1. Social networks as a predictor of service use in the mixed economy of care for carers 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. Fiona Poland

2. Presentation overview The mixed economy of carer support MECADA aims: to examine relationships between network type and service use ‘Crowding in’ and ‘crowding out’ Findings from MECADA Carers’ perceptions of and uses of formal and informal support Network implications - planning network-sensitive support

3. 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

4. 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

5. 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

6. 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

7. 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)

8. Services & providers

9. 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

10. 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

11. 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

12. Cross sectional findings 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’

13. 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)

14. 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.

15. Service providers- changes over 2 years

16. 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

17. 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.

18. 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.

19. 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)

20. 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

21. Discussion Govt carer support focus on funding respite and short breaks – only taken up via some networks? Potential for developing carers’ own networks to provide respite (especially Private Restricted)? Predictive power of networks in understanding different patterns of support uptake? Optional nature of friendship networks help affirm self-worth? Uses of befriending in diversifying valued networks? Need to research if relationship quality rather than structure of networks impact carer wellbeing?

22. 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 Consider assessing carers’ networks and also develop carers’ own networks to provide respite

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