Quality of life of older adults who use social care support and their unpaid carers Stacey Rand & Juliette Malley

Introduction – Policy Context Carers’ Strategy in England (2010, 2014) “It is of crucial importance that we consistently keep in mind the potential impact of caring on the lives of carers, in particular the impact on their health and well-being; education and employment opportunities; social life and social inclusion; and both individual and family finances”. The Care Act (2014) – Focus on promotion of individual wellbeing – Carers’ entitlement to social care support to meet their own needs Adult Social Care Outcomes Framework (ASCOF) – Social care-related quality of life Adults receiving social care support Unpaid adult carers

Measuring the wider impact of social care Support ‘for’ the cared-for person (e.g. home care) may have an effect on carers’ quality of life. “…if I put him somewhere like [name of care service] it would be a service, but he wouldn’t enjoy it. And I wouldn’t enjoy it because I wouldn’t feel safe – he would just be a nightmare. So, if we’re getting the right services, he’s happy and I’m happy”. Rand et al. (2012) How to capture this wider effect of social care? – Individual QoL of carers and ‘service users’ – Combined QoL (‘dyads’)

Measuring the wider impact of social care How much is already known about measuring the impact of care on combined ‘dyad’ QoL? – A literature review identified studies that explored the various individual and contextual factors associated with quality of life of both carers and people for whom they care, mainly health-related quality of life – Identified one peer-reviewed article of carer/patient outcomes in a multidisciplinary care setting for stroke patients in the Netherlands (Cramm et al. 2012) Aims of study: – Preliminary analysis to explore whether the combined ‘dyad’ outcome approach can be used to explore the relationship between QoL of adults aged 65+ years who use community-based social care services and their unpaid carers – To identify individual, health-related or contextual ‘risk factors’ associated with lower QoL while accounting for the interdependence of QoL of carers and those for whom they care – To identify the relationship between service user and carers’ satisfaction with social care and quality of life

Methods Analysis uses data collected in 2013/14 for the Identifying the Impact of Adult Social Care (IIASC) study Survey of adults who receive community-based social care support and their unpaid carers across 22 local authorities in England Carers were identified via the service user who participated in the survey – 376 unpaid carers (52.3% response rate) – 213 (67.6%) did not receive any carer-specific support (e.g. information and advice, carer support group, training for carers, employment support) Analysis only of service users aged 65+ years and their carers – 184 pairs of service users and unpaid carers

Multi-level Modelling of factors associated with care- related quality of life Dependent variables: – Three domains from the Adult Social Care Outcomes Toolkit rated as (3) ‘ideal state’, (2) ‘no needs’ or (1) ‘some/high-level needs’: Control over daily life Occupation (‘doing things you value and enjoy’) Social participation and involvement – Rating using counter-factual self estimation that social care support has a positive effect on quality of life (1) compared to no (or negative) effect of services (0) on quality of life Independent variables considered: – Individual characteristics, e.g. gender, education, household finances – Health or underlying conditions, e.g. self-rated health, whether respondent has a mental health problem – Satisfaction with social care support – Caregiving situation, e.g. co-residence, duration of caregiving, hours of caregiving provided

The IIASC Sample Cared-for person Mean (SD) or N (%) Carer Mean (SD) or N (%) Age in years78.5 (8.7)66.9 (12.5) Male73 (39.7%)81 (44.0%) Education: A-Level or equivalent, or higher53 (29.1%)71 (36.6%) Household finances: Ok, or some/severe difficulties 98 (53.6%)108 (59.3%) Live with cared-for person / carer137 (74.5%) Good or very good self-rated health53 (28.8%)81 (44.0%) Has a mental health condition59 (32.1%)30 (16.3%) Number of I/ADLs with difficulty (13 items)10.1 (3.0)n/a Duration of care: ≥5 yearsn/a128 (69.6%) Intensity of care: ≥50 hrs/weekn/a84 (45.7%) Extremely or very satisfied with services144 (78.7%)110 (62.2%)

