The Dementia Symptom Management at Home Program Hospice Edition

Study Overview
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Brief Summary
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Alzheimer's Disease and Related Disorders (dementia) poses a significant challenge to our public health. While many persons with dementia are cared for by friends and family in the community with the assistance of home healthcare and hospice, most clinicians and agencies are ill prepared to care for this population and therefore have difficulty assisting patients and caregivers in maintaining quality of life leading to adverse patient outcomes, increased caregiver stress and burnout, and healthcare utilization. This study will utilize a cluster randomized controlled design with 6 care teams at a single study site to examine the ability of a multi-component evidence-based practice hospice care quality improvement program for registered nurses, social workers and chaplains to improve the quality of life and reduce healthcare utilization for persons with dementia and their informal caregiver.

Official Title
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A Cluster Randomized Controlled Trial (RCT) of the Dementia Symptom Management (DSM) at Home Program Hospice Edition

Conditions
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Dementia

Intervention / Treatment
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* Behavioral: DSM-H Hospice Edition performance improvement program
* Behavioral: Usual Care


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: PWD over the age of 65 Admitted to MJHS hospice agency The patient and family caregiver speak English and/or Spanish. The informal caregiver is ≥18 years of age and spends at least 8 hours per week with the patient. Patients who score ≥6 on the Quick Dementia Rating Scale (at least mild impairment). Exclusion Criteria: Patients with a separate Axis 1 diagnosis other than forms of dementia, depression or anxiety. PWD residing in assisted living facilities, nursing homes or board and care homes PWD solely receiving infusion or home health aide services.

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Allocation: Randomized
Intervention Model: Parallel Assignment
Masking: Single


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Active Comparator: DSM-H Hospice Edition<br>training, assigning of champions to serve as mentors and performance improvement leads, and workflow changes including caregiver education pamphlets, interdisciplinary care plans, treatment algorithms, and assessment instruments. | Behavioral: DSM-H Hospice Edition performance improvement program<br>* Patients in the performance improvement group will receive care from a care team who has received the DSM-H Hospice Edition performance improvement program<br>|
| Active Comparator: Control Arm<br>Usual Care | Behavioral: Usual Care<br>* control will receive usual care from a care team who has not received the performance improvement program.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Reduction in pain (PAINAD) | pain assessment tool for use in persons with moderate to severe dementia who cannot provide reliable report, and will be used if the QDRS>12 | Day 0 and Day 30 | 
| Reduction in Behavioral and Psychological Symptoms of Dementia (BPSD) using Neuropsychiatric Inventory Questionnaire (NPI-Q): | 13-item tool that measures caregiver perception of BPSD presence and severity in PWD | Day 0 and Day 30 |