Before September 11, I had decided to use this column to focus on caregivers -- those Americans who provide care for elderly, disabled or chronically ill friends and relatives,
and their important role in healthcare decision-making.
But after September 11, when the entire nation began to grapple with the horrors of the terrorist attacks on New York and Washington, I came to a stunning realization: we are
now a nation of caregivers. Whether we lost a loved one, are helping those who grieve, or are just trying to help our family and friends cope with this terrible tragedy, we are
all tending to the needs of others. Thus, addressing the issue of caregiving is even more important post-September 11 and will remain so as we consider the future course of health
communications.
For at least the last decade, the role of the family caregiver has been changing dramatically. In part, this has occurred to meet the health needs of an aging population, which
now exceeds 34.5 million individuals aged 65 and over. Equally important to how care is given and from whom, is the fact that managed care policies require more home-administered
care, the result of shorter hospital stays and the trend towards more out-patient care.
Because of these new developments, surveys find that the actual number of caregivers is twice as large as previously believed. Specifically, a national survey of 1,000
Americans conducted for the National Family Caregivers Association (NFCA) found that 54 million Americans -- 26.6 percent of the adult population -- were involved in caregiving
in 2000, compared to earlier estimates of about 25 million caregivers. Moreover, NFCA reports that the majority of family caregivers are between 35- and 64-years-old, meaning that
many must juggle family and work while caring for a loved one.
The NFCA survey also revealed some surprising facts. Compared to previous data, which showed that 75 percent of "family" care was provided by women, the new survey found a more
even split: 56 percent female and 44 percent male. At the same time, the survey provided new evidence that caregivers are becoming an extension of the treatment team. Today, more
than half (52 percent) provide help with physical care such as dressing, transferring or toileting and 46 percent perform some kind of nursing care such as giving medications,
changing dressings and monitoring vital signs. These tasks are in addition to interfacing with the healthcare system, conferring with healthcare providers, filling and
administering prescriptions, and processing insurance claims.
Not surprisingly, these responsibilities come at a price. From an economic perspective, statistics compiled by Met Life put a cost of between $11 billion and $29 billion a year
on lost work days due to caregiving. And then there is the human toll. According to a study of 750 caregivers, conducted in 1999 by the University of Pennsylvania Family Caregiver
Cancer Education Program:
- 70 percent of caregivers reported taking between one and 10 medications a day;
- 62 percent said their own health had suffered as a result of caregiving;
- 54 percent visited family and friends less since assuming their caregiving role;
- 46 percent reported inadequate financial resources;
- 35 percent said they were overwhelmed by their caregiving role.
What these findings make clear is that caregivers not only play a vital role in the healthcare system but they need more and better information based on these common sense
communications principles:
1) Validating the role of the caregiver as a key decision-maker;
2) Encouraging an open dialogue between the caregiver and the healthcare team in making treatment decisions and respecting the right of the patient and caregiver to think
things over;
3) Making sure that caregivers understand the potential side effects of medications so they will know what to expect;
4) Being sympathetic to caregivers and supportive of their role;
5) Being proactive about resources available to help caregivers -- living with a chronic illness or disability requires more than medicine has to offer.
Better communications targeted to caregivers will reap very real benefits for all stakeholders. And the payoffs will be significant: better care for the patient; less stress
and illness on the part of the caregiver; reduced healthcare costs; and more satisfaction for all concerned.
The Cost of Caregiving
The following statistics, compiled by the National Family Caregivers Association, put a human face on America's caregivers and their challenges:
- 59% of adults either currently give care or expect to become a family caregiver;
- Last year, more than one quarter of the adult population provided care for a sick or disabled family member or friend;
- Caregiving is no longer women's work; men comprise 44% of America's caregivers;
- Family caregivers provide approximately 80% of home care services;
- The value of the services family caregivers provide for "free" is estimated to be $196 billion a year;
- 61% of "intense" family caregivers (those providing at least 21 hours of care/week) have suffered from depression;
- Elderly caregivers with a history of chronic illness who are stressed by caregiving have a 63% higher mortality rate than their non-caregiving peers;
- As many as 75% of caregivers are "going it alone," without help from other family members;
- The pool of family caregivers is dwindling: In 1990, there were 11 potential caregivers for each person needing care. In 2050, that ratio will shrink to 4:1;
- American businesses lose between $11 billion and $29 billion yearly due to employees' need to care for aging loved.
Nancy Glick has recently joined the Washington office of Ruder Finn as executive vice president of the healthcare practice. She previously served as a senior vice president at
Hill and Knowlton, Washington, DC. Reach her at [email protected] or by calling 202/974-5083.