Economics of Dementia Care: the MODEM Project

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. 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. 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. WHY DEMENTIA?

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. The slides that follow are from an infographic
produced by the Alzheimer’s Society, based on
the very recent Dementia UK, 2014 edition
report.

22. ECONOMICS AND DEMENTIA CARE

23. 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.

24. 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.

25. Dementia: great case for Health & Social Care
Integration
Source:
http://pathways.
nice.org.uk/path
ways/dementia

26. THE KEY QUESTION TODAY IN
DEMENTIA CARE:

27. 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

28. 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!

29. Dementia Risk Factors:
Source: http://www.inmindd.eu/media-centre/dementia-information-
in-mindd/

30. 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”

31. 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

32. 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

33. 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

34. 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.

35. 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.

36. 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

37. 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.

38. MODEM
A comprehensive approach to
modelling outcome and costs impacts
of interventions for dementia
2014-2018
@MODEMProject

39. 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

40. 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.

41. 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?

42. 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

43. 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)

44. 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

45. 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

47. 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

48. 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)

49. 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.

50. 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.

51. 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

52. 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

53. 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

54. Thank you for your attention
• http://www.modem-dementia.org.uk/
• On Twitter: @MODEMproject
• Email: a.comas@lse.ac.uk