We think of Alzheimer’s disease and other dementias as something that “old people” get. However, that’s not always the case. An uncommon form of dementia known as early-onset Alzheimer’s can strike in people younger than age 65 – sometimes far younger than that.
“About 10 percent of people with Alzheimer’s in the nation today are under the age of 65,” says Erica Labb, Executive Director of Bridges® by EPOCH at Westford. “That’s approximately 200,000 Americans who find themselves dealing with this debilitating disease in their 50s, 40s and even in their 30s. Because it’s such a rare condition, oftentimes people with early-onset Alzheimer’s feel completely alone.”
While it’s a shocking diagnosis, says Erica, it’s important to remember that you are not alone and that resources are available to help you and your loved ones. “People who develop early-onset Alzheimer’s have different challenges than seniors with the disease, but there are many aspects that are the same,” she says. “As more research and studies are done, we hope to eventually find ways to treat, cure and prevent this disease – for everyone.”
What to Do After Being Diagnosed
You’ve noticed things being a little … different. Maybe your spouse has mentioned how forgetful you’ve become. You can’t find things like your keys or your glasses. Your daily tasks at work are starting to become confusing and difficult to accomplish. Eventually, the situation has progressed to the point that you visit your doctor – who, after a variety of tests, gives you the news that you have early-onset Alzheimer’s.
This can be shocking news, and can take some time to process, says Erica. While it’s important to take steps to secure your and your family’s future, it’s also essential that you take the time and find necessary resources to deal with your emotions and feelings about the diagnosis.
“Being diagnosed with early-onset Alzheimer’s is like being diagnosed with any other terminal disease, and there’s a grieving process that goes along with that,” Erica says. “Understand that these feelings are normal and to be expected. It’s a good idea to find a therapist, other professional or close friend with whom you can share your feelings during this time. It’s also important to remember that the diagnosis does not mean you can no longer do anything or your life has to completely change right away. Dementia is a progressive disease, and even as you progress through the journey, you’ll find many opportunities to make memories, nurture your relationships and enjoy life.”
If you or a loved has early-onset Alzheimer’s, here are steps to take following your diagnosis:
Work with your doctor(s) to determine a course of treatment. There are medications available that may be able to help with some symptoms of your disease. Your doctor may prescribe drugs to help with memory loss, antidepressants, and other medications that can help improve your symptoms or delay the progression of the disease. Your doctor may also refer you to specialists who will enable you to get the best care possible for your situation.
Share the news with your family. A diagnosis of early-onset Alzheimer’s greatly affects a family, particularly if you have children who live at home. While the news is, of course, difficult for a spouse to hear, it can be very difficult for kids, who may not understand or be afraid of what the diagnosis means. However, it’s important to explain in an age-appropriate way what’s happening and reassure them that you are still the same person you were. You may also wish to share the news with your extended family and friends after a time.
Talk to your employer. Before your disease progresses to the point that it affects your ability to perform your job, meet with your employer or HR representative. As someone with dementia, you are protected under the Americans with Disabilities Act, and can benefit from a variety of programs including Family and Medical Leave Act (FMLA) and Consolidated Omnibus Budget Reconciliation Act (COBRA). Your employer may also offer additional benefits and assistance. You and your employer can also discuss a course of action and steps you can take to continue to do your job for as long as possible. You may wish to consider reducing your hours, taking some time off, switching to a different role or another solution.
Meet with a financial planner. Younger people who develop dementia are often still employed and far from retirement age. Eventually, due to the progression of disease, they may have to quit work, which can cause serious financial issues. As soon as possible, meet with a financial planner and attorney who can help you plan for your future financial needs. You will also want to make sure you have your papers in order and designate your spouse as power of attorney – as well as put together a will. You will also want to look into any benefits you may be eligible for as well as assistance programs in your area.
Find support. The biggest and best thing you can do for yourself and your family is to become informed about the disease and find help from external sources. Becoming connected with services such as support groups and local aid organizations will help you gain more understanding about the disease, provide you with much-needed support, tips and tools for adapting to your new normal and helping you identify resources.
While there are many challenges ahead, and many decisions you and your family will have to make, remember – you’re not alone.
“Although this is a life-changing diagnosis, it doesn’t mean that your life as you know it is over,” says Erica. “There are many resources available to help you and your family learn about and cope with the disease. Knowing there are others in your corner and knowing where to ask for help will help you gain peace of mind and provide a brighter path for your future.”
Comprehensive Memory Care
Bridges® by EPOCH at Westford delivers highly specialized memory care assisted living for those with Alzheimer’s disease or other forms of dementia. Our resident-centered approach focuses on providing dignity, purpose and moments of joy in daily life for those in all stages of the disease. We offer a wellness-focused lifestyle that centers around a resident’s current skills and abilities, not those that have been lost to dementia.
Life-Enriching Programs
Our team members take an active role in getting to know each resident on a personal level to deliver programming that is meaningful to them. We account for the preferences, interests, needs and abilities of our residents to connect with them and encourage their involvement in daily life and boost self-esteem.
Warm, Residential Atmosphere
Featuring a stunning residential design, every inch of our community has been designed to benefit those with memory loss. Attributes such as soft colors, directional cues, aromatherapy and interactive life stations create a soothing and secure environment where residents feel comfortable, safe and at home.
Contact us today to learn more.