It All Begins with Awareness...

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1 Awareness builds knowledge. Knowledge builds power. Power builds research. Research builds treatment. Treatment builds hope It All Begins with Awareness LBD Awareness Toolkit For more information about LBD Awareness Month, please visit, or call! visit: call: , ext. 104

2 Contents A Special Message from LBDA s Board President 3 Increasing Knowledge 4 Help to advance the cause by getting involved in community-based awareness efforts. Let s make Lewy body dementia a household name! Educate Others... 4 Promote LBD Awareness Month to Internists & Geriatricians... 4 Plan a Community Outreach Event... 4 Get the Word Out... 5 Reach Your Local Media... 5 Empower Yourself with 10 Facts about LBD... 6 Sharing Experience 8 No one should face LBD alone. We invite you to share your experience to help others, and we hope that by doing so, your burden becomes lighter. Launch a Support Group... 8 Participate in an LBDA Hub of Hope... 8 A Directory Makes it Easy... 8 Make a Connection... 8 Build the Hub... 9 Promote the Hub... 9 Building Hope 10 When you help raise much-needed support for LBDA s mission, you help build new hope for the 1.3 million families in the U.S. who are affected by this devastating disease. Plan a Special Event to Benefit LBDA Ask Questions: What should I do before I start planning my event? Make a List of Ideas Understand LBDA s Role in Your Event See it Through! Other Fundraising Ideas Awareness builds knowledge... 2

3 Dear Friend, Thank you for your commitment to raising awareness about Lewy body dementias (LBD)! LBD is the second most common form of dementia in the elderly, yet it stubbornly remains in the shadows of more well-known neurological diseases. The LBD Awareness Movement combines the efforts of LBD families across the country with those of LBDA to bring LBD out of the shadows. Awareness is our beacon, because: Awareness builds knowledge. Knowledge builds power. Power builds research. Research builds treatment. Treatment builds hope. Every single person who joins LBD Awareness Month is one more fiber in the muscle needed to fight LBD. Our LBD Awareness Toolkit was designed to provide you with resources and ideas for how you can get involved. We invite you to join us by organizing grassroots activities like the ones listed on the following pages in your community! Although we remain committed to increasing awareness about LBD 365 days a year, the month of October will truly be A Month To Remember, as LBD families and friends come together to raise awareness and support across the country. Together we CAN make LBD a household word and build hope for the millions of people who care about someone with LBD. Sincerely, Angela Herron President, LBDA Board of Directors Together, we are Increasing Knowledge Sharing Experience Building Hope 3

4 Increasing Knowledge Help to advance the cause by getting involved in community-based awareness efforts. Let s make Lewy body dementia a household name! Educate Others! Promote LBD Awareness Month to Internists and Geriatricians - Our number one awareness goal is to reach physicians in the medical community, so that people with LBD can be diagnosed accurately and as early as possible. You can help us move one step closer by reaching out to the largest practices in your local communities that provide care for older adults, such as internists and geriatricians. We ve created specialized materials to help increase LBD awareness among these primary care physicians and encourage their patients to report any LBD symptoms. These should be distributed to the largest practices for older adults in your community to post these materials during A Month to Remember in their waiting room and exam rooms. Watch for an announcement this summer regarding the availability of these materials. Plan a Community Outreach Event - Organize a community outreach event to bring Lewy body dementia out of the shadows and into the public eye. Together, we CAN make a difference in your workplace, your family or your community by educating the general public about LBD. Brainstorm! What kind of event would I like to host? Organize an educational event for the public. Partner with a local retirement community and a neurologist in your community. Organize a booth at a health fair Put up a bulletin board display at a public place like a library. We are here to help and can offer technical assistance for your event by ensuring that you start by asking the right questions. Before you begin planning for your community outreach event, be sure to schedule a meeting with a representative at LBDA. Contact Eva Bradley at ebradley@lbda.org. To request LBDA publications for displays or events, a detailed request to awareness@lbda.org. (Please include your name and mailing address.) 4

