1. Catherine Bobbitt
University of Illinois at Chicago, Chicago, IL
Search Strategies for Health Information about Memory Loss
SYSTEMATIC REVIEW:
• Frequency of use and information needs depend
upon the caregiver
SOURCE OF HEALTH INFORMATION:
• Source preference by gender was inconsistent
between survey and interview results
• Electronic and word of mouth with professionals
or friends were most preferred and trusted
DESIRED HEALTH INFORMATION:
• Gender did not affect desired health information
• Disease information was most desired by both
LIMITATIONS:
• Relationship of caregiver to person with memory
loss was not analyzed due to small sample size
FUTURE PLANS:
• Compare source of outreach and desired health
information of caregiver with disease stage of
person with memory loss
• Collected data will impact
the design and content of
the Illinois Cognitive Resources Network
CONCLUSIONRESULTS
• Prevalence of dementia is increasing with the
rapidly aging population
• Health information and outreach of services are
increasing in importance to caregivers and family
members of persons with memory loss
• Internet users look online for health information
related to memory loss
BACKGROUND
• Alzheimer’s Association. (2014). 2014 Alzheimer’s Disease Facts and Figures Report. Retrieved from
https://www.alz.org/alzheimers_disease_facts_and_figures.asp
• Chiu, T., Marziali, E., Colantonio, A., Carswell, A., Gruneir, M., Tang, M., & Eysenbach, G. (2009). Internet-based caregiver support for Chinese
Canadians taking care of a family member with Alzheimer disease and related dementia. Canadian Journal on Aging/La Revue canadienne du
vieillissement, 28(04), 323-336.
• Chiu, T. M., & Eysenbach, G. (2011). Theorizing the health service usage behavior of family caregivers: a qualitative study of an internet-based
intervention. International journal of medical informatics, 80(11), 754-764.
• Farrow, M. (2013). User Perceptions of a Dementia Risk Reduction Website and Its Promotion of Behavior Change. JMIR research protocols,
2(1).
• Fox, S. (2011, February 1). Health Topics. Retrieved from Pew Research Center: http://pewinternet.org/Rep
• Kernisan, L. P., Sudore, R. L., & Knight, S. J. (2010). Information-seeking at a caregiving website: a qualitative analysis. Journal of medical
Internet research, 12(3).
• International Psychogeriatric Association. (2012). Complete Guide to Behavioral and Psychological Symptoms of Dementia – Specialists Guide.
Module 5, Non-pharmacological Treatments. Chicago: IPA.
• Weitzman, P., Neal, L., Chen, H., & Levkoff, S. E. (2008). Designing a culturally attuned bilingual educational website for US Latino dementia
caregivers. Ageing International, 32(1), 15-24.
• World Health Organization. (2014). Interesting facts about ageing. Retrieved from http://www.who.int/ageing/about/facts/en/
SOURCES
• Raj Shah, MD
• Joe Zanoni, PhD, MILR
• Kirstie Danielson, PhD
• Susan Frick, MSW, LSW
• Scarlett Ellis
• Kriti Samaymantri
• Illinois Cognitive
Resources Network
• Rush Alzheimer’s
Disease Center
• Without Warning
Support Group
ACKNOWLEDGEMENTS
1. Assess effectiveness and usability of websites
designed to inform about memory loss
2. Measure caregiver or family members’ preferred
source of outreach and desired health information
OBJECTIVES
SYSTEMATIC REVIEW
DEMOGRAPHICS DESIRED HEALTH INFORMATION
SOURCE OF HEALTH INFORMATION
METHODS
POPULATION:
• 20 past and current
caregivers or family
members of persons
with memory loss
COMPARATIVE GROUP:
• Gender (Male vs Female)
• Type of caregiver
(Spouse vs Adult Child)
OUTCOME:
• Source of health
information
• Desired health
information
DATA COLLECTION:
• 11-item interview
• 14-item survey
ANALYSIS:
• Qualitative:
Thematic analysis
• Quantitative:
Inferential statistics
*IRB APPROVED
MIXED-METHODS
INCLUSION CRITERIA:
• Published after 2000
• Websites informing
about memory loss
• Audience: Caregivers
COMPARATIVE GROUP:
• Traditional media, if
applicable
OUTCOME:
• Effectiveness
• Usability
KEYWORD SEARCH:
• Academic Search
• Google Scholar
• PubMed
• Oct. 22–Nov. 5, 2014
DATA COLLECTION:
• Abstracts reviewed
independently
• Ineligible excluded
• Data extracted from
five full papers
SYSTEMATIC REVIEW
0
2
4
6
8
10
12
14
16
C T C T C T C T C T
Electronic Traditional Friends Family Professionals
Top Ranked Most Common and Trustworthy Sources from Survey
Female
Male
C=Common
T = Trustworthy
0 1 2 3 4 5
Female
Male
Female
Male
Female
Male
Female
Male
Female
Male
25-3536-4546-5556-6566-75
Gender, Age Distribution, and Relationship of
Caregiver to Person with Memory Loss
Spouse Child Relative Other
Preferred
Source
Percentage
N=20
Quotes from Qualitative Interview
Electronic
30% Male
20% Female
"I can get more information electronically and a lot faster than word of mouth."
