Early-Onset Alzheimer's Disease Causes, Symptoms, Diagnosis, Treatment, Prevention, Tips For Living

Early-Onset Alzheimer's Disease Causes, Symptoms, Diagnosis, Treatment, Prevention, Tips For Living


What is early-onset Alzheimer's disease?


Nearly 5.2 million Americans are living with Alzheimer's disease; although most of them are older, about 5% have a form of the disease called early-onset Alzheimer's. This condition can be diagnosed in people in their 30s, 40s, and 50s.

Alzheimer’s disease is the most common form of dementia. It affects a person's memory, thinking, and behavior. It often progresses to the point where it affects daily activities and functions.

According to the Alzheimer's Association, Alzheimer’s disease most commonly affects older adults, but it can also affect people in their 30s or 40s. When Alzheimer’s disease occurs in someone under the age of 65, it is known as early-onset (or younger-onset) Alzheimer’s disease.

Although early-onset Alzheimer's disease is rare, those who suspect that they or a loved one have it should seek the advice of a physician immediately, regardless of age. New medications show promising results in slowing the progression of the disease. And although the diagnosis is certainly scary, a proactive approach is not only practical but can give those affected some sense of control over what lies ahead.

What are the differences between early-onset and late-onset Alzheimer's disease?


In addition to age, there are other differences between early-onset and late-onset Alzheimer's disease, including:

A substantial majority of early-onset Alzheimer's disease appears to be linked with a genetic defect on chromosome 14, to which late-onset Alzheimer's is not linked.

A condition called myoclonus — muscle twitching and spasm — is more commonly seen in early-onset Alzheimer's disease than in late-onset Alzheimer's disease.

Some research suggests that people with early-onset Alzheimer's disease decline at a faster rate than do those with late-onset Alzheimer's disease.

Younger people who are diagnosed with Alzheimer's disease tend to be more physically fit and active, and many still have family and career responsibilities. As a result, they tend to react differently to the disease, and may be more likely to feel powerless, frustrated and depressed.

What causes Early-Onset Alzheimer's Disease?


It often runs in families. Many people with early-onset Alzheimer's have a parent or grandparent who also developed Alzheimer's at a younger age. A significant proportion of early-onset Alzheimer's is linked to three genes.

These three genes are different from the APOE gene — the gene that can increase your risk of Alzheimer's in general. The genetic path of inheritance is much stronger in early-onset Alzheimer's. If you have a genetic mutation in one of those three genes — the APP, PSEN 1 or PSEN 2 — it would be common for you to develop Alzheimer's before age 65.

Types of early-onset Alzheimer’s disease


Most types of early-onset Alzheimer’s disease are the same, but there are a few small distinctions:

Common Alzheimer’s disease


The majority of people with early-onset Alzheimer’s disease have the common form of Alzheimer’s disease. The disease will progress in roughly the same way as it does in older people with Alzheimer’s disease.

Genetic Alzheimer’s disease


This form is extremely rare. A few hundred people have genes that directly contribute to Alzheimer’s disease. These people begin showing symptoms of the disease in their 30s, 40s, or 50s. 

Symptoms of Early-Onset Alzheimer's Disease


For most people with early-onset Alzheimer’s disease, the symptoms will closely mirror those of other forms of Alzheimer’s disease.

Early symptoms:


  • Forgetting important things, particularly newly learned information or important dates
  • Asking for the same information again and again
  • Difficulty solving basic problems, such as keeping track of bills or following a favorite recipe
  • Losing track of the date or time of year
  • Losing track of where you are and how you got there
  • Difficulty with depth perception or other vision problems
  • Difficulty joining conversations or finding the right word for something
  • Misplacing things and not being able to retrace your steps to find it
  • Increasingly poor judgment
  • Withdrawal from work and social situations

Changes in mood and personality

Later symptoms:


  • Severe mood swings and behavior changes
  • Deepening confusion about time, place, and life events
  • Suspicions about friends, family, or caregivers
  • Difficulty speaking, swallowing, or walking
  • Severe memory loss

If early-onset Alzheimer's runs in my family, should I get tested for it?


That's a personal decision that only you can make. Anyone who's considering it should pursue genetic counseling — to examine the pros and cons beforehand. For example, it may be helpful to consider how a positive test may affect your eligibility for long term care, disability and life insurance. On the other hand, if you know you carry a form of the early-onset genes, you may be able to take steps to make it easier for you and your loved ones to cope with the effects of the disease.

Does early-onset Alzheimer's progress at a faster rate?


There's a perception that it does, but it's not backed up by hard data. It depends on what endpoint you're using in your measurement. If your endpoint is admission to a nursing home, that may occur earlier for the early-onset group — but only because their spouses or partners have so many other things on their plates.

For example, people who have early-onset Alzheimer's often still have children at home. They or their spouses or partners may have elderly parents that need care, too. Often, people may find themselves overwhelmed with caring for elderly parents, the loved one with early-onset Alzheimer's and their children all at the same time.

Fortunately, resources are available to support people with Alzheimer's to care for themselves and function on their own as long as possible. Many resources are also available for caregivers — support that can be essential when dealing with early-onset Alzheimer's.

Diagnosis for Early-Onset Alzheimer's Disease


The current diagnosis of early-onset Alzheimer’s disease relies on detecting the signs of mental decline noted above. A doctor can then make a diagnosis of Alzheimer’s disease with a few tests.

First, the doctor will perform a medical history, and also conduct some cognitive tests of memory, problem-solving, and other mental skills. The doctor might also test your blood, urine, and spinal fluid. Finally, CT and MRI scans of the brain can give the doctor a closer look at your brain tissue to reveal the extent of the damage.

