Mixed Economy for Care in Dementia (MECADA) project Dissemination event 14 May 2008

1. Mixed Economy for Care in Dementia (MECADA) project Dissemination event14 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. Carer’s location Norfolk N=155 (76 Intervention) Suffolk N=51 Intervention) (27 Urban/rural: London 2/1 Borough of Havering N=30 (13 intervention)

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

7. Demographic characteristics (n=236)

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/1233 • Short report: Charlesworth et al BMJ 2008 14th 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/viewawardpage.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 60th Annual Scientific meeting, 16th-20th 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 Χ2(4)=13.54 , p=.009

19. Respite care use by Carer Network types Χ2(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

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) 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, 14th July, Queen Mary University, London.

29. Carer Service Use

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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