A Multi-Site Cluster RCT of the Dementia Symptom Management At Home Program

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PROJECT SUMMARY/ABSTRACT As the population ages, the incidence rate of Alzheimer’s Disease and Related Disorders (dementia) is expected to triple. Most persons with dementia (PWD) will be cared for in the community. However, the support and resources to ensure proper care is provided to PWD in the community is not currently present as noted in the National Plan to Address Alzheimer’s. One form of community-based care that is frequently provided to PWD in the community is home healthcare. While these clinicians often care for PWD, few agencies, or home health clinicians are appropriately prepared to provide palliative, symptom based, patient and family centered care for this vulnerable population. There are over 10,000 skilled home healthcare agencies providing care in almost every county across the United States. Thus, home healthcare is an untapped existing resource that could be utilized more effectively to improve the quality of care and quality of life for the PWD and their informal caregiver, reduce utilization, and decrease healthcare spending. The most concerning areas in need of improvement is in managing pain and behavioral and psychological disturbances (BPSD) in the PWD as they have significant effects on both PWD and caregiver quality of life, as well as on healthcare utilization. The Dementia Symptom Management at Home Program (DSM-H) is an interprofessional evidence-based multi- component intervention developed specifically for home healthcare agencies. It includes clinician training, mentorship and evidence-based assessment instruments, careplans and caregiver teaching sheets. The DSM- H has shown strong preliminary results, and therefore this study will perform a multi-site cluster randomized efficacy trial. The DSM-H will be randomly implemented in care teams at three diverse home healthcare agencies located in different regions of the United States. The aims of this trial are to: 1) Measure the effects of the DSM-H on quality of life and symptom severity in the PWD. 2) Assess the effects of the DSM-H on quality of life, and physical and mental health in the informal caregiver of the PWD. 3) Assess the effects of the DSM-H on healthcare utilization in the PWD. This study will recruit 460 PWD-informal caregiver dyads and each dyad will be assessed on admission, 15, 30 and 60 days post admission by an independent, blinded research assistant using standardized assessment instruments. We hypothesize that the DSM-H will improve quality of life of the PWD and caregiver, improve symptom management, and reduce utilization. While other interventions have focused on home-based models, no prior interventions have used both an interprofessional model and one where an existing, widespread, service model is used. This study is therefore significant and innovative as it will be the first to test the efficacy of a potentially widely disseminable and impactful evidence-based palliative and symptom management intervention for improving the quality of life for PWD and their informal caregivers receiving home healthcare.