1. Mixed Economy for Care in Dementia (MECADA) project Dissemination event 14 May 2008 Acknowledgements The Befriending and Costs of Caring (BECCA) project (ISRCTN08130075) was funded by the Health Technology Assessment (HTA) Programme (project no 99/34/07) granted to Charlesworth (University College London), Mugford, Poland, Harvey, Price, Reynolds and Shepstone (University of East Anglia). Befriender expenses were funded by Norfolk and Suffolk Social Services, the King’s Lynn and West Norfolk Branch of the Alzheimer’s Society and an AdHoc grant from the Department of Health to North East London Mental Health Trust. XT is currently funded by the ESRC (RES-000-22-2020 grantholders:Charlesworth, Higgs and Poland). The views and opinions expressed in this paper are those of the authors and do not necessarily reflect those of the Department of Health or ESRC. Georgina Charlesworth, Xanthippe Tzimoula, Fiona Poland, Paul Higgs

2. 4 Presentations “Who, what & where?” Georgina Charlesworth (UCL) “To those that have, more is given” Xanthippe Tzimoula “Sustainability and diversification” Fiona Poland (UEA) “Substitution, duplication or localisation?” Paul Higgs (UCL)

3. “Who, what & where?” Georgina Charlesworth (UCL)

4. Befriending and Costs of Caring (BECCA) Design: Multi-site, cost-effectiveness randomised controlled trial Intervention: Access to a voluntary sector based befriender facilitator vs usual care alone Eligibility: providing 20 or more hours per week for a relative with progressive dementia living at home Recruitment: primary care, voluntary sector, secondary care

5. (13 intervention) Carer’slocation Norfolk N=155 (76 Intervention) Suffolk N=51 (27 Intervention) London Borough of Havering N=30 Urban/rural: 2/1

6. BECCA: Norfolk & Suffolk Norwich (from April 02) Gt Yarmouth (from Aug 02) Lowestoft (from Nov 02) Ipswich (from Nov 02) West Suffolk (from April 02) King’s Lynn (Jan 03) North Norfolk (Nov03)

7. Demographic characteristics (n=236) n (%) Gender: female152 (64.4) Kinship to PwD: spouse159 (67.4) adult child54 (22.9) Mean (SD) Carer age68.0 (11.4) PwD age78.2 (8.7) Duration of caring (yrs at baseline) 4.1 (3.8)

8. BECCA Findings No evidence for effectiveness or cost- effectiveness of ‘access to a BF’ Low uptake of befriending service Some benefit for carers engaging with 6+months befriending Full trial report: www.hta.ac.uk/1233www.hta.ac.uk/1233 Short report: Charlesworth et al BMJ 2008 14 th June issue

9. Aims of MECADA Describe pattern of change in the ‘mixed economy’ of care for carers of person with dementia in relation to psychological and social characteristics of carers Study the how different contributions from different welfare providers (statutory, voluntary and family) can affect each other over 2 years (e.g. service replace family carer or facilitate care) www.esrcsocietytoday.ac.uk/esrcinfocentre/viewaward page.aspx?awardnumber=RES-000-22-0202www.esrcsocietytoday.ac.uk/esrcinfocentre/viewaward page.aspx?awardnumber=RES-000-22-0202

10. Definitions ‘Mixed economy’ –Same services being available from a number of different providers e.g. health or social services (statutory sector), private sector, voluntary / charitable organisations or family & friends. ‘Crowding in’ (complementarity) –People who receive a service from one provider are more likely to receive support from other providers ‘Crowding out’ (substitution) –Receiving a service from one provider reduces use of support from elsewhere

11. BECCA data used in MECADA Demographics Burden (CADI-F) Service use –daycare, home care, sitting services, respite –providers: statutory, voluntary, private Support from family, friends &/or neighbours –none, occasional (less than weekly) or regular (daily or weekly) –respite or assistance Social network type

12. Structural Social Support Practitioner Assessment of Network Typology (PANT) (Wenger, 1991) 8 questions assess: Frequency of contact with, and geographical proximity to family Frequency of contact with friends and neighbours Membership of clubs or religious groups

13. Network Types Wenger (1997) highlights likely changes linked to Wider community-focused – low isolation, wider friendship- focussed Locally integrated – local community engagement Local self-contained – local community contact Family dependent – low isolation but less engaged with wider community Private restricted – low community or family contact Inconclusive (in transition)

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15. “To those that have, more is given” Xanthippe Tzimoula Higgs, P., Tzimoula, X., Poland, F., Charlesworth, G. (2007) ‘To those who have more is given’; Network type and service use in England. Poster Presentation at the Gerontological Society of America 60 th Annual Scientific meeting, 16 th -20 th November, San Francisco.

