Read the full case study for 'A coping programme for family carers of people with dementia: economic evidence' here (HTML)
Martin Knapp, Klara Lorenz, Adelina Comas-Herrera, Gill Livingston, Michela Tinelli, Danielle Guy 2019

• what dementia is and how it affects people
• carer stress, how to recognise it and techniques for managing it
• how to manage difficult behaviour
• how to access support that is available for people with dementia and family carers
• maintaining skills learned and planning for the future.

Read the full case study for 'Specialist nursing support (Admiral Nursing) for unpaid carers of people with dementia: economic evidence' here (HTML)

• Admiral Nursing provides important support to carers of people with dementia.
• Potential benefits of Admiral Nursing include improved carer quality of life and ability to continue caring for the person with dementia.
• It is likely that Admiral Nursing can be offered to people without increasing the costs of (other) social care and health care services.

More research is needed to understand potential costs and benefits of Admiral Nursing.

Read the full case study for 'Support for unpaid carers: economic evidence' here (PDF)
Nicola Brimblecombe, Martin Knapp, Michela Tinelli, Danielle Guy 2019

KEY POINTS

• For those who provide unpaid care, particularly at higher intensities, there is substantial evidence of negative effects on employment, health and wellbeing, with associated individual and societal costs.
• There are significant gaps in the evidence with regards to interventions to support carers, outcomes and types of caring situation studied, with a lack of evidence on cost-effectiveness and few evaluations of key recent policy initiatives.
• Evidence is strongest and most consistent for formal care services for people with care needs; flexible working conditions; psychological therapy, training and education interventions; and support groups. It may be that a combination of interventions is most effective.

A structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomised controlled trial and cost-effectiveness analysis
Forster A, et al Lancet, 382, 2069-2076. 2013

BACKGROUND:
Most patients who have had a stroke are dependent on informal caregivers for activities of daily living. The TRACS trial investigated a training programme for caregivers (the London Stroke Carers Training Course, LSCTC) on physical and psychological outcomes, including cost-effectiveness, for patients and caregivers after a disabling stroke.

METHODS:
We undertook a pragmatic, multicentre, cluster randomised controlled trial with a parallel cost-effectiveness analysis. Stroke units were eligible if four of five criteria used to define a stroke unit were met, a substantial number of patients on the unit had a diagnosis of stroke, staff were able to deliver the LSCTC, and most patients were discharged to a permanent place of residence. Stroke units were randomly assigned to either LSCTC or usual care (control group), stratified by geographical region and quality of care, and using blocks of size 2. Patients with a diagnosis of stroke, likely to return home with residual disability and with a caregiver providing support were eligible. The primary outcome for patients was self-reported extended activities of daily living at 6 months, measured with the Nottingham Extended Activities of Daily Living (NEADL) scale. The primary outcome for caregivers was self-reported burden at 6 months, measured with the caregivers burden scale (CBS). We combined patient and caregiver costs with primary outcomes and quality-adjusted life-years (QALYs) to assess cost-effectiveness. This trial is registered with controlled-trials.com, number ISRCTN 49208824.

FINDINGS:
We assessed 49 stroke units for eligibility, of which 36 were randomly assigned to either the intervention group or the control group. Between Feb 27, 2008, and Feb 9, 2010, 928 patient and caregiver dyads were registered, of which 450 were in the intervention group, and 478 in the control group. Patients’ self-reported extended activities of daily living did not differ between groups at 6 months (adjusted mean NEADL score 27·4 in the intervention group versus 27·6 in the control group, difference -0·2 points [95% CI -3·0 to 2·5], p value=0·866, ICC=0·027). The caregiver burden scale did not differ between groups either (adjusted mean CBS 45·5 in the intervention group versus 45·0 in the control group, difference 0·5 points [95% CI -1·7 to 2·7], p value=0·660, ICC=0·013). Patient and caregiver costs were similar in both groups (length of the initial stroke admission and associated costs were £13,127 for the intervention group and £12,471 for the control group; adjusted mean difference £1243 [95% CI -1533 to 4019]; p value=0·380). Probabilities of cost-effectiveness based on QALYs were low.

INTERPRETATION:
In a large scale, robust evaluation, results from this study have shown no differences between the LSCTC and usual care on any of the assessed outcomes. The immediate period after stroke might not be the ideal time to deliver structured caregiver training.

FUNDING:
Medical Research Council.

An Independent Review of Shared Lives for Older People and People Living with Dementia
PPL, Cordis Bright, Social Finance PPL, London. 2018

Shared Lives is based around a Shared Lives carer sharing their home with an adult in need of care, to encourage meaningful relationships, independent living skills and community integration. This review explores how Shared Lives’ respite service for older people and people with dementia compare to ‘traditional’ forms of care for across three areas: outcomes for service users, carer and care commissioners; direct care costs to commissioners; and impact on the broader health system, such as a reduced usage. The review found that Shared Lives model provides positive outcomes for both service users and carers. It found that Shared Lives arrangements were able to reduce social isolation experience by carers and help increase their general wellbeing. Shared Lives also resulted in increased independence, wellbeing and choice for service users. In addition, the study found that the costs Shared Lives approach are similar to ‘traditional’ respite provision and provide an important option for commissioners. Appendices include details of calculations of the cost of providing Shared Lives respite care and day services; the results of a rapid evidence assessment on outcomes of ‘traditional’ respite care; and details of Healthcare service usage modelling.

Autism Spectrum Disorder in Adults: Diagnosis and Management [CG142]
The National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence, London. 2016

This guideline covers diagnosing and managing suspected or confirmed autism spectrum disorder (autism, Asperger’s syndrome and atypical autism) in people aged 18 and over. It aims to improve access and engagement with interventions and services, and the experience of care, for people with autism.

In August 2016, 2 research recommendations were removed from this guideline.

