Poster for the Health Science Librarians of Illinois conference in 2016 titled Support from the Inside Out: An Embedded Librarian in a Dementia Support Group for Caregivers

1. JJ Pionke
University Library, University of Illinois at Urbana-Champaign
Support From the Inside Out: An Embedded Librarian in a Dementia Support Group for Caregivers
CONTACT INFO
Pionke@Illinois.edu
@jjpionke
AIM
 Integrate into the group to understand their
experiences and information needs
 Learn about the progression of dementia and
Alzheimer’s to demystify the process for myself and for
my mother
 Develop a resource that the support group population
can utilize taking into account their unique needs and
technological expertise
BACKGROUND
I attend the local Dementia Caregiver Support Group.
 Long distance caregiver and support person for my
parents
 Dad has had Alzheimer’s for two years
 The group provides emotional support as well as a look
into the various permutations of dementia and
Alzheimer’s
INTRODUCTION
Dementia and its related disease, Alzheimer’s, impacts
millions of elderly in the US. As the Baby Boomers
continue to age, the prevalence of both conditions will
continue to rise. Navigating all of the medical, legal, and
emotional issues involved in caring for loved ones
requires support. Alz.org has created a network of
caregiver support groups.
Some Dementia Characteristics:
 Not being able to think well enough to do normal
activities
 Losing ability to solve problems or control their
emotions
 Personality may change
 May become agitated or see things that are not there
 Memory loss
Some Alzheimer’s Characteristics:
 First involves the parts of the brain that control
thought, memory, and language
 Then, may not recognize family members
 May have trouble speaking, reading, or writing
 May forget how to brush teeth or comb hair
 Later, may become anxious or aggressive or wander
away from home
 Eventually, total care is needed
 Alzheimer’s is a form of dementia. It is progressive
and fatal.
METHODS
 Informally assess technological skill level via
observation
 What kind of cell phones do the group
members have?
 How often is tech talked about?
 What verbiage is used in discussing
tech?
 What is the average age and (dis)ability
of the group?
 Survey available platforms to best fit results of
observations.
ASSESSMENT
 Verbal feedback (positive, negative, and neutral)
 Page views at the individual folder level
 Page views at the guide level
WHAT’S NEXT
 Keep the Pearltree up to date
 Continue to attend support group meetings
 Purchase materials that the group discusses so they are
available in the library
 Recommend materials to the local public libraries
 Continue to use library jargon free language to reach
members where they are
 Do a formal assessment of the efficacy of the Pearltree
in assisting members with their information needs
Want to check out the guide?
bit.ly/dementiasupportgroup
SOURCES
“Alzheimer’s Disease” MedlinePlus.gov
“Quick Facts” Alzheimer’s Association. Alz.org
UXLib: User Experience in Libraries edited by Andy
Priestner and Matt Borg
PEARLTREES
 Visual representation
 Completely customizable
 Easy to access without an account
 Can include documents
 Custom nesting of concepts
Top level of the Pearltree
Custom nesting of topics based on group feedback of what made sense to them