Home > Diagnosis, Types of dementia > Not Just For Older People

Not Just For Older People

When we think of dementia, we usually think of  a disease affecting people in the later years of their life.  In the United States, most people with dementia are over the age of 65, with at least half of them being over 85.  But an increasingly large number of people are being diagnosed with one of the various forms of dementia as early as age 35 (or even younger).

The most common cause of dementia in persons under 65 years of age is a particular variety of Alzheimer’s disease that is inherited.  However, other causes of early-onset dementia include vascular dementia, frontotemporal dementia, and Lewy Body dementia.  It’s also not uncommon to see some of the rarer forms of dementia in this population, including those caused by multiple sclerosis, lupus, Huntington’s disease, and HIV, among others.

There are a few problems that are encountered with early-onset dementia, that are not typically seen in the aging population.  These include such things as:

1.  Difficult diagnosis.  When a person in his 80s develops cognitive problems, dementia is usually one of the first things that is considered as a cause.  When the person is in his 40s or 50s, dementia is seldom a diagnosis that occurs (at least initially) to a doctor or family members.  And so, time is lost while other possible causative factors are investigated and ruled out.  In the meantime, the disease continues to progress untreated.

2.  Family.  The person in his 80s who is diagnosed with dementia is usually well past his child-rearing years. However, the man in his 40s may well have children still at home, perhaps preparing to enter college or planning a wedding. He may also have the responsibility of caring for his own aging parents.  And if his spouse/partner also works, that means finding someone to provide care/support is that much harder.

3.  Employment.  The person diagnosed with early-onset dementia usually has a job and a career, and treatment often focuses on helping him stay working as long as possible.  This can mean convincing employers to adjust workloads or schedules, as the disease progresses.  And having to leave a job before retirement age can cause additional problems.

4.  Finances.  A diagnosis of dementia can cause a tremendous burden on a family’s financial status.  The potential loss of employment hangs over the person, as well as the stress of having to wrestle with insurance companies.  In addition, it has been reported that almost 1/3 of people with early-onset dementia have no health insurance, and have trouble acquiring it.  If they are unable to qualify for Medicare and Medicaid, or other similar programs, that leaves them in serious trouble.

5.  Qualifying for services.  There are many programs available to help the older person with dementia — financially, socially, and emotionally.  But many of these are just not available for the younger person, or he may not be aware of services that are there.

So, what can we do to help those with early-onset dementia, both those who are close to us and others around the country?  Here are some suggestions:

1.  Increase awareness of early-onset dementia, both among the public and the medical community.

2.  Provide training for doctors about early diagnosis and treatment.

3.  Increase awareness among employers and human resources personnel, including the importance of referrals for disability benefits.

4.  Provide information about possible work accommodations for those with dementia, and the legal requirements for these.

5.  Make sure that people are given early and easily accessible information about Social Security and other disability payments, and provide help with applications as needed.

6.  Find out more about why disability benefits are being denied for this population, and work to change the system.

7.  Work to eliminate the 2-year waiting period for Medicare.

8.  Advocate for states to change eligibility requirements for Medicaid, to allow for  persons with early-onset dementia whose families have higher income levels.

In recent years, more and more research is being done on identifying, and differentiating between, the different types of dementia.  More and more treatment options are being utilized.  Education is one of the key weapons we have in the fight against this insidious disease.  The more we can learn, and the more we can teach others, the better our future is going to look.




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