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OVERVIEW OF ALZHEIMER'S DISEASE
OVERVIEW OF
ALZHEIMER'S DISEASE
No one yet knows exactly
what causes Alzheimer’s disease. Understanding its underlying mechanisms will
provide the basis for advances in all areas of research, including diagnosis,
treatment, prevention and cure. The Alzheimer’s Association has always
supported these basic forms of research. In an effort to find a cure, the
Association is committed to continuing to fund research that focuses on
understanding the causes and mechanisms behind Alzheimer’s disease. In the
last year alone, much has been learned about factors that may contribute to the
onset of Alzheimer’s:
- Significant findings
from key studies have improved our understanding of plaques and tangles in the
brains of individuals with Alzheimer’s disease and eventually may lead to the
development of treatments to slow the effects of the disease process.
- Discovery of a
previously unknown lesion characteristic of Alzheimer’s disease may lead
researchers to further understand the disease process and how intervention
therapies may be designed. This lesion, called AMY plaque, may play a role in
the onset and progression of Alzheimer’s.
- Studies of the
inflammatory processes of the brain and the role of oxidative stress in
Alzheimer’s disease have led to preliminary indications of the beneficial use
of anti-inflammatories, such as ibuprofen, and antioxidants, such as vitamin
E, in treating or slowing the progression of the disease.
An early diagnosis is
important
If you are experiencing memory, judgment, or
reasoning problems; difficulty with day-to-day functions; or changes in your
mood or behavior, it is important to visit a physician to determine if you have
Alzheimer’s disease or another dementia.
Recognizing symptoms early
and obtaining an accurate diagnosis is crucial because it may:
-
maximize the quality of
your life
-
resolve anxiety
-
give you a greater chance
of benefiting from existing treatments
-
give you more time to
plan for the future
Another important reason to
get a diagnosis is to identify the actual cause of the dementia so that you
receive the proper care. Some dementias, like those related to depression, drug
interaction, thyroid problems and certain vitamin deficiencies, may be
reversible if detected early. Other causes of dementia, including strokes,
Huntington’s disease, Parkinson’s disease and Alzheimer’s disease, are not
reversible.
Document your changes
-
You and a family member
can aid your physician by providing valuable information, including:
-
changes that have
occurred in yourself, possibly documented in the form of a journal
-
signs of the disease
beyond memory loss, and personality and mood changes
-
a list of all the
medications and herbal remedies you are taking
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HOW IS IT
DIAGNOSED?
There is no one diagnostic
test that can detect if a person has Alzheimer’s disease. Standard clinical
methods combine physical and neuropsychological testing with caregiver input and
the physician’s judgment, and the diagnostic process may take more than one
day. New diagnostic tools and criteria make it possible for physicians to make
a positive clinical diagnosis of Alzheimer’s with approximately 90 percent
accuracy. The diagnostic process will involve your primary care physician and
possibly other specialty physicians, such as a psychiatrist or neurologist.
Evaluations commonly
performed during a diagnosis include:
·
A medical history, which
provides information about current mental or physical conditions, prescription
drug intake and family health history.
·
A mental status evaluation
that assesses your sense of time, place and ability to remember, understand,
communicate and do simple calculations. Please note that in early-stage
Alzheimer’s, screening of mental status may not detect symptoms.
·
A physical examination,
which includes the evaluation of your nutritional status, blood pressure and
pulse.
·
A neurological examination
that tests the nervous system (brain and spinal cord) for evidence of other
neurological disorders. A magnetic resonance imaging (MRI) study of the brain is
used to search for other possible causes of dementia (e.g., stroke). In early
stages of Alzheimer’s, the results are often categorized as “normal” or
“unremarkable.”
·
Laboratory tests
(such as blood and urine tests) to provide additional information about
problems other than Alzheimer’s that may be causing dementia.
·
Neuropsychological evaluations,
which test memory, reasoning,
vision-motor coordination and language function. These evaluations may provide
the only evidence of dementia, especially in the early stages.
