Dementia itself is not a disease, but rather a set of symptoms
that accompany specific diseases. Dementia is a general
term for the loss of memory, language and recognition that is
severe enough to interfere with everyday life. Researchers
believe dementia may be caused by a combination of genetic and
environmental factors. Some diseases that cause dementia are
irreversible and include Huntington’s disease, Pick’s disease,
Parkinson’s disease, Lewy body dementia, multi-infarct dementia
and Alzheimer’s disease (AD), the most common form of dementia,
accounting for 60-70% of the diagnosed cases.
An estimated 4.5 million people in the United States have
dementia. On average, patients with AD live from 8 to 10 years
after they are diagnosed, although the disease can last up to 20
years. The disease usually begins after age 60 and the risk
increases with age. Younger people may get AD; however, it is
much less common. Ten percent (10%) of Americans age 65 and
older have AD and it affects fifty percent (50%) of Americans
age 85 and older. AD is one of the most feared mental disorders
because of its progressive and relentless attack on the brain.
Despite its prevalence, dementia may go unrecognized or be
misdiagnosed in the early stages of the disease.
According to the Alzheimer’s Association and current national
studies, there are many reasons to support the early detection
of AD. An early diagnosis is crucial because that is when
the most can be done to slow the progression of symptoms. In
addition, early treatment can have a considerable effect on
maintaining a patient’s current level of functioning. An early
and accurate diagnosis can also help to identify reversible
conditions that may mimic dementia such as depression,
medication side effects, substance abuse, vitamin deficiencies,
dehydration, bladder infections or thyroid problems. An initial
assessment can avoid the trauma of a diagnosis of dementia where
it does not exist. It also prevents unnecessary and possibly
harmful treatment resulting from misdiagnosis. Other
reasons include:
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Identifying the cause of dementia leads to proper care and
allows patients a greater chance of benefiting from existing
treatments
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Early diagnosis can help resolve the anxiety that
accompanies noticeable, yet unexplainable changes in
behavior
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Educating persons with dementia and their caregivers gives
them time to develop advanced care planning
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The quality of life for both the patient with AD and the
family can be maximized.
The earlier the treatment, the better the chance of a favorable
response to treatment, the longer the delay of progressive
symptoms and the less financial cost overall. The early
identification process, currently recommended by the Chronic
Care Network for Alzheimer’s Disease, includes two key tools to
identify people who may have dementia.
Tool 1: Education and Awareness Materials which recommend
the use of triggers that signal possible dementia and include
the Ten Warning Signs of Alzheimer’s Disease.
Tool 2: Family Questionnaire which aims to collect data
from family members who are often the best historians and are
more likely to be aware of the signs and symptoms (of possible
dementia) that are not apparent to the medical staff.
The Ten Warning Signs of Alzheimer’s Disease
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Memory Loss
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Difficulty Performing Familiar Tasks
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Problems with Language
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Disorientation to Time and Place
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Poor or Decreased Judgment
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Problems with Abstract Thinking
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Misplacing Things
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Changes in Mood or Behavior
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Changes in Personality
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Loss of Initiative/Motivation
If you recognize any warning signs in yourself or a loved one,
the Alzheimer’s Association recommends consulting a physician
for a complete assessment. Early diagnosis of Alzheimer’s
disease or other disorders causing dementia is an important step
to getting appropriate treatment, care and support services.
The Family Questionnaire is designed to help identify patients
with memory problems that might go unnoticed by clinicians. It
consists of five simple questions:
In your opinion, does your loved one have problems with any of
the following challenges and how often?
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Repeating or asking the same thing over and over?
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Remembering appointments, family occasions, holidays?
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Writing checks, paying bills, and balancing the checkbook?
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Deciding what groceries or clothes to buy?
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Taking medications according to instructions?
The information collected from these tools can be shared with
the patient’s primary care physician and then a determination of
need for further testing or a referral to a specialist can be
made at that time.
