Wall Street Journal

 

THE INFORMED PATIENT By LAURA LANDRO

 

 

 

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Help Caregivers
Help Themselves
November 28, 2007

When his wife, Chris, was diagnosed with breast cancer, southern California software developer Dave Balch took on a new full-time job: caregiver. During nine months of surgeries, chemotherapy and radiation, he changed her wound dressings, emptied surgical drains, administered medications, and washed his wife's hair until it fell out, often struggling himself with fatigue and mood swings, and finding little time for work.

Mr. Balch, 59 years old, is one of the estimated 45 million people who provide care for a loved one, including those with the most devastating diseases such as cancer, Alzheimer's and Parkinson's. Studies are increasingly showing that caregiving responsibilities can exact a drastic emotional, physical and financial toll, with caregivers experiencing high rates of depression, stress and other physical and mental health problems.

But evidence is also mounting that caregivers can cope better when they receive counseling sessions, in-home skills training, support groups, and assistance juggling care responsibilities. For example, researchers at New York University School of Medicine who studied a group of caregivers between 1987 and 2006 reported recently that even a short period of counseling can have a long-term beneficial impact on the emotional well-being of people caring for spouses with Alzheimer's disease.

Mary Mittelman, a research professor at NYU who led the study is conducting two studies for people caring for a parent with Alzheimer's and a third that will provide couples counseling for people dealing with early-stage Alzheimer's. Groups such as the Alzheimer's Association (alz.org) provide caregiver resources, including tips on how to cope with depression.

Experts say the burdens of care can often seem most trying during the holidays, when everyone else seems to be celebrating, and meeting the expectations of family gatherings can just add to the stress. A number of groups are offering advice on how to cope during the holidays; the Web site CancerCare.org, for example, offers a podcast of a workshop on coping with a loved one's cancer, including advice on scaling down family gatherings, inventing new and less elaborate celebrations, or exchanging holiday wishes via phone, email or videoconferences.

Mr. Balch, whose wife is still fighting recurrences of her cancer, has tapped his own experience to help other caregivers. He is writing and publishing a book, "Cancer for Two," and launching a Web site, thePatientPartnerProject.org, which allows caregivers to set up their own Web pages where friends and families can log on to read a single report with updates on the patient's progress. Mr. Balch says the Web site enabled him to eliminate time-consuming and stressful phone calls conveying the same details over and over again. Other groups, such as Carepages.com, offer similar services.

One of the most important lessons for caregivers is to keep one's own stress manageable, says Mr. Balch, who speaks about caregiving around the country in a program sponsored by biotech firm Amgen Inc. "It's like they say on the airlines," says Mr. Balch. "You need to secure your own oxygen mask before attempting to help others."

Last week, AARP, the Washington-based advocacy group, and the nonprofit coalition National Alliance for Caregiving released a survey of caregivers with Evercare, a unit of insurer UnitedHealth Group. Respondents reported that more than half of those caring for a loved one 50 or older are spending more than 10% of their annual income, sacrificing their savings, reducing personal care, and often quitting their jobs. A study last year estimated the total annual cost to employers for full-time employees with intense caregiving responsibilities at $17.1 billion.

CARE FOR THE CAREGIVER

 

Groups that provide help and resources for caregivers:

•  National Family Caregivers Association
(thefamilycaregiver.org)
Tips and guides for family caregivers, information on agencies and organizations that provide caregiver support

•  National Alliance for Caregiving
(caregiving.org)
Conducts research, offers Lotsa Helping Hands online calendar to schedule family and friends for help in time slots requested by caregiver

• Family Caregiver Alliance
(caregiver.org)
Links to caregiver resources by state; alerts on policy initiatives to aid caregivers

• Respite.org
Links to programs that offer temporary paid or volunteer care services to give caregivers time off

• AARP
(aarp.org/families/caregiving/)
Guide to caregiving; message boards for caregivers

A number of lobbying efforts are under way to secure more funding from the federal government for programs to help caregivers, and some experts are calling for formal assessment programs that could be used by health-care organizations to determine what kind of support caregivers may need. In the meantime, a number of Web sites offer links to agencies and organizations with free resources for caregivers.

More hospitals are providing services directly to families who will have to care for loved ones once they go home. Northern Westchester Hospital in Mount Kisco, N.Y., is dedicating a new caregivers' center Friday that will be used for individual and group counseling. A new program will include 15 volunteer Caregiver Coaches -- people with firsthand experience with caregiving will team up with social workers to help family caregivers coordinate friends, relatives and neighbors to assist with shopping, carpooling and everyday duties.

Hospital administrators say caregivers can help educate medical staff about the challenges family caregivers face. Catherine Lyons, associate director of clinical services at the University of Rochester Medical Center's cancer center, says she invited Mr. Balch to speak to 150 nurses about the ordeal he went through with his wife, "and you could have heard a pin drop," she says. "The nurses may be used to dealing with the complications from chemotherapy or infections, but it really helped them understand the burden that is on the family."

Experienced caregivers are also being tapped to help others new to the role. Dave Rodgers, a retired Kodak corporate finance staffer, agreed to join the patient and family council at Rochester after caring for his wife during her two bouts with cancer. Volunteering 20 hours a week, he makes the rounds of rooms where patients are receiving treatment and, with some guidance from the nurses, offers assistance to patients and families. Often, family caregivers will only talk to him when the patient gets called into an area such as radiation where they can't follow.

"They don't want to show how afraid they are around the patient, but as soon as they open up, it's so clear there's a real need to address their issues," says Mr. Rodgers.

• Email: informedpatient@wsj.com.