Mixed Economy for Care in Dementia (MECADA) project Consultation group meeting 19th March 2008: More findings and ideas for dissemination Georgina Charlesworth, Fiona Poland, Xanthippe Tzimoula, Paul Higgs Welcome to those who have now joined us and thanks to those who are continuing to contribute 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 What we discussed last time (Nov 07) Further findings Requests from the academic advisory group Discussion

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

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

From last meeting (November 07)

Issues raised Using services and benefits may open the door to other services People can be encouraged by those who support them to try new options Peoples’ personal experiences and personality are also important influences on choices Being involved with other people can allow carers to tap alternative viewpoints and expertise to address problems

Key issues for dissemination Use of findings to demonstrate: the importance of gaining different types of support the need for more targeted forms of support, especially befriending for the most isolated

Methods of dissemination Feeding into different types of carers’ network activities e.g. Alzheimer’s Society and Age Concern and their websites Booklets Magazines Meetings, radio and word of mouth Presentations in trainings for workers e.g. Social Work; Crossroads

Findings

Findings at baseline 2 in 3 carers were using 1 or more service Carers expressing higher burden were more likely to be using services 4 in 5 non-spouses used services compared to only 3 in 5 spouses Carers using 1 or more service were no more or less likely to be female, urban, isolated or in receipt of family support

Findings for ‘at home’ carers over 2 years The person with dementia is more likely to move into residential / nursing / continuing carer if their main carer is: a non-spouse depressed For ‘at home’ carers 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.

Requests from Academic Advisory group

West Suffolk (from April 02) BECCA areas 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)

Locality differences Between April 2002 and March 2006, what were the characteristics of each locality in terms of: Local commissioning of voluntary and private sector services NHS respite provision & continuing care Services available to rural populations

Discussion