Frequently Asked Questions

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About BrainGuide
Understanding Brain Health
Using BrainGuide
Creation of BrainGuide
About Medical Experts & Questionnaires
How to Get Started
About BrainGuide
Understanding Brain Health
Using BrainGuide
Creation of BrainGuide
About Medical Experts & Questionnaires
How to Get Started

Frequently Asked Questions (FAQs)

ABOUT BRAINGUIDE™

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What is BrainGuide?

BrainGuide™ by UsAgainstAlzheimer’s is a first-of-its-kind, free platform that empowers people with knowledge and resources to take the best next steps in managing their own or a loved one’s brain health. BrainGuide helps people get started with confidence, wherever they are, in their brain health journey.

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What does BrainGuide include?

BrainGuide includes a confidential memory questionnaire - taken over the phone or online in English or Spanish - followed by tailored education and resources based on the answers provided. The memory questionnaires can be self-administered or taken by a caregiver. BrainGuide is not intended to diagnose or make treatment recommendations regarding Alzheimer’s or any other disease.

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Who is BrainGuide designed for?

BrainGuide is designed for people of all ages and from all communities. Whether you are proactively working to improve your brain health, concerned about your memory, seeking more information after receiving a diagnosis or are caring for a loved one living with Alzheimer’s - BrainGuide offers relevant education and resources.

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Does the BrainGuide questionnaire provide a diagnosis?

BrainGuide is not intended to diagnose or make treatment recommendations regarding Alzheimer’s or any other disease. BrainGuide can guide you toward information and resources that help inform the next best steps you or a loved one can take.

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How does BrainGuide work?

The BrainGuide memory questionnaire can be completed as a self-administered questionnaire or completed out by a caregiver or someone close to you. Each person who uses BrainGuide receives a set of resources that are tailored to their responses. These resources address risk-reduction approaches, ways to check memory concerns, how to support a family member, or ways to take action after a diagnosis of mild cognitive impairment (MCI) or Alzheimer’s disease.

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How was BrainGuide created?

BrainGuide was created by UsAgainstAlzheimer’s with in-kind and financial support from Biogen. The platform runs on Amazon Web Services (AWS), using state-of-the-art technologies to power the memory questionnaire capability and make it available to anyone with a telephone or Internet access. BrainGuide was developed with input from potential users as well as medical experts. UsAgainstAlzheimer’s will continue to work with leaders in brain health and Alzheimer’s disease to ensure BrainGuide reflects the latest scientific advances.

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How were the memory questionnaires developed?

The BrainGuide memory questionnaires are based on validated questionnaires that have been adapted for the phone and the web. This makes it easier than ever for people concerned about brain health to get access to resources from the comfort of their own homes.

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What is the technology behind BrainGuide?

BrainGuide uses state-of-the-art technology from Amazon Web Services (AWS). AWS expertise brings the memory questionnaire to life and leverages technology to make it accessible to anyone with a telephone or access to the Internet.

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What makes BrainGuide different from other brain health resources?

BrainGuide makes it easy for you to learn about brain health and inform the next best steps in your or a loved one’s journey. In the past, people have struggled to find the right information for them on brain health or Alzheimer’s. People often don’t know where to start, and they may be afraid to ask for help.

BrainGuide is a first-of-its-kind platform designed to address these problems and help you take meaningful action. It provides confidential brain health information and tailored resources in a way that is easy to access and act on.

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How does BrainGuide help in the fight against Alzheimer’s?

UsAgainstAlzheimer’s is launching BrainGuide to accelerate the next stage of the Alzheimer’s movement. It follows key scientific advances in risk reduction, greater understanding of the importance of brain health, and growing public awareness of Alzheimer’s to empower everyone to take steps to maintain their brain health.

UNDERSTANDING BRAIN HEALTH

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What is brain health?

Brain health is about making the most of your brain and taking action to reduce the risk of cognitive decline as you age. There is strong evidence that you can protect your brain health by making key lifestyle changes, such as getting regular exercise, engaging with other people, keeping your heart healthy and asking your doctor for regular brain health check-ups.

