The costs of dementia in England Wittenberg, Raphael; Knapp, Martin; Hu, Bo ...
International journal of geriatric psychiatry,
July 2019, Letnik:
34, Številka:
7
Journal Article
Recenzirano
Odprti dostop
Objectives
This study measures the average per person and annual total costs of dementia in England in 2015.
Methods/Design
Up‐to‐date data for England were drawn from multiple sources to identify ...prevalence of dementia by severity, patterns of health and social care service utilisation and their unit costs, levels of unpaid care and its economic impacts, and other costs of dementia. These data were used in a refined macrosimulation model to estimate annual per‐person and aggregate costs of dementia.
Results
There are around 690 000 people with dementia in England, of whom 565 000 receive unpaid care or community care or live in a care home. Total annual cost of dementia in England is estimated to be £24.2 billion in 2015, of which 42% (£10.1 billion) is attributable to unpaid care. Social care costs (£10.2 billion) are three times larger than health care costs (£3.8 billion). £6.2 billion of the total social care costs are met by users themselves and their families, with £4.0 billion (39.4%) funded by government. Total annual costs of mild, moderate, and severe dementia are £3.2 billion, £6.9 billion, and £14.1 billion, respectively. Average costs of mild, moderate, and severe dementia are £24 400, £27 450, and £46 050, respectively, per person per year.
Conclusions
Dementia has huge economic impacts on people living with the illness, their carers, and society as a whole. Better support for people with dementia and their carers, as well as fair and efficient financing of social care services, are essential to address the current and future challenges of dementia.
Objectives
The STrAtegies for RelaTives (START) intervention is effective and cost‐effective in supporting family carers of people with dementia. It is currently not available to all eligible carers ...in England. What would be the impacts on service costs and carer health‐related quality of life if START was provided to all eligible carers in England, currently and in future?
Methods
Effectiveness and cost‐effectiveness data from a previously conducted randomised controlled trial were combined with current and future projections of numbers of people with newly diagnosed dementia to estimate overall and component costs and health‐related quality of life outcomes between 2015 (base year for projections) and 2040.
Results
Scaling‐up START requires investments increasing annually but would lead to significant savings in health and social care costs. Family carers of people with dementia would experience improvements in mental health and quality of life, with clinical effects lasting at least 6 years. Scaling up the START intervention to eligible carers was estimated to cost £9.4 million in 2020, but these costs would lead to annual savings of £68 million, and total annual quality‐adjusted life year (QALY) gains of 1247. Although the costs of START would increase to £19.8 million in 2040, savings would rise to £142.7 million and Quality adjusted life years gained to 1883.
Conclusions
Scaling‐up START for family carers of people with dementia in England would improve the lives of family carers and reduce public sector costs. Family carers play a vital part in dementia care; evidence‐based interventions that help them to maintain this role, such as START, should be available across the country.
Key points
Family carers are the mainstay of dementia support across the world.
The STrAtegies for RelaTives (START) intervention has previously been shown to be clinically and cost‐effective.
Making START available to all eligible family carers in England, both currently and projected to 2040, would lead to significant savings in health and social care service costs, amounting to £143 million in 2040.
Improvements in the mental health and quality of life of carers would also be substantial.
Objectives
In response to a commissioned research update on dementia during the COVID‐19 pandemic, a UK‐based working group, comprising dementia researchers from a range of fields and disciplines, ...aimed to describe the impact of the pandemic on dementia wellbeing and identify priorities for future research.
Methods
We supplemented a rapid literature search (including unpublished, non‐peer reviewed and ongoing studies/reports) on dementia wellbeing in the context of COVID‐19 with expert group members' consensus about future research needs. From this we generated potential research questions the group judged to be relevant that were not covered by the existing literature.
