SHARING THE CARING: How to Avoid Caregiver Burnoutby Shirley Cohen
published in "THE NEW FILLMORE" - MAY 2004 - San FranciscoAs anyone who's ever done it can attest, caring for a parent or relative with Alzheimer's disease is one of the most exhausting and stressful jobs you can have.
As though it were not taxing enough to witness the psychological and cognitive decline of a loved one, many adult children who provide care for a parent or relative must simultaneously balance these responsibilities with the demands of their own families and careers.
The result, all to often, is that family caregivers have little or no time for themselves and the activities they enjoy, and their relationships with friends and family suffer. Feelings of helplessness, guilt, exasperation and depression are common among family caregivers, as are sleep deprivation, fatigue and fantasies of escape.
"Instead of feeling a sense of accomplishment, many caregivers end up feeling burned out and depressed," says Nina Pflumm, a geriatric care manager in San Francisco, who notes that the average Alzheimer's patient lives eight years after diagnosis. "And when they realize they aren't fulfilling all their family and work responsibilities, caregivers are often hit by an overwhelming sense of guilt."
Indeed, the psychological costs of caring for a loved one with end-of-life dementia are so great that most family caregivers are actually relieved when the loved one dies, according to a new study published recently in the New England Journal of Medicine.
This study also found that many caregivers feel more depressed while caring for a family member with Alzheimer's than they do after a loved one dies. Half of the family caregivers who participated in the study reported spending at least 46 hour per week - equivalent to a full time job - assisting a loved one with activities of daily living, and more than half felt they were "on duty" 24 hours a day and were under stress because they had to end or reduce their own employment to create more time for caregiving.
"This study gives us insight into the experiences of many of the people who provide long-term, unpaid care to elderly persons in their families - and it highlights the extreme level of emotional and financial stress many of them feel," says Richard Schulz, a psychiatrist from the University of Pittsburgh who headed the study.
An estimated 6 million people in the United States serve as caregivers for family members with dementia, a number that is expected to increase markedly over the next two decades.
So what can families do to alleviate the burnout and depression that so often affects family caregivers?
One possibility - placing a loved one with Alzheimer's in a nursing home - may provide relief from daily caregiving responsibilities, but research suggests this is no panacea for the guilt and depression felt by many caregivers.
The University of Pittsburgh study found, for example, that rates of depression are as high among family caregivers who place their loved ones in institutions as among those whose loved ones with Alzheimer's remain at home. Moreover, the study found that caregivers of relatives who were institutionalized did not experience the improvement in depression that was observed among caregivers whose relatives had died.
Placing a loved one in an institution "allows caregivers to re-engage in normal life activities, such as seeing friends, but it does not relieve the psychological distress," say Schulz. "Moreover, we found that caregivers of people who were institutionalized did not recover from their depression as fast or fully as those whose relatives had died at home."
A better solution, many experts agree, is for caregivers to learn to recognize the signs of burnout in themselves, and to take measures to counteract the the pressures they feel. "People caring for an Alzheimer's patient often run out of energy because they're so busy performing their daily tasks that they forget to monitor their own health and take care of themselves," says Joann Nelson, a geriatric care manger based in the East Bay.
To ward off or cope with "caregiver burnout," Nelson urges family caregivers to develop or participate in a support network and to consult with professionals about burnout issues. "It is sometimes helpful for people to hear from a professional that they are still good even if they can't be there all the time," she says.
Other recommended strategies include establishing some "quiet time" for meditation, varying the focus and order of daily responsibilities, maintaining a healthy diet and exercise and - when possible - rotating caregiving responsibilities with other family members, so that one person is not shouldering the entire burden.
"It may seem like there's no time for these things, but the importance of taking care of yourself cannot be overlooked," says Nelson. "Remember that if a caregiver is too burned out to be able to evaluate options and make good decisions then everyone is in trouble."
Caregivers can also "reduce their burden by and receive some respite by taking advantage of professional eldercare providers," says Schulz. Geriatric care managers, for example, can assist families with the management of a loved one's health care, living environment and activities of daily living.
Home care agencies - which can provide families with qualified, well-screened aides and companions - can also be a godsend for families caring for a parent or relative with Alzheimer's. "Home care aides can really take the pressure off family caregivers, even if you only hire them for weekends or part-time during the week," says Pflumm.
Other resources include adult day care programs, which offer a place for seniors to socialize in a supervised environment, and paratransit providers, which can reduce the amount of time families spend driving their loved ones around.
Shirley Cohen is the founder and executive director of Home Sweet Home Care, a home care agency that provides nurses, companions and homemakers to seniors and convalescing adults in the San Francisco Bay Area. Ms. Cohen can be contacted at www.eldercarexperts.com or by writing to her at Shirley@eldercarexperts.com.