In the future, researchers are hoping that studies on biomarkers will allow experts to diagnose Alzheimer’s disease more quickly. Biomarkers are proteins in the body or other types of markers that are a reliable indication of the progress of a disease.

Treatment for Early-Onset Alzheimer's Disease


Early-onset Alzheimer’s disease currently has no cure. But doctors have had some success in helping people maintain mental function, control behavior, and slow the progression of the disease.

The drugs that are used to help people maintain mental function include donepezil (Aricept), rivastigmine (Exelon), galantamine (Razadyne), and memantine (Namenda). The results have been mixed, but these drugs seem to help people with their symptoms for anywhere from a few months to a few years.

Other therapies that may play a role in slowing the progress of early-onset Alzheimer’s disease include physical activity, cardiovascular and diabetes treatments, antioxidants, and cognitive training. A number of studies are ongoing in this area, and researchers are learning new things about Alzheimer’s disease every day.

Prevention for Early-Onset Alzheimer's Disease


Experts don’t know how to prevent Alzheimer’s disease, the National Institute on Aging says. Recently, some evidence has shown that detecting the disease early can lead to better treatment options, so it’s best to look for any of the early warning signs mentioned above and see the doctor immediately if you notice them.

How do you suggest involving kids?


A diagnosis of early-onset Alzheimer's can also be difficult for your children who may not have the life experience to understand what you may go through. Children may blame themselves, become angry or react in any number of ways. Try to:

  • Find activities you can enjoy together.
  • Stay engaged and talk with your children honestly about what you're experiencing.
  • Find a support group for children and invite your kids to some of your counseling sessions. Also make your child's school counselor and social worker aware of your condition.
  • Make a record of your thoughts, feelings and experiences in writing, on video or in audio for your children. They will appreciate that you've shared your wisdom and memories.

What coping suggestions do you have for couples?


The loss of intimacy is something poignant with early-onset Alzheimer's. Many people who develop late-onset Alzheimer's have already been widowed. But couples in their 40s or 50s are often in the middle of their lives together. Spouses or partners face the possibility of spending many years without an active partner. Losing the romantic component and changing to a caregiver status complicates the relationship. Try to:

  • Commit to communicating about changes you are experiencing and ways in which your needs also may have changed. Don't be afraid to ask for help.
  • Find new activities that you both are comfortable with and can both enjoy together.
  • Discuss resources that you may need as the disease progresses and put together a folder so these resources can be easily located.
  • Find a counselor who works with couples facing issues you feel challenged by, such as sexuality and changing roles in the relationship.

Tips for living with early-onset Alzheimer's disease


People with early-onset Alzheimer's disease must understand that life is not over. While it's true that your life will change, particularly as the disease progresses, there are things you can do to maintain a meaningful and productive life. It is especially important to continue with activities and interests you can still enjoy, and take comfort in the support of friends and family.

Here are some tips for living with Alzheimer's disease:

Yourself


Alzheimer's disease affects each person differently. You will have good days and bad days. Try to maximize the good days and not dwell on the bad days.

Remember, you are not alone. Consider joining a support group. Call your local chapter of the Alzheimer's Association for information on support groups for people with early-onset Alzheimer's disease.

Don't keep your fears and feelings inside. Seek professional counseling, and/or share your feelings with your friends, family or a clergy member.

Take care of yourself. Get regular check-ups, and follow your doctor's recommendations about diet, exercise and taking medications.

Family and friends


Talk openly with your spouse about issues that are important to you, such as finances, household and child-rearing responsibilities, and sexual intimacy. Look toward future care-giving needs, and try to make plans and decisions together, ahead of time. Encourage your spouse to join a caregiver's support group.

Talk openly with your children about the disease and your symptoms. Understand that your disease affects your children, as well. In addition to being concerned about you, your children may have understandable fears about developing Alzheimer's disease themselves. When appropriate, include your children in making decisions that affect the whole family. Encourage them to become involved in a support group. Consider recording your thoughts, feelings, wisdom and memories, so you may pass them on to your children.

Don't tune out your friends. Share your experience of living with Alzheimer's disease. Stay as active as possible for as long as possible. Invite your friends to attend educational programs about Alzheimer's disease.

Career


As your disease progresses, you may find job-related tasks more difficult to perform. Plan when and what you will tell your employer about the disease, and at what point you should no longer work.

Make adjustments so that you may continue to work as long as possible. This will help to maintain your income and independence, and boost your self-esteem. Consider asking to be placed in a position that better matches your skills and capabilities, or to reduce your work hours.

Investigate all possible options, including early retirement, as well as ways to access all benefits available to you through your employer.

Financial and legal matters


Plan ahead for financial needs, knowing that eventually you will have to leave your job and will lose income. Meet with a financial counselor who can help you investigate insurance, investments and other financial options.

Talk with your family and doctor about what medical treatments you want to receive in the event you become unable to communicate your wishes. You may wish to prepare an advance directive, a legal document that outlines your wishes for future medical treatment.

Organize all of your financial and legal documents, as well as other important information (insurance policies, Social Security information, wills, etc.) in one place, and let your spouse and/or children know where to find them.

Managing early-onset Alzheimer’s disease


Early-onset Alzheimer’s disease can be a difficult disease for people to cope with. The best thing you can do is have a positive outlook and stay as active and mentally engaged as possible.

It’s also important to realize that you are not alone. Rely on your friends and family as much as possible. And don’t be afraid to seek out a support group if you feel that it might be helpful to you.

When the disease is still in its early stages, it's critical to think about the future. This can include: doing financial planning, working with employers on current and potential job responsibilities, clarifying health insurance coverage, and getting all your important documents in order should your health take a turn for the worse.