One of the Nation’s most admired past presidents first brought Alzheimer’s disease to the forefront. President Ronald Reagan announced to the world in 1994 that he was diagnosed with a condition called Alzheimer’s disease. Alzheimer’s disease is a progressive and (currently) irreversible disease of the brain. It begins by having difficulty with short-term memory but progresses until ultimately the person loses their ability to speak, swallow or care for their own needs. Although President Reagan gave a face to Alzheimer’s, I think there is still much confusion and misunderstanding about this disease.
“I do not have Alzheimer’s disease; I was tested last year and my doctor told me that I have dementia”. I have lost count as to how many times I have heard this statement from my patients (and their adult children). I hope by the end of this post that you will have a much better understanding of dementia and why this statement is both false and absurd.
Although people think that Alzheimer’s disease is different from dementia, it is in fact the most common form of dementia. Dementia is a broad term used to describe a group of neurodegenerative diseases. I often use Coca Cola to help my patients better understand the relationship between Dementia and Alzheimer’s disease. Think of dementia as a broad descriptive generalized term like “soda”. There are many different “types” of soda just as there are many different “types” of dementia. Most people would agree that Coca Cola is probably one of the most common and recognizable types of sodas. Alzheimer’s Disease is believed to be the most common “type” of dementia. Scientists estimate that Alzheimer’s comprises about 60-80 percent of all dementias.
What is Dementia?
Dementia is a neurodegenerative disease. Neurodegenerative means that certain parts of the nervous system (which is made up of our brain, spinal cord and peripheral nerves) stop functioning properly. With dementia (or in dementing diseases), it is our memory function (or brain) that is primarily affected. There are other neurodegenerative diseases that you have probably also heard of like Parkinson’s or Lou Gehrig’s Disease (amyotrophic lateral sclerosis-ALS). In these other diseases, different parts of the neurologic system are affected and degenerate.
What are the different TYPES of Dementia?
Alzheimer’s Disease: As I have already noted above, Alzheimer’s disease is THE MOST common type of dementia. Currently this disease affects an estimated 47 million people worldwide. Because a person’s AGE is THE biggest risk factor for this disease, the number of people worldwide affected by this disease is expected to increase to over 130 million by 2050. Alzheimer’s is thought to be caused by an abnormal accumulation of proteins (beta-amyloid and tau) within the brain. These proteins initially interfere in the brain’s ability to form new memories (short term memories), and then ultimately interfere in the brain’s ability to retrieve longer-term memories and then ultimately render the brain incapable of even performing basic functions like speaking, swallowing, walking and bowel/bladder control.
Lewy Body Dementia: This form of dementia is becoming a more commonly recognized type of dementia. Scientists estimate that this type of dementia comprises about 10-20% of all of the dementias. It is characterized by a triad of symptoms: Memory loss, parkinsonian symptoms and hallucinations.
Vascular Dementia: This type of dementia is sometimes referred to as multi-infarct or post stroke dementia. It is characterized by an abrupt change in memory function following a stroke. Its progression is usually described as a “stair-step type” decline. A person’s memory may decline significantly following a stroke and then remain stable for a period of time until there is another stroke, at which time it takes another significant decline. This type of dementia is estimated to comprise about 10% of all dementias.
THE OTHERS: These dementias include: Frontal Lobe Dementia, Alcoholic dementia, Creutzfeld Jacob disease, Huntington’s disease and many more.
Is there a Treatment for these dementias?
There is currently no cure for any dementia. There is also no known medication or treatment that is known to slow or reverse the disease once it is diagnosed. There are two classes of medications that have been FDA approved for use in the treatment of symptoms in Alzheimer’s disease: Cholinesterase inhibitors and NMDA receptor antagonist. Both of these drug classes have been approved for the treatment of symptoms associated with Alzheimer’s dementia but neither halt nor reverse the underlying disease process.
There have been many alternative medications and vitamins that have also been studied to help prevent or delay the progression of dementia. Unfortunately, there are no “proven” treatments in this arena that are available at this time either. Numerous studies have been performed by looking at statins, hormone replacement, Vitamin E and coenzyme Q 10 to name a few. The Alzheimer’s association has a good summary of alternative treatments.
