manchester); Professor Martin Orrell, Narinder Kapur
(University College London); Professor Brenda Roe (Edge Hill University); Professor Fiona Poland
(University of East Anglia); Professor Ian Russell (Swansea University); Jean Tottie (Together in
Dementia Everyday); and Reagan Blyth (Pennine Care NHS Foundation Trust). We would like to
thank Rebecca Hays for initial help in developing the search strategies. We thank staff of the UK
Centre for Reviews and Dissemination at the University of York for making available critical appraisals
of the papers arising from the review.
ABSTRACT
Objectives: Recent evidence signals the need for effective forms of home support to people with
dementia and their carers. The cost-effectiveness evidence of different approaches to support is
scant. This review aimed to appraise economic evidence on the cost-effectiveness of home support
interventions for dementia to inform future evaluation.
Methods: A systematic literature review of full and partial economic evaluations was performed using
the British National Health Service Economic Evaluation Database (NHS EED) supplemented by
additional references. Study characteristics and findings, including Incremental Cost Effectiveness
Ratios (ICERs), where available, were summarised narratively. Study quality was appraised using the
NHS EED critical appraisal criteria and independent ratings, agreed by two reviewers. Studies were
located on a permutation matrix describing their mix of incremental costs/effects to aid decision-
making.
Results: Of 151 articles retrieved, 14 studies met the inclusion criteria: 8 concerning support to
people with dementia and 6 to carers. Five studies were incremental Cost Utility Analyses, 7 cost-
effectiveness analyses, and 2 cost consequences analyses. Five studies expressed ICERs as
cost/QALY (£6,696 to £207,942/QALY). In 4 studies, interventions were dominant over usual care.
Two interventions were more costly but more beneficial and were favourable against current
acceptability thresholds.
Conclusions: Occupational therapy, home-based exercise, and a carers’ coping intervention
emerged as cost-effective approaches for which there was better evidence. These interventions used
environmental modifications, behaviour management, physical activity, and emotional support as
active components. More robust evidence is needed to judge the value of these and other
interventions across the dementia care pathway.
Introduction
With population ageing, dementia is a significant public health and care challenge. In 2015, 9.9
million new cases of dementia were estimated each year worldwide, one case every 3.2 seconds [1].
Worldwide it is estimated that 46.8 million people were living with dementia in 2015, reaching 74.7
million in 2050 [1]. At the current rate of prevalence, there were 850,000 people with dementia in the
UK in 2015, which is forecast to increase to over 1 million people by 2025 and over 2 million by 2051
[2]. In 2015, the total estimated worldwide cost of dementia reached US$ 818 billion, and will become
a trillion dollar condition by 2018 [1]. At present, the cost of dementia in the UK is estimated at £26.3
billion per annum [2], leading commentators to term the search for cost-effective ways to improve the
care of people with dementia and their families the ‘£20 billion question’ [3]. Currently there is no
evidence-based method of preventing or curing dementia as it is a chronic, long-term condition
associated with high levels of physical as well as cognitive problems and increased risk of death.
However, the immediate priority remains helping people to live well with dementia [4], through
developing interventions likely to ameliorate difficulties and enhance well-being, so-called tertiary
prevention [5].
About 60 per cent of people with dementia live at home. Helping them to live well requires
home support from a variety of agencies. A range of home support interventions are available, with
little clear evidence of effectiveness and cost-effectiveness [6, 9]. There is evidence that psychosocial
interventions, broad-based approaches offering different ways of supporting people with dementia and
their carers to overcome challenges and maintain health, are potentially effective [7,8]. Whether and
how these approaches can be effectively translated into routine home support is uncertain [9]. The
evidence about how particular components (‘active ingredients’) of these interventions could be
combined into different models of support is relatively weak. There is uncertainty about the likely costs
and effects and value for money of adopting such care and support models for people with dementia.
This systematic review therefore critically assesses economic evaluations of home support
interventions in dementia, as part of a wider research programme to appraise evidence and conduct
primary research into the most cost-effective home and personal support arrangements for people
with dementia and their carers (National Institute for Health Research (NIHR) in England, Programme
Grant for Applied Research no. DTC-RP-PG-0311-12003).
Methods
Searches and study selection
The British National Health Service Economic Evaluation Database (NHS EED)
(www.crd.york.ac.uk/CRDWeb//) was searched for full (where both cost and effectiveness data are
available to compare two or more interventions) and partial (that where no comparator is employed)
economic analyses (PC, RJ). The NHS EED, commissioned through the English Research and
Development programme, has been providing access to cost-effectiveness information from studies
since 1994, through the Centre for Reviews and Dissemination (CRD) at the University of York. It
provided one of the most extensive, specialist repositories of studies where an economic evaluation of
technologies had taken place. The NHS EED contained economic evaluations of healthcare
interventions, along with critical appraisals containing a summary of the effectiveness information on
which the economic evidence was based and details of the key elements of the evaluation,
summarizing the overall reliability and generalizability of each study. The appraisals were written and
independently checked by health economists with in-depth knowledge and experience of economic
evaluation methods.
Until the end of March 2015, when central government funding to produce the NHS EED
ceased, the database was updated weekly by CRD staff using a robust, sensitive search to identify
published economic evaluations [10,11]. Our search, using this database, was not restricted by
publication date, so as to increase the pool of economic evaluations of home support interventions to
be appraised. The full search was completed by 15.01.2015.
