Book Review: Unique book offers a refreshing look at young onset Alzheimer’s Disease
Tangles: A Story about Alzheimer’s, my Mother and Me” by Sarah Leavitt has an unconventional format for such a serious topic. It’s a comic, which I think is its greatest asset. It takes a very difficult topic to digest and read about and breaks it down into bite-size pieces. The story is based on the author’s mother’s life with young onset Alzheimer’s disease.
What makes the book unique is the combination of drawings and written word. Reading through the book, I easily identified with the emotions on the characters’ faces and equally recognized the description of the progression of Alzheimer’s disease. The book has three parts; each one representing the illness at different stages. It tackles many different topics from family conflict, long-distance caregiving, grieving, loss, denial, etc. This book would be an excellent resource for anyone caring for someone with dementia; however, I think young adults would highly benefit from the format when struggling with a parent with young onset Alzheimer’s disease or dementia.
Early-onset dementia is used for people who develop dementia under the age of 65 and it affects one in every 1,000 people under the age of 65 years. The most common form of early onset dementia is Alzheimer’s disease followed by frontotemporal dementia.
Reading through the book reminded me of my Grade 7 and 8 home economics teacher, Mrs. Richards. A generous, kind and smart women, her patience for working with kids in mastering life skills still astounds me. When I accidentally perforated my finger nail with the sewing machine needle for the 5th time, she didn’t dissuade me in the least. She simply bandaged me up (again) and said, “Let’s move on to a different project now.”
Over the years, Mom would speak about her colleague and friend with a great deal of concern of memory loss, behaviour changes and denial on the part of the family. Eventually, there was a diagnosis of Alzheimer’s disease. Mrs. Richards was in her late fifties. In the case of Mrs. Richards, getting a diagnosis was difficult. There was a great deal of denial on the family’s part and for them, the initial diagnosis was depression.
My Mom noticed it most when they went out for their weekly movie night. Mrs. Richards had difficulty ordering food, would become quickly agitated if the conversation wasn’t easy to follow and her ability to sit through a movie became next to impossible. My Mom also noticed she was quick to anger when she corrected her behaviour.
Young onset Alzheimer’s affects the entire family. In Mrs. Richards’ case, her adult children were raising young children at the time and working full time, limiting their ability to help with the day-to-day care. It also affected her husband’s ability to work. Mrs. Richards’ behaviour markedly changed
Some great resources for family caregivers and individuals affected by young
Young onset dementia – http://www.alzheimer.ca/en/About-dementia/Dementias/young-onset-dementia
Early Onset Dementia: A Guide for Caregivers – http://www.nicenet.ca/files/EOD_Tool_Caregivers.pdf
When Dementia is in the House is directed at teens living with a parent with young onset – http://lifeandminds.ca/whendementiaisinthehouse/ts_home.html
Author: Wendy Johnstone, M.A. Gerontology