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The Economics of Dementia 
Care 
Austrian Health Economics Association (ATHEA) 
1st Conference 
Vienna, 28th November 2014...
Acknowledgements: 
• Quite a few of the slides here have been 
borrowed from presentations by Martin 
Knapp, who has kindl...
The future is by definition uncertain… 
… but one thing we know is that we will need to 
spend much more on the care of pe...
WHY DEMENTIA?
Why Dementia? 
1. The burden of disability associated with 
dementia is rising faster than any other cause. 
2. Significan...
The slides that follow are from an infographic 
produced by the Alzheimer’s Society, based on 
the very recent Dementia UK...
ECONOMICS AND DEMENTIA CARE
The Production of Welfare 
Resource Collection: 
General taxation 
Social Insurance 
Private Insurance 
Income & savings 
...
Policy / practice themes 
Resource Collection: 
General taxation 
Social Insurance 
Private Insurance 
Income & savings 
U...
Dementia: great case for Health & Social Care 
Integration 
Source: 
http://pathways. 
nice.org.uk/path 
ways/dementia
THE KEY QUESTION TODAY IN 
DEMENTIA CARE:
How can we afford to meet the future needs of 
people with dementia and their carers? 
1. Finding ways of decreasing the f...
1. Decreasing the future numbers of 
people affected by dementia 
• Helping/encouraging people to adopt 
healthier lifesty...
Dementia Risk Factors: 
Source: http://www.inmindd.eu/media-centre/dementia-information- 
in-mindd/
Modifying Risk Factors: 
These are the known risk factors for 
development of Alzheimer’s disease: 
• Diabetes 
• Midlife ...
2. Ensuring we have adequate 
financing mechanisms 
• 2/3 of the £26.3 billion cost of dementia in UK 
shouldered by carer...
Determinants of future 
dementia care costs 
• Demographic changes. 
• Changes in prevalence (by severity). 
• Availabilit...
Public spending on LTC as % of GDP, 2010-2060. 
Base case scenario 
9 
8 
7 
6 
5 
4 
3 
2 
1 
0 
BE BG CZ DK DE EE IE EL ...
Public spending on LTC as % of GDP, 2010-2060. 
Base case and Coverage Convergence scenario. 
10 
9 
8 
7 
6 
5 
4 
3 
2 
...
LTC systems and economic sustainability 
• Although demography is a major driver of LTC 
expenditure, other changes, such ...
3. Making sure we spend well on 
dementia care (1) 
• Martin Knapp distinguishes between “good” and “bad” 
costs of dement...
3. Making sure we spend well on 
dementia care (2) 
We can use evidence from research to help shift 
the balance from bad ...
MODEM 
A comprehensive approach to 
modelling outcome and costs impacts 
of interventions for dementia 
2014-2018 
@MODEMP...
A collaborative study 
LSE (PSSRU) 
• Martin Knapp 
• Adelina Comas-Herrera 
• Raphael Wittenberg 
• Bayo Adelaja 
• Marga...
The challenge 
We hope to find a cure for dementia, but even if it 
is possible, it is still quite a few years away. In th...
Research questions 
1. How many people with dementia will there 
be from now to 2040; and what will be the 
costs of their...
Interventions, costs and outcomes 
• Interventions of interest 
– Prevention (e.g. lifestyle, nutrition, exercise etc.) 
–...
Intervention - e.g. CST 
• Intervention 
– Cognitive stimulation therapy for 8 weeks 
– Includes reality orientation, remi...
Intervention - e.g. START 
• Intervention 
– Individual therapy programme (8 sessions with 
psychology graduate + manual) ...
Methods 
Engage with people with dementia, carers and other stakeholders at all stages. 
Project: 
– N of people with deme...
Epidemiological model 
• baseline characteristics: socio-demographic, 
lifestyle and disease (CFAS II & ELSA, 65+) 
projec...
Interventions modelling 
• led by PSSRU (LSE) 
• Models of the impact of different interventions 
on service use, costs an...
Macro-simulation model 
PSSRU macro‐simulation projection model: 
• future numbers of people with dementia 
• severity and...
And finally – a legacy tool 
We will develop a publicly available legacy 
model (and associated media) for others to use. ...
Some research challenges… 
• We are still not very good at measuring the 
indirect costs of care, particularly unpaid care...
Blog Posts: 
How unpaid carers “pay” the costs of dementia, LSE 
Health and Social Care Blog, 12 September 2014, by 
Adeli...
Related projects 
• Prime Minister’s Challenge 
• Dementia Scenarios Modelling: G7 Dementia Legacy Event 
(an advance on M...
