UCSF on YouTube- Videos on Caregiving Tips, Value of Autopsy

UCSF’s Memory and Aging Center recently launched a channel on YouTube. “The videos…are intended to educate patients, caregivers and health professionals about the various forms of neurodegenerative diseases.” The “goal is twofold: promote earlier, accurate diagnoses — in order get more patients into research studies and clinical trials; and to help families cope with these devastating illnesses.”

“The value of autopsy” video may be of interest to everyone. The four videos with “Practical Tips for Caregivers” may be of interest to all caregivers. Most of the dementia-related videos are very short. Over half of the videos are on FTD (Frontotemporal Dementia) and CJD (Creutzfelt-Jakob Disease).

You can find the channel or webpage here:

The introductory video is less than two minutes long: “Why YouTube: the effort to diagnose and treat dementias.” It features Dr. Bruce Miller.

There are 20 videos available at the present time. I believe more will be added over time. Let me know if you learn anything! Here’s what available today:

After watching some of these videos, online friend Nan said:

* I learned a crucial difference in alzh.disease and frontal-temporal-dementia….. Alzheimer’s robs memory, while FTD robs emotions.

* Another good point was that the patient seems to be”happily unaware” that he/she has a brain problem.  I’ve said even recently to a friend that perhaps a silver lining to the PSP cloud may be that my husband seems unaware of the severity of his limitations. I think inside their brain the pwpsp may not realize how very slowly they are moving, or how impaired their reasoning/judgement may be.   I have to scold myself for getting frustrated in saying the same thing to my husband day after day – such as, “wait until you feel the bed/or chair with your legs before you sit down.” He continues to just plop down unless we’re right there to assist. In all, the frustration is more on MY part most of the time. He seems to be oblivious to it. He also has to be told so frequently to step inside the U-step walker instead of keeping it so stretched out that he has no real control over it. He says it doesn’t ‘work” right, but that’s only because his arms are completely stretched out and he is standing at least arms’ length from it!!

* I learned from the videos that there are hundreds of kinds of dementia out there. I am amazed at that.

* Finally, from just watching 4 or 5 of the videos, I learned that a gait belt is very necessary in assisting the pwpsp in moving about. We’ve basically used his actual belt in the same manner they model, but I think we shouldn’t be doing that anymore!

I’ve given an overview below of the videos.




The value of autopsy 
Autopsy of CJD patients offers families closure, as it is the only means for providing a definitive diagnosis. Autopsied brain tissue is also the most valuable source of information for neuroscientists studying brain degenerative diseases. [Robin’s note: this video features Dr. Michael Geschwind. Though several specific things are said about CJD, the message in this video applies to all neurodegenerative diseases.] 
01:59 Practical Tips for Caregivers 
[Robin’s note: though several titles mention CJD, the videos themselves say nothing about CJD!] Tips on moving someone from the bed to a chair 
Occupational therapist Karen Gniadek and physical therapist Jennifer Woodruff demonstrate helping a CJD patient move from the bed to a chair. [Robin’s note: use of a gait belt is recommended.] 
01:36 Tips for helping a CJD patient sit up in bed 
Occupational therapist Karen Gniadek and physical therapist Jennifer Woodruff demonstrate helping a CJD patient sit up. 
00:48 Tips on changing the bed of a CJD patient [Robin’s note: though the title mentions CJD, this is not a CJD-specific video!] 
Occupational therapist Karen Gniadek demonstrates how to change the bed of a bedridden CJD patient. 

Tips for helping a CJD patient walk [Robin’s note: though the title mentions CJD, this is not a CJD-specific video!] 
Occupational therapist Karen Gniadek and physical therapist Jennifer Woodruff demonstrate helping a CJD patient walk. 


What is dementia? 
Dementia is a progressive, degenerative disease of the brain that affects multiple brain functions. Alzheimer’s disease is the classic disease, but there actually are hundreds of dementias. [Robin’s note: this video features Dr. Bruce Miller. He says there are probably 100 dementias.] 
00:40 – very short 

Dementia’s varying impacts on memory and emotion 
The two most common forms of dementia in people under the age of 70 are Alzheimer’s disease and frontotemporal dementia. The Alzheimer’s disease patient doesn’t remember what he had for breakfast. The frontotemporal dementia patient behaves abnormally — she’s inappropriately familiar with people, is indifferent to questions and speaks rudely. The explanation for the differences can be seen under the microscope. [Robin’s note: this seems to be a follow-on of the preceding short video.] 

