Components, impacts and costs of dementia home support: a research programme including the DESCANT RCT

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Background

‘Living well with dementia’

With the population ageing, dementia represents a significant public health and care challenge. 1 It is a major cause of disability and high-cost care in older people. 2 Finding cost-effective ways to improve care to people with dementia and their families has been termed the £20B question. 3 More recent figures suggest that the cost is around £24B a year in England. 4 Almost half of this cost is attributed to unpaid family care. Social care costs are three times higher than health-care costs. There is a growing body of research that addresses this question, including work on primary prevention (i.e. preventing the development of dementia) and secondary prevention (i.e. offering early treatment). 5 The immediate priority, reflected in policy,6 is one of helping people to ‘live well with dementia’, tertiary prevention, ameliorating difficulties and enhancing well-being. This translates to enabling those with dementia and their family carers to live as well as they can from a humane perspective.

Approximately 60% of people with dementia live at home. Helping people with dementia to live well necessitates establishing appropriate and effective home or personal support, including that from the NHS and social care (often in combination) and taking into account the wishes and views of carers. There is insufficient overview of the different forms of support available, including their relative effects and cost-effectiveness. 2 Studies of psychosocial interventions have identified potentially effective approaches,7 but there has been little or no work translating these into routine home support provided by NHS and social care organisations, nor in evaluating these. For care and support, the evidence base regarding how components (‘active ingredients’) of interventions could be combined into different models of support, and the likely costs and effects of adopting these, is weak compared with treatment for dementia. Translating this evidence into models of support that could benefit the NHS and social care is therefore compromised.

The clinical characteristics of dementia render individuals less able to care for themselves, more prone to emotional and behavioural problems and more likely to have poor physical health. 8,9 Support at home has to respond to these needs appropriately, including enhancing existing coping skills of people with dementia and their carers. Medicines management is one area that can be confusing and burdensome. The needs of individuals and families in accessing appropriate help over the course of life with dementia are changeable and diverse. 10 Support required also needs to be compatible with, and take heed of, existing support networks of people with dementia and their families. 11 Therefore, people with dementia require specialist support from a range of sources, including family, friends, professional health and social care agencies and also charitable organisations. 12

Service reviews have testified to a lack of appropriate home support services for people with dementia. The National Institute for Health and Care Excellence (NICE)/Social Care Institute for Excellence drew attention to the lack of robust data on the organisation and delivery of services for people with dementia and their carers, and the need for specialist support at home. The Association of Directors of Adult Social Services13 reported fragmented services and a lack of clarity about what preventative services are most effective. The National Audit Office10 highlighted the paucity of data about the costs and benefits of home support, causing local decisions on priorities to be ill-informed. We know very little of the range of specialist home care (domiciliary care) for dementia commissioned by local authorities and this is an under-researched area as far as costs and benefits of provision are concerned.

Evidence suggests that although specialist home support for older people with dementia exists in some localities, it is often underdeveloped. Older people with dementia receive a higher level of support than those without. However, this is often less than expected given their level of impairment. 14 Home support to those with dementia is often underdeveloped in comparison with services for older people generally. 15 This is despite the fact that specialist home support is perceived by service users, carers and care workers to deliver better-quality care than standard services. 16

Evaluating home support for dementia

Both the NHS and social care providers provide home support to people with dementia and their families. We appear to know more about unhelpful approaches to supporting people with dementia and carers at home than we do about effective forms of home support. Home support from social care (‘home care’) is provided largely in a ‘generic’ manner to older people, in general, rather than tailored specifically to the needs of people with dementia. This is largely task based, with little heed paid to the particular nuances of individual presentation of the condition,17 and may be indicative of the ‘old culture’ of dementia care. 18 Within the NHS, home support for people with dementia in later stages is provided via Community Mental Health Teams (CMHTs), for example through support workers. This appears not to be co-ordinated well and, in some areas, teams do not provide this support. 10 There appears, therefore, to be scope for more specialist and person-centred approaches to the care of people with dementia at home. The recent Lancet commission on dementia5 articulated principles for such approaches. There is no magic bullet. Interventions should be multicomponent and individualised to need, with support for carers to develop their own coping skills and to modify the environment around the person with dementia.

There are challenges to evaluating such approaches to home support, where they might exist. Existing meta-analyses of studies investigating home support to older people, in general,19–21 have argued for more precise descriptions of the actual components employed (i.e. ‘who, did what, where and how’). An analysis of such components, where these exist within more specialist models of support,22 would be beneficial. For example, for people in the early stages of dementia, early identification through memory clinics has been one development,23 but we know little of the way in which follow-up at home is conducted allied to this. 24 Preliminary studies testify to potential benefits of a home-based information and memory management component at this stage. 25 There is therefore a need for more robust evidence, building on this work. Research also suggests that specialist domiciliary care for people with dementia at later stages can reduce the likelihood of requiring, or delay entry into, long-term care26,27 and enable carers to care for longer. 26 For the NHS, reduction in hospital admissions, which can have a deleterious effect for people with dementia, may be one benefit of developing more intensive or specialist models of home support.

This National Institute for Health Research (NIHR) programme was framed in response to these challenges. It drew on and aimed to extend previous Department of Health and Social Care-funded work17 in marshalling evidence and primary research into the most cost-effective home and personal support approaches for people with dementia.

Effective home support in dementia care programme overview

The programme aimed to discern different models of home support, systematise them, survey their current operation in England and evaluate their cost-effectiveness in providing care for people with dementia and their carers. It also aimed to disseminate findings in the form of guidance for managers and commissioners.

The research was undertaken between September 2013 and March 2020. The main output was to develop evidenced-based guidance on home support models for dementia care, with direct applicability by NHS trusts and partner organisations. Importantly, we included social care and the third sector. We aimed to understand the benefits of different forms of home support in terms of more efficient and effective care and how they might enhance the patient and carer experience.

Addressing issues in developing more cost-effective home support approaches in dementia care required a multiphase work programme. Figure 1 outlines the research programme, its constituent parts (i.e. workstreams) and individual projects within them. The programme consisted of three interconnected thematic workstreams that contained nine projects designed to generate an integrated understanding of effective home support for older people with dementia. Each workstream sought to enhance evaluation of one of the three core features of effective home support for people with dementia: (1) the components of high-quality home support, (2) its impact and (3) the costs and consequences of service delivery. The workstreams were thematic and so individual projects within them were not undertaken sequentially. A research pathway diagram of the stages and development of the interconnecting workstreams and how they contributed to the whole programme is shown in Figure 2.

FIGURE 1.

Effective home support in dementia care: workstreams, projects and their relationships. DCE, discrete choice experiment.

FIGURE 2.

Research pathway diagram of stages and development of workstreams. DCE, discrete choice experiment.

Workstream 1

In workstream 1, we identified the components of home support that may benefit people with dementia and their carers through three projects. First, we undertook a narrative synthesis of two literature reviews (an overview of reviews and a systematic review). Second, we conducted a national survey of different components of existing provision in England. Third, we developed an economic model to inform analyses later in the programme.

Workstream 2

In workstream 2, we assessed the impact of two forms of home support. First, a new intervention that was funded at the inception of the programme offered people with early-stage dementia support and guidance on the use of memory aids through dementia support practitioners (DSPs) from memory clinics. We tested the clinical effectiveness and cost-effectiveness of this intervention in a pragmatic randomised trial and a process evaluation to investigate fidelity and practice. Second, we examined through a prospective observational study naturally occurring packages of home support for people with later-stage dementia and their carers. Again, we tested the clinical effectiveness and cost-effectiveness of these approaches, but this time through multivariate models of effects and costs. The evidence from both these primary studies and other evidence from across the programme was used to develop a toolkit to guide managers and commissioners in how best to provide home support.

Workstream 3

In workstream 3 we evaluated the costs and consequences of different approaches to home support through three projects. First, we undertook an analysis of the balance between costs of informal carer and statutory support by using case vignettes and costing methodology. Second, we examined the preferences of people with dementia and carers through two discrete choice experiments (DCEs) in early- and later-stage dementia. Third, we conducted economic modelling to bring together results from the two primary studies, above, and allied this with data from the economic development work in workstream 1.

Within each workstream, patient, public and carer involvement (PPCI) was crucial to the effective collection and dissemination of evidence. We worked together with established groups in framing the individual studies, designing methods of data collection and in the analysis, interpretation and dissemination of findings.

Workstream 1: identifying components of home support that may benefit people with dementia and their carers

Workstream 1, undertaken during the first 2 years of the programme (September 2013 to September 2015), had the following aims:

• to investigate the evidence for effective components of psychosocial interventions for dementia in any setting (via an overview of systematic reviews) and to assess the extent to which they can be combined into multicomponent approaches to support people with dementia and their carers at home (via a systematic review)

• to assess the presence of different components of home support in existing provision in England through a national survey of NHS and social care (local authority) services

• to develop an economic model to inform later analyses in the programme.

Findings from the systematic reviews were brought together to inform other programme studies [i.e. the national survey and economic model development, evaluation of home support models in later-stage dementia (workstream 2) and DCEs investigating people with dementia and carer preferences (workstream 3)]. The national survey, in turn, informed the choice of which home support models to evaluate in workstream 2 and definitions of attributes for the DCEs in workstream 3. Likewise, the economic model development informed the methods used to evaluate home support models in workstream 2 and was consolidated in workstream 3.

Workstream 2: impact of different forms of home support

Workstream 2 was conducted throughout years 4–6 of the programme. We aimed to:

• evaluate memory aids in early-stage dementia through a pragmatic trial

• estimate the effectiveness of different emerging models of home support in later-stage dementia

• disseminate evidence-based guidance through a toolkit developed in one trust area and roll out with commissioners, managers and practitioners.

Workstream 3: evaluation of the costs and consequences of different approaches to home support

In this workstream, we aimed to identify the costs of models of home support to public agencies, people with dementia and carers, and their cost-effectiveness. We elicited data on costs and consequences through examining the preferences of staff, carers and people with dementia. This work supported the overall programme aim of examining the success of tertiary prevention for dementia care at home and maintaining well-being, if possible, by minimising people with dementia’s reduced function and ameliorating negative impacts (e.g. by reducing unplanned hospital admissions). Such actions are thought to reduce costs,167 but policy-makers need to understand the consequences for different parties of different forms of home support and their interactions with care provided by carers. To justify the NHS and social care providing more individually tailored care, improvements in the patient–carer experience is required. This workstream generated data on these issues and therefore enabled the economic model, already developed, to evaluate the home support models emerging from the programme.

Involvement of patients or the public

Public, patient and carer involvement was integral to the development and operation of the programme. The PPCI Reference Group and the LAP of carers of those with dementia contributed to the design, methods and interpretation of the programme. The PPCI Reference Group contributed to the original bid to NIHR, when members met with investigators PC, BR and JT in Liverpool to advise on the design of the individual projects in the programme. This meeting was facilitated by Greater Manchester CRN and was made possible by a small grant from the Research Design Service North West (Lancaster, UK).

Throughout the programme, the PPCI Reference Group advised and contributed to examining the following:

• What are the effective components of services? This information was used to inform the evidence synthesis in workstream 1.

• In what ways could home support services help? This information was used to assist with literature on the components in Appendix 1.

• The economic model: what works? What are the disadvantages of certain services? This information was used in the development of the economic model in workstream 1.

• Materials for the proposed DESCANT (memory aids package and intervention manual) and encouragement of participation through the addition of an appropriate dementia guide. The group commented on all materials ready for the pilot phase of the trial in workstream 2.

• Diagnosis and usual care in memory clinics. This information was used to help describe usual care and determine the follow-up period for the DESCANT.

• Strategies to maximise recruitment to the trial in response to shortfall of potential participants through memory clinics in November 2016. This included editing of participant-facing materials (e.g. information sheets) to stimulate recruitment.

• Research questions for the qualitative study within the trial and interpretation of the analysis.

• Co-production of the Plain English summary for this report.

The LAP were involved in assisting in the design and piloting of the questionnaires for the vignette exercise (see Workstream 3, Analysis of costs to people with dementia and carers and their relationship to formal care) and DCEs (see Workstream 3, Discrete choice experiments establishing the value of different components of support).

Our PPCI work was evaluated continuously as we progressed through the programme. Members were asked about what they thought were the strengths and limitations of their involvement, and what they saw as the benefits to themselves and to the programme. The PPCI Reference Group co-wrote a paper outlining this public engagement work on the programme. The published output183 from this element of the programme is in Appendix 12.

A variety of methods of en5gagement were used. The PPCI Reference Group met face to face and also corresponded with the research team by e-mail and telephone. The LAP ‘met’ electronically through e-mail. The positive feedback from PPCI members was that this mix of approaches worked well. There were unforeseen circumstances and challenges around the operation of this element of the programme. Maintaining groups of people over an extended time in a complex research programme was such a challenge. Members were absent through illness at points and two members sadly died during the programme. Hence, the PPCI Reference Group was replenished with new members at various points, made possible by the involvement of TIDE.

An unforeseen challenge was the COVID-19 pandemic and the need to respond accordingly. NHS and local authority advice led us to cancel our very last PPCI Reference Group meeting in Liverpool on 13 March 2020 and communicate findings electronically. Other PPCI groups representing this vulnerable population may benefit from our experiences.

Reflections on what was and what was not successful in the programme

We envisaged in the original bid that data would enable us to construct economic models that could generalise to the national picture regarding the most cost-effective home support approaches. However, in developing our economic model (workstream 1), we found that the available data were of limited quality and were missing in some important areas, for example in early-stage dementia. It was not possible therefore to construct reliable mathematical models to inform judgements of cost-effectiveness as we originally intended. The programme was successful in collecting primary data from participants in both early- and later-stage dementia to judge the cost-effectiveness of different approaches (see Workstream 3, Cost–utility modelling of the impact of home support models). Indeed, these primary studies collected comprehensive data, often from very vulnerable people with dementia and their carers, with large sample sizes, which was a testament to the skill mix of the research team and also the sustained support of colleagues in the CRN.

