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Clinical and Research News
MH Stressors Debilitating in Alzheimer's Caregivers
Psychiatric News
Volume 43 Number 3 page 22-35

Last November 8 Janet Farr of Chagrin Falls, completed an odyssey that few Americans would envy. For 13 years—right up till his death—she had cared for her husband, Herb, who had Alzheimer's disease.

It was a journey that she had undertaken willingly and that had its bright spots, she said. For instance, she would tuck Herb into bed every night, and he would say, "Thank you. It's been a good day." And he would tell her that she was perfect. "I'm glad he no longer remembered the truth!" she chuckled.

But the voyage also had its difficulties—like taking an early retirement so that she could look after him full time. "I gradually became his eyes and ears for many tasks," she said.

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Janet Farr with her husband, Herb, and their poodle, Edith. Janet cared for Herb during the 13 years that he had Alzheimer's—in fact, up to his death on November 8, 2007. Edith, who was trained to be an Alzheimer service dog, helped care for Herb as well. 

Credit: Janet Farr

The journey that Farr took is hardly the road less traveled in America today. More than 4 million middle-aged to older Americans are estimated to have this debilitating, and ultimately deadly disease, and three-fourths of them are estimated to be cared for by family members.

The typical caregiver of a person who has this disease is 48 years old and female, according to a study conducted by the National Alliance for Caregiving and the Alzheimer's Association. The study was reported at a recent press conference on the value of early Alzheimer's screening by Gail Hunt, president of the National Alliance for Caregiving. Forty-one percent of Alzheimer's caregivers are men, the study also revealed.FIG1

As Constantine Lyketsos, M.D., chair of psychiatry at Johns Hopkins Bayview Medical Center and a geriatric psychiatrist, pointed out during an interview," If you are 80 or older, you have a 1-in-3 chance of having Alzheimer's or a related condition and also a 1-in-3 chance of being a caregiver of someone with Alzheimer's."

Whatever their age or gender, caregivers can face numerous and daunting challenges.

One is that caregiving can be extremely time consuming and physically and mentally draining. It can be so overwhelming, in fact, that some 14 percent of caregivers who were in the workforce in the earlier stages of their loved one's disease eventually gave up their jobs to take care of the person full time, according to the study. Janet Farr is a good example.

The study found that one of the most pressing challenges that many Alzheimer's caregivers face is dealing with their loved one's difficult behaviors. "Denise," whose husband Chuck has Alzheimer's, would certainly concur. Recently, Chuck managed to leave their house, walk to a local car dealer, switch on the ignition in one of the cars, and drive away.

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The obstacles that Alzheimer's caregivers face also depend on the stage of illness, Lyketsos reported. "In the earlier stages the caregiver typically struggles with issues of independence. Patients might be on the margin of whether they can drive, whether they can take care of the home or shop, whether they can manage finances, and whether they can follow medication regimens. Caregivers typically have to supervise. In the middle stages caregivers start struggling with becoming the major decision makers while at the same time having to supervise more daily activities—bathing, grooming, clothing selection, and so on. In later stages caregivers have to take on more of these tasks. That often involves helping them bathe, dress, get up and down steps, and so on. And all through the middle and later stages, caregivers struggle with providing activities for patients. Many patients, if left to their own devices, won't do much."

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There is likewise a "tremendous financial impact," Peter Rabins, M.D., a professor of psychiatry at Johns Hopkins Medical Institutions and chair of APA's Committee on Long-Term Care and Treatment of the Elderly, pointed out.

"A lot of the care that people need is not covered by any insurance. And even today, many people still believe that nursing home care or assisted living or even day care is covered by Medicare. In fact, none of them is. That often comes as a big shock to families.

"And then there are huge societal costs. Being a caregiver often interferes with the whole social fabric of a person's life... going to lunch with friends, going to book clubs, having a cup of coffee with friends, chatting on the phone. The person starts to become very isolated socially."

The mental health fallout from all these stressors can be, not surprisingly, debilitating to the caregiver, even deadly (Psychiatrists Should Expect to See More Caregivers Seeking Treatment).

"I took care of one Alzheimer's caregiver who to this day takes care of her mother at home," Nhi-Ha Trinh, M.D., a clinical researcher at Massachusetts General Hospital and a member of APA's Committee on Long-Term Care of the Elderly, said. "She came to me in the outpatient clinic complaining of depression. She really struggled with both wanting to care for her mother and to do the right thing by her, but also to have her own independent life. I've also had contact with other Alzheimer's caregivers as well who come in very depressed and distraught."

Indeed, the rates of depression and demoralization are about three times higher in Alzheimer's caregivers than in similar people who are not caregivers, Rabins said. "So there is a huge emotional impact." In fact, even when people care for loved ones in the early, mild-cognitive-impairment phase of Alzheimer's, a quarter of caregivers experience depression, according to a study in the August/September 2007 American Journal of Alzheimer's Disease & Other Dementias.

