Why are caregivers for the elderly such bad advocates? There are 40-60  million Americans caring for loved ones yet their needs are widely ignored by the political system.  Thus, politicians rarely rouse themselves to do much to help, and when budget-cutting time comes, what little assistance there is often ends up on the block.

The inability of caregivers to organize politically was a major topic of discussion at the AARP’s recent caregiving forum, where I joined nine other authors on elder care issues. Both the panelists and the audience seemed enormously frustrated that caregivers are unable to get their message out.

Jon Rauch, a Washington journalist and keen observer of politics, wondered why there is no “Occupy Elder Care” movement given the obvious need and the great numbers of family caregivers. He reminded the audience of the success of civil rights movements in recent decades–whether for African-Americans, women or gays. Why, he asked, can’t caregivers for frail seniors do that?

Interestingly, advocates for people with disabilities and their caregivers are very good at this. The Americans with Disabilities Act is just one example of how they have influenced policy. 

Why? In part it is because people with disabilities can be powerful advocates for themselves while the frail elderly often cannot.

Another reason is that their caregivers have very different perspectives. A mother may care for a developmentally disabled child  for decades. She may have built a strong support network of friends, family, and other parents of DD kids. And because her child may be spending several hours a day in school, she has time to organize or contact politicians.

It is different for those caring for elderly parents or spouses. They often have no network of support. They have no free time. And their caregiving experience is often time-limited. It may last a few months or a few years. Rarely, it will last five years or more.

Most important, it ends with death. Every time. And when it is over, caregivers often want to put the experience behind them. The last thing most want to do is relive it  for some politician.

Going back to Jon’s question: Your race, gender or sexual orientation is a fundamental part of what you are –and what you are for your entire life. But caring for a parent or aging spouse is not. It is usually a transitory and difficult event. While it lasts, it is all-consuming. But then it is over, and you are no longer a caregiver. You are what you were before.   

Finally, a word about organized lobbying groups. There are plenty of big, powerful organizations in Washington that represent , in some way, the interests of the frail elderly and their families. But they often have other issues on their plate.  For AARP–the biggest–caregiving must compete with issues such as Medicare and Social Security for attention.

 Similarly, the top legislative goal for disease-oriented groups such as the Alzheimer’s Association is often research funding, not caregiving. 

There are a handful of groups that do attempt to represent caregivers. For example, the National Family Caregivers Association (whose founder, Suzanne Mintz participated in our panel), and the Family Caregiver Alliance advocate. Caring from a Distance provides support for long-distance caregivers. And the National Alliance for Caregiving does research and program development. But while these groups are energetic and important, they are small and struggle to attract attention. 

Thus, caregivers remain largely forgotten by the political system.  It is a shame. But it is true.