·
Psychiatric evaluation,
which provides an assessment of mood and
other emotional factors that could mimic dementia or may accompany Alzheimer’s
disease.
Questions you should ask
your physician prior to testing:
·
Which tests will be performed, and
what is involved?
·
How long will the tests take?
·
How long will it take to learn
results?
Your Diagnosis
A diagnosis of Alzheimer’s
usually falls into one of the following three categories:
·
A diagnosis of probable
Alzheimer’s indicates that the physician has ruled out all other
disorders that may be causing dementia and has come to the conclusion that
symptoms are most likely the result of Alzheimer’s disease.
·
A diagnosis of possible
Alzheimer’s means that Alzheimer’s disease is the primary cause of
dementia symptoms but that another disorder may be affecting the known
progression of Alzheimer’s, so that the disease process is somewhat different
from what is seen normally.
·
A diagnosis of definite
Alzheimer’s can be made only at the time of autopsy and requires
examination of brain tissue. A brain autopsy is the only way to diagnose the
disease with 100 % accuracy and can provide a vital record for your family’s
medical history.
Questions to ask your
physician about your diagnosis
·
What does the diagnosis mean?
·
Are additional tests needed to
confirm the diagnosis?
·
What changes in behavior or mental
capacity can I expect over time?
·
What care will I need, and what
treatment is available?
·
What else can be done to alleviate
symptoms?
·
Are there clinical trials being
conducted in my area?
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Is it Alzheimer's? 10 Warning Signs
Alzheimer’s disease is not
just memory loss. People with Alzheimer’s disease experience a decline in
cognitive abilities, such as thinking and understanding, and changes in
behavior. To help you determine if you have any of these symptoms, the
Alzheimer’s Association has developed a list of warning signs that include
common symptoms of Alzheimer’s disease (some also apply to other dementias).
If you find that you have several of these symptoms, you should consult your
physician for a complete examination.
10 Warning Signs
1.
Memory loss that affects job skills
It’s normal to occasionally
forget an assignment, a deadline or a colleague’s name, but frequent
forgetfulness or unexplainable confusion at home or in the workplace may signal
that something more serious is to blame.
2.
Difficulty performing familiar tasks
Busy people get distracted
from time to time. For example, you might leave something on the stove too
long or simply not remember to serve part of a meal. People with Alzheimer’s
might prepare a meal and not only forget to serve it but also forget they made
it.
3.
Problems with language
Everyone has trouble
finding the right word sometimes, but a person with Alzheimer’s disease may
forget simple words or substitute inappropriate words, making his or her
sentences difficult to understand.
4.
Disorientation to time and place
It’s
normal to momentarily forget the day of the week or what you need from the
store. However, people with Alzheimer’s disease can become lost on their own
street – not knowing where they are, how they got there, or how to get back
home.
5.
Poor or decreased judgment
Choosing not to bring a
sweater or coat along on a chilly night is a common mistake. However, a person
with Alzheimer’s may dress inappropriately in more noticeable ways. For
example, they may wear a bathrobe to the store or several blouses on a hot day.
6.
Problems with abstract thinking
Balancing a checkbook can
be challenging for many people, but for someone with Alzheimer’s, recognizing
numbers or performing basic calculation may be impossible.
7.
Misplacing things
Everyone temporarily
misplaces a wallet or keys from time to time. A person with Alzheimer’s disease
may put these and other items in inappropriate places — such as an iron in the
freezer or a wristwatch in the sugar bowl — and then not recall how they got
there.
8.
Changes in mood or behavior
Everyone experiences a
broad range of emotions — it’s part of being human. However, people with
Alzheimer’s tend to exhibit more rapid mood swings for no apparent reason.
9.
Changes in personality
People’s personalities may
change somewhat as they age, but a person with Alzheimer’s personality can
change dramatically – either suddenly or over a period of time. For instance,
someone who is generally easygoing may become angry, suspicious, or fearful.
10. Loss of initiative
It’s normal to tire of
housework, business activities or social obligations, but most people retain or
eventually regain their interest. A person with Alzheimer’s disease may remain
uninterested and uninvolved in many or all of his usual pursuits.
