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

01/28/2019

ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES

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

Acknowledgments

  • 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

WeCareAdvisor

  • 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)

Usuability
Bar chart.

 

Usability
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

Summary

  • 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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