Agitation and aggression, among others, known as behavioral and psychological symptoms, are hallmarks of Alzheimer's disease and related disorders. These symptoms negatively impact both persons living with dementia and their caregivers, who are typically family members.
To address this issue, the National Institute on Aging has awarded nearly $4 million to Laura N. Gitlin, PhD, Distinguished Professor and dean of Drexel University's College of Nursing and Health Professions, and Helen Kales, MD, chair of the University of California, Davis Department of Psychiatry and Behavioral Sciences, to study the impact of an easy to use, online platform, called the WeCareAdvisor.
The platform provides caregivers with education about dementia, daily tips for managing stress, and a systematic approach for describing, investigating, creating and evaluating strategies, known as the DICE approach.
"Behavioral and psychological symptoms are common and occur across disease origins and trajectories," said Kales. "Although there are no FDA-approved medications to treat symptoms, psychotropic medications (including anti-psychotics) are commonly used with high risk and limited effectiveness."
"Family caregivers are rarely informed about behavioral and psychological symptoms nor do they have opportunities to learn about specific proven nonpharmacological strategies that can prevent, reduce and/or manage these symptoms," said Gitlin.
Developed by Gitlin and Kales, with contributions from Constantine George Lyketsos, MD, professor of psychiatry and behavioral sciences at the Johns Hopkins University, the platform tailors strategies to match the presentation of behavioral symptoms of the person with dementia for whom they provide care.
For example, when a person with dementia presents with sudden onset of agitation, caregivers are informed to follow-up with a health provider to evaluate whether there is an underlying medical condition contributing to the behavior. For rejection of needed care, caregivers are provided different communication strategies, like speaking slowly or providing one to two step directions.
WeCareAdvisor offers caregivers access to knowledge about behavioral symptoms when they need it and as behaviors occur.
The study will evaluate the effectiveness of WeCareAdvisor to reduce behavioral symptoms and caregiver distress and confidence managing behavioral symptoms. It will also determine the types of prompts caregivers find most useful to successfully use the tool.
The study will enroll 326 diverse caregivers from the Philadelphia region. Using a randomized design, caregivers will be assigned to an immediate treatment group which will receive access to the online platform. All caregivers will be in the study for six months.
A previous pilot, randomized trial showed all caregivers in the study used WeCareAdvisor to help manage behavioral symptoms. Caregivers reported reduced stress levels and more confidence in caregiving after one month of use.
"The study is novel in that it will assess the efficacy and utilization of WeCareAdvisor, a tool that has great potential to impact dementia care by providing caregivers with on-demand access to behavioral and psychological symptom management strategies," said Lykestos, a co-investigator of this study.