Mixed Economy for Care in Dementia (MECADA) project Academic Advisory group meeting Acknowledgements The Befriending and Costs of Caring (BECCA) project (ISRCTN ) 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 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, Paul Higgs and Fiona Poland

Overview MECADA aims, sample characteristics, measures Findings on changing support networks and service use Study outputs – to date and planned

Aims of MECADA Describe pattern of change in the ‘mixed economy’ of care for carers of PwD in relation to psychological & social characteristics of carers Study the interplay of contributions from welfare providers (statutory, voluntary and family) over 2 years (e.g. service replace family carer or facilitate care)

Demographic characteristics Baseline sample N=236 Longitudinal sample N=96 n (%) Gender: female152 (64.4)61 (63.5) Kinship to PwD: spouse159 (67.4)73 (76.0) adult child54 (22.9)18 (18.8) Mean (SD) Carer age68.0 (11.4)67.2 (10.6) PwD age78.2 (8.7)75.3 (9.2) Duration of caring (yrs at baseline) 4.1 (3.8)4.4 (4.1) All carers of PwD at home

Measures (1) Network typology (PANT; Practitioner Assessment of Network Typology; Wenger, 1991) – 8 questions assess: Frequency of contact & geographical proximity to family (e.g. ‘frequency speaking to family’, ‘nearest relative’) Frequency of contact with friends & 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

Measures (2) Received Support – 2 dichotomous (yes/no) questions: ‘do any relatives provide daily/weekly help or support?’ & ‘have you had any help/support on an occasional basis?) Service use Service – 5 dichotomous (yes/no) questions: ‘Has PwD stayed in residential or nursing home facilities?’ (Respite care) ‘Does PwD use day care/ day hospital services?’ (Day care) ‘Is there anyone who comes to help PwD with personal care?’ (Personal care) ‘During the last 6 months of caring, have you used any services for carers?’ (Carer services) ‘Use of any social clubs/ day centres yourself / jointly with PwD?’ (Joint social events).

Measures (3) Psychological measures not included in this presentation –Burden (CADI; Carers’ Assessment of Difficulties Index; Charlesworth et al., 2007; Nolan & Grant, 1992) – 30-item multi-dimensional measure of objective burden (e.g. ‘I don’t have any time for myself’, ‘It is physically tiring’) – range from 1-never applies to 3 -always applies –Perceived social support (MSPSS; Multidimensional Scale of Perceived Social Support; Zimet, Dahlem, Farley, 1988 ) 12 items ranging from 1-strongly disagree to 5-strongly agree ─‘Family’ (e.g. I can talk about my problems with my family), ─‘Friends’ (e.g. I can count on my friends when things go wrong) ─‘Significant Other’ (e.g.. I have a special person who is a real source of comfort to me)

Network type for each level of received support at baseline Regular Support (n=98) Occasional Support (n=59) No Support (n=69) n(%) Family dependent24 (24.7)8 (13.6)8 (12.1) Locally integrated28 (28.9)11 (18.6)6 (9.1) Local self-contained16 (16.5)18 (30.5)12 (18.2) Wider community focused7 (7.2)10 (16.9)9 (13.6) Private restricted18 (18.6)9 (15.3)25 (37.9)

Network type as predictor of service use Baseline –Sig relationship between network type and use of day care and respite –Carers in locally integrated network more likely to make use of respite and daycare –Carers in private restricted network less likely to make use of day care or respite care Service use at 2 year follow-up (baseline network) –Carers in locally integrated and locally self-contained most likely to see care-recipient move into residential / nursing / continuing care.

Mixed economy of service provision at baseline and follow-up Baseline Follow-up

Use of Daycare, Personal care and Respite at Baseline (N=96) N (%) No service use Daycare only Personal care only Respite only Daycare + Personal care Personal + Respite Daycare + Respite All 3 services used Regular Family Support Occas Family Support No Family Support 43 (45.7) 14 (33.3) 7 (16.7) 21 (50.0) 10 (10.6) 4 (44.4) -5 (55.6) 12 (12.7) 4 (36.4) 3 (27.3) - 14 (14.8) 5 (35.7) 4 (28.6) 2 (2.1) 1 (50.0) - 4 (4.2) 2 (50.0) - 9 (9.5) 7 (77.8) 2 (22.2) -

Use of Daycare, Personal care and Respite at Follow-up (N=96) N (%) No service use Daycare only Personal care only Respite only Daycare + Personal care Personal + Respite Daycare + Respite All 3 services used Regular Family Support Occas Family Support No Family Support 13 (13.5) 5 (41.7) 6 (50.0) 1 (8.3) 14 (14.5) 8 (57.1) 3 (21.4) 3 (21.4) 18 (18.7) 12 (66.7) 3 (16.7) 3 (16.7) 2 (2.0) -2 (100) - 24 (25.0) 6 (27.3) 8 (36.4) 8 (36.4) 4 (4.1) 2 (50.0) - 6 (6.2) 4 (66.7) 2 (33.3) - 15 (15.6) 8 (53.3) 6 (40.0) 1 (6.7)

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

MECADA Outputs (1) 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 Tzimoula, X., Bartlett, A., Charlesworth, G. (2007) Befriending and Cost of Caring (BECCA): Does service use by carers differ across two areas of England? PSIGE Newsletter, July No.100, pp 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.

MECADA Outputs (2) Forthcoming conference presentations: 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. Tzimoula, X., Charlesworth, G., Newman, S. (2007) The impact of caring for people with dementia and the role of social support. Paper presentation at the Hellenic Division of Clinical and Health Psychology Conference, 9 th -11 th November, Aristoteleio University, Thessaloniki.