The Next Step
Families usually turn to their
primary care physicians first to diagnose Alzheimer’s disease. Unfortunately,
many physicians have not had the proper training to manage the multiple health
care problems in older adults or to recognize possible signs of dementia in
individuals below the age of 65. If you aren’t getting the answers you need
from your primary care physician, you may need to request a referral to a
specialist in Alzheimer diagnostics.
To locate
professionals in your area who specialize in diagnosing Alzheimer’s disease,
contact the Alzheimer’s Association, Greater Pennsylvania Chapter Helpline by
calling (800) 272-3900 or by clicking
here. For more information, request the Association’s Steps to Getting a
Diagnosis brochure.
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EARLY STAGE
As the public’s awareness
grows and diagnostic procedures become more advanced, more individuals are being
diagnosed earlier in the course of Alzheimer’s disease. In the beginning stage
of Alzheimer’s, referred to commonly as early-stage, many individuals
have special needs that may be overlooked. Below are some specific needs and
suggestions on how to best assist early-stage individuals and their caregivers:
Common Symptoms in
Early-Stage:
Fortunately, most
individuals experience mild symptoms that allow one to continue with their daily
routine. If you are in early-stage, you may experience difficulty with:
·
Recalling recent events
·
Making decisions and judgments
·
Managing routine chores
·
Expressing thoughts and feelings
·
Processing what was said by
others
·
Handling complex tasks such as
balancing a checkbook
Reactions to Diagnosis:
Noticeable changes in
mental functioning affect both the diagnosed individual and the caregiver.
Reactions may include:
·
Depression
·
Denial
·
Anxiety and fear
·
Isolation and loneliness
·
Embarrassment and shame
·
Feelings of loss
How
to Address and Combat These Reactions:
·
Acknowledge feelings and provide
a forum to talk and ask questions. Refer the individual and their family to
an Alzheimer’s Association support group
·
Assess for depression and/or any
suicidal tendencies. Short-term counseling and medications may be helpful in
some cases
·
Refer families to a physician
knowledgeable in dementia for evaluation and treatment
·
Encourage the diagnosed
individual and caregiver to take care of his or her mental and physical health
Relationship Changes:
The diagnosis may cause
stress between the diagnosed individual, their caregiver, family, friends and
colleagues.
Common experiences of
early-stage individuals include:
·
Feelings that people may be
trying to help too little or too much
·
Role changes in relationships
with family and friends
·
Anxiety over whom to tell about
the diagnosis
·
Increased or decreased sexual
desire
·
Feelings of not being understood
by others
·
Problems trusting their own
decisions
·
Family and friends withdrawing
or avoiding them
·
Difficulty interacting in social
situations
·
Increased anxiety over legal and
financial issues
Common
experiences of caregivers include:
·
Role changes within the
relationship
·
Anxiety over whom to tell about
the diagnosis
·
Changes in sexual relationship
·
Feeling misunderstood by family
and friends, which may lead to isolation
How to Face These
Issues:
·
Help families and friends talk
openly about the changes they are experiencing and how they feel
·
Refer the early-stage individual
and their family to support groups to share feelings and develop supportive
relationships
·
Include the diagnosed individual
in the decision-making process whenever possible
·
Encourage openness with friends
and family about the changes that are taking place
Lifestyle Changes:
Most Alzheimer families
must adapt and modify their daily routine in response to the progression of the
disease.
