A Q&A with Maria Shriver of the Women’s Alzheimer’s Movement

Shriver is the former first lady of California, an award-winning journalist and producer, an NBC News special anchor, the founder of the Women’s Alzheimer’s Movement and a mother of four. This interview has been edited and condensed by The Hill staff.

Q: What led you to Alzheimer’s advocacy?

SHRIVER: My father was diagnosed with Alzheimer’s in 2003 and passed away from it in 2011. He had a sharp mind — a beautifully tuned instrument that left people in awe and inspired. That’s why it was so painful to watch this walking encyclopedia of a man go from knowing every fact about everything … to not knowing what a spoon or a fork was, or even what my name was, let alone his own. 

My father’s journey with Alzheimer’s propelled me to make this my mission.

I’ve spent the past 14 years fighting on the front lines as an activist and a journalist, working to raise awareness of this disease and to protect the future of America’s brains. In 2011, my report, “The Shriver Report: A Woman’s Nation Takes on Alzheimer’s,” uncovered for the first time ever that two-thirds of all the brains with Alzheimer’s in America belong to women. We also reported that two-thirds of all the caregivers in this country are women. Uncovering both of those startling statistics prompted me to make women a focal point of my Alzheimer’s advocacy.

Q: What is the mission of the Women’s Alzheimer’s Movement?

SHRIVER: I founded the Women’s Alzheimer’s Movement to help raise awareness and funds to figure out why it is that women are disproportionately impacted by this devastating disease. Every 66 seconds, a new brain in this country develops Alzheimer’s. Two-thirds of those brains belong to women, and no one knows why that is. That’s unacceptable to me. 

Q: How does the gender bias of medicine affect women and what are some ways to prevent that from happening?

SHRIVER: If two-thirds of all brains in America with Alzheimer’s belong to women, then it only makes sense that we need to push for more women-based research so that we can better understand what’s causing this imbalance. … Women’s hormones are different. Our chromosomes are different. How we handle inflammation is different. How we handle stress is different. Simply put, our brains are different. We need more people talking about this, and we need scientists to make women’s brains a focal point of their research. That’s not sexist. It’s just smart.

Q: What is the biggest problem facing caregivers that policymakers should address?

SHRIVER: I believe strongly that we need the government and our nation’s employers to develop policies supporting the growing needs of families.  With over 15.9 million family and friends providing over 18 billion hours of unpaid care to their loved ones with Alzheimer’s and other dementias, policies such as paid time off for caregivers is desperately needed. … This is a political issue, a corporate issue and a personal issue. The idea of flex hours in the workplace, increased access to affordable benefits such as long-term disability care, supportive tax credits and family paid in-home care are just a few ways to increase resources for the growing needs of caregivers. 

Q: Is there a specific piece of legislation or a regulation that you are pushing for?

SHRIVER: Earlier in March, I testified in Congress when I heard that Alzheimer’s funding was in jeopardy due to proposed cuts. What many people don’t know is that Alzheimer’s disease is the biggest biomedical crisis of our time. Alzheimer’s is the most expensive disease in the U.S., even more so than heart disease and cancer. Of the top 10 diseases, Alzheimer’s is the only disease without a means to prevent, cure or slow its progress. Since 2010, Alzheimer’s deaths are up by 89 percent, bankrupting families and the country when considering that projected cost for 2017 is $259 billion, and projected to reach $1.1 trillion. By 2050, a brain will develop Alzheimer’s every 33 seconds. We need funding to combat this disease at the level it deserves before it levels all of us and our healthcare system. 

Q: What are the most common misconceptions about caregivers?

SHRIVER: I think a common misconception is that caregiving is a negative experience or that the people who have taken on this role don’t want to be doing it. Without a doubt, caregiving takes a physical, emotional and financial toll on those who do it, but that doesn’t mean they don’t want to help. Caregivers step up to the plate because they care. A recent study from the Alzheimer’s Association found that the primary reason families choose to care for their loved one is to keep the family member at home. The same study also found an estimated 250,000 children and young adults between ages 8 and 18 provide help to someone with Alzheimer’s disease or another dementia. What we as a society need to do is ask ourselves, what can we be doing to support those who do this thankless job? It’s more important than ever for caregivers to also follow all the recommendations doctors have recommended to help prevent Alzheimer’s — reducing stress, exercise, sleep, healthy eating — all the daily activities most caregivers never have the time or capacity to do. 

Q: Where/what should policymakers focus on with their investments to promote caregiver health and skills? 

SHRIVER: Increase support of local programs that offer assistance to caregivers is a start. This can come in the form of more local respite care opportunities, but also more opportunity for training on leading techniques and resources to educate and inform caregivers on issues related to the disease. Increasing resources to communities lacking nonprofit and community-based infrastructure would benefit caregivers who especially feel isolated and disconnected. 

Q: What makes respite programs important for caregivers?

SHRIVER: Burnout is one of the greatest challenges caregivers face. With the never-ending 24/7 daily job caregivers face, they rarely get any time off. Respite programs help ease that burden, but we need more affordable solutions so that they can be within reach for everyone who needs them. The Women’s Alzheimer’s Movement has partnered with Home Care Assistance — one of the nation’s largest providers of home care — to award 60 respite care grants this year to individuals who need them. We hope to continue to provide that type of support, and we challenge others in a position to do so to do the same.

Q: Do you have any advice for someone who is currently acting as a caregiver?

SHRIVER: For one, know that you’re not in this alone. Seek support from family, friends, your community and caregiving organizations. Don’t be afraid to ask for a little help. Caregiver guilt is common, but there’s nothing to feel guilty about. You can love the person you’re caring for, but hate how challenging the act of caregiving can be. That’s a normal feeling, and it’s OK. Do the best you can and remember that you only have so much control over the situation that you’re in. Accept that you’re going to have these feelings, but then do what you can to surround yourself with love and support so that you don’t become isolated or overwhelmed. None of us can do this on our own. Finally, share your story. Storytelling is a powerful tool, and your voice matters. So many people are experiencing what you have and are continuing to experience today … your challenges, your triumphs … what has helped you will probably help someone else, too. I hope you share your story with me and others around you, knowing you are helping to move others like you forward.