Thank you for your attention 
• http://www.modem-dementia.org.uk/ 
• On Twitter: @MODEMproject 
• Email: a.comas@lse.ac.uk
Economics of dementia care adelina comas herrera athea vienna 28 november 14
Economics of dementia care adelina comas herrera athea vienna 28 november 14
Economics of dementia care adelina comas herrera athea vienna 28 november 14
Economics of dementia care adelina comas herrera athea vienna 28 november 14
Economics of dementia care adelina comas herrera athea vienna 28 november 14
Economics of dementia care adelina comas herrera athea vienna 28 november 14
Economics of dementia care adelina comas herrera athea vienna 28 november 14
Economics of dementia care adelina comas herrera athea vienna 28 november 14
Economics of dementia care adelina comas herrera athea vienna 28 november 14
Economics of dementia care adelina comas herrera athea vienna 28 november 14
Economics of dementia care adelina comas herrera athea vienna 28 november 14
Economics of dementia care adelina comas herrera athea vienna 28 november 14
Economics of dementia care adelina comas herrera athea vienna 28 november 14
Economics of dementia care adelina comas herrera athea vienna 28 november 14
Economics of dementia care adelina comas herrera athea vienna 28 november 14
Economics of dementia care adelina comas herrera athea vienna 28 november 14
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Economics of dementia care adelina comas herrera athea vienna 28 november 14

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Economics of Dementia Care: the MODEM Project

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Economics of dementia care adelina comas herrera athea vienna 28 november 14

  1. 1. The Economics of Dementia Care Austrian Health Economics Association (ATHEA) 1st Conference Vienna, 28th November 2014 Adelina Comas-Herrera Personal Social Services Research Unit (PSSRU) London School of Economics and Political Science a.comas@lse.ac.uk @adelinacohe
  2. 2. Acknowledgements: • Quite a few of the slides here have been borrowed from presentations by Martin Knapp, who has kindly shared them with me. • I also acknowledge infographics kindly provided by the Alzheimer’s Society. • The opinions, comments and interpretations of all the material presented here do not reflect the views of my current and former co-authors and research funders.
  3. 3. The future is by definition uncertain… … but one thing we know is that we will need to spend much more on the care of people with dementia than we are spending today. 3
  4. 4. WHY DEMENTIA?
  5. 5. Why Dementia? 1. The burden of disability associated with dementia is rising faster than any other cause. 2. Significant and increasing % of health spending. Largest cause of need of Long-Term Care. 3. Huge costs to society, and in particular to families of people with dementia
  6. 6. The slides that follow are from an infographic produced by the Alzheimer’s Society, based on the very recent Dementia UK, 2014 edition report.
  7. 7. ECONOMICS AND DEMENTIA CARE
  8. 8. The Production of Welfare Resource Collection: General taxation Social Insurance Private Insurance Income & savings Unpaid care Purchasing Budget Social Care Health Care Others… Opportunity Costs Commissioning Provider Budget User Needs & Preferences Resource Inputs: Staff Buildings Consumables Equipment Unpaid carers Intermediate Outputs: Service volume Quality of care Casemix “Non-resource” Inputs Entorn social Característiques individuals Actituts Final Outcomes Change in user health status, quality of life… Family & carer effects Societal impact Adapted from: “Production of Welfare Framework”, Knapp M (1984) The Economics of Social Care, Macmillan, London.
  9. 9. Policy / practice themes Resource Collection: General taxation Social Insurance Private Insurance Income & savings Unpaid care Purchasing Budget Social Care Health Care Others… Opportunity Costs Commissioning Provider Budget User Needs & Preferences Resource Inputs: Staff Buildings Consumables Equipment Unpaid carers Intermediate Outputs: Service volume Quality of care Casemix “Non-resource” Inputs Entorn social Característiques individuals Actituts Final Outcomes Change in user health status, quality of life… Family & carer effects Societal impact Adapted from: “Production of Welfare Framework”, Knapp M (1984) The Economics of Social Care, Macmillan, London.
  10. 10. Dementia: great case for Health & Social Care Integration Source: http://pathways. nice.org.uk/path ways/dementia
  11. 11. THE KEY QUESTION TODAY IN DEMENTIA CARE:
  12. 12. How can we afford to meet the future needs of people with dementia and their carers? 1. Finding ways of decreasing the future numbers of people affected by dementia 2. Ensure we have adequate care financing mechanisms 3. Make sure that we “spend well” on care
  13. 13. 1. Decreasing the future numbers of people affected by dementia • Helping/encouraging people to adopt healthier lifestyles to reduce the risks. • Better management of other chronic health conditions. • Drugs that moderate symptoms and, eventually, finding a disease-modifying treatment!
