Dementia is a prevalent, growing public health problem; over 5 million Americans suffer from the condition and up to 16 million people are projected to be affected by 2050. Neuropsychiatric symptoms in dementia are often treated with medications having greater evidence of adverse effects than benefits. Patients with dementia are at risk for inadequate recognition and management of pain; receive burdensome treatments; and suffer with insufficient involvement of palliative care services. Family caregivers receive inadequate support in the face of substantial stress. Patients and families are poorly served by interventions and models that present dementia- specific care and palliative care as mutually exclusive options. The overarching goal of this research by Dr. Sachs?s team is to improve the care of community dwelling patients with dementia and their family caregivers through an innovative model of supportive care that combines an existing, evidence-based intervention for dementia care with an innovative intervention for palliative care in dementia. The intervention projects this care into the homes of patients and caregivers, empowering caregivers, and integrating with ongoing care. The proposed randomized controlled trial compares the IN-PEACE intervention (Indiana version of Palliative Excellence in Alzheimer Care Efforts) to usual care for community dwelling patients with moderate to severe dementia and their family caregivers. IN-PEACE will enroll 200 patient-caregiver dyads, randomizing 100 dyads each to the intervention and usual care arms and follow for 24 months with outcome assessments at 3, 6, 9, 12, 15, 18, 21 and 24 months by research assistants blinded to treatment group. The core of the multi- component intervention is regular, proactive telephone contact by a dementia care coordinator (DCC; social worker or RN) to anticipate and identify patients? symptoms and caregivers needs and address them utilizing specific, evidence-based protocols. Protocols cover basic dementia care, caregiver distress, neuropsychiatric symptoms, pain, navigating the hospital, feeding difficulties, and transition to hospice. The intervention also involves advance care planning and support with caregivers tailored to decisions faced in dementia care, highlighting where palliative care options can replace the default that often results in burdensome treatments. DCCs are supported by weekly meetings of the interdisciplinary research team, as well as collaboration with patients? primary care providers and community services. The primary aim of IN-PEACE is to test the effect of the intervention on patients? neuropsychiatric symptoms.
Other aims i nclude testing the effect of IN-PEACE on patients? overall symptom outcomes, caregiver mood and distress, and the provision of burdensome treatments to patients (hospitalizations and emergency room visits). IN-PEACE is based on an innovative supportive care model; utilizes an innovative intervention that integrates evidence-based dementia care and palliative care; and is fielded in an innovative practice based network that focuses on enhancing dementia care in the community. This will be the first study of its kind, reshaping the nature of future interventions in this field.
Dementia is a tremendous public health problem with our society facing its growing prevalence as the 6th leading cause of death in the United States. Patients and caregivers experience significant burden of suffering from and related to this condition. As the number of people with dementia triples over coming decades, we need new models of care that reach out to patients and families in the community to reduce patient suffering and support caregivers.