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Critical Diagnosis of Alzheimer's Delayed for Years
by Stigma and Denial
National survey finds longest delays when fear
manifested in caregiver
March 21, 2006 – The stigma and denial of the
developing symptoms of Alzheimer's disease delays treatment for more
than two years (28.7 months) on average. But, when this fear is
manifested in the caregiver, delay of diagnosis is even more severe,
averaging 6 years (71.4 months). These are findings in a new survey from
the Alzheimer's Foundation of America.
When it is the people with Alzheimer's disease that
are concerned about stigma, a diagnosis of Alzheimer's disease occurred
on average 3.5 years (40.1 months) after symptoms appear.
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In most cases, the length of time between first
symptoms and a diagnosis can be measured in terms of years, not months.
"Any delay in diagnosis is a setback for people
with Alzheimer's disease and their caregivers -- and a delay of two
years or more is a serious and unnecessary setback," said Eric J. Hall,
chief executive officer of the Alzheimer's Foundation of America.
A typical patient experiences symptoms for just
over 2 years (26.1 months) and visits several doctors (2.3 on average)
before receiving a diagnosis of Alzheimer’s disease.
● Over half (61%) of caregivers indicated that they
are at least partly responsible for the delay between the onset of
symptoms and the actual diagnosis. There is not a statistically
significant difference between the likelihood of males (66%) and females
(61%) to accept part of the responsibility.
The most-commonly cited reasons for a delay are
cited by both genders and typically cause a delay of 2 ½ years or more.
● Not knowing enough about the disease was a reason
for delay for a substantial minority of caregivers (40%). Caregivers
who cited this reason indicated a delay of 2 ½ years (29.6 months) on
average. Males (41%) and females (40%) are equally likely to cite this
reason.
● Their loved one’s resistance to visiting the
doctor was a reason for another substantial group (38%). Caregivers who
cited this as a reason reported a delay of 2 ¾ years (32.7 months) on
average. This reason is cited significantly more often by caregivers
for a parent (48%) than caregivers for a spouse (23%). There is not a
statistically significant difference in the likelihood of males (35%)
and females (40%) to cite this reason.
Several other secondary reasons may be cited more
often by one gender and typically cause a delay ranging from 1 ½ years
to 6 years.
The longest delay of all (roughly 6 years) is
associated with the caregiver’s own concern about the stigma of an
Alzheimer’s disease diagnosis. Among the relative few who mention this
barrier, it appears to have a powerful effect on how long the patient
waits to receive a diagnosis.
● A subset of caregivers (19%) did not want to face
the possibility that something could be wrong. This reason is cited
significantly more often by caregivers for a spouse (33%) than
caregivers for a parent (12%). Female caregivers (23%) are
significantly more likely than males (11%) to say that this was a
barrier. On average, caregivers who mentioned this barrier reported a
delay of 1 ½ years (18.2 months).
● A small minority of caregivers (11%) say that the
patient was concerned about the stigma of an Alzheimer’s diagnosis.
Male caregivers (17%) are significantly more likely than females (8%) to
say that the patient’s own concern about a stigma was an obstacle to
diagnosis. On average, respondents who mentioned this barrier reported
a delay of approximately 3 ½ years (40.1 months).
● For a few caregivers (9%), concern about
healthcare costs delayed the diagnosis. Male caregivers (18%) are
significantly more likely than females (4%) to express this concern.
This is associated with a delay of about 1 ½ years on average (19.4
months).
● Those relative few who indicated that their own
concern about a stigma was a reason for the delay (5%) reported a delay
of roughly 6 years (71.4 months) on average. Males (9%) were
significantly more likely than females (3%) to indicate that their own
concern about a stigma was the primary reason for the delay.
Overall, slightly more than half of caregivers
mention fear of stigma and/or denial as reasons for a delayed diagnosis,
including their own fear of stigma, the patient’s fear of stigma, the
patient not wanting to see the doctor, and/or the caregiver not wanting
to think something could be wrong with their loved one.
