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Supporting Caregivers Through Embedded Librarianship
- 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