Common experiences of
early-stage individuals include:
·
Increased or decreased concern
about safety
·
Difficulty performing daily
routines without assistance
·
Frustration due to the need for
assistance with daily routine
·
Anger and grief due to loss of
independence
Common
experiences of caregivers include:
·
Difficulty assessing the
individual’s capacity to manage their personal care and affairs
·
Loss of independence due to
added caregiving responsibilities
·
A need for socialization with
others
Tips for Managing These
Challenges:
·
Focus on the remaining abilities
of the individual and develop strategies to compensate for declining abilities
·
Have a home safety evaluation
conducted and make modifications to address safety issues
·
Suggest families enroll in the
Alzheimer’s Association Safe Return Program
·
Encourage caregivers to keep a
journal as a way of acknowledging feelings
·
Help caregivers determine when
the diagnosed individual should stop driving and assist with finding alternate
means of transportation
·
Establish a daily routine for
families that provides structure, consistency and mental stimulation
·
Incorporate physical exercise
into daily routine
·
Refer families to home care,
adult day care services, social clubs and support groups
·
Help families determine when it
is no longer appropriate for the individual to live alone or remain at home
alone for any period of time
·
Create a list of practical
things others can do to assist caregivers and tips on how caregivers can ask
for help
Planning for the Future:
Early-stage individuals can
play an active role in making decisions about treatment options, housing
preferences, and financial and legal issues. Planning for the future
facilitates decision-making for the caregiver and assures the individual’s
wishes are known.
Alzheimer families may be
reluctant to initiate future planning due to denial and depression. It also may
be difficult for the family to address these issues openly based on the family’s
history of communication, status of relationships and fears about the future.
How to Help Families
Address These Issues and Plan for the Future:
·
Refer families an elder law
attorney for counsel on issues they may face as the disease progresses and
options for addressing them
·
Encourage completion of a
durable power of attorney and advance directives for health care and financial
planning as soon as possible
·
Refer families to a care manager
to learn more about programs and services available in their community
·
Discuss and explore alternative
housing options such as assisted living and nursing homes before they are
needed
·
Offer information about
participating in research studies and the option of having a brain autopsy
performed to confirm diagnosis.
Challenges for Those Who
Live Alone
Not all individuals with
early-stage Alzheimer’s have a caregiver living with them. These individuals
will need more frequent safety assessments and medical monitoring. Be sure to
watch for changes that would indicate the need for more supervision. Talk with
colleagues about confidentiality issues and mandated reporting laws in order to
be prepared to respond to different situations that may arise.
Click here to contact the
Greater Pittsburgh chapter to learn more about early-stage Alzheimer’s disease.
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EARLY ONSET
Early-onset Alzheimer’s
accounts for up to 10 percent of Alzheimer’s cases and affects people under the
age of 65 — including some individuals in their 30s, 40s or 50s. A person who
has early-onset Alzheimer’s experiences symptoms similar to those found in
late-onset Alzheimer’s, but is often still active in his or her career, family
and social obligations when the symptoms begin.
If you have early-onset
Alzheimer’s disease, it’s important to understand that your life is not over.
You can live a meaningful and productive life by engaging in the activities and
interests you can still enjoy and by finding comfort in your family and
friends. Living with Alzheimer’s means dealing with some life transitions
sooner than you had anticipated. Here are helpful guidelines for dealing with
the many aspects of your life:
Your Family
Your spouse
Most people with Alzheimer’s disease continue to live at home even as the
disease progresses. As a result, your spouse may have to manage the household
and your care. He or she may feel a sense of loss because of the changes the
disease brings to your relationship. You may both experience changes in your
sexual relationship.
You can:
·
Continue to participate in as
many activities as you can
·
Modify activities to your
changing abilities
·
Talk with your spouse about how
he or she can assist you
·
Work with a family member to
gather information about caregiver services and their costs, such as
housekeeping and respite care, and start a file you can consult when they are
needed
·
Seek professional counseling to
discuss role reversals within the relationship as well as sexuality issues
·
Continue to find ways in which
you and your spouse can fulfill the need for intimacy
·
Encourage your spouse to attend
a support group for caregivers
Your children
Children often experience a wide range of emotions. Younger children may be
fearful that they will get the disease or that they did something to cause it.
Teenagers may become resentful when they must take on more responsibilities for
helping around the home or feel embarrassed that their parent is “different.”
College-bound children may be reluctant to leave home.
