For This I am Grateful: Living with Dementia

By Christine Thelker

Having worked as a nurse in dementia care, Christine Thelker felt that a dementia diagnosis was the worst news a person could receive. When Thelker’s doctor told her that she had vascular dementia at 56 years old, she gave up her home, her car and her ability to drive along with her hopes and dreams. However, despite anticipating the losses ahead, Thelker decided, “I’m not done yet.” Thelker found a new purpose as an advocate for others living with dementia through Dementia Alliance International. For This I am Grateful recounts her discovery that life continues to be beautiful living with dementia.

If I Understood You, Would I Have This Look on My Face?

By Alan Alda

Best known for portraying Captain Hawkeye Pierce on the television series M*A*S*H, actor, screenwriter, comedian and author Alan Alda has spent decades exploring how people relate to each other. Motivated by his experience sharing medical knowledge as host of PBS’s Scientific American Frontiers, he began exploring how to improve communication between doctors and patients. If I Understood You uses improv, storytelling techniques and scientific research to guide better communication with all the people in our lives.

Weeds in Nana’s Garden

By Kathryn Harrison

In this all-ages book, we meet a young girl and her grandmother who share a love of gardening, but one day weeds appear in their treasured plot. The girl discovers that her grandmother has Alzheimer’s disease tangling her thoughts like the weeds do their flowers. Kathryn Harrison’s beautiful illustrations help children understand and cope with the difficult changes that happen when a loved one has dementia. A donation from the purchase of each book goes to the Alzheimer Society of Canada.

Aliceheimer’s: Alzheimer’s Through the Looking Glass

By Dana Walrath

In Dana Walrath’s graphic novel, she creates a series of illustrated vignettes about the shared journey of mother and daughter living together after her mother, Alice, develops Alzheimer’s disease. Using cut-up pages from Lewis Carroll’s Alice’s Adventures in Wonderland, Walrath rewrites what we think about aging, inviting us into a world of pirates, time travel and dead fathers who hover in trees. Aliceheimer’s offers a unique glimpse into living in partnership with dementia.

BY US FOR US

This series of guides is written by people living with dementia for people living with dementia

When Brenda Hounam, who lives in Ontario, was diagnosed with Alzheimer’s disease at age 53 in 2000, the disease was commonly thought to be something that only affected older people. Searching for resources, Hounam was dismayed to find there was no peer support near her, and the information available was only geared towards care partners rather than those experiencing the disease themselves. She also faced misconceptions such as the belief that those affected weren’t able to be involved in their own care. Hounam decided to reach out to others with early-onset memory loss to find out how they took an active role in their well-being. Through her contacts with Alzheimer Society of Brant, the Alzheimer Society of Elgin-St. Thomas and the Murray Alzheimer Research and Education Program, as well as talking to several Ontario residents living with dementia, Hounam was inspired to develop the “By Us For Us” guides (BUFU). Hounam’s vision was clear: to place importance first on the experiences, suggestions and tips from those directly affected BY dementia, FOR dementia. Over the years, hundreds of people from diverse backgrounds have contributed to the guides, offering insight into their unique experiences with the disease. 

“It was my idea,” says Hounam, “but everyone that has ever contributed in any way, that has the largest impact. The more experiences, tips and strategies that are mentioned in the guides, the better chance people reading the information have of connecting or trying suggestions. We are all unique individuals with [different] experiences and what we use to help us will be different.” 

By amplifying the voices of those affected, the guides create a community where people with dementia share knowledge enabling others to make empowered life choices. 

“If you’re speaking up for yourself, you’re an advocate, for yourself and for everyone with dementia,” says Hounam. [ ]

Physical copies and digital downloads of the guides are available at the-ria.ca/resources/by-us-for-us-guides