Depression can also erode the physical health of Alzheimer's caregivers, a study in the July 2007 Canadian Journal of Psychiatry showed. Some 200 Canadian Alzheimer's caregivers were assessed at the start of the study and again five years later to see whether they were depressed. Their physical health was also evaluated at the start of the study, five years later, and then five years after that. The researchers found that the physical health of all caregivers tended to decline over time, but the physical health of those who were depressed at one or two time points plummeted even more.

As a matter of fact, it looks as if the depression experienced by many Alzheimer's caregivers, or at least the chronic stress imposed on many of them, can unleash a premature death.

A study in the September 2007 Journal of Immunology reported that 41 Alzheimer's caregivers were compared with 41 matched controls on depression, immune-cell function, and immune-cell aging. Depressive symptoms and immune-cell aging were significantly greater, and immune-cell function was significantly more impaired, in caregivers than in controls.

In another study, reported in the February 16, 2006, New England Journal of Medicine, over half a million couples aged 65 or older were followed during the subsequent nine years to see which ones were hospitalized and which ones died. The researchers found an association between subjects' hospitalization and their spouses' risk of death during the subsequent year. Among male subjects, for example, 6 percent died within a year after a spouse's hospitalization for colon cancer, 8 percent died within a year after a spouse's hospitalization for psychiatric illness, and 9 percent died within a year after a spouse's hospitalization for dementia.

Truly, "Alzheimer's caregivers have higher rates of psychological distress, physical health problems, and mortality than pretty much all other caregivers except for those caring for heart disease patients," Lyketsos said.

So who's taking care of the Alzheimer's caregivers?

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As Herb Farr's Alzheimer's progressed, and he tended to wander off and get lost, his wife thought that perhaps an Alzheimer's service dog would be the answer. However, she learned that there was a two-year waiting list to purchase such dogs. So she decided to buy a golden poodle—the recommended dog for helping Alzheimer's patients—and hire a trainer. The trainer trained the poodle to bring Herb home wherever he was and thus gave Janet some peace of mind.

The Alzheimer's Association also helps caregivers, Beth Kallmyer, director of client service at the national association, and Lisa Peterson, program director of the Greater Maryland Chapter of the Alzheimer's Association, told Psychiatric News. For example, local association chapters offer support groups for Alzheimer's caregivers, and some are even specialized—say, for Hispanic caregivers or for gay or lesbian caregivers. Local chapters can also refer caregivers to in-home aides and local day care centers tailored to caring for people with Alzheimer's.

Religious beliefs and practices may likewise buoy Alzheimer's caregivers, a study reported in the April 2007 American Journal of Geriatric Psychiatry suggested. In fact, support groups in church settings can especially help Hispanic Alzheimer's caregivers, Yanira Cruz, Ph.D., president of the National Hispanic Council on Aging, reported at the recent press conference on early screening for Alzheimer's.

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Lyketsos and his colleagues plan to launch the Johns Hopkins Memory and Alzheimer's Treatment Center this spring. "It is going to be one of the first very large, interdisciplinary programs in the United States devoted to the care of people with Alzheimer's in the community and for their caregivers," Lyketsos said.

Richard Schulz, Ph.D., a professor of psychiatry at the University of Pittsburgh, and his coworkers tested an intervention tailored to improve Alzheimer caregivers' quality of life and reduce the likelihood that they would develop depression. It was called Resources for Enhancing A lzheimer's Caregiver Health II (REACH II). Schulz and his group found that it was effective across a range of racial and ethnic groups (Psychiatric News, January 5, 2007).

"A number of applications of the REACH II intervention are currently under way," said Schulz. "For example, Sara Czaja, Ph.D., a professor of psychiatry at the University of Miami, is implementing an adaptation and extension of REACH II with Haitian-American caregivers of Alzheimer's patients."

Actually, Czaja said in an interview, she and her colleagues are starting to test the intervention not just with Haitian-American caregivers, but also with Hispanic-American and African-American ones. And they are using videophones for the intervention as well. The way it works, she explained, is that a videophone is placed in the home of each caregiver getting the intervention. Individualized counseling sessions are then delivered to the caregivers via the videophones.

"We hope that the study will show that the intervention is both feasible and effective," she said. "We foresee that it could be applied in a number of medical centers or community health care settings around the United States, and that it would be especially helpful for caregivers in rural locations."

Such help will arrive none too soon, it appears. During the next 20 to 30 years, Lyketsos predicted, there will be some 9 million more Alzheimer's patients in the United States than there are currently.

More information on this subject can be found on the Web sites of the Alzheimer's Association at<www.alzinfo.org/index.asp> and the National Alliance for Caregiving at<www.caregiving.org/>.

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Janet Farr with her husband, Herb, and their poodle, Edith. Janet cared for Herb during the 13 years that he had Alzheimer's—in fact, up to his death on November 8, 2007. Edith, who was trained to be an Alzheimer service dog, helped care for Herb as well. 

Credit: Janet Farr

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