Supporting dementia caregivers through embedded librarianship,

technology, and relationship building

JJ PionkePionke@illinois.edu

University of Illinois at Urbana-Champaign

Dementia

• 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.

Alzheimer’s

• 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.

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

“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

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.

“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

Embedded Librianship• User-oriented• Physically present in the group space• Expertise on the topic• Ability to troubleshoot• Collaborative

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?

“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

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

Nested categories based on user feedback

Measuring Impact• Built in page views• Verbal feedback

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.govCold Anger by Mary Beth Rogers“Dementia” MedlinePlus.govThe 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.orgRules for Radicals by Saul AlinskyUXLib: User Experience in Libraries edited by Andy Priestner and Matt Borg

Thank you!

http://bit.ly/dementiasupportgroup

JJ Pionke

@jjpionke

Pionke@illinois.edu