June 2021 | XXXIX. Issue 2 »

Understanding Your Patrons with Dementia

June 1, 2021
Mary Beth Riedner

Before the pandemic, people living with dementia were frequently walking into Illinois libraries (and hopefully will again soon). In 2020, over 230,000 Illinoisans had Alzheimer’s, or another dementia, and that number is projected to grow by 13% by 2050 (Alzheimer’s Association, 2021). Most of them still live at home; less than 20% live in residential communities (Lepore, 2017). They come from all walks of life and are unique individuals with their own histories, life experiences, and interests. Despite their diagnosis, they want to retain their identity, dignity, and independence and continue to be treated with respect as valued members of their community. Social isolation and loneliness are nothing new for those living with dementia. There has been, and still is, a strong stigma surrounding this disease caused by fear and lack of information that keeps people living with dementia isolated.

This article is based on the responses of 12 Illinois libraries to a recent survey regarding services and programs for what is an often-underserved patron group. Their thoughtful responses explore topics such as why they are providing services/programs, what value libraries can add to the quality of life for these patrons, the benefits of staff dementia awareness training, and utilizing new methods to meet the needs of these patrons. Links to resources mentioned can be found in the sidebar.

WHAT IS THE LIBRARY’S ROLE?
In recent years, our society has begun to take steps to become more “dementia friendly.” For example, Dementia Friendly America is a nationwide network of communities that are committed to “foster the ability of people living with dementia to remain in community and engage and thrive in day-to-day living” (Dementia Friendly America, 2021). Seventeen Illinois communities have achieved this designation to date. The Evanston Public Library, the Gail Borden Public Library District, and the Orland Park Public Library are heavily involved in their communities’ Dementia Friendly initiatives. Several others, such as the Deerfield Public Library, are participating in their communities’ planning efforts to achieve a dementia friendly designation.

Most libraries have inclusive language in their mission statements indicating a desire to serve everyone living in their communities. As Gayle Florian, Antioch Public Library, says, “We can create a warm, welcoming community where [people with dementia] feel respected and comfortable.” Glenna Godinsky, Gail Borden Public Library District, says that, with library programming, “the stigma of dementia is reduced; a safe, understanding space is created; and social isolation is reduced.” Christy Wagner reports that the Ela Area Public Library has had a long-standing commitment to serving these patrons and, as a result, their “quality of life is increased through engagement and social stimulation.” Brooke Hansen, Effingham Public Library, states, “We believe that everyone benefits from literature…. Providing services/programs for those living with dementia is clearly a responsibility of a library.”

In addition to providing a welcoming space, libraries are a treasure trove of books, magazines, CDs, and DVDs that can be effectively used to engage people living with dementia to stimulate memories and conversation. Nina Kenney and Joy Johnson, Lake Villa District Library, point out that, “By providing library materials and programs to those living with dementia (especially those who still live independently), we’re providing opportunities to exercise their minds and expand their world.” Brooke Hansen, Effingham Public Library, states it succinctly by saying “Literacy—whether it is being read to or simply enjoying the task of turning pages to look at pictures—is beneficial to those living with dementia. Even in the late stages of dementia, books, pictures and stories can still be enjoyed and the personal interaction that sharing those require makes an impact on people’s lives.”

The author’s late husband, Steve, four years after diagnosis with a young-onset dementia along with materials demonstrating his personal interests. Photo Credit: Mary Beth Riedner

Libraries are increasingly making a formal commitment to serve those living with dementia. Sarah Kleiva reports that the Orland Park Public Library incorporated specific objectives and action steps to serve their patrons with dementia and their caregivers into their current strategic plan. Bari Ericson, Wheaton Public Library, says that “Reaching out to this community in a larger way was a goal in 2019-2020. We were just starting to make connections and get programs running when the pandemic hit.” Recognizing the need to take further steps, Jonathan Gaskill, Waukegan Public Library (WPL), frankly admits, “Our strategic plan has been a guiding document for WPL, though conspicuously absent from said plan is working with older patrons and those experiencing dementia.”

Perhaps a request from Patricia Naisbitt, Woodridge Public Library, for “shared library programming…for an improved use of time and resources” might serve as a call to further action. Collaboration among librarians benefits everyone. The American Library Association (ALA) has a community of interest called Library Services for Dementia/Alzheimer’s (LSDA; formerly IGARD) to facilitate national discussion and networking for librarians serving this population. The Reaching Across Illinois Library System (RAILS) has also established a “Serving Patrons with Dementia Group” for networking among Illinois librarians.