The IIASC Sample: Social Care-related Quality of Life Cared-for person N (%) Carer N (%) Control over daily life High-level or some needs84 (45.6%)63 (34.2%) No needs62 (33.7%)70 (38.0%) Ideal state38 (20.7%)51 (27.8%) Social care support has a positive effect on QoL121 (65.8%)89 (48.4%) Occupation (‘Doing things I value or enjoy’) High-level or some needs88 (47.8%)89 (48.4%) No needs51 (27.7%)53 (28.8%) Ideal state43 (23.4%)42 (22.8%) Social care support has a positive effect on QoL67 (36.4%)94 (51.1%) Social participation High-level or some needs64 (34.8%)55 (29.9%) No needs51 (27.7%)56 (30.4%) Ideal state67 (36.4%)72 (39.1%) Social care support has a positive effect on QoL67 (36.4%)71 (38.6%)

Factors associated with Control over daily life A higher rating of Control over daily life – Carer: Lower education level (GCSE or equivalent, no qualifications); does not lived with cared-for person: good or very good self-rated health. – Cared-for person: Self-rated good household financial situation; does not have a mental health condition Social care support has a positive effect on Control over daily life – Carer: Very or extremely satisfied with services. – Cared-for person: Does not live with carer; does not have a MH condition Whilst controlling for other factors, carers were significantly less likely to report a positive effect of services compared to cared-for people (service users).

Factors associated with Occupation A higher rating of Occupation (‘doing things you value and enjoy’) – Carer: Gender (male); does not lived with cared-for person: good or very good self-rated health – Cared-for person: Good or very good self-rated health; fewer difficulties with activities of daily living; does not have a mental health condition Effect of social care support on Occupation – Carer: Very or extremely satisfied with services Whilst controlling for other factors, no significant difference between the carer and the cared-for person’s rating of Occupation or likelihood of reporting a positive effect of services.

Factors associated with Social participation A higher rating of Social participation – Carer: Does not lived with cared-for person: does not have a mental health condition; very or extremely satisfied with services – Cared-for person (service user): Lower education level (GCSE or equivalent, no qualifications); fewer difficulties with activities of daily living; very or extremely satisfied with services Effect of social care support on Social participation – Carer: Gender (male) – Cared-for person: A good household financial situation; very or extremely satisfied with services. Whilst controlling for other factors, carers reported higher quality of life than cared-for people. No significant difference in the likelihood of carers or cared-for people reporting that social care support has a positive effect on this aspect of quality of life.

Discussion and conclusions Multilevel modelling enables simultaneous investigation of the association between rating of quality of life attributes and predictor variables that capture individual characteristics, underlying health condition, the caregiving situation and satisfaction with social care support. Carers are less likely than cared-for people to report that social care support has a positive impact on their quality of life in terms of Control over daily life; the associations in the other two domains (Occupation and Social participation) did not reach significance. – Does community-based social care support address the needs of carers in terms of Control over daily life?

Discussion and conclusions Some preliminary evidence of possible indicators of ‘at risk’ dyads – Report of mental health conditions by the cared-for person is associated with lower quality of life or impact of social care support on Control over daily life – Less likely to report an positive impact of services on Control over daily life if the carer and cared-for person live together – Less likely to report a positive impact of services on Social participation if the household financial situation is alright or difficult Satisfaction with services is positively associated with the impact of social care support. – Carer rating of satisfaction is associated with a positive impact of services on Control over daily life and Occupation – The cared-for person’s rating of satisfaction is associated with a positive impact of services on Social participation

Next steps The results presented here are a preliminary analysis Further analysis on whole sample – Explore ‘partner effects’ – Consider factors associated with the carer and cared-for person’s relationship (e.g. relationship, motivation for caring) ASCOT preference weights – Development of preferences for ASCOT-Carer – Are some domains valued differently by unpaid carers, services users, and the general population?

Acknowledgements This presentation is based on independent research commissioned and funded by the Policy Research Programme in the Department of Health. The views expressed are not necessarily those of the Department. Contact details