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

Meredith Gresham,Ruby S M Tsang,Henry Brodaty,Megan Heffernan

doi:10.1186/2193-1801-3-330

Meredith Gresham, Ruby S M Tsang + Show 2 more

Open Access

https://doi.org/10.1186/2193-1801-3-330

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Abstract

BackgroundCaring 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/DesignThis 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.DiscussionThis 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.

Highlights

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 Prince Henry Hospital residential carer training program proved effective in delaying residential care placement, delaying mortality, reducing carer’s psychological morbidity and lowering care costs (Brodaty and Gresham 1989; Brodaty and Peters 1991; Brodaty et al 1993, 1997). These results suggest that carer training provided early in the course of dementia has significant benefits on the outcomes of people with dementia, and such intensive carer training programs should be made more extensively available
Recruitment of participants People with dementia and their primary carers enrolled in the Going to Stay at Home program at the residential aged care facility (RACF) will be invited to participate in this evaluation study

Summary

Introduction

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. Informal carers play a pivotal role in the lives of people with dementia living in the community. They provide assistance with core and non-core activities, either continuously or for more than 40 hours per week (Ory et al 1999; AIHW 2012). High levels of burden have been consistently reported in carers of people with dementia (Schulz et al 1995; Baumgarten et al 1992; Haley et al 1987; Pinquart and Sörensen 2003) and such burden may persist up to two years after the person with dementia’s admission to formal care (Waltrowicz et al 1996). Carers of people with dementia generally report poorer health (Haley et al 1987; Baumgarten et al 1992) and greater use of health services (Haley et al 1987; Kiecolt-Glaser et al 1991) than their non-caregiving counterparts

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