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Why is it important to protect my brain health?

A healthy brain is important for your well-being, your memory and your life. We all need to treat our brain as vital organs and pay attention to our brain health. This means taking simple, everyday steps to protect your brain, getting regular brain health check-ups, and talking to your doctor if you notice memory changes.

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What can I do to protect my brain health?

You can take steps every day to protect your brain. These include regular exercise, healthy eating and getting enough sleep. Your mental wellness is important too, with activities such as staying engaged with others and keeping your brain active with a job, volunteering, hobbies or other activities.

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What is mild cognitive impairment (MCI)?

Mild cognitive impairment, which is often referred to as MCI, is the stage between the natural cognitive decline of aging and the more serious decline associated with dementia. Mild cognitive impairment is often identified by problems related to memory, language, thinking or judgement. (Mayo Clinic)

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What is Alzheimer’s disease?

Alzheimer’s disease is the most common form of dementia, a progressive brain disease that slowly destroys memories and thinking skills. Alzheimer’s often starts 5, 10, or even 20 years before symptoms appear. Symptoms usually start with difficulty remembering new information. In advanced stages, symptoms include confusion, mood and behavior changes and inability to care for one’s self and perform basic life tasks. Alzheimer’s is ultimately fatal.

USING BRAINGUIDE

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How do I get started with BrainGuide?

You can take the confidential memory questionnaire online through the BrainGuide website (mybrainguide.org) or answer questions over the phone by calling our automated phone service at 855-272-4641. Based on the responses to the questions, BrainGuide will provide resources that are tailored for you based on responses to the questions you’ve provided.

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What is the memory questionnaire?

The self-administered questionnaire can be completed via web or voice bot. The questionnaire is based on the Memory Impairment Screen, which is used under license by Albert Einstein College of Medicine. The caregiver questionnaire can be completed via web or voice bot. This questionnaire is based on the AD8, which is used under license by Washington University in Saint Louis.

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I haven’t been diagnosed with mild cognitive impairment (MCI) or Alzheimer’s. Is BrainGuide right for me?

Yes. BrainGuide helps you wherever you are in your brain health journey. It can help anyone interested in protecting their brain health and reducing their risk for cognitive decline, or those concerned about a family member.

The memory questionnaire is just one part of BrainGuide. The BrainGuide website offers a resource library where you can explore more information about brain health, mild cognitive impairment (MCI), and Alzheimer’s disease. Explore the brain resource center on mybrainguide.org. It’s important to know that you do not have to complete a memory questionnaire to access these resources.

You can sign up for a 30-day Brain Health Challenge for daily tips on brain healthy activity, and BrainGuide can also provide information on identifying early symptoms of Alzheimer’s, so you can spot early signs of cognitive decline and take action. BrainGuide is not intended to diagnose or make treatment recommendations regarding Alzheimer’s or any other disease.

For those taking care of loved ones, the BrainGuide resource center has resources on how you can provide the best care, while meeting your own needs.

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Can I use BrainGuide on behalf of a family member?

Yes. BrainGuide has a memory questionnaire that can be completed by a caregiver. When you visit the BrainGuide website at mybrainguide.org or call our automated phone service at 855-272-4641, you will be asked whether you are looking for information for yourself, or on behalf of someone else. Caregivers will have the option to go through a short, guided questionnaire and answer questions based upon their experience with a family member.

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How will BrainGuide share my tailored resources when I complete the memory questionnaire?

BrainGuide will only share your tailored resources with you. If you access BrainGuide online, a link to brain health guidance and resources will be displayed on screen after you complete the memory questionnaire. You will also have the option of entering your email address to obtain a summary of your questionnaire and a link to relevant resources directly in your inbox.

If accessing BrainGuide over the phone, you will have the option to receive a text message with a link to tailored resources after you complete the questionnaire.

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What should I do once I complete the questionnaire?

