The costs of dementia in England Wittenberg, Raphael; Knapp, Martin; Hu, Bo ...
International journal of geriatric psychiatry,
July 2019, Volume:
34, Issue:
7
Journal Article
Peer reviewed
Open access
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.
Globally and locally, ongoing demographic, sociocultural 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 societal 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 international 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 conditions, 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 education 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.
Cognitive Stimulation Therapy (CST) is effective and cost-effective for people with mild-to-moderate dementia when delivered biweekly over 7 weeks.
To examine whether longer-term (maintenance) CST is ...cost-effective when added to usual care.
Cost-effectiveness analysis within multicenter, single-blind, pragmatic randomized controlled trial; subgroup analysis for people taking acetylcholinesterase inhibitors (ACHEIs). A total of 236 participants with mild-to-moderate dementia received CST for 7 weeks. They were randomized to either weekly maintenance CST added to usual care or usual care alone for 24 weeks.
Although outcome gains were modest over 6 months, maintenance CST appeared cost-effective when looking at self-rated quality of life as primary outcome, and cognition (MMSE) and proxy-rated quality-adjusted life years as secondary outcomes. CST in combination with ACHEIs offered cost-effectiveness gains when outcome was measured as cognition.
Continuation of CST is likely to be cost-effective for people with mild-to-moderate dementia.
Abstract
Background
The number of older people with dementia and the cost of caring for them, already substantial, are expected to rise due to population ageing.
Objective
This study makes ...projections of the number of older people with dementia receiving unpaid care or using care services and associated costs in England.
Methods
The study drew on up-to-date information for England from multiple sources including data from the CFASII study, output from the PACSim dynamic microsimulation model, Office for National Statistics population projections and data from the MODEM cohort study. A simulation model was built to make the projections.
Results
We project that the number of older people with dementia will more than double in the next 25 years. The number receiving unpaid or formal care is projected to rise by 124%, from 530,000 in 2015 to 1,183,000 in 2040. Total cost of dementia is projected to increase from £23.0 billion in 2015 to £80.1 billion in 2040, and average cost is projected to increase from £35,100 per person per year in 2015 to £58,900 per person per year in 2040. Total and average costs of social care are projected to increase much faster than those of healthcare and unpaid care.
Conclusion
The numbers of people with dementia and associated costs of care will rise substantially in the coming decades, unless new treatments enable the progression of the condition to be prevented or slowed. Care and support for people with dementia and their family carers will need to be increased.
Abstract
Background
models projecting future disease burden have focussed on one or two diseases. Little is known on how risk factors of younger cohorts will play out in the future burden of ...multi-morbidity (two or more concurrent long-term conditions).
Design
a dynamic microsimulation model, the Population Ageing and Care Simulation (PACSim) model, simulates the characteristics (sociodemographic factors, health behaviours, chronic diseases and geriatric conditions) of individuals over the period 2014–2040.
Population
about 303,589 individuals aged 35 years and over (a 1% random sample of the 2014 England population) created from Understanding Society, the English Longitudinal Study of Ageing, and the Cognitive Function and Ageing Study II.
Main outcome measures
the prevalence of, numbers with, and years lived with, chronic diseases, geriatric conditions and multi-morbidity.
Results
between 2015 and 2035, multi-morbidity prevalence is estimated to increase, the proportion with 4+ diseases almost doubling (2015:9.8%; 2035:17.0%) and two-thirds of those with 4+ diseases will have mental ill-health (dementia, depression, cognitive impairment no dementia). Multi-morbidity prevalence in incoming cohorts aged 65–74 years will rise (2015:45.7%; 2035:52.8%). Life expectancy gains (men 3.6 years, women: 2.9 years) will be spent mostly with 4+ diseases (men: 2.4 years, 65.9%; women: 2.5 years, 85.2%), resulting from increased prevalence of rather than longer survival with multi-morbidity.
Conclusions
our findings indicate that over the next 20 years there will be an expansion of morbidity, particularly complex multi-morbidity (4+ diseases). We advocate for a new focus on prevention of, and appropriate and efficient service provision for those with, complex multi-morbidity.
