1. Support From the Inside Out: An Embedded Librarian in a Dementia Support Group for Caregivers
JJ Pionke University Library, University of Illinois at Urbana-Champaign
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
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
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
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
CONTACT INFO
@jjpionke