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Frontotemporal Lobe Dementia: Wife as a Caregiver

by jlcox
(Woodburn, OR)

My husband, at age 52, was diagnosed with FTD, Frontotemporal Dementia.

In our early 50's our world in so similar to those aging with Alzheimer's disease, except we are young.

He is healthy looking and the memory is the last to go. This is more behavioral.

Lucky for us the kids were all grown.
Many in this situation still have children at home. There are 250,000 in America effected with this "early onset dementia".

Dementia is commonly thought of as an older person's disease. It is financially devastating to families because in the prime of the earning years, they are affect with it.

Early onset also has a half to quarter life of Alzheimer's disease.

Most Assisted Living care facilities are not set up to care for the strong young dementia patients.

The majority of the times the spouse is having to work full time due to finances and for the insurance coverage.

Due to early onset dementia suffers being to young, eligibility for Medicare is difficult. To qualify, a person must wait for 29 months after diagnosis and acceptance on Social Security for Medicare insurance.

Diagnosis for this disease typically tends to be on the average three years. This is because all other diagnoses need to be ruled out over other all other curable possibilities.

Once the diagnosis is made Social Security "Compassionate Allowances" steps in. This is a fairly recent ruling by Congress.

Awareness and assistance for these families needs to become paramount.


Thank you for sharing your story with us. I am in total agreement with you.

In fact, I have started another site, Dementia Care Secrets.
It is a site dedicated to all the dementia's. There will be a special section dedicated to early onset dementia in the future.

Diane Carbo RN

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