Title: The START (STrAtegies for RelaTives) study: a pragmatic randomised controlled trial to determine the effectiveness of a manual based coping strategy programme in promoting the mental health of carers of people with dementia - cohort follow-up
Funder: Department of Health and Social Care

Abstract: There is evidence from the USA but not from the UK that providing specialist, individually tailored psychological support to people with dementia and their family carers can reduce rates of institutionalization. The meta-analysis by Spijker of effective non-pharmacological interventions for delaying institutionalisation found that non-pharmacological interventions with family carers in dementia significantly decrease the odds of institutionalisation (odds ratio (OR)50.66, 95% confidence interval (CI)50.43–0.99, p <.05) and significantly increase the time to institutionalisation (standardised mean difference (SMD)51.44, 95% CI50.07–2.81, P5.04). Only one study took place in the UK and was quasi experimental rather than experimental and had a low quality rating (1/6). It used Admiral nurses which are a very expensive resource and did not reduce time to institutionalization. A UK reduction of this magnitude in care home placements would have enable older people who wish to, to continue living at home, with accompanying higher quality of life and economic benefits. The prevalence of mental ill-health in family carers of people with dementia is about 40% while others have significant psychological symptoms. Our initial study was a randomised controlled study of psychological therapy provided by psychology graduates to promote coping interventions in family carers of people with dementia compared to treatment as usual. The START study is an opportunity to consider whether an intervention like this can make a difference to institutionalisation in the UK a high quality RCT. This extension study follows up the carers from 2 -7 years post study entry in terms of whether the person they care for has been admitted to a twenty-four hour care setting or has died.The study will investigate whether the therapy delay the time of entry to care homes. Its secondary objective is to see if this is linked to the carers mental state.

Lay abstract: There is evidence from the USA but not from the UK that providing specialist, individually tailored psychological support to people with dementia and their family carers can reduce rates of institutionalization. Nationally, a reduction of this magnitude in care home placements would have huge benefits for society, because most older people want to continue living at home, and report higher quality of life when they do so, compared with those placed in care homes. There are also economic benefits; the National Audit Office recently emphasised the need to “spend to save” on dementia care. The government’s 10 year plans to increase the detection of dementia (currently only 30% of cases are ever diagnosed) and improve the quality of care for people with dementia and their carers, are outlined in the National Dementia Strategy consultation document. About 40% of family carers of people with dementia have psychological disorders while others have significant psychological symptoms . The coping strategies family carers use are more important than all other factors, including the cognitive and psychiatric morbidity of the person they are caring for and the hours of care they provide, in predicting their mental health.. Our study is a randomised controlled study of psychological therapy to promote positive coping interventions in family carers of people with dementia compared to treatment as usual. This extension study follows up the patients from 2 -7 years post study entry. The study will investigate whether the therapy delay the time of entry to care homes and if so whether this is linked to the carers mental state..

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH;NEUROLOGICAL