16. Services & providers

17. Baseline service use & carer characteristics 2 in 3 carers were using 1 or more service 4 in 5 non-spouses used services compared to only 3 in 5 spouses Carers expressing higher burden were more likely to be using services Carers using 1 or more service were no more or less likely to be female, urban, isolated or in receipt of family support compared to those using no services

18. Day care use by Carer Network types UseNon use Family dependent22 (20.4%)19 (17.6%) Locally integrated31 (28.7%)16 (14.8%) Local self-contained25 (23.1%)21 (19.4%) Wider community-focused7 (6.5%)21 (19.4%) Private restricted23 (21.3%)31 (28.7%) Χ 2 (4)=13.54, p=.009

19. Respite care use by Carer Network types UseNon use Family dependent14 (26.9%)26 (16.0%) Locally integrated15 (28.8%)33 (20.4%) Local self-contained12 (23.1%)34 (21.0%) Wider community- focused 1 (1.9%)26 (16.0%) Private restricted10 (19.2%)43 (26.5%) Χ 2 (4)= 10.90, p=.028

20. Summary & conclusions There was a mixed economy of care provision Sig relationship between network type and use of day care and respite –Carers in family dependent & locally integrated network more likely to make use of respite and daycare –Carers in wide community focussed & private restricted networks less likely to make use of day care or respite care Those with local & family networks more likely to be using services than those without family / family contact I.e. ‘crowding in’

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22. “Sustainability and diversification” Fiona Poland (UEA)

23. Carer transitions over 2 years At home (n=96) Transition (n=94) T-test Mean (sd) (p value) Carer age67 (10.6)67 (11.5).141 (.88) Duration of caring (yrs) 4.1 (2.9)3.9 (2.7).55 (.57) Burden53.6 (11.4)55.0 (9.5)-.96 (.33) Perceived support (MSPSS) 44.0 (9.9)43.8 (9.1).10 (.92) Depression (HADS) 6.13(4.0)7.2 (3.5)-1.87 (.06) N (%) Chi 2 (p value) Spouse73 (76)54 (57)12.0 (.007)

24. Were carers who had a ‘transition’ during follow-up different at baseline? Transition to residential / nursing / continuing care more likely if the carer was: –a non-spouse –Depressed –in locally integrated and locally self-contained network type* *Charlesworth, G., Tzimoula, X., Higgs, P., Poland, F. (2007) Social networks, befriending and support for family carers of people with dementia. Quality in Aging -Policy, practice and research, Vol. 8(2), pp. 37-44.

25. Service providers- changes over 2 years

26. Patterns of quantity of services used and of support received from family, friends or neighbours at baseline and follow-up No. service types used Level of support received from family, friends or neighbours

27. Service use & carer support over time Both family support and service use increase over time 3 in 20 carers still do not use services. This is NOT due to family support. Carers using most services are also whose with most contact with family, friends and neighbours.

28. Carer network stability over 2 years (n=94) BaselineSame network (59% overall) % Family dependent151387 Locally integrated221150 Local self-contained12758 Wider community -focused161169 Private restricted221255 Inconclusive7114 Poland, F., Tzimoula, X., Higgs, P., Charlesworth, G. (2007) Longitudinal changes in social networks and carer support for family carers of people with dementia. Paper presentation at Social Network Conference, 14 th July, Queen Mary University, London.

29. Carer Service Use Carers same remained in Nettype n=55 Carers Nettype changed n=39 Baseline24 monthBaseline24 month n (%) Homecare12 (22)26 (47)10 (26)17 (44) Day care23 (42)34 (62)13 (33)24 (62) Sitting service13 (24)25 (46)7 (18)17 (44) Respite care8 (15)13 (24)7 (18)13 (33) Carer Service35 (65)37 (67)24 (63)23 (59)

30. Summary Types of support fairly stable over the project However, levels of support changed, sometimes in less expected ways Diversification? Expanding voluntary and private sectors – not more individualised/flexible – more strings attached to £ More sustainable? Fewer stable local commissioning links with knowledge of local carers’ needs and resources

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32. “Substitution, duplication or localisation?” Paul Higgs (UCL)

33. Theoretical background Social Policy considerations Government policy has required a ’mixed economy of care’ Crowding in as a concern Crowding out as a concern Complementarity or substitution?

34. Definitions ‘Mixed economy’ –Same services being available from a number of different providers e.g. health or social services (statutory sector), private sector, voluntary / charitable organisations or family & friends. ‘Crowding in’ (complementarity) –People who receive a service from one provider are more likely to receive support from other providers ‘Crowding out’ (substitution) –Receiving a service from one provider reduces use of support from elsewhere

35. Locality differences Local commissioning of voluntary and private sector services NHS respite provision & continuing care Services available to rural populations

36. Preliminary conclusions Evidence for a ‘mixed economy of care’ No clear evidence for ‘crowding out’ No clear evidence for ‘crowding in’ Resources going to those already benefiting Some influence of network type Importance of local differences

37. Final conclusions Mixed economy working? Challenges of PwD as a client group Localisation as a solution to complex problems in different locations

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