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continued:

Early-onset Alzheimer's: When symptoms begin before 65

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 effectively do your job, talk to your employer.

  • You may be able to 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:

  • 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.

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.

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.

  • 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?

The key treatments in Alzheimer's 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 to the situation.

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 that you and your spouse or partner do the research and establish a plan for managing the progression of your condition in the early stages of the disease. Knowing you have a plan and have identified support and resources will help everyone greatly in the future.

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References
  1. Younger-onset Alzheimer's: I'm too young to have Alzheimer's disease. Alzheimer's Association. http://www.alz.org/national/documents/brochure_earlyonset.pdf. Accessed Feb. 17, 2011.
  2. Alzheimer's disease: Unraveling the mystery. National Institute on Aging. http://www.nia.nih.gov/NR/rdonlyres/0FA2EE06-0074-4C45-BAA3-34D56170EB8B/0/Unraveling_final.pdf. Accessed Feb. 17, 2011.
  3. Bird TD, et al. Dementia. In: Fauci AS, et al. Harrison's Online. 17th ed. New York, N.Y.: The McGraw-Hill Companies; 2008. http://www.accessmedicine.com/content.aspx?aID=2904082. Accessed Feb. 17, 2011.
  4. Financial matters. Alzheimer's Association. http://www.alz.org/living_with_alzheimers_financial_matters.asp. Accessed Feb. 17, 2011.
  5. Smith GE (expert opinion). Mayo Clinic, Rochester, Minn. Feb. 23, 2011.
  6. Genetic testing. Alzheimer's Association. http://www.alz.org/national/documents/topicsheet_genetictesting.pdf. Accessed Feb. 17, 2011.
AZ00009 March 31, 2011

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