Results
Themes emerged from 141 studies within the six domains of the NHS England COVID‐19 Dementia Wellbeing Pathway: Preventing Well, Diagnosing Well, Treating Well, Supporting Well, Living Well and Dying Well. We describe current research findings and knowledge gaps relating to the impact on people affected by dementia (individuals with a diagnosis, their carers and social contacts, health and social care practitioners and volunteers), services, research activities and organisations. Broad themes included the potential benefits and risks of new models of working including remote healthcare, the need for population‐representative longitudinal studies to monitor longer‐term impacts, and the importance of reporting dementia‐related findings within broader health and care studies.
Conclusions
The COVID‐19 pandemic has had a disproportionately negative impact on people affected by dementia. Researchers and funding organisations have responded rapidly to try to understand the impacts. Future research should highlight and resolve outstanding questions to develop evidence‐based measures to improve the quality of life of people affected by dementia.
Key Points
The COVID‐19 pandemic has had a disproportionately negative impact on people affected by dementia, dementia services and research.
Further research on the impacts of the pandemic is needed, and directions for future work are identified in this study.
It is important to explore the potential benefits and risks of remote health and care, design inclusive and longitudinal studies to monitor longer‐term impacts, and report dementia‐specific findings within broader studies.
Objectives
Cognitive stimulation therapy (CST) is one of the few non‐pharmacological interventions for people living with dementia shown to be effective and cost‐effective. What are the current and ...future cost and health‐related quality of life implications of scaling‐up CST to eligible new cases of dementia in England?
Methods/design
Data from trials were combined with microsimulation and macrosimulation modelling to project future prevalence, needs and costs. Health and social costs, unpaid care costs and quality‐adjusted life years (QALYs) were compared with and without scaling‐up of CST and follow‐on maintenance CST (MCST).
Results
Scaling‐up group CST requires year‐on‐year increases in expenditure (mainly on staff), but these would be partially offset by reductions in health and care costs. Unpaid care costs would increase. Scaling‐up MCST would also require additional expenditure, but without generating savings elsewhere. There would be improvements in general cognitive functioning and health‐related quality of life, summarised in terms of QALY gains. Cost per QALY for CST alone would increase from £12,596 in 2015 to £19,573 by 2040, which is below the threshold for cost‐effectiveness used by the National Institute for Health and Care Excellence (NICE). Cost per QALY for CST and MCST combined would grow from £19,883 in 2015 to £30,906 by 2040, making it less likely to be recommended by NICE on cost‐effectiveness grounds.
Conclusions
Scaling‐up CST England for people with incident dementia can improve lives in an affordable, cost‐effective manner. Adding MCST also improves health‐related quality of life, but the economic evidence is less compelling.
Key points
There are few evidence‐based non‐pharmacological interventions for people living with dementia. Cognitive stimulation therapy (CST) is both effective and cost‐effective, but current availability is constrained
This paper reports the cost and health‐related quality of life implications of scaling‐up cognitive stimulation therapy to eligible people with dementia in England over a 25 year period
Scaling‐up CST would improve general cognitive functioning and health‐related quality of life, but also increase costs for health and social care services, and for family and other unpaid carers. Adding maintenance CST would also improve health‐related quality of life, with even greater cost increases
The higher costs of scaling‐up CST to the full eligible population over a 25 year period would be considered worth paying by reference to criteria used by the National Institute for Health and Care Excellence (NICE) in England. The economic evidence for adding maintenance CST is less compelling
Objective
National and global dementia plans have focused on the research ambition to develop a cure or disease‐modifying therapy by 2025, with the initial focus on investment in drug discovery ...approaches. We set out to develop complementary research ambitions in the areas of prevention, diagnosis, intervention, and care and strategies for achieving them.
Methods
Alzheimer's Society facilitated a taskforce of leading UK clinicians and researchers in dementia, UK funders of dementia research, people with dementia, and carer representatives to develop, using iterative consensus methodology, goals and recommendations to advance dementia research.
