The Going to Stay at Home program: combining dementia caregiver training and residential respite care

Study Aim/Purpose:
This Australian study examined the effects of a short term residential caregiver education and respite program called the Going to Stay at Home (GTSAH) program. GTSAH was provided to caregiver/care recipient dyads, with a care recipient who had dementia who volunteered to stay in a residential care home for five days. During their stay, caregivers received 14 sessions focusing on psychological support for them, education and information about dementia and its progression, coping and home care skills, problem solving and behavioral management techniques, developing support systems, and planning for the future. The program component for persons with dementia consisted of activities that focused on sensory and cognitive stimulation, physical activity, reminiscence, environmental orientation, creativity, social interaction, and relaxation.

Summary of Methods:
There were 85 caregiver and care recipient dyads who participated in this study. The caregivers completed validated questions from surveys and self-report questionnaires at baseline, and at 6 and 12 months post-participation. Caregiver outcomes measured included: anxiety and depression, burden, quality of life, caregiver health status, the number of caregiver needs met, and resource utilization. For the persons with dementia, the instruments measured changes in dementia behavioral symptoms and quality of life and function. The authors also compared the rate of 12-month permanent admission to a residential aged care home among GTSAH participants compared to a group of people with dementia who received residential care but did not receive the intervention. The difference in outcome measures before and after the intervention were examined using a one-way repeated ANOVA. Logistic regression was used to compare rates of residential care admissions between program participations and the comparison group.

Summary of Results:
Study analysis results found no significant changes in caregiver distress, quality of life, burden, physical or mental health over time, despite decreasing function in their care recipients over the follow-up period. Caregivers reported an increase in the number of their needs being met relating to information, practical tasks, communication and managing behavior. Finally, and most remarkable, the percent of GTSAH participants who had entered permanent residential care within 12 months was much lower than the comparison group (17.6% compared to 52.9%).

Study Limitations (as cited by authors):
The authors note several methodological limitations to this study. Foremost, they acknowledge that the study was a single arm prospective evaluation comparing caregiver and care recipient outcomes pre and post-intervention, without a control. Impact on residential placement was calculated using a comparison group, but not a control group. As a result, differences in recruitment procedures and characteristics of persons with dementia may have independently influenced the rates of permanent placement and the study sample who volunteered may not be representative of caregivers in the general population. A further limitation is that the authors were unable to conduct a cost benefit analysis based on savings achieved by reducing the rate of residential care admissions.

Authors’ Discussion/Conclusions:
The authors conclude that the study results demonstrate that GTSAH provides a model to help keep people with dementia living at home and to assist families to cope and it may have potential for achieving similar results for people living with other chronic diseases.