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Q: What makes this book different from other available resources on Alzheimer's disease?
A: This interactive activity book, intended to be used by a person with a cognitive impairment like Alzheimer's or dementia and his/her caregiver, has a very unique purpose: to develop and maintain an emotional or cognitive connection between the caregiver and the individual with Alzheimer's through meaningful activity. It is a renewable, open-ended, and failure-free tool that honors and respects the abilities and mood of each person at any given moment in time. Each element of the book, down to the color and placement of the pictures, was designed specifically to accomplish this purpose. It contains communication tips, background information on the strategy used, tips on how to use the book with groups, and research findings about the use of the book with individuals with Alzheimer's and other forms of dementia.
Q:
You emphasize that this book offers a "failure-free" activity for those with memory loss. What do
you mean by "failure-free" and why is it so important?
A: In our daily lives, if we fail frequently, we don't feel very good about ourselves and we may not develop the sense of mastery that each of us needs in order to feel competent. This feeling of competency helps us approach daily life with positive self-esteem and individual meaningfulness. Regardless of the presence of a cognitive disability, we as humans need to feel valued, appreciated, and competent. The term
"failure-free" means simply that there is no way that someone can fail by how he or she reacts or responds to each page in the book. Any response is valid. There is no storyline for the person to decipher and no text telling you what to see. It's okay if the image triggers a seemingly unrelated memory. The person owns the response in that very moment, and so, by nature, the response becomes correct. There can be no right or wrong.
Q: What is sensory integration and why did you use it as a basis for this book?
A: Sensory integration is a neurological developmental learning theory that describes the process by which the brain and the spinal cord (the central nervous system) take in information from the environment and then process the sensations for use in a meaningful way in daily activities and occupations. Sensory integration is when a person's brain is not working efficiently and effectively, it requires extra support.
It needs sensory cues in order to take in information and respond to it in a more organized and meaningful way. I chose both my subject matter and page layout to enable the individual to process the information on the page and react to it, despite the gaps that may exist in their central nervous system as a result of their cognitive impairment. For instance, during my research, I showed individuals with Alzheimer's a picture of a child covering his eyes. To myself and other individuals without a cognitive impairment, it was clear that the child was playing peek-aboo.
The individuals with Alzheimer's could see each element of the picture, such as the hands, hair, etc., but could not put all of those elements together to form an understanding of what the child was doing. It was not until I physically acted out "peek-a-boo" with them that some of them understood the message. For this reason, I knew I had to be very deliberate with the images I chose for the book. I had to be sure I was stimulating the reader's senses in a way that enabled them to process the information they were receiving.
Q: How does your book encourage meaningful interaction?
A: Physically sitting side-by-side with personal, one-on-one focused attention to the book's engaging photo subjects encourages the brain to react to and interact with another person (or seemingly at times with the image on the page). Language and conversation can then erupt spontaneously. As social beings, we respond to one another and an interaction can then flow naturally.
Q: What motivated you to write this book?
A: My mother was diagnosed with Alzheimer's and, as her communication abilities began to break down, I wanted to have something meaningful to do with her when I would make the 10-hour drive to visit her. I wanted something that would allow us to really "be together" in the moment.
As an occupational therapist and caregiver with experience working with those who have neurological brain disabilities, I knew that there was nothing on bookshelves, on-line, or at the local Alzheimer's Association office that I could use to meet this need. So I made this book (or, at least, a prototype of it). I compiled pictures from magazines and other printed material and bound them in book form. I purposely did not choose images of people or places that might be familiar to my mom so as not to set either of us up for sadness or failure should she be unable to recognize them. I then sat down with my mom and went through the book with her, discussing each image and her response.
It was brought to my attention that others, both professional and family members alike, had a need for a resource such as this, and I was encouraged to publish it!
Q: How did your professional background in occupational therapy help you shape this book?
A: My background in occupational therapy played a key role in the development of this book. The primary
goal of an occupational therapist is to create an activity in which a person with a disability can successfully
participate. In order to do this, an activity must be broken down into each of its various components or steps.
Once the steps are understood, the therapist can then alter different pieces of the activity to give the person a
chance at a successful outcome.
I approached the creation of this book in the same way. I started with my primary goal of creating a book that
fostered the development and maintenance of relationships and then modified the activity of looking at
images and stimulating the senses to reach that goal. I tapped into specific elements of my professional
knowledge, such as
- recognizing the importance of meaningful engagement in activity, and how activity can
empower the individual psychologically and physically.
- understanding how the individual needs to recalibrate a sense of self and well being in order
to adapt to a distressing situation; in particular, a situation in which the person has become
challenged both emotionally and physically.
- encouraging the mastery and positive reinforcement that come with an open-ended activity,
helping the individual with a disability to recover that sense of self and well being.
Q: How can this book be used?
A: Initially, it may be necessary to encourage the person to become interested in reading the book. You have to set aside quality time to sit with the person with whom you plan to use it. Create a space and place that is less distracting so that the person can pay better attention to both the photos and you.
Your mind and body must convey that you want to listen and pay attention to that person. The individual will know if you are really present for them. People will disengage if they feel you aren't "there."
Observe the person's reactions to each page and respond to these reactions. Be sure your responses fit where the person is and not where you want him/her to be! Use the person's cues to guide your interaction.
Finally, have fun with the activity! Be genuine and creative. Your authentic response will be felt by the individual and will allow an in-kind response.