The search terms used to identify economic evaluations included in the NHS EED database
were:
((dementia OR Alzheimer) AND (therapy OR treatment OR intervention OR non
pharmacological OR psychosocial) OR (home care))
The search strategy was developed and tested by an experienced systematic reviewer (RH)
prior to deciding on the final search terms and this process was informed by the search strategy of a
wider evidence synthesis, including a systematic review of non-economic studies of home support in
dementia, from the parent research programme [12].
Owing to the imminent, planned withdrawal of funding for the NHS EED, searches of the
database were supplemented by other searches to identify studies that may not have been included.
The electronic search was supplemented by a search of the INTERDEM (Early detection and timely
INTERvention in DEMentia) website (http://www.interdem.org) and a hand search (PC, RJ).
INTERDEM is a pan-European network of researchers collaborating in research on and dissemination
of early, timely and quality psychosocial interventions in dementia aimed at improving the quality of
life of people with dementia and their supporters, across Europe. The reference lists of publications
identified in NHS EED and INTERDEM were also searched (PC, RJ) and experts in the field who had
previously published economic evaluations in social care and dementia were consulted (PC). These
additional search strategies were used to identify studies published between January 2014 and
January 2015 and any previous or recent systematic reviews of economic evaluations of non-drug
interventions for dementia.
Inclusion and exclusion criteria
Table 1 shows the inclusion/exclusion criteria, using the PICOS (Population, Interventions,
Comparators, Outcomes and Study Designs) framework [13]. Only English language sources were
consulted. The main purpose of the review was to discern the cost-effective evidence with respect to
the components of several different approaches to dementia home support that had been evaluated.
Therefore, studies assessing only resource use, for example effects on numbers of hospital
admissions, were excluded unless unit costs were employed to fully cost an intervention.
Data extraction
One researcher (PC) screened the titles and abstracts of all citations retrieved against the inclusion
criteria, with a second (RJ) confirming the inclusion or exclusion of each study. The full-texts of these
studies were then retrieved and screened against the inclusion criteria (PC, RJ), with uncertainties
and disagreements resolved through discussion.
After screening, one researcher (RJ) extracted data using a standardised form [13], with
these data checked by a second reviewer (PC). The fields included: author, year; country; study
objective; intervention and comparator descriptions; methods (analytical approach, measure of health
benefit, cost data, analysis of uncertainty); results (participant numbers in intervention/control groups;
reported costs and outcomes of the intervention/comparator; Incremental Cost-Effectiveness Ratio
(ICER)); and conclusions.
Quality assessment
Two researchers (PC, RJ) together determined the extent to which the reported studies complied with
criteria of good practice in economic evaluation by summarizing them against their NHS EED critical
appraisals. These criteria were those set out in the CRD NHS EED Database Handbook [14], which
was used to guide those staff undertaking the critical appraisals. The criteria were: whether a clear
rationale was given for the choice of comparator; whether the methods of modelling techniques and/or
statistical analysis were clearly reported and appropriate; whether the estimates of effectiveness,
health benefit and costs were likely to be valid and any sources of bias; and other issues
(generalizability, comparison with other studies, selective presentation of results, and whether
conclusions were justified).
However, as the NHS EED critical appraisals, undertaken by multiple CRD staff, may
themselves have been variable in quality, two reviewers (PC, RJ) also rated the studies independently
using the Consensus on Health Economic Criteria checklist of Evers and colleagues [15,16], a tool
recommended in a systematic review of tools [17], with disagreements between the reviewers
resolved through discussion. The two assessments share some criteria in common, although the
NHS EED critical appraisals were structured narratively whereas the Evers checklist [15] simply
signals whether each of nineteen criteria are satisfied. Thus, the results of each rating were
compared side-by-side, across the studies, highlighting agreements and discrepancies, to draw
conclusions concerning the overall quality of each study.
Data synthesis
Two methods were used to synthesise the results. Firstly, a narrative synthesis was used to
summarise, compare and contrast the aims, methods and results of the studies reviewed. This
illustrates the heterogeneity of the studies in terms of characteristics and settings [13]. Where
possible, information was summarised across studies about the cost perspective (e.g. public agency
costs only, societal costs), the interventions themselves, the measures of benefit used and ICERs.
For ICERs, net costs were converted to a common currency (both $US and £Sterling) and price year
(2014) using the CCEMG–EPPI-Centre Cost Converter (v.1.4) [18]. As part of this synthesis, the
interventions evaluated in each study were also mapped to a range of intervention ‘components’,
which described the essential ingredients of each intervention in a way that would permit their
translation into routine practice. These components were defined as “common and distinctive
techniques across evaluated interventions” (p.379) [19], and were derived from an overview of
systematic reviews of non-pharmacological interventions for dementia [12], by extracting descriptive
data from the reviews, regarding particularly the foci of interventions and their outcomes. Each study
was also reviewed to determine its location on the care pathway for the United Kingdom (UK). This
was necessary to inform policy on dementia home support and future implementation. Evidence
about usual care pathways was based on material in national reports [2, 9].
Secondly, where data permitted, a permutation index [20] was used as a framework to
present the outcomes of the evaluations from the review, in terms of their relative costs versus effects.
This index ranks all possible permutations of costs and health outcomes, providing an instant visual
summary of findings and their likely implications for the decision maker. This matrix was used to
guide potential decisions as to whether an intervention may be deemed acceptable in terms of its
relative cost-effectiveness if it were adopted in routine practice.
Results
Literature search: Identification of studies
Overall, our search identified 151 potentially relevant studies, 14 of which were included in the review.
The selection process is shown in Figure 1. One systematic economic review for dementia care
(including pharmacological treatments and non-home based interventions) was identified [21]. This
was consulted to identify other potentially relevant studies not available from the searches of the NHS
EED.
