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.
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
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
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
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."
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,
"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
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
So who's taking care of the Alzheimer's caregivers?
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.
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
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/>.▪