Read with people with moderate to advanced dementia
The idea: Many people in the later stages of dementia can still read -- they just need the information presented in a manageable format and the rest of us need to expand our definition of what reading is.
My name is Laura and I live in Canada. My mother had vascular dementia and passed away in 2008.
One thing I discovered with my mother -- almost too late mind you -- was that she could read even though she was in an advanced stage of dementia. While she had once been an avid reader, she had clearly indicated that she didn't want to read books or magazines and so we gave up on those. We figured that she found the endless words too confusing. However, she could still read greeting cards.
One day while I was visiting her, I picked up a coffee table book full of photos of day-to-day life in the town in which she had lived for the last 20 years. I opened it to the first picture, sat down beside her, and went through the book page by page, making up words as I went. We stopped to talk about a picture that seemed to capture her imagination. We spent some very pleasant time in unforced, interesting conversation, and at the end of the book, my mother said, "AGAIN!"
So I got to thinking, what if I married greeting card-like text with photos and made them into a book that my mother could read? Having been a writer, editor and graphic designer for many years, creating a book was a natural way for me to go. So I created a prototype of a short, colourful book, with one large photo per page showing scenes from everyday life -- life on the outside of her memory care unit, life that she used to enjoy -- shopping, cooking, parties, dancing, children playing, sports. Under each photo I typed a few sentences of text in a large font, a little story about the photo. At the bottom of the page I included trigger questions that could be used to start a conversation -- for the caregiver too weary to think of things to talk about. I left the facing page blank so that my mother wouldn't be confused about which page we were looking at.
My mother and I enjoyed a good couple of hours going through the six pages of that book. And she read. She read every single word on every page. And she had something to say about every photo. And this has been my experience with pretty much every person that I've sat down and read this book with.
The "Life Scenes" book became 12 pages and I self-published it. It's available at mindsetmemory.com or on Amazon.com. I named the series "Eldercareread" but soon after I learned about early onset Alzheimer's and that dementia is not only a senior problem. While the book had already been printed, the Mindset Memory name will be used on any future books!
Books such as mine that are targeted at people who might have issues with comprehending large chunks of information are helpful when reading with someone with moderate to advanced dementia, but you can just as easily use a coffee table book and just talk about the photos, or collect greeting cards and read the text on those, or create your own book in Word with large bright photos and a few simple sentences underneath. I recommend against using preschool books because the topic matter is directed at preschoolers, and it just feels weird for both parties.
Regardless of what you choose to read, here is what I've found to be true over the past few years of reading with people with dementia:
- As a care partner or volunteer or other family member reading with a person with dementia, you need to expand your idea of "reading." Reading can include just talking about a photo. Don't force a person to read if they clearly can't or aren't interested. Don't force them to start at the beginning of a paragraph. I included words in a really large font and a different colour at random places in the paragraph to use as reference points for where to start reading. Reading can start anywhere on a page.
- You will get involved in conversations sparked by the photos and words on a page, and these conversations will transport you and your reading partner to another place in time, and it's wonderful!
- The person with dementia might surprise you and read most of the words. Be prepared to be surprised.
- Start with something that has few words on a page. If that is too easy, move up to something with more words. Don't start with a magazine or something with a lot of dense text that might frustrate the reader (and you).
- Reading a book is a great chance to engage in the one-on-one interaction essential to a person with dementia's well-being.
- Reading requires no training on the caregiver's or volunteers part. Everyone understands how to read a book. Reading is universal.
- Reading is a terrific way for grandchildren to interact with their grandparents who have dementia. I'd like to see youth groups come in to memory care units and read with the residents!
- Reading can also be used with groups, but I recommend small groups (5 people for example). I've recommended that people tear the pages out of a book (even my book!), laminate them, and hand out a page to each group participant to read out loud or just describe the photo and make up a story. This is a good exercise for people with moderate dementia.
- Just as with other forms of therapy (art, music and pet therapy for example), you may find that the person with dementia is more engaged in life for a period of time that extends past the end of the book. The one-on-one interaction, the socialization, the fun, the conversation, the thinking, all serve as stimulation for the person in the advanced stages of dementia.
Please consider giving reading a try. Reading is a great organized activity in a memory care home. Books can also just be left around for residents to pick up and peruse. Reading is also a good activity for home care givers, and can be part of any activity toolkit.