Remember that one-on-one, personal attention makes any one of us feel special. We all "light up" when we think that someone wants to spend time listening and talking to us. This is especially important to someone with a cognitive impairment who so often feels disconnected by virtue of not being able to process what's going on.
Please note that this book can be used not only by individuals with Alzheimer's, but also by children with cognitive impairments such as autism.
Q: What kinds of questions can you ask when using the book?
A: You can ask many kinds of questions to engage the person with whom you are reading the book. They should be open ended so the person doesn't feel pressured to supply a correct answer. Here are just a few of the examples found in the book that encourage the individual to retain important cognitive skills:
- What do you see in this picture?
- What is happening in this picture?
- What colors do you see?
- Do you think that baby is soft or rough?
- That mother looks like she loves her child. What do you think?
- How is this child feeling?
Q: You talk a lot about using the book one-on-one, but you also say it can be used in groups. How?
A: The book might be used with any number of specific group goals in mind. For example: A speech therapist might use it to target the emergence of certain language or social skill interaction. The activity or recreational therapist might use it to encourage participation in fine motor, sensory, or daily life skill sets. Hospice workers, psychotherapists, or social workers might use it to support emotional process work. There are specific suggestions for group use located in the book's Users Guide that incorporate the inherent significance and power of music, drama, and play (in the form of a game) as core activities to encourage social, emotional, physical and cognitive skills.
Q: Why do the pictures appear with varying size and placement?
A: Individuals with cognitive impairment need extra help processing information, especially for communication purposes. To accomplish my goals for the book, the layout needed to encourage a response, whether it was verbal (saying, "Aren't they cute?"), vocal (like a sigh or cry), or physical (like pointing, turning a page, or simply smiling). The layout also needed to be uncluttered to diminish the chance for visual distraction. I purposely excluded words from the pages not only for this reason, but also to avoid presenting a "script" for the book, that suggests a right or wrong way to interpret the images.
When the eye must shift from page to page to find the subject and also to re-adjust to the photo size on the page, it keeps the individual stimulated. When images are placed in the same location and are the same size, it creates a sort of visual monotone. Each page is unique and interesting so that the person who normally cannot pay attention can become re-engaged on each page turn.
Q: Why do so many of the images in your book depict children?
A: Children tend to be universally loved and help get an adult's attention. Whether the viewer is male or female, there seems to be a hard-wired response in the brain to nurture and respond to a child's image. Also, the spontaneity of children engages adults fairly easily. We gravitate toward their life energy! Finally, children, and faces in general, have important neurological developmental significance - the triangle that is created by the eyes, nose, and mouth causes human infants to respond within a day of birth!
Q: Why can't you just use a children's picture book?
A: There are many reasons why a children's picture book cannot engage an adult with Alzheimer's in the same way as this book. The organization and strategic approach typically taken in a children's book is completely different. Pages with different subjects tend to be laid out side-by-side and often present an overload of visual stimuli to a person with cognitive impairment.
Children's books usually use words that tell a specific story. These words are mixed in with the images and the individual must be able to follow the flow of the story to understand them. They do not give the person with cognitive impairment the ability to interact and respond to each image in the moment.
With children's books, there is a right or wrong way to interpret them. Drawings rather than photos are more commonly used in children's books. Drawings do not evoke the strong emotional relationship and interaction that photographs do because they are not based in reality. Children's books vary in size.
Let's Look Together is large enough to be held by two people. This encourages a physical connection between the two participants that would not be possible if the book were smaller. The pages in Let's Look Together are made of a material that allows them to be wiped down should the person drool or spill on them, and are of a heavier weight and texture, allowing them to be turned more easily by a person with poor grasp or dexterity. Not all picture books, and in particular those books for older children, have pages like that.
Finally, children's books are written for children, who lack the knowledge and life experience of adults. A book for even a cognitively challenged adult needs to respect their adulthood and not talk down to them.
Q: There is a section at the back of the book that displays some data gathered about individuals with dementia using the book. What was the goal of the research and what did you discover?
A: The use of the prototype of the book worked with my mom successfully time after time - but I wanted to know whether it would work as well with other people who didn't know me. Would the different photographs on each page that my mom responded to have the same impact and effect on others? Would it work with men? For different stages in the disease process? With varying social and economic backgrounds? How would each person react to each page in a way unlike my mom? Would the theory of the book ultimately be useful for other family members and professionals? Would it guide them as they dealt with the unknown processing capability of each individual with dementia or Alzheimer's? Would the book really work?
I learned that specific poses worked in engaging an individual (no matter who they were) about 95% -100% of the time! In particular, I learned that the 'clutter' on the page did influence a person's ability to focus on, process, and use the information presented. Incredibly, even the orientation of the face in the photograph made a difference.
The research confirmed that race, gender, varying ages, and level of disability did not interfere with the primary purpose of the book - relationship and connection.
Q: How is the research data helpful to readers?
A: I know that it can be discouraging when you don't get the response you think you should from an individual with Alzheimer's. Many times I would be disappointed or saddened by my mother's response (or lack thereof) as we were going through the book together.
The research results validate the range of responses that any particular person might have when looking at the book. It can empower the family member or professional to know that any number of responses are valid and "okay." It can be a comforting source of information for the caregiver that their loved one is not alone.
Others with Alzheimer's responded in a similar way.
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