Study descriptions
Table 2 summarises the characteristics of the economic analyses that were selected. There were
eight studies directed towards supporting people with dementia and six specifically for carers. Five
studies were incremental Cost Utility Analyses [24,25,27,31,35], seven cost-effectiveness analyses
[22,23,26,28,29,30,35], and two were cost consequences analyses [32,34].
The studies differed quite markedly in terms of their design, the cost elements included and choice of
outcome measures. One study [25], synthesised data from secondary sources in a Markov model to
estimate the cost utility of the intervention. Fifteen studies used primary cost and outcome data
collected in prospective evaluations. Of these, eight studies [22,26,27,28,30,32,34,35] used a
randomised controlled trial design, four [23,25,29,33] were non-randomised comparisons and one [31]
used a pre/post-test design.
Five studies [24,25,27,31,35] used the QALY as the measure of health benefit. Four studies
used a health benefit measure related to the impact on carers [22, 23, 26, 33]; measures of health
benefit differed in the remaining studies. Two studies [32,34] did not report a measure of
effectiveness or health benefit.
Quality assessment
Each study was summarized against the two sources of quality appraisal to raise key issues
(Appendix A). Overall, few studies met all our combined quality criteria. For some, there was
insufficient detail of comparators [22,27,28,29] and/or of measures of health benefit [22,23,25,27,29].
For others, the cost perspective [22,29,30] or price year [23,26,28,29] was not stated. In some
studies, incremental analysis of costs and outcomes of alternatives was not undertaken [22,29,32,34]
and in most studies there was no sensitivity analysis [22,23,24,29,30,31,32,33,34].
For most studies, the NHS EED and our independent ratings concurred, notable exceptions being
those of Roberts et al. [22], Challis et al. [23], Drummond et al. [24], and Gitlin et al. [28], where NHS
EED appraisals did not provide sufficient information to rate against several items on the Evers
checklist [15]. NHS EED critical appraisals were unavailable for four studies [31,32,33,34], but our
independent ratings identified weaknesses for these in terms of: poor description of competing
alternatives [31,33]; the lack of comprehensive costs measurement [31,33]; not identifying all
important and relevant outcomes [31,32,33,34]; and lack of sensitivity analyses [31,32,33,34].
Four studies emerged as being well reported and of high quality [26,27,30,35], although these
were still subject to limitations. The study by Graff et al. [26], for example, did not state the price year
and that by Pitkala et al. [30] did not state the cost perspective. The NHS EED critical appraisals for
some, otherwise well reported, studies did not rate against the criteria of generalizability, conflicts of
interest and ethics/distributional issues; an example being the study by Wilson et al. [27]. It was not
necessarily the case that more recent studies, published after systematic guidelines for reporting
economic evaluations, were of higher quality.
Data synthesis results
A range of potential intervention components were present across the studies (Table 3). Half (N=7) of
the interventions [22,24,26,28,31,33,35] were multicomponent; a tailored activity programme [28], for
example, included elements of physical activity for people with dementia but also education/advice
and behaviour management for carers. The most common component across interventions was
behaviour management for carers – education on techniques to identify and modify beliefs and
develop new repertoires of behaviour to deal with behavioural challenges of the person with dementia
– occurring in five studies. Care co-ordination – connecting and bringing together different services
around the person with dementia or caregiver or advising on and negotiating delivery of services from
multiple providers to provide benefit – was present in three of the studies. Of potential components of
interventions identified in the literature [8] three – sensory stimulation or relaxation, cognitive training
and emotional support for the person with dementia – were not present in any of the interventions
reviewed.
The interventions described in the studies were located on the care pathway for dementia
[1,9]. Two of the studies, a care management approach in primary care [34] and a community
occupational therapy intervention from memory clinics [26], were located earlier along the care
pathway, where dementia is likely to be in its mild to moderate stages, where people are beginning to
experience early symptoms, such as decline in short-term memory and difficulties following a
conversation [24]. Two other studies, a more intensive care management intervention [23] and an
exercise programme for the person with dementia [30] were located at a later stage, where dementia
is likely to be in its moderate to severe stages, where completing everyday activities becomes more of
a concern [24]. All interventions with primary benefits for carers [22,24,27,28,32,33,35] were located
at the moderate to severe stages. There were no interventions, such as for example palliative care
approaches [37], at the final or severe stage.
Results from each study on the permutation index, showing where each sits in relation to its
relative incremental costs versus benefits, are shown in Table 4. There were no studies occupying six
out of the nine cells of the matrix, either because the intervention over comparator was more costly for
the same or lower effects (dominated); had similar costs for a net gain, no difference or lower effects;
or was less costly but for lower effects. However, in four studies [26,30,32,34] the intervention was
dominant (less costly and more effective) (cell g, Table 4) with one study finding similar effects at
lower cost (cell h, Table 4). Here the evidence would indicate acceptance of these interventions.
However, for most (N=9) studies, the interventions were more effective but more costly (cell
a, Table 4), justifying incremental analysis as to whether there is a willingness to pay this additional
cost. For these studies where requisite data were available (N=5), the range of incremental costs per
QALY gained (converted to £/$ at 2014 prices) ranged from £6,696 ($9,790) [35] to £207,942
($304,010) [25]. Two of these interventions, a specialist dementia day care service [31] and a carers’
coping intervention [35], had values under the revised (2015) threshold value of acceptable cost per
QALY gained recommended to the UK National Institute for Health and Care Excellence (NICE) of
£12,936 per QALY [38].