Recommendations
This guideline includes recommendations on:

identification and assessment
interventions for autism
interventions for challenging behaviour
interventions for coexisting mental disorders
assessment and interventions for families, partners and carers
organising and delivering care
Who is it for?
Health and social care professionals (including those in the independent sector)
Commissioners and providers
Adults with autism and their families, partners and carers

Related NICE guideline:
APPENDIX 18:HEALTH ECONOMIC EVIDENCE – EVIDENCE TABLES OF PUBLISHED STUDIES Authors not listed

Carers: Provision of Support for Adult Carers [GID-NG10046]
The National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence, London. Due to complete 2020

In development

Related NICE guideline:
In development In development

Carers' Health-Related Quality of Life in Global Health Technology Assessment: Guidance, Case Studies and Recommendations.
Pennington B, Eaton J, Hatswell AJ, Taylor H. Carers' Health-Related Quality of Life in Global Health Technology Assessment: Guidance, Case Studies and Recommendations. 2022

Challenging Behaviour and Learning Disabilities: Prevention and Interventions for People with Learning Disabilities Whose Behaviour Challenges [NG11]
The National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence, London. 2015

This guideline covers interventions and support for children, young people and adults with a learning disability and behaviour that challenges. It highlights the importance of understanding the cause of behaviour that challenges, and performing thorough assessments so that steps can be taken to help people change their behaviour and improve their quality of life. The guideline also covers support and intervention for family members or carers.

NICE has produced an easy read version for people with a learning disability.

Recommendations
This guideline includes recommendations on:

general principles of care
support and interventions for family members or carers
early identification of the emergence of behaviour that challenges
assessment
psychological and environmental interventions
medication
interventions for coexisting health problems and sleep problems
Who is it for?
Healthcare professionals, commissioners and providers in health and social care
Parents, family members or carers of children, young people and adults with a learning disability and behaviour that challenges

Related NICE guideline:
Appendix T: Health economic evidence – economic profiles Authors not listed

Cost effectiveness of a manual based coping strategy programme in promoting the mental health of family carers of people with dementia (the START (STrAtegies for RelaTives) study): a pragmatic randomised controlled trial.
Knapp M, King D, Romeo R, et al British Medical Journal, 347, f6342. 2013

Objective To assess whether the START (STrAtegies for RelatTives) intervention added to treatment as usual is cost effective compared with usual treatment alone.

Design Cost effectiveness analysis nested within a pragmatic randomised controlled trial.

Setting Three mental health and one neurological outpatient dementia service in London and Essex, UK.

Participants Family carers of people with dementia.

Intervention Eight session, manual based, coping intervention delivered by supervised psychology graduates to family carers of people with dementia added to usual treatment, compared with usual treatment alone.

Primary outcome measures Costs measured from a health and social care perspective were analysed alongside the Hospital Anxiety and Depression Scale total score (HADS-T) of affective symptoms and quality adjusted life years (QALYs) in cost effectiveness analyses over eight months from baseline.

Results Of the 260 participants recruited to the study, 173 were randomised to the START intervention, and 87 to usual treatment alone. Mean HADS-T scores were lower in the intervention group than the usual treatment group over the 8 month evaluation period (mean difference −1.79 (95% CI −3.32 to −0.33)), indicating better outcomes associated with the START intervention. There was a small improvement in health related quality of life as measured by QALYs (0.03 (−0.01 to 0.08)). Costs were no different between the intervention and usual treatment groups (£252 (−28 to 565) higher for START group). The cost effectiveness calculations suggested that START had a greater than 99% chance of being cost effective compared with usual treatment alone at a willingness to pay threshold of £30 000 per QALY gained, and a high probability of cost effectiveness on the HADS-T measure.

Conclusions The manual based coping intervention START, when added to treatment as usual, was cost effective compared with treatment as usual alone by reference to both outcome measures (affective symptoms for family carers, and carer based QALYs).

Cost-utility analyses of interventions for informal carers: A Systematic and Critical Review
Guets, Wilfried; Al-Janabi, Hareth; Perrier, Lionel Cost-utility analyses of interventions for informal carers: A Systematic and Critical Review 2019

Costs and cost-effectiveness of the meeting centres support programme for people living with dementia and carers in Italy, Poland and the UK: the MEETINGDEM study
Henderson, Catherine, Rehill, Amritpal, Brooker, Dawn, Evans, Simon, Evans, Shirley, Bray, Jennifer, Saibene, Francesca Lea, Scorolli, Claudia, Szcześniak, Dorota, D'Arma, Alessia, Lion, Katarzyna, Atkinson, Teresa, Farina, Elisabetta, Rymaszewska, Joanna, Chattat, Rabih, Meiland, Franka, Dröes, Rose-Marie and Knapp, Martin Costs and cost-effectiveness of the meeting centres support programme for people living with dementia and carers in Italy, Poland and the UK: the MEETINGDEM study 2021

Dementia care costs and outcomes: a systematic review
Knapp M, Iemmi V, Romeo R International Journal of Geriatric Psychiatry, 28:, 551-556. 2013

Abstract
OBJECTIVE:
We reviewed evidence on the cost-effectiveness of prevention, care and treatment strategies in relation to dementia.

METHODS:
We performed a systematic review of available literature on economic evaluations of dementia care, searching key databases and websites in medicine, social care and economics. Literature reviews were privileged, and other study designs were included only to fill gaps in the evidence base. Narrative analysis was used to synthesise the results.

RESULTS:
We identified 56 literature reviews and 29 single studies offering economic evidence on dementia care. There is more cost-effectiveness evidence on pharmacological therapies than other interventions. Acetylcholinesterase inhibitors for mild-to-moderate disease and memantine for moderate-to-severe disease were found to be cost-effective. Regarding non-pharmacological treatments, cognitive stimulation therapy, tailored activity programme and occupational therapy were found to be more cost-effective than usual care. There was some evidence to suggest that respite care in day settings and psychosocial interventions for carers could be cost-effective. Coordinated care management and personal budgets held by carers have also demonstrated cost-effectiveness in some studies.

CONCLUSION:
Five barriers to achieving better value for money in dementia care were identified: the scarcity and low methodological quality of available studies, the difficulty of generalising from available evidence, the narrowness of cost measures, a reluctance to implement evidence and the poor coordination of health and social care provision and financing.

Dementia: Assessment, Management and Support for People Living with Dementia and their Carers [NG97]
The National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence, London. 2018

This guideline covers diagnosing and managing dementia (including Alzheimer’s disease). It aims to improve care by making recommendations on training staff and helping carers to support people living with dementia.