Testing:
There is no single diagnostic test to detect whether a person
has Alzheimer’s disease. However, diagnostic tools and
criteria have been developed in recent years to make a clinical
diagnosis of AD with an accuracy rate of 85-90%. The factors
used to complete a diagnosis include:
The assessment of AD might begin with a memory screening test in
the primary care physician’s office and then the patient may be
referred to a neurologist, neuropsychologist, a geriatric
psychiatrist or other specialist trained in the diagnosis of AD
for further testing. Caregivers and family members are
essential to the process of diagnosing early-stage Alzheimer’s
disease. They may be able to supply valuable information and
validate or deny the patient’s own reports.
A diagnosis of Alzheimer’s disease usually falls into one of
three categories:
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Probable Alzheimer’s— indicates a physician has ruled out
all other disorders that may be causing the dementia.
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Possible Alzheimer’s— indicates the presence of another
disorder that could be affecting the understood progression
of Alzheimer’s. The disease process appears different than
what is normally seen; yet Alzheimer’s disease is still
considered the primary cause of dementia symptoms.
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Definite Alzheimer’s— this diagnosis can only be made at the
time of an autopsy because it requires examination of actual
brain tissue. An autopsy can confirm the presence of senile
plaques and neurofibrillary tangles in the brain, which are
the characteristic lesions of Alzheimer’s, to diagnose the
disease with 100% accuracy.
Delay of Diagnosis:
Amazingly enough, there is a significant percentage of
caregivers who are told, upon bringing their spouse or relative
to the physician, that their decline is due to ‘normal aging.’
We now know that dementia is not a normal part of the aging
process.
It is strongly recommended that persons experiencing any
dementia-type symptoms should undergo diagnostic testing as soon
as possible. A delay in diagnosis allows for a missed
opportunity for treating the patient and also increases the
chances for other problems and demands to multiply for the
caregiver. For example, since AD affects memory, patients are at
risk of not complying with the treatments that are necessary for
problems such as diabetes, high blood pressure, mental health
disorders and infections. A health crisis can then
develop, compound the effects of dementia and lead to emergency
care or hospitalization.
Caregivers may initially hesitate to bring a loved one with
dementia to the physician. Researchers at the University
of Portland found that it takes an average of 30 months from the
time family members notice the first changes and symptoms of
dementia for the person to be diagnosed with AD. Reasons cited
by caregivers were: lack of knowledge about AD, they did not
imagine that the changing behavior was part of an illness, they
were unsure what type of doctor to see or how to describe
symptoms, they felt overwhelmed with the burden of caregiving or
they feared that the illness was truly AD. Many caregivers have
reported that prior to the diagnosis, they were nearly overcome
with anxiety as they watched their loved one deteriorate. Once
the diagnosis was made, they felt a great sense of relief and
were finally able to name the disease and move forward toward a
plan of care.
There are several other reasons that contribute to a delayed
diagnosis of AD. Early symptoms are often disregarded,
mistakenly attributed to aging or even misdiagnosed.
Sometimes people with dementia are unwilling to have their
mental abilities evaluated, are defensive, or in denial of the
changes that are occurring in their lives. Physicians may
not feel comfortable dealing with memory loss issues, may not be
trained to administer cognitive tests or are reluctant to place
a patient in an uncomfortable testing situation. Patients with
high intelligence may be able to score above average on
screening tests (despite cognitive decline) and compensate for
or even mask their symptoms during the office examination, thus
leaving the physician without sufficient evidence to provide a
diagnosis. This is the point where caregivers play an important
role and can provide the most valuable data to support the
possible diagnosis of Alzheimer’s disease.
Treatments and Medication Benefits:
Although there is no cure for
AD, new and improved treatments are on the horizon and offer hope.
Most health professionals feel that the best plan of treatment
includes a combination of medication, changes in lifestyle and
support, along with a goal of managing symptoms that affect memory,
thinking and behavior. The regional director of the Alzheimer’s
Association of Minnesota-North Dakota points out that there is a
growing interest in the use of non-medical interventions that may be
effective on their own or used in combination with medications.
These interventions may include memory and communication aids,
speech therapy, behavioral therapies, memory stimulation therapy,
exercise, adequate sleep and education. The environment also
strongly influences the health and capabilities of persons with AD;
thus, it is important for caregivers to pay attention to safety
factors, reduce stimuli and adjust the surroundings to accommodate
the disease.
