Marc E. Agronin M.D.

How We Age

Taking Action, Preserving Hope

An open letter to individuals facing possible Alzheimer's disease

Posted Jul 14, 2011

The ability to accurately diagnose Alzheimer's disease in its earliest stages is slowly becoming reality. As I discussed in a recent blog, a new type of brain scan may allow us to identify physical signs of the disease before symptoms are prominent or even noticeable. This possibility raises a serious concern: how will people react to the diagnosis? Imagine how you might feel if you tested positive for Alzheimer's disease and knew that you would begin losing your memory and other cognitive skills in the coming years.

I recently received an email from the daughter of a woman suffering from early stage Alzheimer's disease. She was worried because her mother had enough awareness of her evolving memory loss to understand where she was likely heading. She questioned me about what to tell her. Because I have conversations nearly every day with patients about memory loss, I took this challenge to heart. What do I want to tell people facing progressive cognitive impairment? And what message would I give to those facing a certain diagnosis of Alzheimer's disease before they've even begun to get symptoms? Here is my open letter to these individuals:

If you have been diagnosed with a memory disorder such as Alzheimer's disease, you may be full of questions about the future. And worry. Maybe even despair. These are natural reactions to having difficulty with memory and other mental skills. Some people with Alzheimer's disease feel embarrassed or upset in front of others–even close family and friends–and start to withdraw from social activities. Others have difficulty controlling their emotions or behaviors at times. Still others lack motivation to do many of the things they once loved. All of these changes are related to the underlying disease, which slowly but steadily affects normal brain functioning. It's hard to understand why all of this is happening. And it can be difficult to rely on others for help. As a doctor who studies and treats Alzheimer's disease, I know that there is not yet a cure for these changes. But there is still a lot that can be done to preserve the best life possible while we are searching for better treatments, and eventually a cure. And we are getting closer. Let me suggest three things that you can do now to improve your situation.

MAKE CERTAIN the diagnosis is correct. Some memory disorders are reversible. Not all are Alzheimer's disease. You must have a comprehensive evaluation that includes basic lab tests, a brain scan (MRI preferred), and neuropsychological testing in order to rule in or out certain causes and determine the exact type and degree of impairment and then track it over time. Too many people take a fatalistic attitude and don't get proper evaluation. The longer you wait, the less benefit you may get from existing treatments.

UNDERSTAND what is happening. Alzheimer's disease is a very slow progressive illness, measured in years and even decades. It does not happen overnight, but can unfold over an average of eight to twelve years, and often longer. That means there is time to make a difference; time to plan for the future, time to spend meaningful time with others, time to work on treating symptoms and continue searching for a cure. Understand that even while memory for everyday things–called short-term memory–may continue to fade, there are so many other skills that remain strong: long-term memories and skills, physical activity, humor, creativity, sensory enjoyment, intimacy, and the ability to give to others and enjoy kindness and understanding in return. As memory and other mental skills decline, most people with Alzheimer's disease focus less on what they are losing and more on the day-to-day experiences in front of them. If these in-the-moment experiences are pleasant and meaningful, the worry about memory loss tends to fade into the background.

TAKE ACTION to plan for the future and ensure the best course. First, make certain that you have chosen people to help with decision-making, financial management, and daily caregiving, even when it is not yet needed. Having caring and trusted people around who understand your preferences and wishes will make an enormous difference as the disease progresses. Protect your brain from further damage by adequately treating high blood pressure, diabetes, elevated cholesterol levels, sleep problems, depression and any other disorder that can worsen the symptoms and overall course of Alzheimer's disease. Many medications can worsen memory above and beyond what would normally be expected with the normal disease course. It is so important to have a trusted and caring doctor who knows you well and can manage all of these medical issues as they arise. Make certain that your home environment is safe and provides all of your needs. Have your family and doctor help you decide when driving is no longer safe. Exercise to keep as fit as possible and reduce the risk of falls. Eat a well-balanced, brain-healthy diet that includes lots of fruits and vegetables. Stay as socially and mentally active as possible, including attending programs that are geared for individuals with memory loss. All of these steps will enhance mental abilities and bring meaning and well-being, even in the face of cognitive loss.

HOPE for the future. The pace of research is increasing and there are many treatments for Alzheimer's disease being studied. There are medications already on the market that can stabilize or improve mental skills a little bit, and they are worth trying. They are not a cure, but even a small difference can go a long way. Learn about research studies and consider getting involved. While there are risks to any experimental treatment, they offer the only way for us to find an effective treatment or even cure. Perhaps most exciting are the new studies using antibodies and vaccines to help the immune system clear the brain of the toxic protein believed to be a central cause of Alzheimer's disease. One day we will have a cure in hand.

There is no reason to sit and let Fate take its toll. Take action, and stay hopeful!

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