In case you had difficulty opening the remainder of this article from my newsletter, I decided to send this to you in it's entirety because it is "THAT" important!
Last Friday I attended the Many Faces of Dementia at USC.
I have been going to this for years and never contemplated the title until I sat down to write this newsletter. For those of you who have never read my newsletter before, "Welcome."
For those of you who have and who have attended my seminars, you already know that while Alzheimer's disease is dementia, dementia is not Alzheimer's disease.
Dementia is broad term that signifies a slow and progressive decline in cognitive function and which manifests itself in a wide variety of ways such as memory loss, loss of executive function (planning, organizing, managing time), delirium, etc. Alzheimer's disease is typically marked by memory loss. Alzheimer's disease is the number one cause of dementia and for the most part, it is age related.
Dementia does not discriminate; hence the many faces title. Like in years past, this year there was a panel of ordinary citizens (although in one case not so ordinary as she won a silver medal in track and field in the 1984 summer Olympics) who were in the beginning stages of Alzheimer's disease.
They were single and married, black and white, Christian and Jewish, young (48) and old. More than anything, they were brave to come and talk about their plight in front of 300 people. While it was very sad, they all understood that by getting an early diagnosis they were given the gift of an opportunity to plan.
Each one of them has put their legal affairs in order. Each one of them meticulously plans (with the help of their family caregivers) how they will meaningfully spend each moment of their day.
I will focus this on three speakers. Although there was a geriatrician who confirmed what I have been telling everyone all along "THERE ARE NOT ENOUGH DOCTORS TRAINED IN GERIATRICS TO UNDERSTAND HOW TO HELP OLDER ADULTS WITH MULTIPLE CHRONIC HEALTH ISSUES, ESPECIALLY ALZHEIMER'S DISEASE."
This will not change until we figure out a way to compensate doctors for the time that they must spend helping an older patient and their families. He made an interesting point that the neurologist is now becoming the primary care physician for older adults.
At this point in my career, I may understand my client's cognitive dysfunction better than a general practitioner.
Mild Cognitive Impairment
Speaker 1- Marilyn S. Albert PhD Director of the Division of Cognitive Neuroscience in the Department of Neurology at Johns Hopkins University School of Medicine and Director of the Johns Hopkins Alzheimer's Disease Research Center. Her focus is creating a universal means by which Dementia can be diagnosed so that clinical trials to treat the disease (still untreatable) will be more effective.
According to Dr. Alpert, there is no test that can definitively diagnose AD; all we have is a clinical probable or possible diagnosis. Moreover, although we can visualize plaques in the brain with imaging that is insufficient for a definitive diagnosis; many people have a tremendous amount of plaques and never go on to get AD.
According to Dr. Alpert, it is now generally accepted that AD is a continuum from normal to mild cognitive impairment to dementia; the prodromal or incubative phase referred to as mild cognitive impairment can be up to ten years. A lot of clinical trials have failed because the intervention is too late. Therefore, the ultimate goal is to intervene early when individuals are normal and the amyloidal protein that plays such a huge role in the disease process begins to accumulate.
AD treatments likely will require early initiation before irreversible brain tissue damage. This is why her research focuses on MCI and those individuals with memory problems who do not meet criteria for dementia.
Frontal Lobe Dementia
Speaker 2 - Bruce Miller, MD, Professor of Neurology at the University of California, San Francisco. His work in frontotemporal dementia (FTD) emphasizes both the behavioral and emotional deficits that characterize these patients. FTD is an umbrella term for a diverse group of uncommon disorders that primarily affect the frontal and temporal lobes of the brain.
These areas are generally associated with personality, behavior and language and that is why some people with this disease experience dramatic changes in their personality and become socially inappropriate, impulsive or emotionally indifferent, while others lose the ability to use and understand language.
FTD was once considered rare, but it's now thought to account for up to 10 to 15 percent of all dementia cases.
Although an MRI may play a key role in diagnosis because it can detect shrinkage in the brain's frontal and temporal lobes, a hallmark of FTD, according to Dr. Miller, there is no test or combination of tests that can definitively diagnose FTD. Currently it is a "clinical" diagnosis representing a doctor's best professional judgment about the reason for a person's symptoms.