Results
The taskforce developed 5 goals and 30 recommendations. The goals focused on preventing future cases of dementia through risk reduction, maximising the benefit of a dementia diagnosis, improving quality of life, enabling the dementia workforce to improve practice, and optimising the quality and inclusivity of health and social care systems. Recommendations addressed gaps in knowledge and limitations in research methodology or infrastructure that would facilitate research in prioritised areas. A 10‐point action plan provides strategies for delivering the proposed research agenda.
Conclusions
By creating complementary goals for research that mirror the need to find effective treatments, we provide a framework that enables a focus for new investment and initiatives. This will support a broader and more holistic approach to research on dementia, addressing prevention, surveillance of population changes in risk and expression of dementia, the diagnostic process, diagnosis itself, interventions, social support, and care for people with dementia and their families.
Existing models for forecasting future care needs are limited in the risk factors included and in the assumptions made about incoming cohorts. We estimated the numbers of people aged 65 years or ...older in England and the years lived in older age requiring care at different intensities between 2015 and 2035 from the Population Ageing and Care Simulation (PACSim) model.
PACSim, a dynamic microsimulation model, combined three studies (Understanding Society, the English Longitudinal Study of Ageing, and the Cognitive Function and Ageing Study II) to simulate individuals' sociodemographic factors, health behaviours, 12 chronic diseases and geriatric conditions, and dependency (categorised as high 24-h care, medium daily care, or low less than daily dependency; or independent). Transition probabilities for each characteristic were estimated by modelling state changes from baseline to 2-year follow-up. Years in dependency states were calculated by Sullivan's method.
Between 2015 and 2035 in England, both the prevalence of and numbers of people with dependency will fall for young-old adults (65–74 years). For very old adults (≥85 years), numbers with low dependency will increase by 148·0% (range from ten simulations 140·0–152·0) and with high dependency will almost double (increase of 91·8%, range 87·3–94·1) although prevalence will change little. Older adults with medium or high dependency and dementia will be more likely to have at least two other concurrent conditions (increasing from 58·8% in 2015 to 81·2% in 2035). Men aged 65 years will see a compression of dependency with 4·2 years (range 3·9–4·2) of independence gained compared with life expectancy gains of 3·5 years (3·1–4·1). Women aged 65 years will experience an expansion of mainly low dependency, with 3·0 years (3·0–3·6) gained in life expectancy compared with 1·4 years (1·2–1·4) with low dependency and 0·7 years (0·6–0·8) with high dependency.
In the next 20 years, the English population aged 65 years or over will see increases in the number of individuals who are independent but also in those with complex care needs. This increase is due to more individuals reaching 85 years or older who have higher levels of dependency, dementia, and comorbidity. Health and social care services must adapt to the complex care needs of an increasing older population.
UK Economic and Social Research Council and the National Institute for Health Research.
Objectives
More people with dementia live in low‐ and middle‐income countries (LMICs) than in high‐income countries, but best‐practice care recommendations are often based on studies from high‐income ...countries. We aimed to map the available evidence on dementia interventions in LMICs.
Methods
We systematically mapped available evidence on interventions that aimed to improve the lives of people with dementia or mild cognitive impairment (MCI) and/or their carers in LMICs (registered on PROSPERO: CRD42018106206). We included randomised controlled trials (RCTs) published between 2008 and 2018. We searched 11 electronic academic and grey literature databases (MEDLINE, EMBASE, PsycINFO, CINAHL Plus, Global Health, World Health Organization Global Index Medicus, Virtual Health Library, Cochrane CENTRAL, Social Care Online, BASE, MODEM Toolkit) and examined the number and characteristics of RCTs according to intervention type. We used the Cochrane risk of bias 2.0 tool to assess the risk of bias.
Results
We included 340 RCTs with 29,882 (median, 68) participants, published 2008–2018. Over two‐thirds of the studies were conducted in China (n = 237, 69.7%). Ten LMICs accounted for 95.9% of included RCTs. The largest category of interventions was Traditional Chinese Medicine (n = 149, 43.8%), followed by Western medicine pharmaceuticals (n = 109, 32.1%), supplements (n = 43, 12.6%), and structured therapeutic psychosocial interventions (n = 37, 10.9%). Overall risk of bias was judged to be high for 201 RCTs (59.1%), moderate for 136 (40.0%), and low for 3 (0.9%).
