Disability, Dementia and the Future Costs of Long-Term Care

1. Disability, Dementia and the Future Costs of Long-Term Care Adelina Comas-Herrera In collaboration with Raphael Wittenberg, Linda Pickard, Derek King, Juliette Malley and other colleagues Personal Social Services Research Unit London School of Economics and Political Science Contact: a.comas@lse.ac.uk

2. Projecting the costs of long-term care into the future • We know we will get the wrong answer, unless we manage to develop perfect foresight! • But it is still useful to make projections: • To understand the drivers of change. • Not all variables involve the same level of uncertainty. • Sensitivity analysis is vital to understand the robustness of projections. This is particularly important when making projections about different ways of financing LTC that may affect policy decisions.

3. Funnel of doubt: Long-term care expenditure in the UK as % of GDP

4. Determinants of future LTC costs • Demographic changes. • Trends in functional dependency/cognitive impairment. • Availability (and propensity to provide) informal care. • Structure of the LTC system and patterns of care. • Financing system. • Relative price of LTC 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…

5. Making projections of future LTC expenditure: the PSSRU aggregate model • The PSSRU aggregate model aims to make projections of: • Numbers of disabled older people • Long-term care services and disability benefits • Long-term care expenditure: public and private • Social care workforce • The results are highly sensitive to changes in the assumptions made about future disability rates. • What should we assume about future disability rates?

6. The PSSRU LTC CI model • Based on the England PSSRU aggregate LTC model • Data from MRC-CFAS and PSSRU surveys of residents in care homes is used to estimate the prevalence of CI and the proportion of care users who have CI. • Older people and users of services are divided into four disability groups: • No CI or functional disability (FD) • FD but no CI • CI only (used as proxy for mild stages of dementia) • CI and FD (proxy for moderate/severe dementia) • Simulates the impact on demand of specified changes in demand drivers, or specified changes in patterns of care. • Makes projections on the basis of specific assumptions about future trends. See, for example, Comas-Herrera et al., 2007

7. Key base case assumptions • Numbers of older people change in line with GAD 2006-based principal population projection. • Age/gender-specific prevalence rates of cognitive impairment and of functional disability remain unchanged. • Marital status rates change in line with GAD 2003-based marital status and cohabitation projections. • Constant ratio of single people living alone to single people living with others. • Proportion of older people receiving informal care, formal community care services and residential and nursing home care remains constant for each sub-group by age, disability, household composition and other needs-related circumstances. • Health and Social care unit costs rise by 2% per year in real terms. Real Gross Domestic Product rises in line with HM Treasury assumptions.

8. Probability of being in an institution for people aged 75 to 84, by gender, household type and dependency group. Source: PSSRU CI LTC model estimates (using MRC CFAS data).

9. Dementia UK Expenditure projections for people with dementia 2002 to 2031 Projected total LTC expenditure, at 2002 prices LTC expenditure as % of Gross Domestic Product Red – older people with cognitive impairment; Blue - not Comas-Herrera et al, IJGP 2007

10. Assumptions about future disability when projecting future LTC expenditure: • Assuming unchanged disability rates • Extrapolating from past trends • Projections based on hypotheses linked to changes in life expectancy (for example Brookings scenario). • Asking the experts for their view about the future. • Projections using epidemiological models of chronic conditions and their mortality and disabling outcomes.

11. 1. Assuming unchanged age-specific disability rates • Seems a reasonable assumption in the context of uncertainty. • Often criticised by policy-makers who argued this was a pessimistic assumption in the context of increasing life expectancy (this criticism involves an implicit belief that there will be compression of disability). • Sensitivity analysis showed that LTC expenditure projections were very sensitive to small changes in disability rates.

12. 2. Extrapolating from past trends • A few studies have projected expenditure assuming that past disability trends would continue into the future. • This approach has been used particularly in countries like the US and Sweden where disability rates had decreased overy time). • BUT: Lack of good consistent time series data to estimate past trends in most countries. • Where consistent data are available, the trends that emerge are often difficult to interpret: • Different trends observed for different severity levels • Changes in direction (reflecting epidemiological transitions?) • And sometimes different surveys covering the same country and the same period give contradictory answers (e.g. Great Britain between 1995 and 2001, see LaFortune et al., 2007) • Is the past necessarily a good predictor of the future?

13. 3. Projections based on hypotheses linked to changes in life expectancy • Modelling hypothetical assumptions that link the expected rise in life expectancy with assumptions about changes in age-specific disability rates. • For example, the “Brookings scenario” shifts the rates of age-specific prevalence of disability to higher ages as life expectancy increases. E.g. if life expectancy at age 65 is projected to rise by 3 years between the year 2007 and the year 2030, then the disability rate of a person aged 65 in the year 2007 would be applied to a person aged 68 in 2030. • More formally: • If D(x) t0 is the disability rate of a person aged x, in the year t0, the disability rate of a person aged x at t1 would become: D(x)t1 = D(x+)t0 (1) Where = LE(x)t1 – LE(x) t0 With: D(x) = Disability rate for a person aged x LE(x) = Life expectancy at age x t0, t1 = Points in time. • This method of modelling effectively decreases disability rates and, to a certain extent, can compensate for increases in the numbers of older people when projecting long-term care expenditure

