Summer 2018 E-Newsletter

Summer 2018 UCLA Alzheimer's Research Center Newsletter

| Why I Participate | Why I Became a Pathologist |
| Clinical Trials | Caregiver Support Groups | Upcoming Events |

The Mary S. Easton Center for Alzheimer's Disease Research at UCLA has very active teams working on basic research, drug discovery, biomarkers for early diagnosis and clinical activity including clinical trials, cognitive testing and patient care. [PDF Version]


A Caregiver Shares Her Experience with Speaking Out about Alzheimer’s Disease

"This article is a continuous series entitled "Why I Participate," which will focus on involvement in our research and programs through clinical trials, support groups, and donations."

By: Kathleen T.
why speak out about Alzheimer’s diseaseA few months back I was asked if my husband and I would like to participate in the Early Memory Loss Forum sponsored by Alzheimer’s Greater Los Angeles. My husband was diagnosed with early Alzheimer’s disease in 2016 at the age of 59; it was a blow to everyone he knew and it turned our lives upside down. Now we want to change the face of this disease and bring awareness to as many people as we can. We want people to know that there is life beyond a diagnosis of Alzheimer’s disease.

The Early Memory Loss Forum is an all-day event for people with early memory loss and their care partners. The one we attended took place in Pasadena. It was fantastic! An elder law attorney spoke on legal and financial issues, experts addressed topics of the newest research and then there was a panel of people with early memory loss. My husband and I were a part of that panel. I was the only care partner speaking that day; the others on the panel were a medical doctor, a career Air Force officer, a former Sheriff, and my husband, a construction superintendent. Oh, did I forget to mention that all of the above were “former?” The one thing they all had in common was that they had been diagnosed with Alzheimer’s disease; from this, I learned that nobody is immune to this disease.

I was surprised by the number of people who came up and wanted to talk to me and ask questions after the panel presentation. So many of them seemed lost and just wanted to be pointed in the right direction. I realized that during this journey, I have found much of what we needed on my own. I participate in support groups; my husband and I both participate in research studies; and my husband also participates in a clinical trial. This gives me access to a number of people who are quite knowledgeable in the area of early memory loss. And, trust me when I tell you, I ask a LOT of questions.

When my husband was first diagnosed, our neurologist told us that we would be contacted by the care program. We didn’t get an appointment with them until nearly a year later. Now, I realize that we are lucky to even have access to that program, and I understand why there was a wait. But the beginning of this journey is very difficult. There are lots and lots of questions and many people don’t know where to go to get those questions answered. Neither our neurologist, nor the office staff, gave us information about resources, other than the care program. Given the opportunity, I would participate in other events like this, any chance I get, to be able to explain to others in similar situations what to expect and what is available. I really love being able to help, and I feel like I really did help some people with whom I spoke that day.

When I was asked to write this article, my understanding was that I was to write about the reasons we participated on the speaker’s panel. The short answer is that my husband and I both believe strongly in helping others. And I think that the more information that you have access to, from as many people as you can hear from, the more you can learn. Different people have different perspectives and as you go along your journey, you are able to take in different things at different times.

If you are interested in speaking up for people with Alzheimer’s disease and being a voice for this cause, please contact Alzheimer’s Greater Los Angeles (844) 435-7259, the Alzheimer’s Association (800) 272-3900, or your local Alzheimer’s organization.

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Why I Became a Pathologist?

An interview with Dr. Harry Vinters, Professor of Neurology, Pathology and Laboratory Medicine at UCLA.

Interviewed by: Monica Moore, M.S.G.

Dr. Harry Vinters

1. Why did you become a pathologist?

I was always interested in neuroscience and neurological diseases. I started training as a neurologist but found that as a neurologist, I wasn’t able to really address fundamental mechanisms of disease. I decided to do a year of training in neuropathology and I found it so interesting that I decided to stay in neuropathology. In neuropathology, I was able to look at structural changes in the brain that underlie neurological diseases.

2. What do you like most about being a pathologist?

I like the opportunity to see unique cases; every surgical and autopsy case is really quite unique in some way. I like that we are in an era where you can use very sophisticated techniques to look at tissue. We can do meaningful molecular testing and biochemical testing on human tissues. This new technology has opened a whole new world of investigation. Because of the whole genomics revolution, we can study how genes are expressed in human brain tissue.

3. Can you speak a bit on the role of pathology in a diagnosis, why is it important?

It used to be said that the only way to really make the diagnosis of Alzheimer’s disease was at autopsy. To a large extent, that’s still true, because you can only get a full sense of the pathologic abnormalities in the brain by looking at it. Now we have other tools through neuroimaging and PET scanning that give us quite a good idea of the abnormalities in the brain while someone is alive, but the only definitive way to assess the extent of the disease is through autopsy. The other thing we find is that since many people are now living to quite an advanced age, we find that there is very often what we call co-morbidity – meaning, they not only have Alzheimer’s but they have evidence of, for example, vascular disease in the brain or even tumors in the brain that contribute to their dementia.

