Caregiver Connection

Awareness of caregivers' issues has come a long way in 20 years. iStock / Susan Chang
Reprinted from PN/Paraplegia News June 2016

20 years of change

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It’s been 20 years since I started writing this column. So many things have changed, not the least of which is my age. 

In 1996, I was 50 and the National Family Caregivers Association (NFCA), the organization I co-founded, was just three years old.

Now I’m retired. My husband, Steven, has more trouble from multiple sclerosis (MS), is in a wheelchair and needs help with all activities. 

On the upside, we have a 15-year-old granddaughter, the product of a terrific daughter and equally wonderful son-in-law, who live just 10 minutes away. We have good friends and neighbors, very good health insurance and enough disposable income to buy the products and services we need to deal with all the problems Steven’s disability has created. 

You, too, of course, have seen enormous changes in your lives. I’m sure there have been changes that make life more difficult and those that make it more enjoyable. 

Social Awareness

Some of the upsides for all of us have come about because of the extraordinary changes in medical care, technology and more awareness by society of what it means to be a family caregiver. 

Many of the drugs now available to reduce MS symptoms and/or slow its progression didn’t exist 20 years ago. There are new tests to help with diagnosis, more products to enable people to function independently and more scientists working to find cures for MS and other diseases. 

In 1996, family caregiving wasn’t a daily topic of conversation. In fact, the term was barely known outside of the small circle of people who were researchers or advocates. 

The first article I wrote for PN was, Caregiver Syndrome, An Unacknowledged Illness. Today, even though it still doesn’t have a name, there is widespread recognition that the work and stress of caregiving has a large impact on the well being of family caregivers. 

Scientists, doctors, health systems, policymakers and some presidential candidates are calling for support and education for family caregivers.

One of the milestones in the journey toward family caregiver recognition is the multitude of surveys and studies published in both popular media and professional journals. 

Their findings prove what we caregivers know from experience: Caregiving in 21st century America is an experience outside the norm, especially for those who live with their care recipients, are caring for someone with dementia or other mental conditions and/or have been 
providing care for a long time. 

The first of these surveys to gain national attention was Caregiving in the U.S., published 22 years ago in 1994 by the National Alliance for Caregiving. The survey has been repeated several times since, and each time its findings become the new norm in caregiver data.

Legislative Action

The establishment of National Family Caregivers Month by the NFCA grew from a local event to a truly American one.

It’s celebrated in communities large and small, in senior centers, hospitals, on radio and TV and via state and national proclamations, all of which have brought attention to who we are, what we do, the help we need and, most importantly, have spurred the development of actual programs to help family caregivers. 

A big milestone was the passage in 2000 of legislation to create the National Family Caregivers Support Program, the first national effort to help family caregivers. Authorized as part of the Older Americans Act, the program still provides funds to states to educate family caregivers and help them access services, including respite.

A significant step forward in the fight for family caregiver recognition and assistance has been the realization and acceptance of the fact that caregiving isn’t only an issue of senior care but is truly a lifespan occurrence that impacts families in all stages of life.

Last year, members of the Senate and House of Representatives created the Assisting Caregivers Today Caucus, a bipartisan initiative to increase its members’ understanding of the problems affecting family caregivers, raise the awareness of their colleagues and seek policy solutions.  

AARP is leading an effort to enact state-based legislation called The Care Act to identify family caregivers on medical records, inform caregivers of their loved one’s pending discharge and provide them with helpful advice and services. At least 18 states have already enacted such legislation. 

Health Care Inclusion

Since retiring, I’ve focused my efforts on gaining recognition for family caregivers within the health care system.

Specifically, I’ve worked on having caregivers identified on medical records, both those of their family member/friend and also their own, so that their health and well being can be tracked. I see this as a precursor to having family caregivers recognized as lay health providers, whose home-based efforts are very important to the treatment of patients. 

These are only a few of the things that have happened in the past 20 years that are making a positive difference in the lives of family caregivers. But I’m not a Pollyanna — far from it. 

I know that despite the progress made, the vast majority of family caregivers haven’t been touched by any of these initiatives; nevertheless, I’m optimistic. Twenty years is a long time, and I believe that in 2036 caregiving will look a lot different from the way it does today. And it will look different again in 2056.

Caregiving is a journey that many of us have been on for a long, long time, but the effort to improve the lives of family caregivers and their loved ones is still in its infancy.

 I’m looking forward to seeing what happens as caregiver advocacy matures.

Suzanne Mintz co-founded the National Family Caregivers Association, which is now known as the Caregiver Action Network, and contributes regularly to PN.   


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