Recommendations
This guideline includes recommendations on:
• involving people living with dementia in decisions about their care
• assessment and diagnosis
• interventions to promote cognition, independence and wellbeing
• pharmacological interventions
• managing non-cognitive symptoms
• supporting carers
• staff training and education

Who is it for?
• Healthcare and social care professionals caring for and supporting people living with dementia
• Commissioners and providers of dementia health and social care services
• Housing associations, private and voluntary organisations contracted by the NHS or social services to provide care for people living with dementia
• People living with dementia, their families and carers

Related NICE guideline:
Appendix J:Health Economics Authors not listed

Dying Well at Home: The Case for Integrated Working
Social Care Institute for Excellence Social Care Institute for Excellence, London. 2013

The NHS should have a better evidence-based understanding of the relative costs of specialist and generalist care at the end of life, analysed according to place of care delivery.
Time spent in hospital in the last year of life is the most expensive factor in end of life care. Policy makers and commissioners should concentrate on interventions to keep people out of hospital if they do not need to be there, and to discharge them as early as possible.
Economic analyses should reflect the ‘cost’ to family members of caring, and should consider how savings to the state can be harnessed to support carers to continue to care at home.

Economic case for local investment in carer support
Local Government Association Association of Directors of Adult Social Services, London. 2015

The Care Act creates increased responsibilities for councils to address carers’ needs both through preventive services and by meeting carers’ eligible needs. This short factsheet aims to help local authorities to consider whether to put in place a policy of charging carers for services. Based on sample data from case studies from the London Borough of Newham and Surrey County Council, it provides a practical case for investing in support for carers. It sets out the evidence that charging would be a false economy because it would lead to increased ‘carer breakdown’ and the costs of replacing the care provided by those carers would outweigh the income from charging. It aims to help authorities to quantify the financial impact of carers not taking up services if charged and the subsequent lack of support leading to carer breakdown. The evidence suggests that investment in carers’ services to support them in their caring role is financially beneficial for social care and sees a significant return on any investment made. It concludes that local authorities need to give careful consideration to the balance of investment and the potential impact of charging carers for these services

Home Care: Delivering Personal Care and Practical Support to Older People Living in their Own Homes [NG21]
The National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence, London. 2015

This guideline covers the planning and delivery of person-centred care for older people living in their own homes (known as home care or domiciliary care). It aims to promote older people’s independence and to ensure safe and consistently high quality home care services.

The Care Quality Commission uses NICE guidelines as evidence to inform the inspection process.

Recommendations
The guideline includes recommendations on:

ensuring care is person centred
providing information about care and support options
planning and reviewing home care and support
delivering home care, including recommendations on the length home care visits
joint working between health and social care
ensuring safety and safeguarding people using home care services
recruiting, training and supporting home care workers
Who is it for?
Health and social care practitioners
Home care provider organisations
Home care managers and workers
Older people using or planning to use home care services, and their carers
Commissioners of home care services should ensure any service specifications take into account the recommendations in this guideline.

Related NICE guideline:
APPENDIX C3 – Economics Report Bauer A, King D, Knapp M

Investigating the economic case of a service to support carers of people with dementia: A cross‐sectional survey‐based feasibility study in England
Longo F, Faria R, Parker G, Gridley K, Aspinal F, Van den Berg B, Weatherly H. Investigating the economic case of a service to support carers of people with dementia: A cross‐sectional survey‐based feasibility study in England 2018

Learning Disabilities and Behaviour That Challenges: Service Design and Delivery [NG93]
The National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence, London. 2018

This guideline covers services for children, young people and adults with a learning disability (or autism and a learning disability) and behaviour that challenges. It aims to promote a lifelong approach to supporting people and their families and carers, focusing on prevention and early intervention and minimising inpatient admissions.

This guideline should be read alongside the NICE guideline on challenging behaviour and learning disabilities: prevention and interventions.

We have produced an EasyRead version and video to explain this guidance, which are available from information for the public.

Recommendations
This guideline includes recommendations on:

strategic planning and infrastructure
enabling person-centred care and support
early intervention and support for families and carers
services in the community
housing and related support
services for children and young people
carers’ breaks services
making the right use of inpatient services
staff skills and values
Who is it for?
Commissioners and providers of health and social care services for children, young people and adults with a learning disability and behaviour that challenges
Health and social care practitioners working with children, young people and adults with a learning disability and behaviour that challenges
Providers of related services, including housing, education, employment and criminal justice services
Practitioners working with children, young people and adults with a learning disability and behaviour that challenges in other services or settings, including education, housing, voluntary and community services, employment and criminal justice services
Children, young people and adults with a learning disability and behaviour that challenges and their families and carers, including people who pay for their own care

Related NICE guideline:
Service models guidance: individuals with intellectual disabilities and behaviour that challenges Trachtenberg M and Knapp M

Living Well for Longer: The Economic Argument for Investing in the Health and Wellbeing of Older People in Wales
Edwards RT, Spencer LH, Bryning L, et al Centre for Health Economics and Medicines Evaluation, Bangor. 2018

This report by the University of Bangor makes the economic argument for investing in prevention at different stages of the life course, in particular, older people.

Commissioned by Public Health Wales, it brings together robust international and UK evidence on the relative cost-effectiveness and return on investment of devoting public sector resources to programmes and practices supporting older people.

In relation to housing, it notes that the Welsh Government spends around £50 million per year on adapting the homes of older and disabled people, helping them to live safely and independently.

For every £1 invested in Care & Repair there is £7.50 savings to the taxpayer. It comes to the conclusion that it is cost-effective to improve housing by providing heating and insulation for high risk groups of over 65s.

