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
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
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?
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?
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. For more information, request the Association’s Steps to Getting a Diagnosis brochure.
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:
· 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
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
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.
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:
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.
· 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
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.
· 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)
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.
· 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
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.
· 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
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.
· 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
Caring for both your physical and emotional health can improve the quality of your life in the years to come.
· Get regular checkups
· Take any prescribed medications according to directions
· Eat healthy foods
· 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
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.
Seek professional counseling
Share your feelings with your friends, family, or clergy
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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