| Dear Doc | 2017 Alzheimer's Clinical Care Guideline | New Additions to the Easton Center |
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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. This edition of our newsletter focuses on our clinical programs.[PDF Version]
” An Interview with Dr. Sarah Kremen on the Subject of Frontotemporal Dementia (FTD)”
Both frontotemporal degeneration (FTD) and Alzheimer’s disease (AD) are characterized by atrophy of the brain, and a gradual, progressive loss of brain function. After Alzheimer’s Disease (AD), frontotemporal degeneration (FTD) is the second most common form of dementia in people under the age of 65 and accounts for 10-20% of all dementia cases.
1. What are the different types of FTD?
There are three main categories of FTD:
- Behavioral variant FTD (bvFTD)
- Non-Fluent variant Primary Progressive Aphasia (nfvPPA)
- Semantic variant Primary Progressive Aphasia (svPPA)
2. Can you please discuss behavioral variant FTD?
Behavioral variant FTD (bvFTD) is caused by degeneration of frontal lobes and anterior temporal lobes of the brain. Historically, it was called Pick’s Disease, although the pathology associated with Pick’s Disease only accounts for about 20% of all bvFTD cases. BvFTD typically presents when people are in their late 50’s, although the age range varies widely from 20-80 at the extremes. People with behavioral variant FTD experience the gradual onset of behavioral and personality changes as the first signs of the disease. This may manifest as loss of empathy, loss of social graces, disinhibition, decreased initiative, and apathy. People may stop performing at work or hobbies, or may engage in rude behavior in social situations, without much regard for the consequences. These changes are usually very alarming to families, and often bvFTD patients are first evaluated by a psychiatrist before they see a neurologist.
3. Can you please discuss behavioral variant FTD?
People with bvFTD tend to be very impulsive and act quickly without regard to safety. They often develop a propensity towards sweets, such that they may eat a gallon of ice cream at a time, for example. They may also display compulsive behaviors, such as hoarding, or may engage in performing repetitive actions or repeating stock phrases.
4. What features make bvFTD different from AD?
Typically, we think of Alzheimer’s disease as presenting with a short-term memory problem where patients cannot learn new information. They may also have difficulties with word finding, or visual-spatial skills. Though patients with AD may exhibit decreased motivation or some depression, generally they retain their personalities and social graces. In contrast, patients with bvFTD may present with poor recall memory, but they actually can learn new information, and their visual-spatial skills are intact. The feature that stands out is the early behavioral change, and often times family members will comment that this is not the person they have known their whole lives.
5. What are the challenges of obtaining a proper diagnosis?
Obtaining the proper diagnosis for someone with bvFTD may be difficult because the behavioral changes are often commonly interpreted at first as depression, and so time is spent addressing this as the cause. It may take several years before a patient is redirected for a neurological evaluation. In addition, because bvFTD patients can perform well on screening tests, which mostly target memory and language, the fact that there is something wrong is easily missed.
6. Can you please discuss the language variants of FTD?
The language variants of FTD are different from bvFTD because they present as a primary progressive aphasia (PPA). By definition, this means that people experience language difficulties without any other cognitive or behavioral difficulty for 2 years. Nonfluent variant Primary Progressive Aphasia (nfvPPA) often starts as word finding difficulties and then progresses to the point where a person knows what they want to say but he or she has a really hard time getting the words out. This will often progress to mutism. People with this condition may experience comprehension difficulties, but not as dramatically as the difficulties in speech production. As the disease progresses the person might develop behavioral changes, such as apathy and lack of initiative. A person’s condition may also evolve into a related condition, such as bvFTD, corticobasal syndrome, or progressive supranuclear palsy. Nonfluent PPA accounts for 15% of all FTD cases.
