Dementia: policy and practice challenges, economic responses

Transcription

1 OECD, Paris, 26 June 2014 Dementia: plicy and practice challenges, ecnmic respnses Martin Knapp Persnal Scial Services Research Unit Lndn Schl f Ecnmics and Plitical Science

2 Structure f my talk A. The individual with dementia B. New realities? C. New respnses? D. New scenaris? E. New directins?

3 An individual with dementia

4 An lder persn with dementia Older persn

5 supprted by family and friends Family Older persn

6 with supprt frm paid care staff Care staff Family Older persn

7 in their care setting / facility Care staff Family Older persn Care setting (eg care hme)

8 managed by a lcal prvider Lcal prvider (eg lcal charity) Care staff Family Older persn Care setting (eg care hme)

9 and lcated within a natinal bdy, Natinal prvider bdy Lcal prvider (eg lcal charity) Care staff Family Older persn Care setting (eg care hme)

10 whse services are cmmissined Natinal prvider bdy Lcal prvider (eg lcal charity) Care staff Family Older persn Care setting (eg care hme) Cmmissining bdies; funders; purchasers

11 within varius regulatry, advcacy and plicy cntexts Advcacy bdies Natinal prvider bdy Lcal prvider (eg lcal charity) Care staff Family Older persn Care setting (eg care hme) Plicy-making bdies (natinal, reginal, lcal) Regulatry bdies Cmmissining bdies; funders; purchasers

12 But tw enrmus, exgenus pressures influence what happens Advcacy bdies Natinal prvider bdy Lcal prvider (eg lcal charity) Care staff Family Older persn Ecnmics Care setting (eg care hme) Plicy-making bdies (natinal, reginal, lcal) Regulatry bdies Cmmissining bdies; funders; purchasers Demgraphy

13 New realities

14 Frm Alzheimer s Disease Internatinal website Grwing prevalence A glbal epidemic. An emergency in slw mtin. A demgraphic time-bmb Big impacts n verall disability / ill-health: Grwth in disability-adjusted life years (DALYs) due t dementia, between 1990 and 2010, in the UK = 76%; higher than almst every ther cause. And big cnsequences fr expenditure: - fr healthcare and lng-term care systems; - fr individuals with dementia and their families.

15 Public spending n lng-term care as % f GDP: 2010 and prjected t 2060 Spending n dementia care will be prprtinately much higher by 2060 Eurpean Unin, Ageing Reprt 2012

16 Trends in health spending % f GDP OECD

17 Glbal ecnmic recessin

18 Recessin hurts Unemplyment Pverty Lwer salaries Reduced incme Mre persnal debt Mrtgage failures

19 Recessin hurts Lwer wellbeing Unemplyment Pverty Lwer salaries Reduced incme Mre persnal debt Mrtgage failures Mre mental health needs Lwer resilience Slwer recvery Higher suicide rate Alchl misuse (?) Wrse physical health Mre scial islatin Hardened attitudes Greater inequalities 19

20 Percent unemplyed Recessin, unemplyment and stigma N mental health prblems Mental health prblems Recessin widened the gap in unemplyment rates between individuals with and withut MH prblems...especially fr males and peple with lw educatin levels. Evans-Lack et al. PLOS ONE 2013

21 Stigmatising attitudes Public attitudes played a part in this increase: Eurbarmeter 2006 asked the general public questins abut peple with psychlgical r emtinal health prblems. D yu agree that: 1. they cnstitute a danger t thers 2. they are unpredictable 3. they have themselves t blame 4. they never recver. We cnverted these t a single verall measure f stigmatizing beliefs cncerning mental illness.

22 Percent unemplyed Recessin, unemplyment and stigma Evans-Lack et al. PLOS ONE 2013 The N disadvantage mental health facing prblems peple with mental Mental health prblems prblems is greater in cuntries with higher levels f stigmatizing attitudes twards mental illness. Thse stigmatizing attitudes prbably carry ver t peple with dementia and their family carers.