AD changes the brain in many ways, which results in a decrease of
acetylcholine levels. It is believed that acetylcholine is a
chemical messenger that is important for memory, thought and
judgment. The US Food and Drug Administration currently approves
five prescription drugs, yet only three are actively marketed for
the treatment of mild to moderate AD. According to Mayo Clinic,
these medications are referred to as cholinesterase
(ko-lin-ES-tur-ase) inhibitors and seem to improve the effectiveness
of acetylcholine either by increasing the amount in the brain or
strengthening the way nerve cells respond to it. The top three
cholinesterase inhibitors are Aricept, Razadyne and Exelon. They
have all been effective treatment options in clinical trials. The
other two medications are: Cognex, which has been on the market
since 1993 but is rarely prescribed, and Namenda, which is the first
drug approved by the FDA to treat moderate to severe dementia and
may be co-prescribed with cholinesterase inhibitors. Treatment with
medications has revealed delays in nursing home placements and
improvements in cognition and functional abilities in many patients
with AD.
Doctors usually start patients on a low dosage of medication and
then gradually increase the dosage based on the tolerance level of
the patient. According to a journal of the American Academy of
Family Physicians, the above named medications have a low incidence
of serious reactions but they do have common side effects that can
occur such as nausea, vomiting, diarrhea or weight loss.
Tolerance to these medications often develops over time.
Cholinesterase inhibitors must be taken regularly and in a
sufficient dosage to benefit the patient. Interruptions of the drug
treatment over time will result in sustained or irreversible
cognitive decline. If a patient is unlikely to follow a drug regimen
or has an illness that could interrupt the drug regimen, benefits
will decrease and patients may face greater side effects. The
healthcare provider should consult with the patient and the family
to decide together on the best plan of treatment. Pharmacists are
also a valuable resource for medication information.
It is important to understand that medication alone cannot stop the
disease and medications do not work for everyone. For those who are
helped, the effects may be only modest or temporary. Treatment with
medication may help prevent symptoms such as depression,
sleeplessness or wandering from becoming worse for a period of time
and can help keep behavioral symptoms under control. Periodic
monitoring and testing of a patient’s functional and cognitive
abilities is also recommended. These results may offer
encouragement to the patient’s family and can serve as a guide for
doctors, patients and families in planning for the future.
Clinical Trials:
The best evidence of progress in AD research lies in the growth of
clinical testing of treatments, prevention of the disease and
diagnosis. This alone gives patients and families a reason to hope.
Advances in our knowledge and understanding of AD have also led to
the development of many new drugs, diagnostic tests and treatment
plans. Scientists now recognize the need for earlier detection of AD
and are devising new brain imaging techniques and lab tests that
could improve diagnosis. One landmark trial that began in 2005 is
the Alzheimer’s Disease Neuroimaging Initiative. The goal of this
trial is to determine whether standardized brain images combined
with laboratory and psychological tests may offer a better way to
identify those at risk for Alzheimer’s, track disease progression
and monitor treatment effects.
Clinical trials are the final testing ground for new treatments that
are currently under investigation. Each trial represents the results
of years of scientific thought, observation, and data analysis and
is only possible through the participation of patients and their
family members. Clinical trials are the principal way that
researchers can discover whether a treatment is safe and effective
for patients, especially for those in the early stages of the
disease. Trials take place at private research facilities,
specialized AD research centers, teaching hospitals and even at
physicians’ offices. Taking part in a clinical trial can be a big
step for both the patient and the family so it’s necessary to
discuss the expectations and pros and cons of participation with the
clinical trials staff.
There are two kinds of drug trials available:
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Treatment trials with existing drugs that assess whether an
already approved drug may be useful for other purposes. For
example, an arthritis treatment may help in the prevention of
AD.
