I received an offer to ask a few questions of dementia expert John DenBoer who is behind a Netflix documentary on dementia premiering today at a venue in Phoenix before going on Netflix May 1.
It is called ‘This is Dementia.’
I will say upfront that I am pleased the doctor is inspired to push for more awareness after his caretaker experience with his beloved grandmother. I am still a little uncertain why there is not more discussion specifically of Lewy body disease, but I haven’t seen the movie yet.
If there’s an internal medical debate about what Lewy body is or even if it exists — some docs say it’s a different kind of Parkinson’s — let’s get to the bottom of it so we can properly research it.. DenBoer points out ‘vascular’ as a top type of dementia — as well as Lewy. Everyone agrees that Alzheimer’s Disease is No. 1.
He agreed with my worry about — and I’ve expressed it here before — a lack of awareness could hurt Lewy body’s quest for research dollars. A lack of awareness seeps into the whole system.
From the patient who can’t get a proper diagnosis to the patient rigged up to a brain stimulator which may be contraindicated for their particular type of disease. We need more doctors like DenBoer to keep asking these questions and, meanwhile, helping push non-invasive brain exercises to tamp down symptoms.
He’s also focusing on early diagnosis which I think may be the most important first step toward cure. The more time we have to study these patients and treat them whether its medications or brain exercises the closer we will get.
Here’s DenBoer with answers to 8 questions from me via email.
OLIVER: How did you become interested in studying dementia?
DENBOER: It was really a synthesis of a tough personal situation (my Grandmother, who I had a special relationship with, developing dementia) and my professional pursuit in the study of Geriatric Neuropsychology. These two things coincided, which galvanized my personal and professional mission to help people with dementia. My primary emphasis is to do this through early identification and mitigation of cognitive and functional decline.
OLIVER: Tell me about the Netflix documentary and what are some of the themes?T
DENBOER The documentary is entitled “This is Dementia.” It chronicles my relationship with my grandmother, my relationship with my patients, and my quest to impact this terrible disease. I feel that it is a realistic yet hopeful portrayal of the effect the disease has on people and their families.
OLIVER: There seems to be confusion over the types of dementia. I have Lewy body dementia, sometimes called dementia with lewy bodies. Can you briefly describe the differences in the types of dementia?
DENBOER: Dementia is an umbrella term to describe the general neurodegeneration of the brain. Alzheimer’s disease is the most common type of dementia, although vascular forms of dementia are also very common. Lewy Body dementia can also be fairly common. What makes this more complicated is that there are really no pure forms of dementia – all are typically combinations of each other.
OLIVER: What are the most promising areas of research for medications to stop or slow down the disease progression?
DENBOER: Unfortunately, research in the area of medications has not been very promising. By far the best way to slow down the disease is a combination of aerobic and cognitive exercise. Medication has been found to work at less than 5% efficacy. Unfortunately, there is nothing that we know of to stop the disease entirely.
OLIVER: My concern after learning of my diagnosis was that there was little awareness of Lewy body dementia, even though my understanding is that it is the second leading type of dementia after Alzheimer’s. This concerns me because if people don’t know about it they won’t get proper treatment – like Robin Williams who had Lewy body. Your thoughts?
DEBOER: Unfortunately, there is far too little awareness of all types of dementia. We do know about Alzheimer’s disease, although other forms of dementia (such as Vascular and Lewy Body) are forms that are not as well known. Our job as providers is to educate primary care providers of the important role they play in screening aging individuals and referring them to neuropsychologists and neurologists to perform more in-depth testing.
OLIVER: What also concerns me with Lewy that its lack of visibility will lead to less money for research than for example Alzheimer’s or Parkinson’s. Thoughts on that?
DEBOER: You could be right about that, unfortunately. When people think of dementia they usually only think of Alzheimer’s dementia. Honestly, I think this is a failure on the part of our national organizations (e.g., Alzheimer’s Association) to properly educate and promote awareness of the other (equally prominent) forms of dementia.
OLIVER: Any thoughts on what the causes of the various types of dementa are?
DENBOER: There are as many different causes of dementia as there are types. Each type of dementia has its own distinct etiology. The commonality across them all is the degeneration (i.e., shrinkage) of the brain. New and novel learning can help mitigate this decline (www.brainuonline.com).
OLIVER: What should people do first if they suspect that they or a loved one may have dementia?
DENBOER: The key is to recognize this as early as possible, prior to when they have dementia or mild cognitive impairment. MCI develops 5-7 years earlier, prior to the first beginnings of dementia. By the time people have noticeable symptoms of dementia the mitigative possibilities of the disease are greatly reduced. Typically, we can slow the decline associated with the disease if people are in Stage 2 or less. If people suspect that they themselves or a loved one may have dementia my suggestion would be to present to a neuropsychologist right away. Typically, the visit is covered by Medicare/insurance. They will undergo a 2-4 hour evaluation which will assess memory, attention/concentration, etc.. The neuropsychologist will tell you whether there is a suspicion of mild cognitive impairment or dementia. If there is, a visit to a geriatric neurologist is warranted; an MRI of the brain may be needed. All of this information will be used to make a diagnosis of MCI or dementia.A simple explanation of Lewy body:
Dr John DenBoer is a US-based dementia researcher and the creator of Smart Brain Aging (http://www.smartbrainaging.com/) – a company that helps delay the onset of dementia and reduce its severity, through a science-backed brain training program. Dr DenBoer was inspired to become an expert in the field after his grandmother was diagnosed. See www.smartbrainaging.com for more information.