Attitudes And Perceptions About Brain Donation Among African Americans

Synopsis: Evaluating the brain after death is considered the gold standard for diagnosing most brain disorders. However, while Black\African Americans are twice as likely to develop Alzheimer’s disease as compared to non-Hispanic Whites, they make up less than 2% of brain donations for research. More participation of Black / African Americans in this research will be important to make progress toward effective treatments.

Results: We have looked at attitudes toward brain donation and perceptions of medical research. Surveys distributed to 227 Black\African American community members found that:

  • 27% reported being likely to donate their brain to research after death vs. 32% who reported not being likely.
  • 73% of people said that they trust medical researchers.
    Few people had ever been asked to donate their brain (11%) or a loved one’s
    brain (6%).
  • Families play a major role in the decision for brain donation. Many people were
    not confident if their family would carry out their wish for brain donation to
  • Most people believe that their family would be more likely to discuss brain
    donation if they had more information about it.

Conclusions: This survey serves as a first step in increasing our understanding of how to engage Black / African Americans in brain donation research. Overall, the major takeaways from the survey are:

  • Though community members reported relatively low levels of knowledge about
    Alzheimer’s disease and brain donation research there was also high levels of
    trust and hope in research and science to cure diseases which may be an
    important opportunity for sharing the importance of brain donation so that
    community members can make informed decisions about participating in
    research and brain donation.
  • Only about a quarter of the surveys were completed by males. More efforts to
    find out about how to interest Black\African American males in research on
    Alzheimer’s disease and brain donation are critically needed. Providing this
    information to men in locations where men are already gathered, such as
    barbershops or faith-based institutions may be a useful approach.

Understanding 10 Early Signs and Symptoms of Alzheimer’s and Dementia

Understanding the Early Signs and Symptoms of Alzheimer’s and Dementia

Alzheimer’s disease and dementia are progressive neurological disorders that significantly impair cognitive functions, notably affecting memory, reasoning, and the ability to perform everyday activities. These conditions evolve gradually, often making early signs subtle and easily overlooked. Recognizing these early symptoms is crucial for timely medical intervention and effective long-term management. This guide gives a detailed look at the main symptoms to watch for if you or someone close to you might be facing these challenges.

Memory Loss That Disrupts Daily Life

Memory loss is often the most prominent and commonly recognized symptom of Alzheimer’s. This goes beyond just small moments of forgetfulness, like losing your keys. It also includes forgetting important dates, daily events, and key conversations.

Such memory lapses can be both disorienting and distressing, affecting an individual’s ability to function independently. People with Alzheimer’s may repeatedly ask the same questions, even after someone has given them an answer. They may also use memory aids like sticky notes, digital reminders, or help from family to help with daily tasks. Memory loss at this level impacts personal and professional life, showing how serious the disease is.

Challenges in Planning or Problem Solving

Individuals in the initial stages of Alzheimer’s often find it increasingly difficult to create plans or solve problems. Symptoms may include difficulty following tasks that were once straightforward. Some examples are cooking familiar recipes and managing personal finances. The reduction in cognitive abilities can lead to heightened stress and anxiety.

Difficulty Completing Familiar Tasks

As Alzheimer’s progresses, even routine tasks can become daunting challenges. Those affected may have trouble finding their way around places they know.

They may also have trouble keeping track of their work finances. Additionally, they may struggle to remember how to play games they used to enjoy without any effort. These challenges are clear indicators of cognitive decline and signal the need for medical evaluation and intervention.

Confusion With Time or Place

One of the hallmarks of early-stage dementia is a loss of understanding of time and place. Individuals may lose track of dates, forget the current season, or have difficulty understanding the passage of time. They may feel disoriented—not just temporarily but in a more persistent manner that affects their daily functionality.

Confusion can be distressing for people who can’t recognize their surroundings or what they should do. This experience can make them feel anxious and overwhelmed. Providing clear instructions and guidance is important to help them feel more comfortable and confident. This can help reduce their stress and improve their overall experience.

