Agitation and aggression are just a few of the behavioral and psychological symptoms that people with Alzheimer’s disease and related disorders – and their caregivers -- can have difficulty understanding and managing.
But an easy-to-use online platform, called WeCareAdvisor, aims to bridge the information gap for caregivers, who are typically family members. The tool educates caregivers about dementia and provides daily tips for managing stress. It also offers a systematic approach for describing, investigating, creating and evaluating strategies, known as the DICE approach.
UC Davis psychiatry department chair Helen Kales and Drexel University’s nursing school dean Laura Gitlin developed the platform with contributions from Constantine George Lyketsos of Johns Hopkins University.
The team received a $4 million grant from the National Institute on Aging to see if WeCareAdvisor helps to reduce behavioral symptoms and caregiver distress. It also will assess caregiver confidence in managing behavioral symptoms and seek their input on improving the tool.
“Behavioral and psychological symptoms are common and occur across disease origins and trajectories,” Kales said. “Although there are no FDA-approved medications to treat symptoms, psychotropic medications (including anti-psychotics) are commonly used with high risk and limited effectiveness.”
According to Gitlin, family caregivers are rarely informed about behavioral and psychological symptoms and may not have opportunities to learn about specific proven nonpharmacological strategies that can prevent, reduce or manage these symptoms.
The platform tailors strategies for caregivers by behavioral symptoms. For example, when a person with dementia presents with sudden onset of agitation, caregivers are advised to follow-up with a health provider to evaluate whether there is an underlying medical condition contributing to the behavior. If medical care isn’t needed, caregivers are given strategies to help communicate to help manage the situation, such as speaking more slowly so the person with dementia has a chance to understand.
The physicians believe WeCareAdvisor gives caregivers access to knowledge about behavioral symptoms when they need it and as behaviors occur.
The six-month study will enroll 326 diverse caregivers from the Philadelphia region. Using a randomized design, caregivers will be assigned to an immediate treatment group that will have access to the online platform.
A pilot study of WeCareAdvisor showed all caregivers who used the platform to help manage behavioral symptoms reported lower stress levels and more confidence in caregiving after one month of use.
“The current 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 the study.