Discussion
Main findings
This systematic review of economic evaluations of home support approaches for dementia revealed a
relatively small number of studies reporting both the costs and effects of these interventions. Studies
varied in quality and their inclusion of relevant costs and effectiveness measures. Differences in
design and in particular, the non-reporting of key parameters and estimates of variability in some,
makes it difficult to draw firm conclusions about which approaches could be considered most cost-
effective. However, against this, the better quality studies provided some useful findings on the value
of specific forms of home support, which could be taken forward by policymakers.
Four studies [26,30,32,34] found the intervention to be dominant with a further two studies
[31,35] finding home support approaches cost-effective under current recommended willingness to
pay thresholds. Thus, from these studies, there is some positive evidence of cost-effectiveness from
approaches that focus on occupational therapy [26], home-based exercise [30], specialist day care
[31], a social service intervention [32], care management [34], and a carers’ coping intervention [35].
However, study quality was variable with only three of these studies [26,30,35] well reported and of
higher quality. Thus, occupational therapy, home-based exercise, and a carers’ coping intervention
emerging as cost-effective approaches for which there was better evidence. These interventions
used environmental modifications, behaviour management, physical activity, and emotional support
as active components.
Strengths and limitations of review methods
This review adds to the literature by providing critical evaluation of the cost-effectiveness evidence in
a developing area, where there is a paucity of well-conducted studies. The methodology used broad
search terms within a comprehensive, regularly updated database (NHS EED) and the resultant
retrieved studies were quality appraised, using both the NHS EED quality appraisal process and our
own independent ratings, using a recommended checklist [15]. The data synthesis not only described
the studies, as an aid to comparability, but also mapped the location of each intervention on the
dementia care pathway and additionally, elicited the components of each intervention. The latter
element is particularly worthwhile as it may assist policymakers, who require knowledge of how and
why particular interventions may work [39] to benefit people with dementia or their carers.
Our review has several limitations. Heterogeneity in terms of study designs, methods, interventions
and outcome measures meant that a narrative summary was used and a formal meta-analysis of
studies was not possible. In terms of quality assessment, there were discrepancies in results for
particular studies, between the two instruments chosen. This arose because rating systems used to
measure quality vary in their comprehensiveness and there is a lack of agreement on what an ideal
instrument for quality assessment would be [40].
Some studies reviewed [24,25,31,32] were also published before the development of
guidelines for reporting economic evaluations and so their quality may have been compromised.
However, these studies did evaluate forms of home support not covered by more recent studies, so
their inclusion was warranted on the basis of examining a fuller range of possible interventions.
Furthermore, the permutation index used to summarise the potential acceptability of interventions was
limited in comparison to the approach adopted by NICE, which assesses the ICER in the context of
the uncertainty that surrounds it. Nevertheless, this was thought to be useful in providing an easily
discernible summary for the policymaker. In five studies ICERs were expressed in terms of £/QALY,
enabling direct comparisons as to cost-effectiveness. Comparison of the ICER from interventions with
a threshold value of £/QALY indicates whether or not the health benefit gained from their use exceeds
the health expected to be lost elsewhere in the health system [38]. The UK NICE recommended
threshold value (£12,936/QALY) [38] was chosen as an estimate, based on current UK data, of the
scale of opportunity costs faced by the public health agency (the NHS). However, its use has been
debated [41].
Further research
There was a lack of sufficient data on both costs and relevant comparable effects (such as utility
values to construct QALYs) for the full range of potential home support interventions. Predominantly,
this paucity of data was due to a lack of mean per person costs, and indications of variability in costs
for particular interventions. On the effects side, however, only 5 studies provided data in terms of
QALYs, permitting comparable ICERs to be calculated. Thus, additional data, particularly on a
comprehensive array of costs, potentially arising from these interventions, is necessary to guide future
evaluation. These data could be collected from national reports [1,9,]. Alternatively, special data
collections, for example on utilities for people with dementia [42] at different stages, appropriately
inflated or deflated according to their receipt of specific interventions, could be used. To improve this
situation, there is a need for well-designed and reported integrated clinical and economic trials of
dementia home support that can offer robust evidence of costs and effects.
There was a relative lack of studies investigating cost-effectiveness for specific interventions
at particular stages of dementia. Most of the interventions occurred at moderate to severe stages of
dementia, later in the care pathway. Only two [26,34] were undertaken with people in the early stages
of dementia. It is here that interventions may offer sustainable benefits to people in terms of them
‘living well’ with the condition. One type of intervention with potential benefit at this stage may be one
with a cognitive training component [43], addressing memory deficits by stimulating cognitive
functions through guided practice, reflecting memory, attention or problem solving. More robust
evidence, from well-conducted trials, is needed to judge the value of such an intervention. The
criterion ‘delivered at home’, meant that some economic studies with favourable outcomes, but in
other settings, reported in the literature were excluded from this review. Interventions such as
cognitive stimulation therapy [44], delivered in nursing homes or day centres, may potentially be
useful but further studies are necessary to adapt its principles and methods for delivery to patients or
carers in their own homes. There were no studies at end-stage dementia, such as palliative care
approaches, which is an area of topical interest [45].
Conclusions and implications
This review identifies three approaches for which there is positive cost-effectiveness evidence:
occupational therapy, home-based exercise, and a carers’ coping intervention. In particular, the
approaches rely on the active components of: environmental modifications, behaviour management,
physical activity, and emotional support. Decision makers should seek to configure home support
services for dementia building on these approaches. Policy makers should also align such cost-
effectiveness evidence with patient and carer preferences about what combinations of these
ingredients are most valued as part of packages of home support [46]. However, future studies are
necessary since the economic evidence around these home support interventions is far from robust.
