Advisory Council January 2019 Meeting Presentation: BPSD Web-based Tool



Monday, January 28, 2019

Printer Friendly Version in PDF Format (9 PDF pages)


The WeCareAdvisor™ -- A Web-based tool to help Family Caregivers Address Behavioral and Psychological Symptoms of Dementia (BPSD)

Laura N. Gitlin, Ph.D. FGSA, FAAN
Distinguished Professor, Dean, Drexel University
Adjunct Faculty, Johns Hopkins University


  • Funded by NINR R01 NR014200-01
  • Co-developers
    • Co-PI Helen C. Kales, MD
    • Co-I Constantine G. Lyketsos MD
    • Co-I Laura Struble PhD
    • Co-I Daphne Watkins PhD
    • Co-I H. Myra Kim ScD
  • Project Team
    • Barbara Stanislawski MPH MSW
    • Katherine Marx PhD MSW
    • Molly Turnwald BA
    • Christine Ribbens Grimm RN
    • Brittanny Drazich RN
    • Desiree Burgh BA MEd
    • Danny Scerpella BA
    • Jhanvi Patel MS PMP
    • UM Center for Health Communications Research (CHCR)

Tool Development -- Iterative Design Process

  • Phase I
    • Data gathering (N>102)
    • Focus groups (families, Providers)
    • Facebook survey
    • Semi-structured interviews
  • Phase II
    • Tool Development (content and look and feel)
    • Feedback from end-users
  • Phase III
    • Pilot - 2 group randomized trial
    • 2 sites (Hopkins/Michigan)
    • N=57

Family caregiver focus groups: 3 Key Themes

  1. Minimize difficulty and training needed
    • "If it needs training, it's too complicated."
    • "Make it intuitive or you will scare people away. We are stressed already."
  2. One-stop shopping
    • "Information is all piecemeal, nothing is brought together."
    • "I had a specific question and there was no systematic way to find an answer. I had to look through topic threads and hope someone responded."
  3. Tailored output
    • "I'm going to strangle somebody if I see a frequently asked questions. I can't be put into one category." "One of my frustrations about support groups is the disparity in the kind of issues people are dealing with."

Majority (>88%) willing to use a web-based program for BPSD

Kales et al Alzheimer Dis Assoc Disord 2016
Werner et al Applied Clinical Informatics 2017

Principles Underlying Tool Development

  • Easy to use
  • On demand
  • Opportunity for repeated use
  • Attention to health literacy (8th grade level)
  • Consideration of race/cultural diversity
  • Peer navigator
  • Addresses full range of behaviors
  • Strategies customized to a specific symptom and context
  • Generation of a treatment plan reflecting the varied contributors to behavior


  • Peer navigator
  • DICE approach
    • WeCareAdvisor Prescription
  • Caregiver Survival Guide
  • Daily messaging (emails)
Website screenshots.

Study Flow Chart

Study flow chart.

Caregiver Demographics (n=57)

  • No significant differences between WeCareAdvisor and Waitlist groups
  • 65 years old
  • Mostly women (>70%)
  • Most had high school education
  • Most spouses
  • 63% White
  • 33% African American

One Month Use Data (N=33)

  • Total Logins = 608
    • Avg. 18.4 logins (SD=18.5, range 1 - 108)
  • Total DICE Sessions = 312
    • Avg. 9.5 sessions (SD=7.0, range 1 - 29)
  • Number of Logins significantly associated with
    • Number of DICE Sessions (r = .483, p = .004)
    • Gender (Male) (r = .433, p = .012)

One Month Use Data --Hopkins Site

Specific BPSD by Number of Dice Sessions and Number of Caregivers
Bar chart: Agitation--# of DICE Sessions (60), # of Caregivers (18); Apathy--# of DICE Sessions (38), # of Caregivers (10); Toileting--# of DICE Sessions (37), # of Caregivers (12); Motor Disturbances--# of DICE Sessions (33), # of Caregivers (12); Delusions--# of DICE Sessions (23), # of Caregivers (10); Appetite/Eating--# of DICE Sessions (22), # of Caregivers (11); Nighttime Behaviors--# of DICE Sessions (22), # of Caregivers (11); Anxiety--# of DICE Sessions (20), # of Caregivers (11); Depression--# of DICE Sessions (18), # of Caregivers (5); Aggression--# of DICE Sessions (14), # of Caregivers (7); Irritability--# of DICE Sessions (11), # of Caregivers (5); Hallucinations--# of DICE Sessions (8), # of Caregivers (6); Disinhibition--# of DICE Sessions (6), # of Caregivers (5).

Reduced Caregiver Distress with BPSD (N=57)

Effect Estimate Standard Error t-value Pr>t
WeCareAdvisor (1 month -- Baseline) -6.25 1.39 -4.51 <0.0001
WeCareAdvisor vs. Waitlist -4.45 1.88 -2.37 0.02
Waitlist (2-month-1 month) -3.83 1.29 -2.97 0.004
  • WeCare had significant improvement from Baseline to 1 month, significantly greater improvement than Waitlist. After receiving tool, Waitlist also had a significant decline in distress
  • Mixed model results adjusted for site

Improved Caregiver Confidence (N=57)

Effect Estimate Standard Error t-value Pr>t
WeCare (1 month- baseline) 1.12 1.84 0.61 0.54
WeCare vs. Waitlist 7.52 2.52 2.99 0.004
Waitlist (2 month-1 month) 4.67 1.74 2.68 0.009
  • WeCare had significantly higher change in confidence as compared to Waitlist
  • Waitlist had a significant improvement in confidence after 1 month of tool use (t=4.56, p<0.0001)
  • Mixed model results adjusted for site

Preliminary Usability Data (N=57)

Bar chart.


Bar chart.

Caregiver Feedback-Positives

  • "Wonderful new tool in my caregiving arsenal"
  • "DICE structures my thinking"
  • "Survival guide is comprehensive"
  • "I shared the tool with my support group and everyone was impressed by the content and ease of use"
  • "Love the feeling of support"
  • "Ease of use very nice"
  • "Daily tips are awesome"
  • "I wish I would have had this a long time ago"
  • "I learned a great deal more about dementia and the skills to use in dealing with related behaviors"
  • "This week PWD had a UTI and the WeCareAdvisor helped to trigger in my mind that something was wrong and he should see the doctor
  • "We can go to the doctor, go to support groups, but I see the value of having this daily. This is advice every day.

Caregiver Feedback-Suggestions

  • Videos to demonstrate strategies
  • Too much text, more graphics
  • For some, would have been more helpful to have earlier in the disease process
  • Some highly specific symptoms not addressed by tool


  • Significant decrease in caregiver distress
  • Significant change in caregiver confidence
  • Waitlist showed similar benefits
  • No significant impact for BPSD
  • Preliminary usability data very positive.

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