Long-term clinical and cost-effectiveness of psychological intervention for family carers of people with dementia: a single-blind, randomized, controlled trial
Livingston G, Barber J, Rapaport P Lancet Psychiatry, 1, 539-548. 2014

Background Two-thirds of people with dementia live at home supported mainly by family carers. These carers
frequently develop clinical depression or anxiety, which predicts care breakdown. We aimed to assess the clinical
eff ectiveness (long-term reduction of depression and anxiety symptoms in family carers) and cost-eff ectiveness of a
psychological intervention called START (STrAtegies for RelaTives).
Methods We did a randomised, parallel-group trial with masked outcome assessments in three UK mental-health
services and one neurological-outpatient dementia service. We included self-identifi ed family carers of people with
dementia who had been referred in the previous year and gave support at least once per week to the person with
dementia. We randomly assigned these carers, via an online computer-generated randomisation system from an
independent clinical trials unit, to either START, an 8-session, manual-based coping intervention delivered by
supervised psychology graduates, or treatment as usual (TAU). The primary long-term outcomes were aff ective
symptoms (Hospital Anxiety and Depression Scale total score [HADS-T]) 2 years after randomisation and costeff ectiveness (health and social care perspectives) over 24 months. Analysis was by intention to treat, excluding
carers with data missing at both 12 and 24 months. This trial is registered ISCTRN70017938.
Findings From November 4, 2009, to June 8, 2011, we recruited 260 carers. 173 carers were randomly assigned to
START and 87 to TAU. Of these 260 participants, 209 (80%) were included in the clinical effi cacy analysis
(140 START, 69 TAU). At 24 months, compared with TAU the START group was signifi cantly better for HADS-T
(mean diff erence –2·58 points, 95% CI –4·26 to –0·90; p=0·003). The intervention is cost eff ective for both carers
and patients (67% probability of cost-eff ectiveness at the £20 000 per QALY willingness-to-pay threshold, and 70%
at the £30 000 threshold).
Interpretation START is clinically eff ective, improving carer mood and anxiety levels for 2 years. Carers in the
control TAU group were seven times more likely to have clinically signifi cant depression than those receiving
START. START is cost eff ective with respect to carer and patient outcomes, and National Institute for Health and
Care Excellence (NICE) thresholds. The number of people with dementia is rapidly growing, and policy
frameworks assume that their families will remain the frontline providers of (unpaid) support. This cost-neutral
intervention, which substantially improves family-carers’ mental health and quality of life, should therefore be
widely available.

Mental Health of Adults in Contact with the Criminal Justice System [NG66]
The National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence, London. 2017

This guideline covers assessing, diagnosing and managing mental health problems in adults (aged 18 and over) who are in contact with the criminal justice system. It aims to improve mental health and wellbeing in this population by establishing principles for assessment and management, and promoting more coordinated care planning and service organisation across the criminal justice system.

Also see NICE’s guideline on physical health of people in prison, which covers mental health assessment for the prison population as part of the first-stage health assessment for people going into prison, and continuity of mental health care for people leaving prison.

Recommendations
This guideline includes recommendations on:

assessing and managing a person’s mental health problems, including assessing risk to themselves and others
planning their care
psychological and pharmacological interventions
how services should be organised
staff training
Who is it for?
Commissioners and providers of health and justice services
All health and social care professionals working with adults in contact with the criminal justice system in community, primary care, secondary care and secure settings
Adults in contact with the criminal justice system who have or may have mental health problems

Related NICE guideline:
Appendix T: Health economic evidence – economic profiles Authors not listed

Meta-review of International Evidence on Interventions to Support Carers
Parker G, Arksey H, Harden M Social Policy Research Unit, York. 2010

Given the increasingly valuable and essential role that carers play in society, it is timely to undertake a comprehensive review of the research literature on interventions for carers. The present overview of the evidence base relating to the outcomes and cost-effectiveness of support was intended to inform thinking by the Department of Health and the Standing Commission on Carers about how best to improve outcomes for carers, as well as identifying future research areas.

Money Matters: Reviews of Cost-effective Initiatives
Institute of Public Care The Institute for Research and Innovation in Social Services, Glasgow. 2011

This set of eight case studies, produced by the Institute of Public Care on behalf of IRISS (the Institute for Research and Innovation in Social Services), provides detailed analysis of the cost-effectiveness of a series of recent social care initiatives, ranging from nationwide and relatively high-profile schemes such as individual budgets to those thus far unique to one country, city or local authority area in the UK.

In each case, the report provides an overview of the initiative – its origins, including previous variants of the scheme, who it is intended to help, and how it works in practice – before justifying claims of cost-effectiveness by reference to detailed comparative costings, using one illustrative implementation of the scheme where the initiative is nationwide. Based on the analysis, the report sets out the initiative’s applicability to other settings as well as potential impediments to broader implementation.

The eight initiatives scrutinised are:

A study of Shared Lives schemes in south east England for providing care in the carer’s own home for individuals placed there by the local authority.
An extra-care housing scheme completed in Bradford.
Health in mind – social inclusion support for people with mental health needs in Bradford based round a series of mental health “well-being cafes”.
LinkAge Plus – analysis of nationwide DWP-funded pilot schemes for an holistic approach to provision of services for older people.
The Rapid Response Adaptations Programme – a Welsh initiative for providing adaptations such as ramps to let people return to their own homes.
A project in north west England to guide older people with low-level needs through a self-assessment process.
Analysis of various pilot sites taking different approaches to individual budgets, based on a broader evaluation conducted in 2008.
A project in two acute trusts in London to reconfigure hospital discharge procedures to emphasise rehabilitation.

National Evaluation of Partnerships for Older People Projects: Final Report
Windle K, Wagland R, Forder J, et al Personal Social Services Research Unit, Kent. 2009

The Partnership for Older People Projects (POPP) were funded by the Department of Health to
develop services for older people, aimed at promoting their health, well‐being and independence
and preventing or delaying their need for higher intensity or institutional care. The evaluation found
that a wide range of projects resulted in improved quality of life for participants and considerable
savings, as well as better local working relationships.
 Twenty‐nine local authorities were involved as pilot sites, working with health and voluntary
sector partners to develop services, with funding of £60m
 Those projects developed ranged from low level services, such as lunch‐clubs, to more formal
preventive initiatives, such as hospital discharge and rapid response services
 Over a quarter of a million people (264,637) used one or more of these services
 The reduction in hospital emergency bed days resulted in considerable savings, to the extent
that for every extra £1 spent on the POPP services, there has been approximately a £1.20
additional benefit in savings on emergency bed days. This is the headline estimate drawn from a
statistically valid range of £0.80 to £1.60 saving on emergency bed days for every extra £1 spent
on the projects.
 Overnight hospital stays were seemingly reduced by 47% and use of Accident & Emergency
departments by 29%. Reductions were also seen in physiotherapy/occupational therapy and
clinic or outpatient appointments with a total cost reduction of £2,166 per person
 A practical example of what works is pro‐active case coordination services, where visits to A&E
departments fell by 60%, hospital overnight stays were reduced by 48%, phone calls to GPs fell
by 28%, visits to practice nurses reduced by 25% and GP appointments reduced by 10%
 Efficiency gains in health service use appear to have been achieved without any adverse impact
on the use of social care resources
 The overwhelming majority of the POPP projects have been sustained, with only 3% being closed
– either because they did not deliver the intended outcomes or because local strategic priorities
had changed
 PCTs have contributed to the sustainability of the POPP projects within all 29 pilot sites.
Moreover, within almost half of the sites, one or more of the projects are being entirely
sustained through PCT funding – a total of 20% of POPP projects. There are a further 14% of
projects for which PCTs are providing at least half of the necessary ongoing funding
 POPP services appear to have improved users’ quality of life, varying with the nature of
individual projects; those providing services to individuals with complex needs were particularly
successful, but low‐level preventive projects also had an impact
 All local projects involved older people in their design and management, although to varying
degrees, including as members of steering or programme boards, in staff recruitment panels, as
volunteers or in the evaluation
 Improved relationships with health agencies and the voluntary sector in the locality were
generally reported as a result of partnership working, although there were some difficulties
securing the involvement of GPs

