Thursday, September 10, 2009

The Most Important Alzheimer's Decision of Them All--Finding a Competent Personal Care Physician (Part One)


My name is Bob DeMarco, I am an Alzheimer's caregiver. My mother Dorothy, now 93 years old, suffers from Alzheimer's disease.

When Alzheimer's or dementia strikes you are likely to experience a feeling of hopelessness. The diagnosis often sends the caregiver into a tailspin that is impossible to describe. The rollercoaster ride of feelings, emotions, grief, and stress often paralyzes the caregiver.

This all happens at time when you will be making one of the most important decisions you might ever make--identifying a competent personal care physician for you loved one.

I want to say this clearly and concisely--only a tiny fraction of personal care physicians are trained or well versed in the treatment of Alzheimer's.

I can assure you, the vast majority of doctors will tell you they have, or are treating persons with dementia. Most people will then assume their doctor can give them all the help, advice, and medical care they will need in the many years ahead (often more than a decade). Assuming this could be a bad mistake that will cost you more than you could ever imagine.

You need a doctor that has training and an up to date education on dementia and Alzheimer's. Let's be candid here. Many doctors are in business to make money. As a result, they might not be taking the time to get educated on the latest treatments available. Most doctors that went to medical school ten years or more ago, probably had about 4 hours of training about Alzheimer's. There are exceptions to this rule. There are doctors that worked in an environment where Alzheimer's patients were being treated--but its still rare.

I wrote previously about how it took me 14 months, and 4 personal care physicians before I found a competent doctor to treat my mother. Unfortunately, our wonderful, excellent personal care physician, Dr. Carlos Chiriboga, recently suffered an untimely death.

I now understand that the first time around, I really didn't know what I was doing. I knew I had to find a family doctor that understood Alzheimer's. I thought at the time that I had developed an excellent plan to accomplish my mission. I was wrong. I didn't know what I was doing. This in spite of hundreds of hours of reading about Alzheimer's and treatments.

It is now almost six years later, and I know what to do (I just did it). I am going to share with you what to do when you find yourself in this most difficult position.

Where to look, and what to say. I am going to write this as if I was searching for a personal care physician for my mother.

Define your mission -- I am looking for the very best, most competent, personal care physician to care for my mother and treat her for Alzheimer's disease.

Now, where to look.

In many towns and cities there are groups that specialize in conducting clinical trials. These groups do the selection, treatment, and the collection of the data for a clinical trial. They are independent of the company that owns the rights to the drug being tested.

You could ask someone if they know anyone that works in the type of clinic I am describing. If not, go to ClinicalTrial.gov and enter the word "Alzheimer's" into the search box. Look for clinical trials that are actively recruiting new participants. On every clinical trial page they list the locations of all participating groups. If you find one that is near you, you are in business.

The groups that do clinical trials for Alzheimer's always have doctors and a neurologist on site. Before you get into any clinical trail you must go through an interview to see if you are a candidate. If you are a candidate they have to do a series of medical test before you can be admitted into the clinical trial. As a result, they have all the tools available to help you directly or to refer you to find "best, most competent, caring" personal care physician. I am not suggesting that you need to apply for a clinical trial. I am pointing you to a group of people that are fully invested in Alzheimer's treatments, and a result, know who is whom in your area.

You might get lucky and find the doctors you need right there. However, they might not accept your insurance, or there could be other obstacles. You are now at the point where you can tell them your mission, and find out who can help you accomplish your mission.

Once you find a doctor candidate you should ask this straightforward question--What treatment (drugs) would you prescribe for a person that has recently been diagnosed with Alzheimer's? If they answer Aricept and Namenda consider yourself fortunate. You have now identify a person that is up to date on the treatment that is now standard in the industry. If they give you a different answer, or hesitate it is time to move on. I feel strongly about this, as I write this.

Remember, if the doctors at the clinical trials office cannot help you directly, recite your mission statement to them and ask for guidance and a referral.

This is the end of part one.

Soon I will discuss additional ways to find a competent personal care physician. I'll also discuss what questions to ask, and how to determine if you have found the ONE.
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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. The Alzheimer's Reading Room is the number one website on the Internet for news, advice, and insight into Alzheimer's disease. Bob has written more than 800 articles with more than 18,000 links on the Internet. Bob resides in Delray Beach, FL.
Original content Bob DeMarco, Alzheimer's Reading Room