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Alzheimer's, Dementia & Mental Health
African-American, Hispanic Caregivers Too Often
Dismiss Alzheimer's as 'Old Age'
Survey finds misperceptions, late diagnosis among
these minorities
 March
14, 2007 - African-American and Hispanic, who care for a loved one
with Alzheimer's disease are significantly more likely than caregivers
of other races to consider the disease a normal part of the aging
process and dismiss its symptoms as part of getting older, according to
the Alzheimer's Foundation of America's (AFA) second ICAN: Investigating
Caregivers' Attitudes and Needs survey. This gap in understanding sheds
light on the reasons for delay in diagnosis and treatment, which is an
unnecessary setback for caregivers and individuals with the disease
alike, says AFA.
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Alzheimer's, Dementia & Mental Health |
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"Facing Alzheimer's disease is never easy, but
getting a diagnosis and taking advantage of support services are crucial
steps to treating and managing the disease," said Eric J. Hall, Chief
Executive Officer of the Alzheimer's Foundation of America. "We
encourage everyone touched by Alzheimer's disease to reach out for
assistance - help is out there."
The survey was conducted by Harris Interactive(R)
on behalf of AFA, a national nonprofit organization providing care and
services to individuals with Alzheimer's disease and related dementias,
and their families.
According to the survey released today,
African-American and Hispanic caregivers surveyed were significantly
more likely (37% versus 33%) than caregivers of other races (23%) to
believe that Alzheimer's disease is a normal part of the aging process.
In fact, Alzheimer's disease is a progressive, neurodegenerative
illness.
Compounding the problem, African-American (70%) and
Hispanic (67%) caregivers were also significantly more likely to dismiss
the symptoms of Alzheimer's disease as old age than other respondents of
other races (53%).
Additionally, African-American (67%) and Hispanic
(63%) caregivers were significantly more likely to report that they did
not know enough about the disease to recognize the symptoms compared to
caregivers of other races (49%).
The survey also found that African-American (33%)
and Hispanic (26%) caregivers were also more likely than caregivers of
other races (12%) to recognize that they are at a higher risk for
Alzheimer's disease.
"Alzheimer's disease is a devastating illness that
is by no means a normal part of aging," explained Warachal E. Faison,
M.D., Assistant Director of the Institute for Research Minority Training
on Mental Health and Aging, and Clinical Director of the Alzheimer's
Research and Clinical Programs at the Medical University of South
Carolina.
"My deep concern is that caregivers who consider
the disease normal and don't know how to recognize its symptoms are not
going to be able to make the best healthcare decisions for their loved
ones with the disease and themselves as caregivers. The fact is, it's
crucial for caregivers to be able to identify symptoms and bring their
loved one to a doctor without delay for proper diagnosis and treatment."
Stigma Can Delay Diagnosis, While Ethnic
Barriers May Not
Based on caregivers' responses, on average those
they cared for with Alzheimer's typically experienced symptoms for 31
months before receiving a diagnosis.
While not associating symptoms with Alzheimer's
disease can be a cause for a delay in diagnosis, concern about stigma
associated with the disease can also play a role. About one-third (33%)
of overall respondents reported that their loved one's concern about
stigma delayed diagnosis, while about a quarter (26%) indicated that
their own concern about stigma was a reason for the delay, the survey
found.
African-American caregivers were significantly more
concerned about stigma (36%) than Hispanic (22%) and other race (18%)
caregivers.
Other reasons for the delay in diagnosis included
not wanting to face the possibility of something being wrong, fear of
the responsibility of caregiving, not being offered a memory screening,
and resistance in visiting a doctor.
The survey indicated that respondents, regardless
of their ethnic background, did not blame the delay in diagnosis on
ethnic barriers.
Attitudes Differ On Placing A Loved One In A
Skilled Nursing Facility
Despite the role that assisted living facilities
and nursing homes play in the continuum of care for people with
Alzheimer's disease, the survey also revealed that significant
proportions of African-American and Hispanic caregivers don't consider
them an option.
Among caregivers surveyed whose loved one is not
currently living in an assisted living facility or nursing home, other
race caregivers (32%) were nearly twice as likely to think that placing
their loved one in a facility is an option in the future compared to
African-American (19%) and Hispanic (21%) caregivers.
Overall, caregivers who will not place their loved
one in a facility felt that it is their responsibility to take care of
their loved one (85%) or said they would feel guilty (60%).
Religion/Spirituality Have Significant Impact on
Decision-Making, Support
Religion and spirituality tend to play an important
role in the lives of caregivers, from seeking support to making
healthcare decisions. The survey found that respondents who are
religious are more likely to turn to religious leaders for support and
let their religion influence their healthcare decisions than
non-religious respondents (73% versus 31%).
