An article on “caregiver burden” in the March 12 issue of JAMA (Journal of the American Medical Association) opens by describing a painful, nearly fatal, situation:
Mrs. D, at 84 years of age, was the primary caregiver for her functionally impaired 86-year-old husband and shot herself 3 times in a suicide attempt. Mrs. D’s family did not perceive the severity of the caregiver burden as a family picnic was planned for the day of her attempted suicide. Mrs. D did not leave a note and later stated she fully intended to kill herself. While recovering in the hospital, she expressed relief at not having caregiver responsibilities. Two months later, her husband died, which Mrs. D described as a release for her.
What stands out for me as a psychiatrist is that despite the depth of depression that led to Mrs. D’s potentially lethal suicide attempt, when she no longer felt trapped in the caregiver role, suicidality and depression lifted without psychotherapy or medication. Changing the situation provided the “cure.”
Years ago I had a related experience in my clinical practice. A man in his early 50s had become profoundly depressed (though not suicidal) after losing his job. We had a good relationship and he was very cooperative in his treatment, which involved different forms of psychotherapy, multiple trials of medications, and environmental manipulations.
But two years later, after a friend found a job for him, his depression lifted almost instantly. He did well at the new job and had no recurrence of depression during the several years we stayed in contact.
As much as 90% of the in-home long-term care provided to adults with chronic conditions is provided by unpaid family members and friends. The AARP Public Policy Institute and the United Hospital Fund surveyed a representative sample of 1,677 caregivers who had provided unpaid care to a relative or friend 18 or older during the past year. Their first report – HOME ALONE: Family Caregivers Providing Complex Chronic Care – documented just how demanding the caretaking role can be. Almost half of the caregivers performed medical and nursing tasks like administering medications and caring for wounds as well as “non-technical” tasks like bathing, dressing, and preparing meals. Few received training for the medical and nursing services they provided or inquiry about the burdens of caretaking from the health professionals involved in the patient’s care. Forty percent of the caregivers who performed medical and nursing tasks reported feeling “down, depressed or hopeless” during the past two weeks. For those who performed five or more medical and nursing tasks, more than half experienced these feelings.
During my residency training in medicine and psychiatry, I had the good luck to have received supervision from skilled social workers on how to work with my patients’ families. Then, during the years I worked at a neighborhood health center, I got to make home visits with experienced public health nurses. In my clinical practice, some of the most useful interventions I made were with the parents, siblings, and adult children of patients with severe psychiatric illnesses. These family caretakers depended on me for the direct services I provided to their family members, but I depended on them for the direct services they provided to my patients. I rarely saw the patient more than one hour a week. That left 167 hours outside of my office! I was grateful to the social workers and nurses who taught me to recognize the crucial role of family caregivers, to coach them in areas that required new skills, and to do my best to support their ongoing efforts.
A more recent AARP/United Hospital Fund report on Employed Family Caregivers Providing Complex Chronic Care revealed that employed caregivers are providing as much complex care as unemployed caregivers do. Given that they were juggling employment along with caregiving, it’s not surprising that they reported higher stress levels (61%) than were reported by those who were not employed (49%).
The AARP and the United Hospital Fund make a series of practical recommendations directed to federal and state policy makers, hospitals and other health organizations, accrediting bodies, health professional educators, and hands-on health professionals. With the aging of the baby boomers and the continuing efforts to reduce the use of hospitals, family caregivers will be even more important in the future. Health and the functioning of the health system depend on them.
If the physicians, nurses and others involved in Mr. D’s care had drawn out Mrs. D on how the caretaking role was affecting her, the suicidality that nearly led to her death might well have been averted.
[The March 12 issue of JAMA includes an excellent editorial on Easing the Burden of Family Caregivers and an excellent article by a young physician whose father was developing dementia, about the Caregiver-Centered Care she wished her mother, who was caring for him, would receive. On the same topic, see The Critical Role of Caregivers in Achieving Patient-Centered Care in the August 14, 2013 issue of JAMA. And, on Over 65, see Carol Levine's posts on caregiving here, here, and here.]
Jim Sabin, M.D., 75, is an organizer of Over 65, a clinical professor of population medicine and psychiatry at Harvard Medical School, and a Fellow of the Hastings Center.