Books, films, and innovative projects on Alzheimer’s disease, dementia, and memory loss are growing. I have assembled a short list of them.There are many foreign films, particularly from South Korea and Japan that are excellent. I hope that US distributors make them easier to get. Please feel free to add more in the comments section after this post.
Anne Davis Basting. Forget Memory: Creating Better Lives for People With Dementia. As Basting writes: “Wrestling with the meaning and role of memory in our lives can help us to understand our fears of its loss – and to imagine how investing in a “cultural cure” (raising awareness and reducing stigma) can go a long way toward relieving the symptoms of memory-related diseases and conditions.”
Anne Davis Basting. The Penelope Project. Innovative theater project. As Anne writes in her blog: “After 2 years of explaining, I think I finally made sense. This show is about telling the vast majority of America that they are wrong aboutold people and retirement communities. Regardless of disability –this is and can be a place of growth and learning. Like Penelope, we have dignity, complexity, cunning,wisdom, nobility – even if the world simply thinks we are waiting and doing nothing.”
David Shenk. The Forgetting: Alzheimer’s: Portrait of an Epidemic. If you read one book on Alzheimer’s, this is an excellent choice. Shenk is an excellent journalist and storyteller. Also available on PBS as a film in English and Spanish.
Hilda Goldblatt Gorenstein. Hilgos Foundation. I Remember Better When I Paint. 2009 documentary that shows how creative arts may help Alzheimer’s patients re-engage in life, through painting, visiting art museums, and performing music. Available on DVD. Youtube trailer for film.
Lee Jae-han Director. Eraser in My Head also called A Moment to Remember. Outstanding 2004 South Korean film. Available for download from South Korean websites.
Memory Bridge. The Foundation for Alzheimer’s and Cultural Memory. Memory Bridge creates programs that connect people with Alzheimer’s disease and related dementias to family, friends, and other people in their local community. Memory Bridge also creates programs that show the depths of memory that dementia does not erase
Nancy L. Mace, Peter V. Rabins. The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss. (A Johns Hopkins Press Health Book) now in its 5th Edition. Many consider this the best caregiver’s guide.
A friend found I’m Still Here by John Zeisel useful in helping him cope with his wife’s dementia. The book outlines an approach to treatment that has been put into practice at Hearthstone assisted living centers.
I’m revisiting this helpful list, as I start to conceptualize and shape an interactive digital story about memory loss—a biography of sorts, created with the purpose of gently inviting people to explore and understand the disease on a very human and personal level.
Meanwhile, this incredible three-platform project—a film (a documentary), mobile app, and website—is in production and seeking crowdsourced funding to make it happen: http://www.kickstarter.com/projects/zachjordan/carpe-kilimanjaro-a-transmedia-project/comments I’m not involved in the project but spoke with the producer, Zach Jordan, and am impressed by his story and passion.
The free mobile app in particular has great potential, as explained on the Kickstarter home page:
Provide information on clinical trials being pursued worldwide
Connect patients, caregivers, and physicians with relevant clinical trial data
Educate the public on crucial information and the latest research
Connect like-minded and similarly situated patients and caregivers around the world
Raise funding for ongoing research and patient / family support