However, nearly two-thirds (63%) of non-religious
respondents said that their spiritual beliefs have a significant impact
on their healthcare decisions. The caregiving journey also made both
religious and non-religious respondents feel more religious (36%), with
African-American (48%) and Hispanic (35%) caregivers much more likely to
feel this way than other race (26%) caregivers.
A majority of respondents overall did not feel they
needed more or better support from their religious leaders, while about
a third indicated they could have used more support from them.
African-American caregivers (46%) were more likely
to express that they could have used more support from their religious
leaders, compared to Hispanic (36%) and other (23%) caregivers.
Support Groups are Most Popular among
African-American and Hispanic Caregivers
African-American and Hispanic caregivers rely
heavily on support groups. In fact, among those surveyed,
African-American (47%) and Hispanic (50%) caregivers were significantly
more likely to currently use a support group than other race caregivers
(29%).
Yet only around half of African-American
respondents and a little more than one-third of Hispanic respondents
said that they felt the support groups they were able to access were
appropriate to their specific religious or ethnic background.
Interestingly, religious respondents overall were more likely to have
access to a support group than non-religious respondents (47% versus
36%).
The survey also found that a majority of caregivers
-- African Americans in particular -- wished they had more emotional
support from friends and family as well as knowledge and direction from
healthcare professionals.
At diagnosis, caregivers overall wished they had
received more information about Alzheimer's disease (75%) and treatment
options (75%); African-American caregivers (83%) surveyed were
significantly more likely than Hispanic (73%) and other (68%) caregivers
to wish they had received more information.
Majority of Caregivers Unaware of Combination
Therapy
When it comes to treatment, a majority of
caregivers surveyed overall were not currently aware of combination
therapy (67%). Combination therapy describes treatment combining
medication from the two classes of Alzheimer's disease drugs currently
approved by the FDA. African-American (26%) and Hispanic (32%)
caregivers were less likely than other race (38%) caregivers to be aware
of combination therapy.
Additional key survey findings can be found at
www.alzfdn.org.
About Alzheimer's Disease
Alzheimer's disease is a progressive, degenerative
disorder that attacks the brain's nerve cells, resulting in loss of
memory, thinking and language skills, and behavioral changes. An
estimated one in 10 persons over age 65 and nearly half of those 85 or
older have Alzheimer's disease. Alzheimer's disease currently strikes
approximately five million Americans; published reports project that by
2050 this number could more than triple to more than 16 million people
in the United States.
Alzheimer's disease occurs significantly more
frequently among African American (10.5%) and Hispanic (9.8%)
individuals than among Caucasian (5.4%) individuals. Moreover, the
proportion of African American and Hispanic individuals reaching ages
65+ in the U.S. is increasing more rapidly than the proportion of
Caucasian individuals.(2)
Symptoms of moderate Alzheimer's disease can
include difficulty identifying familiar people, places, or things,
restlessness, sleep disturbances, poor judgment or difficulty with
reasoning, aggression or agitation, inappropriate behavior, increased
difficulty with everyday activities, losing touch with reality,
suspiciousness or paranoia, and hallucinations.
About The Survey
This second ICAN: Investigating Caregivers'
Attitudes and Needs survey was conducted by telephone within the United
States for the Alzheimer's Foundation of America (AFA) and sponsored by
Forest Pharmaceuticals, Inc between January 9 and February 6, 2007 among
655 adults (aged 18 and over) who are caregivers currently caring for a
loved one with Alzheimer's disease. Among those, there are Hispanic
(150), African American (252) and other races (253) caregivers. The
survey focused on three groups of caregivers: African Americans,
Hispanics, and Other Races. The Other Race caregivers is comprised of
Whites, Asian/Pacific Islanders, Native American or Alaskan natives,
those of mixed racial backgrounds, and those identifying themselves as
"other." Data were not weighted and therefore results can only be
reflected to the samples surveyed.
About The Alzheimer's Foundation of America
The Alzheimer's Foundation of America is a national
nonprofit organization that focuses on providing optimal care to
individuals with Alzheimer's disease and related illnesses, and their
families. Based in New York, AFA unites hundreds of member organizations
that provide hands-on support services. AFA's services include a
toll-free hotline staffed by licensed social workers, educational
materials, a free magazine for caregivers, a national memory screening
initiative, and training for healthcare professionals. For more
information, call (toll-free) 866-AFA-8484 or visit
http://www.alzfdn.org/
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