23 Unemplyment Pverty Reduced incme Debt (persnal) Husing prblems Family disruptin Scial deprivatin Prer physical health Recessin hurts Mre scial islatin & lneliness Lwer wellbeing But des austerity kill? Mre mental illness Lwer resilience Many natinal gvernments have respnded t recessin with austerity plicies Slwer recvery big cuts in gvernment spending; big increases in Mre suicides taxes. Mre alchl abuse David Stuckler and Sanjay Basu, in The Bdy Ecnmic (2013), argue that Hardened austerity attitudes measures make matters much wrse having devastating effects n public health. Greater inequalities - rich and pr - ill and well

24 New respnses

25 What wrks in ways that key decisinmakers cnsider affrdable? Preventin Screening Carer supprt Cmmunity capacity Staff skills training Treatments Telehealth / telecare Self-directed supprt Re-ablement hme care This ught t be a winner but nt enugh ecnmics evidence yet. Early detectin ught t be anther winner but again n strng ecnmics evidence. Bth areas urgently need research attentin Knapp et al. IJGP 2012 reviews sme f the abve

26 What wrks in ways that key decisinmakers cnsider affrdable? Preventin Screening Carer supprt Cmmunity capacity Staff skills training Treatments Telehealth / telecare Self-directed supprt Re-ablement hme care Family & ther unpaid carers are the frntline prviders Cper et al. Int Psychger 2007; Mahney et al. AJGP 2005

27 The cst f dementia in England 2015 per persn per year (, at 2012 prices) High csts; majr impacts n quality f life Knapp et al. Scenaris f Dementia Care 2014

28 What wrks in ways that key decisinmakers cnsider affrdable? Preventin Screening Carer supprt Cmmunity capacity Staff skills training Treatments Telehealth / telecare Self-directed supprt Re-ablement hme care Family & ther unpaid carers are the frntline prviders Caring rewarding and fulfilling, but emtinally & physically draining. Depressin & anxiety highly prevalent. Pr carer wellbeing linked t: care breakdwn; care hme admissin; elder abuse Cper et al. Int Psychger 2007; Mahney et al. AJGP 2005

29 START: encuraging new evidence f a carer supprt interventin Individual therapy prgramme (8 sessins with psychlgy graduate + manual) Techniques t understand/manage behaviurs f persn they supprt, change unhelpful thughts, prmte acceptance, imprve cmmunicatin, plan fr future, relax, engagement. Csts and utcmes (8-mnth & 24-mnth fllw-up) Mre effective than standard care and n mre cstly (frm NHS and scietal perspectives) at 8m and 24m Cst-effective by reference t carer and patient utcmes Reduces care hme admissin rate fr patients Livingstn et al. BMJ 2013; Knapp et al. BMJ 2013; Livingstn et al 2014 submitted

30 SADD: intriguing evidence n carer cllateral benefits? SADD a randmised trial f tw different antidepressants fr treating peple with dementia wh have c-mrbid depressin. Antidepressants (mirtazapine and sertaline) nt different frm each ther r placeb in symptm alleviatin But mirtazapine was mre cst-effective because f carer effects lwer carer csts Ethics f treatment?

31 What wrks in ways that key decisinmakers cnsider affrdable? Preventin Screening Carer supprt Cmmunity capacity Staff skills training Treatments Telehealth / telecare Self-directed supprt Re-ablement hme care Can cmmunities shulder mre f the respnsibility? Maybe. Befriending, timebanks etc. can be cst-effective t engage cmmunity invlvement Knapp et al. Cmm Develpment J 2013

32 What wrks in ways that key decisinmakers cnsider affrdable? Preventin Screening Carer supprt Cmmunity capacity Staff skills training Treatments Telehealth / telecare Self-directed supprt Re-ablement hme care Wds et al. Cchrane Review; Knapp et al. Brit J Psychiatry 2006; Orrell et al Brit J Psychiatry 2014 Dementia care nt a high-status ccupatin. Lw wages; high turnver. Cgnitive stimulatin therapy wrks and it is cst-effective but nt widely cmmissined r prvided (in UK).

33 What wrks in ways that key decisinmakers cnsider affrdable? Lts f evidence nw Preventin Screening Carer supprt Cmmunity capacity Staff skills training Treatments Telehealth / telecare Self-directed supprt Re-ablement hme care NICE Technlgy Appraisals n medicatins and when they are likely t be cst-effective. Sme evidence n CBT effectiveness fr c-mrbid depressin and anxiety, but n ecnmics evidence. But little evidence n treatment when there are c-mrbid physical health prblems.

34 What wrks in ways that key decisinmakers cnsider affrdable? ICT-based mnitring Preventin Screening Carer supprt Cmmunity capacity Staff skills training Treatments Telehealth / telecare Self-directed supprt Re-ablement hme care Steventn et al. BMJ 2012; Hendersn et al. BMJ 2013; Hirani et al Age & Ageing 2014; Hendersn et al Age & Ageing 2014 r treatment really ught t be ne way frward especially t supprt family carers. But the evidence frm rbust trials is equivcal. Needs technlgical develpment and better targeting.

