Conquering Mountains AFTD Education ConferenceConquering Mountains AFTD Conference 2013 4 Breakout...

AFTD Education Conference &

Annual Meeting2013

Friday, April 12, 201310 a.m. - 6 p.m.

Salt Lake Marriott Downtown at City Creek75 South West Temple

Salt Lake City, UT 84101

Hosted by:

Conquering Mountains

AFTD Conference 2013

Special thanks to ourConference Sponsors:

Special thanks to our Conference Partner:

Raymond KoenigProgram Booklet Printing by:

Dear Friends,

On behalf of The Association for Frontotemporal Degeneration, I am pleased to welcome you to our 2013 Education Conference and Annual Meeting! This is a tremendously exciting time for our community, and we are glad you have joined us to learn about recent advances in FTD care and research.

Today you will also have the opportunity to connect with the other attendees: professionals, caregivers, patients and AFTD board and staff. I encourage you to make the most of this networking time, as it will give you a sense of the broader community that is working both on your behalf and with you, to change the future for those of us whose lives are touched by FTD.

This day would not be possible without generous contributions from our sponsors and caring individuals, including our conference coordinator and board member, Bonnie Shepherd. I would like to extend special thanks to Dr. Norman Foster of the University of Utah’s Center for Alzheimer’s Care, Imaging and Research (CACIR), whose support of this conference has been tremendous. The CACIR staff and additional colleagues at University of Utah have dedicated significant time to developing this program, and they join us today as facilitators and exhibitors. We’d like to thank our presenting sponsor, TauRx, for their support of our mission and efforts to find care and a cure. Additional financial support for the day has come from sponsors who are recognized on the previous page. To all of these generous partners, we give our sincere thanks.

Finally, if your personal circumstances permit, I encourage you to register with AFTD. Every individual that finds a way to contribute time, talent or treasure strengthens our community and speeds us to realizing our vision of:

A world where FTD is understood, effectively diagnosed, treated, cured and ultimately prevented.

Warm regards,

Beth WalterAFTD Board Chair

The Association forFrontotemporal DegenerationOpening the gateway to help and a cure

Table of Contents

The Day’s Program

Breakout Session Overview

Speaker Bios

Dr. Norman Foster - FTD Overview, Trends and Development

Clinical Trials

Breakout Session: Facing a New Diagnosis

Breakout Session: Managing at Home

Breakout Session: Partnering with a Facility

Breakout Session: Hospice and Late Stage Care

Breakout Session: For People with FTD

AFTD Resources

Partners in FTD Care

The “AFTD-Team”

Food for Thought

Volunteer with AFTD

Notes

To receive a certificate of attendance for NASW continuing education credits, please complete CEU evaluation form and return it to AFTD Program Coordinator Matt Sharp at the registration table. Evaluation forms are available with registration packet.

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The Day’s Program

Registration 9:00

Welcome 10:00 Beth Walter, AFTD Board chair

FTD Overview, Trends and Development 10:10-11:10 Norman Foster, MD, Director Center for Alzheimer’s Care, Imaging and Research, University of Utah

Hot Topics in the Field - FTD Drug Trials 11:15-11:45 Understanding and participating in emerging trials of potential disease-modifying treatments Jill Shapira, PhD, RN, Nurse Practitioner, UCLA Susan Dickinson, MS, CGC, Executive Director, AFTD

Lunch 11:45-12:45 AFTD Annual Meeting 1:00-1:30 Susan Dickinson, MS, CGC, Executive Director, AFTD

Reflecting Back and Moving Forward 1:30-2:00 Former caregivers share experiences - Katie Brandt, Mike Pope, Bonnie Shepherd Facilitator: Sharon Denny, MA, AFTD Program Director

Breakout Sessions 2:15-3:45 Break 3:45-4:00

Q&A Session - Ask the Expert 4:00-4:50 Martin Freimer, MD, University of Utah, Center on Aging Jill Shapira, PhD, UCLA Neurobehavior Clinic Edward Zamrini, MD, University of Utah CACIR

Musical Performance 4:50-5:10 University of Utah students Nick Shifrar, Steven Clark, Olivia Vessel & Ysa Pitman

Keynote Address: Reflections from a Survivor 5:15-6:00 Darlene Ryan, Executive Director, TECH Fort Worth

Reception 6:00-8:00 Hosted by AFTD Board Stay for food & drink and conversation with today’s speakers, AFTD Board & staff, and most importantly, each other.

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Conquering Mountains

AFTD Conference 2013

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Breakout Session OverviewEach session focuses on one phase of care for people with FTD. Transitions are never clearly defined; choose the session that fits best with your needs now or looking ahead. The breakouts include content on the topic and ample opportunity for interaction.

Facing a New Diagnosis: This session is for people adjusting to the changes a new diagnosis of FTD may bring. It will include a review and discussion of common symptoms of FTD and how to best manage them, and what resources exist to build a strong foundation for effective care.

Host: Debbie Fenoglio, AFTD Board MemberLed by: Kevin Duff, PhD, Neuropsychologist, Center for Alzheimer’s Care, Imaging and Research, University of Utah; Elizabeth Garcia-Leavitt, LCSW, Health Educator, University of Utah, CACIR

Managing at Home: This session will focus on meeting the challenges of living with FTD at home. Presentations and discussions will identify expected risks related to the unpredictable progression of the disease. This session will provide information and techniques to help people proactively address and manage them.

Host: Bonnie Shepherd, AFTD Board MemberLed by: Troy Andersen, MS, LCSW, Social Worker, CACIR, University of Utah; Sylvia Brunisholz, LCSW, CMC, Family Services Counselor, Alzheimer’s Association, Utah Chapter

Partnering with a Facility: It can be daunting to consider facility care because many long-term care programs do not understand FTD. Learn what to look for when considering placement, how to advocate, and ways to create a strong partnership among family and facility staff to ensure quality care.

Host: Kerri Barthel, AFTD Volunteer ManagerLed by: Allie Diamond, MSW, CSW and Randi Garvin, MSW, CSW, Directors of Resident and Family Service, Silverado Senior Living, Aspen Park; Sandi Grow, RN, caregiver

Hospice and Late Stage Care: Advance care planning and hospice can help FTD families tremendously in the late stages of the disease. This session will address approaches and resources that empower a family to make decisions and advocate for services that will enhance compassionate care.

Host: Matt Sharp, AFTD Program CoordinatorLed by: Kathie Supiano, PhD, LCSW, FT, Director, Caring Connections Program, College of Nursing, University of Utah; Sharlene Sweeney, Administrator, Inspiration Hospice

For People with FTD: This session is exclusively for people who have been diagnosed with any subtype of FTD. The goals of the session are to meet others with similar experiences and share ways you cope day to day. People with FTD who are able to participate in mutual support are encouraged to attend.

Led by: Sharon Denny, Program Director, AFTD; Howard Glick; Jill Shapira, UCLA Neurobehavior Clinic

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Speaker BiosTroy Christian Andersen, M.S.W., M.S., LCSW, Ph.D. candidate is a dementia specialist clinical social worker at the Center for Alzheimer’s Care, Imaging and Research (CACIR) at the University of Utah School of Medicine. He is pursuing his Doctorate in Social Work with an emphasis in developing proactive dementia care services for individuals in the early stages of the disease and other aging related topics. At CACIR, Mr. Andersen collaborates with cognitive and movement disorder neurologists, neuropsychologists, nurses and research coordinators providing medical social work services to patients with progressive forms of dementia and their caregivers and families.

Katie Brandt, M.M. has a Master’s degree in non-profit management. In 2009, Katie’s husband Mike was diagnosed with FTD at the age of 29. Katie supported Mike through every stage of his struggle with FTD, managing support from friends, family, adult daycare, residential placement, and ultimately, hospice care. Since Mike’s passing in April of 2012, she has spoken at colleges and conferences detailing how FTD has impacted their family and the associated legal, financial, logistical and emotional challenges. Katie is also the full-time caregiver for her father who has early onset Alzheimer’s, co-facilitator of the Boston area FTD Caregiver Support Group, and Volunteer Regional Coordinator for New England. Katie’s most important role is that of mother to her joyful five-year-old son Noah, who reminds her of Mike every day.

Sylvia Brunisholz, LCSW, CMC provides assessments, support, referrals, education and counseling to caregivers, care recipients, and the community regarding Alzheimer’s disease and other types of dementia as the family support counselor and program manager for the Alzheimer’s Association. She was hired to implement a federal grant throughout Utah to provide counseling to caregivers and has developed innovative interventions such as “Making Sense of Alzheimer’s” with the Utah Symphony and the “Retreaters” respite program which has enriched the lives of caregivers and care recipients.

Allie Diamond, M.S.W., CSW has worked since 2003 in long-term care, hospice/home-home care and in community advocacy roles intended to improve the availability of home and community based services. Allie has a Master’s degree in Social Work from the University of Utah. She is Director of Resident and Family Services at Silverado Senior Living, a Specialty Alzheimer’s Community in Salt Lake City. Her job allows her to incorporate two of her great loves- dementia care and animal advocacy into her career.

Susan Dickinson, M.S., CGC joined AFTD as Executive Director in February 2008. She is a certified genetic counselor who brings more than 20 years’ experience facilitating communications among lay, scientific and medical communities. During her tenure at AFTD, the organization has implemented an aggressive strategy for growth, more than tripling its budget and expanding its professional staff from 3 to 9. Susan holds an MS in genetic counseling from Arcadia University and a BA in biology and psychology from Swarthmore College.