You can:
·
Talk openly with your children
about the changes you are experiencing as a result of the disease
·
Find out what your children’s
emotional needs are and find ways to support them, such as meeting with a
counselor who specializes in children who have a loved one diagnosed with
Alzheimer’s
·
Notify school social workers and
teachers about your situation and give them information about the disease
·
Encourage your children to
attend support group meetings and include them in counseling sessions
·
Record your thoughts, feelings
and wisdom to comfort or counsel your children as they reach important stages
in their life (graduations, dating, marriage, births, and death)
Your Friendships
Friends, coworkers, and
neighbors may not understand what is happening to you and therefore, they may
keep their distance or resist keeping in touch. They may not know what to do or
say and may be waiting for you to reach out to them.
You can:
·
Share your experience of living
with Alzheimer’s disease
·
Invite friends to the
Alzheimer’s Association educational programs
·
Continue social activities as
much as possible
·
Let friends know when you need
help and support and what they can do
Your Career
You may find job-related tasks more
difficult to perform as the disease advances. Plan when and what you will tell
your employer about the disease and at what point you should no longer work.
Click here to contact the Greater Pittsburgh Chapter to obtain information about
the disease that you can provide to your employer.
You can:
·
Continue to work as long as you
and your physician feel you are able
·
Use reminders, memos and a
calendar to help you perform your job
·
Discuss with your employer the
possibility of switching to a position that better matches your abilities and
strengths or of reducing your work hours
·
Research early-retirement
options
·
Educate yourself – as well as
your spouse or guardian – about the benefits available to you and how to claim
them
Your Finances
If you are the primary income earner,
you may be concerned about providing financially for your family now and in the
future. Insurance and other benefits may be more difficult to obtain, and there
may be future health care expenses to consider.
You can:
·
Meet with a skilled financial
consultant or an attorney to discuss current and future investments,
insurance, and retirement options
·
Find out about government
assistance programs such as Social Security, Medicare and Medicaid
·
Review your employer-provided
and/or personal disability insurance policies
·
Organize financial documents and
other important information (birth certificate, insurance policies, retirement
accounts, Social Security information, wills, etc.) in one place and educate
your spouse about them
·
Research college scholarship and
grant money for your children
Yourself
Caring for both your physical and
emotional health can improve the quality of your life in the years to come.
General health
·
Get regular checkups
·
Take any prescribed medications
according to directions
·
Eat healthy foods
·
Exercise
·
Rest when you are tired
·
Cut down on alcohol
·
Take care of your spiritual
needs
·
Reach out for help when you need
it
·
Minimize stress by learning
relaxation techniques
Feelings
After receiving a
diagnosis, you may experience a range of emotions, including:
·
Denial about the diagnosis
·
Feelings of isolation because no
one seems to understand what you are going through
·
Fear of what the future holds
for you and your family
·
Frustration that you can’t cure
the disease or make yourself understood
·
A sense of loss over your
diminished mental agility or status in your community or profession
·
Anger that your life will take a
different course from the one you and your family planned
·
Fear that you will lose your
friends, family, and job or that you will no longer be able to support your
family
·
Depression or sadness over the
changes you are experiencing — your physician may be able to prescribe
medication that will help ease this feeling. It’s important not to keep your
feelings to yourself. Find ways to express your emotions and frustrations,
such as:
-
Join an Alzheimer’s
Association support group. The Pittsburgh Regional Office offers a
support group for people with early stage and early-onset Alzheimer’s
disease. Click here for more information.
-
Seek professional
counseling
-
Share your feelings
with your friends, family, or clergy
Your Future
Planning ahead allows you to consider
your options carefully to assure that your future will be in good hands.
·
Consult with an attorney, an
accountant and/or a care manager to assist you with legal and financial
planning
·
Communicate your advance
directives for care, treatment, resuscitation, etc., with your primary
caregiver or health care agent
·
Locate adult day programs and
residential care settings that have experience in assisting early-onset
individuals
·
Write down thoughts, memories,
life stories and wishes that you would like to pass on to your family. Keeping
a journal or putting together a scrapbook can be meaningful activity for you
and keepsake for your family to cherish.
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