Visual and Spatial Difficulties

Visual and spatial difficulties are also significant indicators of Alzheimer’s. Affected individuals may experience trouble with reading, judging distance, distinguishing colors, or recognizing faces. These problems can be especially troublesome because they can impact driving, navigating new places, and participating in regular activities. This can make daily routines and personal safety more difficult.

Problems With Words in Speaking or Writing

Communication issues are prevalent among those with Alzheimer’s. Affected individuals may struggle to follow or maintain conversations, find appropriate words, or may repeat phrases and sentences. Interruptions in speech or not being able to continue a conversation are common and can significantly hinder effective communication and social interactions.

Misplacing Things

Misplacing personal items in unlikely places is a common issue faced by individuals with Alzheimer’s. This could involve placing keys in the freezer or a wallet in the sugar bowl. They often have trouble remembering where they put their belongings. This can cause frustration and accusations of theft because of memory problems.

Decreased Judgment

Alzheimer’s often leads to a noticeable decline in judgment and decision-making abilities. This might manifest as poor financial decisions, such as spending money in error, or neglecting personal grooming and hygiene. Such behaviors are out of character for the individual and indicative of cognitive decline.

Withdrawal From Social Activities

As they notice changes in their cognitive abilities, individuals with Alzheimer’s may withdraw from activities they previously enjoyed. This could include social activities, work projects, or hobbies. Realizing you can’t do as much as before can make social interactions less enjoyable and more stressful. This can lead to feeling more alone and a lower quality of life.

Changes in Mood and Personality

Mood and personality changes are common as Alzheimer’s progresses. Individuals may experience increased confusion, suspicion, depression, fear, or anxiety. These emotional fluctuations can significantly affect individuals, especially in unfamiliar settings, and can result in increased social withdrawal.

Strategies for Managing Early Symptoms

Understanding and recognizing the signs of Alzheimer’s and dementia is the first step in managing the condition effectively. If you have any of these symptoms, you should schedule a visit to see a doctor.

An early diagnosis allows for the use of medications that can slow down symptoms and improve quality of life. The diagnosis can help manage the symptoms better and improve the overall quality of life. Patients can use medications to slow down the progression of symptoms and improve their quality of life.

Additionally, lifestyle changes, including maintaining a healthy diet, regular physical exercise, and engaging in cognitive exercises, can help manage symptoms and support cognitive health. Creating a supportive environment that reduces stress and confusion can also be beneficial. This could mean using clear labels at home. Sticking to a routine and simplifying daily tasks can also help reduce mental strain.


A positive diagnosis of Alzheimer’s disease can feel like a lot to handle. However, knowing the early signs and symptoms can be helpful. This knowledge can empower individuals and their families to take action. They can start managing and caring for the condition sooner.

With appropriate support, interventions, and lifestyle adjustments, those with Alzheimer’s can continue to lead meaningful lives. Recognizing these signs can help caregivers and families deal with Alzheimer’s and dementia. It can also help them prepare for the changes that come with these conditions.

Self-Care Strategies for Individuals Newly Diagnosed with Alzheimer’s Disease

Receiving a diagnosis of Alzheimer’s disease can be overwhelming and may evoke a range of emotions from shock to sadness. However, focusing on self-care can help manage the disease’s progression and maintain quality of life. Here are some essential self-care strategies for those recently diagnosed with Alzheimer’s.

1. Educate Yourself About the Disease
Understanding Alzheimer’s is crucial. Knowledge about the disease’s progression, treatment options, and lifestyle management can empower you and reduce anxieties about the unknown. Reliable sources include the Alzheimer’s Association, medical professionals, and educational books and materials specifically about dementia care.

2. Establish a Support Network
Build a supportive network that includes family, friends, and healthcare professionals. Support groups can also be invaluable, providing a space to share experiences and coping strategies with others facing similar challenges.