Our observational study in later-stage dementia was successful in achieving a large sample size, permitting the planned analysis of the effectiveness of different intensity care package groups. It generated a unique and comprehensive data set on the routine care received by people with dementia at later stages and their carers living at home. Such a comprehensive array of data on what usual care consists of (including social care as well as NHS care) is, to the best of our knowledge, not available elsewhere in the UK. Although we found no evidence of effectiveness in more intensive support, according to our planned analysis, the data provide an opportunity for further work on the effects of different forms of care available, permitting secondary analyses of the data in different ways. The data offer potential evidence from everyday real-world dementia care at home, including evidence of relative costs and outcomes of different service mixes for different groups. Such data would be useful for social and health-care commissioners who would like to see more detailed information, for example on the costs/benefits of specific services within care packages, such as dementia support workers and home care. Evidence on subgroups, such as those living alone or with comorbidities, would also help to target resources to areas of need.

The embedded qualitative studies hosted within the trial and observational studies were successful in two ways. First, they demonstrate the feasibility of collecting rich qualitative data without additional burden to participants. Second, the data provided new insights into the challenges of undertaking, and people with dementia participating in, research interviews using standardised measures. However, the embedded qualitative work from the trial was intended to provide data on participants’ assessments of the impact of memory aids in combating memory loss to enhance understanding of the intervention. Instead, the findings shed light more on the specific challenges for people with mild to moderate dementia of being a research participant. In this respect, this work was unsuccessful in achieving its original aim, despite producing insightful data on people’s responses to the research process itself, principally the trial. These insights, particularly how standardised measures might be received and responded to by participants, should inform future feasibility studies, particularly trials, in this population.

Limitations relating to the method or execution of the research

All projects on the programme, apart from the exact form of the final economic model (see Reflections on what was and what was not successful in the programme), were undertaken as originally intended. However, several limitations emerged, with respect to both the methodology and the execution of the research.

Robust methods, both quantitative and qualitative, were used throughout, which was a strength of the programme. However, methodologies offered by particular studies do raise limitations in the findings from other parts of the programme. For example, from the reviews, the home support models containing education, social support and behaviour management appeared most effective. In addition, the DCEs did not point to memory aids as the most preferred intervention by people with dementia and their carers. It is possible, therefore, that the intervention evaluated in our trial was not what people wanted or needed, which may have limited its efficacy.

In our analysis of costs to people with dementia and carers and their relationships to formal care (see Workstream 3, Analysis of costs to people with dementia and carers and their relationship to formal care), the sample of 28 people consulted to provide feedback on the type and hours of their own and formal care was small. However, our decision to focus on people with moderate to severe dementia was appropriate, as a group with milder dementia would be likely to have minimal care needs. However, it would have been interesting and important to explore wider personal and societal costs that were not part of the original study design; for example, the costs of informal care, such as informal carers being unable to work or have their own leisure time, and reduced hospital admissions for patients with dementia.

The outcome measures chosen for both the trial and the observational study were ones used previously in other dementia care studies, and for which there were data already available to assist in sample size calculations. Particularly for ADL (i.e. BADLS, the primary outcome in both studies), there are data available on the minimum clinically important difference to estimate expected effects for trial sample sizes. There are no such data available for other outcomes that may be important, such as quality of life (DEMQOL), and certainly none for other outcomes of value that have been developed more recently. This is a current challenge in trial science for dementia studies. Although improvements in, or at least maintenance of, ADL is an appropriate outcome measure to investigate effectiveness of care in later-stage dementia, it may not have been sensitive to potential effects of the trial intervention in early stages. In addition, in a wider sense, a measure of functioning like BADLS may not reflect an outcome that is viewed as important by people with dementia and their carers. BADLS is also limited in being an informant-rated measure. One of our inclusion criteria for entry to the trial was that the person with dementia should have a carer in touch with them who could comment on their functioning, using the BADLS. This carer need not have been living with the participant and in our trial a large proportion (37%) were not. Nevertheless, using BADLS as an outcome would exclude participants with dementia in particular circumstances, such as those without any contact with friends or family. This could compromise future trial designs for more vulnerable and isolated people with dementia and other outcome measures may be more appropriate.

There were challenges in executing the research. Most of the participants in the trial were white. It is possible that there was recruitment bias here in that people with dementia from certain cultural backgrounds may not access mainstream services, such as memory clinics, which was the access point for the trial. Non-white participants may therefore have been harder to recruit, but could have possibly benefited from the intervention. There were delays and difficulties in recruitment to both the trial and the observational study. These led to delays in data collection and some limitations in the data available for the final analyses. For example, the DESCANT did not recruit to its target sample size of number of patients randomised or followed up. There was significant attrition (26%), slightly more than anticipated, and so there were missing follow-up data for outcome measures. For the observational study, attrition was 25%, which was in line with expectations in this more vulnerable and frail population. Although the follow-up period for both studies was relatively short (6 months), this can be a long time in the lives of people with dementia and their carers. Circumstances change and the condition fluctuates. Participants did drop out or refuse follow-up interviews, as is their right to do. These delays and difficulties are common in dementia research, particularly in trials, where recruitment is often difficult. Nevertheless, we achieved large target sample sizes, particularly for the observational study, which recruited from a more vulnerable population. However, to achieve this necessitated extensions to the programme. For the trial, this also needed negotiations around excess treatment costs, initially with Clinical Commissioning Groups and then local CRNs, as governance arrangements changed during the life of the programme.

The research was mainly undertaken in England (with one trial site being in Wales), which may limit the generalisability of the findings to other countries with different health and social care systems. However, the reviews examined international literature that were designed to achieve similar aims to those explored in this programme, as a whole, and had findings relevant to international developments in home support for dementia.

Conclusions from the whole programme

This was an integrated programme, with the whole being greater than the sum of its parts. The results from the individual projects paint a picture of the components that may make up effective home support, their impact, and their potential costs and effects. Bringing all results together, we conclude the following:

• Our literature searches identified several components, in varied combinations, that could potentially be implemented to support people with dementia and their carers at home. For carers, these were behaviour management, education and advice, social support, emotional support and respite. For people with dementia, these were environmental modifications and care co-ordination. There was little evidence in the literature on the effectiveness of cognitive support, daily living assistance and physical activity for people with dementia living at home. Home support interventions of potential benefit are ones combining education, social support and behaviour management, particularly to carers. For people with dementia, modifying the immediate environment and co-ordinating care delivered by different agencies emerged as potentially the most effective.

• Our national surveys identified a range of currently available services that might use these components in different ways. The NHS provides services (e.g. CMHTs and memory services) that include information and advice, relaxation and behaviour management. Most memory clinics and CMHTs also provide advice on memory aids, but there was a need identified for rigorous evidence of their effectiveness. Social care provides respite care and day care (the most frequently reported services) and specialist home care (to a lesser extent), which includes support with daily living activities as a central component and occasionally social and emotional support.

• Our DCEs and vignette study generated evidence about the preferences of people with dementia, carers and professional staff for components of home support packages. The method, although demanding for participants to complete, was well received and enabled people to state what approaches they valued as part of a package of care. Advice on memory aids and cognitive support was judged of value by people with dementia and carers (but not as highly relative to other services), but was considered less important by professionals, perhaps because evidence as to their effectiveness was lacking. Carers suggested many potential components, whereas people with dementia valued advice on memory aids, emotional support, access to community facilities, health promotion, information and relaxation. Professionals were mixed in their preferences. They tended to value access to health services, home care, carer support, respite care and support with daily living activities.

• Our two primary studies in early- and later-stage dementia aimed to evaluate the effectiveness of some of these components. For early-stage dementia, our pragmatic randomised trial found no evidence of effects on daily living activities through the use of memory aids and guidance by DSPs or of effects on other secondary outcomes (i.e. cognition, quality of life, social networks or carers’ psychological health and competence). The intervention was implemented successfully and qualitative evidence suggests that it was well received and people felt engaged with it. However, the qualitative work also raised issues of the research interview itself and the use of standardised measures in trials that may be cognitively demanding for participants to respond to. Although standardised measures are necessary, the research interview is not a neutral encounter. People with dementia and their carers often had to negotiate between them and the interviewer as to what responses captured their experiences in the most reliable way. This raised challenges, and it is important in the planning of trials that investigators consider the nature and number of outcome measures chosen to help recruitment.

• For later-stage dementia, our naturalistic experiment found no evidence, overall, that more intensive packages of care were more effective than basic care at home. However, it is useful to highlight specific data that may be driving these results. For example, data from the observational study suggested that home care is successfully targeted in everyday conditions. More home care visits were associated with a greater likelihood of people with dementia remaining at home. This positive finding demonstrates that the objective of home care (domiciliary care commissioned by local authorities) was achieved successfully for people with dementia across 17 areas in England. People with dementia receiving more intensive care were less likely to remain at home. This finding demonstrates evidence of successful targeting, in that more intensive care was for more vulnerable people likely to move on to nursing or residential care, an interpretation supported by the evidence at baseline. Such findings, as above, would be interesting and useful in informing social care commissioning decisions. The qualitative work for this study revealed that carers were often trying, sometimes successfully, to maintain a ‘normal’ life for themselves and the person with dementia within the confines of the condition. They tried to arrange care in line with families’ expectations for services that were compassionate and convenient for their needs. The context of the research interview was, again, raised. The standardised measures used, intended to measure functioning and well-being, focused on difficulties and challenges for people and used words that did not necessarily align with participants’ outlooks.

• The literature has little robust evidence about the cost-effectiveness of different home support models. Occupational therapy, home-based exercise and carers’ coping interventions are potentially cost-effective. However, we need better economic evidence of home-based cognitive support in early dementia (which our trial has provided) and of later palliative care.

• Our two primary studies generated new cost-effectiveness evidence. In early-stage dementia, our DESCANT intervention is probably not cost-effective. In later-stage dementia, more intensive care packages at home are less likely to be cost-effective (i.e. they were more costly and less effective than basic care). However, from the perspective of the third sector, packages of intermediate intensity were less costly but also less effective, with these cost reductions predominantly leading to a potential for cost-effectiveness at higher cost thresholds. Again, it is useful to look at how particular data may be driving these results. For example, in our report of mean cost per item differences across the three care packages (see Appendix 11, Tables 23 and 24), the reduction in third-sector costs from more intensive packages was predominantly from reduced costs of carer groups. Such findings, of the cost consequences of different configurations of care from different sources, could be used by commissioners to decide how to allocate funding across sectors to achieve desired effects. As stated above, there is an opportunity to further use these rich data from the observational study to inform resource and policy decisions.

• Our toolkit [URL: https://sites.manchester.ac.uk/home-support-dementia/ (accessed 6 April 2021)] is a tangible product from the study and brings together all the evidence from the programme in one place in a manner useful for managers and commissioners. Our programme findings imply that health and social care decision-makers should direct their attention to tailoring services to the expressed preferences of people with dementia and their carers. People with dementia most value emotional support, access to community facilities, health promotion advice, information and signposting, and relaxation techniques. Carers value aids and adaptations, home care, support in coping with difficult behaviour and agitation, emotional support, access to community facilities, health promotion, information and signposting, relaxation and respite care. In commissioning services, decision-makers should seek to combine these services in different ways, depending on changing needs. Although the NHS and social care already provide many of these approaches to helping people with dementia ‘live well’, there might be more benefit in concentrating on approaches that are particularly effective (i.e. those combining education, social support and helping carers cope with difficult behaviour). Modifying the immediate environment around the person with dementia is particularly valuable, as is ensuring that services are co-ordinated. Home care, commissioned by local authority social care, is particularly effective at helping people with dementia remain at home and appears to operate appropriately in providing more intensive support to achieve this. It should be prioritised, despite the resource constraints currently operating within social care as carers value it. Providing memory aids to people at early stages of dementia, although valued, does not help maintain their daily living activities to a sufficient extent, and scarce resources might be better directed elsewhere. In later-stage dementia, combining more services together to help the person stay at home and support carers is not necessarily better. Much depends on people’s specific needs. It would be useful to continue to commission care from the third sector (e.g. dementia support workers, drop-in centres and tailored support to carers). The evidence is that the third sector may provide this more cheaply, but that this is not, however, necessarily more effective in maintaining quality of life.

Recommendations for future research

Building on these conclusions, we have four main research recommendations for future work: (1) research on more sensitive outcome measures for dementia trials, (2) further research on home support interventions, (3) innovative methods of recruitment for dementia intervention studies and (4) expanding methodological boundaries for cost-effectiveness analysis, particularly where social care is a large component. We describe these below in priority order.

1. There is a need to examine more sensitive outcome measures in dementia trials. Our two primary studies, at different stages of dementia, were essentially negative. Our trial showed no evidence of effectiveness on the chosen outcomes. However, the intervention was well received and qualitative research suggested that it might have led to other changes of value to participants, for example greater engagement, independence and other more subtle effects, which, to the best of our knowledge, have not been measured in trials up to now. 184,185 Other recent but unpublished dementia trials mirror these findings. There is therefore an emerging opinion in the dementia research community that more sensitive outcome measures are required. Outcomes that can measure more personal effects of value to people with dementia and their carers. We judge that the time is ripe to draw on more recently developed core outcome sets186 for use in planning future dementia trials. Aiming to use these emerging core outcomes will necessitate trial science investigations, for example analyses determining the minimum clinically important difference for promising outcomes (e.g. the Engagement and Independence in Dementia Questionnaire). 184 Such analyses would be a prerequisite to calculating appropriate sample sizes for trials using these outcomes and there is scope for undertaking these in feasibility studies before a full trial.