Better quality data is needed to judge the value of these and other interventions at particular points
along the dementia care pathway. In particular, economic evidence of new approaches in early stage
dementia, such as home-based cognitive training, and in late stage, such as palliative care, is
required.
Acknowledgements
This research was funded by the National Institute for Health Research (NIHR) in England under its
Programme Grants for Applied Research (Grant Reference Number: DTC-RP-PG-0311-12003). The
views expressed in this paper are those of the authors and not necessarily those of the NHS, the
NIHR or the Department of Health in England.
Members of the Programme Management Group include: Dr Jane Hughes, Professor David Jolley,
Professor Chris Roberts (University of Manchester); Professor Martin Orrell, Narinder Kapur
(University College London); Professor Brenda Roe (Edge Hill University); Professor Fiona Poland
(University of East Anglia); Professor Ian Russell (Swansea University); Jean Tottie (Together in
Dementia Everyday); and Reagan Blyth (Pennine Care NHS Foundation Trust). We would like to
thank Rebecca Hays for initial help in developing the search strategies. We thank staff of the UK
Centre for Reviews and Dissemination at the University of York for making available critical appraisals
of the papers arising from the review.
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Table 1 Inclusion and exclusion criteria for the review
Population. At least 80% of the population must have a diagnosis of dementia, only including: Alzheimer’s Disease, vascular dementia, fronto-temporal
dementia and dementia with Lewy bodies. The dementia may be mild, moderate or severe. Populations with mild cognitive impairment (MCI) or
cognitive impairment as a result of an acquired brain injury or other rarer dementias (e.g. AIDS acquired dementia) were excluded.
Interventions. Included were interventions that were non-pharmacological and non-invasive and delivered at home to the person with dementia and/or their
carer. Invasive interventions, involving the consumption or application of a substance (including drugs, vitamins and food supplements, herbal
medicines and homeopathic remedies, oxygen and acupuncture) were excluded but assistance with activities of daily living, including feeding, was
included. Interventions, providing formal support (i.e. not purely through informal and family channels) may be categorised, according to their
expressed purpose, as Supportive, Informational, Therapeutic, or Educative (SITE). Supportive approaches rely on both an emotional component
and one that assists in the maintenance of both basic and instrumental activities of daily living; Informational approaches include general
information about dementia and its consequences; Therapeutic approaches include structured involvement to meet emotional needs such as
counselling and psychotherapy; and Educative approaches include skills training for both carers and people with dementia to help in managing
behaviour. Support involving Assistive Technology was included, if this was set up or delivered by people (e.g. a nurse visiting at home to set up a
computer system and/or train a carer in how to use it), and the expressed purpose of this could be included in the above categories of support.
Interventions containing a day care element were included, as this was interpreted to be providing a respite component for carers. Interventions
delivered exclusively in residential, nursing homes or clinics were excluded but those provided to tenants of extra-care housing were included.
Comparators. Usual care or treatment as usual; this may include pharmacological treatment. In some settings, usual support may mean the absence of formal
care services or care only by informal carers (relatives and friends). Partial economic evaluations, where no formal comparator was employed,
were included.
Outcomes Included: For the person with dementia (PWD): Time to care home admission; hospital admissions; quality of life (including Quality Adjusted Life
Years); activities of daily living (ADLs); behavior; cognition; mood. For the caregiver (CG): Quality of life; Burden / stress / anxiety.
Study designs Full and partial economic analyses from studies where the designs were: randomised controlled trials (RCTs), non-randomised controlled studies,
cohort studies, modelling studies. Editorials or other descriptive studies (e.g. historical discussion, single case reports) were excluded.
General Included were studies conducted anywhere in the world; but English language sources only were consulted. No date restrictions were applied:
sources were searched from inception up to 15.01.2015.
Table 2 Summary of economic analyses of home support interventions for people with dementia/carers
Reference (year) Country Study objective Intervention
description
Methods Results/conclusions
Roberts et al. (1999) [22] Canada To determine
effectiveness of
individualised
problem-solving
counselling by
nurses for
caregivers and
expenditure of
health care
utilisation
Nurse counselling. A
problem solving
manual was used plus
10 individual sessions
with a nurse
counsellor over a 6-
month period
Cost-effectiveness analysis.
Measure of benefit:
Psychosocial Adjustment to
Relatives Illness.
Cost data: public agency and
caregiver perspectives.
Source of data: single study.
Analysis of uncertainty:
Statistical comparisons only.
There were greater costs to the
intervention as against a small
(non-significant) improvement in
carers’ psychosocial adjustment
after 1 year.
ICER Not reported.
Challis et al. (2002) [23] England, UK To evaluate a
model of intensive
care management
for people with
dementia/carers
based in a
CMHTOP
Intensive care
management service -
case managers
deployed flexible
budgets and
maintained structured
care plans which were
completed at regular
intervals
Cost-effectiveness analysis.
Measure of benefit: carer
malaise.
Cost data: public agency and
societal.
Source of data: Single study.
Analysis of uncertainty:
Statistical comparisons only.
Increased costs from the
intervention as against beneficial
effects in terms of people with
dementia remaining at home
and a decrease in carer stress.
The setting of the intervention
(Community Mental Health
Team) was crucial in targeting
resources on a specific frail
group of older people.
ICER Not reported.
