For those of us who work with patients and in advocacy, a common occupational hazard is to speak of people with serious illnesses in the collective sense. That’s easy to do in discussing Alzheimer’s disease because the overall statistics are so jarring – more than five million people are afflicted with this terrible illness, a number expected to nearly triple by the year 2050. It is a disease that, at this time, has no cure.
But we should never lose sight of the unique, individual stories of the patients and caregivers who make up the Alzheimer’s-affected population. The lives that have been irrevocably changed by this disease deserve to be respected and recognized, as do those of the men and women who devote themselves to caregiving.
That’s why UsAgainstAlzheimer’s is so proud to work in partnership with Genius of Caring, a web-based initiative that provides the world with beautifully produced documentary portraits of those who serve as caregivers for loved ones with Alzheimer’s and other illnesses. We are a presenting partner for the video portrait of Kamaria Moore, a project that is part of a robust community engagement campaign and public art project that grew out of the documentary film The Genius of Marian.
I cannot urge readers of this blog post strongly enough to watch this video and get to know Kamaria and her mother Mary, who was diagnosed with Alzheimer’s at the age of 58. The documentary captures the poignant bundle of emotions Kamaria experiences – the joy of anticipating her wedding and the sadness in her mother’s inability to help in the planning, as well as the anguishing question of whether she can have and care for children of her own, while maintaining her daunting caregiver responsibilities.
As I watched Kamaria’s story, I’m reminded of how important it is to raise awareness of Alzheimer’s disease and its ramifications within the African-American community, as well as the need for the scientific and medical community to be conscious of the impact of Alzheimer’s on African-Americans. Studies have shown that the risk for Alzheimer’s is disproportionately high for African-Americans, a fact that needs to be reflected in the development and execution of clinical trials.
During the course of the year, I organize performances of the national award-winning stage play, Forget Me Not, a performance that takes the audience into the life of a family facing Alzheimer’s disease and shows the disease’s impact on relationships between family members, friends and people in the community. It is part of an effort to help educate the African American community about Alzheimer’s and how they can be a part of finding more effective treatments or possibly a cure through clinical research.
By sharing her story, Kamaria is building upon these conversations and allowing us to have an inside glimpse at Alzheimer’s and its painful toll.
June, by the way, is Alzheimer’s & Brain Awareness Month. There are any number of ways we can productively observe this month – contribute to Alzheimer’s research, write members of Congress and urge them to make this a national priority – but I hope a good number of people will take the time to visit the Genius of Caring website and get to know caregivers like Kamaria Moore. Her story embodies love, sacrifice and the great challenge being met by millions of Americans caring for family members or friends with Alzheimer’s.