35 What wrks in ways that key decisinmakers cnsider affrdable? Preventin Screening Carer supprt Cmmunity capacity Staff skills training Treatments Telehealth / telecare Self-directed supprt Re-ablement hme care Greater chice and cntrl fr peple with dementia and their carers. Persnal budgets wrk! Carer-held budgets especially successful. BUT is there risk f financial abuse? Glendenning et al IBSEN reprt 2007; Manthrpe & Samsi BJSW 2013

36 New scenaris

37 Questin: What is the ecnmic case fr new dementia care scenaris? Current care scenari: Care and supprt as currently prvided in England (Scenari A). N-diagnsis scenari: Dementia is nt diagnsed r treated (B). Diagnsis-nly scenari: Dementia is diagnsed but nt treated (C). Imprved care scenari: Dementia is diagnsed, fllwed by evidence-based, imprved care and supprt (D). Disease-mdifying scenari: Disease-mdifying treatments are available t slw prgressin r delay (E).

38 Methds fr ur mdels 1. Prevalent dementia ppulatin by age & gender 2. Severity f cgnitive impairment 3. Place f residence: cmmunity r care hme 4. Type f care (frmal, unpaid, bth, neither) 5. Cst & quality f life data frm trials (n = 1400) 6. Estimate & cmpare scenari csts and QALYs

39 The cst f dementia in England tday per persn per year ( ) (Scenari A) High csts; majr impacts n quality f life Knapp et al. Scenaris f Dementia Care 2014

40 Is there an ecnmic case fr alternative dementia care scenaris? Current care scenari: Care and supprt as currently prvided in England (Scenari A). N-diagnsis scenari: Dementia is nt diagnsed r treated (B). The tw wrse scenaris n diagnsis (B), n pst-diagnstic supprt (C) bth Diagnsis-nly scenari: Dementia is diagnsed but nt treated increase (C). csts and wrsen quality f life Imprved care scenari: Dementia is diagnsed, fllwed by evidence-based, imprved care and supprt (D). S what abut the better scenaris? Disease-mdifying scenari: Disease-mdifying treatments are available t slw prgressin r delay (E). Knapp et al. Scenaris f Dementia Care 2014

41 Imprving dementia care: mdest effects n csts ( millins, 2012 prices, UK) Quality f life imprvements imprtant but nt huge Unpaid care Scial care Health care But we have nt examined: - distributinal impacts better targeting Current care (A) Dnepezil (D1) Cgnitive stimulatin (D2) Knapp et al. Scenaris f Dementia Care 2014 Case management (D3) Carer supprt (D4)

42 Disease-mdificatin: effects n csts ( millins, 2012 prices, UK) What abut the treatment csts? Knapp et al. Scenaris f Dementia Care 2014

43 Disease-mdificatin: factring in the csts f the new treatments Treatment csts will have a huge influence, depending n price and number treated These treatment csts are purely hypthetical Knapp et al. Scenaris f Dementia Care 2014

44 MODEM: a prjectins study ( ) Research questins Hw many peple with dementia between nw and 2040? What will be the csts and utcmes f their treatment, care and supprt under present arrangements? Hw d these csts and utcmes vary with individual characteristics and circumstances? Hw culd csts and cst-effectiveness change if better interventins were mre widely available and accessed? Methds data-heavy mdelling: Micr-simulatin, macr-simulatin, care pathways

45 New directins

46 Are we facing the perfect strm? Demgraphy is rapidly pushing up prevalence and creating smaller families which are gegraphically mre dispersed. Cmmunities may be less supprtive(?) Hence huge (and lng-term?) ecnmic pressures n individuals and gvernments Hardening attitudes twards mental illness While decisin-makers retreat int their sils, in pursuit f immediate cashable savings.

47 An ecnmic case fr better respnses? Dementia is already cstly... and much f that impact falls t family and ther unpaid carers. Dementia will get much mre cstly everywhere, sn. Knwn evidence-based imprvements will help t achieve quality f life gains, but csts wn t fall much. Sme f thse ecnmic gains rely heavily n carers can they cpe with greater respnsibilities? Disease-mdifying treatments are needed t delay nset / slw prgressin t cut csts and imprve lives. We need a tw-prnged apprach imprve tday s care and find tmrrw s cure (treatment breakthrughs).

48 Further details Thank yu.