Caregivers in the stigma/denial group tend to share
certain demographic characteristics, although they are no more likely to
care for a parent than a spouse (or vice versa). Remarkably, they
appear to have largely overcome the fear of stigma/denial, and at
present may be more knowledgeable than other caregivers.
● Just over half of all caregivers (57%) mentioned
that fear of stigma and/or denial (including their own fear of stigma,
the patient’s fear of stigma, the patient not wanting to see the doctor,
and/or the caregiver not wanting to think something could be wrong with
their loved one) contributed to a delayed diagnosis. On average, these
caregivers’ loved ones waited 28.7 months to receive a diagnosis of
Alzheimer’s disease. Those mentioning their own and/or their loved one’s
fear of stigma (14% of total) report that their loved one waited 39.5
months on average to receive a diagnosis.
● Caregivers who mention stigma/denial are
significantly more likely to be female than male (60% vs. 51%), and are
younger on average (54.4 vs. 58.6). Caregivers for a parent versus
caregivers for a spouse are about equally likely to mention fear of
stigma/denial.
● Today, caregivers for whom stigma/denial delayed
the initial diagnosis appear to have made a dramatic turn-around in
their approach to caregiving. They are facing the disease head-on and
are informing themselves about treatment options for their loved one.
These caregivers are significantly more likely than others (72% vs. 59%)
to say that today, they are extremely/very knowledgeable about
Alzheimer’s disease. On average, they have heard of a significantly
greater number of medications by name (3.1 vs. 2.6). They are
significantly more likely to provide “quality of life” care for their
loved one (66% vs. 51%).
Lack of long-term care planning on the part of the
patient has an impact on the delay between symptoms and diagnosis. On
average, those without LTC planning wait significantly longer.
● On average, those without LTC planning wait over
a year longer for a diagnosis than those who made plans (31.5 vs. 20.1
months).
● Those who didn’t plan for long-term care may be
generally less inclined to face issues head-on and plan for the future
proactively. Those without plans are significantly more likely to
indicate that the patient did not want to visit the doctor (46% vs.
31%). Caregivers for a spouse who made no plans are significantly more
likely than others to say they did not want to face the possibility
something could be wrong (44% vs. 21%).
● Those whose loved one made plans may generally be
more conscious of the financial impact of long-term care. Not
surprisingly, they are significantly more likely than those without
plans to say that concerns about the cost of healthcare were a reason
for the delay (12% vs. 6%).
"While facing Alzheimer's disease is never easy,
getting a diagnosis is an essential step to managing and treating the
disease," added Hall. "Living with this in silence can isolate people
with Alzheimer's disease and their caregivers, leaving them without
critical support, resources, and proper treatment. We encourage everyone
touched by Alzheimer's disease to reach out for support -- help is out
there."
Families Feel Abandoned, Struggle with Caring
for Loved Ones on Their Own
Survey results also reveal a distinct generation
gap between caregivers of parents and caregivers of spouses with
Alzheimer's disease.
● Caregivers of parents are significantly more
likely than caregivers of spouses to say they now have less time for
themselves (74% vs. 56%) and have felt abandoned by family (34% vs.
14%).
● Caregivers of spouses confide in significantly
fewer sources of support than caregivers of parents (2.7 vs. 3.3 on
average), and are significantly less likely to say they would like more
help (52% vs. 77%).
● In addition, caregivers of spouses (33%) are
significantly more likely than caregivers of parents (12%) to indicate
that their own denial was an obstacle to diagnosis.
Many sibling relationships suffer under the stress
of caring for a parent with Alzheimer's disease and the division of
caregiving responsibilities.
● More than half of caregivers of parents, with
siblings (60%), report that they are the only one of their siblings
responsible for their parent's care.
● Many of these respondents report that
relationships with siblings deteriorated after a parent was diagnosed
(86% of siblings were somewhat or very close prior to diagnosis vs. 75%
post-diagnosis).
More Education, Support Needed
Sixty-nine percent of caregivers surveyed report
that they want more help from family and friends.
