Celebrity is not an instant qualification to share insights about caring for loved ones living with Alzheimer’s/dementia, but messages of concern and hope from famous people can be uncommonly inspiring.
After all, celebrity makes those who enjoy it seem more important than the masses, huddled or otherwise, and it imbues their rarified experience with an air of significance and urgency that makes the rest of us pay especially keen attention.
Neither is celebrity a disqualifier. Despite the notoriety that might surround instantly recognizable people and seemingly propel them to a stellar realm where the jarring pathologies of real life cannot reach, the truth is those pathologies can and do touch us all.
So when celebrities take some time off from, well, the business of being
a celebrity to talk about how they cope with the effects of Alzheimer’s/dementia in their own families, we know they have a deeply personal stake in the message.
And when they go further and spearhead public awareness programs and lend their name and fame to fund-raising efforts that help pay for research and caregiving, we can trust that spending some time listening to them is a worthwhile endeavor for those who wish to better understand and help those living with Alzheimer’s/dementia.
Candy Crowley, CNN’s Chief Political Correspondent
Ms. Crowley, whose mother is living with Alzheimer’s, was a somewhat reticent keynote speaker at the 2014 Alzheimer’s Association Advocacy Forum, noting in a recent blog article
that she is very protective of her mother’s story and was unsure about sharing it, even on the night before her address.
Crowley laments that although her mother can still sometimes recognize her, there are moments when her mom no longer knows she’s alive. “I miss my mother most when I’m sitting across from her,” admits Crowley in the article.
She also points out Alzheimer’s/dementia as an issue especially important to women. After remarking that two-thirds of Americans living with Alzheimer’s/dementia are women, she implores, “Don’t hesitate to make this a women’s issue. You hear about the war against women, but there but for the grace of God is that congressperson with their mother, wife or daughter who could get the disease.”
Crowley went on to close her remarks by exhorting the crowd to take their personal stories directly to their legislators who might be unaware of the issue or focused on other agendas. “Take your story to Capitol Hill and make legislators feel your hopes and fears. I encourage you to open yourself up as much as you can when you get there. And do not give up. You’re doing God’s work. I know that from the heart.”
and NBC Nightly News
anchor Stone Phillips watched as his mother slipped into dementia and his father grew weaker with a chronic heart condition. He saw in his family’s situation the opportunity to create a document of the experience that would be a poignant keepsake of that time in their lives, as well as a wake-up call to other baby-boomers likely to be faced with similar challenges.
So in 2013 Stone produced and hosted Moving With Grace
, a PBS documentary chronicling his effort to provide care for his parents. The film shows the transitional process as Stone and his siblings help their parents transition to living spaces that change as they change—from their family home to a retirement community and eventually to an assisted living facility.
In a New York Times
blog article, Phillips says he made the film “to capture [his mother] before her dementia became too advanced.” In the article, Stone exhorts others to do the same. “Take out your phone, do some interviews, get some video. It’s precious to have,” he says. With the technology now available to adult children who have parents in transitional phases, this advice is meaningful, realistic, and can be acted on immediately.
Comedian and actor Seth Rogen encountered Alzheimer’s when he and his family began to notice the memory lapses indicative of early-onset in his mother-in-law. Soon after, they witnessed the progressive nature of Alzheimer’s as she eventually lost her ability to recognize loved ones, feed and dress herself, and use the bathroom—all by the age of 60.
From there, he leveraged his cultural status to found Hilarity for Charity
, “a movement led by comedian Seth Rogen to inspire change and raise awareness of Alzheimer’s disease among the millennial generation,” as described on the site.
The organization has developed a significant presence on college campuses around the country with HFC U, a nationwide outreach program encouraging college organizations to host their own fund-raising events. Over 230 schools have participated to date, kicking in over $200,000 in donations.
In February of 2014 Rogen went to Capitol Hill in Washington to speak before the Senate Committee on Appropriations about the very non-laughing matter of the rising cost of Alzheimer’s care and the current lack of funding for treatment and research toward finding a cure.
“Yes, I'm aware this has nothing to do with the legalization of marijuana,” begins Rogen in the address
. After the humor subsides, however, he goes on to deliver some powerful messages.
“While deaths from other major diseases like heart disease, HIV, and strokes continue to decline, deaths from Alzheimer’s have increased almost 70% in the last 15 years . . . [I’m here] to show people that they’re not alone. So few people share their personal stories; so few people have something to relate to—I know that if me and my wife saw someone like me talking about this, it would probably make us feel a little less alone,” says Rogen.
Beyond his impact on the Committee, Rogen’s message is a powerful reminder that opening up and sharing our experiences when Alzheimer’s/dementia touches someone we love can provide meaningful comfort and support to others in similar circumstances.
Over to You
Celebrity status or no, the passionate, creative commitment to improve the lives of those living with Alzheimer’s/dementia displayed by the notables profiled here is something you can embrace as you go about the work of helping your loved one or others in your care.
May you succeed famously.
* * *