Sharon S. Denny, M.A. is the Program Director at AFTD where she spearheads support and education services. Her priorities include ensuring the responsiveness of the HelpLine and expanding information and resources. SShe has introduced initiatives that address the needs of families with children, expand professional education and explore the support needs of people with FTD. Sharon has a Master’s degree in clinical psychology and more than 25 years’ experience in program development with nonprofit organizations that serve people with medical and psychiatric disabilities. She has been with AFTD since September 2008.

Kevin Duff, Ph.D. has specialized in neuropsychology for over 10 years and received his Ph.D. in Clinical Psychology from the State University of New York in Albany. In 2009, he joined the University of Utah as Associate Professor of Neurology and neuropsychologist for Alzheimer’s Care, Imaging and Research. His current research has focused primarily on the early identification of cognitive decline in neuropsychiatric illnesses. Dr. Duff ’s work has been widely published in scientific journals and he has lectured nationally and internationally on his areas of expertise. His research on Mild Cognitive Impairment has been funded by the National Institutes of Health since 2005.

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Randi Garvin, M.S.W., CSW is Director of Resident and Family Services at Silverado Senior Living Aspen Park Rehab. Randi has worked in a variety of medical fields for over seven years including home health, hospice, long term care and DME. Randi graduated from BYU in 2009 with her BSW and the University of Utah in 2011 with her MSW. She did internships at the University of Utah Medical Center on their Acute Rehab Unit and Alpine Hospice. Randi is passionate about working with the elderly and advocating for their right to autonomy and dignity through the aging process.

Norman Foster, M.D. is a board-certified geriatric neurologist and Professor in the Department of Neurology, Chief of the Division of Cognitive Neurology, Director of the CACIR, and Senior Investigator for the Brain Institute at the University of Utah. In 2005, he helped establish the Center for Alzheimer’s Care, Imaging and Research (CACIR) at the University of Utah, the Intermountain West’s first academic clinic devoted to Alzheimer’s disease and related disorders. Dr. Foster completed his MD at Washington University in St. Louis, did his neurology residency at the University of Utah, and a three-year fellowship in Experimental Therapeutics at the NIH’s National Institute of Neurological and Communicative Disorders and Stroke in Maryland. For the past 30 years Dr. Foster’s research has focused primarily on brain imaging, clinical drug trials, and the clinical features and pathophysiology of neurodegenerative disorders such as Alzheimer’s disease and frontotemporal dementia. His work has been widely published in leading medical and scientific journals and he has lectured internationally on his areas of expertise.

Martin Freimer, M.D. is a board certified geriatric psychiatrist. Dr. Freimer conducts inpatient psychiatric evaluations at the University Hospital and the University of Utah Neuropsychiatric Institute (UNI). In early 2013, he began providing outpatient consultations for management of behavioral disturbance to patients with neurodegenerative disease at the University’s Cognitive Disorders Clinic, and to rural Utahans through the University’s telehealth network. Dr. Freimer received his medical degree from the Medical College of Ohio and interned at the Baylor College of Medicine in Houston before moving on to the University Of Iowa College Of Medicine, where he completed his residency in Psychiatry. He has also completed postdoctoral fellowship programs at the University of Iowa College of Medicine (NIMH Genetics, Psychiatry) and University of Rochester School of Medicine (Microbiology).

Liz Garcia-Leavitt, LCSW is a clinician and Health Educator for CACIR at the University of Utah. She is a mental health practitioner and geriatric care manager who has worked with older adults and their families for many years. Prior to joining CACIR Liz worked with individuals and families dealing with dementia through Jewish Family Service’s older adult programing and the LDS hospital Senior Cognitive Clinic and is passionate about improving quality of life for individuals with dementia and their loved ones.

Howard Glick spent 6 ½ years being unsuccessfully treated for bi-polar disorder until 2010 when he was diagnosed with FTD. After an initial adjustment to his new diagnosis, Howard decided to devote his energy to raising awareness and helping others also diagnosed with FTD. Howard writes a blog about his experiences that has exceeded 51,000 page views and moderates a Facebook group for people with FTD that has 52 members. Since September 2011, he has been working with thinkfilm, inc on “Howard’s Brain,” a film that will help the public understand FTD from a patient’s point of view. Howard, once a successful businessman, is a divorced father of two who lives in New York and manages his own care.

Sandi Grow, RN continues to work as a nurse while caring for her husband, Karl, who was diagnosed with FTD in March of 2007 at age 54. His care has involved the use of various community care settings at an early stage of the disease. They have had experience with several day services programs, home care, assisted living and now long-term care facilities. Sandi has learned to effectively combine advocating for Karl’s needs and helping staff to understand FTD better. Sandi is a member of AFTD’s Long-Term Care Education Committee, contributes to the Partners in FTD Care initiative and co-facilitates the FTD caregiver support group in Canton, Ohio.

Mike Pope shared a wonderful life with his wife Karren since their marriage in 1963. In 2004, FTD began to raise its ugly head. Nearly two years into the disease, Mike found the FTD support group and through them was able to acquire some help from Salt Lake County aging services. Karren lost her fight with FTD on January 12, 2012. Mike, a veteran who served four years in the United States Air Force, graduated college in 1970 with a degree in electronics and electricity, now teaches First Aid, CPR, and Defensive Driving for The Utah Safety Council and serves as a volunteer for Jewish Family Services and delivers Meals on Wheels.

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Jill Shapira, Ph.D., RN earned her Bachelor’s degree in nursing and Master’s degree as a nurse practitioner at the University of California, Los Angeles. In 2002, she earned a PhD in Medical Anthropology from UCLA. Dr. Shapira has 30 years of experience working with dementia patients and their caregivers, and for the past 12 years has worked with Dr. Mario Mendez in the UCLA FTD and Neurobehavior Program. Together they share a passion for understanding how FTD alters the social and emotional behavior of patients and impacts upon social relationships with their families.

Bonnie Shepherd lost her husband Ned to FTD in 2011. She was his primary caregiver for five years, during which time she became a successful advocate for increasing the quality of care for people with dementia and cognitive impairments due to terminal neurological disease. She has worked closely with the Utah Alzheimer’s Association, local government and state agencies to insure that the needs of those suffering from non-Alzheimer’s disease are heard and met. Throughout, Bonnie has facilitated a monthly support group for FTD caregivers in the Salt Lake City area and educated healthcare professionals, including hospice providers, on FTD and how to provide appropriate care for her husband.

Shar Sweeney is the Director of Support Services for Inspiration Hospice in Salt Lake City. She manages the social workers and chaplains, directs the bereavement and volunteer programs, and is responsible for HR. Shar built Inspiration’s volunteer program from the ground up and developed their acclaimed 11th hour program, ensuring that no patient has to die alone. Shar has worked in hospice for over ten years and is passionate about the service it provides to patients and families at a time when they need it the most.

Katherine P. Supiano, Ph.D., LCSW, FGSA, FT is an Assistant Clinical Professor in the College of Nursing, and the director of Caring Connections: A Hope and Comfort in Grief Program at the University of Utah College of Nursing. She teaches Interdisciplinary Approaches to Palliative Care for graduate students in Pharmacy, Social Work and Nursing, Geriatric Care Management and Advanced Physiology and Psychology of Aging to graduate students in Nursing and Gerontology. She has been a practicing clinical social worker and psychotherapist for over 30 years. Her clinical practice has included care of older adults with depression and multiple chronic health concerns, family therapy, end-of-life care, and bereavement care. Dr. Supiano is a Fellow in the Gerontological Society of America, a Fellow of Thanatology, and a founding member of the Social Work Hospice and Palliative Care Network. She received her Ph.D. in Social Work at the University of Utah as a John A. Hartford Foundation Doctoral Fellow.

Darlene Ryan, M.B.A. is Executive Director of Tech Fort Worth, a nonprofit business incubator in Fort Worth, TX, that helps people start businesses around technologies including new drugs and medical devices. She earned her MBA from the University of Chicago in Accounting and Finance and has been a CPA for over 30 years and one of the first female partners at Arthur Anderson, the largest worldwide accounting firm at the time. In 2003, Darlene’s husband Dick was diagnosed with FTD. She quickly learned how to balance: caring for her husband and their teenager, running a business, while watching out for her grandmother, mother and herself. Darlene has been an AFTD Board member and treasurer, and is currently the chair of AFTD’s audit committee and facilitates a FTD caregiver support group in the Dallas/Fort Worth area. In the three years since Dick’s death, Darlene has gained a new perspective on those difficult years of living with FTD and looks forward to sharing some of what she has learned.

Edward Zamrini, M.D. is board certified in Geriatric Neurology and Behavioral Neurology & Neuropsychiatry. He has over 24 years of experience in clinical care, education and research for Alzheimer’s and related neurodegenerative diseases. He is Professor of Neurology at the University Of Utah School of Medicine in the Center for Alzheimer’s Care, Imaging and Research (CACIR), where he served as Director of Clinical Trials from 2006-2011. Dr. Zamrini sees patients in the Cognitive Disorders Clinic, where he is keenly interested in improving early diagnosis and developing proactive interventions to benefit both patients and caregivers. Dr. Zamrini has served as an investigator in well over 50 clinical research studies and has published and lectured extensively on his areas of expertise. After receiving his medical degree from the University of Beirut in Lebanon, Dr. Zamrini interned at Brooklyn’s Lutheran Medical Center and completed his residency at New York’s North Shore University Hospital, where he was chief resident of Neurology.

