News & Events

Organization will educate and offer guidance to those who care for the chronically ill
By Carma Wadley - Deseret News senior writer

More than 50 million Americans about one in four were family caregivers at some point last year.

Family caregivers provide at least 80 percent of all home-care services. In fact, this service is conservatively valued at $196 billion annually.

Peter Durkson, left, and gerontology professor Scott Wright are working on establishing a foundation that will educate and help caregivers.

Johanna Workman, Deseret News

The numbers in Utah are equally impressive: The estimated number of family caregivers is close to 173,000; the estimated number of caregiver hours is more than 161 million; the value of this service is estimated at more than $1.3 million.

"If we had to suddenly shift all that to the public sector, it would cost taxpayers billions of dollars," says Scott Wright, associate professor and distance learning coordinator at the University of Utah Gerontology Center. "Family members that are doing this are our hidden heroes."

Family caregivers are a key part of our health care system, says Suzanne Mintz, president and co-founder of the National Family Caregivers Association. "There is not going to be a family in America that isn't impacted by caregiving at one time or another."

So, says Mintz, "to honor, thank and support our nation's family caregivers," November has been designated as National Family Caregivers Month.

It is a time for recognition of the important job caregivers do, she says, but it is also a time to focus on some of the hard issues of caregiving. The theme for this year is "Share the Caring," she says. "It focuses attention on the need for family caregivers to reach out for help and for friends, family, government organizations, employers and communities to provide the needed assistance. Caregiving is a societal issue that must be seriously addressed."

Caregivers deserve a pat on the back, they deserve accolades and recognition. But, adds Wright, they need more than that. "We don't just want to put them on a pedestal, and say 'good job' and then expect them to carry on as 'perfect' caregivers without further help or attention."

One of the problems, notes the NFCA, is that our health-care system has always been focused on meeting acute-care needs. But with the aging of America comes a growing realization that meeting the needs of the chronically ill and disabled requires a different approach one that utilizes both health care and community services and that includes family members as part of a larger team.

For many family caregivers, providing care becomes a full-time task. And a growing body of research is showing that family caregivers often suffer from feelings of isolation and frustration and that depression rates are higher than average. Sleep deprivation, back pain and anxiety are also common problems. The stresses of caregiving are the same whether it is the care of an elderly relative or the needs of a young child.

A recent survey conducted by NFCA found that family caregivers consistently put their loved one's well-being above their own. And only half agreed with the statement, "I have been provided the necessary training to do the caregiving required of me."

The trial-and-error process can be painful, says Peter Durkson, who has not only experienced it on a couple of levels but is also working to eliminate some of the problems.

"Five years ago, my mother passed away after a decline over a five-year period because of Alzheimer's. My father was her primary caretaker."

His father grieved for a long time. Then in February of this year he called Peter. "He wanted to establish some kind of foundation to provide help and information so other people would not have to go through the painful learning process that he did."

Durkson approached the Gerontology Center, and they now are working on establishing an Elder Caretakers Alliance that will offer education and guidance. They hope to be up and operating some time next year, with a Web site as a central clearinghouse for help and information and other services.

"But while we were developing this notion, my father began to decline." And, says Durkson, he personally went through the whole continuum of family caregiving. "I started with helping him go to the store. Then he needed more time each week. It went from once a week to two times a week to every day. He became incontinent. He was in pain. We arranged for home health care, but he needed more and more hands-on care."

A month ago Michael Durkson died. "The last month was pretty much 24-hours a day. But even so, we thought it was a passing crisis, that he would get through it and we would go on," says Peter.

Because his only sister lives in Seattle, Durkson provided the care which is a little unusual, he says. The majority of family caregivers are women. So he knows first-hand about the psychological, physical and economic impacts. He hopes the Alliance, that he's now working on as a legacy to his father, can provide help with those issues.

"Dad had always been proud, independent, self-reliant. For him to give himself up to caregiving was very hard. I had always been the son. So there's a psychological transformation that has to take place. And then there are all the attendant legal issues, all the forward planning a will, a living will, financial matters, all the end-of-life issues that are very difficult to bring up."

Nor, he says, does it end with dying. That brings the grieving process and the legal process. "Sometimes you need guidance. Sometimes you just want someone to talk to that understands."

And, says Dale Lund, director of the Utah Gerontology Center, a lot of cultural and religious and community expectations come into play. "Families often have a perception that to be good family members they have to do it all on their own."

And sometimes, he says, especially with extended care, caregivers make sacrifices that have long-term ramifications. "In order to be a 'perfect' caregiver, they sacrifice relationships with family and friends that can be very hard to repair later on. Divorce rates are also fairly high among caregivers."

So, says Wright, it is important while we are letting caregivers know how much we appreciate them, that we also let them know that they don't have to be perfect, that they don't have to do everything themselves, that help and information are becoming more and more available.

The Gerontology Center has put together a free booklet on Respite Care Services (call 585-9542). Salt Lake County Aging Services (468-2460) can offer resources and information as can other county aging offices. The National Family Caregivers Association Web site www.nfcacares.org offers help and information. And the Elder Caretakers Alliance is in the works.

Family caregiving is important now and will be even more important in the future, notes Wright. Utah ranks as the sixth fastest growing state for the 65 and older population. That age group has increased by 26.9 percent in the past 10 years.

The chances are very good that you or someone you know will be called on to be a family caregiver in the near future.