14. 4. Asking the experts about the future • Normally involves using consensus building methods (s.a. Delphi, focus groups…) to find a set of assumptions about the future that a group of experts agree with. • Challenges: • difficulties establishing how “representative” the experts consulted are. • Translating the experts views into future disability or dementia prevalence rates may not be straightforward

15. Expert (Delphi) panel on dementia futures Expert panel: old age psychiatrists, geriatricians, neurologists, public health doctors, basic scientists, health economists, service professionals … (n=26) Considered various future scenarios. Panel was ‘moderately optimistic’ about impact of scientific advances and changes in risk factors. Overall scenarios chosen by the panel suggested: Small reduction in the prevalence of dementia. A freeze in the numbers of older people in institutions. An increase in the qualifications and pay of care assistants that look after older people with dementia. Comas-Herrera et al, Int Psychogeriatrics 2010

16. Translating the Delphi outcomes into future scenarios • Methodological issues: we were not able to model scenarios about incidence or duration of dementia as we have a prevalence model. • Where it was not possible to estimate the scenarios directly, we approximated them as accurately as possible. • Overall scenarios chosen by the panel suggested: • Small reduction in the prevalence of dementia. • A freeze in the numbers of older people in institutions. • An increase in the qualifications and pay of care. assistants that look after older people with dementia. • We had to make assumptions about the size of some of the panel’s suggestions. To illustrate the range of variation due to our interpretation we produced two different interpretations of the panel’s views: a low and a high expenditure scenario.

17. Impact of experts views on future dementia care and costs projections

18. 5. Projections using the outputs of epidemiological models of chronic conditions and their mortality and disabling outcomes. • As part of the MAP2030 project the PSSRU aggregate LTC model was linked to the SIMPOPGENDER model (Carol Jagger, Newcastle, Ruth Matthews and James Lindesay, Leicester). • SIMPOPGENDER looks at the future pattern of disabling diseases and the implications for the numbers of older people with disability and disability-free life expectancy (DFLE) to 2030. • builds on a previous model developed for Wanless Review of Social Care. • The age-specific prevalence of disability from the SIMPOPGENDER model are incorporated in the PSSRU model for all projection years. See: Jagger et al. Age and Ageing 2009;38:319–25

19. Epidemiological model scenarios (provided by SIMPOPGENDER, based on literature review for specific conditions) Scenario 1: Central Health Scenario Age-specific prevalence of diseases, incidence & recovery rates all remain the same. Mortality rates continue to fall according to levels set by GAD principal projection Scenario 2: Current trends in health continue Prevalence of arthritis, stroke, CHD and cognitive impairment INCREASED by 2% every 2 years from 2012 Onset of disability INCREASED by 10% from 2012 in those with arthritis, stroke and CHD Mortality from Stroke, CHD and mild cognitive impairment REDUCED by 5% from 2012 Scenario 3: Improving population health Prevalence of arthritis, stroke, CHD, and mild CI REDUCED by 2% every 2 years from 2012 Onset of disability REDUCED by 10% in those with arthritis, stroke, CHD and mild CI from 2012 Mortality REDUCED by further 5% in those with stroke, CHD and mild CI from 2015

20. Projections of future use of social care and associated expenditure under different assumptions about disability. England, 2007 - 2032

21. Comparison of Base and MAP2030 scenarios

22. Public expenditure as % of GDP, England 2007-2032, under alternative socio-demographic assumptions

23. Conclusions • Projections of the future affordability of alternative financing regimes are very sensitive to the assumptions made about future disability rates. • The PSSRU model’s former base case scenario of constant age-specific disability prevalence requires (in the context of increased life expectancy) a decline in the prevalence, the disabling consequences and/or duration of chronic illnesses. • Unless there is strong evidence that points in the direction of such declines, constant age-specific prevalence of disability is an optimistic (instead of neutral) assumption. • Improvements in the future health of older people will have a substantial impact on future care needs and associated expenditure. • The underlying causes of disability are changing, and we know the care needs of people with different chronic conditions are very different (even if they have the same number of ADLs). We need to develop more sophisticated models that link better care needs and use of services.

24. References • Comas-Herrera A, Northey S, Wittenberg R, Knapp M, Bhattacharyya S, Burns A. (2010). Future costs of dementia-related long-term care: modelling scenarios about the future. International Psychogeriatrics (first view available online). • Comas-Herrera, A., Wittenberg, R., Pickard, L., Knapp, M. and MRC-CFAS.(2007).Cognitive impairment in older people: its implications for future demand for services and costs. International Journal of Geriatric Psychiatry, 22: 1037-1045. • Jagger C., Matthews R., Comas-Herrera A., Wittenberg R., Pickard L., Malley J., King D., and MRC CFAS. (2009a). Disability in later life: causes, consequences and future prospects. Presentation given at a London School of Economics seminar, 15th September 2009. • http://www.lse.ac.uk/collections/MAP2030/Seminars/Disability_seminar/MAP2030%2015%20Sept%20Handout.pdf • Jagger C., Matthews R., Lindesay J., Robinson T., Croft P., Brayne C. (2009b).The effect of dementia trends and treatments on longevity and disability: a simulation model based on the MRC Cognitive Function and Ageing Study (MRC CFAS). Age and Ageing38 (3): 319-325. • Wittenberg R, Pickard L, Comas-Herrera A, Davies B and Darton R. (2001) Demand for long-term care older people in England to 2031, Health Statistics Quarterly12, 5-17.