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pg. 1 AFTD Education Conference and Annual Meeting, Salt Lake City, 2013

FRONTOTEMPORAL DEGENERATION: OVERVIEW, TRENDS AND DEVELOPMENTS

Norman L. Foster, MDDirector, Center for Alzheimer’s Care, Imaging and Research

Chief, Division of Cognitive NeurologyProfessor, Department of Neurology

Senior Investigator, The Brain InstituteUniversity of UtahSalt Lake City, UT

Advances in recognizing and understanding frontotemporal degeneration (FTD) over the past decade have been breathtaking. Since molecular brain imaging in 1987 first allowed investigators in Lund, Sweden to unequivocally recognize during life the characteristic clinical features of what they termed “frontotemporal dementia of the non-Alzheimer type”, we have defined the molecular genetic causes and defined the therapeutic targets of the disease (Gustafson, 1987). In equal part revolutionary advances in patient management and family support have developed, immeasurably improving quality of life despite the inevitable advance of disease. The goal of this talk is to provide a common reference of basic knowledge and then review some of these conceptual and practical advances. Progress in FTD is accelerating and we are justified in our increasing hope of a brighter future for those with FTD.

Definitions

Cognitive complaint is the symptom that there has been a change in thinking abilities. Some people with significant brain disease may not recognize symptoms that others observe. Consequently, physicians depend upon a family member or knowledgeable informant to determine when cognitive symptoms are present. In some cases a mental status examination will not find that cognitive complaint isn’t significant.

Cognitive deficit is present when there is objective evidence from beside or neuropsychological testing that there is a significant change in thinking ability. When a cognitive deficit is present it is important to determine its cause.

Mild cognitive impairment (MCI) is the presence of a deficit in one or more cognitive domains, such as language, judgment, visual processing, motivation and attention, personality and memory, that is insufficiently severe to interfere with the ability to perform usual daily activities. MCI is often a precursor of dementia. MCI is a syndrome, or group of symptoms, rather than a disease; determining the cause of MCI is important.

Dementia is the presence of a deficit in TWO or more cognitive domains, such as language, judgment, visual processing, motivation and attention, personality and memory, sufficiently severe to interfere with the ability to perform usual daily activities. Dementia is a syndrome, or group of symptoms, rather than a disease; determining the cause of MCI is important.

Alzheimer’s disease (AD) is the most common cause of dementia in the developed countries. Gradual onset of progressive memory loss is usually the first and most prominent symptom throughout the illness. Eventually other cognitive domains become affected including language, judgment and behavior. The prevalence of AD increases dramatically with increasing age. Most patients with AD develop symptoms after age 65. It is caused by an abnormal accumulation of proteins, abeta and hyperphosphorylated tau, causing plaques and tangles, respectively.

Frontotemporal degeneration (FTD) is the second most common cause of dementia under age 60 (after AD). It also can begin after age 65, but in these age groups it is much less common and much less frequent than Alzheimer’s disease. Gradual onset of progressive language impairment, poor judgment or personality change is the first and most prominent symptom. It is often misdiagnosed as a psychiatric illness or Alzheimer’s disease. It has several causes all of which lead to an abnormal accumulation of one or more proteins.

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Molecular Causes of FTD

Over the past several years we have come to divide FTD into 2 flavors based upon the predominant abnormal protein that accumulates – FTD due to tau protein, called FTD-T, and FTD with ubiquitin clumping, called FTD-U.

FTD-T includes not only patients with predominant behavioral and language disturbance, but also those with major motor problems – diseases known as progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD). This linked FTD, traditionally consider a cognitive disorder, with important diseases traditionally described as movement disorders. The gene for tau is on chromosome 17, thus familial frontotemporal degeneration with parkinsonism linked to chromosome 17 or FTDP-17.

FTD-U is even more complicated. Some FTD-U is caused by a mutation in the progranulin gene. By chance, the progranulin gene is located on chromosome 17 very close to the tau gene. Progranulin appears to be required to keep the frontal cortex healthy, so all of this made a lot of sense. This was another type of FTDP-17. The fact that two genetic problems causing FTD both occurred on chromosome 17 caused a lot of confusion for a while.

However, some FTD-U remained unexplained and did not seemed to be due to a genetic problem on chromosome 9 rather than chromosome 17. Recently, a major advance linked FTD-U to neuromuscular disease. For a number of years it was known that some patients with FTD developed Lou Gehrig’s disease or amyotrophic lateral sclerosis (ALS). Patients with ALS accumulated the protein TDP-43 in their cells and TDP-43 accumulated with ubiquitin. It was also observed that some patients with ALS developed dementia. Now we know that accumulation of the protein TDP-43 explains these overlaps. TDP-43 accumulates with ubiquitin and explains many cases of FTD-U. Recently mutations in the gene C9orf72 found on chromosome 9 explained cases of FTD-U that didn’t have progranulin mutations (DeJesus-Hernandez et al., 2011). These recent findings have caused a flood of productive research with fascinating results.

In conclusion, FTD-T is caused by an accumulation of tau; FTD-U can be caused by problems with C9orf72 or progranulin. FTD is not just a cognitive disorder, but sometimes is also a movement disorder and sometimes it can also be a neuromuscular disorder.

New Clinical Criteria Improve Diagnostic Accuracy and Certainty

Language-predominant FTD – consensus diagnostic criteria have been developed that classify language predominant FTD into 3 categories based upon speech characteristics: non-fluent / agrammatic, semantic, and logopenic progressive aphasia (Gorno-Tempini et al., 2011).

Behavioral variant FTD – improved diagnostic criteria have been developed based upon an international consensus. The criteria have been verified by a careful review of clinical and imaging records in 176 autopsy-confirmed cases of FTD patients with predominant behavioral disturbance and personality change (Rascovsky et al., 2012).

Metabolic Brain Imaging with FDG Improves the Accuracy and Certainty of FTD

Dementing diseases cause selective neuronal and synaptic damage leading to characteristic changes in glucose metabolism, which can be measured with the positron emission tomography (PET) tracer 18F-fluorodeoxyglucose (FDG-PET). Under normal circumstances, glucose is the sole energy source for the brain and glucose uptake primarily mirrors local synaptic activity. Since neurofibrillary tangles, neuritic amyloid plaques, and Lewy bodies don’t directly affect synaptic function, the pattern of hypometabolism doesn’t necessarily reflect their distribution. There is increasing evidence that synaptic damage occurs early in neurodegenerative diseases and probably underlies the initial clinical features. As a result FDG-PET may be particularly helpful in early identification of dementing diseases. The utility of FDG-PET to distinguish Alzheimer’s disease (AD) and frontotemporal dementia (FTD) has been investigated sufficiently for its use in clinical care. In a study of autopsy confirmed cases, the addition of FDG-PET increased diagnostic accuracy and confidence for both AD and FTD and was particularly helpful when raters were uncertain in their clinical diagnosis (Foster et al., 2007). As a result, most insurers reimburse for this use of FDG-PET.

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Amyloid PET Brain Imaging Shows the Presence or Absence of AD Pathology in FTD

Pathological studies have confirmed that amyloid PET images fibrillar amyloid pathology in the brain (Clark et al., 2011). 18F-AV45 (Florbetapir, Amyvid, Avid/Lilly) is now available for clinical use. A decision about whether Medicare will reimburse Florbetapir scans is expected by July 2013. Other amyloid PET agents that appear promising including 18F-PIB (Flutemetamol, GE) and 18F-BAY94-9172 (AV-1, Florbetaben, Piramal). They show similar characteristics, but remain investigational at the time of this writing. All of these agents have a variable combination of non-specific white matter binding and plaque binding in the cerebral cortex which makes scan interpretation difficult. Consequently, these studies should only be ordered by dementia experts and interpreted by those who have been trained to read them. Studies with amyloid PET or neuropathological studies together with FDG-PET imaging together have shown that usually FTD has no Alzheimer pathology, but occasionally Alzheimer pathology can cause FTD. More research is obviously needed.

Proactive Care Empowers Patients and their Families, Improves Quality of Life, and Prevents Care Crises

At the University of Utah we have developed Proactive Dementia Care (PDC), a model of care that educates and empowers families with a progressive dementing disease. PDC brings together a broad portfolio of established evidence-based interventions, incorporating the principles of chronic care management. PDC emphasizes early treatment, and is interactive and flexible based upon individual needs and circumstances. PDC focuses on prevention rather than reacting to immediate problems. Typically families, health care providers and community agencies only react to needs after problems occur and fail to consider known preventative measures. They wait until burden or complications are obvious. This is an expensive, frustrating and often ineffective approach. By contrast, PDC takes full advantage of the window between diagnosis and when care crises and complications begin to arise. PDC is initiated immediately after diagnosis and is incorporated into our clinic visits so that it can use information derived from the evaluation to personalize guidance. In PDC, the physician completes an education prescription with risk assessment to communicate management goals that aim to prevent 1) legal and financial problems, 2) safety complications, 3) physical debility and falls, 4) mood disturbance and unwarrantedfunctional decline, 5) social isolation, and 6) care crises. We find that gauging level of risk is motivating. Tracking progress toward explicit treatment goals engages patients and families. PDC recognizes that dementia care presents unique challenges. Patients and families must acquire new information and skills in order to achieve family-assisted disease self-management. The process isn’t easy. They need a unified plan for progressive support to be prepared for changes in circumstances and symptom progression as disease advances. Continuing, consistent, expert, individualized advice is mandatory to make difficult, but necessary life-changing decisions and lifestyle modifications. We hope PDC will become more widely adopted over time and have developed auniversity spin-off company PAMS, Inc. to help families identify quality care and participate with health care professionals in supporting a family member with FTD or other memory concern.

