The month of November usually makes me think of the upcoming holiday season, spending time with family and friends, and enjoying the beautiful Pennsylvania autumn. After recently attending an eye-opening session at the Pennsylvania Library Association’s Annual Conference: “Just Forgetfulness? Or Is It?”, (presented by Jeffrey Dauber, Education and Outreach Coordinator of the Alzheimer’s Association- Greater Pennsylvania Chapter), November now also reminds me of National Alzheimer’s Disease Awareness Month. Additionally, November is also National Family Caregivers Month.
If you’re like me, you may be thinking that you’ve of course heard about this incurable disease, but you might not know a lot about it. The Alzheimer’s Association website offers a great overview of the types of dementia, along with an incredible number of other resources. This too-common disease (the most common form of dementia) affects so many that most know someone diagnosed with Alzheimer’s Disease- from close relatives to public figures. In fact, it stands as the 6th leading cause of death in the U.S. This disease is a type of dementia, which is not itself a disease, but, as alz.org states: “a general term for loss of memory and other mental abilities severe enough to interfere with daily life.” This progressive brain disease develops slowly, beginning well before any symptoms appear. Alzheimer’s Disease is caused when plaques (deposits of the protein fragment beta-amyloid) and tangles (twisted strands of the protein tau) cause various symptoms as they affect areas of the brain. Scientists know that Alzheimer’s Disease is marked by progressive brain cell failure, but they have not determined why. It seems likely that the disease is caused by many factors, rather than one.
Early clinical symptoms include depression, apathy, and difficulty remembering recent conversations, names, and events. Later symptoms may lead to difficulty communicating, walking, and swallowing; disorientation and confusion, behavior changes, and poor judgment. Currently, there is no cure for Alzheimer’s Disease, and diagnosis is not simple. Contrary to popular belief, there is no one test to help diagnose Alzheimer’s, rather a doctor (and often other specialists, too) must collect a detailed medical history, conduct physical and laboratory tests, and consider changes in daily functioning and behavior. The Alzheimer’s Association does not support relying on just memory screening- Dauber explained that these tests can lead to a misleading interpretation of one’s health- either of “I’m okay,” or “I’m not okay,” when the screening alone doesn’t show the full picture. Additionally, several conditions can mimic dementia- from medicine interactions, urinary tract infections, and chronic depression.
Dauber explained that currently, 5.3 million Americans have been diagnosed- 95% of those are aged 65+, while 5% have early-onset Alzheimer’s (often ages 40-60). Nearly two-thirds of those are women. In Pennsylvania alone, 270,000 people aged 65+ have been diagnosed with Alzheimer’s, with an estimated increase of 18.5% by 2025. Many of us who work in public libraries serve communities that almost certainly include those with Alzheimer’s, their families and friends, and their caregivers- highlighting the importance of awareness of this disease. The impact of the disease goes far beyond the individual afflicted. With estimates of the number of those diagnosed increasing rapidly in coming years as the baby boom generation ages- to as many as 13-16 million by 2050– Dauber explained the importance of educating all ages about Alzheimer’s and its effect on the health care system, the economy, communities, and families.
He presents in high schools and universities, asking students: “What does Alzheimer’s mean to me? How will it affect my life? Has it already affected me?” Increasing awareness of the disease and the likelihood that Alzheimer’s will impact one’s life helps students envision what may be needed to help face this disease- from encouraging more students to enter the fields of gerontology and medical care, to considering the necessary preparations that can be difficult to think about, like planning a living will and advance medical directives.
Dauber also described the increasing number of adults now part of the “sandwich generation:” those who are simultaneously caring for their children and their parents, often while also working outside the home- a condition that is likely to impact even greater numbers as medical advancements lead to higher lifespans and parents choose to have children at a later age. Even if an adult child of a parent with Alzheimer’s is equipped to care for them, the financial impact can be overwhelming- currently those costs run about $236 billion per year in the United States.