Background
Dementia is a national priority and this research addresses the Prime Minister’s commitment to dementia research as demonstrated by his 2020 challenge and the new UK Dementia Research ...Institute. In the UK > 800,000 older people have dementia. It has a major impact on the lives of people with dementia themselves, on the lives of their family carers and on services, and costs the nation £26B per year. Pharmacological cures for dementias such as Alzheimer’s disease are not expected before 2025. If no cure can be found, the ageing demographic will result in 2 million people living with dementia by 2050. People with dementia lose much more than just their memory and their daily living skills; they can also lose their independence, their dignity and status, their confidence and morale, and their roles both within the family and beyond. They can be seen as a burden by society, by their families and even by themselves, and may feel unable to contribute to society. This programme of research aims to find useful interventions to improve the quality of life of people with dementia and their carers, and to better understand how people with dementia can be supported at home and avoid being admitted to hospital.
Objectives
(1) To develop and evaluate the maintenance cognitive stimulation therapy (MCST) for people with dementia; (2) to develop the Carer Supporter Programme (CSP), and to evaluate the CSP and Remembering Yesterday, Caring Today (RYCT) for people with dementia both separately and together in comparison with usual care; and (3) to develop a home treatment package (HTP) for dementia, to field test the HTP in practice and to conduct an exploratory trial.
Methods
(1) The MCST programme was developed for people with dementia based on evidence and qualitative work. A randomised controlled trial (RCT) with a pilot study of MCST plus acetylcholinesterase inhibitors (AChEIs) compared MCST with cognitive stimulation therapy (CST) only. The MCST implementation study conducted a trial of outreach compared with usual care, and assessed implementation in practice. (2) The CSP was developed based on existing evidence and the engagement of carers of people with dementia. The RCT (with internal pilot) compared the CSP and reminiscence (RYCT), both separately and in combination, with usual care. (3) A HTP for dementia, including the most promising interventions and components, was developed by systematically reviewing the literature and qualitative studies including consensus approaches. The HTP for dementia was evaluated in practice by conducting in-depth field testing.
Results
(1) Continuing MCST improved quality of life and improved cognition for those taking AChEIs. It was also cost-effective. The CST implementation studies indicated that many staff will run CST groups following a 1-day training course, but that outreach support helps staff go on to run maintenance groups and may also improve staff sense of competence in dementia care. The study of CST in practice found no change in cognition or quality of life at 8-month follow-up. (2) The CSP/RYCT study found no benefits for family carers but improved quality of life for people with dementia. RYCT appeared beneficial for the quality of life of people with dementia but at an excessively high cost. (3) Case management for people with dementia reduces admissions to long-term care and reduces behavioural problems. In terms of managing crises, staff suggested more costly interventions, carers liked education and support, and people with dementia wanted family support, home adaptations and technology. The easy-to-use home treatment manual was feasible in practice to help staff working in crisis teams to prevent hospital admissions for people with dementia.
Limitations
Given constraints on time and funding, we were unable to compete the exploratory trial of the HTP package or to conduct an economic evaluation.
Future research
To improve the care of people with dementia experiencing crises, a large-scale clinical trial of the home treatment manual is needed.
Conclusion
There is an urgent need for effective psychosocial interventions for dementia. MCST improved quality of life and was cost-effective, with benefits to cognition for those on AChEIs. MCST was feasible in practice. Both CSP and RYCT improved the quality of life of people with dementia, but the overall costs may be too high. The HTP was useful in practice but requires evaluation in a full trial. Dementia care research may improve the lives of millions of people across the world.
Trial registrations
Current Controlled Trials ISRCTN26286067 (MCST), ISRCTN28793457 (MCST implementation) and ISRCTN37956201 (CSP/RYCT).
Funding
This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in
Programme Grants for Applied Research
; Vol. 5, No. 5. See the NIHR Journals Library website for further project information.