Invest in Family Health History – Autopsy and Family-oriented Biobanking

Careful examination of the brains of individuals with FTD after death has made the most important advances in our knowledge possible. In addition, a neuropathological examination can provide important information to family members, particularly for the next generation. Every family should try to arrange to have an autopsy done in affected family members at the time of death. This can be done by talking to the local AFTD support group, contacting your personal physician for advice or contacting local hospital pathology departments. Remember, almost always autopsies need to be arranged in advance and may involve some costs. The outcome is worthwhile, however. Giving surviving family members information about the cause of the disease and contributing to knowledge allows something positive to come from death. At the University of Utah we have developed the Gift to Life outpatient autopsy planning program to provide families in the Intermountain West access to these critical services. Information is available through our website: http://uuhsc.utah.edu/cacir/.Unfortunately, in large parts of the country, these services aren’t available. In some areas where clinical autopsy services are unavailable, they may be provided through participation in research. Policies vary however whether information is released to family members.

Even when autopsy services can be arranged, we urge families to bank DNA. We offer this service to our families through PreventionGenetics. They can be contacted at www.preventiongenetics.com, 715-387-0484. With a

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nominal fee they extract and store DNA for a minimum of 20 years. This works just like a financial bank. Your family makes deposits, decides who can make withdrawals, and can know that when you need the information it will be there. For a modest charge the DNA in the bank can be sent directly to a research laboratory or a clinical laboratory for analysis. It is important to distinguish between family-oriented DNA biobanking and research biobanking. I encourage families to participate in research studies that involve banking of DNA, but you should be aware that with research biobanking you do not have control of the DNA and family members usually can’t access it if it becomes important to them in the future. Furthermore, you may never be told the results of any DNA testing.

References:

Clark CM, Schneider JA, Bedell BJ, et al. Use of florbetapir-PET for imaging beta-amyloid pathology. JAMA. 2011;305:275-83.

DeJesus-Hernandez M, Mackenzie IR, Boeve BF, et al. Expanded GGGGCC hexanucleotide repeat in noncoding region of C9ORF72 causes chromosome 9p-linked FTD and ALS. Neuron 2011;72:245-256.

Foster NL, Heidebrink JL, Clark CM, et al. FDG-PET improves accuracy in distinguishing frontotemporal dementia and Alzheimer’s disease. Brain. 2007;130:2616-35.

Gustafson L. Frontal lobe degeneration of non-Alzheimer type. II. Clinical picture and differential diagnosis. Archives of gerontology and geriatrics 1987;6:209-223.

Gorno-Tempini ML, Hillis AE, Weintraub S, et al. Classification of primary progressive aphasia and its variants. Neurology 2011;76:1006-1014.

Rascovsky K, Hodges JR, Knopman D, et al. Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain 2011;134:2456-2477.

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FTD Drug Trials Understanding and participating in emerging trials of potential disease-modifying treatments Susan L-J Dickinson, MSGC, Executive Director, AFTD Jill Shapira, Ph.D., RN, Nurse Practitioner, UCLA The goal of this session is to educate and empower our patients and families as they face increasing opportunities to participate in research that will lead to the first approved drugs for FTD. Research is not the same as medical treatment and there is no guarantee that an individual’s condition will improve. Participating in research studies contributes to scientific understanding of FTD and helps society through this increased knowledge. As we enter a promising new phase in FTD research there is good reason for much hope. But decades of drug development for other diseases demonstrates that the path to effective treatments will most likely be neither swift nor straight. Because FTD is a relatively rare disorder there will be a limited number of clinical sites involved in any one trial, meaning that a patient may have to travel to participate. The current lack of biomarkers means that we still do not know for sure what underlying disease process may be causing a person’s symptoms; this can greatly complicate design of a clinical trial. Finally, it is important to understand that, in order to have the best chance at producing definitive results, a trial will be designed to include patients who display a specific set of symptoms and characteristics—and exclude those who do not fit this profile. If you do not qualify for a trial based on these exclusion criteria it does not mean that you have done anything wrong, that your doctor cares any less about your care, nor that you should give up hope. You may well qualify for the next trial. You and your family are your own best advocate. Getting informed about a research study and asking any questions you have will help ensure that you can take on the role as a partner in the research study, rather than a subject.

Questions to Ask (from www.clinicaltrials.gov)

Anyone interested in participating in a clinical study should know as much as possible about the study and feel comfortable asking the research team questions about the study, the related procedures, and any expenses. The following questions might be helpful during such a discussion. Answers to some of these questions are provided in the informed consent document. Many of these questions are specific to clinical trials, but some also apply to observational studies.

• What is being studied?

• Why do researchers believe the intervention being tested might be effective? Why might it not be effective? Has it been tested before?

• What are the possible interventions that I might receive during the trial?

• How will it be determined which interventions I receive (for example, by chance)?

• Who will know which intervention I receive during the trial? Will I know? Will members of the research team know?

• How do the possible risks, side effects, and benefits of this trial compare with those of my current treatment?

• What will I have to do? What will my study partner have to do?

• What tests and procedures are involved?

• How often will I have to visit the hospital or clinic?

• Will hospitalization be required?

• How long will the study last?

• Who will pay for my participation?

• Will I be reimbursed for other expenses?

• What type of long-term follow-up care is part of this trial?

• If I benefit from the intervention, will I be allowed to continue receiving it after the trial ends?

• Will results of the study be provided to me?

• Who will oversee my medical care while I am in the trial?

• What are my options if I am injured during the study? Important Terms (http://www.clinicaltrials.gov/ct2/about-studies/glossary) Clinical Trial-- A clinical trial tests the safety and effectiveness of new medical approaches in humans. Clinical trials may also be called: clinical studies, medical research, or drug trials. There are five phases of clinical trials, as designated by the US FDA:

Phase 0: Exploratory study involving very limited human exposure to the drug, with no therapeutic or diagnostic goals. Phase 1: Studies that are usually conducted with healthy volunteers and that emphasize safety. The goal is to find out what the drug's most frequent and serious adverse events are and, often, how the drug is metabolized and excreted. Phase 2: Studies that gather preliminary data on effectiveness (whether the drug works in people who have a certain disease or condition). For example, participants receiving the drug may be compared with similar participants receiving a different treatment,

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usually an inactive substance (called a placebo) or a different drug. Safety continues to be evaluated, and short-term adverse events are studied. Phase 3: Studies that gather more information about safety and effectiveness by studying different populations and different dosages and by using the drug in combination with other drugs. Phase 4: Studies occurring after FDA has approved a drug for marketing. These studies gather additional information about a drug's safety, efficacy, or optimal use.

Disease-modifying treatment – A therapeutic intervention aimed at slowing or reversing the underlying disease process (e.g. lowering cholesterol or decreasing lung inflammation in asthma). At present there are no approved disease-modifying treatments for any of the FTD disorders. Inclusion criteria/ Exclusion criteria--The factors that allow someone to participate in a clinical study are called inclusion criteria, and the factors that disqualify someone from participating are called exclusion criteria. These are based on things such as age, gender, the type and stage of a disease, previous treatment history, and other medical conditions. If an individual does not qualify, it does not mean something is wrong with the person. There might be other studies that are more appropriate. Informed consent-- The goal of the informed consent process is to protect participants. All the important information about the study must be given to the potential participant in a written document that is clear and easy to understand and the participant must have the opportunity to ask questions. Generally, a person or his legal representative must sign an informed consent document to enroll in a study.

Interventional research—A research study in which participants receive a specific intervention, such as a drug or change in diet. The goal of an interventional study is to compare outcomes to that of a group that does not receive the intervention. Clinical trials are interventional studies. Observational research--An observational study tests hypotheses or measures certain outcomes using observational methods without any intervention or experimentation. Many FTD patients have participated in observational studies which are informing our understanding about the natural course of the disease. Orphan disease—An orphan, or rare, disease is defined as a disease or condition that affects less than 200,000 persons in the US (about 1 in every 1,500 people). In 1983 Congress passed the Orphan Drug Act, which provides incentives and accommodations (such as requiring a smaller number of participants) to encourage clinical trials in rare diseases. Outcome measures--A planned measurement described in the protocol that is used to determine the effect of interventions on participants in a clinical trial. For observational studies,

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a measurement or observation that is used to describe patterns of diseases or traits, or associations with exposures, risk factors, or treatment. Placebo—A substance that does not contain active ingredients and is made to be physically indistinguishable (that is, it looks and tastes identical) from the actual drug being studied. Protocol—The written description of a clinical study. It includes the study's objectives, design, and methods. It may also include relevant scientific background and statistical information. Symptomatic treatment—A therapeutic intervention with a goal of addressing the symptoms of the disease (e.g. decreasing agitation or promoting a good night’s sleep). For More Information

ClinicalTrials.gov provides both general information and includes a registry of clinical studies around the world.

MedlinePlus Clinical Trials Information is a web-based health information service of the National Library of Medicine (http://www.nlm.nih.gov/medlineplus/)

The Association for Frontotemporal Degeneration (www.theaftd.org/) supports funding for targeted FTD studies and disseminates information about current and prospective projects.