2. There is a need for research to elicit further evidence of multicomponent home support packages for people with dementia at different stages. 187 The knowledge base, particularly of non-pharmacological interventions and those in social care settings, is growing rapidly. Research on interventions from social care, for example those from home (domiciliary) care commissioned by local authorities, focusing on providing daily living assistance, would provide evidence in a hitherto neglected area. More recently, especially towards the end of this programme, with the limitations brought about by the COVID-19 pandemic, emerging evidence has shown a reduction in access to home support for people with dementia and their carers, which may have contributed to worsening quality of life. 188 To continue providing support, services will need to be adjusted to operate remotely, in the light of restrictions. Therefore, future research could examine how some of the home support models we have identified as showing promise, such as those with components of carer support, behaviour management and emotional support, could be adapted appropriately to be delivered remotely. Examining the preferences of different stakeholders, including people with dementia themselves, for such interventions is also a fruitful area for further research and our programme has shown that such perspectives can be elicited and people respond well.

3. There is a need for dedicated work, including intensive qualitative analysis, on the effectiveness of novel recruitment strategies to support dementia intervention studies. Data collection and recruitment for our primary studies in the programme was challenging. Although we piloted our approach in our pragmatic trial, dementia research is difficult, particularly the recruitment and retention of enough participants for analysis. These are vulnerable participants, and there are many challenges in ensuring participants’ awareness of research, supporting them in approaches to take part, informed consent, and arrangements for research interviews and data collection. The infrastructure is there, particularly through local CRNs to support with these challenges. However, there are still potential barriers to achieving sufficient numbers of participants, especially those participants who are hard to reach. Examples include those with dementia living alone or without much support from informal carers. Recruiting within social care settings, for example from home care, day care or through third-sector organisations providing support, is also an area where the CRN support infrastructure is only just developing. Although issues with recruitment for dementia trials have been researched, most of the difficulties identified, and discussion of possible strategies to ameliorate them, relate to pharmacological trials rather than non-pharmacological support interventions, such as those evidenced in this programme. 189 There is also little evidence from controlled comparison of recruitment strategies190 and therefore detailed feasibility studies testing different ways of recruiting and the benefits accrued would be potentially useful.

4. Finally, our cost-effectiveness analyses raised fruitful areas to explore methodologically. The economic evaluation of social care, a major part of this programme, was the subject of a recent review. 191 Issues include developing appropriate measures of benefit, particularly for long-term conditions like dementia where the aim is maintenance rather than cure; how to estimate costs and benefits that are the responsibility of different stakeholders (e.g. the third sector, contracted with local authorities); the appropriate threshold value with which to compare interventions, as resource responsibilities are shared between the NHS and local authorities; and the important role of informal carers, notably their contribution to utility, costs and how best to measure their inputs.

Acknowledgements

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Appendix 1 Systematic review of effective home support to people with dementia and their carers: components and impacts

Appendix 2 Components drawn from the evidence synthesis

The components in Table 2, derived from the overview of reviews, were used throughout the programme to help design and guide analyses of other subsequent projects.

Appendix 3 Survey of current provision in England

Appendix 4 Development of an economic model

Appendix 5 DESCANT: evaluation of a support model in early-stage dementia

Appendix 6 DESCANT process evaluation: examining the implementation of dementia support practitioners and guidance with memory aids for people in early-stage dementia

Chester H, Beresford R, Clarkson P, Entwistle C, Gillan V, Huges J, et al. Implementing the Dementia Early Stage Cognitive Aids New Trial (DESCANT) intervention: mixed-method process evaluation alongside a pragmatic randomised trial. Aging Ment Health 2021;1–13. https://doi.org/10.1080/13607863.2020.1870204

Appendix 7 Observational study of effectiveness of home support approaches in later-stage dementia

Observational study

Introduction

Our evidence synthesis (see Workstream 1, Evidence synthesis of studies describing components applied to home support for dementia) found evidence on home support models at later stages of dementia to be lacking. It is not known what combinations of services routinely received are most effective, along several dimensions, including helping to maintain daily living activity, enhancing well-being, reducing carers’ stress and keeping people with dementia at home for longer.

We undertook a naturalistic study of home support packages received by people in later-stage dementia and their carers in local authority areas in England. There are limited studies of the effects of service mix in this population. We drew on US work in devising care package groups for analysis162 with robust statistical methods allowing for potential confounding.

Methods

This was a prospective observational study that examined outcomes for people with dementia and their carers after receiving different packages of home support in 17 areas of England. The analysis plan, in the protocol,210 was to discern different combinations of home support services received by participants and aggregate these into care package162 groups (i.e. naturally occurring mixes of support relying on different components). We then tested the clinical effectiveness and cost-effectiveness of each of these groups against minimal, basic, care.

We based the sample size calculation (conducted a priori) on a regression model, exploring relationships between group membership, covariates and outcomes. To take account of attrition between baseline and follow-up, the target sample size at baseline interview was 400 participants.

We described naturally occurring packages of care received by people with dementia and their carers, using descriptions of service receipt from the baseline interview schedule. This identified service clusters or types of service mix. We did this initially without reference to the data and so did not construct care package types empirically by data reduction or clustering techniques. We first constructed the groups, detailing different care packages, based on our systematic literature review. This review indicated that support to carers was important and potentially effective, with packages containing environmental modifications and care co-ordination also being important. Help with daily living assistance was also important, but there was limited evidence. The resultant care packages were checked against baseline data to determine numbers populating each group. Participants were divided into no more than four care package types. This descriptive analysis was repeated using different mixes of support. We attempted to ensure sufficient participant numbers in each package, while covering as much of the data as possible.

We recruited participants according to a sampling strategy that allowed for potential variation in service mix received by people with dementia. We approached sites (local authority designated areas) with potentially different intensities of services, determined by the service mix score data from our national surveys (see Workstream 1, Survey of current provision in England). We assessed participants at baseline and 26 weeks (6 months). The primary outcome was the BADLS. Other participant outcomes included quality of life (DEMQOL), carer competence (SSCQ) and destination at 12 months (whether or not remaining at home).

In observational studies, the assignment of participants to the ‘treatment groups’ in question (here, care package types) may be influenced by factors also affecting outcomes. That is, there is a risk of confounding (i.e. the systematic error of not accounting for variables associated with both receipt of a particular care package and the outcomes under study). 165 Therefore, before the effects of different care package types were assessed, we constructed propensity scores to control for this. 166 The aim was to reduce the effects of baseline characteristics on receipt of care packages to a series of composite measures. These scores were then used to adjust for this bias in multivariate models of effects of the care package types. 211

Propensity scores were calculated as the predicted probabilities of being assigned to a care package, depending on a set of independent variables at baseline. These probabilities were estimated from a multinomial logit model. Therefore, category of care package type, at baseline, was regressed on the following variables (Table 3).

TABLE 3 - Independent variables included in propensity score construction

Variable	Data source
Hours of informal care	Baseline interview questionnaire
Index of Multiple Deprivation score for each of the geographical sites	Office for National Statistics212
Service mix scores for each of the geographical sites	Calculated from the national survey data (see Workstream 1, Survey of current provision in England)
Living alone	Baseline interview questionnaire
ADL using BADLS	Baseline interview questionnaire
Community home care expenditure for each geographical region	Adult social care finance return213

Multivariate models (linear mixed models) were then used to test the relationship between outcome measures, care package type and covariates. Propensity scores were included as covariates, as well as several other variables (Box 1). We estimated the relative effectiveness of each approach to home support against basic care, controlling for these variables. The dependent variable in each was the change in outcome (time point 2 – time point 1) over 6 months against the independent variables, including receipt of either intermediate or advanced care packages.

BOX 1 - Independent variables included as covariates in the outcomes analysis models

Variable

• Age.

• Sex.

• Duration of home care visits 6 months before baseline (in hours).

• Propensity score (of each care package type compared with the reference group).

It was possible that between baseline and follow-up there would be a change in services received by participants and hence their membership of care package groups. Therefore, we conducted a sensitivity analysis to account for this change over time. First, we compared baseline characteristics of those whose care packages had changed at follow-up with those whose care packages had not. Second, we conducted a subgroup analysis to assess any outcome differences between those whose care package had and those whose care package had not changed at follow-up.

Results

We achieved a data set and completed baseline interviews with 518 participants (pairs of people with dementia and their carers), with 389 of these participants also completing 6-month interviews, allowing measurements of effect. Therefore, the sample for analysis exceeded the minimum required. Attrition was 25% of baseline, which is in line with expectations from both our professional knowledge and other similar studies of this population. 214

The creation of care package groups from the data was challenging. A complex picture of service receipt from different agencies and professions characterised baseline service receipt. Membership of proposed packages, when grouping these data together, overlapped for many participants. Packages relying on particular components (e.g. social care-focused daily living support) were therefore not distinct from others. Participants tended to receive these services but also others included as part of other packages. Attempting to create care packages, employing only selected components, resulted in groups with very small numbers of participants (< 30) and residual numbers in no particular group, which would have meant loss of data. To simplify, eventual care package groupings relied on a measure of service intensity, which was in line with that guiding our sampling strategy from the national survey. We used a subset of eight dementia-specific home support services (Box 2) to create ‘service intensity’ care package groups [i.e. basic care (none or one service), intermediate care (two or three services), advanced care (four or more services)], which allowed us to use all the data. Effectiveness analysis, through the multivariate models, therefore examined predicted outcomes for each of the intermediate and advanced groups compared with a reference group of basic care.

BOX 2 - Dementia-specific services used to create care package ‘intensity’ groups for analysis

• Home care (domiciliary care).

• Community mental health nurse.

• Dementia support worker.

• Day/respite care.

• Social worker or case manager.

• Occupational therapist.

• Admiral Nurse.

• Home-delivered meals.

Services chosen from indicators in the national survey (see Workstream 1, Survey of current provision in England) and after discussion with our PPCI group on the services delivered to people with dementia/their carers at different stages.

Figure 3 shows the range of areas (local authority boundaries) where we recruited participants. We recruited and interviewed in collaboration with CRN research teams in each area. The sample eventually recruited exemplified the breadth of different service arrangements from the NHS, social care and independent agencies that formed the basis of naturally occurring home support models.

FIGURE 3.

Locations of participating recruitment sites.

Table 4 shows descriptive data for each care package group at baseline. Results of post hoc tests revealed that carers receiving basic intensity care packages were older and that they and their families received more home care visits. Differences in outcome measures at baseline indicated that those receiving advanced intensity packages were more dependent in ADL (BADLS) and their carers experienced more psychiatric symptoms (GHQ-12). Those receiving basic packages were more cognitively able.

TABLE 4 - Baseline characteristics by care package group

PwD, person with dementia.

Characteristic	Basic care (N = 154)	Intermediate care (N = 268)	Advanced care (N = 96)	Post hoc test
PwD: age (years), mean (SD)	80.49 (7.19)	80.86 (7.74)	78.95 (8.07)	p = 0.10
PwD: sex, n (%)				p = 0.86
Male	71 (46.1)	126 (47.0)	42 (43.8)
Female	83 (53.9)	142 (53.0)	54 (56.3)
PwD: ethnicity, n (%)				p = 0.69
White	147 (95.4)	257 (97.1)	91 (94.7)
Mixed/multiple ethnic groups	0 (0.0)	1 (0.4)	1 (1.0)
Asian/Asian British	4 (2.5)	4 (1.6)	1 (1.0)
Black/African/Caribbean/black British	3 (1.9)	3 (1.1)	3 (3.1)
PwD: marital status, n (%)				p = 0.64
Single	2 (1.3)	7 (2.6)	3 (3.2)
Married/cohabiting	108 (71.1)	166 (62.2)	58 (61.1)
Separated	4 (2.6)	9 (3.4)	3 (3.2)
Divorced	0 (0.0)	2 (0.7)	0 (0.0)
Widowed	38 (25.0)	83 (31.1)	31 (32.6)
Carer: age (years), mean (SD)	69.37 (11.2)	66.15 (12.0)	66.78 (11.0)	p = 0.02
Carer: sex, n (%)				p = 0.46
Male	48 (31.2)	69 (25.7)	25 (26.0)
Female	106 (68.8)	199 (74.3)	71 (74.0)
Carer: ethnicity, n (%)				p = 0.74
White	147 (95.4)	258 (96.3)	92 (95.8)
Mixed/multiple ethnic groups	0 (0.0)	0 (0.0)	0 (0.0)
Asian/Asian British	4 (2.5)	7 (2.6)	1 (1.0)
Black/African/Caribbean/black British	3 (1.9)	3 (1.1)	3 (3.1)
Carer: marital status, n (%)				p = 0.46
Single	7 (4.6)	24 (9.0)	9 (9.4)
Married/cohabiting	130 (85.0)	223 (83.5)	80 (83.3)
Separated	14 (9.2)	13 (4.9)	5 (5.2)
Divorced	0 (0.0)	2 (0.7)	1 (1.0)
Widowed	2 (1.3)	5 (1.9)	1 (1.0)
Carer relationship to PwD, n (%)				p = 0.550
Spouse/partner	98 (63.6)	150 (56.0)	56 (58.3)
Grandchild	0 (0.0)	4 (1.5)	0 (0.0)
Son/daughter	50 (32.5)	100 (37.3)	33 (34.4)
Brother/sister	0 (0.0)	1 (0.4)	1 (1.0)
Other relative	3 (1.9)	8 (3.0)	2 (2.1)
Friend	2 (1.3)	2 (0.7)	3 (3.1)
Other	1 (0.6)	3 (1.1)	1 (1.0)
Number of home care visits (previous 6 months), mean (SD)	326.1 (242.3)	311.8 (246.9)	229.4 (220.7)	p = 0.04
Duration of home care visits in hours (previous 6 months), mean (SD)	1.06 (.85)	1.29 (1.80)	1.34 (2.87)	p = 0.82
Informal care in hours (previous 6 months), mean (SD)	386.0 (723.8)	546.2 (825.4)	622.6 (838.6)	p = 0.05
Service mix scores, mean (SD)	9.16 (3.46)	9.24 (3.29)	9.85 (2.80)	p = 0.21
PwD: place of residence at baseline, n (%)				p = 0.29
Living with carer	98 (63.6)	157 (58.6)	61 (63.5)
Living in own home with relative	22 (14.3)	44 (16.4)	9 (9.4)
Living in own home alone	30 (19.5)	50 (18.7)	21 (21.9)
Supported accommodation (e.g. sheltered)	3 (1.9)	17 (6.3)	5 (5.2)
Other	1 (0.6)	0 (0.0)	0 (0.0)
BADLS score, mean (SD)	23.17 (12.71)	31.02 (12.86)	32.35 (11.48)	p < 0.001
PwD: DEMQOL score, mean (SD)	89.70 (11.24)	88.10 (11.63)	88.11 (11.87)	p = 0.57
S-MMSE score, mean (SD)	18.11 (7.19)	15.74 (6.87)	16.20 (6.29)	p = 0.03
Carer: GHQ-12, mean (SD)	3.19 (310)	3.97 (3.34)	5.06 (3.39)	p < 0.001

Table 5 shows a breakdown of the number of participants (people with dementia or carers) receiving each dementia-specific service at baseline. Each care package group combined these services in different ways. There was a rich mix of services belonging to each care package, with the difference being the intensity with which these were combined.

