WeCareAdvisor: A Web-Based Tool to Improve Quality of Life for Military Veterans with Dementia and Their Caregivers
Abstract
There are currently an estimated 5 million people with dementia in the United States. One in 9 people over age 65 has dementia and 1 in 3 people over age 85. Because of the aging of the population, the numbers of people with dementia are expected to almost double by 2030. The prevalence of dementia is increasing in the military Veteran population, in tandem with the aging of the overall US population, as well as a result of the increasing incidence of traumatic brain injury (TBI) and post-traumatic stress disorder (PTSD). Currently, there are an estimated 380,000 military Veterans with dementia (with an estimated 266,000 being active Department of Veterans Affairs [VA] patients with dementia); this number is predicted to continue to rise, peaking in 2019. Although dementia is commonly thought of as a "memory disorder," behavioral and psychological symptoms (BPSD) often dominate both the presentation and course of the disease. BPSD include agitation, depression, apathy, aggression, anxiety, socially and sexually inappropriate behaviors, and wandering. BPSD are nearly universal, with most persons with dementia experiencing one or more BPSD over the course of illness. One-third of dementia care costs have been linked to BPSD due to high rates of health service utilization including hospitalization and nursing home care and family time spent in supervision. Compared to family caregivers managing people with other chronic illnesses or dementia without BPSD, caregivers managing BPSD are profoundly affected with significantly higher rates of distress, depression, and lower quality of life. While non-medication (behavioral and environmental) strategies are recommended as first-line treatment by all expert organizations (American Medical Association, American Psychiatric Association, American Geriatrics Society, etc.), they have largely not been translated for use into standard clinical management or routine care. Furthermore, no drugs have been approved by the Food and Drug Administration (FDA) for BPSD. However, due to lack of other options, the current mainstay of treatment is the off-label use of psychiatric medications like antipsychotics, which are often used to "sedate" people with dementia. These medications have limited effect on behaviors (except to sedate) and significant side effects including increased risk of stroke and mortality. Recognizing the risk/benefit issues, both the Centers for Medicare and Medicaid Services (CMS) and the VA (via the Psychotropic Drug Safety Initiative) have led major efforts to reduce antipsychotic use in people with dementia; however, the lack of "off-the-shelf" alternatives for managing BPSD without drugs and without requiring substantial training of families and/or staff is a major limitation. The "WeCareAdvisor" is a web-based tool developed to help family caregivers manage behavioral symptoms in family members who have dementia. The tool is composed of two sections. One section uses a decision-making algorithmic approach (referred to as DICE - Describe, Investigate, Create, Evaluate) that walks families through the potential underlying contributors to BPSD. Based on the caregiver s responses to questions about the behavior and context in which it occurs (With whom? Where? When? What is happening in the environment to trigger?), a WeCareAdvisor Prescription is generated that reflects a set of strategies tailored to the unique situation of the user. Another section of the tool, the Caregiver Survivor Guide, provides valuable information about dementia, BPSD, and resources. The WeCareAdvisor was developed and is currently undergoing initial testing in a National Institutes of Health (NIH)-sponsored (R01 NR014200-01, Kales and Gitlin Co-PIs) randomized two-site controlled trial in Ann Arbor and Baltimore with 60 caregivers. Extensive caregiver input was used to create the WeCareAdvisor to give caregivers the right information at the right time. In the proposed
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Jan 31, 2017
- Source ID
- W81XWH1610551
Entities
People
- Helen C Kales
Organizations
- United States Army
- University of Michigan