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AFTD Education Conference and Annual Meeting, Salt Lake City, 2013

Facing a New Diagnosis of FTD: Challenges and Opportunities

Kevin Duff, PhD, ABPP & Liz Garcia-Leavitt LCSW Center for Alzheimer’s Care, Imaging, & Research

Department of Neurology

FTD Subtypes

Behavioral variant

(Pick’s disease, Frontal variant)

Language variant

(Primary progressive

aphasia, Semantic dementia)

• FTD (frontotemporal degeneration) is an umbrella term for several clinical syndromes with a common pathology

• Symptoms affect cognition, behavior, and daily functioning • Each case presents with a unique set of overlapping symptoms which worsen

over time, becoming severe enough to impact all activities of daily living

Behavioral variant • Behavioral/personality changes

– Earliest symptoms; will worsen across time – Variable across individuals but can include apathy, inertia, & social

withdrawal, Socially inappropriate & impulsive/careless actions, compulsive behaviors

• Cognitive changes – Executive dysfunction (organizing, planning, sequencing, reasoning ) is

primary initial deficit – Language may remain intact at first, impact on Memory and other

cognitive domains tend to be variable • Daily functioning changes

– Limited social interactions and uncharacteristic behaviors (money, sex) which can significantly strain relationships

– Poorer eating habits, Poorer hygiene, Decreased awareness of difficulties

– Unable to work

Language variant • Behavioral/personality changes

– Less dramatic than behavioral variant – Primarily involves social withdrawal related to difficulty communicating – Depression and anxiety can also occur

• Cognitive changes – Language dysfunction is primary initial deficit

• Initially: Greater effort needed to produce speech, name objects, and write • Later: Very minimal output to mutism • Comprehension tends to remain intact for years

– Memory and other cognitive domains tend to be less affected • Daily functioning changes

– Limited social interactions – Limited community outings – Likely unable to work – May struggle with finances

Breakout: Facing a New Diagnosis

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Diagnostic Process • Awareness of symptoms

– Early, the patient reports more symptoms – Later, significant others report more

• Diagnosis starts with Primary Care Physician who often refers to a specialist (neurologist, geriatrician)

• Diagnosis based on a combination of – History, physical/neuro exam, bloodwork, … – Neuropsychological evaluation

• Interview & cognitive testing – Neuroimaging

• CT/MRI • FDG-PET

– Diagnosis & Treatment Planning • Acceptance, provide incentives for compliance, talk about “behaviors”

not “problems”

Cognitive & Behavioral Difficulties in FTD …and things you can do about them

• Executive functioning – Difficulties with planning, sequencing, inhibition,

organizing – Be concrete, be clear, be detailed, structure and

routine are helpful, prepare for changes • Working memory

– Initially, its difficult to “multi-task”, but later, the individual cannot focus on more than one thing at a time

– Keep things simple, write things down, don’t rely on “doing it in your head”, minimize distractions


• Psychomotor speed – Slowed, but generally accurate. As disease

progresses, speed decreases further and accuracy can decline too

– Allow extra time, minimize speed to maximize accuracy, used closed-end questions, keep conversations focused

• Learning and memory – Learning and delayed recall appear impaired, however,

recognition memory is relatively intact – Use mnemonic strategies, write lists, dry erase

calendars, pre-organize information, limit information to what is necessary


• Depression – Low mood, decreased interest, fatigue, poor sleep, no

appetite. Can be “reactive” and “endogenous” and lead to poorer outcomes for patient and caregiver

– Increase pleasurable activities, reframing • Apathy

– Decreased involvement, without low mood, often related to starting/initiating actions

– Schedules and routines, gentle nudging, enlist others’ help

• Obsessions & compulsions – Repetitive and perseverative (“stuck”) – Distractions, reassurance, set limits, acceptance

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Treatment Options

• Consult primary care provider, neurologist, or other healthcare provider first

• No FDA-approved treatments are available

• Very few studies have focused on FTD and the few that have used very small samples so generalizability of results is unclear – BUT some options may be considered to

manage cognitive and behavioral symptoms

Cognitive Treatment Options • Acetylcholinesterase inhibitors (Donepezil,

Rivastigmine) have had mixed results, with some showing worse outcomes

• Speech therapy can improve communication skills

• Occupational therapy can improve some fine motor skills

• Cognitive rehabilitation can teach skills to improve memory, language, and problem solving

Behavioral Treatment Options • Depression/apathy/compulsions

– Selective serotonin reuptake inhibitors have shown some efficacy

• Aggression/irritability/psychosis – Atypical antipsychotics have shown some benefit

• Non-pharmacological options include – Individual psychotherapy – Group therapy/support groups – Reinforcing “desired” behaviors, ignoring “undesired”

behaviors – Lifestyle changes (e.g., adequate sleep, nutrition,

exercise) – Keep expectations realistic

Before and after diagnosis: A shift in worldview

• Before Diagnosis – Symptoms causing havoc in the family system – Lengthy diagnostic process frequently extended by challenge of finding

appropriate medical care. – Disruption in family life and career plans. – Changing roles within the Family

• After Diagnosis – Pre-Diagnosis symptoms seen in new light once a Neurological basis

for behaviors is recognized – Every Brain is different

• Don’t worry about symptoms you are not seeing

– Our loved one with FTD cannot adapt/change, but we can.

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Taking Stock • Discuss the disease and implications with Family

and Friends. Things to consider include: – Transparency VS Privacy and the Value of Openness – Safety issues – Support for Caregivers

• Assessing Current Needs and Resources – Who are the Caregivers? – Who can be Helpers/Allies? – What are the safety concerns? – Are the financial resources protected?

• What needs to change now? – Finding your new normal

• You can do this, just not all by yourself - Know your own strengths and limits

This is a Marathon not a Sprint and the course will change so have a Plan A, Plan B, Plan C....

Planning for the Future • Assemble a care team

– Family members cannot put their lives on hold for the long term (without consequences).

– Volunteers and church groups are unlikely to be able to fill the needs long term.

• What are the Family Priorities and goals? – Legal Planning and decision making

• Contact an Elder Law attorney to assist in financial planning and securing assets for the future

– Execute Advanced Directives and Power of Attorney for Financial decisions and Medical care

• Medical/legal professionals can help assess ability to legally sign documents

• Be very careful choosing who to assign to make decisions.

• If the situation is contentious or complicated Guardianship or Conservatorship may be a necessary last resort.

Resources: What benefits can I access? • State/Federal Programs and other benefits

– Social Security Disability/SSI • ALL forms of FTD qualify for expedited application thru Compassionate

Allowances program – Long Term Care insurance – Veteran's Benefits – County aging services /AAA (Over 62)

• AFTD and Alzheimer’s Association – Helpline and Care consultation – Respite Grants – Connections to other caregivers

• Local services and programs – FTD Caregiver Support Groups – Family Caregiver programs – Care management services – Local medical services – Non-medical in home providers – Adult day programing

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Breakout: Managing At Home


Psychosocial Dementia Care

Multidisciplinary Care Model

Frontotemporal Lobar Degeneration Troy Andersen MSW,MS, LCSW

Dementia Specialist Social Worker Center for Alzheimer’s Care, Imaging &

Research University of Utah

Psychosocial Dementia Care

Frontotemporal Dementia (FTD)

• Insidious onset of progressive dementia • Disturbing behavior and speech problems most

prominent, less evident memory loss • Perseveration, decreased verbal fluency • Typical behavioral changes including apathy,

unrestrained and inappropriate social conduct • Memory loss often not prominent; AD screening tests

may be insensitive • May be associated with motor neuron disease • 2nd most common dementing disease if age <65

Unique Dementia Caregiving Issues

• Dementia care is uniquely different from other forms of caregiving – Functional & role changes

– Personality & relationship changes

– Supervision needs

– Risk reductions

– Financial & living situation preparation

– Support network planning

Patient Centered Care

• Significant functional changes occur between the mid-mild stage and the mid-moderate stage of dementia

• Benefits of early intervention to enhance patient-centered care: – Increased ability to engage in decision making

Advanced health care directives Durable power of attorney Living transitions Transitions of care

– Increased opportunity to make meaningful lifestyle changes Changes in physical activity Increase in intellectually stimulating activities Increase in social interactions

– Opportunities to prevent expected risks

Risk of Care Crises

• Disease specific & individualize knowledge • Planning for the unexpected

– Short-term plan – Permanent plan

• Proactive use of respite – Family rotations – Adult day services – Weekend respite trips

• Disease spanning living transition plans

Legal and Financial Risks • Understanding & developing a financial plan for

care – Medicare & Medicaid – LTC insurance – Hospice

• Maximal use of services at each care level – Home health is less expensive than facility care

• Completion of appropriate legal documents – Advanced health care directive – Durable power of attorney for finances

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Risk of Mood and Excess Decline

• Treatment of mood related issues (depression) is important

• Engage in intellectually stimulating activities – Varied & novel & daily – Combine with social, board games

• Maintain engagement in recreational activities & travel

• Achieve functional potential

Risk of Physical Debility

• Exercise plan of 30 minutes a day – Summer & winter plans

• Assess/prevent fall risks – Walking

– Stairs

– Bathroom

• Adequate nutritional & fluid intake – Hydration is important

Safety Risk

• Driving – OT driving evaluations – Alternative transportation plans

• Safe Return program (Alzheimer’s Association) • Home safety planning

– Occupational Therapy referrals – Other safety tips (stove top)

• Firearms & power tools • Wandering

– House alarms

Risk of Social Isolation

• Expanding the social support network – Identify all potential care providers at first visit – All care providers should be adequately educated

• Encourage adequate socialization – Couples often do not actively communicate

• Assure supervision needs are adequate – Planning for 24/7 care

• Encourage use of senior centers with a partner • Maintain the caregiver’s social engagements

Summary of PDC

• Disease education & care planning should begin at point of diagnosis

• Proactive plans should be in place before need arises

• Understanding of functional & care changes across the disease span are understood & anticipated

• Individuals with dementia are able to engage in lifestyle changes & care decisions if initiated early

Questions??

• Contact information: –[email protected] –Utahmemory.org

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Validation Therapy Available Services Resources

Sylvia Brunihsolz, LCSW, CMC Family Services counselor, Alzheimer’s Association

WHAT IS VALIDATION THERAPY? • Validation therapy “validates” or accepts the values,

beliefs and “reality” of people suffering from dementia. The key is to “agree” but use conversation to redirect them to do something else without them realizing it.

