Study protocol of the Going to Stay at Home program: evaluation of a residential carer training program to reduce dementia carer distress and burden

Abstract

Abstract Background Caring for a person with dementia has profound physical, psychological, social and financial impacts on the carer, while morbidity in carers has detrimental effects on outcomes in people with dementia. A 10-day hospital-based residential carer training program (BMJ 299(6712):1375–1379, 1989) delayed residential care placement, delayed mortality, reduced carer’s psychological morbidity and lowered care costs. This study aims to evaluate the effects of a similar program adapted for use with residential respite. Methods/Design This is a single-arm longitudinal study conducted at a residential aged care facility involving 100 people with dementia and their primary carers. In a 7-day residential program, carers will attend intensive training sessions while the people with dementia are engaged in daily activities. Data will be collected at the start of the residential program (baseline), at 6 months (post 1) and at 12 months (post 2) after completion of the program. The primary outcome is carer psychological distress. Secondary outcomes include carer burden, carer quality of life and time to residential care placement. Discussion This study will provide evidence on the effectiveness of the program in reducing carer distress and burden as well as delaying institutionalisation of the person with dementia, which may have important implications for policy.