The statement, “I wish I had cancer,” recently reminded me of the film Still Alice, based on Lisa Genova’s novel, and dementia’s lonely journey.
This is because these are also the words of Dr. Alice Howland (Julianne Moore), a linguistics professor at Columbia University, when her neurologist (Steven Kunken) diagnoses her with early-onset familial Alzheimer’s disease. She celebrates her 50th birthday with her physician husband, John (Alec Baldwin), and their three children. During a lecture, Alice forgets the word “lexicon.” Then, she gets lost on campus while jogging.
As her illness progresses, she becomes unable to deliver focused lectures and subsequently loses her job. Alice gets lost looking for the bathroom in her own house and soils herself. She fails to recognize her youngest daughter, Lydia (Kristen Stewart), after watching her play performance. Later, Alice visits her eldest daughter, Anna (Kate Bosworth), in the hospital to meet her newborn twin grandchildren, but doesn’t recognize her. Anna tests positive for the Alzheimer’s gene. Her unborn twins test negative, as does her brother, Tom (Hunter Parrish), a junior doctor. Lydia declines genetic testing.
Alzheimer’s is not only a disease of the elderly. The younger-, or early-onset type, affects those less than 65 years of age. In fact, up to five per cent of the over five million Americans with Alzheimer’s have the early-onset form, according to the Alzheimer’s Association. That’s about 200,000 Americans. Many are in their 40s and 50s. They may have careers, families, or even be caregivers when Alzheimer’s strikes.
Last week, one of my patients expressed memory concerns. After a series of other tests, I eventually asked him to draw a clock, a common method used to assess baseline cognitive function. When he tried, he realized he couldn’t do it. Then he said, “I wish I had cancer. People wear pink ribbons for you when that happens.”
A moment of realization for both of us, this reminded me how lonely illness is. Losing one’s mind is a journey we largely walk alone. Perhaps it’s because we’re often as afraid as our patients. Rarely do we ask, ‘What is it like?’ Or, ‘How does it feel?’ Questions considered common practice with cancer, diabetes, or heart disease.