The facts are startling: More than 5.8 million older adults are living with dementia in the US. Most of them live at home, where more than 15 million family and friends provide unpaid care. Globally, 50 million people live with the degenerative cognitive disease—and new dementia diagnoses are made every three seconds.
At the June 25 ALA Virtual session “The Frontiers of Library Dementia Services,” three panelists shared what library workers can do to better serve people with dementia—and help them thrive.
The first step, said Timothy J. Dickey, adult services librarian at Columbus (Ohio) Metropolitan Libraries, is to learn more about dementia, which includes diseases such as Alzheimer’s. While there is no effective treatment, Dickey said, research has found nonpharmacological interventions that can help delay onset.
Those interventions include healthy lifestyle choices (diet, exercise, sleep, and stress reduction); mental stimulation (lifelong learning, reading, creative activities); and social stimulation (social networks, cultural connections).
How dementia presents “is highly individual to any given person,” Dickey said. “There’s no universal playbook to chart the development.”
Mary Beth Riedner, chair of ALA’s Interest Group for Alzheimer’s and Related Dementias (IGARD), recommended dementia awareness training for all library staff members—from trustees and administrators to front-line reference and circulation staff to tech services staff and even maintenance and security team members.
“As librarians, we know that the best way to counter stigma, stereotypes, and misconceptions is with knowledge and understanding,” Riedner said.
In the name of person-centered care, she suggested that library workers “tweak the standards” established in the ALA Reference and User Services Association’s Guidelines for Behavioral Performance of Reference and Information Service Providers. She offered the following tips for successfully interacting with patrons with dementia:
- Body language and tone of voice: smiling, making eye contact, referring to the patron by name, using a friendly tone that is not too loud
- Speaking: speaking at a slow and calm pace, allowing time for the patron to formulate a response, giving one instruction at a time, avoiding questions with “correct” answers
- Active listening: giving your full attention, accepting their reality, not correcting their factual mistakes, listening for emotional content
Riedner, who resigned as university librarian at Roosevelt University in Chicago in 2008 to care for her husband with young-onset dementia, said there are many commonly held misconceptions about people with disease.
One of those misperceptions is that people with dementia can’t read. Far from it. Riedner cited research from the University of South Florida showing that literate people maintain their ability to read until dementia’s end stages. Another study, from the University of Liverpool, suggests that reading group activities may significantly reduce dementia symptoms and enhance well-being.
Another myth: People with dementia aren’t functional. In fact, said Riedner, people in early and middle stages of dementia can remain highly functional. Instead of reading a bestselling novel, she said, they may now enjoy browsing through a book on a favorite hobby instead.
“A new definition for reading may need to be developed for those living with dementia,” she suggested.
Music and art
Like literacy activities, research has shown that creative expression such as musical and artistic activities can boost neuroplasticity and mental resilience, the panelists said.
“Interactions with music may actually be one of the most powerful kinds of mental stimulation, as music travels multiple different neural pathways, strengthening agility and resilience,” said Dickey.
Librarians can create an outreach program with music therapy groups—like the nonprofit Music & Memory, which works primarily in care facilities—and use music therapy in concerts or sing-along events.
Similarly, art therapy can counter depression and behavioral issues and connect a person to their past life.
The panelists suggested turning to museum programs designed to spark conversations for those living with dementia or cognitive impairments. These programs have specially trained docents who lead dementia-friendly tours, usually looking at two to three works of art on a large canvas. Said Dickey: “The intent is not educational or informational; the intent is to spark conversations with caregivers.”
Looking to the future, the panelist advised library workers to consider creating resources for brain health as well as meditation activities and programming for older adults.
Started in Holland in 1997 and introduced in the US around 10 years ago, memory cafés are used to decrease social isolation, said Marie Ingram, older adult services librarian at Arapahoe Libraries in Centennial, Colorado.
Ingram has hosted these cafés for two years “to spark joy, creativity, and connection.” At her library, the memory café is typically an hour-and-a-half long and held twice a month. It’s meant to serve both the person living with dementia and their loved ones. To make it welcoming, Ingram and her colleagues offer refreshments, sit in a circle, make introductions, and share something that made them smile recently. They then lead an activity, wrapping it up with a brief chat.
“The real frontier of memory cafés right now is virtual memory cafés,” said Ingram, which have been popping up since the COVID-19 pandemic started.
Said Ingram: “A lot of this is trying something and not being afraid for it to flop.”
Training and Other Resources:
Library Dementia Services (Emerald, 2020)