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Treatment trials with experimental drugs or approaches to
discover whether a new drug or treatment approach may help
improve memory function, decrease symptoms, slow the progression
of AD or prevent it altogether. Each one of these clinical
trials includes up to three phases. Once these phases are
complete and investigators are satisfied that the treatment is
safe and effective, the research team can submit its results to
the Food and Drug Administration (FDA) for review.
When a person signs up for a clinical trial, they are asked to sign
an informed consent form to ensure that they are protected and well
cared for during the study. If a participant is unable to provide
informed consent because of memory loss, it is still possible for an
authorized representative (usually a member of the family) to give
permission. Next, patients go through a process of screening to see
if they qualify and can safely participate before they proceed with
the study. Although clinical trials may not produce miraculous
results, many participants believe that even if the benefit to them
is small, they are making a valuable contribution toward future
research. Family members have also found that the best benefit
of participating in a clinical trial is the regular contact with the
research team. The team can be a link to education, provide
advice on the emotional and physical aspects of AD, and offer
supportive and helpful information.
The amount and variety of clinical trials underway are a sign of the
intensity of research to seek solutions for a disease that robs the
mind and takes away the essence of a person’s life. Current clinical
trials are available on the Internet under www.alz.org or by
contacting the Alzheimer’s Association or the Alzheimer’s Disease
Education and Referral Center (ADEAR) at 1-800-438-4380 (a service
of the National Institute on Aging).
Caring for a person with AD can be likened to driving on an
unfamiliar road, riding a roller coaster or even walking on a
tightrope. It can be an incredibly stressful ride, yet rewards can
also be visible. The key is to balance your own needs against those
of the person you are caring for day to day. Many caregivers find
that they are stronger than they ever thought possible and that they
feel rewarded knowing they have stayed committed to helping a loved
one during the difficult years.
Caregiving can produce a great deal of stress that can lead to
physical decline and emotional exhaustion. The health of caregivers
is at risk, yet they often become the ‘hidden patients’ while
focusing all of their attention on the person with AD. Caregivers
need to keep their own health in check and visit their doctor on a
regular basis. Support systems must also be alert to signs of
caregiver burnout or depression and plans must be made to provide
respite to the caregiver. No one can do it all alone. It is
heartbreaking to watch a loved one go through the stages of
Alzheimer’s disease and caring for them requires an abundance of
courage and strength. Asking for help and taking care of
yourself cannot be overemphasized.
The Alzheimer’s Association assistance is available nationwide and
offers a wide variety of programs, educational materials and support
services to persons with AD and their caregivers. Many communities
have a local or regional chapter and offer regular education and
support group meetings. The Alzheimer’s Association also provides:
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A 24-hour, tollfree (multilingual) Information Helpline (800)
272-3900 that links callers to information about AD, treatments,
caregiving strategies and local programs.
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The nation’s largest Alzheimer’s library including books,
journals, cassettes, videos and CDs that can be obtained through
interlibrary loans at your local library.
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Internet support at www.alz.org, including online chat rooms,
research updates, brain health tips, the new CareFinder program
that assists caregivers in planning care and finding support and
the Safe Return program, which helps families locate a loved one
who has wandered off or gotten lost. This Internet site is
set up to help families and caregivers make informed decisions.
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Care Consultation— one of the core services of the Alzheimer’s
Association (available in most states) that assists the person
with AD or related dementias and their family in planning for,
and dealing with, all aspects of the illness experience.
In addition to contacting the Alzheimer’s Association, consider care
options such as in-home respite care, adult day programs, home care
services, delivered meals programs, or chore services. Keep a
personal journal of your journey or a medical journal to record
helpful information for yourself and the physician. Continue with
activities that are enjoyed. Maintain a network of support and
communicate your needs to family members, friends, volunteers, and
organizations to avoid isolation. Join a caregiver support group to
find hope, gain valuable information from people who understand your
position and learn new ways to cope with the challenges you face.
Alzheimer’s disease impacts the whole family. Like a pebble thrown
into the water, the ripples of the disease touch the lives of
everyone. The signs and symptoms of AD can’t be ignored! Early
detection and current treatments can help maintain or even improve
memory, thinking and behavior problems plus support the quality of
life for persons with AD and their caregivers.
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