Mixed Economy for Care in Dementia (MECADA) project Consultation group meeting: Findings and their dissemination Georgina Charlesworth, Fiona Poland, Xanthippe Tzimoula, Paul Higgs Apologies from Georgina who had hoped to be here today…… 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.

Overview MECADA aims, sample characteristics, measures Findings on support networks, family support and service use Discussion – involvement in dissemination

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) See www.tiny.cc/mecada

Definitions ‘Mixed economy’ ‘Crowding in’ (complementarity) 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 N.B the ‘service provider’ could be family or friends in this context

Demographic characteristics Baseline sample N=236 n (%) Gender: female 152 (64) Kinship to care recipient: spouse 159 (67) adult child 54 (23) Average Carer age 68 Care recipient age 78 Duration of caring (yrs at baseline) 4 Demographics typical of research intervention studies for carers of people with dementia I.e. mainly female, & mainly spouses;carer age just below 70 & person with dementia on average around 10 years older All people with dementia at home at study start

Measures (1) – Support Networks Network typology (Practitioner Assessment of Network Typology (PANT); Wenger, 1991) – 8 questions assess: Frequency of contact and geographical proximity to family (e.g. ‘frequency speaking to family’, ‘nearest relative’) Frequency of contact with friends and neighbours (e.g. ‘activity with friends/ neighbours’) Membership of clubs or religious groups (e.g. ‘religious meetings’) – 5 network types: Family Dependent Locally integrated Local self-contained Wider community-focused Private restricted

Assessing Support Networks Seen as integral to assessing needs of carers and older people in e.g.: Comprehensive assessment of social care needs (Hughes, 1994) NSF for Older People Standard 2 (Person-Centred Care) to maintain social networks Single Assessment (SA) Process in Primary Care (DH Guidance on SA, 2004) social network measures to gauge relationships Recognising importance placed by individuals on their social relationships (Powell, Robison et al. 2007)

Measures (2) – Support and Service Use Received Support 2 questions: ‘Do any relatives provide daily/weekly help or support?’ ‘Have you had any help/support on an occasional basis? Service use 3 questions: ‘Has care recipient stayed in residential or nursing home facilities?’ (Respite care) ‘Does care recipient use day care/ day hospital services?’ (Daycare) ‘Is there anyone who comes to help care recipient at home?’ (Home care & Sitting Services)

Network type and support from family / friends Regular Support (n=98) Occasional Support (n=59) No Support (n=69) n(%) Family dependent 24 (24.7) 8 (13.6) 8 (12.1) Locally integrated 28 (28.9) 11 (18.6) 6 (9.1) Local self-contained 16 (16.5) 18 (30.5) 12 (18.2) Wider community focused 7 (7.2) 10 (16.9) 9 (13.6) Private restricted 18 (18.6) 9 (15.3) 25 (37.9) Carers in family-dependent and locally integrated networks received regular support. Carers in wider community focussed and local self contained received support on an occasional basis. Majority of carers in private restricted network, characterised by having no or little local family or friends, received little or no support. We have published this finding earlier in the year. See Charlesworth et al., 2007 Quality in Ageing, 8(2), 37-44

Network type was linked to types of services carers used At baseline some network types were seen to be associated with use of day care or respite: Carers in locally integrated network more likely to use these services Carers in private restricted network less likely to use these services Carers in locally integrated networks more likely to use services. As seen from previous slide carers in locally integrated networks received regular support from family and friends. Possible example of crowding in. Carers in private restricted network less likely to use day care or respite, and also largest proportion of carers receiving no support from family and friends.

Network type also predicted carers’ use of types of service At 2 year follow-up Carers in locally integrated and locally self-contained networks (at baseline) were most likely to see the care-recipient move into residential / nursing / continuing care Carers in private restricted network were least likely to see care-recipient move into care and most likely to use befriending service Longitudinal data based on N=96 carers who were still providing care at home after 2 years. Demographic characteristics did not differ from the full N=236 sample Use of respite care and day care has been observed as a predictor of use of residential / nursing care. Could this be related to network type? Use of services predicts institutionalisation. Does integration encourage opening up ‘route to institutionalisation’? That is a question we can raise but can’t answer from our data. Carers in private restricted network were least likely to use daycare and respite (previous slide), least likely to see care-recipient move into residental/nursing or continuing care, but most likely to use the befriending service. Different services suit carers in differing network types NB. Carers who used 6+ months of the befriending intervention showed evidence of benefits from the intervention as compared with controls who didn’t – recent findings from BECCA after the dissemination.

Mixed economy of service provision at baseline and follow-up 4 types of service represented Daycare – includes both day hospital and day centres Home care – predominantly personal care for person with dementia Brief ‘at home’ respite e.g. sitting services Residential respite stays Provision of daycare and respite predominantly through statutory sector (health or social services) Private providers making significant contribution to homecare – often commissioned by statutory sector Voluntary sector major provider or sitting services There is a mixed economy of care with statutory, voluntary and private sector all providing services. There is both complementarity (vol sector providing sitting services) and substitution (private sector commissioned to substitute for statutory sector) Over time use of all services increase. Pattern of service provision remains same. Follow-up Baseline Statutory Voluntary Private

Level of support received from family, friends or neighbours Patterns of quantity of services used and of support received from family, friends or neighbours at baseline and follow-up At baseline, large proportion of carers not using any services. At follow-up most carers using 1 or 2 services. For family support, level of support increases over time. Had not know whether or not this would be the case as a large study in America had indicated that family support reduces over time. Note to Fiona – here the 1, 2 and 3 services refers to Xanthippe’s tables used in the academic reference group I.e. daycare, ‘personal care’ and residential / nursing respite. Remember that since then we’ve realised that ‘personal care’ was mislabelled as it included both homecare and sitting services. So, don’t dwell overly on the number of service types used – stick with the general pattern of service use increasing. No. service types used Level of support received from family, friends or neighbours

e.g. agreeing to be interviewed Consultation Three types of involvement (Involve www.invo.org.uk - formerly “Consumers in NHS Research”) Participation e.g. agreeing to be interviewed Consultation e.g. commenting on researchers plans before and during the project to make sure that relevant issues have been considered Collaboration e.g. working with researcher to design and carry out a project “Involve” - the organisation championing the involvement of consumers in NHS research – has described 3 ways in which consumers can be involved: Participation Consultation Collaboration In the BECCA research project, carers were involved in all three ways: Carers currently supporting a person with dementia at home were the research participants “Carer representatives” many of whom had caring experience were involved in planning and consultation before and during the project Lay volunteers, many of whom were ex-carers, provided the befriending intervention and were therefore collaborators in carrying out the research project. The intensity of involvement varied over the course of the trial. Although we ran a lay dissemination event for BECCA, we did not involve the user consultation group members in disseminating finding – even though dissemination is arguably the most important phase of any research. We noted this as an area for development in future projects.

Discussion What points here do you see as especially important for carers? What groups and organisations should these findings reach? How and how far should we involve them? In what ways could you/ other people linked to caring be involved in dissemination? How can we can support you / others in disseminating? Anything else? What groupings are people involved in? Dissemination to grassroots? Dissemination to relevant local/national policymakers? Who do they talk to about caring and about support for caring? Mainly co-habiting carers/PwD – we would expect non-cohabiting carers’ needs to be very different. Small disseminations can be the most valuable. Doesn’t have to involve long articles, presentations, press releases. May mean mentioning a point at a meeting – how to help this process. Policy briefing? Briefings for NSF champions? Rhetoric of user/carer involvement. What Media? Activities?