TABLE 5 - Care package group composition at baseline

Service type	Basic care (N = 154), n	Intermediate care (N = 268), n	Advanced care (N = 96), n
Home care	31	141	75
Community mental health nurse	22	103	59
Dementia support worker	22	86	54
Day/respite care	22	138	75
Social worker or case manager	12	112	76
Occupational therapist	6	40	47
Admiral Nurse	1	5	9
Home-delivered meals	1	20	11

At baseline, the dementia-specific services provided several components of care (Table 6). Descriptions of components, drawn from our evidence synthesis, were included in the research interview questionnaire. Participants identified a range of components that were received across all care package groups. From our evidence synthesis (see Appendix 2), all components were received, with the exception of behaviour management directed at the person with dementia. Daily living assistance and care co-ordination were frequently described components across all groups.

TABLE 6 - Baseline component frequencies for each care package intensity group

Drawn from those identified in the evidence synthesis (see Appendix 2).

Notes

Figures are number of participants who signalled that they received a particular component. Some participants did not answer questions relating to service components and therefore there are missing data. Participants could signal more than one component for each service.

Componenta	Basic care (none or one service), n	Intermediate care (two or three services), n	Advanced care (four or more services), n
Person with dementia
Daily living assistance
Personal care	25	125	63
Meal preparation	14	63	30
Nutrition	9	27	12
Emotional support	3	15	9
Care co-ordination	11	133	104
Sensory enhancement	3	13	3
Cognitive training/support	8	22	10
Physical activity	4	36	18
Environmental modifications	3	13	16
Carer
Education/advice	33	153	94
Respite	4	44	19
Social support	5	31	22
Emotional support	4	37	29
Behaviour management	2	21	16

Table 7 shows the results of the multinomial logit model for predicting care package groups at baseline, creating propensity scores used in the final multivariate models. The coefficients indicate the change in logarithmic probability of getting a particular care package group compared with basic care. Looking at significant estimates, three variables stood out as predicting either intermediate or advanced care package receipt. In comparison with basic care, those who lived in more deprived areas (site deprivation score) had a lower probability of getting either care package, those more dependent in the ADL (BADLS) had a greater probability of receiving either package, and those participants living in local authorities with higher expenditure on home care had a greater probability of receiving either package. As shown by the pseudo-R² (0.13), the model explained 13% of the variance in care package receipt.

TABLE 7 - Propensity scores: model for the probability of receiving a particular care package type (vs. basic care) at baseline

LR, likelihood ratio; SE, standard error.

Note

Model = multinomial logit model.

Care package group	Independent variable	β	SE	p-value	95% CI
Intermediate care	Site service mix scores	–0.05	0.040	0.17	0.89 to 1.02
	Informal care (hours per week)	–0.001	0.004	0.85	0.99 to 1.01
	Site deprivation score	–0.04	0.01	0.01	0.93 to 0.99
	Living alone	–0.04	0.27	0.87	0.56 to 1.638
	BADLS scores (ADL)	0.05	0.01	< .001	1.033 to 1.072
	Site community home care expenditure	0.00	0.00	0.008	1.000 to 1.000
	Constant	0.03	0.58	0.95
Propensity score ‘intermediate care’ (mean/SD)				0.52 (0.10)
Advanced care	Site service mix scores	0.01	0.05	0.82	0.92 to 1.112
	Informal care (hours per week)	0.00	0.005	0.924	0.99 to 1.010
	Site deprivation score	–0.04	0.02	0.04	0.92 to 0.99
	Living alone	–0.29	0.34	0.39	0.38 to 1.454
	BADLS scores (ADL)	0.06	0.01	< .001	1.035 to 1.085
	Site community home care expenditure	0.000	0.000	0.02	1.000 to 1.000
	Constant	–1.844	0.76	0.01
Propensity score ‘advanced care’ (mean/SD)				0.19 (0.06)
Model fit	Log-likelihood			976.02
	χ2 LR/p > χ2			60.347
	Pseudo-R2 (Nagelkerke)			0.13

Tables 8–11 show the results of the predicated outcomes from the multivariate models. These tables describe the influence of each of the intermediate and advanced care packages on outcomes, controlling for several other variables, including propensity scores.

TABLE 8 - Outcomes: regression model for ADL (BADLS)

SE, standard error.

Notes

Model = linear mixed model fitted adjusted by these covariates as fixed effects, owing to repeated measures over time and possibility that care packages were not independent.

Model fit Akaike information criterion = 1259.8.

Independent variable	β	SE	p-value	95% CI
Age	0.07	0.06	0.28	–0.003 to 0.002
Sex (0 = female, 1 = male)	1.229	1.148	.286	–1.036 to 3.495
Duration of care visits in hours (previous 6 months)	–0.001	0.001	0.641	–0.003 to 0.002
Care package type
Intermediate care	0.316	1.412	0.823	–2.471 to 3.103
Advanced care	2.463	1.611	0.128	–0.716 to 5.642
Propensity scores
Intermediate care	–11.704	7.432	0.117	–26.369 to 2.961
Advanced care	–24.747	11.132	0.027	–46.711 to –2.782
Intercept	8.315	6.815	0.224	–5.133 to 21.762
n	189

TABLE 9 - Outcomes: regression model for quality of life (DEMQOL proxy)

SE, standard error.

Notes

Model = linear mixed model fitted adjusted by these covariates as fixed effects, owing to repeated measures over time and possibility that care packages were not independent.

Model fit Akaike information criterion = 1342.9.

Independent variable	β	SE	p-value	95% CI
Age	0.034	0.127	0.789	–0.216 to 0.284
Sex (0 = female, 1 = male)	1.358	2.273	0.551	–3.130 to 5.846
Duration of care visits in hours (previous 6 months)	–7.134	0.003	0.977	–0.005 to 0.005
Care package type
Intermediate care	–2.209	2.752	0.423	–7.642 to 3.225
Advanced care	–0.242	3.217	0.940	–6.596 to 6.111
Propensity scores
Intermediate care	2.405	14.463	0.868	–26.154 to 30.964
Advanced care	5.245	21.991	0.812	–38.179 to 48.670
Intercept	–2.246	13.171	0.865	–28.254 to 23.763
n	171

TABLE 10 - Outcomes: regression model for carer competence (SSCQ)

SE, standard error.

Notes

Model = linear mixed model fitted adjusted by these covariates as fixed effects, owing to repeated measures over time and possibility that care packages were not independent.

Model fit Akaike information criterion = 701.8.

Independent variable	β	SE	p-value	95% CI
Age	0.020	0.017	0.234	–0.013 to 0.052
Sex (0 = female, 1 = male)	0.300	0.290	0.303	–0.273 to 0.873
Duration of care visits in hours (previous 6 months)	< –0.001	< 0.001	0.424	–0.001 to < 0.001
Care package type
Intermediate care	0.063	0.348	0.857	–0.625 to 0.751
Advanced care	0.415	0.400	0.302	–0.375 to 1.205
Propensity scores
Intermediate care	1.895	1.866	0.311	–1.788 to 5.578
Advanced care	–0.472	2.735	0.863	–5.870 to 4.927
Intercept	–2.665	1.737	0.127	–6.094 to 0.764
n	178

TABLE 11 - Outcomes: regression model for destinational outcome (place of residence) at 12 months

LR, likelihood ratio; SE, standard error.

Model = binary logistic regression model (0 = not at home; living at home = 1).

Model fit, –2 log-likelihood = 197.3.

Hosmer and Lemeshow test, χ² = 9.47; p = 0.30.

Independent variable	β	SE	Exp(β)	p-value	95% CI
Age	–0.030	0.022	0.97	0.176	0.929 to 1.014
Sex (0 = female, 1 = male)	0.105	0.379	1.11	0.782	0.528 to 2.332
Duration of home care visits in hours (previous 6 months)	0.002	0.001	1.00	0.018	1.000 to 1.004
Care package type
Intermediate care	–0.43	0.506	0.65	0.396	0.241 to 1.754
Advanced care	–1.09	0.548	0.33	0.046	0.114 to 0.981
Propensity scores
Intermediate care	0.823	2.596	2.28	0.751	0.014 to 369.2
Advanced care	3.711	3.830	40.89	0.333	0.022 to 74467.6
Constant	1.950	2.308	7.03	0.398
Pseudo-R2	0.151
N	172
χ2 LR/p > χ2	9.476

The regression coefficients reveal no significant effects for participants receiving either advanced or intermediate care packages on the primary outcome (i.e. BADLS) or secondary outcomes. There was a significant coefficient for the advanced care propensity score on BADLS. However, for destination at 12 months, there were significant predictors for number of home care visits and advanced care at baseline. Participants with more home care visits were more likely to be living at home at 12 months. Those receiving advanced care were less likely to be living at home at 12 months.

Owing to multiple error terms, linear mixed models do not routinely produce R² statistics to estimate the degree of variance explained. We used the approach of Nakagawa and Schielzeth,215 implemented in the R package ‘MuMIn’ (The R Foundation for Statistical Computing, Vienna, Austria), to produce marginal R² estimates from these models. These R² values were 0.11 for BADLS, 0.003 for DEMQOL and 0.02 for SSCQ. Comparing models without and with propensity scores showed that including propensity scores increased the explained variance, apart from for DEMQOL (BALDS from 0.03 to 0.11, DEMQOL from 0.004 to 0.003 and SSCQ from 0.01 to 0.02).

Sensitivity analysis that examined changes in care packages showed that there were changes in membership between baseline and follow-up (Table 12). A total of 171 (44%) participants changed (most to lower intensity packages). There were, however, 218 (56%) participants who received the same intensity package at follow-up. However, there were no outcome differences between those with the same, with higher or with lower intensity packages for DEMQOL (analysis of variance; p = 0.73), SSCQ (analysis of variance; p = 0.13), BADLS (analysis of variance; p = 0.73) or destination (chi-square 4.63; p = 0.09).

TABLE 12 - Sensitivity analysis: number of participants changing care package membership between baseline and 6-month follow-up

Pearson chi-square = 75.39; p < 0.001.

Care package intensity	Care package intensity, follow-up, n			Total, n
	Basic	Intermediate	Advanced
Basic	19	35	14	68
Intermediate	27	111	58	196
Advanced	5	32	88	125
Totals	51	178	160	389

Conclusions

We examined, naturalistically, the effects of different intensity care packages on outcomes for people with later-stage dementia and their carers. This was accomplished using multivariate models with propensity scores used to control for confounding. Using propensity scores in models explained greater variance than those without, apart from for DEMQOL. The variance explained was low. However, models were specified a priori to avoid data mining.

The study generated a large and comprehensive data set. A complex mix of services characterised support received by participants across 17 areas of England. We found no significant effects for either intermediate or advanced care packages on the primary or most secondary outcomes. However, there were significant findings for destination at 12 months (i.e. those with more home care visits were more likely, and those receiving advanced care were less likely, to be living at home at 12 months). These findings raise interesting issues of targeting. A primary aim of home care is to enable people to have a greater chance of remaining at home, but more intense support, in terms of a greater mix of services, tends to be delivered to those more vulnerable. Scores at baseline confirmed this, with more intense care packages being received by participants at greater dependency who were receiving more hours of support from their informal carers. These participants are at greater risk of entering care homes or hospital care. We provided new evidence of home support and its potential effects in this frail population.

Appendix 8 Toolkit design and development

A challenge of this programme was to disseminate research findings in a manner useful for commissioners and providers. This is a complex process and academic findings do not necessarily affect commissioning decisions directly. Rather, local knowledge is used to inform service development. 216,217 Often, commissioning and service decisions are made using information from professional relationships, personal experience, best practice examples, internal data and strategy/policy directives. 218–220 The commissioning and policy-making context is also fast-paced, with changing priorities, which often does not fit with academic research contexts. Especially in the social care setting, most of the behaviour change methods associated with knowledge transfer have been intuitive or educational, including printed materials, audio and feedback. 221 We developed the toolkit within this context.