  14. 14. Dementia Risk Factors: Source: http://www.inmindd.eu/media-centre/dementia-information- in-mindd/
  15. 15. Modifying Risk Factors: These are the known risk factors for development of Alzheimer’s disease: • Diabetes • Midlife hypertension • Midlife obesity • Physical inactivity • Depression • Smoking • Low educational attainment Norton et al Lancet Neurology 2014 “Around a third of AD cases worldwide might be attributable to potentially modifiable risk factors”
  16. 16. 2. Ensuring we have adequate financing mechanisms • 2/3 of the £26.3 billion cost of dementia in UK shouldered by carers and people with dementia (Dementia UK 2014, published by the Alzheimer’s Society). • Public expenditure on social care in England has not been keeping up with increased need* *Between 2005/6 and 2012/13, after standardising for changes in need it has been estimated that net social care expenditure decreased by almost £1.5 billion, as a result of reductions in coverage: Fernandez J-L. Snell T. and Wistow G. (2013). Changes in the Patterns of Social Care Provision in England: 2005/6 to 2012/13. PSSRU Discussion Paper 2867. http://www.pssru.ac.uk/archive/pdf/dp2867.pdf
  17. 17. Determinants of future dementia care costs • Demographic changes. • Changes in prevalence (by severity). • Availability (and propensity to provide) unpaid care. • Structure of the care system. • Financing system: generosity of public finance • Relative price of care and other goods and services. • Economic growth and other macroeconomic factors. • Values and public expectations about the quality, range and level of care. • Other factors? Quality/adaptability of housing, pensions… 32
  18. 18. Public spending on LTC as % of GDP, 2010-2060. Base case scenario 9 8 7 6 5 4 3 2 1 0 BE BG CZ DK DE EE IE EL ES FR IT CY LV LT LU HU MT NL AT PL PT RO SI SK FI SE UK NO 2010 2060 base case Source: The 2012 Ageing Report: Economic and budgetary projections for the EU27 Member States (2010-2060). European Commission. Adelina Comas-Herrera
  19. 19. Public spending on LTC as % of GDP, 2010-2060. Base case and Coverage Convergence scenario. 10 9 8 7 6 5 4 3 2 1 0 BE BG CZ DK DE EE IE EL ES FR IT CY LV LT LU HU MT NL AT PL PT RO SI SK FI SE UK NO 2010 2060 base case 2060 coverage convergence Adelina Comas-Herrera Source: The 2012 Ageing Report: Economic and budgetary projections for the EU27 Member States (2010-2060). European Commission.
  20. 20. LTC systems and economic sustainability • Although demography is a major driver of LTC expenditure, other changes, such as shifts from unpaid care to paid care may have an even bigger impact in a number of European countries. • Affordability is largely measured as a % of GDP (mostly from “official” economic forecasts), different rates of economic growth will be the key to what can or cannot be afforded.
  21. 21. 3. Making sure we spend well on dementia care (1) • Martin Knapp distinguishes between “good” and “bad” costs of dementia: • “bad costs: care and treatment due to – late or missing diagnosis – unavailability of good quality – unplanned crisis admission into hospital, or – breakdown in community support resulting in earlier admission into a care home than necessary”. • “good costs: Appropriate and effective treatment and care responses to needs of individual and carers, following consultation around their preferences”. http://www.pssru.ac.uk/blogs/blog/what-does-dementia- cost/ by Martin Knapp
  22. 22. 3. Making sure we spend well on dementia care (2) We can use evidence from research to help shift the balance from bad to good costs.
  23. 23. MODEM A comprehensive approach to modelling outcome and costs impacts of interventions for dementia 2014-2018 @MODEMProject
  24. 24. A collaborative study LSE (PSSRU) • Martin Knapp • Adelina Comas-Herrera • Raphael Wittenberg • Bayo Adelaja • Margaret Dangoor • Josie Dixon • Bo Hu • Daniel Lombard • Klara Lorenz (PhD student) • David McDaid • Amritpal Rehill LSE (Social Policy Dept) • Mauricio Avendano • Emily Grundy • Sanna Read Southampton University • Ann Bowling • Jitka Pikhartova Newcastle University • Carol Jagger • Andrew Kingston Sussex University • Sube Banerjee • Nicolas Farina International Longevity Centre-UK • Sally-Marie Bamford • Sally Greengross
  25. 25. The challenge We hope to find a cure for dementia, but even if it is possible, it is still quite a few years away. In the meantime, we can do much through prevention and improving care. How can we provide high quality care and support for people with dementia and their carers in ways that are: • acceptable to them • at a cost considered by society to be affordable.
  26. 26. Research questions 1. How many people with dementia will there be from now to 2040; and what will be the costs of their treatment, care and support under present arrangements? 2. How do costs and outcomes vary with characteristics and circumstances of people with dementia and carers? 3. How could future costs and outcomes change if evidence-based interventions were more widely implemented?
