Caring for Individuals with Dementia

Caring for a loved one diagnosed with Alzheimer’s Disease or another form of dementia poses many challenges for families, individuals, and caregivers. According to the Family Caregiver Alliance, “People diagnosed with dementia brought on by Alzheimer’s and related diseases have a progressive brain disorder that makes it difficult to remember things, think clearly, communicate with others, or take care of themselves. In addition, dementia can cause mood swings or even change a person’s personality or behavior.”

The Family Caregiver Alliance provides guidance for communicating with a person with dementia, handling challenging behavior, and other issues symptomatic of Alzheimer’s or other dementias.

Comments from Mary Beth Riedner,
Caregiver, Retired Librarian, and Creator of the Tales & Travel Program

Caregivers of persons living with Alzheimer’s and other dementias are always looking for meaningful activities to help stimulate, engage and entertain their loved ones.  One community resource that is sometimes overlooked is your public library.  Many caregivers already know that libraries provide support to them in the form of information about the disease and caregiving techniques.  It is less well known that libraries can do much to directly improve the quality of life for diagnosed persons.

My late husband Steve was diagnosed with a young-onset dementia called Primary Progressive Aphasia or PPA in 2006.  Having been intimately immersed in the life of one person with dementia as the disease progressed as well as working with a significant number of people living with dementia during my volunteer programs, I have to tell you I have nothing but respect for their courage and their determination to continue living their lives and to retain their identity for as long as possible.   Even when they can no longer express themselves in words and even body language, that spark of life still remains inside them (I’ve seen it!) and they deserve (as we all do!) to be treated with the utmost dignity and respect.

It is my belief that librarians can take a page from the efforts of other professionals such as music and art therapists who use their specialties to help improve the quality of life for people with dementia.  You have probably run across stories on television or in the newspaper about how drama therapy or nature therapy, pet therapy, have brought joy to people diagnosed with dementia.  The medical community call these non-pharmacological interventions.  Why not add books and reading to this list?

How to go about choosing materials for use with persons with dementia?  You might want to make an appointment with a librarian at your public library to discuss finding appropriate materials for your loved one.  In the meantime, here are a few tips that might help.  Non-fiction books that are richly illustrated with color photographs have proven to be the most successful.  They can be chosen from either the adult or the children’s collections as long as they preserve the dignity of these adult users.  As a former children’s librarian, I have a lot of respect for books written for children.  If you ever want a clear concise synopsis of a topic, pick up a children’s book on the subject.  If you haven’t ever done that, I am sure you will be amazed.

Another tip to remember is that each person is a unique individual with their own personal history and interests.  It is helpful to personalize the types of materials offered.  For example, my husband was interested in motorcycles, home repair, the Old West and, as a Vietnam veteran, in books about that war and time period.  Other people might have a special interest in sports, gardening, old cars, home decorating or just about any topic you can think of.  At Christmas time one year, I remember giving a book on golf as a gift to one of the gentlemen at the facility where I first started Tales & Travel.  He literally hugged it to him and took it to his room so that no one could take it from him.  As you might guess, he used to be an avid golfer.

Finally, it is appropriate to base the choice of materials on the person’s current abilities.  Unfortunately, as dementia progresses, people continually lose abilities.  Therefore, it might be wise to offer them materials best suited to where they currently are.  Shorter books, with more white space and simpler vocabulary found in the children’s collection might be more appropriate as people enter the later stages.  It is still important to maintain their dignity as adults and make wise choices from the children’s collection.

You, as your loved one’s primary caregiver, are in the best position to choose meaningful activities to improve their quality of life (and yours too as a result of their improved mood!).  You are also your loved one’s primary advocate.  Feel free to direct your public library staff to the “For Librarians” tab on this website for a tool kit that librarians can freely use to replicate the Tales & Travel program.

Mary Beth Riedner
April 11, 2016

Another good source for information is Tryn Rose Seley’s Caregiver Heart . Focused on caregivers, the website features blog posts, tips for caring for loved ones with dementia, and Seley’s book, 15 Minutes of Fame, provides simple tips for caring for loved ones with Alzheimer’s Disease and other dementias. 15 Minutes of Fame is available through Caregiver Heart.