• Naomi Feil, a social worker, designed validation therapy to help dementia sufferers. It relies on the patient's emotions. Feil reported in her book "The Validation Breakthrough" that after six months of using validation therapy once a week, persons with dementia showed improvement in eye contact, walking and behavior. Her theories explain why people with dementia behave the way they do.

WHO BENEFITS FROM VALIDATION THERAPY?

• Patients with mild to severe dementia. • Dementia is a decline in intellectual functioning and/or

memory severe enough to interfere with social or occupational functioning. Dementia is not a disease itself, but group of symptoms. It is characterized as a progressive decline in cognitive function due to damage or disease in the brain. Areas particularly affected include: memory, attention, judgment, language and problem solving.

• Dementia is a condition in which a person loses the ability to reason, remember, make decisions and solve problems. Symptoms may also include personality changes and emotional problems. Personality does not change with age in the absence of mental disease. There are multiple types of dementia.

POSITIVES AND NEGATIVES?

• Positives (Pros) • Non-confrontational • May reduce agitation, anxiety, anger, fear, and sadness

when an individual is “met where they are at…” • Help maintain a quality of life • May allow individuals to remain in lower levels of care

for longer periods of time

• Negatives (Criticisms) • Critics of validation therapy have purported that it

promotes “misrepresentations” to individuals.

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PRINCIPLES OF VALIDATION THERAPY 1. All people are unique and must be treated as individuals. 2. All people are valuable, no matter how disoriented they are. 3. There is a reason behind the behavior of disoriented individuals. 4. Behavior in dementia is not merely a function of anatomic changes in the brain, but reflects a combination of past and present, physical, social and psychological experiences. 5. Individuals with dementia cannot be forced to change their behaviors. Behaviors can be changed only if the person wants to change them. 6. People must be accepted nonjudgmentally. 7. Particular life tasks are associated with each stage of life. Failure to complete a task at the appropriate stage of life may lead to psychological problems. 8. Painful feelings that are expressed, acknowledged, and Validated by a trusted listener will diminish. Painful feelings that are ignored or suppressed will gain strength. 9. Empathy builds trust, reduces anxiety, and restores dignity.

PRINCIPLES SUMMARIZED

• The basic principle of the therapy is the concept of Validation or the reciprocated communication of respect which communicates that the other's opinions are acknowledged, respected, heard, and (regardless whether or not the listener actually agrees with the content), they are being treated with genuine respect as a legitimate expression of their feelings, rather than marginalized or dismissed.

TECHNIQUES OF VALIDATION

• The techniques of Validation are simple to

learn and can be performed within the course of a typical day. By using these techniques, caregivers can improve the lives not only of the people for whom they care, but for themselves as well. Different Validation techniques are appropriate for different stages of Resolution.

TECHNIQUES OF VALIDATION • 1. Centering • 2. Using Nonthreatening, Factual Words to Build Trust • 3. Rephrasing • 4. Using Polarity • 5. Imagining the Opposite • 6. Reminiscing • 7. Maintaining Genuine, Close Eye Contact • 8. Using Ambiguity • 9. Using a Clear, Low, Loving Tone of Voice • 10. Observing and Matching the Person’s Motion and Emotions (Mirroring) • 11. Linking the Behavior with the Unmet Human Needs • 12. Identifying and Using the Preferred Sense • 13. Touching • 14. Using Music • 15. Empathy

Breakout: Partnering with a Facility


Facility Care: Things to Look for When Considering Placement Allie Diamond, MSW, CSW, Randi Garvin, MSW, CSW and Sandi Grow, RN

1. Location: Facilities near busy streets or intersections may pose as a danger to individuals with FTD who may get out of the building and wander away.

2. Management of Behaviors: Redirection techniques and engaging individuals with FTD should be the first approach when it comes to behaviors; and only after these things don't work should staff resort to medication. When assessing for management of behaviors give specific scenarios to staff members and ask them how they would handle the behavior. Look for an understanding of staff with regards to behaviors that are common in individuals with FTD.

3. Engagements/Activities: Many people with FTD prefer individual activities. Have the staff give examples of how they accommodate this.

4. Indoor and Outdoor Walking Spaces: Pay attention as you are touring a facility to the walking paths and areas. Often times individuals with FTD like to walk; the more areas available for them to walk the better.

5. Nutrition Options including Finger Foods: It is important that staff offer nutritious finger foods because people with FTD often have difficulty sitting down to eat a whole meal. Also, inquire about specific diet options if needed.

6. Medication Management: Many physicians and facilities are unfamiliar with FTD. Careful coordination around medications is especially important. The goal should be the least amount of medications with the highest level of functioning.

7. Staff Knowledge of Dementia (FTD) in particular: Is staff trained on the different types of dementia including FTD? Encourage family to gauge commitment to continued learning vs. something checked off as done.

8. Therapy/Restorative/Exercise Programs: What programs are available to keep residents physically active? Look for facilities who offer therapy or restorative programs when a resident starts to have a decline. These programs aim to keep residents as physically and functionally independent as possible for as long as possible.

9. Staffing Ratio: What is the resident to staff ratio? Does this change during different shifts? People with FTD do better in smaller facilities or units with more staff available.

10. Staffing Patterns: Do the same caregivers and nurse work with the same residents on a daily basis? Or, does the resident have a different caregiver daily? The ability to develop consistent routine with staff is helpful in FTD. Shared shifts can be important for staff quality/morale when behavior issues require particular 1:1 time.

11. Support Services for Family: Attending support groups and receiving support from others who are going through a similar experience is helpful for caregivers of individuals with FTD. Especially, when these groups are available at the facility it builds a sense of understanding with family members of other residents.

12. Cost/Medicaid/Medicaid Waiver Programs/Private Pay/Long Term Care Insurance: It is importance to have an understanding of your finances as you look at long term placement. FTD tends to be diagnosed

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in individuals at a young age and care is often expensive and may deplete resources quickly. It is very important to plan for both the best and worst case scenarios so you don't find yourself scrambling when changes take place.

13. Pets: Animals can help individuals with FTD express love and caring without having to communicate verbally. Also, being able to walk a dog, for example, can be a great activity to keep FTD individuals active and give them a sense of purpose.

14. Volunteer Program: People with FTD may need more individual attention in care that volunteers can help to provide. Also, volunteers can be a great support to care staff in relieving their load especially when the FTD individual has difficult behaviors.

15. RN on Staff: Having an RN on staff can be very helpful in managing the medical oversight. Especially, with an individual with FTD a nurse can be trained to notice specific changes in behaviors and can talk to the doctor about performing labs or tests to see what may be taking place with the resident.

16. Memory Boxes: These are often very helpful for residents with memory impairment because they usually contain items and photos that are important to the resident. These also serve as a great redirection tool for staff members.

17. Care Conference Meetings: It is very important as a caregiver or family member to be a part of the care team because your insight is priceless to staff and their being successful in caring for the person with FTD. As much as possible, be a part of the care conference meetings.

18. Cost: Depending on the facility costs will be all inclusive or more of an a la carte style, meaning there is a base rate that is offered, but the cost goes up with the more assistance or care an individual needs. This is important to be aware of so you don't find yourself paying more money than you anticipated.

19. Available Accommodations: Are respite care, day stays and other accommodations available? Especially, early on when you are looking at transitioning an FTD individual into a facility, utilizing respite care and day stays can give you a good picture of whether or not the facility is a good fit.

20. Transition Planning: People with FTD most often have several transitions in care (AL, NH) understand how the facility approaches planning for a transition, how they involve family and coordinate with other providers.

21. Use of In-Patient Care: Ask about and understand how the facility approaches coordination with family and hospital in event in-patient care is needed.

22. Low Stimulation Environment: People with FTD do best in an environment that is not overly stimulating in terms of noise, lights and activity. It is important to have different common areas in addition to a person’s room that can provide quiet.

23. Routine: People with FTD do well with a routine but may not be able to follow established structure of group activities. Ask how staff would develop and implement an individual routine as needed.

Check out the following online resources for more information and checklists on how to compare different facilities. • http://www.centralmidlands.org/pdf/long-term-manual.pdf • http://www.theaftd.org/wp-content/uploads/2009/03/Facilitycare-Isfacilitycarebestchoice-4-101.pdf • http://www.theaftd.org/wp-content/uploads/2009/03/Facilitycare-WhatToLookFor-4-101.pdf

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Facility Care: Daily Care Snapshot

Adapted from AFTD’s Partners in FTD Care Daily Care Snapshot

For more information and access to the original document go to: www.theaftd.org Your input to transitioning your loved one into a health care community is very valuable. The Daily Care Snapshot will assist staff by building on your knowledge and experience. The more information you provide, the better others can get to know your loved one’s needs and preferences. Thank you.

I. Give a brief introduction of the person you have care for Life accomplishments, key relationships with family/friends, and what your role as a caregiver has been and will be.

II. Describe regular activities, hobbies, and current abilities Include the level of assistance needed for each activity. For example, he/she can complete activities independently; needs help getting started; or requires monitoring. Add additional strengths.

III. Describe any concerns or needs in the following areas (Self-Care, Interpersonal, and Safety) and the helpful steps taken in the past. Include specific examples of behaviors, such as refusing to shower; grinding teeth; or at risk of choking. For helpful interventions, include medical/community resources, i.e. psychiatry, religious affiliation, therapy, as well as successful behavioral/communication approaches.

i. Self Care (examples include: dressing, eating, walking, personal hygiene and toileting)

ii. Interpersonal (examples include: repetitive habits, fixed stare, one-word responses, incorrect use of the words “yes” and “no”, sleep disturbance, and becoming overwhelmed easily)

iii. Safety (examples include wandering, falls, puts too much food into mouth without swallowing, and eating non-food items)

IV. Other comments or experiences to share

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Facility Care: Thoughts from One Caregiver’s Experience Sandi Grow, Member of the AFTD Committee on LTC Staff Education

Introduction:My husband was diagnosed with FTD at the age of 54 in 2007. With the loss of his job and the inability to plan his day he started to wander. It quickly became apparent that Karl was not safe home alone; I needed to keep my job and health care coverage. To provide structure to his day and give him purpose he “volunteered” at a day center. In 2009 as his disease progressed, the care needs were changing so I investigated assisted living and LTC options. Initially Karl did well in assisted living and then progressed to needing amore skilled environment by March of 2010.

