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
- Funded by NINR R01 NR014200-01
- 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)
Family caregiver focus groups: 3 Key Themes
- 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."
- 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."
- 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)
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|
Reduced Caregiver Distress with BPSD (N=57)
|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|
Improved Caregiver Confidence (N=57)
|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|
Preliminary Usability Data (N=57)
- "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.
- 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.