Community care for adults with learning disability and their carers: needs and outcomes from the Leicestershire register

A cross-sectional study, based on an epidemiological register, was carried out to describe the prevalence of disabilities, felt needs and use of services for adults with learning disability and to compare outcomes of reported morbidity, stress and satisfaction among their informal carers. Subjects included 2117 adults and 982 carers known to specialist services in Leicestershire. Behavioural and psychological problems and epilepsy were the main disabilities in adults. The leading unmet needs reported by residential carers were for daycare and other forms of residence, and those reported by informal carers were for financial help, long-term social support, respite care and housing adaptations. Informal carers reported 40% more limiting health disorders compared to the general population, with depression almost four times more common among female carers. Divisions between health and social care are causing inequality and hardship. Lifelong informal carers need options for independence. The increase over time in the prevalence of adults with severe learning disabilities adds to the evidence that more resources for care are needed. Epidemiological registers and methods should be developed to aid purchasing and provision for this client group.