Choosing a Care Facility:Use local resources like the Alzheimer’s Association, contact AFTD to see if they have suggestions for your area, and ask other friends in the community for their recommendations. Visit facilities and discuss the needs of your loved one. Take a friend or family member with you so you always have an extra set of eyes and ears. In our case, I was looking for a secure environment that still had room to roam. This sometimes narrows the choices.

May I Interject My Opinion? PLAN BEven if your goal is to keep your loved one at home with caregivers – ALWAYS think about a plan “B”. Review your financial options with a professional such as an Elder Care Attorney. FTD can be a long process with changes for you and your loved one. Look at a facility that you could use in the event you need to change the initial plan due to an unexpected illness or need for respite. There may be an out of town family gathering or the need for a vacation. Should the need arise you should feel that you have chosen an option you are comfortable with.

Getting Acquainted:1. The facility and others in a support group can help you with suggestions on how introduce your loved one to a new care situation.2. Not everyone has heard of FTD, some of the behaviors may be different, offer references and fact sheets about the disease.

AFTD has developed a training packet for facilities called Partners In Care.3. Just as important is the need for you to let the staff know as much as you can about the person you have been caring for – what

are their interests, likes and dislikes and activities you have found work out best. The Daily Care Snap Shot Tool that can be found on the web site or in the packet is for families to assist with placement assessment.

4. They say a picture is worth a thousand words. There are many sites available to create a photo book or photo collage to tell about the person. I know the staff has commented on this book several times. If you are not tech savvy look to younger family and friends asking them to help. If someone is good at creating video, a video of photos and movie clips is another option.

Partnering in Care:There are now many people on your team: caregivers, activity staff, physical therapists, speech therapy, occupational therapist, social workers, your physician YOU and your family. It takes a whole “town” to help deal with illnesses when someone is cognitively impaired.Get acquainted with the team and use their experience. Present any concerns and work on the plan of care. Be involved in activity suggestions. AFTD has developed a forum for facilities to post questions and get suggestions from others, encourage your facility to participate with problems and successes.

Problem Solving:As the disease progresses so can behaviors and care needs. Sometimes you need to be a detective to help solve problems. Use the whole team and go to other sources as needed. Karl developed hyper oral behaviors of chewing on his shirts, straws, napkins and other non-food items. To help solve this we had to get the advice of a dentist, speech therapy and his neurologist. In the end we used “chew Stixx” – an option that is used with some autistic and special needs children. Borrowing from disciplines outside the usual may be the best solution. Due to pacing Karl developed blisters on his feet, trying to stop pacing can create other behaviors. Discussion with a podiatrist suggested having his foot measured for size. We visited a local store that often helps diabetics choose the best shoe option. Karl did need a larger wider shoe but had been unable to verbalize and possibly unaware of the problem. New size shoes –problem solved.

Care for YourselfDon’t forget the need for your own health check-ups, dental appointments and time with friends.

Best to you on this journey!.

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Breakout: Hospice and Late Stage Care

Shar Sweeney – Director of Support Services Inspiration Hospice and Home Health

Salt Lake ▪ Provo/Orem ▪ Ogden 1.800.593.1317

835 East 4800 South Suite 110 Murray UT, 84107

HOSPICE ELIGIBILITY CRITERIA Dementia

Unable to walk, bathe, or dress without assistance

Incontinence of bowel and bladder – intermittent or constant

Speaks 6 or fewer words per day – non-meaningful verbal communication

…. And also one of the following conditions within the past twelve months:

Aspiration pneumonia

Upper urinary tract infection or pyelonephritis

Septicemia

Decubitus ulcers

Fever, recurrent after antibiotics

Impaired nutritional status (as demonstrated by a 10% weight loss over 6 months or a serum albumin less than 2.5 gm/dl)

In the absence of one or more of these findings, rapid decline or another condition (co-morbidity) may support eligibility for hospice care.

Decline in Health Rapid decline over the past 3-6 months with:

Dependence on assistance for 2 or more ADLs, (bathing, dressing, continence, transfer, walking, feeding)

Weight loss and/or declining serum albumin levels

Decline in functional performance

Progression of disease evidenced by symptoms / signs / test results

Increasing visits to physician / ER / hospital

Multiple comorbidities

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HOSPICE MYTHS AND REALITIES

Shar Sweeney, Inspiration Hospice and Home Health

Myth: Hospice means that the patient will soon die. Reality: Receiving hospice care does not mean giving up hope or that death is imminent. The earlier an individual receives hospice care, the more opportunity there is to stabilize a patient's medical condition and address other needs. Myth: Patients can only receive hospice care for a limited amount of time. Reality: The Medicare benefit, and most private insurance, pays for hospice care as long as the patient continues to meets the criteria necessary. Patients may come on and off hospice care, and re-enroll in hospice care, as needed. Myth: All hospice programs are the same. Reality: All licensed hospice programs must provide certain services, but the range of support services and programs may differ. In addition, hospice programs and operating styles may vary from state to state depending on state laws and regulations. Like other medical care providers, business models differ. Myth: Hospice is just for the patient. Reality: Hospice focuses on comfort, dignity, and emotional support. The quality of life for the patient, and also family members and others who are caregivers, is the highest priority. Myth: Once a patient elects hospice, he or she can no longer receive care from the primary care physician. Reality: Hospice reinforces the patient-primary physician relationship by advocating either office or home visits, according to the physician preference. Hospices work closely with the primary physician and consider the continuation of the patient-physician relationship to be of the highest priority. Myth: Once a patient elects hospice care, he or she cannot return to traditional medical treatment. Reality: Patients always have the right to reinstate traditional care at any time, for any reason. If a patient's condition improves or the disease goes into remission, he or she can be discharged from a hospice and return to aggressive, curative measures, if so desired. Myth: Hospice means giving up hope. Reality: When faced with a terminal illness, many patients and family members tend to dwell on the imminent loss of life rather than on making the most of the life that remains. Hospice helps patients reclaim the spirit of life. It helps them understand that even though death can lead to sadness, anger, and pain, it can also lead to opportunities for reminiscence, laughter, reunion, and hope.

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Advance Care Planning Discussions

Kathie Supiano, PhD, LCSW

As the family member—assess your understanding of the situation, acceptance of the situation, ability to obtain knowledge, plan, problem solve, cooperate with the health care team and accept support and guidance from both formal and informal sources. The purpose of advance care planning conversations is to take knowledge of diagnosis and prognosis and, with the patient—to develop goals of care in accordance with the patient’s needs and wishes—in anticipation of the diminished capacity of the patient to express wishes and direct care as disease progresses. Set the stage for the conversation: Select calmest location, the time of least fatigue/agitation. Set aside other topics. Minimize distractions (TV, phones). Determine who should be present—the two of you, family/friends, the medical team. The scope of discussion What matters to you as the illness progresses, as the end of your life nears? Who do you want involved with your care? Where would you like to be? Do you have milestones or activities we should plan for now? Are there relationships to attend to? Are there affairs to get in order? Under what circumstances would you want your care to move from curative to comfort only? Are there circumstances of living that you feel would be worse than death? http://theconversationproject.org

Who should be named surrogate (proxy) decision maker? This person’s role is activated when the patient no longer has decisional capacity. The patient designates this person in advance—otherwise, legal status takes precedent.

The principle of substituted judgment: The decision the patient would render, if able to do so, with full understanding of medical condition, prognosis and treatment options. This is not—what the doctor would recommend if it were “his own mother”, what the family wants or needs (“selfish love”), or what is financially expeditious, unless that reflects the patient’s intention.

Arrange to complete Advance Directives, Health Care Proxy & Physician’s Order for Life-sustaining Treatment (POLST) forms [terms vary in each State].

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PREPARING FOR LOSS-ANTICIPATORY GRIEF Kathie Supiano, PhD, LCSW

Anticipatory grief-The normal grief reaction that occurs in expectation of the death of a close other; it is frequently similar to the grief that follows death, and includes sadness, loneliness and role adjustments. One must grieve what is, what will not be, and what was— The patient becomes less participatory as disease progresses and death nears. Being strong and withholding feelings to protect the patient diminishes the relationship. It is not uncourageous or unsupportive to express yourself to the patient and to supportive others. Spend time together—spend time apart. Do not forget the needs of others—especially children—balance their needs with yours. Practice relentless self-care. You know about good nutrition, exercise and sleep. Remember—fellowship, spiritual care, music, frivolity & laughter. Practice forgiveness. When death nears—consider granting the patient permission to die. “You can shed tears that she is gone, or you can smile because she has lived. You can close your eyes and pray that she'll come back, or you can open your eyes and see all she's left. Your heart can be empty because you can't see her, or you can be full of the love you shared. You can turn your back on tomorrow and live yesterday, or you can be happy for tomorrow because of yesterday. You can remember her only that she is gone, or you can cherish her memory and let it live on. You can cry and close your mind, be empty and turn your back. Or you can do what she'd want: smile, open your eyes, love and go on.” David Harkins

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Breakout: For People with FTD


“What about Me?” Support for People with FTD

Sharon Denny, MA, Howard Glick and Jill Shapira, PhD, RN

Having FTD does not change what you enjoy and value in life. It can change how want to live. While you may feel alone as you face this diagnosis, there are people and resources that can help.