Drummond et al. (1991) [24] Canada Economic
evaluation of a
support
programme for
caregivers of
people with
dementia
Caregiver Support
Programme (CSP) -
Caregiver support
nurses (CSN) first
made regular home
visits providing
information and
advice, then
scheduled weekly in-
home respite, and
self-help support
groups
Cost-utility analysis.
Measure of benefit: QALY.
Cost data: public agency
perspective.
Source of data: Single study.
Analysis of uncertainty: none.
Increased costs of the
intervention as against a (non-
significant) enhancement in
caregivers’ quality of life.
$CDN 20,036/QALY reported.
Net cost of adding intervention:
ICER= $CDN 12,090/QALY
(£19,373/QALY)a.
Wimo et al. (1995) [25] Sweden To perform a cost
utility analysis on
group living in
order to calculate
the costs per
QALY gained
Group living - in
comparison with
controls at home or
controls in institutions
Cost-utility analysis.
Measure of benefit: QALY.
Cost data: public agency
perspective.
Source of data: secondary
sources – decision analytic
model.
Analysis of uncertainty: One
way sensitivity analyses
undertaken using: alternative
discount rates for costs and
benefits, utility values,
survival times, transition
Increased costs of intervention
as against enhanced quality of
life for people with dementia.
Cost/QALY < $0 for 8 year
model extrapolation.
ICER= $US 211,900/QALY
(£207,942/QALY)a
probabilities, and costs of
institutional care.
Graff et al. (2008) [26] Netherlands To assess the cost
effectiveness of
community based
occupational
therapy compared
with usual care in
older people with
dementia and their
caregivers from a
societal viewpoint
Community based
occupational therapy -
10 one hour sessions
administered by
occupational
therapists in own
home to improve
meaningful activities
Cost-effectiveness analysis.
Measure of benefit: No. of
successful treatments:
(significant improvement in
three outcomes: process
scale, performance scale,
competence scale).
Cost data: societal
perspective.
Source of data: Trial based
analysis.
Analysis of uncertainty: One-
way and probabilistic
sensitivity analyses
(bootstrapping) undertaken.
Decreased costs from
intervention with main cost
saving arising from informal
care; this against an increase in
successful treatments.
ICER not reported
Wilson et al. (2009) [27] England, UK To evaluate the
cost-effectiveness
of a structured
befriending service
for carers of
people with
dementia in terms
of improving their
quality of life
Carers had access to
a Befriender
Facilitator (BF), and
offer of contact with a
trained volunteer for
the duration of the
scheme. Weekly
home visits for at least
six months from
Cost-utility analysis.
Measure of benefit: QALY.
Cost data: societal
perspective.
Source of data: Trial based
analysis.
Analysis of uncertainty:
confidence intervals for
outcomes and costs
Increased costs from
intervention as against improved
carer quality of life.
ICER= £105,954/QALY
(£118,261/QALY) a.
£28,848/QALY (£32,198/QALY)
a, if patients also included
volunteer overseen by
the BF (flexible
around the carer)
generated using
nonparametric bootstrapping;
scenario analyses performed
from statutory, voluntary and
household sectors, and from
societal perspective including
both carer and patient
QALYs.
Gitlin et al. (2010) [28] Philadelphia, US To evaluate the
cost-effectiveness
of a Tailored
Activity Program
(TAP) for
individuals with
dementia and
family care givers,
delivered by
occupational
therapists
Eight sessions of
activities over 4
months (identifying
patients' preserved
capabilities, previous
roles, habits and
interests) to develop
customised activities
and train families in
their use. Delivered by
occupational
therapists
Cost-effectiveness analysis.
Measure of benefit: average
carer hours "doing
things"/“on duty” per day.
Cost data: public agency
perspective cost of
intervention only.
Source of data: Single study.
Analysis of uncertainty:
analysis of covariance
conducted to test differences
between groups; probabilistic
sensitivity analysis
Conducted; one-way
sensitivity analyses varied
costs between minimum and
maximum values for therapist
time and travel expenses.
Increased costs from
intervention as against savings
for carers ‘doing things’ and
‘being on duty’.
ICER not reported.
Kuo et al. (2010) [29] Taipei, Taiwan To explore the
optimal model of
dementia care in
Taiwan by
evaluating care
costs, Quality of
Life and healthcare
settings of people
with dementia
living in home care
versus institutional
care settings
Usual home /
community care was
the intervention in
comparison with
institutional care
settings for people
with dementia
Cost-effectiveness analysis.
Measure of benefit: Quality of
life/utility.
Cost data: public agency and
caregiver perspectives.
Source of data: Single study.
Analysis of uncertainty: Only
statistical comparisons used
for between-group
differences.
Lower costs from intervention
(home care) but costs were
higher when indirect (carer)
costs were included.
ICER not reported.
Pitkala et al. (2013) [30] Finland To investigate the
effects of intense
and long-term
exercise on the
physical
functioning/mobility
of home-dwelling
patients with
dementia and to
explore its effects
on the use and
costs of health and
social services
Exercise with a
home-based group
performing physical
exercise for 1 hour
twice a week for 12
months under the
guidance of
physiotherapists
Cost-effectiveness analysis.
Measure of benefit: patient
functional independence.
Cost data: public agency
perspective.
Source of data: Trial based
analysis.
Analysis of uncertainty:
Standard deviations or 95%
confidence intervals
reported; bootstrapping used
to derive confidence intervals
for costs.
Increased costs of a home
based exercise intervention as
against beneficial effects on
physical functioning of people
with dementia.
ICER not reported.
