Considerations for People Diagnosed with Early-Onset Alzheimer’s
Alzheimer’s disease affects 5.7 million Americans. The majority of people who are diagnosed with Alzheimer’s are over the age of 65. However, it is not just a disease of old people. Up to five percent of the people who have Alzheimer’s, or as many as 200,000 individuals, are younger than 65. This type of Alzheimer’s is referred to as early-onset Alzheimer’s.
People in the prime of their lives do not expect to receive a diagnosis of dementia and many doctors do not look for or think about Alzheimer’s as the source of a person’s issues. Therefore, it is not unusual for a younger person who is experiencing memory loss and behavior changes to be told that their symptoms are due to stress and that they should get some rest.
Getting an accurate diagnosis of Alzheimer’s at any age can be a long and frustrating process, and even more so if you are in your 40’s or 50’s. As there is no single test to diagnose Alzheimer’s, a diagnosis can only be made after a complex medical evaluation that includes many different tests. When a diagnosis is finally confirmed, it can be devastating to both the individual and their family. The only piece of advice that is often offered to a young person is to go home and get your affairs in order. Although that may be good advice for an adult at any age, especially someone living with a chronic or terminal illness, it is not helpful when it is the first and only piece of advice that is offered. It only diminishes hope.
How does Alzheimer’s affect a person who is younger than 65 differently from someone who is older? As it is easy to imagine, people in their 40’s and 50’s usually lead very busy lives. They are progressing through their careers and taking on more challenging roles. They are building relationships with life partners and raising a family. They may be caregivers themselves to other family members. A diagnosis of Alzheimer’s can impact all these areas of life and more.
What can you do to manage a diagnosis of Alzheimer’s and continue to live well? Learn as much as you can about your condition. Knowledge is power and the better you understand the condition and your unique challenges, the better equipped you will be to create your own personalized solutions. Talk to your family and determine together what will be needed and how family roles may have to change. If you have young children, decide how much information you should share about your condition.
If you work outside of the home, learn about the benefits available to you through your employer. Obviously, a diagnosis can have a severe impact on your family’s finances. Questions to consider include: Can you continue to work? What modifications to your lifestyle or home will you need? Will your spouse need to leave his or her job to provide care? What are the long-term costs associated with care?
Getting support from others who are also living with early-onset Alzheimer’s can make a tremendous difference to your outlook and what you think your future holds. The Dementia Alliance International is an organization exclusive to people living with a diagnosis of dementia and includes members from all over the world who provide peer support. The Alzheimer’s Association can also provide you with resources, information and support. The good news is that people living with early-onset Alzheimer’s disease have a voice and many are using it to demonstrate that life can continue after diagnosis.
If you or someone you love has received an early-onset Alzheimer's diagnosis, getting your affairs in order can also include planning ahead for future care needs. Takacs McGinnis Elder Care Law can help. Just give us a call at 615.824.2571.