• Learn about your diagnosis and gather articles, website addresses and other resources to help

you teach others.

• Find family, friends and professionals you trust who will learn about FTD and help as your needs change.

• Plan ahead. Formalize your wishes about who you will want to help you with legal and medical

decision making (power of attorney, advance health care directives).

• Continue to do things you like. You can do the same things, but may have to do them

differently to work around symptoms. Keep it simple.

• Be practical. Plan for help with medical appointments, meals and household tasks, finances and

paperwork, transportation and companionship.

• Find support. You may want to share your experiences with others who have been diagnosed

with FTD. Some people use online support. A few caregiver groups and medical centers have programs for people with FTD.

• Try an early-stage memory loss group. Local communities may have programs for people with

young-onset or early-stage Alzheimer’s disease. These education and support groups can be helpful for some people with FTD.

• Express yourself. Your experience of the disease is unique. Find ways to share thoughts, feelings

and concerns through talking with people close to you, or through creative arts, hobbies or activities. Some people write blogs about their experiences.

• Pick your battles. Not everyone will understand. Some people you think you can count on will disappoint you. Invest energy in those who listen and try to help.

• Tell us what you need. People with FTD who are interested in support should let family, local

providers and AFTD know in order to advocate for the development of more opportunities.

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HOWARD GLICK’S SURVIVAL KIT FOR PEOPLE WITH FTD

Awareness cards

Medic alert bracelet or chain

AFTD website and HelpLine for information and questions

Register – www.theaftd.org Helpline – 866-507-7222 or [email protected] It Is What It Is – film to promote awareness

Develop a routine – It’s important to have a daily routine when you aren’t working, a reason to get up and get going. Include household activities, personal care, walking or exercise, time with others, activities you care about.

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Meditation or relaxation strategy – Having FTD is stressful. Develop a habit to keep the stress to a minimum.

Mantra for travelling – “Not a F %&$ ing Word.” Find a phrase to repeat to yourself to hold back impulsive comments that may cause trouble when travelling or out in public.

Find support - We all need to know other people who understand this.

The FTD/Dementia Support Blog http://earlydementiasupport.blogspot.com/

FTD Patient Support Group on Facebook Facilitated by Howard contact him for more info [email protected]

The FTD Support Forum http://ftdsupportforum.com

***NEW*** AFTD Telephone Support Group for People with FTD Contact [email protected] or 866-507-7222 for more information

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AFTD Resources

***NEW! A Guide for Managing a New Diagnosis“The Doctor Thinks It’s FTD. Now What?” is a publication from AFTD that helps individuals and families take a strategic approach to a diagnosis of FTD and prepare for the changes it brings.

AFTD Website - www.theaftd.orgThe place for information, resources or support related to FTD. The Healthcare Professional section now includes new material on clinical criteria, diagnosis and treatment.

AFTD HelpLine - 866.507.7222 toll-free or [email protected]’s most important direct service to patients, caregivers and professionals. The HelpLine is staffed Monday - Friday during office hours.

Caregiver Respite GrantsThe Comstock Caregiver Respite Program encourages family caregivers to reenergize through the use of respite services. The program provides $500 grants to eligible caregivers.

Connect with SupportAFTD connects caregivers and people with FTD with support that fits their needs. Visit the website for a listing of local FTD groups by region. AFTD provides telephone support groups and individual connections for when no local group is available.

It Is What It Is (DVD)A powerful short documentary that features four families as they confront FTD. The DVD introduces people to the disease and its impact. It comes with a 12-page educational booklet. Excellent for raising awareness and helping professionals understand the needs of people with FTD and their families.

The GatewayThe Gateway is AFTD’s bimonthly electronic newsletter for caregivers. Each issue provides information about what’s happening at AFTD, encouragement for caregivers and research updates.

** Visit AFTD’s website (www.theaftd.org) for more information on these and the growing array of resources available for people with FTD, families and professionals. **

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www.theaftd.org 267.514.7221 / 866.507.7222

©2013 AFTD

Education Opportunities for Community Health Providers

Frontotemporal degeneration (FTD) is a disease process that causes changes in behavior and personality, language and/or motor skills. It accounts for 10-20% of all dementias and is nearly as common as Alzheimer’s disease in people under 65. The symptoms of FTD are devastating and differ significantly from more common forms of dementia. While families need assistance from community providers such as home health, day program and facility care, many programs do not feel ready to respond. Educational materials for you and your staff Visit Partners in FTD Care on AFTD’s website for a description of the initiative and available materials. Training materials include: AFTD’s powerful film, It Is What It Is – introduces FTD and the challenges that patients and

families face. DVD comes with 12 page information booklet, and NEW discussion questions to use with staff and leader’s version for trainers.

Three clinical case studies – developed by experts to highlight different presentations of FTD and interventions; includes discussion questions for participants and leader’s version.

Changes in Behavior chart– developed by the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern University

Daily Care Snapshot Tool – for families to assist with placement assessment Resources List – valuable places to turn for additional information Order: Online via www.theaftd.org or send $20 for US delivery /$30 International (includes postage and handling) to: Partners in FTD Care, AFTD Radnor Station Building 2, Suite 320

290 King of Prussia Rd. Radnor, PA 19087

Sign up for on-going training resources Register at www.theaftd.org or email [email protected] to receive quarterly electronic education bulletins written by veteran nurse practitioners. Great for building knowledge and confidence to serve people with FTD. Register to participate in a members-only interactive online forum for professionals to ask questions, hear from experts and share your successes.

Partners in FTD Care is an education initiative of the Association for Frontotemporal Degeneration that brings together

health professionals, experts and families to promote understanding of FTD and to develop best practices in community care.

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theaftd- team

The AFTD-Team is comprised of every grassroots fundraiser, organizer and participant who steps up to raise awareness and funds for AFTD. Fundraisers may be spread from Connecticut to California, but they are all driven by a common goal of funding research, care, treatment

and ultimately a cure. In addition, The AFTD-Team stands behind this declaration: Yeah…I’m here to Fight This Disease.

AFTD has lots of tools to support your efforts, including a 12-page fundraising toolkit and an online fundraising site where you can share

your story and raise awareness and donations via email.

For those who don’t have the time to organize and host their own fundraiser, AFTD recommends forming a team to participate in an existing walk or run. Visit the website www.runningintheusa.com to

find local events that you can participate in to raise money for AFTD.

Raise $250 and get a shirt that tells the world you’re a proud member of The AFTD-Team!

If you’d like to raise money to Fight This Disease, please contact Angie Maher at [email protected] or 267.514.7221 x2530.

JOIN

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September 29 - October 6, 2013

The first week of October, AFTD will launch its first-ever annual “Food for Thought” initiative. Food for Thought is a grassroots fundraising and awareness-raising

campaign designed to rally as many supporters of AFTD as possible during the first week of October across the country and Canada. Our collective effort to raise

awareness will hopefully draw the media’s attention and garner some great press about FTD.

This campaign seeks to make a few more people aware of FTD while involving some food/drink and a little education. Event hosts can have a dinner in their home for

friends and family, hold a bake/cider sale or engage a local restaurant to have a “Food for Thought” night out at their establishment. More details about each of these options can

be found in the Food for Thought toolkit on AFTD’s website.

So…let’s get as many people across the country and Canada to gather together and raise awareness! Simply fill out the Food for Thought Event Form on AFTD’s website, and we’ll get an AFTD Food for Thought Volunteer Liaison in touch with you.

Together, we’re a recipe for success!

AFTD’sFoodforThought

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IT’S TIME TO TAKE ACTION AND VOLUNTEER!

Has frontotemporal degeneration (FTD) affected your life?

You can get involved today by joining a national network of volunteers making a positive impact in the world of FTD. The Association for Frontotemporal Degeneration (AFTD) needs the time and talents of volunteers everywhere to help bring FTD to the forefront.

Opportunities vary from leadership roles and residential facility outreach to hosting fundraisers. We will explore projects together that best suit your skills and preferences. You will be provided with guidance and support to ensure that you have a satisfying and rewarding experience that will meet your individual goals.

Are you ready to take action?

Regional Coordinator Volunteers

TO LEARN MORE:

http://www.theaftd.org/about/volunteer or

Contact Kerri Barthel Volunteer Manager

267-514-7221 / [email protected]

Do you want to help make a difference for families facing FTD

now, and in the future?

Notes:

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Notes:

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The Quest Continues

TauRx Therapeutics®

Therapies and Diagnostics for Neurodegenerative Disease

TauRx: Dedicated to halting the progression of Alzheimer’s and Frontotemporal Dementia.

Clinical research is an important step in the development of new medicines for unmet clinical needs. In frontotemporal dementia (FTD), TauRx is currently conducting a Phase 3 clinical study to evaluate the safety and efficacy of its proprietary Tau Aggregation Inhibitor, LMTX™, in patients with behavioral variant FTD (bvFTD). This study is currently recruiting andpatients and caregivers are invited to complete a short survey to indicate their interest in receiving study updates as further information becomes available. Please visit:www.DementiaStudies.info

Building on a century of pioneering Tau Research

1907: Dr. Alois Alzheimer presents discovery of neurofibrillary tangles in a patient.

1968: Sir Martin Roth correlates the formation of tangles with Alzheimer’s dementia.

1988: Prof. Claude Wischik and colleagues discover that the tangles are composed of tau protein and strive to develop a treatment to ‘Strangle the Tangle.’

NOW: TauRx initiates global Phase 3 clinical trials in Alzheimer’s and FTD.

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