7. What about semantic variant PPA?
People with semantic variant PPA experience a progressive loss of meaning for words and concepts, which manifests at first as a memory problem for words. People with this type of PPA have normal emotional and rhythmic sound to their speech but will have trouble finding a word. As time goes on, they develop more and more difficulties with word finding, word pronunciation, and they may make up words to refer to what they are speaking about. They also experience significant comprehension difficulties, making communication very difficult. In contrast to AD, their short-term memory for events and information is intact. Semantic variant PPA is caused by degeneration of the left anterior temporal part of the brain, which is believed to store information about what we know. Semantic variant PPA accounts for 15% of all FTD diagnosis.
8. What is the prognosis of a person diagnosed with FTD?
The prognosis after diagnosis of FTD is poor, on average 5-8 years for people with bvFTD, 8-12 years for semantic variant PPA and 11-12 years for nonfluent PPA.
9. Who does FTD affect more frequently- men or women?
FTD affects the same proportion of men and women, yet family history of dementia seen in half of the cases.
10. What medications are used for FTD?
No specific medications are FDA approved for FTD. A neurologist will try to manage behaviors with non-pharmacological methods, combined with medications that are typically used for other conditions. For example, if a person is experiencing repetitive or compulsive behaviors, they may be given medications used to treat Obsessive Compulsive Disorder.
11. What is the role of brain imaging in the diagnosis of FTD?
An MRI is used to look for brain abnormalities or injuries that might explain the behavioral or language changes seen on examination. Often stroke is a condition that is ruled out as a cause for these changes. Atrophy, or shrinkage, of the brain, without other types of brain injury or abnormalities, is supportive of a neurodegenerative condition, such as FTD. Atrophy of the frontal lobes is seen in bvFTD, left frontal atrophy is seen in nfvPPA, and left anterior temporal atrophy is seen in svPPA. An fdg-PET scan can be ordered if the doctor is suspicious of FTD and the MRI is not conclusive, or if a person’s presentation has features of FTD and AD, making diagnosis more difficult. In younger patients, amyloid PET imaging may be helpful because a non-elevated amyloid PET scan points away from a diagnosis of AD and towards FTD.
If you or someone you love is experiencing some of the above described symptoms of FTD, please call the UCLA Behavioral Neurology Program at (310) 794-1195 or visit www.ftd.ucla.edu to schedule an appointment with one of our neurologists.
In 2017, under the leadership of the California Department of Public Health (CDPH), a workgroup of Alzheimer’s experts, including Drs. Verna Porter and Sarah Kremen from the Mary S. Easton Center for Alzheimer’s Disease Research at UCLA updated the Alzheimer’s Clinical Care Guideline. The updated guideline provides recommendations based on the best available evidence for clinical care of people with Alzheimer’s disease and other forms of dementia.
The Clinical Care Guideline provides a roadmap for disease management, including assessment, care planning, education, support, and consideration of special issues. It focuses on improving care coordination and continuity of care. Each section of the Guideline includes activities that can be conducted by a primary care provider assisted by trained dementia care managers, nurses, or social workers, either within your healthcare system or from the community. The Guideline also discusses new government policies relating to people with Alzheimer’s Disease as well as emerging practice trends.
The sections of the Guideline recommend:
- Periodic and comprehensive assessment of the patient with cognitive impairment and documentation of their cognitive function, capacity to function independently, and more
- Care planning that includes disease education for the patient and family caregiver, treatment of emotional, behavioral, and/or mood symptoms, evaluation of safety issues, documenting goals of care, promoting healthy living, and referrals to clinical studies
- Education and support for the patient and family, including connecting families with disease education and community support organizations
- Time-sensitive important considerations for a progressive neurodegenerative disease such as advance care planning, capacity evaluation, elder abuse, driving, and eligibility for public benefits
To access the entire revised 2017 Alzheimer’s Clinical Care Guidelines please go to:
Please join us in welcoming our new members to the Easton Center.
Photo: Valencia Montgomery, Psy.D.
