Effectiveness of an in-home respite care program to support informal dementia caregivers: A comparative study

Study Aim/Purpose: The aim of this study was to assess the effectiveness of a 24-hour in-home respite care program in supporting informal caregivers of persons with dementia residing in the community. 

Summary of Methods: This study used a pre/post prospective quasi-experimental design to compare differences in caregiver outcomes between caregivers participating in the intervention and those receiving standard dementia care (including medical, psychological, and other health and social services) and other supportive services, but not respite care. The intervention, conducted by Alzheimer Belgium, consisted of at least 5 days of 24-hour respite provided at no cost by a trained employee. The program also included caregiver support by having the respite employee track all daily experiences and offering strategies to better deal with patients’ difficult behaviors described in the diaries. 

The final sample size for the analysis included 76 dyads in the treatment group and 73 in the comparison group. Data were collected from study participants through in-person interviews at baseline and 6 months later, with a telephone interview with the treatment group 14 to 15 days after the last intervention day. The baseline interview collected characteristics of the caregiving dyad and the patient’s resource use. At baseline and at the two post-intervention points, information was collected for the primary outcome of caregiver burden (measured using the Zarit Burden 22-item Likert scale instrument), as well as caregivers’ self-perceived health-related quality of life (using the EQ-5D-%L), frequency of behavioral problems in the dementia patients, the impact of those behaviors on the caregiver (measured with the Revised Memory and Behavior Problems Checklist), and desire to institutionalize the patient (measured with a modified version of the “Desire-to-Institutionalize” scale, identified as a reliable predictor for future institutionalization). At baseline and 14-15 days post-intervention the caregivers in the treatment group were also asked about the level of strain of caregiving and the burden on their social and family life. 

Summary of Results: After six months there was no significant difference on caregiver burden, health-related quality of life, or reported frequency or impact on the caregiver of patient behavioral problems. However, the intervention group had a significantly lower desire to institutionalize both shortly after the intervention and at six months post-baseline. Shortly after the intervention, intervention group caregivers also reported significantly lower role strain and a lower burden on social and family life compared to their baseline reports. At the same time, frequency of behavioral problems and their impact on the caregiver was not significantly different for the intervention group between baseline and post-intervention, indicating little impact of the intervention on this area. There was also a nonsignificant trend in improved health-related quality of life for caregivers in the treatment arm. 

Limitations of Study: The authors listed several limitations of the study. First, as with all non-randomized experimental designs, there remained a possibility of risk to internal validity because of confounders not measured in their propensity score matching of the treatment and control groups at baseline. They also noted that participants with lower socioeconomic status were underrepresented in the study sample. A final limitation noted was the variance in duration of respite care provided to the intervention group based on each household’s needs. 

Authors’ Discussion/Conclusions: In their discussion of findings, the authors highlight the methodological strengths of their quasi-experimental design in minimizing bias and point to the practical and ethical difficulties of conducting randomized controlled studies of respite interventions. The authors highlight the importance of the study findings on the decrease in desire to institutionalize six months after receipt of extended overnight in-home respite care. Given that this measure has been found to be a valid proxy for predicting time to actual placement in institutional care, the authors highlight the intervention’s potential effectiveness in improving patient quality of life, reduced morbidity, and reduced health care costs, which are all associated with in-home versus institutional long-term care.