Memory MattersA publication of the Johns Hopkins Memory & Alzheimer’s Treatment Center and Alzheimer’s Disease Research Center

Fall/Winter 2013

We encourage you to share this with your family and friends. If you would like extra copies, please call Carolyn Koch at 410-550-9021 or ckoch7@jhmi.edu.

National Recognition for the Importance of Alzheimer’s Disease Research and Care

The fight against Alzheimer’s disease (AD) has seen a legislative victory in the National Alzheimer’s Project Act, which resulted in the National Plan to Address Alzheimer’s Disease. This compre-hensive plan has numerous important goals, including treating and preventing Alzheimer’s disease, as well as optimizing family and care services for those already affected by the disease.

The prevalence of AD is projected to increase nearly threefold by 2050. This means AD will affect nearly 16 mil-lion Americans, creating additional burden on the number of affected families, the health care system and the economy.

This large public health crisis was rec-ognized when the government passed the National Alzheimer’s Project Act (NAPA). As a result of this legislation, ad-ditional funds have been invested in research on AD and related dementias. The Department of Health and Human Services also developed a National Plan to Address Alzheimer’s Disease. This plan contains multiple goals, all centered on finding more effec-tive treatments and optimizing the care and support available to those affected by the disease. One of these goals aims to prevent and effectively treat AD and related dementias by 2025 by coordi-nating national efforts in AD research and clinical care, and facili-tating the translation of this research into programs and practice. In addition, the plan outlines strategies for enhancing the quality of patient care. This involves providing unified, up-to-date train-ing for care providers and applying high-quality guidelines for care across settings. Increasing public awareness of Alzheimer’s

Staff Spotlight:Andrea Nelson, RNMemory Care Specialist, Johns Hopkins Memory & Alzheimer’s Treatment Center

What do you enjoy most about working with patients and families of the Memory Center? The most reward-ing part of my job is working with patients and families in navi-

gating the medical maze of appointments and diagnostic tests to find answers. I’m constantly amazed at their strength, courage and tenacity in fighting this disease. They are my heroes.

What do you hope will change in the next five years in the resources that are available to patients and families? I hope there will be a cure for the various disorders our patients face. Short of that, I hope that federal and private funding sources increase dramatically to provide the research necessary to delay onset and more effectively manage symptoms of memory disorders.

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Calendar of EventsOct. 20: Walk to End Alzheimer’sRegistration: 9 a.m.Susan B. Campbell Park1 Dock St., Annapolis, MDInfo: 410-561-9099, ext. 205

Oct. 20: Annual Alzheimer’s Awareness Purple Sunday for Central MarylandInfo: 301-696-0315 or jsample@alz.org

Nov. 2: Pythias A. and Virginia I. Jones African American Community Forum on Memory Loss8:30 a.m. to 2:30 p.m. Coppin State University, Talon Center2500 W. North Ave., Baltimore, MD 21216Info: 410-561-9099, ext. 222

Nov. 9: Journey to Hope Conference on Memory Loss8:30 a.m. to 2 p.m. Johns Hopkins Bayview Medical CenterAsthma & Allergy Center Auditorium5501 Hopkins Bayview Circle, Baltimore, MD 21224Registration/Info.: 800-789-0661

Apr. 25, 2014: Alzheimer’s Association Annual Dementia Conference: Making Connections8:30 a.m. to 4:30 p.m.Towson Sheraton North903 Dulaney Valley Rd., Baltimore, MDInfo: 410-561-9099, ext. 222

June 7, 2014 Holistic Health Seminar on Memory Loss 8:30 a.m. to 12:30 p.m. Randallstown Community Center3505 Resource Dr., Randallstown, MD 21133Info: 410-550-2281

June 20, 2014 ADRC Annual Conference on Aging and Dementia 9:30 a.m. to 2:30 p.m. Owen Auditorium (CRB)401 N. Broadway, Baltimore, MD 21205Info: 410-502-5109

If you have any questions about an event, please call the phone number listed above.

Memory Center Patient and Family Advisory Council

Rarely a day goes by without the mention of dementia in the media.We are all aware, now more than ever, that dementia is a problem that affects increasing numbers of people. The Johns Hopkins Memory and Alzheimer’s Treatment Center is comprised of health care professionals who work together to care for patients and families affected by memory and related cognitive disorders.

To help enhance the quality of patient-centered care, the Memory Center has established a Patient and Family Advisory Council (PFAC). The Council brings together patients, families and staff to ensure that patient and caregiver perspectives are acknowledged in the clinical setting. The mission of the council is to: •identifytheneedsandconcernsofthoseaffected •developpatientandfamilyfocusedprograms •provideongoingsupportandeducation •encourageinvolvementandadvocacy •strengthencommunicationwithphysiciansandstaff

At its quarterly meetings, PFAC members discuss a variety of top-ics, such as developing and maintaining resources at the Memory Center; participating at conferences; sharing recent news articles; educating families about the benefits of brain donation; and sup-porting community outreach. Complimentary parking and lunch are provided at each meeting.

PFAC is actively recruiting new members. Participants do not have to be directly involved with someone who has dementia, but should have a keen interest or desire to be part of a group that has experienced the disease firsthand.

To learn more about PFAC or to become a member, contact Andrea Nelson, RN, Memory Care Specialist, at 410-550-7211 or anelso18@jhmi.edu. For more information about the Memory Center, visit hopkinsmedicine.org/memory.

