Pam White has been in the later stages of Alzheimer's over the last year and, on June 6th, died peacefully at home with her family sitting by her side. POV extends our heartfelt condolences to Pam's family and all of her loved ones.
"She had many careers: a professional model, a teacher for the developmentally delayed, a social worker and health counselor at Milton Academy, and a therapist in private practice. She co-founded a Boston area a cappella group, The Second Wind, which is in its 43rd consecutive year performing. She was a trusted ally and feared opponent on the tennis court, and an exemplar sportswoman.
Even her battle with Alzheimer's disease was transformed into a work of art in The Genius of Marian, a feature length documentary directed by her son Banker White and his wife Anna Fitch.
Above all else, she loved her family, was fiercely loyal, and made everyone around her feel heard, loved, and lucky to have known her." -- Vineyard Gazette
For more resources on Alzheimer's, aging and caregiving, take a look at The Genius of Marian discussion guide and lesson plan, or visit The Genius of Caring, an interactive story-sharing project featuring those whose lives have been touched by Alzheimer's.
In September 2014, POV asked The Genius of Marian filmmaker Banker White what's happened since the cameras stopped rolling.
How is your mother (Pamela White) now?
She has changed quite a bit since the end of the film. That would be December 2012. Her visual spatial impairment is much more sever and that has affected her relationship to the physical world, so walking, navigating stairs, grasping silverware, etc. She needs to be guided through all those kinds of activities. Her mood is good, especially if she is surrounded with positive energy. She loves physical touch, holding hands, can be quite funny in conversation and still has that wonderful smile.
How has The Genius of Caring -- a public art and story-sharing project about the experience of caring for a loved one with Alzheimer's -- been received?
The response so far has been incredible and has given us a sense of the real need for this kind of project.
In the last year, I have reached out to many caregivers, both to include caregivers in the development stage so we have input from diverse communities and different experiences and to begin to the process of inviting these folks to share their stories which will make up the community. Within days of releasing images from the site and some simple messaging about the project via social media, dozens of caregivers have reached out to us and sent pictures of both heartbreaking and beautiful stories. There has also been a lot of gratitude expressed and I think it is because giving yourself to being a caregiver can be an isolating experience -- Isolating at a time when you need the most support. So a project that helps create connections with others going through the same thing and creates a public forum to share experiences has made people feel supported. Many people who have reached out and who will be profiled on the site also have moved through this experience and sharing is a way to process, but also feel like what they learned might have value for other's. The site will launch with a portrait of my father and we are scheduled to release 5 more documentary portraits to the site profiling caregivers from all over the country.
How has the film been used by medical communities and foundations that raise awareness about the disease?
Even before we were finished filming my brother Luke, who was in his residency at Columbia Medical School, starting using clips for the film is a third year seminar for neurology residents called, "Understanding Alzheimer's Outside of the Clinical Environment." At every stage of the project there has been real interest in the medical community and from a variety of nonprofits working to raise awareness, offer services and fund research.
We just recently finished working with the Gateway Geriatric Education Center at Saint Louis University to have the film CME and CEU accredited in time for the broadcast, making it the first film on POV to receive this type of accreditation. We are working with POV Engagement and a network of partners that will help publicize the opportunity for practicing physicians, social workers and medical professionals to receive continuing education credits for watching the film.
We are also working with the National Alzheimer's Advisory Council and White House Office of Public engagement to plan a DC screening in early 2015. The film is being highlighted at the 2015 American Association of Geriatric Psychiatry annual meeting plenary session "TITLE: The Genius of Marian: A perspective on family caregiving and the role of the Alzheimer's Association."
We worked with Working Films, REEL AGING and the Camden International Film Festival on a Fledgling Fund supported regional screening tour in Maine, called 'Aging in Maine,' which screened the film in theaters, community centers, at universities and at conferences statewide. This regionally focused strategy was very effective and we are currently developing a similar plan with community based, health and arts organizations to host screenings and events in California, New England and Mid-West region (Indiana, Ohio, Illinois, Michigan and Wisconsin).
Have there been any advances in Alzheimer's research since you finished the film that you have found particularly promising?
In the last year or so it does feel like people seem to be taking notice of what a critical issue this is for our country. The Genius of Marian was profiled in a Newsweek article this year called "Alzheimer's Is Expensive, So Where's the Research Money?"
Within the research community there does, however, seem to be energy and optimism. There have been no projections of a drug or a cure, but there have been a series of profound developments that have undoubtedly gotten us closer to our first meaningful treatments. But everyone should know that research is still scandalously underfunded and absolutely needs more government and private sector support.
Here are a few links to recent articles written by the author and advisor to the project David Shenk on this topic:
- Are Brain Cell Regeneration Drugs Ready for Prime Time?
- Alzheimer's and Down Syndrome: Overlap and Opportunity
- Diagnosing Alzheimer's: New Blood Test Suggests Possible Breakthrough
Participation in drug trials has been critical to research. The Alzheimer's Association has been key and significantly involved over the years in supporting this work by funding trials and funding the researchers who are the Investigators running the trials. See "Drugs Show Promise in the Quest to Prevent Alzheimer's Disease".
Have you continued filming your mother and family after making the film? What are you working on next?
I have continued filming. The Genius of Caring site is launching with a portrait of my father in the role that he plays as mother's caregiver. This was all filmed by Anna and I this summer and will be a great way for people to see where we are now as a family. We will producing caregiver portraits for The Genius of Caring and continually developing that growing online community throughout the year. Anna and I are also in late stages production on another film called YO which follows an amazing woman Yolanda Shae for the last two years of her life. She passed away a year ago but lived an inspirational life until the end. Her storytelling and unique approach to the end of life is heart of the film.
I have also been very involved with a variety of projects in Sierra Leone that grew out of The Sierra Leone's Refugee All Stars (POV 2007) project. In 2009, I founded a filmmaking collective and media center in Freetown Sierra Leone called WeOwnTV. Over the past five years I have played a variety of roles with these young African filmmaker, from educator and mentor to collaborator, editor, producer. Collectively the team has produced dozens of films that I am very proud of.
It has been in the last few months however that I have realized the real importance of what the center provides a country like Sierra Leone. The team has been very involved in a Public Health campaign in the midst of the Ebola outbreak ravaging the subregion. We are uniquely equipped in Sierra Leone, with Hd production and post-production facilities and filmmakers at WeOwnTV have been working with local actors to produce Public Service Announcements and educational dramas.
Misinformation and distrust of government and international health workers has been a part of the reason why they have not been able to contain the outbreak, so local media, produced by indigenous filmmakers is playing a critically important role. WeOwnTv filmmakers are working directly with the Ministry of Health and been asked to join a task force with the office of the president. They are also producing documentary content both independently and for some foreign media groups, making sure that an authentic West African voice is being a part of how this history is written. Here is a link to more information about this work: http://weowntv.org/donate/ebola-campaign/