Dr. Valencia Montgomery joined the Neuropsychology Program as a postdoctoral fellow in August 2017 after earning her Doctorate in Clinical Psychology, with an emphasis in Neuropsychology, from Roosevelt University and completing a competitive internship at the VA Ann Arbor Healthcare System. Valencia comes to the Neuropsychology Program with excellent clinical and research training, having first-authored peer-reviewed articles, served as PI on several projects, and presented at numerous conferences domestically and abroad. She has also served as an adjunct instructor of psychology. She has received multiple awards and honors related to her teaching and research activities. Valencia is passionate about research and looks forward to collaborations across fields to better understand the course, diagnosis, and treatment of Alzheimer’s disease. We are delighted to welcome Valencia to the Easton Center!
Photo: Allison Diep, M.A.
Allison has joined the Mary S. Easton Center as the newest member of the Cognitive Neuropsychology Lab. She received her B.A. in Psychology from New York University and recently graduated with a M.A. in Clinical Psychology from California State University – Northridge (CSUN). During her undergraduate and graduate education, Allison worked as a research assistant in multiple research labs, studying diverse topics such as biracial face perception, non-conscious goal pursuit, and sports performance anxiety. She is excited to be a part of the important research being done here at UCLA studying Alzheimer’s disease and dementia. She hopes to learn a lot from her experience as a Staff Research Associate and eagerly anticipates the many opportunities to come!
Photo: Jennifer Thompson, B.A.
Jennifer joins the Mary S. Easton Center as a new member of the Cognitive Neuropsychology Lab. She graduated from Loyola Marymount University with a B.A. in Psychology. There she worked in an Educational Psychology Lab studying the correlation between K12 teaching practices and student learning outcomes. Before joining the Easton Center, she worked as a Behavioral Therapist for children with Autism Spectrum Disorder. She is excited about this new chapter at UCLA to gain experience with cognitive neuropsychology, which she found a passion for in her undergraduate studies. She looks forward to working with the Easton Center staff and embracing the learning opportunities ahead!
The prevalence of Alzheimer's disease (AD) doubles every five years beyond age 65 and more than 1/3 of people over 85 have Alzheimer’s or related dementias. The popular press often speaks of “living well into the 100’s”, but our lifespan will not meaningfully increase if the problems of Alzheimer's disease and brain aging are not solved. Many of the world’s leading physician-scientists are working at the Mary S. Easton Center UCLA on just that.
Along with treating some of the most complicated cases of AD, we conduct genetic studies, basic science (laboratory) research into disease pathways and progression, and rapid translation of discoveries and ideas into novel treatments from our drug discovery lab and clinical trials. The synergy between clinical medicine and basic science puts UCLA in a unique position to solve Alzheimer's disease.
The generosity of our donors allows the Mary S. Easton Center for Alzheimer's Disease Research at UCLA to honor its commitment to:
- Improve the quality of life for patients through compassionate care and access to participate in novel clinical trials;
- Discover new therapeutic treatments for Alzheimer's disease and related conditions;
- Continue the relentless pursuit of a cure.
Thank you to our donors who have made a difference at the Easton Center by accelerating the pace of our progress and ongoing research studies. Please join us to help the many families living with Alzheimer’s Disease and related dementias.
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.
The ENGAGE study is a Phase III clinical trial sponsored by Biogen of the investigational drug aducadumab. Individuals aged 50-85 who are diagnosed with mild cognitive impairment may be eligible to participate in this trial. The goal of the study is to assess whether aducanumab, a drug that targets brain amyloid, can reduce brain amyloid levels and slow memory loss associated with amyloid build up. Participants will be randomized to receive active drug or placebo (inactive substance) via monthly infusions. The study lasts approximately 2 years, which includes an 8-week screening period and 4.5 month follow up period once the investigational drug/placebo phase is completed. To learn more, please call (310) 794-6191 or visit www.eastonad.ucla.edu.
