Dementia Care Around the World: An AlzAuthors Live! Virtual Q&A

By Marianne Sciucco

September is World Alzheimer’s Month.

One hard fact we have learned through working with authors from across the globe is that dementia care varies from country to country, and from cities to rural areas. In some regions, health care and community resources may be abundant, while in others they may be nonexistent. A variety of factors influence what, if any, help is available. Those on a dementia journey may be confused about resources, unsure where or how to access them, and may not even be aware of what resources they need. Attitudes regarding a dementia diagnosis are also diverse, ranging from deeply pervasive stigma to unbreakable denial.

Conversation is needed across the world among those whose lives are impacted by dementia to compare notes, speak plain truths, and inspire each other to create change in our communities, from the family unit to the greater good. We aim to provide those conversations, to bring people together across borders and cultures to share our stories.

Please join us on September 13th at 2:00 pm EST for Dementia Care Around the World, Part One. In this AlzAuthors Live! Virtual Q&A we explore with three of our authors the similarities and differences caregivers and those living with dementia encounter as they seek care and search for solutions to the many questions and problems a dementia diagnosis brings. The authors featured in this event represent the United States, Canada, and Costa Rica. We hope their stories will inspire and empower you on your own dementia journey.

This is the first in an ongoing series. We hope to offer future discussions with authors representing other countries.

Event Details

  • This free virtual event is on Tuesday, September 13th at 2 pm EST via Zoom.
  • It will last one hour.
  • You will receive the link to the event a day or so before.
  • The program will be recorded and added to our YouTube channel and podcast.
  • The event is free but donations are welcome. Donate here

Register here

Meet Our Panelists

From the United States: Cindy Weinstein

Cindy-WeinsteinCindy Weinstein is the author of Finding the Right Words: A Story of Literature, Grief, and the Brain, the story of her journey with her father’s early onset Alzheimer’s. She says: “I studied neurology for a year at the University of California San Francisco and asked Bruce Miller, MD, head of the Memory and Aging Center, to write Finding the Right Words with me. My goal was to write a book that told the individual story of my father, his illness, me, a girl from New Jersey who loved literature, and also told a general story about people with dementia, their brains, and their caregivers. This would help people. Telling stories of my mother being stigmatized because people treated my father as if his illness were contagious would help others. It would give readers language to explain to others (and to themselves) what was happening in their loved one’s brain. Not everyone can go to UCSF to get a team of experts to provide a diagnosis and follow-up caregiving plan, and I wanted readers to have access to that knowledge, support, and empathy, all of which are essential for families to have.”

She has been a professor of English at the California Institute of Technology, where she currently holds the Eli and Edythe Broad Professor of English. At Caltech, she has had the great fortune to teach American literature to brilliant students, and to write several books along the way, including her most recent one, written with Dr. Bruce Miller, about her father’s early-onset Alzheimer’s.

Read Cindy’s AlzAuthors post

From Canada: Donna Thomson

Donna Thomson is co-author with Dr. Zachary White of The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver. She is also a caregiver and activist. The mother of two grown children, one who has severe cerebral palsy and medical complexity, she also helped care for her mother who lived with dementia until she passed away in the summer of 2018 at the age of 96. She says: “Our book seeks to help caregivers understand how caring for someone with Alzheimer’s or dementia is shaping them. We hope this new understanding of the caregiver identity, combined with a set of practical tools, will ease the burden of care for readers and reveal to them the strength and wisdom that comes with their care experiences.”

Donna is also the author of The Four Walls of My Freedom: Lessons I’ve Learned from a Life of Caregiving and blogs regularly at The Caregivers’ Living Room. She is a board director of the Kids Brain Health Network and is a leader and instructor in family engagement in health research. She also teaches families how to advocate for care at The Advocacy School and at

Read Donna’s AlzAuthors post

From Costa Rica: Katya DeLuisa

Katya De LuisaKatya De Luisa is an artist, expressive arts program designer, freelance writer, and author with 20 years’ experience working with those living with dementia and their families. She firmly believes that when we change the way we look at something what we look at changes.

Katya’s experience working in long-term care facilities as both a caregiver and as an art director has given her a wealth of insight into the dementia diseases, family dynamics, communication, miscommunication, and more. Her passion is communicating with people in late-stage disease using the visual arts, collage in particular. She believes that no matter how advanced a person’s dementia may be there is still a person inside who is reachable if we use the right tools and methods.

She is the founder and director of the non-profit The Infinite Mind Dementia Project in Costa Rica, and the author of the book Journey Through the Infinite Mind: The Science and Spirituality of Dementia.

Read Katya’s AlzAuthors post

Potential topics for discussion

  • obtaining a diagnosis
  • accessing care
  • community resources
  • financial concerns
  • insurance considerations
  • home care, assisted living, long-term care
  • stigma surrounding a dementia diagnosis

Registrants are also allowed to ask questions. You may present your questions in the registration form.

How to Help

We want to fill the Zoom Room as we believe these inspirational stories have much to offer caregivers regardless of where they live. Any assistance you can bring via your own network and platform is greatly appreciated. Please share our tweets and posts as you see them on social media, and pass this blog post on to your own friends, family, and followers.

Register now!

Please contact with any questions or concerns.

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4 Responses

  1. Originally from the UK, I’ve lived here in Brazil for most of my life. Since the ‘80s I’ve been teaching families about wellbeing and quality of life in dementia care by means of Support Groups, workshops and talks. I’m very interested in sharing experiences with people from other countries.

    1. We look forward to seeing you at the program! Thanks for writing. Marianne Sciucco

  2. This sounds very interesting – is there a recorded version to watch, since I missed the live virtual event? Regardless of location, one commonality is the need for families to ensure an environment that is as calming and familiar as possible. A little advance preparation can go a long way towards preventing or minimizing difficulties later.

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