Dementias: Caregiving and diagnosis 
Early diagnosis, early intervention and developing new therapies are the passion of UCSF neuroscientists. At the same time, they realize they will not have a cure tomorrow. A lot of their daily work involves taking care of patients, offering support to their families, protecting them from the bad decisions that might be made. “A lot of what we do is related to care giving and diagnosis.” [Robin’s note: this video features Dr. Bruce Miller.] 
00:36 – very short 

Dementia as a window into the mind 
The various forms of dementia affect different regions of the brain. Their impact reveals the role that the affected brain tissue normally carries out. Peer into the anatomy of the brain with a leader in the field. [Robin’s note: this video features Dr. Bruce Miller. The focus is on AD. FTD is also mentioned.] 
00:51 – very short 


FTD: the most common dementia in those under 60 
Frontotemporal dementia is an early-onset dementia, and is believed to be the most common form of dementia in people under the age of 60. It peaks in the 50s and 60s, in the prime of life. 
00:49 – very short 

Frontotemporal dementia offers insight into emotions 
Frontotemporal dementia usually emerges in the right side of the brain, where it causes dramatic changes in behavior and emotions, including disinhibition and apathy. When FTD emerges on the left side of the brain, it causes a slow disintegration of language and speech. In some of these patients, visual creativity emerges, even while their minds are deteriorating. Eventually the disease spreads across the brain. 

Loss of moral reasoning and sense of self in FTD 
Moral reasoning, like everything else that is complex and sophisticated in humans, involve Moral reasoning, like everything else that is complex and sophisticated in humans, involves the brain’s frontal lobes. The region is affected in frontotemporal dementia. Early in the disease process, FTD patients sometimes carry out illegal activities, such as embezzling and shoplifting, and display insensitivity to others. Overall, they lose their normal sense of self. 

Frontotemporal dementia’s affect on behavior and language 
Frontotemporal dementia has three major subtypes, which emerge in different regions of the brain. Early on in the disease process, one form affects behavior, another language abilities, another loss of words (usually beginning with animals). This latter form of the disease includes a subgroup of patients who experience a dramatic increase in visual creativity, even as their minds are deteriorating. 

Frontotemporal dementia: apparent in the workplace 
The ability to interact well with other people is generally a key factor in success in the workplace. The first signs of frontotemporal dementia often are revealed this environment. Patients make inappropriate comments, insult colleagues and fail to be sympathetic to other people’s concerns. 

Caregivers of FTD patients 
Frontotemporal dementia affects regions of the brain that cause aberrant changes in behavior and emotion. Loved ones face great challenges, first dealing with the puzzling symptoms and efforts to get an accurate diagnosis, and later facing the fact that the personality of the person they have loved is no longer present. The disease presents leaves families isolated and challenges by health care issues. 

Potential therapeutic targets in misprocessed proteins 
In dementias, nerve cells and the connections between them, die. Scientists believe that the abnormal accumulation of certain proteins within nerve cells are involved. In Alzheimer’s disease, there are plaques of amyloid protein. In FTD, there is clumping of a protein called tau. Recently, scientists discovered that a protein called ubiquitin is involved in some cases of FTD. Researchers’ long term goal is to determine the role of such proteins in the disease processes and, where appropriate, develop treatments that alter the structure or accumulation of the culprit proteins. [Robin’s note: this video features Dr. Adam Boxer. The focus is FTD.] 


CJD: a window into more common dementias 
Michael Geschwind, MD, PhD, of the UCSF Memory and Aging Center, discusses Creutzfelt-Jakob disease, a rare neurodegenerative diseases that offers a window into the more common forms of dementia, including Alzheimer’s disease and frontotemporal dementia. 

CJD: The Great Mimicker 
Creutzfeldt-Jakob disease is considered the “great mimicker.” Its effects, on many areas of the brain, cause symptoms also seen in other neurological diseases. They can include memory loss or difficulty with balance and walking, dizziness, behavioral change, visual disturbance, and involuntary movements. 

Symptoms of FTD often mislead caregivers 
The public knows dementia as a disease of memory loss, characterized by forgetfulness, an inability to keep track of personal possessions, a loss of navigational skills. This is the case in Alzheimer’s disease, but in frontotemporal dementia the early signs generally involve behavioral and emotional changes. As a result, caregivers some times don’t know to consult a neurologist. They seek guidance from church leaders, family practice doctors, counselors or therapists.