What is the Prognosis?
Unfortunately, dementia is a progressive and fatal disease. The rate of progression in Alzheimer’s disease seems to be slower than other dementias such as Lewy Body or Frontotemporal dementia. The average life expectancy after diagnosis of Alzheimer’s is approximately 7-10 years. The natural history of this disease, however, is dependent on a number of factors, which include age at the time of diagnoses, other underlying medical conditions and the state of general health when the diagnosis occurs. I have several patients who are still in relatively good physical health who have had the disease for over 15 years.
What should I do if I am (or someone I care about) diagnosed with Dementia?
- Acknowledge the diagnosis and expect a roller coaster of normal emotions: Fear, Despair, Denial, Depression, Hope, and Anger.
Be supportive if you are the family member of someone who’s been diagnosed. If you are the one that has been diagnosed with dementia, try to rally support among family and trusted friends to help you through this rough time. There are often support groups available in communities if there are no family or friends nearby.
- Legal and Financial Planning
For most people who are diagnosed in the early stages of the disease, you are still very capable of making decisions with regards to your personal finances and legal affairs. Because Alzheimer’s disease is progressive, there will ultimately come a time when you are no longer going to be able to speak for yourself. Because of this fact, it is EXTREMELY important to set things up (while you are able and in the early stages of the disease) so that your wishes will be respected and honored. This will allow you to remain in control of yourself and of your estate (even when you ultimately lose your mental capacity to do so). It is also incredibly important to consider whom you trust and would like to be your decision maker when you lose that ability to make decisions for yourself. This is called a DPOA (Durable Power of Attorney). I discuss the importance of a DPOA in a previous post. Please refer to it to gain a better understanding of the importance of what it is.
3. Safety
Many people do not understand how a disease like Alzheimer’s can affect safety. Safety becomes a key factor that MUST be addressed in patients with Alzheimer’s disease. First of all, making sure that persons afflicted with dementia have adequate supervision to ensure their proper nourishment, hygiene and medication management are key. Secondly, some patient’s with Alzheimer’s disease have a tendency to wander and can get lost. I have seen a number of patients who were found on the side of the road or near railroad tracks-dehydrated and critically ill. A number of house fires have also been started because patients with memory loss forget to turn off the stove or accidentally light a match near an oxygen tank.
I once took care of a demented lady with 2nd degree burns to her face that she acquired by lighting her cigarette while she was wearing her oxygen. Her daughter had always been very careful to take her oxygen off whenever she accompanied her mother outside to smoke. She told her mother repeatedly that this needed to be done every time if she wanted to smoke. Unfortunately, one evening, when the patient was at home by herself, she did not know (or recall) the dangers of smoking around oxygen. Thankfully, the patient recovered uneventfully. These dangers exist because the Alzheimer’s patient is unable to recall these safety measures (regardless of how many times they are repeatedly told).
Another safety issue that most people with dementia often avoid talking about is driving safety. There are many states that have mandatory reporting requirements for physicians who diagnose patients with dementia. A diagnosis of dementia does not mean an automatic revocation of a driver’s license. However, there will eventually come a time that it will become unsafe for the patient and the public for the individual to continue to drive.
There are some warning signs that can help family/friends determine when someone may no longer be safe to drive. These are:
- Forgetting how to locate familiar places
- Failing to observe traffic signs
- Making slow or poor decisions in traffic
- Driving at an inappropriate speed
- Becoming angry or confused while driving
- Hitting curbs
- Using poor lane control
- Making errors at intersections
- Confusing the brake and gas pedals
- Returning from a routine drive later than usual
- Forgetting the destination you are driving to during the trip
In the early stages of dementia, there are programs that do exist that can help with driver rehabilitation and maintenance of driving independence for as long as feasibly possible.
Educating oneself about this disease is the best thing that you can do for yourself and/or a loved one. As previously mentioned, there are no cures. Because of its increasing prevalence, there is significant interest and funding going towards trying to discover a cure. There exists tremendous need for volunteers and donations to help treat current patients with this disease. So, if you have the ability and interest, please contact your local Alzheimer’s Association or Senior Center to see how you may be able to help!
As Former President Reagan said so graciously, ” I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead.”
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