5 Get the Word Out Reach Your Local Media The media has tremendous power to inform and shape public opinion. Media coverage can significantly impact the way the general public thinks about people with dementias and the reality of living with diseases like LBD. Connecting with your local media can support your awareness raising activities in your local community by improving coverage of the LBD Awareness Movement. The very best way to get people to take notice of LBD is to put face on the disease. LBD families are urgently needed to contact their local media and offer to tell their own stories for A Month to Remember. The following tips will help guide you through media outreach: Tell Your Story No one can tell your story about LBD better than you. You know the painful cost of LBD to your whole family. And you have experienced the unexpected moments of laughter and tenderness that even LBD can t take away. Sharing your story will help make LBD an important cause to the people in your community and will bring comfort to LBD families who no longer feel so alone. Build a Media List It is important to identify key resources in your community to build successful media list. Compile a list of local reporters and newspaper contacts. Remember try to identify which reporters and news sources will be the most receptive to your story. Identify heath writers or senior editors who cover similar stories. Once you ve identified your contacts, reach out to them with a phone call or pitch letter to introduce yourself. Write a Press Release A press release, also known as a news release, is simply a written statement to the media. It is a tool that enables you to share your story. Local media is more likely to report feature a story that has a relevant tie to the community and features interesting subject matter. Watch your this summer for the availability of the LBD Media Kit. It will include detailed instructions, a sample press release and a PSA. 5 Knowledge builds power...

6 Empower Yourself with 10 Facts about LBD Standing Strong with LBDA means being counted as someone who understands how important it is for LBD to become a household word. Here are some important facts about LBD: Lewy body dementias (LBD) are the second most common form of degenerative dementia and is widely under-diagnosed: The only other form of degenerative dementia that is more common than LBD is Alzheimer s disease (AD). Many individuals who have LBD are misdiagnosed, most commonly with Alzheimer s disease if they present with a memory disorder or Parkinson s disease if they present with movement problems. LBD can have three common presentations: Some individuals will start out with a movement disorder leading to the diagnosis of Parkinson's disease and later develop dementia. Another group of individuals will start out with a memory disorder that may look like AD, but over time two or more distinctive features become apparent leading to the diagnosis of dementia with Lewy bodies (DLB). Lastly, a small group will first present with neuropsychiatric symptoms, which can include hallucinations, behavioral problems, and difficulty with complex mental activities, leading to an initial diagnosis of DLB. Regardless of the initial symptom, over time all three presentations of LBD will develop very similar cognitive, physical, sleep and behavioral features, all caused by the presence of Lewy bodies throughout the brain. The most common symptoms of LBD include: o Dementia: problems with memory and thinking o Hallucinations: seeing or hearing things that are not really present o Cognitive fluctuations: unpredictable changes in concentration and attention o Parkinson-like symptoms: rigidity or stiffness, shuffling gait, tremor, slowness of movement (bradykinesia) o Severe sensitivity to neuroleptics (medications used to treat hallucinations) o REM Sleep Behavior Disorder: a sleep disorder where people seemingly act out their dreams The symptoms of LBD are treatable: Currently there are no medications approved specifically for the treatment of LBD. All medications prescribed for LBD are approved for a course of treatment for symptoms related to other diseases such as Alzheimer s disease and Parkinson s disease with dementia and offer symptomatic benefits for cognitive, movement and behavioral problems. Early and accurate diagnosis of LBD is essential: Early and accurate diagnosis is important because LBD patients may react to certain medications differently 6