SUVN-502 Study with Donepezil and Memantine for the Treatment of Moderate Alzheimer’s Disease:
This phase II-a clinical trial will investigate whether the oral investigational drug SUVN-502 can enhance the cognitive effect of two FDA medications (donepezil and memantine) approved for use in patients with dementia. Individuals ages 50 to 85 with a diagnosis of moderate dementia who are taking the maximum dosages of donepezil and memantine may be eligible to participate. Patients will have a 60 percent chance of receiving the active study drug versus placebo (inactive substance). The study will last 26 weeks. To learn more, please call (310) 794-6191 or visit www.eastonad.ucla.edu.
Alzheimer’s Disease Neuroimaging Initiative 3 (ADNI3) Protocol:
ADNI3 (Alzheimer’s Disease Neuroimaging Initiative 3) is the fourth wave of a North American multicenter observational study launched in 2004, sponsored by the National Institute on Aging and the National Institutes of Health. The primary goal of this study is to discover, optimize, standardize, and validate clinical biomarkers used in Alzheimer’s disease research and clinical trials. This study seeks to enroll individuals ages 55-90, willing and able to undergo yearly test procedures including cognitive tests, questionnaires, brain imaging, blood draws, and spinal taps. Eligible individuals may have normal cognition with no memory concerns or have memory concerns and diagnosis of mild cognitive impairment or dementia due to Alzheimer’s disease. Participants will be evaluated on a yearly basis, for 2 to 4 years.
If you are interested in participating, please call (310) 794-6191 or visit www.eastonad.ucla.edu.
NEAT (Nicotinamide as an Early Alzheimer’s Disease Treatment) Study:
The NEAT study is a phase IIb clinical trial sponsored by a University of California Cures for Alzheimer’s Initiative grant, focusing on nicotinamide, a soluble form of vitamin B3. This 12-month study will investigate the safety and tolerability of daily high dose oral nicotinamide, and assess whether nicotinamide is able to reduce levels of phosphorylated tau found in spinal fluid. It will also assess whether nicotinamide is effective in reducing the rate of cognitive and functional decline. This study is for individuals aged 50-85 with a diagnosis of mild cognitive impairment or mild dementia due to Alzheimer’s disease. Participants will have a 50% chance of receiving the study drug vs placebo (an inactive substance).
To learn more, please call (310) 794-6191 or visit www.eastonad.ucla.edu.
Curcumin and Yoga Therapy for Those at Risk for Alzheimer's Disease:
Early-onset Alzheimer’s Disease Phenotypes: Neuropsychology and Neural Networks:
The Behavioral Neurology program is conducting an NIH-funded study to try to understand and clarify why some individuals develop Alzheimer’s disease at a young age. By understanding the reasons for early-onset Alzheimer’s disease, the investigators hope to shed light on what happens in Alzheimer’s disease at all ages. Participants will undergo neurological tasks, neuropsychological assessments, and a special MRI of structural and functional brain networks. The study is approximately 1 year long, with 3 visits within the first month and 2 visits at the 1-year follow up. Study participation is open to all patients with Alzheimer’s disease, but especially those diagnosed with early-onset Alzheimer’s disease (diagnosed before age 65). To learn more, please visit https://behavioral.neurology.ucla.edu/research.
The UCLA Caregiver Sleep (CARES) Study:
The UCLA Caregiver Sleep Study (CARES Study) is sponsored by the National Institute on Aging. The goal of the study is to examine the ability of Mindfulness Meditation versus Sleep Seminar to reduce caregiver distress, improve sleep, and promote changes in overall health in caregivers. As a participant in this study, you will either be randomly assigned to a Mindfulness Meditation group or Sleep Seminar group. Classes will be held weekly for 6 weeks. Once classes are completed, you will undergo 2 additional interviews over the next year about your general medical health and well-being and you will be asked to give a blood sample. Participants will receive up to $800 in compensation.
For information on other upcoming lectures and events, please visit the Easton Center Community Calendar.
New Approaches to Alzheimer’s Diseases
Date: Tuesday, January 16, 2018
Time: 11:30 A.M. (PST)
Join UCLA neurologist Verna Porter, M.D., for a discussion on the new approaches to diagnose and treat Alzheimer’s disease.
Register for the webinar >