4. Why should a family consider an autopsy?

Through an autopsy a family is able to get an understanding of the full extent of the disease in their relative. We are quite happy to meet with the family, either in person or on the phone, to explain the autopsy findings. I have done this on many occasions. In fact, I am meeting with a family in about two weeks to discuss some unusual findings in the autopsy of their loved one.

5. Do you often find that a diagnosis is changed due to the findings of an autopsy?

I wouldn’t say it changes it as much as it modifies or refines it. Very often a good clinician will have accurately made the diagnosis of Alzheimer’s but we will find some additional changes in the brain.

Dr. Vinters and Kazu6. If someone participates in a brain donation and you do the autopsy, the family gets a report. But do you also use that information for your own science and research?

Yes, we keep a database with all of the autopsy findings. When we have researchers who want to use tissues or cerebrospinal fluid (CSF) we make that available. A researcher might come to us and say, “I would like to study specimens with advanced Alzheimer’s disease, within certain parameters,” and we can help them with that.

7. How does one go about signing up for an autopsy?

An autopsy is never done unless it is consented to beforehand by the individual who has died or, more commonly, their family. That autopsy consent can be signed before the passing of the patient, which is legal in California, but not in all states, and then when that individual dies and we have that consent on file we can act on that immediately. The alternative is when the person dies, their family can then consent for the autopsy after their death.

8. Are clinical reports needed for a thorough autopsy report?

We can simply look at the tissue and render a diagnosis upon that, but yes, we do like to have the clinical history. And certainly, for cases that we present at our clinicopathologic conferences, we like to have detailed clinical history that we can correlate with the pathologic findings. We try to link the pathologic findings with the clinical phenotype or the clinical features the patient had.

9. What are the frequently asked questions for an autopsy?

There are many. For example, is the autopsy valuable even if a fairly long period of time has elapsed between the death and the autopsy? The answer is a qualified yes. It can still be valuable, but the longer period of time elapsed between death and the autopsy the tissue becomes a little less valuable for molecular study. The other question we are often asked is, will the removal of the brain disfigure the face or the head? And the answer to that is no. If the family wishes to have an open casket funeral that is not in any way prevented by the autopsy or removal of the brain.

10. Are brain donations compatible with most religions?

Some religions are more reluctant to allow removal of the brain at autopsy. Some religions request a clergyman to be present at the time of the removal of the brain and we are perfectly fine to have that happen. We have done many autopsies where the clergyman is in the room to watch the removal of the brain. Most religions do not have any prohibitions against the autopsy.

11. What are the costs associated with the autopsy?

For anyone who has been seen at UCLA medical center for any reason and has a medical record number, the autopsy is considered to be a part of the final evaluation of that patient. For families who request an autopsy or would like to donate the brain of someone never seen at UCLA before, there is a cost in processing the tissue. UCLA has a Decedent Affairs office that will coordinate the transportation of the body to UCLA for the brain removal and then will organize the transportation of the body to the appropriate funeral home or crematorium that the family wishes.

12. Can you tell us about the Alzheimer’s Center Brain Donation program?

We remove about 30 to 40 brains a year as a part of that. We sample 16 to 18 areas of the brain that we freeze, we examine cerebrospinal fluid and then the rest of the brain is fixed and examined to confirm the diagnosis. We then issue a detailed report. When the data is entered into our database, it is always done so in a way keeps the donor anonymous.

We are one of a fairly small number of accredited programs in neuropathology in the United States. It is very important for our trainees to learn about dementia because many of them will be in hospitals and will be asked to evaluate the brains of demented individuals so they become an integral part of the program.

We are very grateful to have the brain donation bank because we can learn a lot from studying the brain at autopsy, but more importantly we also aim to provide feedback to the families on what we find. I look at most of the autopsied brains from the dementia patients but other neuropathologists do as well. It is a very important source of information, research data and then very importantly we can discuss the findings with the families and in a sense, it gives closure to the families.

13. Do you have any final thoughts for the readers of the Easton Center newsletter on autopsy?

I cannot emphasize how important the donation of a brain is because many of the fundamental findings in Alzheimer’s disease that are the basis of modern research on it really came from autopsy material. We really believe it is a service to the family and to the scientific community when we remove the brain and study it and we are very grateful to the participants in the program.

If you would like more information about the Brain Donation Program, please contact Decedent Affairs at (310) 825-7846. If you are interested in the Whole-Body Donation Program, please call (310) 794-0372.

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Clinical Research Opportunities

If you would like to advance Alzheimer's disease research, please consider participating at the Easton Center. Below are the current recruiting trials. For a complete list of enrolling studies, visit our website at www.eastonad.ucla.edu.

