Translation of the Care of Persons with Dementia in their Environments (COPE) intervention in a publicly-funded home care context: Rationale and research design

Abstract

Background

Dementia is the leading cause of loss of independence in older adults worldwide. In the U.S., approximately 15 million family members provide care to relatives with dementia. This paper presents the rationale and design for a translational study in which an evidence-based, non-pharmacologic intervention for older adults with dementia and family caregivers (CGs) is incorporated into a publicly-funded home care program for older adults at risk for nursing home admission.

Methods

The 4-month Care of Persons with Dementia in their Environments (COPE) intervention is designed to optimize older adults' functional independence, and to improve CG dementia management skills and health-related outcomes. COPE features 10 in-home occupational therapy visits, and 1 in-home visit and 1 telephone contact by an advanced practice nurse. COPE was deemed efficacious in a published randomized clinical trial. In the present study, older adults with dementia enrolled in the Connecticut Home Care Program for Elders (CHCPE) and their CGs are randomly assigned to receive COPE plus their ongoing CHCPE services, or to continue receiving CHCPE services only.

Outcomes

The primary outcome for older adults with dementia is functional independence; secondary outcomes are activity engagement, quality of life, and prevention or alleviation of neuropsychiatric symptoms. CG outcomes include perceived well-being and confidence in using activities to manage dementia symptoms. Translational outcomes include net financial benefit of COPE, and feasibility and acceptability of COPE implementation into the CHCPE. COPE has the potential to improve health-related outcomes while saving Medicaid waiver and state revenue-funded home care program costs nationwide.

Introduction

Dementia, an umbrella term encompassing multiple causes of brain neurodegeneration and multiple patterns of associated cognitive decline and neuropsychiatric symptoms, affects > 46 million people worldwide; by 2050, this number will reach > 130 million people [1]. Considered a global public health priority, dementia is the principal cause of morbidity burden; in 2015, the estimated cost of dementia worldwide was $818 billion [1]. > 5 million Americans have dementia and > 15 million unpaid caregivers, mostly family members, provide care to these individuals. Persons with dementia plus other health problems generate greater Medicare and Medicaid expenditures than those with similar health problems without dementia [2].

In the absence of widely effective pharmacotherapy to combat dementia and its health-related consequences, translation and implementation of evidence-based, non-pharmacologic interventions into existing service programs are sorely needed to improve outcomes for persons with dementia and their family and other informal caregivers (CGs), thereby potentially avoiding or delaying costly hospitalizations and nursing home admissions [3]. The Connecticut Home Care Program for Elders (CHCPE), a combined Medicaid and state-funded program for older adults at high risk for nursing home admission, provides in-home and community-based services coordinated by care managers [4]. However, CHCPE clients with dementia (25–30% of all clients) do not routinely receive evidence-based services directed at their cognitive impairment that could potentially improve their health-related outcomes and sustain living at home. Moreover, no CHCPE services currently engage CGs to help improve their dementia-related symptom management skills and health-related outcomes. Thus, the CHCPE is an ideal setting for translating an evidence-based, non-pharmacologic intervention designed to reduce functional disability in older adults with dementia and improve CG dementia management skills.

In this paper, we describe a translational study in which an evidence-based intervention, Care of Persons with Dementia in their Environments (COPE), is incorporated into the CHCPE. COPE is a 4-month, in-home, non-pharmacologic intervention using occupational therapists and advanced practice nurses to optimize functional independence in older adults with dementia, and to improve CG dementia management skills. In the original COPE randomized trial with community volunteers, persons with dementia receiving COPE experienced less functional decline and more activity engagement designed to keep them independent, compared to an attention control group. CGs receiving COPE, compared to controls, reported improved well-being, increased confidence in using behavioral strategies to address dementia symptoms, and greater ability to keep their family member at home [5].

We will randomly assign 290 CHCPE clients with dementia and their CGs to receive the COPE intervention plus customary CHCPE services or customary CHCPE services alone. Primary and secondary client-specific and CG-specific outcomes will be similar to those in the original COPE trial, to determine whether similar outcomes are obtained in a real-world setting. To maximize translational effort, we will: conduct a cost-benefit analysis to determine potential economic benefits of adding COPE to customary CHCPE services; gather interview-based and focus group data from CHCPE care managers and other stakeholders to evaluate feasibility and acceptability of COPE as a new CHCPE service; and convene a Translational Advisory Committee of experts in publicly-funded home care programs for older adults to help guide COPE dissemination and implementation activities.