How can we use this information to better serve those affected by Alzheimer’s in the library? Helping our patrons find what they need is at the core of our work as public library staff. In this respect, respectful communication is key. Educating ourselves about how to best communicate with those who have Alzheimer’s and other dementia-related diagnoses is key. Dauber reminded us that communication is often nonverbal. Even if your customer cannot communicate easily, in a traditional manner, or at all- your welcoming presence and open manner sends an important message. Dauber described how introducing yourself, maintaining a calm tone of voice- speaking simply and more slowly, avoiding quick movements, and not looming over the person can increase your customer’s comfort in the interaction. Avoid “quizzing” but instead use “yes or no” questions. Including possible answers in your question and using visual cues like writing information down, pointing, gesturing can also be helpful. Repeated in many resource documents is advice to “join their reality-” instead of challenging or arguing with a statement that seems outlandish or clearly untrue, you can validate their reality and then try to redirect. Dauber gave an example of someone telling you they just saw aliens grilling hot dogs in the parking lot. Instead of disagreeing, a helpful response that both validates and redirects would be something like “Oh, how about that! Let’s find you this book and then we’ll get one later!” Even though you might not know the customer well, or at all- we can still offer respect, safety, and comfort through actions like these. The Alzheimer’s Association website offers even more communication tips and information.
Hosting programs led by educators and professionals like those at the Alzheimer’s Association and other similar organizations and agencies can help your community learn the difference between normal aging and signs of dementia. Dauber explained how often signs of this disease can be missed, describing how family members might think dementia symptoms are simply a normal sign of aging: “he’s just getting old,” or even that the afflicted is “faking.” He described that even professional caregivers can miss signs of different types of dementia by chalking up worrisome behavior to interpersonal problems: “maybe she just doesn’t like me, that’s why she’s acting this way.” Publicizing the many free educational resources organizations like the Alzheimer’s Association make available is another way libraries can increase knowledge of this disease in their community.
Bringing the library to those with Alzheimer’s or other forms of dementia is also an option. Several libraries around the country have developed ways to serve those with Alzheimer’s, even in later stages. Dauber noted that the emotional centers of the brain often remain intact, even among those with late-stage dementia. He described how music they’ve loved can especially positively affect them- pointing to a number of videos on Youtube showing the awesome changes caused by hearing their favorite songs. In one incredible video from the Music & Memory iPod Project, Dr. Oliver Sacks describes how Henry, who experiences dementia symptoms, and spoke very little in the last decade, undergoes an amazing change after listening to “his” music: “he has remembered who he is, and he has re-acquired his identity for a while- through the power of music.” Pursuing a partnership with memory-care facilities can help libraries reach these underserved populations to encourage such activities. Delivering a selection of CDs, books, and films in varied genres and from different eras on a regular basis can provide those diagnosed with Alzheimer’s a way to take advantage of library offerings, even if they cannot physically visit the building itself. Even if an individual’s reading ability is decreasing, they still may be able to enjoy juvenile titles, or even being read to. Libraries often have many volunteers, with varied skills and life experiences. The library could serve as a connector between facilities that would like to offer similar programs, and volunteers of all ages who are interested in helping. This sort of partnership could also provide an added benefit of giving those volunteers and library staff the opportunity to learn more about this common disease, and consider how to serve this population.
Tracey Degnan, life enrichment liaison at Gail Borden Public Library in Elgin, Illinois, manages an outreach service, “Tales and Travels Memory Programs” that she and several volunteers bring to assisted living and memory care facilities to spark conversation with Alzheimer’s and dementia patients by “travelling” to faraway places through imaginary trips. The program was created by Mary Beth Riedner, a retired librarian- her husband’s early-onset Alzheimer’s diagnosis inspired her to create this program which encourages reading comprehension, verbal skills, social interaction, and more. The program managers have even provided a toolkit for librarians, so others can easily duplicate these programs themselves. The Library Memory Project, a partnership between the public libraries of Waukesha and Milwaukee Counties in Wisconsin, provides a variety of programs to those affected by early stages of dementia and their caregivers. The group regularly holds “Memory Cafes”, monthly social events that feature a variety of activities- from concerts and crafting, to a “petting zoo” with visits from the local Humane Society.