NHS ENGLAND: THE SOCIOECONOMICS OF UNPAID CARE
Dr Alex Chapman & Brell Wilson-Morris NHS ENGLAND: THE SOCIOECONOMICS OF UNPAID CARE 2019

Older People with Social Care Needs and Multiple Long-term Conditions [NG22]
The National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence, London. 2015

This guideline covers planning and delivering social care and support for older people who have multiple long-term conditions. It promotes an integrated and person-centred approach to delivering effective health and social care services.

Recommendations
The guideline includes recommendations on:

identifying and assessing social care needs
care planning, including the role of the named care coordinator
supporting carers
integrating health and social care planning
delivering care
preventing social isolation
training health and social care practitioners

Who is it for?
Health and social care practitioners
Providers of care and support in health and social care services
Older people with social care needs and multiple long-term conditions (including both physical and mental health conditions), and their carers.
Commissioners should ensure any service specifications take into account the recommendations in this guideline.

Related NICE guideline:
Appendix C3: Cost-consequence and cost-utility analysis of an outpatient geriatric multidisciplinary assessment and case management intervention: the ‘GRACE’ model of care Trachtenberg M and Fernandez JL

Peer Support for People with Dementia: A Social Return on Investment (SROI) Study
Semple A, Willis E, de Waal H Health Innovation Network, London. 2015

Reports on a study using Social Return on Investment (SROI) analysis to examine the impact and social value of peer support groups as an intervention for people with dementia. Three peer support groups in South London participated in the study. A separate SROI analysis was carried out for each individual group to find out what people valued about the groups and how they helped them. The report presents the outcomes for each group, the indicators for evidencing these outcomes and the quality and duration of outcomes experienced. It then provides detail on the methodology used to calculate the impact and the social return on investment. Overall, the study found that peer support groups provide positive outcomes for people with dementia, their carers and the volunteers who support the groups. The benefits of participating in peer support groups included: reduced isolation and loneliness; increased stimulation, including mental stimulation; and increased wellbeing. Carers experienced a reduction in carer stress, carer burden and reduction in the feeling of loneliness. Volunteers had an increased sense of wellbeing through their engagement with the group, improved knowledge of dementia and gained transferrable skills. Overall the study found that for every pound (£) of investment the social value created by the three groups evaluated ranged from £1.17 to £5.18.

Quantifying the benefits of peer support for people with dementia: a social return on investment (SROI) study
Willis E, Semple A, de Waal H International Journal of Social Research and Practice, 17, 266–278. 2018

Objective: Peer support for people with dementia and carers is routinely advocated in national strategies and policy as a post-diagnostic intervention. However there is limited evidence to demonstrate the value these groups offer. This study looked at three dementia peer support groups in South London to evaluate what outcomes they produce and how much social value they create in relation to the cost of investment. Methods: A Social Return on Investment (SROI) analysis was undertaken, which involves collecting data on the inputs, outputs and outcomes of an intervention, which are put into a formula, the end result being a SROI ratio showing how much social value is created per £1 of investment. Results: Findings showed the three groups created social value ranging from £1.17 to £5.18 for every pound (£) of investment, dependent on the design and structure of the group. Key outcomes for people with dementia were mental stimulation and a reduction in loneliness and isolation. Carers reported a reduction in stress and burden of care. Volunteers cited an increased knowledge of dementia. Conclusions: This study has shown that peer groups for people with dementia produce a social value greater than the cost of investment which provides encouraging evidence for those looking to commission, invest, set up or evaluate peer support groups for people with dementia and carers. Beyond the SROI ratio, this study has shown these groups create beneficial outcomes not only for the group members but also more widely for their carers and the group volunteers.

REMCARE: reminiscence groups for people with dementia and their family caregivers? Effectiveness and cost-effectiveness pragmatic multicentre randomised trial
Woods R et al Health Technology Assessment, 16, 1-121. 2012

Abstract
OBJECTIVES:
The aim of the REMiniscence groups for people with dementia and their family CAREgivers (REMCARE) study was to assess the effectiveness and cost-effectiveness of joint reminiscence groups for people with dementia and their family caregivers as compared with usual care.

DESIGN:
A multicentre, pragmatic randomised controlled trial with two parallel arms – an intervention group and a usual-care control group – was carried out. A restricted dynamic method of randomisation was used with an overall allocation ratio of 1 : 1, restricted to ensure intervention groups of a viable size. Assessments, blind to treatment allocation, were carried out at baseline, 3 months and 10 months (primary end point).

SETTING:
Most participants were recruited through NHS Memory Clinics and Community Mental Health Teams for older people. Assessments were usually carried out in the person’s home, and treatment groups were held in a variety of community settings.

PARTICIPANTS:
A total of 488 individuals (mean age 77.5 years) with mild to moderate dementia (meeting Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition criteria), who were initially living in the community, and who had a relative or other caregiver maintaining regular contact, who could act as an informant and was willing and able to participate in the intervention, were recruited to the study. Most carers were spouses (71%). A total of 350 dyads completed the study.

