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Living with Younger-Onset Alzheimer’s

If you’re diagnosed with Alzheimer’s while in your 30s, 40s or 50s, you’ll likely be faced with a lot more challenges than your older counterparts.

For example, people with younger-onset Alzheimer’s, also known as early-onset Alzheimer’s, are more likely to:

  • be gainfully employed at the time of diagnosis
  • still be raising children
  • still have significant debt (e.g., mortgage, car payments)
  • be more reluctant to accept their limitations

Here are some things you can do to prepare yourself for life with early-onset Alzheimer’s:

Tap Kansas City Alzheimer’s Resources

Kansas City has a multitude of Alzheimer’s resources that will help you find appropriate healthcare, Alzheimer’s information, Alzheimer’s home care, support groups, and more.

Tackle Career Issues

If you’d like to continue working, you may want to consider sharing your diagnosis with your direct supervisor. See if there are options available that will allow you to work shorter hours, adapt your job responsibilities, and/or switch to a job that will better suit your abilities.

While you’re still working, you’ll want to visit your human resources department and review your benefits. In particular, ask about:

  • An Employee Assistance Program
  • The Americans with Disabilities Act
  • The Family and Medical Leave Act
  • Short-term disability
  • Long-term disability
  • Early retirement benefits (if you’re close to retirement age)
  • Continuing life insurance benefits in the event you should stop working
  • COBRA

Address Changing Family Dynamics

As your disease progresses, you and your spouse may no longer be able to be equal partners in raising your children. Your relationship with your spouse will also change. Here are some things to consider:

  • Let your spouse and your children know that you have younger-onset Alzheimer’s. You may also want to periodically give your family an update on any disease progression.
  • When reasonable, allow children to participate in major decision making.
  • Talk to your spouse about future child-rearing responsibilities
  • Discuss things that you and your spouse may still be able to do as a couple.
  • Find new activities you can all still do together as a family.

Manage Legal Matters

Talk to a financial counselor and an attorney about current and future financial needs. Some things you may want to discuss include:

  • Developing a will, if you don’t currently have one
  • Designating a power of attorney to make decisions on your behalf when you’re no longer able
  • Signing a living will to let healthcare workers know your wishes in the event you’re not able to make a decision at the time of care
  • Designating a healthcare power of attorney to make healthcare decisions for you when you’re no longer able

Make sure your spouse or next of kin knows how to take care of the family finances and has copies of all of these documents and your life insurance policy.

Maintain Independence

Just because you’ve been diagnosed with younger-onset Alzheimer’s doesn’t mean you can’t still maintain some sense of independence. Here are some things you can do:

  • Take care of yourself. Eat a healthy diet, exercise regularly, and follow your doctor’s orders.
  • Make your home safe. People with dementia need to take additional safety measures.
  • Use technology. Vast improvements in apps and other technology over the last several years can help you maintain some independence.
  • Find transportation. You’ll want to continue participating in activities you still enjoy for as long as you’re able, but it may not be safe for you to drive. So you’ll want to look for alternative transportation methods (e.g., friends, relatives).
  • Get help. A part of maintaining your independence is knowing when you need help. A good Kansas City home care agency that specializes in Alzheimer’s and dementia can help you with things like bathing and grooming, meal preparation, light housekeeping, transportation, and more.

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