“Electronic is fine. I look at email- I get some stuff from different organizations;
that works best for me because then I can look at email at my convenience."
Traditional
0% Male
0% Female
"I looked at books before and didn't really like any of them."
“You have to get out of the house and go to the library; it’s inconvenient.”
Word of
Mouth
5% Male
45% Female
"I do think that word of mouth and the actual experiences that some people
have can be a little bit more helpful than some of what comes through the
media just because it's first-hand experience."
"Personal recommendations, thoughts, or experiences that people have gone
through and how they've dealt with it; that has helped me the most."
Category of
Information
Percentage
N=20
Quotes from Qualitative Interviews
Disease
10% Male
25% Female
"The thing I searched the most was the stage he was
at because I wanted to know where he was in
progression."
Behavioral
5% Male
15% Female
"How to deal with agitation- getting frustrated and
stuff; techniques working with that."
Medical
10% Male
10% Female
"If there are any new treatments or drugs that might
slow down the process; that's mainly what I look for."
Practical
Caregiving
10% Male
15% Female
"Helpful hints for caregiving"
Caregiving
Support
5% Male
0% Female
"How to cope"
Services
Available
10% Male
20% Female
"I'm always looking for daycare type places- places
people can go and get some stimulation, as well as
the caregiver gets a break."
Legal and
Financial
5% Male
15% Female
"Looking into financial assistance and how to protect
assets going forward.”
Driving
0% Male
10% Female
"Information on how to take the car keys away; how
to handle him when you do that."
Language
5% Male
15% Female
"Pointers on communication- what language skills can
I use to communicate with patients?"
Nothing in
Particular
5% Male
5% Female
"I don't really search for it- I'll read them whatever
articles I come across."
0 2 4 6 8 10
Financial
Services
Caregiving
Support
Practical
Caregiving
Medical
Behavioral
Disease
Top Ranked Information of
Importance from Survey
Male Female
Reference N Effectiveness Usability
Chiu, 2009
28
Perceived burden decreased in
frequent users
Occasional and frequent
users; Bilingual capabilities
10
Helpful; Belief and service
needs depend on caregiver;
Perceived burden decreased in
frequent users
Comprehensive and easy
to read; All information in
one place; Bilingual
capabilities
Chiu, 2011 14
Information needs depend on
caregiver; Style of use depends
on caregiver
Internet access barriers
Farrow,
2012
123
Helpful, interesting, and
informative; Knowledge
increased after website visit
Layout is easy to navigate;
Content is easy to
understand
Kernisan,
2010
2161
Content satisfied more than half
of caregiver needs; Information
needs depend on caregiver
Weitzman,
2008
31
Knowledge increased after
website visit; Real life stories
illustrated key points
Linguistic errors in text;
Bilingual capabilities
12
Content was informative; Real
life stories were engaging
Independently navigate
website; Easy to find
content; High readability;
Bilingual capabilities