INTERVENTIONS:
The intervention consisted of joint reminiscence groups held weekly for 12 consecutive weeks, followed by monthly maintenance sessions for a further 7 months. The sessions followed a treatment manual, and were led by two trained facilitators in each centre, supported by a number of volunteers. Up to 12 dyads were invited to attend each group.

MAIN OUTCOME MEASURES:
The primary outcome measures were self-reported quality of life for the person with dementia and psychological distress for the carer [General Health Questionnaire-28 item version (GHQ-28)]. Secondary outcome measures included autobiographical memory and activities of daily living for the person with dementia, carer stress for the carer and mood, relationship quality and service use and costs for both parties.

RESULTS:
The intention-to-treat analysis identified no differences in outcome between the intervention and control conditions on primary or secondary outcomes [self-reported quality of life in Alzheimer’s disease: mean difference 0.07, standard error (SE) 0.65; F = 0.48; p = 0.53]. Carers of people with dementia allocated to the reminiscence intervention reported a significant increase in anxiety on a subscale of the GHQ-28 at the 10-month end point (mean difference 1.25, SE 0.5; F = 8.28; p = 0.04). Compliance analyses suggested some benefits for people with dementia who attended more reminiscence sessions; however, carers attending more groups showed increased caregiving stress. Use of health- and social-care services was modest, with no significant difference in service use between conditions. Owing to negligible difference in quality-adjusted life-year gains (derived from European Quality of Life-5 Dimensions) between the conditions the planned full economic analysis was curtailed.

CONCLUSIONS:
This trial does not provide support for the effectiveness or cost-effectiveness of joint reminiscence groups for people with dementia and their carers. Although there may be some beneficial effects for people with dementia who attend sessions as planned, this must be viewed in the context of raised anxiety and stress in their carers. The reasons for these discrepant outcomes need to be explored further, and may necessitate reappraisal of the movement towards joint interventions.

TRIAL REGISTRATION:
Current Controlled Trials ISRCTN42430123.

FUNDING:
This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 16, No. 48. See the HTA programme website for further project information.

Review of the international evidence on support for unpaid carers
Brimblecombe N, Fernandez JL, Knapp M, et al Journal of Long-Term Care, September, 25-40. 2018

Abstract Globally and locally, ongoing demographic, socio-cultural and economic changes have implications for unpaid carers. For those who provide unpaid care, particularly at higher intensities, there is substantial evidence of negative effects on employment, health and wellbeing, with associated individual and soci-etal costs. For these reasons, there is increasing policy emphasis on supporting unpaid care in the UK, mirrored, and in some cases exceeded, internationally. This paper aims to provide an overview of the interna-tional evidence on effective support for unpaid carers. This evidence synthesis finds an extensive literature on a wide range of potentially effective interventions to support unpaid carers under the broad categories of indirect support (services for the care-recipient), direct support (such as psychological therapies), work condi-tions, and combinations of these. However, there are significant gaps in the evidence base with regards to interventions, outcomes and types of caring situation studied, with a dearth of evidence on cost-effectiveness and few evaluations of key recent policy initiatives. Evidence is strongest and most consistent for formal care services for people with care needs (so-called ‘replacement’ or ‘substitution’ care); flexible working conditions; psychological therapy, training and educa-tion interventions; and support groups. In many cases it may be that a combination of interventions is most effective. These findings have implications for social care policy and practice which aims to support carers, particularly in the context of the changing landscape of global macro-level processes and recent policy, legislative and funding changes for local authority and voluntary sector providers of support and services for carers in the UK.Keywords: unpaid care, support for unpaid carers, social care services, work conditions, cash benefits, review.

Rotherham Social Prescribing Scheme
Social Care Institute for Excellence Social Care Institute for Excellence, London. 2017

An evaluation conducted by the Centre for Regional Economic and Social Research (CRESR) at Sheffield Hallam University of the pilot phase of the service found that the service had positive social and economic impacts. The service uses a specially developed health and wellbeing tool to measure social outcomes for people referred to the service. Its 8 measures cover different aspects of self-management and wellbeing, such as lifestyle and managing symptoms, to work and volunteering, to friends and family, and people are asked to use a 5 point scale to rate their progress. 17 qualitative interviews were also held with participants and their carers, who were referred to 5 of the 31 service providers.

During the pilot phase of the project, of the 280 participants who had their wellbeing measures followed up after 3-4 months, 83 per cent of people experienced positive change in at least one social outcome area. The biggest changes were seen for patients who scored the least at baseline (work, volunteering etc., and feeling positive); and a majority of low scoring participants (two points or less at baseline) made progress- among them 54% improved their score in work & volunteering area, while 61% improved their score in the feeling positive area. Among the case studies (those interviewed), the positive outcomes described using four broad themes of increased well-being, reduced social isolation and loneliness, increased independence, and access to wider welfare benefits.

There were also significant benefits to the NHS, with inpatient admissions reduced by 21 per cent; Accident and Emergency attendances reduced by as much as 20 per cent; and outpatient appointments reduced by as much as 21 per cent, These increases were calculated looking at patient-level Hospital Episode Statistics provided by the Commissioning Support Unit (CSU), of a cohort of 108 participants who had 12-months of post-referral data available, after being referred between September and December 2012.

Shared Lives Costs and Effectiveness (SLiCE)
Brookes N Personal Social Services Research Unit, Kent. 2018

In the Shared Lives model, an adult who needs support and/or accommodation moves in with or regularly visits an approved Shared Lives carer after they have been matched for compatibility. At present there is a limited evidence base for Shared Lives. The proposed research will mean that a thorough exploration of how successful the model is and whether it represents a good investment can be explored. An outcome evaluation will include: collection of data including service user characteristics, risks and needs, case management information, service use, quality of life and well-being measures; data collection from a comparison group of Shared Lives-suitable, non-participating service users; interviews with service users and Shared Lives carers focusing on outcomes; and use of other administrative and survey data.

Specialist nursing support for unpaid carers of people with dementia: a mixed-methods feasibility study.
Gridley K, Aspinal F, Parker G, Weatherly H, Faria R, Longo F, van den Berg B. Specialist nursing support for unpaid carers of people with dementia: a mixed-methods feasibility study. 2019

Supporting adult carers
NICE guideline NG150 Supporting adult carers 2020

Supporting Carers of People with Dementia
Parker G, Gridley K, Aspinal F Socia Policy Research Unit, York. 2018

Unpaid carers are the mainstay of the UK care system for people with dementia. Yet caring
can have an impact on the well-being and health of the carer.
Admiral Nursing is the only specialist nursing service in the UK
that specifically focuses on supporting carers of people with
dementia, but evidence of its effectiveness, costs, and
relationships to other services is limited. This project aimed to
address this gap and explore the feasibility of full-scale formal
evaluation.