Development was facilitated by the use of the SITE concept that is used elsewhere in the programme. 30,135 We derived the toolkit presentation from the work of Goertz192 who proposed a three-level structure, with a basic, secondary and indicator level. The basic level is the central theoretical aspect of a concept, for example democracy. The secondary level then gives the constitutive dimensions of the basic level. For example, one secondary dimension of democracy would be competitive elections. The indicator level then operationalises the theoretical aspects of a concept by giving suitable data to analyse it.

The advantages in using this structure were as follows.

• It describes how to build and thereby define concepts for audiences, articulated as attributes. This was of use in presenting research evidence for non-academic audiences.

• Each domain consists of a number of attributes, which were operationalised by indicators relevant to supporting people with dementia at home. We used elements of each of three levels of the concept in presenting findings for the toolkit.

• It permits the extension of coverage by changing the structure of attributes. We extended the SITE concept to include additional aspects of home support, for example health promotion.

For programme findings to be of most use to commissioners and providers, the toolkit should be relevant to policy guidance. We created a database with existing guidance and policy on home support for older people. Documents included were government guidance from England, Wales and Scotland and non-academic reports since 2010. The latter included reports from statutory bodies and non-government organisations from which we extracted information. Documents were found through a number of search strategies:

• a Google search (Google Inc., Mountain View, CA, USA) of ‘home support older people’, ‘home support older people guidelines’, ‘dementia guidelines’, ‘dementia home support’ and ‘domiciliary care older people’

• a search of relevant websites, including those of NICE and Social Care Institute for Excellence, for ‘dementia’, ‘homecare’, ‘assistive technology’, ‘respite care’, ‘day care’ and ‘carers’

• a hand-search of previous literature reviews for relevant policy documents and guidelines.

Initially, the title, contents page and executive summaries documents were read and judgements made on whether or not they were worth interrogating further. These documents were downloaded, saved and the relevant date accessed through a data extraction tool. To extract relevant data, SITE attributes were used as data extraction points. Each attribute had a string of search terms that were used to search the document (Table 13).

We also undertook a website review with assistance from the University of Manchester’s Web Team. The purpose of this was to identify feasible and effective webpage design and structure by which to present the toolkit. Sites reviewed included research institutes at the University of Manchester, organisations presenting research to lay audiences (e.g. The King’s Fund website) and other publicly available toolkits. From this, the use of visual cues, links, navigation bars and images were highlighted.

The design of the toolkit involved (1) the appraisal of the quality of the publications from the programme, (2) a consultation with stakeholders about the nature and (3) presentation of the findings and extraction of key findings.

The research questions were as follows:

• How are these research findings best communicated to stakeholders, commissioners, providers and policy-makers?

• What findings from the programme are most useful in service re-design?

To appraise the quality of the programme publications from which data for the toolkit were extracted, we used a research typology developed by Turner-Stokes et al. 222 This was selected as a ‘simple assessment of both qualitative and quantitative research evidence in terms of design, quality and applicability, and is practical for use by clinicians’. 222 Each paper was classified using the typology’s three main criteria: (1) design, (2) quality rating and (3) applicability. Overall, research papers were of high quality.

To inform the development of the toolkit, we conducted a stakeholder consultation exercise. We recruited participants from two NHS trusts and a senior government advisor (see Acknowledgements). Their views were obtained through a series of semistructured interviews. We elicited stakeholder views to:

• scope the knowledge requirements of commissioners and providers

• identify the knowledge gap(s) that findings from the programme could address

• explore how the materials from the research findings might be presented to best effect.

Semistructured interviews were undertaken. The interviews used a schedule to provide direction, while allowing other issues of importance to interviewees to emerge (Box 3). In the context of home support for people with dementia, questions focused on:

• information currently used to commission services

• the source of this information

• additional information that might be useful

• the balance between data and interpretation of the findings.

Each interview lasted approximately 45 minutes and was audio-recorded and professionally transcribed. The interviews were read and summarised (see Box 4 for a summary of findings). From this, implications for the toolkit were derived following discussion in the research team (Table 14).

In the development of the modules within the toolkit, we made a distinction between findings relating to people with dementia and their carers and to the stage of dementia, wherever possible. For each module, a bespoke approach to data extraction was undertaken, which is summarised below.

Module 1: scoping the evidence

This module presented data from the systematic literature reviews. Nine potential approaches to home support for older people with dementia and their carers were identified (see Table 4 in Clarkson et al. 30). These approaches employed components in different ways. Using the findings from the stakeholder consultation, each was modified for the toolkit.

For each approach, preparation of the research findings comprised the following:

• Components of the interventions from the synthesis of home support interventions were aggregated and standardised.

• Descriptions of staffing were standardised, reflecting UK practice.

• Intervention outcomes were aggregated and standardised. These were grouped to reflect those relating to people with dementia and their carers (Table 15).

• The measure of effectiveness used to appraise the evidence base in the publication was replaced with an evaluation using the same research typology generated by Turner-Stokes et al. 222 This was also employed to appraise the quality of programme publications.

TABLE 15 - Outcome aggregation from module 1: systematic reviews

IADL, instrumental activities of daily living.

Notes

P1 to P2 = interventions for people with dementia.

C1 to C7 = carers interventions.

From table 4 in Clarkson et al. 30

Outcomea	First-level aggregation (cluster generalisation)	Second-level aggregation (influence on)
Physical health and functioning (C1); care recipient physical function (C3)	Physical health	Influence physical functioning of people with dementia
ADLs (person with dementia) (C1); ADLs (C2); ADLs (C7); IADLs/ADLs (P1)	ADLs
Affective symptoms (person with dementia); depression and anxiety (C4); depression and anxiety (C4); person with dementia mood (C6); person with dementia mood (C7)	People with dementia affective symptoms/mood	Influence on people with dementia emotional well-being and functioning
Quality of life of care recipient (C3); quality of life of care recipient (C4)	Quality of life of care recipient
Affective symptoms/mood (C1); caregiver’s self-efficacy/perceived stress (C1); carers’ sense of competence/well-being (C2); caregiver neuroticism (C2); caregiver well-being and mood (C3); caregiver skills/efficacy (C3); carer self-efficacy (C3); carer self-efficacy (C4); depression and anxiety of carer (C4); carer mood (C5); carer mood (C6); carer mood (P1)	Carers’ sense of competence/well-being	Influence on carer emotional well-being and functioning
Quality of life (C1); quality of life of carer (C4); carer quality of life (C5); carer quality of life (P1): carer quality of life (P2)	Quality of life of carer
Caregiver burden (C2); caregiver objective and subjective burden (C3); carer burden (C5); carer burden (C6); carer burden (C7); carer burden (P1); carer burden (P2)	Carer burden
Carer social support/social network (C2)	Social support/social network
Admissions to care home (C2); nursing home admission (C5); nursing home admission (C6); nursing home admission (P2)	Nursing home admission	Influence on likelihood of remaining at home
Time at community tenure (C4)	Time at community tenure
Dementia severity (person with dementia) (C2)	Dementia severity	Influence on dementia symptoms (people with dementia)
Frequency of repetitive verbalisation (C1)	Frequency of repetitive verbalisation
Behavioural problems (C1); behavioural problems (C2); care recipient problem behaviours (C3); behaviour (person with dementia) (C4); behaviour (C5); behaviour (C7); behaviour (P2)	Behaviour	Influence problem behaviours (people with dementia)
Potentially abusive behaviour by carer towards care recipient (C4)	Abusive behaviour by carer	Influence abusive behaviours by carer

In addition, for each approach, the toolkit included a time frame and an exemplar, from which indicative costs were developed.

• Exemplars, from the evidence synthesis, were selected from each of the nine approaches and described. For this, researchers used the following criteria: overall effectiveness rating, staff group, fidelity, location of study and real-world usefulness.

• Measures (minimum, average, maximum) of staff time involved within each approach were identified to give examples of the duration of interventions.

• Indicative costings were applied to the exemplar for each approach. A cost per case was calculated for each exemplar intervention, based on the amount of time spent by practitioners multiplied by their unit cost. 223 Estimates of travel and administrative time were collaboratively agreed by the project team and included in the calculation. Total costs for each intervention per case were calculated based on a notional caseload.

In Figure 4 we summarise one example of an approach that used components of home support in different ways: ‘education and advice, behaviour management and emotional support’.

FIGURE 4.

Description for toolkit: ‘education and advice, behaviour management and emotional support’.

Module 2: evaluating the service landscape

This module explored a means of describing services using indicators designed to differentiate between different health and social care dementia services in localities. Using our national survey results, we created indicators capturing variation in services.

Two published papers informed the module. 135,136 One provided a snapshot of NHS service provision in England through a cross-sectional survey conducted in 2015, achieving a response rate of 79%. 135 The second was similar in design, but focused on social care provision commissioned by local authorities in England. It was conducted in 2014/15 and achieved a response rate of 81%. 136 We presented these data in an accessible format for service commissioners and providers through:

• descriptions of indicators, reviewed against plain English guidelines for ease of access and understanding

• additional information provided from the survey papers to provide clearer and more complete service descriptions, where appropriate

• examples of the application of the survey data (Table 16 and Figure 5).

TABLE 16 - Indicators of variation in dementia services (n = 96 local authority areas)

Memory aids, condition advice/information, legal advice/information, signposting, relaxation techniques, safety in food preparation.

Managing challenging behaviour, ADLs, instrumental ADLs, monitor medication compliance, monitor risk.

Information, support, education, therapy.

Overnight, specifically for older people with dementia.

Sitting service in-home or day-care centre.

Note

Data are number of local authorities reporting positive responses on questions for each indicator.

Indicator	n (%)
Organisational characteristics
Old age mental health services jointly commissioned	65 (68)
Old age mental health services jointly provided	20 (21)
Service characteristics
Social worker	64 (67)
Generic support worker	46 (48)
Occupational therapist assistant	31 (32)
Admiral Nurse	16 (16)
Services provided by NHS (health care)
Early-stage dementia servicesa	70 (73)
Later-stage dementia servicesb	66 (69)
Support for carers of people with dementiac	48 (50)
Services funded by local authorities (social care)
Home care specialist for older people with dementia	25 (26)
Home care night-time	75 (78)
Specialist respite cared	88 (92)
Specialist day caree	86 (90)
Respite care, family placement	38 (40)
Hospital discharge services, specialist for older people with dementia	46 (48)
Assistive technologies, specialist for older people with dementia	77 (80)

FIGURE 5.

Distribution of service mix score by geographical areas (n = 96). Bold lines show quartile divisions. Score fits normal distribution: Kolmogorov–Smirnov test, 0.1546; p = 0.017.

For this module, these descriptions of services, used to define the indicators and the data from our surveys, were used in an infographic that outlined the variation in services potentially available in localities in England. The infographic also included output from our service mix score to provide a snapshot of the distribution of potential service availability across geographical areas of England (see Figure 5).

Module 3: bridging the memory gap

This module presented findings from DESCANT in a readily accessible format for consumption by service managers and commissioners. We created a description and infographic, which was based on a similar format presented for a dementia trial in the British Medical Journal. 224 Figure 6 shows the infographic from the toolkit summarising the main findings.

FIGURE 6.

Description for toolkit: DESCANT in early-stage dementia.

Module 4: maintaining well-being at home

This module presented findings from our observational study in later-stage dementia. The aim here was to present quite complex methods and findings in a readily accessible format. Figure 7 shows the infographic summarising the findings.

FIGURE 7.

Description for toolkit: observational study in later-stage dementia.

Module 5: preferences for care and support

This module explored the preferences of carers, people with early-stage dementia and professionals for services providing care and support at home. Their preferences were extracted from three papers. 161,170,173

The first two papers161,173 explored the preferences of carers and people with early-stage dementia through DCEs. This is a questionnaire that identified individual preferences for different aspects of a hypothetical intervention or service. It presented participants with a series of choices and asked them to select groups of attributes they preferred. The third paper170 used case vignettes to explore preferences for formal and informal care from carers and professionals. This comprised different professionals with backgrounds in health and social care, for example community psychiatric nurses and social workers.

Each DCE explored stated preferences from a list of seven attributes. 161,173 From both, only significant attributes were extracted as preferences.

The case vignette paper170 explored preferences for 23 potential services comprising both formal and informal care to support older people with dementia at home. The data extraction process was as follows:

• We grouped individual services using the broad attributes from the DCEs and SITE, supplemented by our own original descriptions (see Box 5 for an example). All subsequent extraction was based on these aggregations.

• From the results section,170 we excluded those services that were least recommended by staff and carers from the summary findings for the module.

• Using text in the results section, a judgement was made as to which services were recommended by carers, professionals or both groups.

BOX 5 - Example of grouping of services

Speech and language therapist for assistance and training.

Continence advisor for assistance and advice.

Dietitian for assistance and advice.

Nursing care, for example wound dressing.

↓

Access to community health services (e.g. continence advisor, speech therapist, dietitian, community nurse) available to the general population.

From these three papers,161,170,173 we formed separate lists of preferences for people with early-stage dementia and professionals. For carers, data were available from all three papers. 161,170,173 For people with early-stage dementia173 and professionals,170 data were available from one paper for each. The results, as presented in the toolkit, are shown in Figure 8.

FIGURE 8.

Preferences by stakeholder group.

