What types of problems occur more often in early-onset Alzheimer's?
Alzheimer's disease has a tremendous impact at any age. But we don't expect to see dementia at a young age, so problems emerging at work or home may be misunderstood. People with early-onset Alzheimer's may lose relationships or jobs instead of being identified as medically ill or disabled.
What suggestions do you have for coping at work?
Before your condition significantly affects your ability to do your job, talk to your employer. What you can do:
- Find out if you can switch to a position that better suits your emerging limitations.
- Familiarize yourself and your spouse, partner or caregiver with your benefits, and find out whether an employee assistance program is available.
- Explore what benefits may be offered to you under the Americans with Disabilities Act.
- If you feel overwhelmed, consider reducing your hours or taking time off.
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:
- Communicate about changes you're experiencing and ways in which your needs also may have changed. Don't be afraid to ask for help.
- Find new activities that you can enjoy together.
- 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, such as sexuality and changing roles in the relationship.
How do you suggest involving kids?
A diagnosis of early-onset Alzheimer's also can be difficult for your children, who may not 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. 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.
Are there financial issues to consider?
People with early-onset Alzheimer's often have to quit work, and this loss of income is a serious concern. Finances get even tighter if spouses or partners also quit their jobs to become full-time caregivers.
Some medical benefits and many social-support programs won't provide assistance unless the person with Alzheimer's is older than age 65. Younger people may need special waivers to get into such programs. What you can do:
- Talk with a financial planner and an attorney to help you plan for your future financial needs.
- Ask your employer whether early retirement is an option.
- Explore what benefits may be available to you through Social Security, Medicare or Medicaid.
- Organize your financial documents and make sure your spouse or partner understands and can manage your family's finances.
What's most important to know?
Key elements of Alzheimer's care are education and support. This is especially true given the unique social challenges of early-onset Alzheimer's. Getting connected to services such as support groups can help you identify resources, gain a deeper understanding of the disability and learn ways to adapt.
Remember, you're not alone. Many resources are available to assist you, your family and caregivers to cope with this disease. Options for support may vary depending on where you live.
Be sure in the early stages of the disease that you and your spouse or partner do research and establish a plan for managing the progression of your condition. Knowing you have a plan and have identified support and resources will help everyone in the future.
April 12, 2014
- Younger onset Alzheimer's: I'm too young to have Alzheimer's disease. Alzheimer's Association. http://www.alz.org/search/results.asp?q=early-onset%20alzheimer%E2%80%99s%20disease&as_dt=i#gsc.tab=0&gsc.q=early-onset%20alzheimer%E2%80%99s%20disease&gsc.page=1. Accessed Dec. 17, 2013.
- Sherva R, et al. Genetics of Alzheimer's disease. http://www.uptodate.com/home. Accessed Dec. 17, 2013.
- Alzheimer's disease: Unraveling the mystery. National Institute on Aging. http://www.nia.nih.gov/alzheimers/publication/alzheimers-disease-unraveling-mystery. Accessed Dec. 17, 2013.
- Panegyres PK, et al. Difference between early and late onset Alzheimer's disease. American Journal of Neurodegenerative Disease. 2013;2:300.