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 percent 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:
- Identifying the cause of dementia leads to
proper care and allows patients a greater chance
of benefiting from existing treatments
- Early diagnosis can help resolve the anxiety
that accompanies noticeable, yet unexplainable
changes in behavior
- Educating persons with dementia and their
caregivers gives them time to develop advanced
care planning
- 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 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?
- Repeating or asking the same thing over and
over?
- Remembering appointments, family occasions,
holidays?
- Writing checks, paying bills, and balancing
the checkbook?
- Deciding what groceries or clothes to buy?
- 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 percent.
The factors used to complete a diagnosis include:
•Medical History
•Mental Status Evaluation
•Physical Examination
•Neurological Examination
•Neuropsychological Evaluation
•Brain Scans
•Laboratory Tests
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:
- Probable Alzheimer’s—indicates a
physician has ruled out all other disorders that
may be causing the dementia.
- 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.
- 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
percent 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 Administration currently approves five
prescription drugs, yet only three are actively
marketed for the treatment of mild to moderate AD.
According to the 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:
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.
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).
Support for Caregivers:
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
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:
A 24-hour, tollfree (multilingual) Information
Helpline (800) 272-3900 that links callers to
information about AD, treatments, caregiving
strategies and local programs.
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.
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.
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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