3. Manage Health Proactively
Work with healthcare providers to manage the disease and any other health issues. This might include regular check-ups, medication management, and following medical advice closely. Proper management can slow the progression of symptoms.

4. Maintain a Healthy Lifestyle
A balanced diet, regular physical activity, and adequate sleep are foundational to managing Alzheimer’s. Brain-healthy foods, such as those rich in antioxidants and omega-3 fatty acids, can support brain health. Exercise can enhance heart health and possibly improve cognitive function.

5. Establish Daily Routines
Routine can be comforting for those with Alzheimer’s, as it provides structure and predictability. Try to keep regular times for activities like meals, bedtime, and exercise.

6. Keep Your Brain Active
Engage in activities that stimulate the brain. This might include puzzles, reading, or playing music. Learning new skills or hobbies can also provide stimulation and a sense of accomplishment.

7. Simplify Tasks and Environment
Make daily life easier by organizing and simplifying your living space. Labeling cabinets, using safety devices, and removing clutter can reduce frustration and enhance safety.

8. Plan for the Future
Early in the diagnosis, it’s important to discuss and plan for future care preferences. This might involve legal and financial planning, including the designation of a power of attorney and discussing living arrangements.

9. Practice Stress Management Techniques
Stress can exacerbate Alzheimer’s symptoms, so it’s important to find effective ways to relax and manage stress. Techniques such as mindfulness, meditation, gentle yoga, or even regular walks can be helpful.

10. Stay Socially Connected
Maintaining social connections can provide emotional support and stimulate cognitive function. Participate in social activities, family gatherings, or community programs designed for individuals with Alzheimer’s.

Caring for yourself after an Alzheimer’s diagnosis is crucial for managing the disease effectively. By adopting these strategies, individuals can maintain their independence longer and improve their quality of life. Remember, you are not alone on this journey—utilize resources and support systems available to you for the best possible care.

Living With Alzheimer’s: Navigating the Day-to-Day Realities

Alzheimer’s disease is more than just a medical condition; it’s a deeply personal journey that affects every aspect of life for those diagnosed and their loved ones. Living with Alzheimer’s means adapting to a progressively changing landscape of capabilities and emotions. This article explores the day-to-day realities of living with Alzheimer’s, highlighting both the challenges and the strategies that can help manage the journey.

Understanding the Impact
Alzheimer’s disease progressively impairs cognitive abilities, affecting memory, thinking skills, and problem-solving. This can lead to confusion, frustration, and a feeling of loss as one’s mental faculties decline. Simple tasks that were once taken for granted—remembering names, following conversations, managing finances—become increasingly difficult.

Emotional Rollercoaster
Living with Alzheimer’s can be an emotional rollercoaster, not just for the person diagnosed but also for their family and friends. The person with Alzheimer’s may experience a range of emotions, from anger and frustration to depression and apathy. Emotional support from loved ones is crucial, as it provides comfort and helps maintain emotional stability.

Daily Life Adjustments
As Alzheimer’s progresses, daily routines and environments often need to be adjusted to manage the disease’s impact effectively. This might involve:

Structured routines to provide a sense of security and predictability.
Safety modifications in the home to prevent accidents.
Simplified choices to reduce confusion and decision-making stress.

Coping with Memory Loss
Memory loss is one of the most common and challenging symptoms of Alzheimer’s. Individuals may forget familiar faces, important events, or personal history. Coping strategies include:

Memory aids, such as notebooks, labeled photos, and digital reminders.
Regular routines that help reinforce memory through repetition.
Engaging storytelling where family and friends share memories and stories to help jog recognition.

Navigating Social Interactions
Social interactions can become challenging due to difficulties with communication and behavioral changes. However, social engagement is vital for emotional health and cognitive function. Tips for navigating social interactions include:

Small group settings, which can be less overwhelming.
Clear communication, using simple sentences and maintaining eye contact.
Continued social activities, adapted to fit the current capabilities of the person with Alzheimer’s.