7 than AD or PD patients. A variety of drugs, including anticholinergics and some antiparkinsonian medications, can worsen LBD symptoms. Traditional antipsychotic medications may be contraindicated for individuals living with LBD: Many traditional antipsychotic medications (for example, haloperidol, thioridazine) are commonly prescribed for individuals with Alzheimer s disease and other forms of dementia to control behavioral symptoms. However, LBD affects an individual s brain differently than other dementias. As a result, these medications can cause a severe worsening of movement and a potentially fatal condition known as neuroleptic malignant syndrome (NMS). NMS causes severe fever, muscle rigidity and breakdown that can lead to kidney failure. Early recognition, diagnosis and treatment of LBD can improve the patients quality of life: LBD may affect an individual s cognitive abilities, motor functions, and/or ability to complete activities of daily living. Treatment should always be monitored by your physician(s) and may include: prescriptive and other therapies, exercise, diet, sleep habits, changes in behavior and daily routines. Individuals and families living with LBD should not have to face this disease alone: LBD affects every aspect of a person their mood, the way they think, and the way they move. LBD patients and families will need considerable resources and assistance from healthcare professionals and agencies. The combination of cognitive, motor and behavioral symptoms creates a highly challenging set of demands for continuing care. LBDA was formed to help families address many of these challenges. Physician education is urgently needed: An increasing number of general practitioners, neurologists, and other medical professionals are beginning to learn to recognize and differentiate the symptoms of LBD from other diseases. However, more education on the diagnosis and treatment of LBD is essential. More research is urgently needed! Research needs include tools for early diagnosis, such as screening questionnaires, biomarkers, neuroimaging techniques, and more effective therapies. With further research, LBD may ultimately be treated and prevented through early detection and neuroprotective interventions. Currently, there is no specific test to diagnose LBD. Power builds research 7

8 Sharing Experience Lewy body dementia has united us in passion and dedication as we care for our loved ones with this devastating disease. No one should face LBD alone. We invite you to share your experience to help others, and we hope that by doing so, your burden becomes lighter. Launch a Support Group Sharing is relieving. That is how one LBD caregiver describes his support group experience. Caregivers need encouragement from others who are going through similar situations. Join LBDA s support group network by starting a support group in your local area. To learn how to become a support group facilitator, complete the Volunteer Interest Form. Participate in an LBDA Hub of Hope An LBDA Hub of Hope is a network of 5 or more LBD Awareness Movement members in geographic proximity of less than 50 miles who are actively engaging in LBD outreach and awareness activities. The LBDA Hub of Hope provides opportunities to connect with LBD families and friends in your area, build a network of resources for caregivers and people with LBD, while participating in social and educational programs established individually or collectively by LBD Awareness Movement members in your hub. A Directory Makes it Easy To make it easy for Hubs of Hope to form, LBDA is pleased to launch its first LBD Awareness Movement Volunteer Directory. The directory will contain key contact information for volunteers who have expressed an interest in connecting geographically with other LBD families and friends. Use the directory to connect with other LBD Awareness Movement volunteers in your region to help organize events and promote activities to connect with other LBD families. Make a Connection All LBD Awareness Movement members who sign up by July 22, 2011 and opt in to be included will be listed in the 2011 Awareness Movement Volunteer Directory. All volunteers opting out of the directory will also receive access to this powerful tool in August, 2011, in hopes that they too may choose to connect with volunteers near them. Research builds treatment... 8

9 Build the Hub While there is no requirement other than geographic proximity and interaction of members in order to create an LBDA Hub of Hope, the following combinations of events and activities would build synergy in community-based LBD awareness and advancement of the LBD cause: A new or existing LBD Support Group A community outreach educational event A special event to support LBDA One designated person to facilitate communications between members and to let LBDA know about your Hub Promote the Hub Report the launch of your LBDA Hub of Hope to LBDA in September and let us tell the world about you and the exciting activities you have planned! Watch for s this summer about the LBD Awareness Movement Volunteer Directory! 9

10 Building Hope When you help raise much-needed support for LBDA s mission, you help build new hope for the 1.3 million families in the U.S. who are affected by this devastating disease. Plan A Special Event to Benefit LBDA The cornerstone of a successful fundraising event is the combination of planning and commitment. An activity that is successful for one group of volunteers may not yield the same results or guarantee success. It is important to take the AMBITOUS approach to your special event A sk Questions M ake a list of ideas B uild a budget and set a goal T asking and timelines I nsurance, permitting and licensing O rganize your team of volunteers U nderstand LBDA s role in your event S ee it through! Ask Questions: What should I do before I start planning my event? Before you begin planning for your special event, be sure to schedule a meeting with a representative at LBDA. We are here to help and offer technical assistance with your event while ensuring that you start by asking the right questions. How much money do you want to raise through your event/activity? How much money will you need to cover the initial costs on the front end of the event? Determining this figure will help you decide what type of fundraiser to host. Events that are costly to produce may not be a viable option for new event planners. How many people can you recruit to help with the event? Special events are best executed when tasks are shared within a group. Seeking support from family, friends, community members and other LBD families will help make task more manageable and enjoyable. You can use volunteers as a sounding board for opinions, input or suggestions. Gathering insight from others can be a fundamental piece in selecting the ideal event for your community. Creating a sense of ownership and investment will keep your volunteers engaged and enthusiastic about seeing your event to completion. 10

