Library Services for People with Memory Loss, Dementia, and Alzheimers

Earlier this year I organized a training for library staff throughout our county from the local chapter of the Alzheimer’s Association and a stellar local senior non-profit named Senior Access dedicated to serving residents with memory loss issues. This training was inspired by two things: in my year in the San Rafael Leadership Institute our class project was raising funds for Senior Access – and a demographic study from the Association of Bay Area Governments that highlighted Marin County’s median age compared to regional, state, and national norms. In 2013, the median age was:

  • 37.5 in the United States
  • 35.7 in California
  • 45.5 in Marin County

Basically, where I live and work to provide library services, our population is ten years ahead in terms of age. As a result, library services here are slightly different to meet the needs of this older population. A significant part of serving this older population is seeing an increase in various memory disorders (Alzheimer’s, vascular dementia, Lewy body disease, Frontotemporal dementia) among our neighbors and library users. Thus, the training.

Libraries are uniquely positioned to see changes in our regular users. We have people who come in all the time, and we can see changes in their behavior, mood, and appearance that others who see them less often would never recognize. Likewise, libraries and librarians are trusted entities–you may have people being more open and letting their guard down with you in a way that lets you observe what’s happening to them more directly. Finally, people who work in libraries generally really care a lot about other people–and that in-built sensitivity and care can help when seeing a change in someone’s mental health and abilities.

I’m going to do my best to sum up what I learned at the training as well as what we’ve seen here in our Library serving older adults with memory issues. I hope some of this can help you at your library too.

How do memory disorders usually make themselves visible?

As each of us ages, our memories get less and less reliable. Typical changes can include forgetting an occasional appointment or bill due date, forgetting words, and losing things. Changes that indicate something more progressed is happening in someone’s mind include disruptions to daily life, changes in personality, withdrawal from work or friends, poor judgment, misplacing things frequently, difficulty solving problems, confusion  about when and where you are, and trouble with spatial relationships or speaking and writing.

How might these memory disorders present in a library environment?

People will think they are in another library, another city, or another time period. They may confuse library staff for a relative of theirs. They may become upset, not remembering how they got to the library. They may repeatedly come to the library on the wrong day for an event. They may tell staff that their library card must have been stolen because they don’t remember checking out the items on their account. They may become angry and frustrated when you present them with the “correct” information. They may need to be shown the same basic procedures repeatedly, always as if for the first time. They may become uncharacteristically verbally abusive to staff or other library users when frustrated. They may pace or wander seemingly at random. They may repeatedly ask the same questions during the same short window of time. They may look and behave completely normal. One never knows for sure.

What are people with memory disorders experiencing?

Overall, in any stage of memory decline, people experience confusion, and then a resulting discomfort or uneasiness, which usually leads to an uncharacteristic behavior. Some people withdraw while others lash out. Most people experience severe fear during the latter stages of their memory loss, which makes sense if you think about it. How scary would it be to wake up with a functionally blank slate and try to “appear normal” to everyone as you go through your day? Showing up at a job that you haven’t had for 10 years, looking for a car that you don’t have any more, expecting to see a 22 year old friend who’s somehow now looking like she’s 62. How people with memory disorders behave has a lot to do with their personalities, as well as how the disease has progressed.

What is the most important thing to do when working with someone with a memory disorder?

Focus on communication. Be a good listener by expressing interest, being patient, and not interrupting. Use body language effectively by making eye contact, using a calm voice, and using gestures. Be mindful of the environment by moving to a quiet place, reducing distractions, and moving away from potential onlookers. Aim for simplicity by giving simple instructions one at a time, asking simple questions one at a time, and being mindful of the pace of your speech.

Communicating with someone with an impacted memory can be very frustrating. What should I do and not do?

Do: allow plenty of time for comprehension, repeat instructions using exactly the same words, agree with them even if what they’re saying is false, accept the blame when they feel something is wrong, be patient and cheerful, and forgive.

Don’t: reason, argue, remind them that they keep forgetting things, question their memory, or take it personally.

What should I do if I repeatedly see an adult alone in the library who seems to have some kind of memory disorder and who cannot take care of himself or herself?

If you can contact a family member or caregiver, do that first. Oftentimes our integrated library system databases have the capacity to add a second name to someone’s account or a note in the record to call a caregiver if there’s a problem. If you cannot find a family member or caregiver, call Adult Protective Services (here’s California’s APS website) or whatever the local agency equivalent is for you. It may feel like tattling or ratting someone out, but just as we would contact Child Protective Services if we feared for a child’s safety and well-being, so we should do for adults who have a diminished capacity to take care of themselves. It’s never fun, but these folks handle cases like this all day and approach their work with sensitivity, care, and kindness. Let them do their jobs.

What can I do in my library to support a community of people with memory issues?

Offer free and conveniently timed classes on memory retention, communication strategies, living with dementia, signs of memory loss. Local non-profits can definitely provide the expert trainers for these classes. Offer to be a site for a support group. Keep a handy resource list of local non-profits and governmental resources for people with memory disorders: adult day cares, advocacy groups, residential facilities, caregiver support, diagnosis programs, in-home care, legal and financial information, meal programs, and transportation options. Train your staff on the warning signs to look for and how to effectively communicate with people with memory issues. Collaborate with local non-profits on art programs, day field trips, and other activities to keep people with memory disorders active and engaged in their communities.

Resources

For more information, check out the Alzheimer’s Association website: look for a local chapter, resources for family care, caregiver support groups, classes, day programs, and training. And in a pinch you can definitely call the Alzheimer’s Association National Hotline: 1-800-272-3900.

Editor’s Note – this article is republished with the permission of the author from her site Librarian in Black.

Posted in: Education, Healthcare, KM, Libraries & Librarians