University of Illinois at Urbana-Champaign Supporting dementia caregivers through embedded librarianship, technology, and relationship building JJ Pionke Pionke@illinois.edu University of Illinois at Urbana-Champaign

Group of symptoms caused by disorders that affect the brain. Dementia Alzheimer’s Group of symptoms caused by disorders that affect the brain. Not a specific disease. Symptoms may involve: Not be able to think well enough to do normal activities Lose their ability to solve problems or control their emotions. Personality may change. May become agitated or see things that are not there. Memory loss. First involves the parts of the brain that control thought, memory and language. Then, people may not recognize family members. May have trouble speaking, reading or writing. They may forget how to brush their teeth or comb their hair. Later on, they may become anxious or aggressive, or wander away from home. Eventually, they need total care. Alzheimer’s is a form of dementia. It is progressive and it is fatal. Talk about Medical Mayhem

Personal Story - Dad Mild to Moderate Alzheimer’s Diagnosed 2 years ago at age 70 Parents live in suburbs of Chicago My brother lives in Montana with 3 dogs, 2 kids, a bearded dragon and a wife I live in Champaign (2.5 hours away) with my cats Bro and I are long distance caregivers Caring for dad looks very different for me than for someone who is cares for a parent or spouse that lives with them or that is in a much later stage

“We are trained to give consent to people in authority “We are trained to give consent to people in authority. First it is our parents, then teachers, then bosses and politicians…But when you become mature, when you are informed, when you know yourself, you begin to make decisions about when you will and will not consent to someone else’s power.” -Chambers in Cold Anger Dementia takes power away. We blindly follow what the doctor says. Doctor as God, do not question them. Navigating the medical system, especially for a parents is bewildering, upsetting, and intimidating.

Role of the Support Group Made up of people who are in a similar situation as you. Good place to share experiences and get advice. Famous examples might be AA, AL-Anon, and many others. Alz.org supports a nationwide network of support groups for caregivers. Discuss the support group that I go to: characteristics

“People only understand things in terms of their own experience, which means that you get within their experience. Further, communication is a two-way process. If you try to get your ideas across to others without paying attention to what they have to say to you, you can forget about the whole thing.” -Saul Alinsky, Rules for Radicals Reaching people where they are.

Embedded Librianship User-oriented Physically present in the group space Expertise on the topic Ability to troubleshoot Collaborative Qualities of How does this differ from regular librarianship or traditional librarianship?

What does embedded librarianship look like What does embedded librarianship look like? How is it different from traditional librarianship?

Assessing Skill Levels Formal assessment is best Informal assessment is what I used What kind of cell phones do they have? How much/how often do they talk about computers and tech? What language do they use when referring to tech? What is the average age and (dis)ability level of the group? Talk about why there is a difference between what I know is best and what I have actually used. Lowgrade behavioral mapping

“Using ethnographic methods helps us learn about the people using our libraries because we start to understand how they use them, in ways they might not even be conscious of themselves.” -Bryony Ramsden in UXLib: User Experience in Libraries

Andy Priestner, observable behavior and what that behavior tells us about the person

Surveying the Field for a Platform Keeping in mind the informal assessment… List of links? Visual representation? Community shared document? Closed social media group?

Pearltrees Visual representation Completely customizable Easy to access without an account Can include documents Custom nesting of concepts

Created sections that made sense Created sections that made sense. Used creative commons images to represent categories

Nested categories based on user feedback Categories might not be in the order that librarians would put them in

Measuring Impact Built in page views Verbal feedback 4 squares indicate how much stuff is in that folder, the eye indicates how many people have looked at it

Next Steps Keep the Pearltree up to date Continue to attend support group meetings Purchase materials that the group discusses so it is available Recommend materials to the local public libraries Do a formal assessment

Sources “Alzheimer’s Disease” MedlinePlus.gov Cold Anger by Mary Beth Rogers “Dementia” MedlinePlus.gov The Embedded Librarian Experience by Elizabeth Phillips “Embedded Librarianship: Librarian Faculty Collaboration” Journal of Library & Information Technology v 34 no. 6. “Quick Facts” Alzheimer’s Association. Alz.org Rules for Radicals by Saul Alinsky UXLib: User Experience in Libraries edited by Andy Priestner and Matt Borg

Thank you! http://bit.ly/dementiasupportgroup JJ Pionke @jjpionke Pionke@illinois.edu