Wimo et al. (1990) [31] Sweden To evaluate the
use of resources,
costs and effects
on the well-being
of people with
dementia in day
care/undertake a
cost utility analysis
comparing costs
and effects on
wellbeing
Specialist dementia
day care in three day
care units, with social
workers, activity
assistants, home aid
and assistant nurse.
All staff had
approximately a
month of dementia
training prior to the
start
Cost-utility analysis.
Measure of benefit: Quality of
life/utility.
Cost data: public agency
perspective.
Source of data: Single study.
Analysis of uncertainty: none.
Overall increased costs arising
from the intervention as against
improvements in the quality of
life of people with dementia.
SEK48,076/year translates to
ICER=£4293/QALY
(£7565/QALY) a.
Weinberger et al. (1993) [32] Philadelphia, US To evaluate the
impact of a social
service
intervention
(compliance to
social work
recommendations)
on 6-month health
services utilization
and expenditures
Social workers
devised an
individualised service
plan for caregivers
tailored for them and
followed this up with
contacts to enhance
compliance to the
plan's
recommendations
Cost consequences analysis.
Measure of benefit:
compliance to social work
intervention (no data
reported).
Cost data: public agency
perspective.
Source of data: Trial based
analysis.
Analysis of uncertainty: none.
Lower costs arising from
intervention group as against a
high rate of compliance to social
work intervention elicited.
ICER not reported.
McGuire (1998) [33] US To evaluate the
effectiveness of a
computer system,
ComputerLink, in
A computer
programme with three
sections to enhance
caregivers’ confidence
Cost-effectiveness analysis.
Measure of benefit: carers’
decision competence.
Cost data: public agency
Increased costs arising from the
intervention as against
increased decision confidence
reducing
caregiver's social
isolation and
increasing decision
making confidence
and improve their
decision making skills
perspective.
Source of data: Single study.
Analysis of uncertainty:
Statistical comparisons only.
amongst carers.
ICER not reported.
Duru et al. (2009) [34] California, US To calculate
intervention costs
and the potential
cost offset of a
care management
intervention to
subsequently
improve the quality
of care
People with dementia
and their caregivers
assigned a care
manager who
performed structured
home assessments,
care plans and
followed up as needed
plus at home re-
assessment every six
months
Cost consequences analysis.
Measure of benefit: not
reported but evidence of
improved patient/carer
outcomes from Vickrey et al.
2006 [36], including patient
health related quality of
life/utility.
Cost data: public agency and
societal perspectives.
Source of data: Trial based
analysis.
Analysis of uncertainty:
Statistical comparisons only
used for between-group
differences (with 95%
confidence intervals
reported).
Lower costs arising from the
intervention as against
improvements in the quality of
life of people with dementia.
ICER not reported.
Knapp et al. (2013) [35] England, UK To assess whether
the START
Manual based coping
intervention of eight
Cost utility analysis. Increased costs arising from the
intervention as against
(Strategies for
Relatives)
intervention added
to treatment as
usual was cost
effective compared
with usual
treatment alone
sessions delivered in
own home to carers of
people with dementia
by supervised
psychology graduates
Measure of benefit: QALY.
Cost data: public agency
perspective.
Source of data: Trial based
analysis.
Analysis of uncertainty:
Bootstrapping used to
estimate 95% confidence
intervals around cost
estimates. Cost-effectiveness
acceptability curves for
likelihood that intervention
was cost-effective over a
range of values for
willingness to pay for
additional QALY/HADS unit
change. Sensitivity analyses
to assess effects of missing
data, and to adjust outcomes
for initial imbalances.
improvements in the quality of
life of carers.
ICER = £6000/QALY
(£6696/QALY) a
a Converted to £ Sterling at 2014 prices
Table 3 Data synthesis, components of interventions
Components Studies [reference]
Primarily for person with dementia
Sensory stimulation/relaxation*
Social engagement† [31]
Cognitive training‡
Emotional support§
Physical activity a [28,30]
Environmental modifications b [25,26]
Behaviour management c [26]
Daily living activities d [29]
Care coordination e [23,32,34]
Primarily for caregiver
Education/advice f [24,28,33]
Social support g [24,27]
Behaviour management h [22,26,28,33,34]
Emotional support i [22,35]
Respite care j [24,31]
* To increase or relax the overall level of sensory stimulation in the environment to counterbalance the negative impact of sensory deprivation/stimulation common in dementia.
† To provide access to different forms of social contact to counterbalance the limited contact with others that may be characteristic of the experience of dementia. This social contact may be real or simulated.‡ To provide enhancement and stimulation of cognitive functions through guided practice on a set of standard tasks, reflecting memory, attention or problem solving.§ To address feelings and emotional needs through prompts, discussion or by stimulating memories and enabling the person to share their experiences; undertaken to counterbalance and help people manage difficult feelings and emotions.a To provide structured activities and/or exercise to provide meaningful and engaging experiences that can be a useful counterbalance to difficult behaviours.b To modify the living environment, including the visual environment, in order to lessen agitation and/or wandering and promote safety.c To increase pleasant events and/or to identify and modify factors which lead to difficult behaviours or their consequences through distraction or communication.d To assist with basic care, e.g. provision of laundry services, basic nutrition and help with activities of daily living.e Connecting and bringing together different services around the person; advising on and negotiating the delivery of services from multiple providers on behalf of the person to provide benefit.f Structured presentation of information concerning the condition and carer-related issues (e.g. legal issues, carer’s health), including an active role for carers, e.g. role-playing.g The opportunity to share personal feelings and concerns and overcome feelings of social isolation.h Education on techniques to identify and modify beliefs and develop new repertoires of behaviour to deal with behavioural challenges of the person with dementia.i To resolve pre-existing personal problems that can complicate caregiving and that can reduce conflicts between caregiver and person with dementia.j Planned, temporary relief through the provision of substitute care, e.g. day care, in-home sitting, residential care for the person with dementia.
