Early-Onset: The Overlooked Alzheimer's Population
Updated: Apr 22
The number one risk factor for Alzheimer’s is age, with most cases occurring in people who are over the age of 65. Despite this fact, Alzheimer’s is not just a disease of old age. Approximately 200,000 Americans under the age of 65 have early-onset Alzheimer’s, representing up to 5% of the total number of people living with Alzheimer’s in the United States. Most early-onset cases involve sporadic Alzheimer’s, which is the most common form of the disease and is not attributed to genetics. This form of Alzheimer’s progresses roughly the same way in younger people as it does in older people. Researchers don’t understand why some people get sporadic Alzheimer’s at such a young age. There are also rare cases of familial Alzheimer’s, in which people inherit genes that directly contribute to the disease. People who carry these genes tend to begin showing symptoms between the ages of 30 and 60, and they also tend to have multiple family members from multiple generations who have had the disease at a young age. Family history is the only known risk factor for early-onset Alzheimer’s.
Doctors typically don’t look for Alzheimer’s in younger people, so getting a diagnosis of early-onset Alzheimer’s can be a long and frustrating process. Symptoms may be incorrectly attributed to stress, menopause, or depression, which can lead to potential misdiagnoses and incorrect treatment. Because of a missed diagnosis, people with early-onset Alzheimer’s may damage relationships and lose jobs due to a lack of understanding of their condition. Early detection of the disease leads to better treatment options. After being diagnosed, they will almost certainly miss out on income.
The diagnosis relies on the detection of signs of mental decline. Early signs to look out for include:
Forgetting newly learned information, important dates, or other important things.
Asking for the same information repeatedly.
The decline in basic problem-solving skills (ex. Paying bills or following a recipe).
Losing track of the date or time of year.
Forgetting where you are and how you got there.
Vision problems, especially trouble with depth perception.
Trouble joining conversations or finding the right words.
Misplacing things and not being able to retrace your steps to find them.
Increasingly poor judgment.
Withdrawal from work and social situations.
Changes in mood and personality.
If the doctor is suspicious that a patient may be experiencing early-onset Alzheimer’s, they will start by asking questions about the patient’s health history and do cognitive tests of memory, problem-solving, and other mental skills. To make sure that you are providing as much information as possible, it may be a good idea to write down symptoms of memory loss or other cognitive difficulties before the appointment, so you don’t miss anything. Based on these results, the doctor may ask the patient to perform more detailed testing with a neuropsychologist, as well as submitting samples for blood, urine, and/or spinal fluid testing. Imaging tests such as a CT or MRI of the brain may also be performed. Unfortunately, there is no one test that can make or confirm an Alzheimer’s diagnosis. When making a diagnosis, the doctor will make a judgment decision based on the comprehensive evaluation that is performed. In the future, researchers hope to use biomarkers to provide a diagnosis more quickly. Biomarkers are proteins in the body, or other types of markers, that reliably indicate the progress of a disease. Your local Alzheimer’s Association will provide referrals for trusted doctors in your area upon request.
Tips to help get the most from a visit with the doctor:
Know the reason for your visit and what you want to happen.
Before your visit, write down the questions you want to be answered.
Bring someone with you to help you ask questions and remember what your provider tells you.
At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also, write down any new instructions your provider gives you.
Know why a new medicine or treatment is prescribed, and how it will help you. Also, know what the side effects are.
Ask if your condition can be treated in other ways.
Know why a test or procedure is recommended and what the results could mean.
Know what to expect if you do not take the medicine or have the test or procedure.
If you have a follow-up appointment, write down the date, time, and purpose for that visit.
Know how you can contact your provider if you have questions.
Although there are no treatments to cure or slow down the progression of Alzheimer’s, researchers have found some medications and lifestyle changes that can make the symptoms of Alzheimer’s more manageable and improve quality of life. Commonly used drugs include Donepezil, Rivastigmine, Galantamine, and Memantine. The results of these drugs are mixed, but they have generally shown to be effective in treating symptoms in the short-term. Other activities that may make the symptoms of early-onset Alzheimer’s more manageable include physical activity, cardiovascular and diabetes treatments, antioxidants, and cognitive training.
Tips for living with early-onset Alzheimer’s:
Have a positive outlook (as difficult as that may be!), stay active, and stay mentally engaged.
Rely on friends and family as much as possible.
Join a support group.
Talk with a financial planner and an attorney to help you plan for your future financial needs.
Organize your financial documents and make sure your partner understands and can manage your family's finances.
Ask your employer whether early retirement is an option.
Explore what benefits may be available to you under the Americans with Disabilities Act, Family, and Medical Leave Act, and COBRA, as well as through Social Security, Medicare, or Medicaid.
Ask to transition to a position at work that is a better fit for your changing skills and limitations.
Familiarize yourself and your partner/caregiver with the benefits provided by your employer, especially health insurance coverage, and ask if your employer offers an employee assistance program.
Consider reducing your hours at work or taking time off if needed.
Eat a healthy diet.
Cut down on alcohol.
Use relaxation techniques.
No family is ready for a diagnosis of early-onset Alzheimer’s, and unfortunately, people who are diagnosed at a young age may still have children in the house. This will present new challenges in the relationship with the person’s partner and children; however, you can still have a strong and healthy relationship with an effort from all parties involved.
Tips for couples coping together:
Talk about what kind of help you need from each other. Communicate changes that you're experiencing and ways that your needs also may have changed. Ask for help if you need it!
Continue participating in as many activities as possible that you enjoy with your partner and adapt or find new activities as necessary.
Keep a folder of resources you may need as the disease progresses.
Find a counselor who works with couples facing issues you feel challenged by.
How to involve the kids:
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. Make your child's school counselor and social worker aware of your condition.
Keep a written, video or audio record of your thoughts, feelings, and experiences for your children. They'll appreciate your sharing your wisdom and memories.
A diagnosis of early-onset Alzheimer’s is devastating and can present challenges to a family that may seem overwhelming. Unfortunately, there currently isn’t anything that can be done to slow down the condition or make it go away, but with the proper mindset and actions, you can maintain your relationships and continue to get the most out of life.