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Holistic Health Seminar on Memory Loss

Every year, the Outreach Program of the Johns Hopkins Alzheimer’s Disease Research Center offers many educa-tional opportunities about Alzheimer’s disease and memory loss. These events connect patients and families to available resources, while creating an opportunity for caregivers and individuals with memory problems to network with each other. One of the most popular events is the Holistic Health Seminar on Memory Loss, which celebrated its seventh anniversary on June 1.

Sponsored in part by faith-based organizations, the Holistic Health Seminar was previously held at local churches. Al-though it is now held at the Randallstown Resource Center, faith communities continue to make significant contributions to this outreach effort. They play a critical role in planning the event, as well as shaping the seminar’s vision and agenda.

With more than 250 people in attendance, this year’s Holistic Health Seminar focused on the link between vascular disease and dementia. Attendees learned how vascu-lar factors, such as diabetes, high blood pressure and high cholesterol, can serve as risk factors for both Alzheimer’s disease and stroke-related dementia. The link between these two seemingly unrelated conditions was discussed by Richard O’Brien, M.D., chair of neurology at Johns Hopkins Bayview Medical Center, and Wallace Johnson, M.D., assistant clinical professor at the University of Maryland School of Medicine.

Other presentations included Tamela McClam, M.D., a clinical fellow at Johns Hopkins Bayview, who described the 10 things that everyone should know about Alzheimer’s disease, and a panel discussion where caregivers pro-vided attendees with practical strategies for maintaining their health and quality of life.

Outreach awards were presented to community members who have helped create educational programs in the com-munity. This year, awards were presented to Carolyn Wallace, the former First Lady of Epworth United Methodist Chapel, and Betty Shelton and Gloria Muldrow co-founders of the Holistic Health Seminar on Memory Loss.

Pictured left to right: Reverend Horace Wallace, Epworth United Methodist Chapel; Ernestine Jones Jolivet, Memory

and Aging Community Advisory Board; Crystal Evans, Johns Hopkins Alzheimer’s Disease Research Center; and Valerie

Richardson, Memory and Aging Community Advisory Board

Save the Date! 8th Annual Holistic Health Seminar on Memory Loss

June 7, 2014

Sponsored by:Johns Hopkins Alzheimer’s Disease Research Center

Johns Hopkins Memory & Alzheimer’s Treatment Center

In partnership with:Epworth United Methodist Chapel Baltimore City Health Department Office of Aging and CARE Services

Alzheimer’s Association

disease also is a primary concern identified by this plan, both through public education and coordination of na-tional and international efforts to optimize resources.

NAPA represents a landmark national strategy for Al-zheimer’s disease. It aims to accelerate early diagnosis and treatment of AD, as well as to improve the care and sup-port programs that are available. The long-term goal is to reduce the personal, social and economic burden of this neurodegenerative disease. For more information about NAPA, visit aspe.hhs.gov/daltcp/napa/NatlPlan.shtml

National Recognition (continued from page 1)

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The Johns Hopkins Memory & Alzheimer’s Treatment Center

DirectorConstantine Lyketsos, M.D., MHSCo-directorsRichard O’Brien, M.D., Ph.D.Samuel Durso, M.D.Clinic Info.: 410-550-6337 Web: hopkinsmedicine.org/memory

The Johns Hopkins Alzheimer’s Disease Research Center

DirectorMarilyn Albert, Ph.D.Associate DirectorsConstantine Lyketsos, M.D., MHSPhilip Wong, Ph.D. Community Outreach: 410-550-2281 Education: 410-614-3040 Research: 410-550-9027Web: www.alzresearch.org

Research Studies Seeking ParticipantsYou can help us learn more about the diagnosis and treatment of individuals with memory problems by volunteering for a research study. Each study has different eligibility requirements for participants. Procedures, length of study and compensa-tion also may vary.

Magnetic Resonance Imaging (MRI) in Persons with Mild Memory Problems, Info.: 410-516-3813

Medication Trials for Depression in Alzheimer’s Disease, Info.: 410-550-4258

Medication Trials for Progression of Alzheimer’s Disease, Info.: 410-550-4258

Positron Emission Tomography (PET) in Persons with Mild Memory Problems, Info.: 410-550-4192

Sleep Studies in Persons with Mild Memory Problems, Info.: 410-955-1647

For more information about research studies conducted by the Johns Hopkins Alzheimer’s Disease Research Center, visit www.alzresearch.org.

Patient and Family Support GroupsSupport groups offer patients and loved ones a safe place to speak with others who have similar concerns and questions about coping with Alzheimer’s disease or related disorders.They provide mutual support, practical information and help members learn more about living with memory loss. They are free and open to the public.

Caregiver Support Group Second Wednesday of every month, 6-7 p.m. Johns Hopkins Bayview, John R. Burton Pavilion, first floor conference room Info.: 410-668-3729

Frontotemporal Dementia Support Group Second Wednesday of every month, 11 a.m-12:30 p.m.Alzheimer’s Association, 1850 York Rd., Suite D, Timonium, MDInfo.: 800-272-3900

Hopkins ElderPlus Caregivers Support GroupSecond Thursday of every month, 12:30-1:30 p.m.Johns Hopkins Bayview, Mason F. Lord Building, East Tower, Room E106Info.: 410-550-7044

Tudor Heights Support GroupLast Tuesday of every month, 6-7 p.m.7218 Park Heights Ave., Baltimore, MD 21208Info.: 410-318-8654

Web-based Family Support GroupSupported by the Jane K. Shapiro Dementia Care Programhopkinsmedicine.org/memory

For more information about support groups in your area, visit alz.org/Maryland and click on “Support Groups.”