Systematic Review of Cost-Utility Analyses That Have Included Carer and Family Member Health-Related Quality of Life
Scope A, Bhadhuri A, Pennington B. Systematic Review of Cost-Utility Analyses That Have Included Carer and Family Member Health-Related Quality of Life 2022

The cost-effectiveness of a telephone-based intervention to support caregivers of older people discharged from hospital
Youens, D., Parsons, R., Toye, C. et al. The cost-effectiveness of a telephone-based intervention to support caregivers of older people discharged from hospital 2019

The Economic Value of the Adult Social Care Sector in England
ICF GHK Skills for Care, Leeds. 2013

Skills for Care is part of the Sector SkillsCouncil, Skills for Care and Development. It is responsible for improving qualifications, training and development for alladult social care workers in England. Skills for Care had identified a need to establish the economic contribution of the activitiesprovided by the sector, measured as the economic value of the sector. However, the adult social care sector in England has historically been difficult to assess in terms of its economic value, as distinct from the children’s workforce and the wider UK workforce.Skills for Care has recently generated estimates of the number of employers, enterprises and employees in the sector, through its work on the National Minimum Dataset for Adult Social Care (NMDS-SC). ICF GHK was commissioned by Skills for Care to build on this work and to assess the economic significance of the adult social care sector in England to the wider economy.This study was commissioned in support of further policy development towards the sector including consideration of a broader case for investment in skills in the sector. The purpose of the study was to establish the economic contribution of adult social care servicesin England(defined in terms consistentwith the UK national accounts)and provide estimates of:■the annual GDP andGVAgenerated directly by the adult social care sector in England (including the public sector activities within the sector as well as the independent sector) (direct impact);■productivity -GVA per worker for the adult social care sector in England;■the supply chain multiplier for the adult social care sector in England (indirect impact);■the wage multiplier for the adult social care sector in England (induced impact)

The Long Term Care Revolution
Housing Learning and Improvement Network Housing Learning and Improvement Network, London. 2013

This Housing LIN Report comprehensively outlines the case for a revolution in long term care and captures some of the supporting material that has aided the development of the TSB’s Assisted Living Innovation Platform’s, ‘Long Term Care Revolution’ programme.

It sets out a vision for an alternative to institutional care, drawing on substantial evidence about the views of older people and their carers in the UK, lessons from abroad, the implications for industry/providers and makes recommendations to government and industry leaders on key factors for revolutionizing long term care for older people, including mainstream and specialist living environments.

The Role of Adult Social Care in Improving Outcomes for Young People Who Provide Unpaid Care
Brimblecombe N Personal Social Services Research Unit, London. Due to complete 2019

There is increasing emphasis in social care policy and practice in England on the provision of formal support and services for the care-recipient to meet needs and improve outcomes for unpaid carers. This includes young adult carers for whom there are negative short and long-term outcomes in education, employment, mental and physical health, with associated individual and societal costs. Despite this, little is known about the role of social care services in alleviating young people’s need to provide unpaid care and improving outcomes, nor about the extent of services needed and the cost of providing them. This study aims to fill these gaps through analysis of large, nationally representative datasets and collection of primary questionnaire data from young carers and the adult they support. The study aims to investigate associations between outcomes for young adult carers aged 16 to 25 in England and provision of social care services for the adult they care for, needs for such services and costs of providing them. Young carers and adult social care users, practitioners and policy makers will be involved in the study design, implementation and knowledge exchange activities to keep the project policy and practice relevant and facilitate impact.

The UTOPIA Project: Using Telecare for Older People in Adult Social Care. The Findings of a 2016-17 National Survey of Local Authority Telecare Provision for Older People in England
Woolham J, Steils N, Fisk M, et al Social Care Workforce Research Unit, King's College London, London. 2018

This report describes how electronic assistive technology and telecare are used by local authorities in England to support older people. It is based on an online survey of local authority telecare managers to identify local authority’s aims when offering telecare to older people, the methods they use to assess whether their objectives are achieved, and how telecare is operationalised and delivered. It also aimed to explore why the findings of the earlier the Whole System Demonstrator project – which found no evidence that telecare improved outcomes – have been overlooked by local authorities and policy makers, and whether there is other evidence that could account for WSD findings. The survey results found a third of local authorities used research evidence to inform telecare services and half were also aware of the Whole System Demonstrator. It also found that telecare is used in most local authorities to save money. Although there was some evidence of monitoring, there was no evidence of local authorities adopting agreed standards. The final section of the report provides suggestions for improving telecare service practice. They include the areas of using telecare as a substitute for social care; expanding the focus on telecare beyond risk management, safety and cost reduction; the impact of telecare on family members, carrying out effective assessments, and training

Transition Between Inpatient Hospital Settings and Community or Care Home Settings for Adults with Social Care Needs [NG27]
The National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence, London. 2015

This guideline covers the transition between inpatient hospital settings and community or care homes for adults with social care needs. It aims to improve people’s experience of admission to, and discharge from, hospital by better coordination of health and social care services.

The Care Quality Commission uses NICE guidelines as evidence to inform the inspection process.

Recommendations
The guideline includes recommendations on:

person-centred care and communication and information sharing
before admission to hospital including developing a care plan and explaining what type of care the person might receive
admission to hospital including the establishment of a hospital-based multi-disciplinary team
during hospital stay including recording medicines and assessments and regularly reviewing and updating the person’s progress towards discharge
discharge from hospital including the role of the discharge coordinator
supporting infrastructure
training and development for people involved in the hospital discharge process.
Who is it for?
The guideline is for health and social care practitioners; health and social care providers; commissioners; service users and their carers (including people who purchase their own care).

