Expert: Michalene Peticca - 3/27/2007

Question
I am 35, in college for human services, and a widowed mother of two.  My sister and I are the primary caregivers for our grandmother, end stage AD, and frustrated.  For nearly 17 years our family has battled this disease with little or no help.  Until one month ago no private insurance (MVP) or medicare would cover anything regarding Nana's illness.  I contacted each and was told that AD was not classified as a mental illness nor a physical illness.  We could not get any home health care or in home physicians coverage.  My Pop has paid thousands out of pocket for medical equiptment (hosp. bed, lamb's wool, chucks, commode, wheelchair etc.)  Hospice, God Bless Them, has stepped in since pneumonia from aspiration in the last thirty days.  My sister has moved in to care full time.  I spend two thirds of my time there and my parents all of the time that they are not at work.  We have been exhausted, frustrated and angry over the last 16 years over the lack of responsibility to help take care of people like Nana in there homes.  If we had chosen to put her in a home it certainly would cost the Ins. Co.'s more than us at home for free.  Yet they wouldn't cover anything.  It has strained or obliterated many of our finances to keep her at home.  Hospice is wonderful but only here at the end.  Why is there no other assistance for early or middle care?

I have chosen the lack of responsibility to care for AD patients as my thesis paper.  We cannot be the only family to have battled this.  Any information that you could offer would be most appreciated.  I want change and as a human services student I want to share my findings with my fellow students.  Thank you for your time.

Answer
Hello Darby,

Thank you for writing.  I am very enthusiastic about your drive and committment to direct your frustrations at making the healthcare field a more "compassionate" one toward dedicated caregivers as your family.

It truly is a paradigm that exists in our society with regards to healthcare reimbursement.  On one hand, the government complains at the high costs, but then it doesn't want to invest in establishing reimbursements for more home care or "holistic" type approaches to caregiving.   

My thoughts? Off the record, i believe too many State and Federal officials that make the regulations and policies have Never taken care of someone with AD nor have they worked in the healthcare field.  I see it a lot with State surveyors when i get asked how are staff going to "fix" an AD individual from wandering ?   And, the surveyor is serious when asking me. I then have to give a very condensed neurology lesson on AD !!  

But, to answer a few of your questions.  It truly has only been within the last 10 years that Long term care insurance companies have recognized Alzheimer's disease as a "disease" and thus will pay for someone in a skilled nursing facility.  Likewise for Hospice as regarding end stage AD as "terminal".

Adult daycares, respite care and home health aides are private costs.  Because insurance companies base their rates of reimbursement on levels of "injuries" or "disabilities" (eg, a broken arm, a treatment needed for cancer,etc.)  it is very hard to Measure the physical deterioration of the brain in an AD person.  True, we could put the person through a PET scan which would show brain mass loss; however, because AD effects individuals differently it is hard to get a "checklist" of problems with the AD individual until they become compromised in their own ADL funtionings (eating, bathing, toileting, dressing) and that is usually late stage and thus, the beginnings of reimbursement because it is now Measureable.

Does this make sense?  

Your right, it is tragic and i see many, many people and families struggling to help their loved one.  

I wish you much success and a long career to change the system for the better!  If i can help you in any other way, please feel free to contact me on my company cell (717) 385-9855.

Best Regards!
Michalene Peticca, M.A.