Simple tips prevent caregiver burnout
February 1, 1997 6 minutes read
Simple tips prevent caregiver burnout
Roughly 25 million Americans provide daily care for chronically ill or frail elderly friends and relatives. What does this mean for long-term care managers? In practical terms, caregivers are the difference between keeping a client at home or facing a premature admission to a skilled nursing facility. And, more daunting still, without informal caregivers, an already taxed U.S. health care delivery system would face an additional financial burden of nearly $300 billion annually, according to the National Family Caregivers Association in Washington, DC.
"The $300 billion figure is a conservative estimate based on government data on the number of caregivers and the going rate for home care aides, according to the National Association for Homecare," explains Suzanne Mintz, president and co-founder of NFCA and herself a caregiver. "Few people, many case managers included, fully realize the extent of caregiving in America, or the significance of caregivers on the health care delivery system. Without the support of informal caregivers, the formal health care system in this country would crumble, and the risk of caregiver burnout is high because caregivers report much higher rates of depression and illness than the general population."
Studies confirm that 75% to 80% of all chronic care services are delivered by informal caregivers, adds Molly R. Gavin, ACSW, LISW, president of Connecticut Community Care, a long-term care case management company in Bristol. Case managers who empower caregivers to help themselves will reduce the number of elderly and chronically ill or disabled Americans who are institutionalized each year, say Mintz and Gavin. In fact, they stress that by putting together an arsenal of simple, inexpensive caregiver support tools, case managers can win the battle against caregiver burnout and premature institutionalization.
Step one: Love thyself
The first step in supporting caregivers is to convince them that they can't care for others without taking care of themselves, says Mintz. NFCA has developed "The Principles of Caregiver Self-advocacy," which include the following:
• Choose to take charge of your life.
• Love, honor, and value yourself.
• Seek, accept, and at times, demand help.
• Stand up and be counted.
Caregivers often experience a sense of isolation, say Mintz and Gavin. In finding ways to help caregivers carry their daily burden, case managers must find methods to help end that isolation. "It's also important for case managers to remember that caregivers are individuals and there isn't one formula that fits every family situation. Case managers will have more success if they allow the caregiver to identify what types of support would be best for them," notes Gavin.
Since there is no "one size fits all" formula for providing caregiver support, our experts suggest that case managers consider implementing several of the proven methods outlined below.
• Drop a card or note in the mail.
"We have a Cards for Caregivers program which uses volunteers, who are themselves caregivers, to send special messages to caregivers several times a year," notes Mintz. "This program has double rewards because the volunteers feel good that they are helping others, and the card recipients feel good when the cards arrive," she notes. "We often get calls the day the card arrives from the caregiver, saying, 'How did you know I needed a little boost?' Of course, the timing of the card is usually simply coincidence, but it proves how effective such a program can be."
• Set up caregiver networks.
Establishing a caregiver support network gives caregivers someone to talk to who shares similar burdens. It can also help set up informal respite care programs, note our experts. "Caregivers often complain that no one understands what they are going through. The easiest way to help them feel less isolated and alone is to help them find other people who know exactly what they are going through," says Betsy Pegelow, RN, MSN, director of special projects for the channeling program at Miami Jewish Home and Hospital for the Aged.
Miami Jewish Home once published a free mini directory for caregivers to help establish a caregiver network. "We had caregivers fill out a form that listed their geographic area, their hobbies, information about who they were caring for, the times and days they might be available for meetings, their employer or former employer," says Pegelow. "People often feel more comfortable with people who are similar in experience to themselves. The directory was easy and inexpensive to put together," she adds.
NFCA also provides a caregiver network service, notes Mintz. "We give members a questionnaire to fill out and run it through our database. We try to establish links between caregivers living geographically close together with similar relationships and conditions," she explains. "Helping caregivers recognize that even negative feelings are normal and natural and that others feel the same way, helps ease the isolation of caregiving and helps caregivers feel better about themselves."
• Provide respite care.
Not all patients who need long-term care qualify for respite care benefits, but case managers can still find creative solutions to offer caregivers a much-needed break from caregiving duties, says Gavin. "It's the case manager's job to first help the caregiver recognize the need for respite care," she notes. Here are a few questions she suggests case managers use to gauge the stress level of caregivers:
• When was the last time you got away for the weekend?
• Have you had to arrive at work late or leave work during the day due to caregiving duties?
• How many phone calls have you received at work during the day due to caregiving crises?
• Have you been able to meet your other responsibilities to your spouse? Your children?
• How has your health been? Have you been sick recently?
• When was the last time you took a vacation?
"Of course, it's also the case manager's responsibility to be aware of the family's financial situation. You don't want to ask a family you know is struggling financially when they last took a nice vacation. However, you could ask them, 'When was the last time you had an evening out?'" she notes.
As for finding affordable respite care for those who need it, Gavin has several suggestions. "Many families have success hiring college students to sit with family members for a few hours at a time, depending on their care needs," she says. (For a detailed discussion on unlicensed assistive personnel, see Case Management Advisor, January 1997, pp. 6-12.)
Other caregivers find help through caregiver support networks. "It's not uncommon for caregivers to work out arrangements with each other. 'Can you look after my mother and your mother one night so I can go out with my husband, and then I'll do the same for you?' Case managers can help suggest or facilitate this kind of respite co-op, or bartering system," she adds.
Involve siblings in care
Case managers can also facilitate discussions between siblings to help work out support for the primary caregiver. "For example, often in families one sibling bears the biggest burden for caring for a parent. Case managers can bring the siblings together to discuss sharing the caregiving responsibilities and give the primary caregiver respite care," she notes.
Connecticut Community Care has also developed an adult overnight camp for the frail elderly with the help of the Connecticut chapter of the Easter Seal Society, says Gavin. "Easter Seal has a camp in the country and for one week in the spring and one week in the early fall they offer a program for very compromised elderly adults. The camp is staffed for those weeks with health professionals and students. It provides a solid week of respite care for both the client and the caregiver, and most of the minimal fee is paid through a fundraising campaign."
Churches and synagogues are a good resource to tap into for respite care, as well, notes Gavin. "Case managers need to keep their ears to the ground for possibilities, and help educate caregivers to do the same," she notes.
[The National Family Caregivers Association in Washington, DC, offers the caregiver network, a quarterly newsletter, the Cards for Caregivers program, and other services for caregivers. There is a sliding membership fee scale, but the current cost for individual family caregivers is $20. For more information, contact: NFCA, 9621 E. Bexhill Drive, Kensington, MD 20895-3104. Telephone: (800) 896-3650.]
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