What happens after an Alzheimer’s disease diagnosis?

By Micha Shalev

Are you kidding me, I have what!? It can’t be true. It has to be a mistake. When you first receive a diagnosis of Alzheimer’s, it can feel like the world is slipping away from you. It can be hard to move at all, much less stay positive and start making the future plans that will make the later stages of the disease easier for you and those around you. You are really angry. It’s normal to have these feelings but the important thing is to find ways to cope and continue to enjoy life.

There are several methods and diagnostic tools to help determine fairly accurately whether an individual with memory problems has possible Alzheimer’s disease, probable Alzheimer’s disease or some other memory or neurological problem.

Possible Alzheimer’s disease is defined as a dementia that could be due to another condition. Probable Alzheimer’s disease means there are no other causes for the symptoms that can be found. Some individuals with memory problems have a condition called amnestic mild cognitive impairment (MCI) that often precedes Alzheimer’s. Individuals with MCI have more memory problems than normal for individuals their age, but their symptoms are not as severe as those seen in Alzheimer’s.

Not all individuals with MCI develop Alzheimer’s. At this time, a definitive diagnosis of Alzheimer’s disease can only be determined by an autopsy of the brain after death. However, at specialized centers, doctors can diagnose the disease in a living person correctly up to 90 percent of the time.

A physician will diagnose Alzheimer’s in a living person by:

•Asking questions about an individual’s overall health, past medical history, ability to perform daily activities, and changes in behavior and personality.

•Conducting memory tests, problem solving, attention, counting, language skills and other abilities related to brain functioning.

•Carrying out medical tests of blood, urine or spinal fluid.

•Collecting information provided by family members or other caregivers about changes in a person’s day-to-day function and behavior which my help in diagnosis.

•Performing brain scans, such as magnetic resonance imaging (MRI), positron emission tomography (PET) scan or a computed tomography (CT) scan.

A complete diagnostic workup for the disease is lengthy and costly and may take as long as a year or more before a final diagnosis is made. After the diagnosis is made, the family and patient may need considerable guidance and counseling.

Family members often wonder whether they should tell their loved one about the diagnosis. While it is devastating to learn that your loved one has Alzheimer’s, it is frequently more stressful to be aware of the signs and symptoms and yet have no answer for the problem. The family and the patient should agree before the diagnosis is made so appropriate actions are taken. Not knowing always presents the risk of the person finding out accidentally. Physicians are advised to disclose the diagnosis to their patient.

Open and honest communications are usually the best, but some families choose a different path. Families often look to healthcare professionals for guidance. The American Psychiatric Association recommends advising Alzheimer’s disease patients and their families to engage in financial and legal planning as soon as possible, since the patient will likely eventually become incapacitated.

In the long run, most people find that the best thing to do with an Alzheimer’s diagnosis is to stay as proactive as possible —  and to try to keep a sense of humor.