Appendix 9 Analysis of costs to people with dementia and carers and their relationship to formal care

Appendix 10 Discrete choice experiments establishing the value of different components of support

Appendix 11 Cost-effectiveness impact of home support approaches

Results

We summarise our findings in each of early- and later-stage dementia.

Intervention in early-stage dementia

The primary analyses were undertaken on data from participants with imputed missing values and regression-based estimates of costs/QALYs.

Tables 17–19 show resource use, unit costs and differences between intervention and TAU arms for average costs and QALYs per participant, using different utility measures.

TABLE 17 - Number (%) of participants using services: comparison of TAU and intervention groups at baseline and follow-up

*p < 0.05.

A&E, accident and emergency; GP, general practitioner.

Chi-squared test.

Aids/equipment already received or held by participants in each group. Intervention group also received the DESCANT intervention, comprising package of memory aids and visits by a DSP at baseline.

Service used	Baseline period			Follow-up period
	TAU (N = 234), n (%)	Intervention groups (N = 234), n (%)	p-valuea	TAU (N = 229), n (%)	Intervention groups (N = 226), n (%)	p-valuea
Home care worker	35 (15.0)	40 (17.1)	0.61	35 (15.3)	40 (17.7)	0.53
Case/care manager	13 (5.6)	9 (3.8)	0.51	12 (5.3)	4 (9.0)	0.66
Social worker	22 (9.4)	21 (9.0)	1.00	8 (3.5)	18 (8.0)	0.05*
Dementia advice worker	48 (20.5)	32 (13.7)	0.07	24 (10.5)	26 (11.5)	0.77
DSP	39 (16.7)	42 (17.9)	0.81	26 (11.4)	39 (17.3)	0.08
Support worker	16 (6.8)	13 (5.6)	0.70	17 (7.4)	20 (8.8)	0.61
Voluntary worker	48 (20.5)	53 (22.6)	0.65	60 (26.3)	52 (23.0)	0.45
Community mental health nurse	61 (26.1)	60 (25.6)	1.00	25 (10.9)	28 (12.4)	0.66
Community district nurse	29 (12.4)	31 (13.2)	0.89	30 (13.1)	24 (10.6)	0.47
GP	178 (76.1)	178 (76.1)	1.00	156 (68.1)	168 (74.3)	0.15
General practice nurse	109 (46.6)	114 (48.7)	0.71	125 (54.6)	122 (54.0)	0.93
Community pharmacist	66 (28.2)	61 (26.1)	0.68	82 (35.8)	97 (42.9)	0.13
Psychologist	12 (5.1)	8 (3.4)	0.49	11 (4.8)	13 (5.8)	0.40
Physiotherapist	33 (14.1)	25 (10.7)	0.33	37 (16.2)	34 (15.0)	0.80
Dietitian	7 (3.0)	3 (1.3)	0.34	3 (1.3)	5 (2.2)	0.36
Health visitor	0 (0.0)	1 (0.4)	1.00	0 (0.0)	4 (1.8)	0.06
Chiropodist	69 (29.5)	76 (32.5)	0.55	73 (31.9)	87 (38.5)	0.14
Benefits adviser	13 (5.6)	10 (4.3)	0.67	21 (9.2)	15 (6.6)	0.39
Short-term respite care	1 (0.4)	1 (0.4)	1.00	3 (1.3)	4 (1.8)	0.72
Transport	15 (6.4)	18 (7.7)	0.72	18 (7.9)	22 (9.7)	0.51
Drop-in centre	17 (7.3)	10 (4.3)	0.23	15 (6.6)	16 (7.1)	0.85
Day-care centre	10 (4.3)	10 (4.3)	1.00	0 (0.0)	1 (0.4)	0.50
All outpatient visits	164 (70.1)	167 (71.4)	0.84	145 (63.3)	151 (66.8)	0.49
All inpatient visits	22 (9.4)	36 (15.4)	0.07	29 (12.6)	38 (16.7)	0.24
Inpatient: A&E visit	16 (6.8)	16 (6.8)	1.00	10 (4.4)	16 (7.1)	0.23
Inpatient: general medical ward	7 (3.0)	21 (9.0)	0.01*	10 (4.4)	21 (9.3)	0.03*
Inpatient: geriatric ward	0 (0.0)	3 (1.3)	0.25	4 (1.7)	0 (0.0)	0.12
Inpatient: surgical ward	5 (2.1)	8 (3.4)	0.58	12 (5.2)	12 (5.3)	1.00
All aids and adaptations	148 (63.2)	151 (64.5)	0.85	106 (46.3)	61 (27.0)	0.00*
Adaptations	32 (13.7)	32 (13.7)	1.00	10 (4.4)	17 (7.5)	0.17
Equipment	125 (53.4)	131 (56.0)	0.64	101 (44.1)	49 (21.7)	0.00*
Technological aidsb	60 (26.5)	59 (25.5)	1.00	47 (20.5)	9 (4.0)	0.00*
Memory aid: clockb	44 (18.8)	45 (19.2)	1.00	61 (26.6)	2 (0.9)	0.00*
Memory aid: medication reminderb	81 (34.6)	75 (32.1)	0.62	89 (38.9)	0 (0.0)	0.00*

TABLE 18 - Unit costs (both trial and observational study)

GP, general practitioner; GPS, Global Positioning System; ICU, intensive care unit; WC, water closet.

Unit costs from previous versions of Unit Costs of Health and Social Care were updated in line with inflation.

Service	Costed as	Unit cost (£)	Sourcea
Social care related
Home care worker	Face-to-face contact, day time: independent sector care provided for social services	27/hour	Unit Cost of Health and Social Care 2018 181
Care/case manager	Social worker: client-related work, including qualifications	84/hour	Unit Cost of Health and Social Care 2018 (p. 139)181
Social worker	Client-related work, including qualifications	84/hour	Unit Cost of Health and Social Care 2018 181
Reablement	Reablement service, face-to-face contact	46/hour	Unit Cost of Health and Social Care 2018 181
Transportation	Voluntary day care for older people vehicle and transport costs	8.25/client day	Unit Cost of Health and Social Care 2009 226
Home delivered meals	Meals on Wheels, average cost	49.11/week	Unit Cost of Health and Social Care 2014 227
Short-term respite care in residential/nursing home	Establishment cost plus personal living expenses and external services	708/week	Unit Cost of Health and Social Care 2018 181
NHS/health related
Community mental health nurse	Nurse band 6: client-related work, including qualifications	81.50/hour	Unit Cost of Health and Social Care 2018 181
Occupational therapist	Community occupational therapist, including qualifications	47/hour	Unit Cost of Health and Social Care 2018 181
Community/district nurse	Nurse band 6: client-related work, including qualifications	81.50/hour	Unit Cost of Health and Social Care 2018 181
Speech therapist	Band 6, including qualifications	47.50/hour	Unit Cost of Health and Social Care 2018 181
Outpatient	Weighted average of all outpatient attendances	134/attendance	Unit Cost of Health and Social Care 2018 181
Psychologist	Band 7 clinical psychologist	53/hour	Unit Cost of Health and Social Care 2018 181
Physiotherapist	Band 6, including qualifications	49.40/hour	Unit Cost of Health and Social Care 2018 181
Chiropodist/podiatrist	Band 6	46/hour	Unit Cost of Health and Social Care 2018 181
Dietitian	Band 6, including qualifications	49.50/hour	Unit Cost of Health and Social Care 2018 181
Health visitor	Band 6, including qualifications	81.50/hour	Unit Cost of Health and Social Care 2018 181
Optician	Band 6	46/hour	Unit Cost of Health and Social Care 2018 181
Dentist	NHS dentist: performer only	133/hour	Unit Cost of Health and Social Care 2018 181
GP	Including qualifications	37/consultation	Unit Cost of Health and Social Care 2018 181
General practice nurse	Including qualifications	42/hour	Unit Cost of Health and Social Care 2018 181
Community pharmacist	Band 6, including qualifications	51.20/hour	Unit Cost of Health and Social Care 2018 181
Accident and emergency (ward admission)	Emergency medicine, average cost of admitted living patient	154/admittance	NHS Reference Costs 2017/18 225
Inpatient: psychologist	Inpatient, mental health – elderly	256/bed-day	Unit Cost of Health and Social Care 2010 228
Inpatient: geriatric	Inpatient, geriatric	221/bed-day	Unit Cost of Health and Social Care 2010 228
Inpatient: surgical ward	Inpatient, general surgery	110/bed-day	Unit Cost of Health and Social Care 2010 228
Inpatient: general medicine	Inpatient, general medicine	141/bed-day	Unit Cost of Health and Social Care 2010 228
Inpatient: cardiology	Inpatient, cardiology	119/bed-day	Unit Cost of Health and Social Care 2010 228
Inpatient: rehabilitation ward	Inpatient, rehabilitation	176/bed-day	Unit Cost of Health and Social Care 2010 228
Inpatient: ICU	All adult critical care (average)	1395/admittance	NHS Reference Costs 2017/18 225
Ambulance	Emergency ambulance, routine transport ambulance (average)	120/journey	Unit Cost of Health and Social Care 2018 181
Outpatient visit	Average cost per outpatient attendance	134/visit	Unit Cost of Health and Social Care 2018 181
Third sector
Benefits advisor (e.g. Citizens Advice Bureau)	Support and outreach worker	23/hour	Unit Cost of Health and Social Care 2018 181
Drop-in centre	Health action area community programme	37.70/client session	Unit Cost of Health and Social Care 2016 229
Day-care centre (including respite day care)	Local authority day care for older people (aged ≥ 65 years)	13/client hour	Unit Cost of Health and Social Care 2018 181
Carer group	Health action area community programme	37.70/client session	Unit Cost of Health and Social Care 2016 229
Admiral Nurse	Nurse band 6, client-related work, including qualifications	81.50/hour	Unit Cost of Health and Social Care 2018 181
Dementia advice worker	Support and outreach worker	23/hour	Unit Cost of Health and Social Care 2018 181
Counsellor	Band 6, including qualifications	51.40/hour	Unit Cost of Health and Social Care 2018 181
Voluntary organisation worker (e.g. Age UK, Alzheimer’s Society)	Support and outreach worker	23/hour	Unit Cost of Health and Social Care 2018 181
Support worker	Support and outreach worker	23/hour	Unit Cost of Health and Social Care 2018 181
Aids/adaptations
Accessible shower/wet room	Major adaptation materials and installation: level-access shower	5078	Unit Cost of Health and Social Care 2018 181
Converted room for downstairs WC/washroom	Major adaptation materials and installation: convert room downstairs for WC/washroom	10,761	Unit Cost of Health and Social Care 2018 181
Extension for downstairs WC/washroom	Major adaptation materials and installation: build downstairs extension for WC/washroom	24,635	Unit Cost of Health and Social Care 2018 181
Extension bedroom and bathroom	Major adaptation materials and installation: build downstairs extension for bedroom and en suite	36,729	Unit Cost of Health and Social Care 2018 181
Shower over bath	Minor adaptation materials and installation: over bath shower	1394	Unit Cost of Health and Social Care 2018 181
Create ramp	Minor adaptation materials and installation: ramp to front/back door	657	Unit Cost of Health and Social Care 2018 181
Create step	Minor adaptation materials and installation: step to front/back door	775	Unit Cost of Health and Social Care 2018 181
Stair lift	Major adaptation materials and installation: stair lift, straight	2046	Unit Cost of Health and Social Care 2018 181
Modified doorways	Minor adaptation materials and installation: widen doorway for wheelchair access	323	Unit Cost of Health and Social Care 2018 181
Move bed downstairs/upstairs	Minor adaptation materials and installation: move bed to downstairs room	41	Unit Cost of Health and Social Care 2018 181
Commode	Simple aids for daily living: commode (minimum cost)	31.49	Unit Cost of Health and Social Care 2013 230
Toilet adaptations	Simple aids for daily living: toilet frame and seat	32.57	Unit Cost of Health and Social Care 2013 230
Handrail: bathroom	Minor adaptation material and installation: fit handrail to bath	22.60	Unit Cost of Health and Social Care 2018 181
Handrail: internal	Minor adaptation material and installation: fit handrail internal	33.90	Unit Cost of Health and Social Care 2018 181
Handrail: external	Minor adaptation material and installation: fit handrail internal	23.80	Unit Cost of Health and Social Care 2018 181
Wheelchair	NHS wheelchair (attendant powered) and maintenance	322.50	Unit Cost of Health and Social Care 2018 181
Bath step	Simple aids for daily living: bath step	21.47	Unit Cost of Health and Social Care 2013 230
Walking aid	Simple aids for daily living: walking stick (minimum cost)	23.89	Unit Cost of Health and Social Care 2013 230
Trolley	Simple aids for daily living: trolley	36.92	Unit Cost of Health and Social Care 2013 230
Perch stool	Simple aids for daily living: perching stool with arms and or back	24.97	Unit Cost of Health and Social Care 2013 230
Bath/shower seat	Simple aids for daily living: mobile shower chair	59.72	Unit Cost of Health and Social Care 2013 230
Specialist chair	Simple aids for daily living: high-back chair/specialist chair	131.38	Unit Cost of Health and Social Care 2013 230
Electronic/hospital bed	Variable posture bed (minimum)	679.71	Unit Cost of Health and Social Care 2013 230
Riser recliner/electronic chair	Indiana rise and recline chair	399.95	Complete Care Shop235
Bed rail	Economy bed grab rail	14.95	Complete Care Shop236
Key box	Key safe	15.49	Complete Care Shop237
Hoist: mobile	Oxford midi 180 mobile hoist	939	Complete Care Shop238
Hoist: ceiling	Major adaptation materials and installation: stair lift, straight	2046	Unit Cost of Health and Social Care 2018 181
Hoist: bath	Minor adaptation materials and installation: standard bath lift (minimum cost)	329	Unit Cost of Health and Social Care 2013 230
Turner	Atlas transfer disc	178.45	Complete Care Shop239
Medication box/reminder	Medelert automatic pill dispenser	62.95	Complete Care Shop240
Incontinence pads/sheets	Incontinence pads 144 pack (six packs)	113.70/6 months	Complete Care Shop241
Support pillow/sheets	V-shaped pillow	16.25	Complete Care Shop242
Air-flow mattress/blow up bed	Apollo 5 airflow mattress	293.95	Complete Care Shop243
Pressure mattress	Essential care pressure mattress	84.95	Complete Care Shop244
Pressure cushion/pad	Medium-risk chair pressure cushion	31.45	Complete Care Shop245
Slide sheet	One-way slide sheet	104.95	Complete Care Shop246
Fall mat	Crash matt	37.95	Complete Care Shop247
Inflatable bed support	Mattress genie	146.95	Complete Care Shop248
Mangar elk	Lifting cushions	1148.95	Complete Care Shop249
Table	Trolley	36.92	Unit Cost of Health and Social Care 2013 230
Scooter	Wheelchair (electric), equipment and maintenance	1592.5	Unit Cost of Health and Social Care 2018 181
Footstool	Leg and footstool	31.45	Complete Care Shop250
Technology
Telecare, personal alarm with networked sensors/alarms	Second-generation telecare, equipment and support	660.16	Unit Cost of Health and Social Care 2013 230
Telecare, personal alarm without networked sensors/alarms	First-generation telecare, installation and materials	428.04	Unit Cost of Health and Social Care 2012 251
Light sensor	Automated lights	12.54	Complete Care Shop252
Date/time aid	Dementia day and night clock	31.43	Complete Care Shop253
Accessible telephone	Big button telephone	25.14	Complete Care Shop254
Tracking device	GPS locator	70.00	Live Better With Dementia255
DESCANT intervention	DSP: band 6 NHS practitioner (at rate of £26.63 per hour assisting for 10 hours per participant, including travel time) plus e-mail/telephone support (band 3; £12.93 per hour at 4 hours per participant); records, photocopying/transfer of documents DSP travel allowance to appointments [assumption of 24 miles per home visit (two home visits) at 56p per mile] Plus a package of memory aids at £150 per participant	464.90	Agreed NHS excess treatment costs with each local CRN

