The list of famous people who are or were victims of Alzheimer’s disease is astonishing. There’s crooner Perry Como, political leaders Winston Churchill and Ronald Reagan, and actress Rita Hayworth to name a few.
But whether you’re famous or not, Alzheimer’s disease, and other forms of dementia, imposes a small world on its victims and their caregivers. It’s personal, it’s challenging, and most of us have been touched by it in someway.
On Thursday, Feb. 18 at 7 p.m. Julie Leffelaar, support and education coordinator for the Alzheimer Society ofBC, will give a free talk entitled Understanding Dementia. Here’s your chance to find out more.
That Alzheimer’s has reached popular culture as a subject has helped to remove stigma and invoke compassion.Movies such as Away from Her (available on DVD at the library) took us from the early weeks post-diagnosis —after which Fiona checks herself into a nursing home — to the moment when she no longer knows her husband.The movie Iris, based on the book Elegy for Iris about the life of Irish novelist Iris Murdoch, haunts me still.
In neuroscientist and author Lisa Genova’s novel Still Alice (also a feature film) Alice, a scientist herself, learns of her own diagnosis with early-onset Alzheimer’s and then explores the changes that her brain — as well as her life and her family— undergo.
Graphic novelist Sarah Leavitt describes the same story — the one that plays out again and again in our society— from the other side as she tenderly recounts her mother’s diagnosis of early onset Alzheimer’s through note sand sketches in Tangles: A Story About Alzheimer’s, My Mother, and Me.
Children aren’t untouched, as the people they love begin to forget. In the picture book Grandpa’s Music: A StoryAbout Alzheimer’s by Alison Acheson, Grandpa and Callie both find solace in the piano, where Grandpa’s fingers still remember the notes, even if he can’t remember the words to the songs.
According to Oliver Sacks in his book Musicophilia: Tales of Music and the Brain, music can calm and even organize people whose memories are ravaged by dementia. Musician Glen Campbell toured with the disease;Spirit of the West frontman John Mann is still touring. Mann has been vocal about his diagnosis and prognosis,his family and his bandmates learning new ways to support him.
As hard a journey as Alzheimer’s can be, it has the power to teach us things, as Nelson author Eileen Delehanty Pearkes wrote about so beautifully in her memoir The Glass Seed: Fragile Beauty of Heart, Mind and Memory. For Pearkes, it was her mother’s diagnosis that set her on a road to self-discovery and the meaning of their mother-daughter relationship — an unintended gift.
The library has a number of books with practical advice for families, caregivers, and the newly diagnosed,among them Supporting Parents with Alzheimer’s by Tanya Lee Howe, The Alzheimer’s Answer Book by Charles Atkins, and The 10 Best Questions for Living with Alzheimer’s: The Script You Need to Take Control of yourHealth by Dede Bonner. Scientist, broadcaster and author Jay Ingram’s The End of Memory: A Natural History ofAging and Alzheimer’s offers a historical perspective.
The Alzheimer’s Society of BC at alzheimer.ca/bc offers a wealth of resources from good advice to advances in research.
Dementia is a journey none of us wish to embark upon in any capacity, and yet according to the Alzheimer’sSociety of Canada, about 15 per cent of Canadians 65 and older are living with Alzheimer’s or other forms of dementia — nearly 750,000 people — a figure that could increase to as many as 1.4 million by 2030.
Maybe now is a good time to be in the know.
Anne DeGrace is the adult services coordinator at the Nelson Public Library. Check This Out runs every other week. For more information go to nelsonlibrary.ca.