Once you’ve completed the BrainGuide questionnaire, you are encouraged to explore the tailored resources provided. Based on your answers, these resources will help guide you on your next steps. This may include starting practices to improve your cognitive fitness, engaging your doctor on a potential brain health screening, planning for the future after an Alzheimer’s diagnosis or accessing a caregiver toolkit.

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How can I talk about BrainGuide with my doctor?

BrainGuide aims to give you the knowledge and confidence to ask your doctor about brain health and memory for you and your loved one. When you have completed the questionnaire, you are provided a link to tailored resources based on your responses as well as the option to receive a summary email that you can take to your doctor.

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How are you addressing privacy?

Privacy is a top priority for BrainGuide. That’s why questionnaires are completely confidential. The answers provided by the user are stored anonymously to help BrainGuide understand usage, identify better ways to serve the community and improve our service. Transaction logs are kept for up to three days to support system processes and troubleshooting. You can review our full privacy policy here.

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Does BrainGuide collect or track any of my personal information?

We do collect and store emails if provided by a user for communication purposes. In order to provide better user experience, we store phone numbers to identify repeat callers. Responses to the memory questionnaires are stored anonymously to help us improve our service. You can read the full BrainGuide privacy policy online here.

CREATION OF BRAINGUIDE

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Who created BrainGuide?

UsAgainstAlzheimer's, a patient and caregiver advocacy organization, worked closely with medical, technology, and industry experts to create BrainGuide. BrainGuide was created with in-kind and financial support from Biogen. The platform runs on Amazon Web Services (AWS), using state-of-the-art technologies to power the memory questionnaire capability and make it available to anyone with a telephone or Internet access.

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Who is UsAgainstAlzheimer’s?

UsAgainstAlzheimer’s exists to conquer Alzheimer’s disease. Since our founding in 2010, we have taken on the toughest problems in the fight to end Alzheimer’s. Our work is driven by the urgency to find effective treatments and the prevention steps needed to reach the time where no one is lost to Alzheimer’s.

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How did you address diversity in the creation of BrainGuide?

UsAgainstAlzheimer’s is committed to creating the BrainGuide platform without educational and cultural bias. We have a robust approach to ensuring that BrainGuide is relevant and accessible to all communities. The platform is available in English and Spanish. We also conducted market research with diverse communities on an ongoing basis, and our quantitative research included 30% of non-white respondents and a wide range of income and educational levels. Our ongoing user testing aims to include a diverse set of stakeholders. We continue to meet with diverse medical experts that serve black and brown communities for their input and engagement. As we begin to promote BrainGuide, we will have an integrated approach that includes best practices for reaching black and brown communities through Search Engine Optimization, Paid Search and through a focused approach at Latinx media outlets. Additionally, we are working with diverse partners and community groups that reach communities of color to share the BrainGuide platform.

ABOUT MEDICAL EXPERTS AND QUESTIONNAIRES

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Was BrainGuide checked by experts?

Yes. BrainGuide was developed and launched with input from medical experts. UsAgainstAlzheimer’s will continue to work with leaders in brain health and Alzheimer’s disease to make sure that BrainGuide can reach more people, offer richer resources and continue to incorporate the latest scientific and medical advances.

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What research was conducted to create BrainGuide?

The design and development of BrainGuide was informed by market research that included real-time qualitative and quantitative feedback from users.

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Is the BrainGuide memory questionnaire validated by experts?

The BrainGuide memory questionnaire platform was developed with input from medical experts and based on validated questionnaires that have been adapted for the phone and the web.

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What kind of cognitive tools were used to develop BrainGuide?

The BrainGuide memory questionnaires are adapted from commonly applied and validated tools in the healthcare community. The self-assessment is based on the MIS/MIS-T (which is used under license from Albert Einstein College of Medicine) and the caregiver assessment is based on the AD8 (which is used under license from Washington University in Saint Louis). These assessments were adapted for use with a voice or web bot. They are not intended to diagnose or make treatment recommendations.

HOW TO GET STARTED

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How do I get started?

BrainGuide can be found online at mybrainguide.org or accessed as an automated phone service at 855-272-4641. BrainGuide is available in both English and Spanish.