Preventative measures are also valuable. Libraries can help educate their community by inviting speakers to present programs highlighting means of prevention. There are many ways to reduce one’s risk of developing Alzheimer’s. Engaging in activities to stay cognitively active is important- from working and reading, to playing mind games and puzzles. Perhaps you’re thinking you don’t have the staff or time to engage in more elaborate, formal programs? You’re probably already offering programs and services that help your patrons exercise their brains (in addition to great collections of reading materials!) It can be as simple as offering a passive program like a rotating selection of puzzles, or developing and hosting Bridge group, as my library (Henrietta Hankin Branch Library) does- helping to lead to “exercised brains!” Another method to reduce one’s risk of the disease is by ensuring physical brain health- as Dauber explained, brain health is heart health. The brain can’t operate well without healthy blood reaching it. The whole of your physical health leads to good brain health. Publicizing that your health literacy programs like nutrition and exercise classes support healthy brains and reduce Alzheimer’s risk drives home this fact. Finally, maintaining a social network is very important in the reduction of risk. Libraries everywhere already support this preventative measure simply by existing, and inviting community members to a place to interact with others, attend programs, and engage in their world.
Offering library space to host support and other types of groups for those affected by Alzheimer’s is also a valuable service- the library is seen as a neutral location that many already feel comfortable visiting. Both Dauber and Sara Murphy, Senior Constituent Services Manager, Alzheimer’s Association- Greater Pennsylvania Chapter, expressed their organization’s willingness to partner with public libraries in this way. Dauber made clear: “our chapter is very interested in partnering with libraries to host events and groups for Caregivers and for Early Stage memory groups.” Libraries can not only host, but help publicize these groups, promoting them in their internal and external advertising. Support groups can benefit anyone affected by the disease- whether a caregiver, family member, or the individual with the diagnosis. According to alz.org, in 2015, more than 15 million caregivers provided more than 18.1 billion hours of unpaid care. According to the Alzheimer’s Disease Education and Referral Center, “it is well established that Alzheimer’s Disease (AD) caregivers often experience stress, anxiety, depression, and other mental health problems as a result of the continuing and demanding nature of AD care” with emotional and physical effects even lasting after the passing of the cared-for. The importance of having a space to share and find support about both the difficult and positive aspects of caregiving cannot be overstated.
Sharing information, as well as support, is another important aspect of these groups. To this end, bringing these groups to the library will give them the opportunity to access helpful information and resources. We all know how difficult it can be to sort through information on the Internet- discerning which sources are trustworthy and reputable is yet another challenge those trying to learn about Alzheimer’s disease may face. Libraries can help by reviewing, collecting, and disseminating credible, authoritative information and resources to their community.
Alzheimer’s Disease can be a difficult topic to address. I think it’s fair to say that most don’t want to consider the possibility that they or a loved one could face this progressive disease, but unfortunately the statistics prove otherwise. Until researchers discover a cure and eradicate this disease, we can continue to support those afflicted by sharing information, providing education, and supporting one another. Libraries everywhere are certainly capable of accomplishing these aims- in fact, you will likely find that your library already does!
ALA resources: Review best practices, established library programs and services, conference presentations, and more
ALZ.org: Alzheimer’s Association: community resource finder, caregiver center, safety information, latest research, message boards, how to help
Alzheimer’s Association: Building & running a small resource center: A toolkit
Alzheimer’s Disease Science Tracer Bullet 97-7: Comprehensive resource guide from the Library of Congress
Caregiving and Quality of Care Resources: compiled by WHYY
Chester County: Aging Services
Eldercare Locator: Service of the U. S. Administration on Aging
Healthy Aging Data: Centers for Disease Control and Prevention
Mayo Clinic: Alzheimer’s Disease information
Medline Plus: Dementia information
Merck Manual of Geriatrics: Free, comprehensive, continually updated guide about the care of older people
National Institute on Aging: National Institutes of Health
Penn Memory Center (A National Institute on Aging-designated Alzheimer’s Disease Center): Resources
Report Elder Abuse: Pennsylvania’s 24/7 Hotline: 1-800-490-8505
“Stimulating Minds”: American Libraries article, February 9, 2015
Training.ALZ.org: Free online educational programs
1-800-272-3900: Alzheimer’s Association’s free, 24/7 Help Line