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Still Alice Discussion Guide for Readers living with Early Onset and/or Early Stage Alzheimer’s

I created this guide back in 2007, just before self-publishing STILL ALICE and selling copies from the trunk of my car. I was blogging for the National Alzheimer's Association at the time, and we offered this guide to many of the state chapters. Support groups for people with Alzheimer's, and not just for the caregivers, was still a new idea in most parts of the country, just starting to gain traction. For over a decade now, STILL ALICE has been used as a vehicle for conversation, as a bridge for connection and empathy, and as a guide for exploring feelings, fears, symptoms, and different perspectives.

Someday, STILL ALICE will be shelved as historical fiction, and we'll have no use for this kind of discussion guide. Until then....

Still Alice Discussion Guide for Readers living with Early Onset and/or Early Stage Alzheimer’s

1. Alice thinks her first signs of forgetting and confusion are symptoms of menopause. Her primary care doctor thinks that she’s not getting enough sleep. Her husband thinks she might be depressed. What did you, your family, and your doctor attribute those early symptoms to? Was Alzheimer’s on anyone’s radar?

2. In the interest of demonstrating what the diagnosis of Alzheimer’s should look like and of not writing a story that was 800 pages long, I gave Alice a straight path to her diagnosis. In reality, most people struggle to get to a diagnosis of Alzheimer’s, and the journey is typically long and arduous. What was your journey to diagnosis like?

3. When Alice is first diagnosed, she feels like she’s having an out-of-body experience. This couldn’t be happening to her. We then see her go through some stages of grief: Shock and Denial, Anger and Bargaining, Depression and Loneliness, Acceptance and Hope. What did you feel when you were first told you had Alzheimer’s? Have you experienced any of these stages of grief? What stage are you experiencing now? What about your family members and friends?

4. Unable to know if she’ll get the drug or the placebo, Alice enrolls in a clinical trial. Are you participating in a clinical trial? What has that experience been like?

5. Alice eventually leaves her position at Harvard, a job that has been the source of Alice’s identity and status for most of her adult life. Without it, she feels lost and isolated. “If I’m not a Harvard professor, who am I?” Have you experienced similar feelings? Who are you after you lose your job/parts of your self to Alzheimer’s?

6. Alice does her best to combat the progression of Alzheimer’s. She runs, practices yoga and meditation, eats a Mediterranean diet, tries to get plenty of rest, plays cognitive games, and even brushes her teeth with her non-dominant hand. What sorts of activities and strategies do you use to fight Alzheimer’s?

7. At times, Alzheimer’s brings Alice and John closer together and at other times, it drives them apart. At times, it creates great tension with her children, but it also creates the opportunity for Alice and her daughter Lydia to know each other in a new way. In what ways has Alzheimer’s changed your relationships with your spouse or partner, children, and friends?

8. Author Lisa Genova has said that Alice’s speech is “the essence of what people with young-onset and early stage Alzheimer’s want us to know.” Would you agree? What else would you add to Alice’s speech? What does it feel like to live with Alzheimer's?

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