Table 4 Data synthesis, results of the studies on the permutation matrix: number [reference] of studiesIn
crem
enta
l cos
ts
(inte
rven
tion
vs. c
ompa
rato
r)Incremental effects (intervention vs. comparator)
Net gain (+) No difference (0) Net loss (-)
Increased (+) a
9 [22,23,24,25,27,28,31,33,35]
c
none
c
none
Same (0) d
none
e
none
f
none
Reduced (-) g
4 [26,30,32,34]
h
1 [29]
j
none
Key:
Decision strongly favoured
g=accept intervention
c=reject intervention
Decision less favoured
d=accept intervention
b=reject intervention
f=reject intervention
h=accept intervention
No obvious decision
a=is added effect worth additional cost? Incremental analysis required.
j=is reduced effect acceptable given reduced cost? Incremental analysis required.
e=neutral cost and effect. Other reasons to adopt intervention?
Figure 1 Flow chart of the study selection process
Additional references from other sources:5 INTERDEM; 19 Systematic review, Knapp et al. 2013 [21]; 1 Known recent study
126 Potentially relevant references identified from NHS EED
151 Total retrieved references
12 Duplicates
139 Title/Abstracts reviewed
38 excluded (not dementia population)
57 excluded (invasive or drug technology
6 excluded (not delivered at home
38 full papers retrieved
6 excluded (not dementia population
3 excluded (invasive/drug technology
1 excluded (editorial/descriptive study)
12 excluded (not delivered at home)
2 excluded (non-English language)
14 Studies Included
Highlights
i. What is already known about the topic?
A range of dementia support interventions have been implemented and their costs and benefits have been evaluated. However, cost-effectiveness evidence is limited. A systematic appraisal of these interventions, in terms of costs versus benefits, has not yet taken place.
ii. What does the paper add to existing knowledge?
The better quality evidence suggests that three approaches: occupational therapy, home-based exercise, and a coping intervention for carers may be cost-effective, judged against current thresholds. The paper also adds to existing knowledge in delineating the components of evaluated interventions across the dementia pathway, an important element for those, such as local policymakers, wishing to devise possible interventions in routine practice.
iii. What insights does the paper provide for informing health care-related decision making? (optional)
The paper highlights what may be acceptable interventions, in terms of costs versus benefits but more detailed evidence is needed to inform policy makers, particularly for interventions in the early and very late stages of the condition.
Appendix A
Table A1 – Quality rating of studies1
Evers et al. checklist items Roberts et al. [22]
Challis et al.[23]
Drummond et al.[24]
Wimo et al.
(1995) [25]
Graff et al. [26]
Wilson et al. [27]
Gitlin et al. [28]
Kuo et al.
[29]
Pitkala et al. [30]
Wimo et al.
(1990) [31]
Weinberger et al.[32]
McGuire [33]
Duru et al. [34]
Knapp et al. [35]
1. Study population clearly described?
a b a b a b a b a b a b a b a b a b a* a* * a* a b
2. Competing alternatives clearly described?
a a b a b a b a b a b a b * a* * a* a b
3. Well-defined research question in answerable form?
a a b a b a b a b a a b a* a* * a* a b
4. Economic study design appropriate to stated objective?
a a b a a b a b a b a a b a* a* * a* a b
5. Chosen time horizon appropriate to include relevant costs and consequences?
a a b a a b a b a b a b a* a* a* a*
6. Actual perspective chosen appropriate?
a a b a a b a b a b * a* * a* a b
7. All important and relevant costs for each alternative identified?
a a b a b a b a b a b a b * a* * a* a b
8. All costs measured appropriately in physical units?
a b a b a b a b a b a b a b a b a b a* a* a* a* a b
9. Costs valued appropriately?
a b a a b a b a b a b a a* a* a* a* a b
10. All important and relevant outcomes for each alternative identified?
a a b a b a b a b a b a b a b * * * * a b
11. All outcomes measured appropriately?
a b a b a b a b a b a b a a b * * a* * a b
12. Outcomes valued a b a a b a b a b a a b a b * * a* * a b
appropriately?13. Incremental analysis of costs and outcomes of alternatives performed?
a a b a b a b a b a b a b a* * a* * a b
14. All future costs and outcomes discounted appropriately?
NA NA NA a b NA a b NA NA NA* * NA* NA* NA
15. All important variables, whose values are uncertain, appropriately subjected to sensitivity analysis?
a b a b a b a * * * * a b
16. Do conclusions follow from the data reported?
a a b a b a a b a b a b a b a* a* a* a* a b
17. Study discusses generalizability of results to other settings and patient/client groups?
a b a a b a a a b * a* a* a* a b
18. Article indicates that there is no potential conflict of interest of study researcher(s) and funder(s)?
a b a a a * * * a* a
19. Ethical and distributional issues discussed appropriately?
a b a a a * * * * a
1 Rated against checklist of Evers et al. [15] and NHS EED critical appraisals: a Satisfies criteria of Evers et al. [15]; b satisfies criteria of NHS EED critical appraisal.NA = not appropriate to discount as intervention lasted < 1 year.* No NHS EED critical appraisals were available for studies [31,32,33,34].Criteria used in NHS EED critical appraisals followed the United Kingdom National Health Service Centre for Reviews and Dissemination. NHS Economic Evaluation Database Handbook, April 2007 [14].