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I don’t usually produce a daily post. So even though I posted yesterday, this morning’s national news coverage of Bruce Willis’ frontotemporal dementia diagnosis prompted me to post again and share some thoughts.

Those of us who are or have been dementia caregivers sympathize with him and empathize with his family.  Frontotemporal dementia is in the top five of about 200 subtypes of dementia. It is a difficult one to diagnose.

Last year, when the Willis family announced Bruce had aphasia I thought (and I am NOT a doctor) he must have some sort of dementia. I had never heard of aphasia  as a stand alone condition. Now, a year later, a dementia diagnosis has been announced. Frontotemporal dementia is progressive and irreversible. There is no cure.

His family wants to fight this and find a cure.  We all would like to be able to do that for our loved ones with dementia.  The difference is that their loved one is a major celebrity.  I mean that in a very positive way.

Remember how Katie Couric took on the heath insurance industry after her husband, Jay Monahan, died of colon cancer in 1998?  Now, for most of us, a colonoscopy is covered by our health insurer.   Remember when Michael J. Foxx was diagnosed with Parkinson’s disease?  To date, his Michael J. Foxx foundation has raised over a billion dollars for research and support for Parkinson’s patients.

One doctor who was interviewed this morning talked about the disease and also mentioned how difficult the care of the individual becomes for the family as dementia progresses.  Thank you.

In this country, caregivers of dementia patents provide hundreds of thousands of unpaid caregiving hours annually.  Had they been paid, they would have received billions of dollars last year.  Most families cannot afford more than a few hours a week of outside caregiving help.  The emotional and physical toll on caregivers is devastating.  I think of the caregiving situation as a quiet crisis.

The Willis family is beginning its long dementia caregiving journey.  I wish them well.

Maybe, through making their situation public, some attention and assistance will become available to families whose loved one is not a celebrity.

With love and hope, Jane