Donovan T. Maust

WeCareAdvisor: A Web-Based Tool to Improve Quality of Life for Military Veterans with Dementia and Their Caregivers (AZ150087)

Research Project Description
Helen C. Kales, Donovan T. Maust, Hyungjin Myra Kim

There are currently an estimated 5 million people with dementia in the US. One in 9 people over 65 has dementia and one in three people over 85.1 Because of the aging of the population, the numbers of people with dementia are expected to almost double by 2030.2 The prevalence of dementia is increasing in the military Veteran population, in tandem with the aging of the overall US population. Currently, there are an estimated 380,000 military Veterans with dementia (with an estimated 266,000 being active VA patients with dementia); this number is predicted to continue to rise, peaking in 2019.3

Although dementia is commonly thought of as a ?cognitive 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.4 BPSD are nearly universal, with most persons with dementia experiencing one or more BPSD over the course of illness.4-6 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.7 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.8

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, American Medical Directors Association), they have largely not been translated for use into standard clinical management or routine care. Furthermore, no drugs have been approved by the FDA for BPSD. However, due to lack of other options, the current mainstay of treatment is the off-label use of psychotropic medications like antipsychotics which are often used to 'sedate? people with dementia.9, 10 These medications have poor risk/benefit ratios, with limited effect on behaviors (except to sedate) and significant side effects including increased risk of stroke and mortality.4 Recognizing the risk/benefit issues, both the Centers for Medicaid and Medicare 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) which 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 who? Where? When? What is happening in the environment to trigger?) , a WeCareAdvisor Prescription is generated which 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 by and is currently undergoing initial testing in an 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 study, we would extend the testing of the WeCareAdvisor to military Veterans and their family caregivers. While there are likely to be many features of this populat

Department of Defense, Department of the Army

Funding Period: 9/15/2016 to 3/14/2019