Abstract The projected increase in older dependent adults will continue straining formal care services whilst increasing the reliance on unpaid carers, in England and internationally. While ...motivations and willingness to care among unpaid carers have been explored, expectations around the caregiving role remain under‐researched. This article delves into expectations of middle‐aged individuals around providing care to an older parent in the future. Data collected through six focus groups with 35 mid‐life individuals, a mix of individuals with and without caring experience, were analysed thematically, cross‐sectionally, and with reference to different phases in the caregiving trajectory. Participants showed predicted, in some cases normative, expectations about taking on the role of carer for an older parent. Such expectations were rooted in emotional and socio‐cultural factors and influenced how people self‐identified as a carer. Expectations about what the role would entail were unformed: they were described as conditional on the uncertain and changing care needs of the older parents (‘caregiving creep’). Those with caring experience highlighted that, in hindsight, their prior expectations did not match their actual experience of the role, requiring greater time commitment and impacting their life in ways they had not anticipated. When thinking about the future, participants envisaged stepped changes in care arrangements to meet increasing, albeit uncertain, care needs, but acknowledged their lack of awareness around the care options available to them. Policies aiming to improve general awareness about caregiving, support early identification of carers, and address their information need throughout their caregiving journey should be a priority.
Anxiety is common and problematic in dementia, yet there is a lack of effective treatments.
To develop a cognitive-behavioural therapy (CBT) manual for anxiety in dementia and determine its ...feasibility through a randomised controlled trial.
A ten-session CBT manual was developed. Participants with dementia and anxiety (and their carers) were randomly allocated to CBT plus treatment as usual (TAU) (n = 25) or TAU (n = 25). Outcome and cost measures were administered at baseline, 15 weeks and 6 months.
At 15 weeks, there was an adjusted difference in anxiety (using the Rating Anxiety in Dementia scale) of (-3.10, 95% CI -6.55 to 0.34) for CBT compared with TAU, which just fell short of statistical significance. There were significant improvements in depression at 15 weeks after adjustment (-5.37, 95% CI -9.50 to -1.25). Improvements remained significant at 6 months. CBT was cost neutral.
CBT was feasible (in terms of recruitment, acceptability and attrition) and effective. A fully powered RCT is now required.
Objectives: Identify if cost-effectiveness of Maintenance Cognitive Simulation Therapy (MCST) differs by type of living arrangement and cognitive ability of the person with dementia. Next, a value of ...information analysis is performed to inform decisions about future research.
Methods: Incremental cost-effectiveness analysis applying seemingly unrelated regressions using data from a multicentre RCT of MCST versus treatment as usual in a population which had already received 7 weeks of CST for dementia (ISRCTN: 26286067). The findings from the cost-effectiveness analysis are used to inform a value of information analysis.
Results: The results are dependent upon how quality adjusted life years (QALYs) are measured. MCST might be cost-effective compared to standard treatment for those who live alone and those with higher levels of cognitive functioning. If a further RCT was to be conducted for this sub-group of the population, value of information analysis suggests a total sample of 48 complete cases for both sub-groups would be required for a two-arm trial. The expected net gain of conducting this future research is £920 million.
Conclusion: Preliminary results suggest that MCST may be most cost-efficient for people with dementia who live alone and/or who have higher cognition. Future research in this area is needed.
Abstract
Ensuring distributive fairness in the long-term care sector is vitally important in the context of global population ageing and rising care needs. This study, part of the DETERMIND ...(DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) programme, investigates socioeconomic inequality and inequity in the utilisation of long-term care for older people with and without dementia in England. The data come from three waves of the English Longitudinal Study of Ageing (ELSA, Waves 6–8, N = 16,458). We find that older people with dementia have higher levels of care needs and a lower socioeconomic status than those without dementia. The distribution of formal and informal care is strongly pro-poor. When care needs are controlled for, there is no significant inequality of formal or informal care among people with dementia, nor of informal care among people without dementia, but there is a significant pro-rich distribution of formal care among people without dementia. Unmet care needs are significantly concentrated among poorer people, both with and without dementia. We argue that the long-term care system in England plays a constructive role in promoting socioeconomic equality of long-term care for people with dementia, but support for older people with lower financial means and substantial care needs remains insufficient. Increased government support for older people is needed to break the circle between care inequality and health inequality.
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