Learning About Early Onset Dementia

Dorian Martin Health Guide
  • During a recent weekend, my friend Chris and I decided to head to the tennis court for a little exercise. On the next court were two gentlemen who were enjoying the beautiful day by playing a vigorous match. As soon as they finished their match, these gentlemen invited us to join them in an impromptu set of mixed doubles. When I had a chance to visit with my partner after the match to compare notes on our respective lives, I found out that his wife had early onset Alzheimers disease. After hearing my partner’s situation with his wife, I thought the subject needed to be explored on this site since so often we think of Alzheimer’s disease as affecting the elderly only.
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    In June 2006, the Alzheimer’s Association released a report, Early Onset Dementia: A National Challenge, A Future Crisis, which provided key details that will impact not only loved ones, but also America’s health care system and business world. The report  notes that newly analyzed data from the Health and Retirement Survey showed that there may be nearly half a million Americans under the age of 65 who have dementia or cognitive impairment at a level of severity consistent with Alzheimer’s. The Alzheimer’s Association has calculated this information along with data from other studies to determine that between 220,000 and 640,000 people in the U.S. have early onset Alzheimer’s or related dementia.

    Some of the findings from the Early Onset Dementia report are:

    - Getting this type of diagnosis presents serious problems for individuals under the age of 65 since health care providers generally don’t look for the disease in younger patients. Therefore, a significant amount of time can elapse before the right diagnosis is made and proper treatment begins.

    - Because many people with early onset Alzheimer’s disease and other dementia are still working when their symptoms emerge, they may experience changes in their job performance or behavior. These changes may not be understood as being due to this disease.

    - People with early onset dementia who leave their jobs before diagnosis may be denied employer assistance that is provided to individuals with disabilities.

    - People with early onset dementia often are unaware that disability payments are available through a variety of governmental programs. Furthermore, they may not know that a person with dementia has a qualifying disability.

    -  Many people who have early onset dementia have low incomes and are in need of assistance but have difficulty getting this help.

    - Many people with early onset dementias are in poor health, have higher rates of serious medical conditions, are more likely to be hospitalized, and have higher out-of-pocket expenditures for prescription drugs.

    - Almost one-third of those with early onset dementia have no health insurance.

    - People with early onset dementia who require long-term care face high out-of-pocket expenses that, depending on their age and financial circumstances, may not be covered by Medicaid, Administration on Aging programs, or other programs that pay for long-term care services for some people age 65 and older who have dementia.

  • - Existing medical care, home care or community services programs may not be appropriate for early onset individuals.

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    - Family members and other care partners often lack information and support that they need to provide care to their loved ones.

    We often think of Alzheimer’s disease as striking people when they are in their twilight years. However, this report very clearly shows that people in mid-life are dealing with dementia as a patient (instead of as a caregiver). We need to stop and think about the challenges that these people face in their professional careers and with their health providers. Finally, we need to encourage the creation of an education effort to help the general population understand issues related to early onset dementia so that we can build a supportive environment for those who tragically are diagnosed with this disease.


    For a copy of the report


    Do you have a loved one who has early onset dementia? Join our discussions about issues you are finding related to this situation.





Published On: March 05, 2007