Public Libraries and the Dementia/Alzheimer’s Community
The dementia community is larger than you might imagine:
- Within the United States, more than 6 million people are living with dementia.
- These numbers are expected to rise dramatically as life expectancy increases and as the greater impacts of COVID-related dementias are felt.
- There are 15 million friends, family members, and caregivers to people with dementia.
The question, then, is not will you serve this community, but will you serve it well? Does your staff understand the behaviors they encounter? Are they welcoming to this vulnerable group? Do they feel empowered to provide services and programs that improve quality of life?
Contrary to the current cultural narrative, people with dementia can lead lives filled with love, meaning, connection, and even growth – if they are given the support and community to do so.
Public libraries are perfectly positioned to serve people with dementia and give them the support and resources they need. Public libraries are embedded in almost every American community, offering a unique opportunity to welcome and engage the 81% of people who have dementia who are still living at home, as well as the people who care for and about them. Libraries can also actively serve and enrich the experiences of people living in memory care and other facilities. There are no barriers to access in libraries, and no stigma to walking through our doors.
One way to ensure this happens in your library is to practice an emerging gold standard for dementia care called person centered care. First promulgated by Dr. Thomas Kitwood in the 1990’s, it has now become accepted practice. The Alzheimer’s Society in the UK provides these 5 recommended guidelines:
- Treat the person with dignity and respect
- Understand their history, lifestyle, culture and preferences, including their likes, dislikes, hobbies and interests
- Look at situations from the point of view of the person with dementia
- Provide opportunities for the person to have conversations and relationships with other people
- Ensure the person has the chance to try new things or take part in activities they enjoy.
Libraries can design programming and provide individualized Reader’s Advisory services for their patrons living with dementia that demonstrate person-centered care in action. Samples of programs and draft reader’s advisory forms can be found below under resources.
Libraries across the nation are also becoming involved in the Dementia Friendly America movement and are starting to either offer Memory Cafes in house or bring book and reading programming to already existing Memory Cafes. Again, more resources can be found below.
Another stigmatizing misconception is that people living with dementia can no longer enjoy books and reading. However, research, and anecdotal experience of librarians across the country, demonstrate just the opposite. While reading may be different for those living with dementia, they can still benefit from carefully selected materials from both the adult and children’s non-fiction collections. Please see some corroborating journal articles in the Reading & Dementia section below.
Libraries should never forget their patrons with memory loss. We hope these ideas and resources will help to enable you to start bringing library services to this deserving, but often underserved, segment of you community.
Please feel free to join LSDA (there are no fees) by going to our LS4DA Google Group, our LS4DA Facebook page, or the LSDA community via ALA Connect. These are forums to exchange information, provide training, and give each other support on the journey of serving the dementia community.
Recommended Resources
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Background information on Dementia (definitions, demographics, communication tips, etc.)
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Library’s Role
- LSDA
- LS4DA Google Group
- LS4DA Facebook Page
- LSDA Listserv
- ALA Connect – log in and search for LSDA Community
- Dementia Friendly America
- Library Sector Guide (PDF)
- Dementia Inclusive Public Library Guide from the Ohio Council for Cognitive Heath (2023)
- IFLA’s Guidelines for Library Services to Persons with Dementia (2007) (PDF)
- Library Memory Project
- Southern Tier Library System (NY) Library Services for Dementia
- LSDA
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Reader's Advisory Tool
- Sample Survey form to share with patrons or care partners to help determine areas of interest
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Staff Training
- Engaging People Living with Dementia with Library Materials (2022) - LSDA Webinar
- NNLM Webinar – Dementia Awareness for Public Libraries (2021)
- NNLM webinar Libraries and Dementia Services (2020)
- Remember Your Patrons Living with Memory Loss (2022) - WebJunction webinar
- RUSA Guidelines for Behavioral Performance of Reference and Information Service Providers
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Programming Ideas for People Living With Dementia
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Memory Cafes
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Research on Reading and Dementia
- Benigas, J. and Bourgeois, M. (2011). Evaluating oral reading and reading comprehension in patients with dementia: A comparison of generic and personally relevant stimuli. Non-pharmacological Therapies in Dementia, 2(1): 41-54.
- Billington, J. (2013). A literature-based intervention for older people living with dementia. Perspectives in Public Health 133(3):165-73.
- Bourgeois, M. (2001) Is reading preserved in dementia? The ASHA Leader.
- Claridge, G. and Rimkeit, S. (2018). Can she still read? How some people living with dementia responded to the reading experience. Extensive Reading World Congress, 4, 266-275.
- Dai, J. et al. (2021). Library services enriching community engagement for dementia care: The Tales & Travels Program at a Canadian Public Library as a case study. Journal of Librarianship and Information Science.
- DeVries, D. et al. (2019). The impact of reading groups on engagement and social interaction for older adults with dementia: A literature review. Therapeutic Recreation Journal. 53(1): 53-75.
- Dickey, Timothy (2020). Library Dementia Services: How to Meet the Needs of the Alzheimer's Community, Emerald Publishing Limited, 2020, ISBN 978-1838676940.
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- Freudenheim, Milt. “Many Alzheimer’s Patients Find Comfort in Books”. NYTimes.com. April 22, 2010.
- Freund, Linda. Reading Improves Memory and Helps Prevent Dementia. Being Patient, May 13, 2019.
- McNicol, Sarah (2023). Supporting People to Live Well with Dementia: A Guide for Library Services, Facet Publishing, 2023, ISBN 978-1783305971
- Rimkeit, S. and Claridge, G. (2017). Literary Alzheimer’s, A qualitative feasibility study of dementia-friendly book groups. New Zealand Library & Information Management Journal. 56(2):14-22.
- Wilson, R., et al. (2021). Cognitive activity and onset age of incident Alzheimer Disease dementia. Neurology, 97:e922-e929.