That may be why FTD is often misdiagnosed as a psychiatric problem or as Alzheimer's disease (although AD usually presents itself much later (post 80) than FTD (between 40-60). Another difference between the two is that getting lost as well as hallucinations is common with AD but not characteristic of FTD.
Dr. Miller identified three types of FTD and each has unique manifestations. These are important to understand since the clinical diagnosis is based on these attributes:
Behavioral variant frontotemporal dementia (bvFTD) This heavily impacts personality and behavior and usually begins with subtle changes that may be mistaken for depression and progresses into disinhibition and a prominent loss of restraint in personal relations and social life.
These changes come about later with AD.
Primary progressive aphasia (PPA) In the beginning stages impacts language skills, but often also affects behavior as it advances. There are two forms of PPA and each has different symptoms. With the semantic type, speech comes easily but the complexity of their sentences is lost. With progressive non-fluent aphasia, it is difficult to generate words and speech becomes tentative and an individual's ability to read and write may be impaired. Although trying to recall word may be difficult, not making sense is not common with AD.
FTD movement disorders which causes shakiness, loss of coordination, frequent falls and generally affects certain involuntary, automatic muscle functions. Recent research suggests a possible connection between FTD and Lou Gehrig's disease, also ALS.
In the future, tests to detect specific protein abnormalities linked to Alzheimer's and FTD may help clarify the diagnosis in difficult cases.
Vascular Dementia
Speaker 3 - Dr. Helena Chui (who graciously took me to lunch at the faculty center) is internationally recognized for her research in Alzheimer disease and vascular cognitive impairment. She is the principal investigator for the NIA-funded Alzheimer Disease Research Center, as well as a multi-institutional program project on vascular dementia. Dr. Chui is the author of over 120 publications and has served on the editorial board for Stroke, Alzheimer Disease and Associated Disorders, and Archives of Neurology.
The emphasis of her research is on vascular dementia. According to her, the effects of vascular disease can cause a more subtle cognitive impairment than those who have Alzheimer's related dementia. It may occur in more small steps, stabilize and progress further. Research in this area is focused on trying to maintain the health of the blood vessels and therefore the health of the brain.
To be healthy and function properly, brain cells need a good supply of blood. Blood is delivered through a network of blood vessels called the vascular system. If the vascular system within the brain becomes damaged and blood cannot reach the brain cells, the cells will eventually die. This is what causes a stroke and can lead to the onset of vascular dementia.
A stroke is usually the result of a burst blood vessel (known as hemorrhagic stroke) or a blood clot (known as an ischemic stroke).
Damage to the vascular system can be caused by high blood pressure, heart problems, high cholesterol and diabetes. This means it is important that these conditions are identified and treated at the earliest opportunity. More importantly, those habits that increase the risk of these ailments must be changed. Effective treatment of these conditions may significantly delay or stop the development of vascular dementia.
The most common type of vascular dementia is called multi-infarct dementia, which is caused by a series of small strokes. These can be so tiny that the person might not notice any symptoms, or the symptoms may only be temporary. When vascular dementia develops after an obvious stroke, it is sometimes called post-stroke dementia (or 'single-infarct dementia').
Although the brain damage that causes vascular dementia cannot be reversed, it may be possible to slow the progression of the disease in a number of ways by taking medication to treat any underlying conditions, such as stroke, high blood pressure, high cholesterol, diabetes or heart problems and adopting a healthier lifestyle.
In conclusion, I spent an entire day at this symposium and it was a lot to digest. I am grateful to those who have dedicated their lives to figuring out how to best diagnose this disease so that we can stop it dead in its tracks and I still wonder how we, individually and as a nation, will physically and financially care for those stricken.
PLEASE MAKE SURE THAT YOU PUT YOUR ADVANCED HEALTH CARE DIRECTIVE AND POWER OF ATTORNEY IN PLACE FOR FINANCES SO THAT IF THIS HAPPENS TO YOU YOUR DIGNITY WILL BE SPARED.