STAFF TRAINING
An effective way for a library to become “dementia friendly” is to have all staff members participate in dementia awareness training. While professional development for management and department heads is important, training for front-line staff, who interact most frequently with those living with dementia, is also essential.

In 2019, the National Network of Libraries of Medicine (NNLM) funded a grant called “Dementia Awareness for Public Libraries.” Four of the responding libraries participated in the grant through in-person all-staff training conducted by gerontologist Christine Damon. The NNLM training provided detailed information about dementia and those living with it, as well as communication techniques for successful interactions. Jonathan Gaskill, Waukegan Public Library, indicates that “Training was effective, and helped spark interest in helping the whole patron, empathy for our patrons, and made for plenty of conversations around ‘how does this apply to us?’” According to Nina Kenney and Joy Johnson, Lake Villa District Library, the training was “eye-opening for staff and alerted them as to how those living with dementia experience the world.” Two webinars were also created as a part of the grant and are available for free online.

There are many reliable sources for information about dementia on the Web such as the Alzheimer’s Association and medical research centers like Northwestern Medicine’s Mesulam Center for Cognitive Neurology and Alzheimer’s Disease. The U.S. Department of Health and Human Resources and the National Institutes of Health recently unveiled a comprehensive new government website called Alzheimers.gov. An important resource for librarians is the still pertinent “Guidelines for Library Services to Persons with Dementia” published by the International Federation of Library Associations (IFLA) in 2007.

Other organizations offer dementia awareness training. Judy Hoffman, Deerfield Public Library, reports individuals attending live online training provided by the Dementia Friendly Deerfield initiative. Training may also be provided by the federally funded Area Agencies on Aging (AAA), such as AgeGuide for Northeastern Illinois. There are 13 AAAs located across Illinois. The Effingham Area Alzheimer’s Awareness organization provided training for the Effingham Public Library. Dementia Friends, a subset of Dementia Friendly Illinois, also offers online dementia awareness training to groups via Zoom.

INNOVATIVE MATERIALS & SERVICES
In addition to traditional home delivery, which has been very effective during pandemic times, libraries have begun developing kits designed for those living with dementia. As Glenna Godinsky, Gail Borden Public Library District, points out, “Most people with dementia are able to read through the later stages.” Paula Shapiro and Bridget Petrites, Evanston Public Library, describe their kits as containing “books, DVDs and CDs that are appropriate for those on the memory loss spectrum. They include puzzles, games and other mind and memory activities.” Nina Kenney and Joy Johnson, Lake Villa District Library, say that they are “developing ‘memory kits’ that will include activities…to reinforce skills, stimulate memory and serve as conversation starters.” The Forget Me Not Resource Center at the Effingham Public Library provides reminiscence toolkits created by Effingham Area Alzheimer’s Awareness.

Over the years, libraries report bringing wonderful outreach services to those living in local residential memory care facilities and nursing homes. Recently, however, some have begun to offer in-library programming for the 81% of dementia patrons still living at home. One such program is the drop-in Adult Coloring Night hosted by the Woodridge Public Library.

Four responding libraries have also begun hosting, or participating in, Memory Cafes for people living with dementia and their care partners, often offered in conjunction with their local dementia friendly community. The Wheaton Public Library was only able to offer one in-person memory café before the pandemic hit, but Ericson reports that in March 2021 twelve seniors attended the library’s first virtual memory café with an art museum theme. The Gail Borden Public Library District participates in two monthly memory cafes, one in English and one in Spanish. The Ela Area Public Library launched their first monthly memory café in May 2019 in conjunction with their local Council on Aging. Christy Wagner, Ela Area Public Library, says, “The café uses books, poetry, music and visual images…to stimulate memory and conversation.” Responding to the pandemic, Paula Shapiro and Bridget Petrites indicate that the Evanston Public Library hosts a weekly virtual Memory Café via Zoom using activities such as “a sing along, gentle movement with music, art and show & tell.”

Some libraries utilize the Tales & Travel program that uses oral reading and browsing through non-fiction books to stimulate memories and conversation. The program has pivoted to an online version called Tales & Travel Adventures with twelve YouTube “trips” freely available for use by anyone via a Creative Commons license.