EASTON CENTER KAGAN CLINICAL TRIALS PROGRAM

BEHAVIORAL NEUROLOGY PROGRAM

OTHER PROGRAMS

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Caregiver Support Groups

 

Our support groups are a collaborative effort between the Easton Center and the UCLA Alzheimer's and Dementia Care Program. They are FREE for family caregivers seeking a supportive environment in which to give and receive emotional and practical support from others who are on the same journey of caring for someone with dementia. For more information or to join a group, please contact Monica Moore at (310) 794-3914 or This email address is being protected from spambots. You need JavaScript enabled to view it..

(NEW)

Evening Alzheimer’s and Dementia Support Group
Date: 1st and 3rd Mondays of each month (Beginning Monday, September 17, 2018)
Time: 6:30 P.M. - 8:00 P.M.
Location: UCLA Medical Center, Santa Monica
1250 16th Street, Room G-210, Santa Monica, CA 90404


Young Onset Alzheimer’s Disease (AD) Telephone Support Group
Date: 1st Tuesday of each month
Time: 12:00 P.M. - 1:30 P.M.
Call-in Number: (415) 655-0003 (RSVP required for call-in access code). Click here for more information.

Frontotemporal Dementia (FTD) Telephone Support Group
Date: 3rd Tuesday of each month
Time: 12:00 P.M. - 1:30 P.M.
Call-in Number: (415) 655-0003 (RSVP required for call-in access code). Click here for more information.


Grupo de Apoyo Para Cuidadores de Pacientes con Alzheimer y Demencia – [en español]
Date: 2nd and 4th Wednesdays of each month
Time: 6:30 P.M. - 8:00 P.M.
Location: St. Sebastian Catholic Church
1453 Federal Avenue, Los Angeles, CA 90025

Click here for more information.

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Upcoming Events

 

For information on other upcoming lectures and events, please visit the Easton Center Community Calendar.

 

2018 Alzheimer’s Association | Walk to End Alzheimer’s® in Santa Monica, CA
Date: Sunday, September 23, 2018
Time: 8:30 A.M. - 12:00 P.M. (PDT)
Location: Tongva Park
1615 Ocean Avenue, Santa Monica, CA 90401

Held annually in more than 600 communities nationwide, the Alzheimer's Association Walk to End Alzheimer’s® is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research. This inspiring event calls on participants of all ages and abilities to join the fight against the disease! Please join us for Walk to End Alzheimer's® Santa Monica - Team Easton Center at UCLA.


Early Memory Loss Forum
Date: Saturday, September 29, 2018
Time: 9:00 A.M. - 3:00 P.M. (PDT)
Location: UCLA Medical Center - Santa Monica
1250 16th Street, Conference Center, Santa Monica, CA 90404

This interactive conference, sponsored by Alzheimer’s Los Angeles and the Mary S. Easton Center for Alzheimer’s Disease Research at UCLA, offers support, guidance and education to those diagnosed with mild cognitive impairment, early Alzheimer’s or related dementia, experiencing early memory loss, and their care partners or family members. For more information, please visit Early Memory Loss Conference.

Information: (844) 435-7259
Cost: $20 for general admission; $100 for professionals


2018 Alzheimer’s Los Angeles | walk4ALZ® in Century City
Date: Sunday, October 28, 2018
Time: 8:00 A.M. - 12:00 P.M. (PDT)
Location: Century Park, Century City
10100 Constellation Boulevard, Los Angeles, CA 90067

Walk4Alz® Los Angeles brings together local communities in the fight against Alzheimer’s and other dementias. For over 25 years, walk4ALZ® Los Angeles has raised funds to provide free care and support to tens of thousands of families throughout Los Angeles, Riverside, and San Bernardino Counties. Every dollar raised at walk4ALZ® Los Angeles stays in the communities we serve, with 20% of the net proceeds supporting local Alzheimer’s and dementia research. Whether you are living with dementia, caring for someone with dementia, lost someone to Alzheimer’s disease, or simply want to make a difference in our community, join us for walk4ALZ® Los Angeles - Team Easton Center at UCLA.


Our Newsletter Editorial Team:
Co-Directors of Training and Education Activities: Sarah Kremen, M.D. and Monica Moore, M.S.G.
Editor: Nancy Osuch, B.A.


Our mailing address is:
Mary S. Easton Center for Alzheimer's Disease Research at UCLA
710 Westwood Plaza, Room C-224
Los Angeles, CA 90095-1769
| http://www.eastonad.ucla.edu | Phone Number: (310) 794-3665 / Appointments: (310) 794-6039 |
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Copyright © 2018. Mary S. Easton Center for Alzheimer's Disease Research at UCLA. All rights reserved.

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