Caregivers indicate that more help in certain areas
could ease the caregiving strain, most notably –
● assistance with day-to-day caregiving activities (20%),
● more financial support (16%),
● more emotional support (15%) and
● more time for themselves (13%).
Caregivers of parents are significantly more likely
than caregivers of spouses to feel comfortable talking about the
condition with all of the people in their life (80% vs. 64%).
Caregivers overall are most likely to confide in
friends (58%), physicians/healthcare professionals (41%), children
(38%), spouses (35%), and siblings (33%).
Lack of knowledge about the disease is a barrier to
diagnosis for two in five caregivers surveyed (40%), suggesting that
more education is needed. While the majority (92%) of caregivers report
that they are aware of medications that may slow the progression of
symptoms, only half (51%) of caregivers surveyed are aware of the
opportunity for combination therapy.
"If you notice memory problems or any other
possible warning signs, such as agitation, restlessness, disorientation,
or difficulty performing regular tasks, make an appointment with your
doctor," said Beth Safirstein, M.D., co- president/medical director and
practicing physician at the MD Clinical/MD Clinical Trials Foundation,
Inc., Hallandale Beach, FL.
"Diagnosis and treatment are essential because
there are treatments available, including combination therapy, that have
shown to potentially help maintain a person's ability to think clearly
and perform everyday tasks for a longer period of time than if left
untreated."
Caregivers Emerge Stronger, More Compassionate
Remarkably, many caregivers who mentioned fear of
stigma and/or denial as a reason for delay in diagnosis appear to have
largely overcome their fear and are more likely than those who did not
struggle with stigma and denial to say they are extremely or very
knowledgeable about Alzheimer's disease (72% vs. 59%).
Moreover, the majority of caregivers surveyed
report finding new, positive qualities in themselves during the process
of caregiving:
● roughly two-thirds (64%) of caregivers report they have become a
more compassionate person since caring for a loved one with Alzheimer's:
● 76 percent of caregivers state they have learned that they are
stronger than they thought since caring for someone with the disease.
The survey was conducted by Harris Interactive on
behalf of AFA, a national nonprofit organization providing care and
services to individuals with Alzheimer's disease and related dementias,
and their families.
Primary topics covered in this survey include:
● Obstacles that may have delayed getting a
diagnosis of Alzheimer’s disease
● Impact of caregiving responsibilities on the caregiver’s own family
and life
● What could help to ease the burden of the responsibilities associated
with caregiving
● Impact of the patient’s long-term care planning, or lack thereof, on
the burden associated with caregiving
● The responsibilities associated with caregiving, and how, if at all,
these vary according to caregiver gender and/or birth order
Additional survey findings can be found at
www.alzfdn.org.
About the Survey
The I CAN: Investigating Caregivers' Attitudes and
Needs survey examined the perceptions and feelings of caregivers of
people with Alzheimer's disease. The survey is based on interviews with
a nationwide cross section of 539 U.S. adults (aged 18+) who are
caregivers - currently caring for a loved one with Alzheimer's disease -
conducted online within the United States by Harris Interactive from
January 30 to February 8, 2006, for the Alzheimer's Foundation of
America (AFA) and sponsored by Forest Pharmaceuticals, Inc.
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 ten 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.
About the Alzheimer's Foundation of America
The Alzheimer's Foundation of America (AFA) 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 www.alzfdn.org.
About Harris Interactive(R)
Harris Interactive Inc. (www.harrisinteractive.com),
based in Rochester, New York, is the 13th largest and the
fastest-growing market research firm in the world, most widely known for
The Harris Poll(R) and for its pioneering leadership in the online
market research industry. Long recognized by its clients for delivering
insights that enable confident business decisions, the company blends
the science of innovative research with the art of strategic consulting
to deliver knowledge that leads to measurable and enduring value.
Harris Interactive serves clients worldwide through
its United States, Europe (www.harrisinteractive.com/europe) and Asia
offices, its wholly-owned subsidiary Novatris in Paris, France (www.novatris.com),
and through an independent global network of affiliate market research
companies.
Source: Alzheimer's Foundation of America
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