LESSONS LEARNED
Libraries of all sizes and locations are taking on the challenge of serving this population head-on. Patricia Smith, Rowe Public Library, shares that their small rural library is sensitive to the needs of their community members and are preparing their staff for expanded services through watching dementia awareness training webinars. Glenna Godinsky, Gail Borden Public Library District, says, “Those living with dementia can enjoy being in the moment as well as anyone, and they enjoy a good laugh, a smile and a heartwarming thought.” Brooke Hansen, Effingham Public Library, reports, “Those with dementia are still able to enjoy things we may assume they can’t. This is why it is so important to have patience, pay attention and listen to what they are telling you.” Bari Ericson, Wheaton Public Library, says that she learned “patience, empathy and compassion.” She goes on to say, “These programs have been very fun to plan.” Speaking of those living with dementia, Jonathan Gaskill, Waukegan Public Library, says, “They are patrons too, and worthy of our service as any other member of our community…. It is an eye-opener which broadens our horizons to the possibilities.”

The possibilities for serving those living with dementia are indeed many. More libraries in Illinois beyond the twelve that responded to the survey already offer dementia programs and services and hopefully more will do so in the future. Many people living with dementia have been using libraries all their lives and are thrilled when the library continues to welcome them. Libraries can make a positive difference in their lives by ensuring that this deserving population is not forgotten.

REFERENCES
Alzheimer’s Association. (2021). 2021 Alzheimer’s Disease Facts and Figures. Retrieved from https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf

Dementia Friendly America. (2021). “What is DFA?”. Retrieved from https://www.dfamerica.org/what-is-dfa

Lepore, M., Ferrell, A., Wiener, J. M. (2017). Living arrangements of people with Alzheimer’s Disease and related dementias: Implications for services and supports. Retrieved from https://aspe.hhs.gov/system/files/pdf/257966/LivingArran.pdf

ACKNOWLEDGEMENTS 
We thank staff from the following libraries who completed the survey: Antioch Public Library, Deerfield Public Library, Effingham Public Library, Ela Area Public Library, Evanston Public Library, Gail Borden Public Library District, Lake Villa District Library, Orland Park Public Library, Robert W. Rowe Public Library District, Waukegan Public Library, Wheaton Public Library, Woodridge Public Library.

RESOURCES
Alzheimer’s Association, “What is Dementia?” https://www.alz.org/alzheimers-dementia/what-is-dementia

Alzheimer’s.gov https://www.alzheimers.gov/

Area Agencies on Aging (AAAs) for Illinois 
https://www2.illinois.gov/aging/forprofessionals/Pages/AreaAgenciesOnAging.aspx
– Age Guide Northeastern Illinois: https://ageguide.org/

Dementia Friendly America https://www.dfamerica.org/

Dementia Friendly Illinois https://ilbrainhealth.org/get-involved/dementia-friendly-illinois/
– Dementia Friends: https://ilbrainhealth.org/get-involved/dementia-friends-illinois/become-a-dementia-friend/
(contact Susan Frick at susan_frick@rush.edu to schedule a Zoom training session)

Effingham Area Alzheimer’s Awareness https://www.effinghamalz.org/
– Forget Me Not Resource Center - https://www.effinghamlibrary.org/forgetmenot/

International Federation of Library Associations, Guidelines for Library Services to Persons with Dementia
https://archive.ifla.org/VII/s9/nd1/Profrep104.pdf

Library Services for Dementia/Alzheimer’s Interest Group (formerly IGARD), ALA Office for Diversity, Literacy, and Outreach Services http://www.ala.org/aboutala/diversity/interest-groups

National Network of Libraries of Medicine (NNLM) “Dementia Awareness for Public Libraries” grant
https://nnlm.gov/class/dementia-awareness-public-libraries/24204
Free training webinars:
– “Kernel of Knowledge” from the NNLM: https://www.youtube.com/watch?v=kVNjCnNJ_xc
– “All of Us Dementia Awareness for Public Libraries,” to introduce NNLM resources: https://www.railslibraries.info/events/181734

Northwestern Medicine’s Mesulam Center for Cognitive Neurology and Alzheimer’s Disease https://www.brain.northwestern.edu/

RAILS Serving Patrons with Dementia Group https://www.railslibraries.info/community/groups/serving-patrons-dementia-group

Tales & Travel Adventures http://talesandtravelmemories.com/memory-cafes/

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