Raphael Wittenberg Personal Social Services Research Unit

1. Yorkshire and Humberside Strategic Clinical Networks: Regional Leads Meeting 12 May 2015 The evidence and economic case for post diagnostic support for people with dementia Raphael Wittenberg Personal Social Services Research Unit London School of Economics and Political Science

2. Acknowledgements and Disclaimer The work I am presenting was conducted by colleagues at the Personal Social Services Research Unit (PSSRU) at LSE Some of it was supported by: • the Department of Health (DH) for England • NHS England • the National Institute for Health Research (NIHR) • the Economic and Social Research Council • the Alzheimer’s Society. All views expressed in this presentation are those of the presenter, and are not necessarily those of the DH, NHSE, NIHR, ESRC or Alzheimer’s Society.

3. PSSRU Studies of Dementia • Dementia scenarios study for G7 Dementia Event, June 2014 • Cost of Illness Study for Dementia UK second edition report, funded by the Alzheimer’s Society, September 2014 • Alzheimer’s disease scenarios modelling for the Office for Life Sciences, November 2014 • Economic analyses for a range of trials of different interventions • Economic case for dementia care, funded by NHS England, started this month • Comprehensive approach to modelling outcome and cost impacts of interventions for dementia(Modem), funded by the ESRC and NIHR, 2014 to 2018

4. Annual cost of dementia in the UK Total cost = £26.3 billion Average cost per person (for the 816,000 people with dementia) = £32,250 This is a 24% real terms increase in just 7 years Estimates by PSSRU for Dementia UK: 2nd edition published by the Alzheimer’s Society Sept 2014

5. Average annual cost per person - depends on severity and care setting £55,197 £42,841 £36,738 £25,723 Prince, Knapp et al Dementia UK 2nd Edition, 2014

6. Good and bad costs These are just aggregate costs (not cost-effectiveness findings) – some are good and some bad: • ‘Good costs’ – appropriate (evidence-based) treatment and care responses to assessed needs; and responding to individual preferences. • ‘Bad costs’ – result from late or no diagnosis, unavailability of effective care, crisis admissions to hospital, unnecessarily long inpatient stays etc. We must shift the balance from ‘bad’ to ‘good’ – by making evidence-based treatment & care much more widely available.

7. Risk reduction Screening & diagnosis Carer support Staff skills training Medications Psychosocial treatments Home-based care Case management Awareness and attitudes Responding to the challenge: what works? For each area there is (some) international evidence on effectiveness; not much on cost-effectiveness. +++++++++++ Many trials underway +++++++++++ Review of evidence now underway (MODEM) Knapp et al Int J Geriatric Psychiatry 2013; Lombard et al In prep’n

8. START: a manual-based coping strategy Individual programme (8 sessions over 8-14 weeks, delivered by psychology graduates + manual); carers given techniques to: • understand behaviours of person they care for • manage behaviour • change unhelpful thoughts • promote acceptance • improve communication • plan for the future • relax • engage in meaningful, enjoyable activities. Pragmatic, multicentre RCT – START vs usual support. n=260 family carers of people with dementia, North London area. Analyses 8 & 24 months after end of intervention Livingston et al BMJ 2013; Knapp et al BMJ 2013; Livingston et al submitted

9. START: outcomes at 8 months START improved carer mental health and health-related quality of life over 8 months. Carers with usual support were 4 times more likely to have clinically significant depression than carers with START; HADS-total = 2.10 (95% CI 0.51 to 3.75). Small incremental QALY gain for START group; mean 0.042 (95% CI 0.015 to 0.071). (QALY = quality-adjusted life year) Livingston et al BMJ 2013

10. Cost-effectiveness at 8 months Cost of START was offset by reduced use of other services by carers over 8 months. START is cost-effective. Carers getting START had slightly but not significantly higher costs (£252; 95% CI -28 to +565), adjusting for baseline. Cost-effectiveness: £118 (€201) per 1-point change on HADS-total; and £6000 (€7620) per additional QALY (quality-adjusted life year) … measuring carer service use only. Knapp et al BMJ 2013

11. Outcomes & cost-effectiveness at 24 months Effects on carers: • Better mental health: carers with usual support were 7 times more likely to have clinically significant depression • Significantly better quality of life Effects on people with dementia: • No differences in health status or quality of life • Some delay to care home admission (not (yet?) significant) Service costs go up in both groups over time; but care home costs go up more for people in the usual care group. Cost-effectiveness: START has better outcomes and doesn’t cost any more … It is clearly cost-effective. Livingston et al Lancet Psych 2014

12. Cognitive stimulation therapy (CST) CST is a group intervention in care homes & day centres for people with mild-to-moderate dementia: themed activities to stimulate cognitive function. Effective and cost-effective if delivered bi-weekly over 7 weeks. Maintenance CST (weekly for 24 weeks) improves QOL; in combination with ACHEI meds it improves cognition. Also cost-effective over 24 weeks, especially with ACHEIs. Woods et al Cochrane 2012; Orrell et al BJPsychiatry 2014; D’Amico et al, submitted

13. Home-based care Worringly little evidence on what works in home care. Patterns of home support provided to people with dementia and their carers - study led by David Challis (reporting 2015) Reablement home care – no direct evidence for people with dementia, but Glendinning et al (2010) report some success. What evidence there is suggests quality of care is highly variable, and often very poor (e.g. see recent report from group chaired by Paul Burstow). Glendinning et al SPRU/PSSRU report 2010; Hirani et al Age & Ageing 2014; Henderson et al Age & Ageing 2014

14. Telecare is widely seen as long-term solution. However, today’s evidence is not encouraging: • WSD trial  telecare for (all) older people offers ‘small relative benefits’ over usual care, but is not cost-effective (cost per QALY = £297,000). So, are robots the future? Home-based care Surprisingly little evidence on what works in home care. Patterns of home support provided to people with dementia and their carers - study led by David Challis (reporting 2015) Reablement home care – no direct evidence for people with dementia, but Glendinning et al (2010) report some success. Glendinning et al SPRU/PSSRU report 2010; Hirani et al Age & Ageing 2014; Henderson et al Age & Ageing 2014

15. Dementia treatment and care: making the economic case: new study • Summarise and update the existing evidence base on the cost-effectiveness of treatments and care arrangements; • Identify those interventions that are consistent with both national policy frameworks and practice guidance, and for which an economic case might be developed; • Summarise, update or generate (e.g. through simulation modelling) a corpus of up-to-date economic evidence on those interventions that is relevant to the English context; • Prepare an accessible summary of that evidence that could potentially be useful to commissioners as they make their decisions.

16. MODEM: a projections study (2014-18) • How many people with dementia between now and 2040? • What will be the costs and outcomes of their treatment, care and support under present arrangements? • How do these costs and outcomes vary with individual characteristics and circumstances? • How could costs and cost-effectiveness change if better interventions were more widely available and accessed? Methods – data-heavy modelling: • Micro-simulation, macro-simulation, care pathways Team: Martin Knapp, Mauricio Avendano, Sally-Marie Bamford, Sube Banerjee, Ann Bowling, Adelina Comas, Margaret Dangoor, Josie Dixon, Emily Grundy, Bo Hu, Carol Jagger, Maria Karagiannidou, Derek King, Daniel Lombard, David McDaid, Jitka Pikhartova, Amritpal Rehill, Raphael Wittenberg,

17. Questions Thank you for your attention Questions welcome r.wittenberg@lse.ac.uk