READERS GUIDE

Questions and Topics for Discussion

1. In The Vanishing Family, Barb watches her mother transform from a loving, engaged parent into someone she barely recognizes. How did this early experience shape Barb’s understanding of her family, and how did it influence the choices she made later in life?

2. One of the most heartbreaking aspects of frontotemporal dementia (FTD) is that it can fundamentally alter a person’s personality. How does the book challenge traditional ideas about identity? When someone’s behavior, values, and relationships change dramatically, what remains of the person they once were?

3. Throughout the book, family members respond differently to the burden of caregiving and uncertainty. Compare the paths taken by Sue and Barb. What motivates each sister, and how do their different approaches reflect broader ways people cope with crisis?

4. How does The Vanishing Family portray the emotional toll of caregiving? What sacrifices do family members make, and how do they shape their identities and relationships?

5. The book unfolds partly as a medical detective story. How did learning about the science of dementia and this family’s genetic mutation affect your reading experience? Did it affect the way you viewed the family’s struggles?

6. Genetic testing presents both opportunities and challenges. If you were a member of this family, would you choose to learn whether you carried the mutation? What factors would influence your decision?

7. Many of the affected family members begin displaying behaviors that strain or damage relationships long before receiving a diagnosis. How does the book encourage readers to think differently about accountability, illness, and compassion in these situations?

8. The title The Vanishing Family suggests more than the loss of individual family members. What do you think is “vanishing” throughout the book—memories, relationships, identities, a way of life, something else?

9. Robert Kolker balances deeply personal stories with broader questions about medical research. What ethical responsibilities do researchers have when working with families affected by inherited diseases? What does the family gain—and risk—through participation in research?

10. Despite its devastating subject matter, the book ultimately offers hope. What role does hope play in the narrative? Is it found in scientific progress, family bonds, personal resilience, or something else?

11. The book explores the tension between fate and agency. To what extent are the family members defined by the mutation they carry, and to what extent do they retain the power to shape their own lives and legacies?

12. How does the author’s portrayal of FTD differ from common public perceptions of Alzheimer’s disease and other forms of cognitive decline? What did learning about FTD help you understand about dementia more broadly?

Suggested Reading

Resources for Learning and Support

For readers interested in learning more about frontotemporal dementia (FTD), genetic forms of dementia, caregiving, diagnosis, and ongoing research, the following organizations offer valuable information, support, and opportunities for involvement.
 
The Association for Frontotemporal Degeneration (AFTD)
AFTD is the leading U.S. nonprofit organization dedicated to improving the lives of people affected by FTD and advancing research toward treatments and a cure. The organization provides educational materials, support groups, caregiver resources, webinars, advocacy initiatives, and information about genetics and research participation. AFTD also funds scientific research and works to increase awareness of FTD among health-care professionals and the public. AFTD provides diagnostic checklists that can help identify FTD red flags that may not appear on other screeners.

Website: https://www.theaftd.org/
 
Cure MAPT FTD
Cure MAPT FTD is a family-led advocacy organization focused on focused on microtubule-associated protein tau (MAPT)-related frontotemporal dementia, the rare inherited form of FTD that plays a central role in The Vanishing Family. Founded by families directly affected by MAPT mutations, the organization works to raise awareness, connect families, accelerate research, and advocate for the development of treatments and clinical trials.

Website: https://www.curemaptftd.org/