Nov 23, 2009

Too many are exhibiting signs of Alzheimer’s without being diagnosed

I meet families on a regular basis, and met with thousands throughout my career. I am still surprised to meet with families who suspect their loved one has Alzheimer’s, yet have not had a comprehensive evaluation for an accurate diagnosis....

By Angil Tarach
Alzheimer's Reading Room

Bob DeMarco and I have both written articles on causes of dementia.

What we have reported is there are reversible and irreversible causes of dementia. Unless a person has a comprehensive evaluation by a geriatric specialist, you don’t know if the dementia is reversible. Worse, you cannot be certain that the diagnosis is correct or accurate.

As some of you know, I have 2 chronic incurable illnesses, Sjogren’s Syndrome, and Chronic Fatigue Immune Deficiency Syndrome.

It took five years to get an accurate diagnosis. It didn't happen until I finally found a doctor/specialist that was familiar with the symptoms I experienced.

It was difficult, frustrating, physically, and emotionally draining dealing with the unknown. As hard as it was to accept that I was suffering from two rare diseases, it was much more difficult to deal with the unknown. To be unable to take action, and get on with my life.

Once I was diagnosed I could accept what the future held, and release a lot of emotions, like fear, guilt, and anger. I could spend my time and energy doing what I could to make the best quality of life possible. Not only did I start feeling better emotionally, I found empowerment in understanding my illness.

I find families are often in denial about the possibility of Alzheimer’s.

Families refrain from an evaluation that may confirm their fear believing knowing will be worse. There are plenty of scientific studies that show this is not the case. Knowing makes people feel better, and allows them to make decisions rather than living with in a near perpetual state of fear.

Some forms of dementia are reversible. By suffering in silence and being in denial these families are denying their loved one the possibility of treatment.

If the diagnosis is Alzheimer’s, accepting this can allow you to prepare for the future, take action, and concentrate on the best quality of life possible.

One of the biggest fears in America is Alzheimer’s. A person suffering from Alzheimer’s can't be cured. However, some sufferers respond well to treatment and the currently available drugs. Without the drugs a person is more likely to deteriorate fast. This fast deterioration can rob the person of the opportunity to say what needs to be said, and to do things that need to be done.

Why not face the fear and do what can be done to slow the progression?

Many elderly patients have accepted a diagnosis of dementia or Alzheimer’s from a primary doctor who does not specialize in geriatrics or the diagnosis of Alzheimer’s disease.

I see physicians slap a label of Alzheimer’s on patient’s without a comprehensive diagnosis. Often these diagnoses are questionable. When that diagnosis becomes part of your medical history, it is very difficult to have that changed, if it turns out not to be the case. This is another reason why it is important to get an accurate diagnosis.

One patient I can recall in particular was diagnosed based on one memory test of recalling items the doctor verbalized. After a 20 minute conversation the doctor asked the patient to repeat the list of items. I don’t know about you, but I would have difficulty remembering several items after 20 minutes of conversation on other topics.

Was this fair to the patient? This inadequate evaluation resulted in a diagnosis of Alzheimer's. There is no evidence that would support this kind of test as being an accurate indicator of Alzheimer's disease.

As you can see, there are important reasons for a comprehensive evaluation by a geriatric specialist.

Finding a geriatric specialist isn't difficult. Most large hospitals have a geriatric department or a senior health department. If they don’t, ask for a phone number for a home health agency. Call their social work or nursing department and ask to be referred to a geriatric specialist for an evaluation.

When you call the specialist’s office ask about a comprehensive evaluation for a person with memory problems.

Don't be afraid to ask questions about the evaluation technique. The evaluation should consist of blood work, including a CBC, Electrolytes, Vitamin B12 level, liver and kidney function, and thyroid. A physical assessment and a mental status exam should be done using a combination of quantitative assessment tools that are industry standards for the diagnosis of Alzheimer’s/dementia. You can find a list of assessment tools in the Merck Manual of Geriatrics.

If your loved one has been diagnosed with dementia or Alzheimer's by a primary physician who does not specialize in geriatrics, get a second opinion from a specialist. A second opinion is always the best path to take.

If you have a physician diagnose you or your loved one with dementia, ask what type. You can read about the types of dementia is my article Understanding Dementia. related to Alzheimer’s and dementia on my blog.

A comprehensive evaluation and diagnosis from a specialist will begin the process of a better future for you and your loved ones, no matter what the outcome.

Original content Angil Tarach, Alzheimer's Reading Room