11 What type of event will be successful in your community? What type of event has worked before? What types of events have other LBD families successfully hosted? Answers to these questions will help you determine what activities you may want to replicate and what things you may want to leave out. Make a list of ideas The success of your fundraising event will rely heavily on your ability to choose an event which you and your friends & family will enjoy. To help get you started, we have compiled a list of suggested fundraising event ideas. LBDA encourages you to get creative and develop your own ideas if you have an interest that is not listed below. Art show Auction Bake sale Barbeque Benefit concert Bicycle tour Ball/Gala Car Wash Dance-a-thon Golf Tournament Holiday party Road Race Raffle Reception Tennis Tournament Walk-A-Thon Yard sale/garage sale Set a fundraising goal It is important to set a goal that is realistic. We suggest setting your goal in accordance with the planning and preparation time for your event. 1-3 months $500-$1000 goal 3-6 months $1000-$5000 goal 6-12 months $5000+ Understand LBDA s role in your event Now that you know WHAT you want to do, work with your LBDA special events partner to establish a budget to support your goal. LBDA will provide you with event planning resources, marketing advising and many other tips and tools to help ensure your event is a success. Contact Eva Bradley, LBDA s Special Events and Volunteer Coordinator to set up a special event planning meeting at specialevents@lbda.org. 11

12 See it through! Fundraising is all in the ask! Someone is more likely to give when they are personally asked. They will feel encouraged by your cause and will want to become part of your special event... because it is important to YOU. But you must ask. It's easier than you think. And you will be surprised who will take you up on your offer. Keep in mind that even with all the daunting details, it will be a great, fun day... one that YOU inspired and created! You are making an impact in your community for LBDA while raising funds for a brighter future for families affected by LBD. We couldn't do it without you. Advice from LBDA volunteer and board member Coleen Greco, who is part of our 2011 Awareness Movement leadership team and is also organizing her second 5k Run/Walk to benefit LBDA: Special events are a lot of fun and they can also be hard work! Give yourself plenty of time to plan and organize your event. Talk with a volunteer who has organized a similar event and who can share their experience and recommendations with you. Remember, It All Begins With Awareness! Treatment builds hope! 12

13 Other Fundraising Ideas LBDA has other ways to raise money without having an event. Here are a few fundraising tips to promote awareness and support the LBDA cause: Create a personal fundraising page online. Through the online fundraising tool Firstgiving, you can leverage the power of your online network to raise awareness and funds for LBDA. Online fundraising pages make raising money and make donating easy! Personal fundraising pages are great ways to have family; friends and coworkers support your favorite cause. Visit and get started today! Have a Wear Jeans to Work Day that people make a donation and they get to wear jeans to work that day. Take photos and share with LBDA as you raise awareness in your office! Contact Eva Bradley, LBDA s Special Events and Volunteer Coordinator to set up a special event to set up a special event planning meeting at specialevents@lbda.org. Participate in a local event in your community by visiting Once you ve found an event for which you would like to participate (a run/walk, golf tournament, swim meet), create a personal fundraising page through Firstgiving and then challenge your family, friends, and coworkers to support your fundraising target for LBDA. It All Begins Awareness With 13

14 Contact Us at LBDA s National Office call: , ext. 104 fax: awareness@lbda.org visit: mail: Lewy Body Dementia Association 912 Killian Hill Road, S.W. Lilburn, GA Lewy Body Dementia Association Our Mission Through outreach, education and research, we support those affected by Lewy body dementias. Our Vision We envision a cure for Lewy body dementias and quality support for those still living with the disease. 14