TABLE 19 - Early-stage dementia: average costs/QALYs, between-group differences

SE, standard error.

Notes

Primary analyses on data from participants with imputed missing values (n = 468) and regression-based estimates of costs/QALYs.

Independent variables in cost regression model (generalised linear model, gamma with log-link): allocation group, person with dementia age, person with dementia acetylcholinesterase inhibitors medication use, person with dementia lives with carer, carer BADLS and total cost visit 1.

Independent variables in QALY regression model (generalised linear model, Gaussian with identity link): allocation group, person with dementia age, person with dementia antidepressant use, S-MMSE visit 1, days since diagnosis, EQ-5D-5L visit 1, carer BADLS, ICECAP-O visit 1, DEMQOL visit 1.

Costs include public costs of NHS, social care and third-sector services, and costs incurred by informal carers. Cost of DESCANT intervention itself = £464.90 per participant (intervention group).

Variable	Group	Mean	SE	95% CI
Total cost (£)	Comparator, TAU	37,775	2323	33,179 to 42,372
	Intervention	38,372	2123	34,191 to 42,554
QALY, EQ-5D-5L	Comparator, TAU	0.370	0.008	0.355 to 0.385
	Intervention	0.375	0.007	0.361 to 0.388
QALY carer: EQ-5D-5L	Comparator, TAU	0.605	0.005	0.595 to 0.614
	Intervention	0.608	0.004	0.599 to 0.616
QALY ICECAP-O	Comparator, TAU	0.204	0.007	0.191 to 0.217
	Intervention	0.212	0.007	0.199 to 0.226
QALY DEMQOL	Comparator, TAU	0.430	0.004	0.422 to 0.437
	Intervention	0.433	0.004	0.426 to 0.441

Results from the ICER analysis, based on different measures of utility (Table 20), show that the intervention was, on average, more costly but slightly more effective than TAU, necessitating consideration of ICER values against threshold values of WTP. The mean ICER for our primary analysis, using the EQ-5D-5L for the person with dementia, was £103,000 per QALY.

TABLE 20 - Cost-effectiveness analysis, incremental costs and QALYs between TAU and intervention

SE, standard error.

Note

Incremental values from bootstrapped analyses.

Observed bootstrap	Incremental cost or QALY, over comparator	SE	z-value	Normal based
				p > z	95% CI
Net cost (£)	412	2745	0	1	–4969 to 5792
Net QALY, EQ-5D-5L	0.004	0.005	0.730	0.466	–0.006 to 0.014
Net QALY carer, EQ-5D-5L	0.002	0.003	0.730	0.466	–0.004 to 0.009
Net QALY DEMQOL	0.003	0.004	0.640	0.523	–0.005 to 0.010
Net QALY ICECAP-O	0.009	0.006	1.650	0.100	–0.002 to 0.020

The bootstrapped results, allowing for uncertainty, showed that the intervention had a mean incremental cost (over TAU) of £412 (standard error £2745, 95% CI –£496 to £5792) and mean incremental QALYs of 0.004 (standard error 0.005, 95% CI –0.006 to 0.014).

The statistical uncertainty surrounding the costs, QALYs and incremental cost per QALYs are illustrated in Figures 9 and 10 (cost-effectiveness acceptability). These results show that the intervention is likely not to be cost-effective over a range of WTP thresholds. At our £15,000 threshold, the intervention has approximately 42–44% probability of being cost-effective, depending on the QALY values generated by our different preference measures. The different measures used to generate QALYs showed little variation in terms of the probability of cost-effectiveness with only the ICECAP-O showing a marginally higher probability.

FIGURE 9.

Early-stage dementia: base-case analysis (overall) ICERs – 10,000 bootstrapped replicates.

FIGURE 10.

Early-stage dementia: cost-effectiveness acceptability curves.

Naturally occurring care packages in later-stage dementia

The primary analyses were conducted on data from participants responding at both baseline and 6-month follow-up (n = 389), although for the EQ-5D-5L proxy there were three missing responses, meaning that data for 386 participants were analysed. Tables 21 and 22 compare resource use for each care package group.

TABLE 21 - Number (%) of participants using services: comparison of basic and intermediate intensity groups

*p < 0.05.

A&E, accident and emergency; GP, general practitioner; ICU, intensive care unit.

Chi-squared test.

Service used	Baseline period			Follow-up period
	Basic (N = 154), n (%)	Intermediate (N = 268), n (%)	p-valuea	Basic (N = 125), n (%)	Intermediate (N = 196), n (%)	p-valuea
Home care worker	33 (21.4)	153 (57.1)	0.00*	39 (31.2)	118 (60.2)	0.00*
Case/care manager	9 (5.8)	47 (17.5)	0.00*	10 (8.0)	26 (13.3)	0.20
Social worker	3 (1.9)	75 (28.0)	0.00*	12 (9.6)	48 (24.5)	0.00*
Dementia advice worker	4 (2.6)	8 (3.0)	1.00	1 (0.8)	5 (2.6)	0.41
Support worker	4 (2.6)	38 (14.2)	0.00*	5 (4.0)	22 (11.2)	0.02*
Voluntary worker	17 (11)	47 (17.5)	0.09	16 (12.8)	21 (10.7)	0.60
Community mental health nurse	22 (14.3)	98 (36.6)	0.00*	20 (16.0)	55 (28.1)	0.02*
Occupational therapist	6 (3.9)	39 (14.6)	0.00*	13 (10.4)	32 (16.3)	0.14
Admiral Nurse	1 (0.6)	5 (1.9)	0.42	2 (1.6)	5 (2.6)	0.71
Councillor	2 (1.3)	2 (0.7)	0.63	2 (1.6)	0 (0.0)	0.15
Community district nurse	23 (14.9)	75 (28.0)	0.00*	26 (20.8)	58 (29.6)	0.09
GP	136 (88.3)	239 (89.2)	0.87	111 (88.8)	174 (88.8)	1.00
General practice nurse	134 (87.0)	224 (83.6)	0.40	109 (87.2)	166 (84.7)	0.63
Community pharmacist	51 (33.1)	80 (29.9)	0.51	53 (42.4)	67 (34.2)	0.16
Speech and language therapist	1 (0.6)	5 (1.9)	0.42	4 (3.2)	3 (1.5)	0.44
Psychologist	7 (4.5)	6 (2.2)	0.24	6 (4.8)	0 (0.0)	0.00*
Physiotherapist	21 (13.6)	45 (16.8)	0.41	18 (14.4)	26 (13.3)	0.87
Dietitian	9 (5.8)	19 (7.1)	0.69	4 (3.2)	17 (8.7)	0.64
Health visitor	0 (0.00)	2 (0.7)	0.54	1 (0.8)	2 (1.0)	1.00
Chiropodist	78 (50.6)	144 (53.7)	0.55	69 (55.2)	107 (54.6)	1.00
Benefits adviser	7 (4.5)	16 (6.0)	0.66	5 (4.0)	10 (5.1)	0.79
Optician	13 (8.4)	11 (4.1)	0.08	7 (5.6)	5 (2.6)	0.23
Dentist	9 (5.8)	8 (3.0)	0.20	9 (7.2)	6 (3.1)	0.11
Meals on Wheels	1 (0.6)	20 (7.5)	0.00*	2 (1.6)	11 (5.6)	0.09
Short-term respite care	4 (2.6)	0 (0.0)	0.00*	4 (3.2)	32 (16.3)	0.00*
Transport	9 (5.8)	40 (14.9)	0.00*	3 (2.4)	26 (13.3)	0.00*
Carer group	67 (43.5)	70 (26.1)	0.00*	50 (40.0)	46 (23.5)	0.00*
Drop-in centre	18 (11.7)	15 (5.6)	0.04*	11 (8.8)	10 (5.1)	0.25
Day-care centre	21 (13.6)	119 (44.4)	0.00*	26 (20.8)	74 (37.8)	0.00*
All outpatient visits	119 (77.3)	198 (73.9)	0.49	93 (74.4)	132 (67.3)	0.21
All inpatient visits	27 (17.5)	74 (27.6)	0.02*	21 (16.8)	41 (20.9)	0.39
Inpatient: A&E visit	14 (9.1)	34 (12.7)	0.34	11 (8.8)	19 (9.7)	0.85
Inpatient: general medical ward	10 (6.5)	33 (12.3)	0.07	10 (8.0)	24 (12.2)	0.67
Inpatient: geriatric ward	3 (1.9)	15 (5.6)	0.08	5 (4.0)	6 (3.1)	0.76
Inpatient: surgical ward	5 (3.2)	11 (4.1)	0.79	3 (2.4)	5 (2.6)	1.00
Inpatient: psychiatric ward	0 (0.0)	1 (0.4)	1.00	1 (0.8)	3 (1.5)	1.00
Inpatient: cardiology ward	0 (0.0)	10 (3.7)	0.02*	1 (0.8)	3 (1.5)	1.00
Inpatient: ICU	0 (0.0)	2 (0.7)	0.54	0 (0.0)	2 (1.0)	0.52
Inpatient: rehabilitation	1 (0.6)	2 (0.7)	1.00	1 (0.8)	1 (0.5)	1.00
Ambulance	17 (11.0)	88 (32.8)	0.00*	29 (23.2)	60 (30.6)	0.16
All aids and adaptations	107 (69.5)	219 (81.7)	0.01*	44 (35.2)	78 (39.8)	0.48
Adaptations	41 (26.6)	104 (38.8)	0.01*	9 (7.2)	17 (8.7)	0.68
Equipment	98 (63.6)	204 (76.1)	0.01*	40 (32.0)	69 (35.2)	0.63
Technological aids	35 (22.7)	92 (34.3)	0.02*	12 (9.6)	14 (7.1)	0.53
Memory aid: clock	4 (2.6)	12 (4.5)	0.43	3 (1.9)	2 (0.7)	0.38
Memory aid: medication reminder	1 (0.6)	6 (2.2)	0.43	0 (0.0)	0 (0.0)

TABLE 22 - Number (%) of participants using services: comparison of basic and advanced intensity groups

*p < 0.05.

A&E, accident and emergency; GP, general practitioner; ICU, intensive care unit.

Chi-squared test.