Conclusions
Evidence‐generation on interventions for people with dementia or MCI and/or their carers in LMICs is concentrated in just a few countries, with no RCTs reported in the vast majority of LMICs. The body of evidence is skewed towards selected interventions and overall subject to high risk of bias. There is a need for a more coordinated approach to robust evidence‐generation for LMICs.
Key points
While the majority of people with dementia reside in low‐ and middle‐income countries (LMICs), it is not known what types of interventions have been studied in these settings and how effective they are.
We conducted the first comprehensive mapping study of interventions for people with dementia or mild cognitive impairment (MCI) and/or their carers in LMICs.
This high‐level overview of dementia intervention research in LMICs identified the following gaps: dementia intervention research is highly concentrated in just a few LMICs, and skewed towards Traditional Chinese Medicine, Western pharmaceuticals, and supplements, with comparatively little evidence generated on interventions for carers.
Lack of robust and locally relevant evidence on effective interventions presents a substantial challenge to designing evidence‐based treatment and care systems that help people with dementia or MCI and their carers to live better lives.
Context: COVID-19 has disproportionately impacted mortality in English care homes.Objectives: To examine COVID-19 policies for care homes in England and to describe providers’ experiences of those ...policies in May and June 2020.Methods: Mixed methods including policy analysis and an anonymous online survey of English care home providers, recruited using webinars and WhatsApp groups about their experiences of funding, testing, PPE, isolation and staffing until the end of May and early June 2020.Findings: Although social care policies in England have aligned with those advised by the World Health Organization, they were arguably delayed and were not implemented effectively. Testing had taken place in 70% of care homes surveyed but only 36% of residents had been tested, of whom 16% were positive. Managers were unable to effectively implement isolation policies and reported that workforce and funding support did not always reach them. Guidance changed frequently and was conflicting and could not always be implemented, for example when personal protection equipment was extremely expensive and difficult to source.Limitations: Although this was not a representative sample, care homes responded from across the country and we report the most consistent themes. Potentially, care homes that found it harder to implement national guidance may have been more inclined to respond to our survey than those who more easily changed practice, although those with outbreaks may also have had less capacity to respond. Some aspects of policy will have also changed since early June.Implications: Despite policies that were put in place, care homes amongst our survey respondents were still unable to access sufficient funding, testing, PPE, workforce support and practical support to isolate residents by the end of May and early June. Future cross-country policy analyses must examine policy implementation as well as content.
Context: Unpaid carers are the backbone of long-term care (LTC) systems around the world. The COVID-19 pandemic has further increased the pressure many unpaid carers experience; however, their ...experience has been largely absent from public reporting.Objective: We aim to map the available evidence of the impacts of COVID-19 on unpaid carers of adults (>18 years) with LTC needs as well as of measures implemented to mitigate these effects and how well they have worked.Method: We conducted a rapid review of the academic and grey literature on unpaid carers of adults with LTC needs during the COVID-19 pandemic, covering the period until November 2020.Findings: We identified six key themes that highlight the impacts of COVID-19 on unpaid carers of people living in the community. These are: care commitment, concerns related to COVID-19, availability of formal and informal support, financial implications, carer health and well-being, and carers’ adaptability. In addition, we captured aspects identified by unpaid carers supporting people in residential care settings under the theme ‘carers of people in residential settings’. Finally, we reported evidence of measures implemented to mitigate the impacts on carers. This included the use of technology and the receipt of financial assistance and support for working carers.Limitations: The evidence reported in this review is based largely on cross-sectional data and some of the data reported relies on convenience samples.Implications: We highlight the financial and health impacts that many unpaid carers experience. Given the vital support carers provide to adults with LTC needs, policy makers should consider supporting unpaid carers to mitigate the negative impacts on their lives.
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