10/18/2010 09:45 am ET | Updated May 25, 2011

Elder Care in 2010: Denial is Not an Option

Posted in Honor of National Work and Family Month

As America began graying in larger numbers, it was said that the 1990s would be the decade when we began to take elder care seriously and address the many problems of aging in our country. But the 1990s came and went. Then it was said that the 2000s would be the "elder care decade," but there have been few signs that we are moving out of denial. That is -- until now, until the publication of The Shriver Report: A Woman's Nation Takes On Alzheimer's on October 15th.

Caring for her esteemed father, Sargent Shriver, who has Alzheimer's, has turned Maria Shriver into a powerful advocate. Until recently, Shriver writes, focusing on her mother's illnesses distracted her from feeling the full impact of her father's disease. In her words: "Call it what it was: denial. But since she's gone, my dad's Alzheimer's has hit me in the face, and it's cracked my denial wide open."

For me, it was caring for my beloved mother, whose death was hastened by a medical mistake.

If it takes personal experience to get us out of denial, then we truly are at a tipping point: the numbers affected by elder care are staggering. A Woman's Nation Takes on Alzheimer's, created with the Alzheimer's Association, finds that 5.1 million individuals over 65 have Alzheimer's and that 11.2 million people care for someone with Alzheimer's. And in The Elder Care Study: Everyday Realities and Wishes for Change, a new report released today by my own organization, the Families and Work Institute, we find that 42% of the U.S. workforce--nearly 54.6 million employees--have cared for an elderly parent or relative over the past five years. Of these, we find that approximately one is five is caring for someone with Alzheimer's, dementia, or other neurological disorders.

As the 78 million baby boomers move into their later years, these numbers will, without question, rise. At FWI, we find that 49% of the workforce expect to provide elder care in the coming five years.

If it's not the numbers, then it's the cost that will shatter our denial. The Shriver Report finds that the annual per patient cost of Alzheimer's is $56,800, with 60% of those costs being borne by families. They estimate that the societal cost is $300 billion a year.

Women, in the words of the Shriver Report, are at the epicenter of the Alzheimer's epidemic; 10 million American women either have this disease or care for someone who does. Both reports show that men are also deeply affected by Alzheimer's and our booming need for elder care. The FWI report investigates the experiences of a nationally representative sample of employees, and finds that women (20%) of women and men (22%) - are equally likely to have provided elder care in the past five years and are equally likely to be providing elder care now.

However, there are many differences in the way that these experiences play out in the lives of employed men and women. For example, women are more likely (44%) than employed men (38%) to provide elder care on a regular basis rather than on an intermittent basis. In addition, women spend more time than men providing care, and tend to provide more hands-on care.

We conducted a follow up study of those who are or have been elder care providers in our nationally representative study. In this qualitative study, we asked caregivers about their wishes for change. No surprise--they want greater workplace flexibility and more understanding of their situation from management. As far as their families go, they have just one wish--more help. When it comes to the medical system, they wish for more frequent and better-quality two-way communication with doctors and other medical providers; less overworked, more compassionate staff at medical and nursing facilities with the skills to listen and learn from the caregivers and the elders; and a more user-friendly, easier-to-navigate and less costly health care system.

When it comes to wishes about their own aging, denial is once again tempting to these elder care providers. Many find it too difficult, too depressing to imagine themselves in their elders' shoes. Their wishes are more about what they don't want to happen to themselves, rather than what they do want--not to be a "burden" to others, especially to their children; not to burden themselves or others with unaffordable expenses; and not to end up in a nursing home. Among their hopes for their own aging, elder care providers most often cite being able to live in their own homes, maintaining good health and remaining independent for as long as they can.

As our country grows older, we have to shake off this temptation to be in denial and heed the warnings of these new reports. As our denial cracks open, we know what to do to make things better. The wishes of elder care providers give us a doable roadmap. As the need for elder care, and Alzheimer's care, explodes in the coming years, we have to shake off the temptation of denial and heed Maria Shriver's strong call to arms.