  27. 27. Interventions, costs and outcomes • Interventions of interest – Prevention (e.g. lifestyle, nutrition, exercise etc.) – Treatments (e.g. medications, cognitive stimulation and other therapies) – Care and support arrangements (e.g. telecare/tele-health, respite, carer training and support programmes, training for care staff) • Costs and outcomes – All resource impacts (health, social care and other), including resources of people with dementia, families and communities. – Quality of life, clinical and lifestyle effects – Carer outcomes
  28. 28. Intervention - e.g. CST • Intervention – Cognitive stimulation therapy for 8 weeks – Includes reality orientation, reminiscence therapy) compared to usual care and support. • Costs and outcomes (8-week follow-up) – CST had better outcomes (cognition and QOL), but also marginally higher costs – CST looks more cost-effective than usual care – Maintenance CST (another 24 weeks) – good QOL and ADL outcomes – … also looks cost-effective (not published yet)
  29. 29. Intervention - e.g. START • Intervention – Individual therapy programme (8 sessions with psychology graduate + manual) – Techniques to understand and manage behaviours of person they cared for, change unhelpful thoughts, promote acceptance, improve communication, plan for future, relax, engage in meaningful enjoyable activities. • Costs and outcomes (8-month & 24-month follow-up) – More effective than standard care and no more costly (from NHS and societal perspectives) – at 8m and 24m – Cost-effective when looking at costs and outcomes for carers – again over both 8m and 24m – Reduces care home admission rate for people with dementia over 24m
  30. 30. Methods Engage with people with dementia, carers and other stakeholders at all stages. Project: – N of people with dementia over the period to 2040 – family or other unpaid support available to them – costs and outcomes of services and unpaid support. Review evidence of effective and cost-effective interventions for people with dementia and carers (incl. on-going studies) Collect data to cross-walk between measures in studies and population surveys Gather experiential evidence from people with dementia, carers Simulate wider roll-out of evidence-based interventions on outcomes, costs, patterns of expenditure Legacy model so that commissioners, providers, advocacy groups, individuals and families can access our findings and methods, and make their own projections of needs for care and support, outcomes and costs. 45
  31. 31. Epidemiological model • baseline characteristics: socio-demographic, lifestyle and disease (CFAS II & ELSA, 65+) projected to 2040 • interventions that prevent or delay cognitive and/or functional impairment • tabulations of expected duration in different health states in presence of dementia, with w/out other diseases and by key characteristics, e.g. gender, age) • led by Prof. Carol Jagger, Newcastle University
  32. 32. Interventions modelling • led by PSSRU (LSE) • Models of the impact of different interventions on service use, costs and outcomes • Based on review of evidence • Will also estimate lifetime costs of care for different sets of needs and circumstances given: – existing treatment and care pathways – alternative care pathways (wider roll-out of interventions)
  33. 33. Macro-simulation model PSSRU macro‐simulation projection model: • future numbers of people with dementia • severity and physical disability (CFAS II) • long‐term care service use • associated public expenditure • quality of life (outcomes) under variant assumptions about: • trends in mortality rates • cognitive impairment • supply of informal care • availability of effective interventions • unit costs of care.
  34. 34. And finally – a legacy tool We will develop a publicly available legacy model (and associated media) for others to use. Commissioners, providers, advocacy groups, individuals and families will be able to access our findings and methods, and make their own projections of needs for care and support, outcomes and costs.
  35. 35. Some research challenges… • We are still not very good at measuring the indirect costs of care, particularly unpaid care • What happens to outcomes and costs when you “stack-up” interventions? • Outcomes: combining the outcomes of people with dementia and those of carers • Understanding better the impact of changes in severity of dementia and quality of life
  36. 36. Blog Posts: How unpaid carers “pay” the costs of dementia, LSE Health and Social Care Blog, 12 September 2014, by Adelina Comas-Herrera Involvement in PSSRU’s MODEM project, LSE Health and Social Care Blog, 14 September 2014, by Margaret Dangoor What does dementia cost?, Personal Social Services Research Unit Blog, 12 September 2014, by Martin Knapp
  37. 37. Related projects • Prime Minister’s Challenge • Dementia Scenarios Modelling: G7 Dementia Legacy Event (an advance on MODEM?) – Knapp M, Comas-Herrera A, Wittenberg R, Hu B, King D, Rehill A, Adelaja B (2014) Scenarios of dementia care: what are the impacts on cost and quality of life? Report to the Department of Health, Personal Social Services Research Unit, London • Cost of Dementia Study for the Azheimer’s Society – Prince M, Knapp M, Guerchet M, McCrone P, Prina M, Comas- Herrera A, Wittenberg R, Adelaja B, Hu B, King D, Rehill A, Salimkumar D (2014) Dementia UK: second edition – overview, Alzheimer’s Society, London
  38. 38. Thank you for your attention • http://www.modem-dementia.org.uk/ • On Twitter: @MODEMproject • Email: a.comas@lse.ac.uk

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