Service used	Baseline period			Follow-up period
	Basic (N = 154), n (%)	Advanced (N = 96), n (%)	p-valuea	Basic (N = 125), n (%)	Advanced (N = 68), n (%)	p-valuea
Home care worker	33 (21.4)	81 (84.4)	0.00*	39 (31.2)	47 (69.1)	0.00*
Case/care manager	9 (5.8)	27 (28.1)	0.00*	10 (8.0)	15 (22.1)	0.01*
Social worker	3 (1.9)	64 (66.7)	0.00*	12 (9.6)	21 (30.9)	0.00*
Dementia advice worker	4 (2.6)	7 (7.3)	0.11	1 (0.8)	1 (1.5)	1.00
Support worker	4 (2.6)	19 (19.8)	0.00*	5 (4.0)	11 (16.2)	0.01*
Voluntary worker	17 (11)	32 (33.3)	0.00*	16 (12.8)	11 (16.2)	0.52
Community mental health nurse	22 (14.3)	58 (60.4)	0.00*	20 (16.0)	18 (26.5)	0.09
Occupational therapist	6 (3.9)	46 (47.9)	0.00*	13 (10.4)	11 (16.2)	0.26
Admiral Nurse	1 (0.6)	9 (9.4)	0.00*	2 (1.6)	6 (8.8)	0.02*
Councillor	2 (1.3)	4 (4.2)	0.21	2 (1.6)	3 (4.4)	0.35
Community district nurse	23 (14.9)	27 (28.1)	0.02*	26 (20.8)	17 (25.0)	0.59
GP	136 (88.3)	84 (87.5)	0.84	111 (88.8)	59 (86.8)	0.65
General practice nurse	134 (87.0)	80 (83.3)	0.46	109 (87.2)	56 (82.4)	0.40
Community pharmacist	51 (33.1)	33 (34.4)	0.89	53 (42.4)	27 (39.7)	0.76
Speech and language therapist	1 (0.6)	2 (2.1)	0.56	4 (3.2)	1 (1.5)	0.66
Psychologist	7 (4.5)	2 (2.1)	0.49	6 (4.8)	3 (4.4)	1.00
Physiotherapist	21 (13.6)	23 (24.0)	0.04*	18 (14.4)	16 (23.5)	0.12
Dietitian	9 (5.8)	9 (9.4)	0.32	4 (3.2)	4 (5.9)	0.46
Health visitor	0 (0.0)	1 (1.0)	0.38	1 (0.8)	0 (0.0)	1.00
Chiropodist	78 (50.6)	45 (46.9)	0.60	69 (55.2)	33 (48.5)	0.45
Benefits adviser	7 (4.5)	12 (12.5)	0.03*	5 (4.0)	4 (5.9)	0.72
Optician	13 (8.4)	6 (6.3)	0.63	7 (5.6)	5 (7.4)	0.76
Dentist	9 (5.8)	1 (1.0)	0.09	9 (7.2)	4 (5.9)	1.00
Meals on Wheels	1 (0.6)	11 (11.5)	0.00*	2 (1.6)	7 (10.3)	0.01*
Short-term respite care	4 (2.6)	32 (33.3)	0.00*	4 (3.2)	14 (20.6)	0.00*
Transport	9 (5.8)	16 (16.7)	0.01*	3 (2.4)	12 (17.6)	0.00*
Carer group	67 (43.5)	21 (21.9)	0.01*	50 (40.0)	15 (22.1)	0.02*
Drop-in centre	18 (11.7)	3 (3.1)	0.02*	11 (8.8)	4 (5.9)	0.58
Day-care centre	21 (13.6)	60 (62.5)	0.00*	26 (20.8)	33 (48.5)	0.00*
All outpatient visits	119 (77.3)	70 (72.9)	0.45	93 (74.4)	46 (67.6)	0.32
All inpatient visits	27 (17.5)	31 (32.3)	0.01*	21 (16.8)	24 (35.3)	0.01*
Inpatient: A&E visit	15 (9.7)	17 (17.7)	0.08	11 (8.8)	14 (20.6)	0.03*
Inpatient: general medical ward	10 (6.5)	17 (17.7)	0.01*	10 (8.0)	13 (19.1)	0.04*
Inpatient: geriatric ward	3 (1.9)	1 (1.0)	1.00	5 (4.0)	2 (2.9)	1.00
Inpatient: surgical ward	5 (3.2)	3 (3.1)	1.00	3 (2.4)	0 (0.0)	0.55
Inpatient: psychiatric ward	0 (0.0)	2 (2.1)	0.15	1 (0.8)	3 (4.4)	0.13
Inpatient: cardiology ward	0 (0.0)	1 (1.0)	0.38	1 (0.8)	1 (1.5)	1.00
Inpatient: ICU	0 (0.0)	2 (2.1)	0.15	0 (0.0)	0 (0.0)
Inpatient: rehabilitation	1 (0.6)	2 (2.1)	0.56	1 (0.8)	1 (1.5)	1.00
Ambulance	17 (11.0)	37 (38.5)	0.00*	29 (23.2)	30 (44.1)	0.00*
All aids and adaptations	107 (69.5)	78 (81.3)	0.05	44 (35.2)	29 (42.6)	0.35
Adaptations	41 (26.6)	26 (27.1)	1.00	9 (7.2)	7 (10.3)	0.59
Equipment	98 (63.6)	73 (76.0)	0.05*	40 (32.0)	23 (33.8)	0.87
Technological aids	35 (22.7)	38 (39.6)	0.01*	12 (9.6)	7 (10.3)	1.00
Memory aid: clock	4 (2.6)	1 (1.0)	0.65	3 (1.9)	0 (0.0)	0.55
Memory aid: medication reminder	1 (0.6)	2 (2.1)	0.56	0 (0.0)	0 (0.0)

Tables 23 and 24 show differences between care package groups for average costs per participant (carer–person with dementia dyad) from different perspectives.

TABLE 23 - Average costs per resource use category and differences between care package groups: NHS care

A&E, accident and emergency; GP, general practitioner; ICU, intensive care unit.

Cost item	Basic intensity (none or one service)		Intermediate intensity (two or three services)		Advanced intensity (four or more services)
	n	Mean (SD) (£)	n	Mean (SD) (£)	n	Mean (SD) (£)
Aids and adaptations	125	17 (108)	194	22 (117)	67	22 (132)
Community mental health nurse	125	74 (418)	194	106 (498)	67	54 (136)
Occupational therapist	125	6 (20)	194	10 (32)	67	26 (81)
Community district nurse	125	61 (242)	194	239 (1581)	67	149 (586)
Speech and language therapist	125	5 (37)	194	1 (6)	67	0 (1)
GP	125	332 (164)	194	322 (162)	67	347 (174)
General practice nurse	125	203 (104)	194	205 (102)	67	200 (109)
Pharmacy	125	35 (44)	194	28 (41)	67	34 (45)
Psychologist	125	3 (16)	194	0 (0)	67	2 (11)
Physiotherapist	125	7 (17)	194	6 (16)	67	12 (21)
Dietitian	125	2 (9)	194	5 (15)	67	3 (12)
Health visitor	125	1 (7)	194	1 (13)	67	0 (0)
Chiropodist	125	32 (32)	194	32 (33)	67	30 (34)
Optician	125	3 (15)	194	1 (9)	67	5 (18)
Dentist	125	14 (53)	194	5 (28)	67	10 (42)
All outpatient visits	125	328 (437)	194	323 (766)	67	276 (290)
A&E admittance	125	23 (88)	194	21 (75)	67	37 (85)
ICU inpatient stay	125	0 (0)	194	14 (141)	67	0 (0)
Inpatient general medical ward	125	96 (387)	194	412 (1831)	67	278 (861)
Psychiatric inpatient stay	125	43 (481)	194	96 (845)	67	928 (4365)
Geriatric inpatient stay	125	253 (1409)	194	133 (906)	67	231 (1709)
Surgical inpatient stay	125	33 (289)	194	15 (128)	67	0 (0)
Cardiology inpatient stay	125	8 (85)	194	21 (242)	67	9 (73)
Rehab inpatient stay	125	14 (157)	194	19 (265)	67	8 (65)
Total inpatient	125	499 (1871)	194	775 (2317)	67	1583 (4673)
Ambulance (emergency and routine)	125	42 (93)	194	88 (195)	67	116 (182)
Total NHS	125	1501 (2115)	194	2000 (3104)	67	2708 (4644)

TABLE 24 - Average costs per resource use category and differences between care package groups, social care, third sector and informal carer

Cost item	Basic intensity (none or one service)		Intermediate intensity (two or three services)		Advanced intensity (four or more services)
	n	Mean (SD) (£)	n	Mean (SD) (£)	n	Mean (SD) (£)
Social care perspective
Equipment	125	113 (646)	194	98 (453)	67	234 (885)
Home care	125	1829 (4287)	194	5488 (10,715)	67	5437 (9840)
Support worker	125	67 (559)	194	96 (500)	67	253 (879)
Case manager	125	6 (25)	194	33 (197)	67	42 (138)
Social worker	125	19 (79)	194	45 (149)	67	51 (101)
Day care	125	3 (6)	194	5 (6)	67	7 (7)
Meals	125	2 (17)	194	31 (216)	67	111 (572)
Respite care	125	16 (125)	194	302 (1241)	67	412 (1061)
Transport	125	12 (125)	194	91 (318)	67	107 (363)
Total social care	125	2067 (4352)	194	6190 (10,837)	67	6653 (10,165)
Third-sector perspective
Equipment	125	0 (4)	194	0 (3)	67	50 (270)
Admiral Nurse	125	7 (62)	194	3 (26)	67	18 (85)
Dementia advice worker	125	0 (1)	194	5 (60)	67	1 (11)
Councillor	125	4 (46)	194	0 (0)	67	16 (85)
Voluntary worker	125	63 (349)	194	79 (780)	67	83 (295)
Benefits adviser	125	1 (7)	194	1 (5)	67	2 (9)
Carer group	125	739 (1159)	194	362 (1023)	67	404 (1194)
Drop in	125	111 (450)	194	47 (285)	67	9 (57)
Total third sector	125	927 (1281)	194	498 (1335)	67	584 (1353)
Informal carer perspective
Informal carer time	125	62,772 (35,401)	194	65,802 (35,508)	67	60,903 (37,998)
Equipment	125	615 (3236)	194	512 (2915)	67	589 (3076)
Total informal care	125	63,388 (35,559)	194	66,315 (35,823)	67	61,492 (38,239)
Total all costs (societal)	125	67,882 (36,258)	194	75,003 (37,664)	67	71,438 (39,479)

Results from the ICER analysis, based on the EQ-5D-5L (Table 25), show that, overall, both intermediate and advanced care packages were, on average, more costly and less effective than basic care. From this perspective, both approaches were dominated by basic intensity care. This pattern was similar for social care.

TABLE 25 - Cost-effectiveness analysis using EQ-5D-5L QALYs: intermediate and advanced care packages vs. basic care

Perspective	Incremental costs (£)	Incremental effects (QALYs)	ICER (£/QALY)	Probability of approach being cost-effective for different threshold values of society’s WTP for a QALY
				£0	£15,000	£30,000
Overall societal
Intermediate care package	7121	–0.01	–712,100	0.04	0.04	0.03
Advanced care package	3556	–0.05	–71,120	0.26	0.24	0.19
NHS
Intermediate care package	500	–0.01	–50,000	0.04	0.02	0.02
Advanced care package	1208	–0.05	–24,160	0.01	0.00	0.00
Social care
Intermediate care package	4123	–0.01	–412,300	0.00	0.00	0.00
Advanced care package	4586	–0.05	–91,700	0.00	0.00	0.00
Third sector
Intermediate care package	–428	–0.01	42,800	1.00	0.82	0.50
Advanced care package	–342	–0.05	6560	0.96	0.09	0.05
Informal carer
Intermediate care package	2927	–0.01	–292,700	0.24	0.23	0.21
Advanced care package	–1895	–0.05	37,900	0.62	0.59	0.52

However, from a third-sector perspective, both intermediate and advanced intensity packages were less costly but less effective than basic care. Incremental cost per QALY gain for the intermediate package was £42,800 and for the advanced package it was £6560. The results from the informal carers’ perspective were mixed. Intermediate care packages were, on average, more costly and less effective (dominated), but advanced packages mirrored those of the third sector (i.e. they were less costly but also less effective).

The statistical uncertainty surrounding these estimates is illustrated in Figure 11 (bootstrapped analyses). From an overall perspective, most iterations are in the north-west quadrant (i.e. care packages are likely to be more expensive but less effective than basic care). Therefore, both intermediate and advanced care packages are unlikely to be cost-effective over a range of WTP thresholds (at our £15,000 threshold, intermediate care and advanced care packages have approximately 5% and 25% probability of being cost-effective, respectively).

FIGURE 11.

Later-stage dementia care packages: primary analysis (overall) ICERs – 10,000 bootstrapped replicates. (a) Intermediate vs. basic care; and (b) advanced vs. basic care.

From a third-sector perspective, cost-effectiveness reduced at higher thresholds for both packages. However, for intermediate care, the probability of cost-effectiveness was 84% at our £15,000 WTP threshold (Figure 12). For informal care, advanced care had a 59% probability of being cost-effective.

FIGURE 12.

Intermediate care package: third-sector perspective. (a) ICERs; and (b) cost-effectiveness acceptability curve.

In sensitivity analyses, using DEMQOL-generated utility values did not change the position of either care package on the cost-effectiveness plane or their probability of cost-effectiveness.

Appendix 12 Patient, public and carer involvement

List of abbreviations

ADL

activities of daily living

BADLS

Bristol Activities of Daily Living Scale

CI

confidence interval

CMHT

Community Mental Health Team

CRN

Clinical Research Network

CSRI

Client Service Receipt Inventory

DCE

discrete choice experiment

DEMQOL

Dementia Quality of Life

DESCANT

Dementia Early Stage Cognitive Aids New Trial

DMEC

Data Monitoring and Ethics Committee

DSP

dementia support practitioner

EQ-5D-5L

EuroQol-5 Dimensions, five-level version

GHQ-12

General Health Questionnaire-12 items

ICECAP-O

ICEpop CAPability measure for Older people

ICER

incremental cost-effectiveness ratio

LAP

Lay Advisory Panel

NICE

National Institute for Health and Care Excellence

NIHR

National Institute for Health Research

PPCI

patient, public and carer involvement

QALY

quality-adjusted life-year

RUD

Resource Utilisation in Dementia questionnaire

SAE

serious adverse event

SD

standard deviation

SITE

support, information, therapy or education

S-MMSE

Standardised Mini Mental State Examination

SSCQ

Short Sense of Competence Questionnaire

TAU

treatment as usual

TIDE

Together in Dementia Everyday

WTP

willingness to pay