Related NICE guideline:
Appendix C3 Bauer A and Fernandez JL

Transition Between Inpatient Mental Health Settings and Community or Care Home Settings [NG53]
The National Institute for Health and Care Excellence (NICE) National Institute for Health and Care Excellence, London. 2016

This guideline covers the period before, during and after a person is admitted to, and discharged from, a mental health hospital. It aims to help people who use mental health services, and their families and carers, to have a better experience of transition by improving the way it’s planned and carried out.

The Care Quality Commission uses NICE guidelines as evidence to inform the inspection process.

Recommendations
This guideline includes recommendations on:

overarching principles for good transition
planning for admission and discharge
out-of-area admissions
support for families and carers
Who is it for?
Providers of care and support in inpatient and community mental health and social care services
Front-line practitioners and managers in inpatient and community mental health and social care services
Commissioners of mental health services
People who use inpatient and community mental health services, their families and carers

Related NICE guideline:
Economics, economic modelling, appendix C3.2 Cost–utility analysis of a 2-year multi-staged psychological intervention for bipolar I patients with their first, second or third hospitalisation vs Generic outpatient treatment of bipolar affective disorders (active treatment as usual) Trachtenberg M and Knapp M

Translating evidence of costs and benefits of support at home in later stage dementia: to the NHS, social care and family carers
Clarkson, Paul (PI), Shields, Gemma (CoI), Davies, Susan (CoI), Toole, Celia (Sight & Mind) (CoI) Translating evidence of costs and benefits of support at home in later stage dementia: to the NHS, social care and family carers 2023

Updated meta-review of evidence on support for carers
Thomas S, Dalton J, Harden M, et al Health Services and Delivery Research, 5, 12. 2016

BACKGROUND:
Policy and research interest in carers continues to grow. A previous meta-review, published in 2010, by Parker et al. (Parker G, Arksey H, Harden M. Meta-review of International Evidence on Interventions to Support Carers. York: Social Policy Research Unit, University of York; 2010) found little compelling evidence of effectiveness about specific interventions and costs.

OBJECTIVE:
To update what is known about effective interventions to support carers of ill, disabled or older adults.

DESIGN:
Rapid meta-review.

SETTING:
Any relevant to the UK health and social care system.

PARTICIPANTS:
Carers (who provide support on an unpaid basis) of adults who are ill, disabled or older.

INTERVENTIONS:
Any intervention primarily aimed at carers.

MAIN OUTCOME MEASURES:
Any direct outcome for carers.

DATA SOURCES:
Database searches (including Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, MEDLINE, Applied Social Sciences Index and Abstracts and Social Care Online) for systematic reviews published from January 2009 to 2016.

REVIEW METHODS:
We used EndNote X7.4 (Thomson Reuters, CA, USA) to screen titles and abstracts. Final decisions on the inclusion of papers were made by two reviewers independently, using a Microsoft Excel® 2013 spreadsheet (Microsoft Corporation, Redmond, WA, USA). We carried out a narrative synthesis structured by patient condition and by seven outcomes of interest. We assessed the quality of the included systematic reviews using established criteria. We invited a user group of carers to give their views on the overall findings of our review.

RESULTS:
Sixty-one systematic reviews were included (27 of high quality, 25 of medium quality and nine of low quality). Patterns in the literature were similar to those in earlier work. The quality of reviews had improved, but primary studies remained limited in quality and quantity. Of the high-quality reviews, 14 focused on carers of people with dementia, four focused on carers of those with cancer, four focused on carers of people with stroke, three focused on carers of those at the end of life with various conditions and two focused on carers of people with mental health problems. Multicomponent interventions featured prominently, emphasising psychosocial or psychoeducational content, education and training. Multiple outcomes were explored, primarily in mental health, burden and stress, and well-being or quality of life. Negative effects following respite care were unsupported by our user group. As with earlier work, we found little evidence on intervention cost-effectiveness. No differences in review topics were found across high-, medium- and low-quality reviews.

LIMITATIONS:
The nature of meta-reviews precludes definitive conclusions about intervention effectiveness, for whom and why. Many of the included reviews were small in size and authors generally relied on small numbers of studies to underpin their conclusions. The meta-review was restricted to English-language publications. Short timescales prevented any investigation of the overlap of primary studies, and growth in the evidence base since the original meta-review meant that post-protocol decisions were necessary.

CONCLUSIONS:
There is no ‘one size fits all’ intervention to support carers. Potential exists for effective support in specific groups of carers. This includes shared learning, cognitive reframing, meditation and computer-delivered psychosocial support for carers of people with dementia, and psychosocial interventions, art therapy and counselling for carers of people with cancer. Counselling may also help carers of people with stroke. The effectiveness of respite care remains a paradox, given the apparent conflict between the empirical evidence and the views of carers.

FUTURE WORK:
More good-quality, theory-based, primary research is warranted. Evidence is needed on the differential impact of interventions for various types of carers (including young carers and carers from minority groups), and on the effectiveness of constituent parts in multicomponent programmes. Further research triangulating qualitative and quantitative evidence on respite care is urgently required. The overlap of primary studies was not formally investigated in our review, and this warrants future evaluation.

STUDY REGISTRATION:
This study is registered as PROSPERO CRD42016033367.

Use and costs of services and unpaid care for people with mild-to-moderate dementia: Baseline results from the IDEAL cohort study
Henderson C, Knapp M, Nelis SM, Quinn C, Martyr A, Wu YT, Jones IR, Victor CR, Pickett JA, Hindle JV, Jones RW, Kopelman MD, Matthews FE, Morris RG, Rusted JM, Thom JM, Clare L; IDEAL Programme Team. Use and costs of services and unpaid care for people with mild-to-moderate dementia: Baseline results from the IDEAL cohort study 2019

What Works in Community Led Support?
Bown H, Carrier J, Hayden C National Development Team for Inclusion, Bath. 2017

This report has been written to share the findings, learning and examples of impact identified from working with 9 authorities across England, Wales and Scotland who are working differently to improve the lives and support of local people.

It is essentially an evaluation report on the authorities’ progress towards the outcomes and longer-term aims of community led support over the last 18 months, but we believe it is more than that.

We hope the learning shared here will help demonstrate what’s possible when applying core principles associated with asset based approaches at the same time as tackling hard systemic and cultural issues around speed of response, ease of access, changing the nature of ‘assessment’, reducing waiting times and lists, turning eligibility criteria on their heads and making the best use of local resources for people with a wide range of support needs.