The Role of Caregivers
Caregivers play an essential role in the life of someone with Alzheimer’s. The responsibility is substantial, often involving management of daily activities, medical care, and emotional support. Caregivers need to practice self-care as well, ensuring they have the resilience and resources to provide effective support.

Finding Support
Numerous resources and support systems are available for those living with Alzheimer’s and their caregivers. Support groups, both in-person and online, can offer advice, companionship, and understanding from those on similar journeys. Professional help from counselors or therapists can also be beneficial.

Living with Alzheimer’s is undoubtedly challenging, but with the right strategies and support, it can be managed. Adapting to the changes, seeking support, and focusing on quality of life can help ensure that both those with Alzheimer’s and their caregivers find meaning and joy in their daily interactions. Remember, you are not alone in this journey—embracing community resources and shared experiences can provide comfort and guidance.

Empowering Education: How Alzheimer’s Patients Can Learn About Their Condition

For individuals diagnosed with Alzheimer’s disease, gaining a deeper understanding of their condition is crucial. Education not only empowers patients but also equips them to manage their symptoms better and communicate their needs effectively. Here’s a guide on how Alzheimer’s patients can educate themselves about the disease and its implications.

Start with Reliable Sources

1. Alzheimer’s Associations and Foundations

    • Organizations such as the Alzheimer’s Association provide a wealth of information specifically tailored for patients. These resources often include details about symptoms, treatment options, and living with the disease. Many organizations also offer brochures, books, and online articles that are easy to understand and accessible.

2. Healthcare Providers

    • Neurologists, geriatricians, and other healthcare professionals involved in Alzheimer’s care are invaluable resources. Patients should feel encouraged to ask questions during their appointments and request additional information on aspects of the disease they find confusing or worrisome.

Utilize Educational Programs

1. Workshops and Seminars

    • Many community centers, hospitals, and clinics host educational workshops and seminars for Alzheimer’s patients and their families. These programs are designed to provide direct education on managing everyday life with Alzheimer’s, understanding treatment options, and preparing for the progression of the disease.

2. Online Courses and Webinars

    • With the advent of digital technology, many reputable platforms offer online courses or webinars that Alzheimer’s patients can attend from the comfort of their home. These sessions often cover a range of topics from the basics of Alzheimer’s disease to advanced care strategies.

Engage with Support Groups

1. Peer Learning

    • Support groups are not only for emotional support but also act as a platform for educational exchange. Engaging with others who are at various stages of the same condition can provide insights and practical advice that is directly relevant and immediately applicable.

2. Family and Caregiver Involvement

    • Education is more effective when it includes family members and caregivers. Joint sessions help ensure that everyone involved understands the disease process and can work together to provide the best support.

Leverage Multimedia Resources

1. Videos and Interactive Media

    • Visual aids, including educational videos and interactive media, can help in understanding complex aspects of Alzheimer’s disease. Many patients find these tools helpful for retaining information and staying engaged in their education.

2. Apps and Technology

    • Various apps designed for Alzheimer’s education can provide interactive learning experiences and reminders for medications and appointments. These tools are particularly useful for those comfortable with smartphones and tablets.

Document Personal Experiences

1. Journaling and Personal Records

    • Keeping a journal or personal health record can be educational for Alzheimer’s patients. Documenting symptoms, treatment responses, and daily challenges can help patients and their doctors make better-informed decisions about care.

Regular Updates

1. Stay Updated with Research

    • The field of Alzheimer’s research is always evolving. Subscribing to newsletters from Alzheimer’s research organizations or medical journals can keep patients informed about the latest findings and emerging treatments.


Education is a powerful tool for managing Alzheimer’s disease. By utilizing a combination of reliable medical information, interactive learning opportunities, and personal engagement, patients can face their diagnosis with confidence. Understanding Alzheimer’s not only helps in managing the disease but also in maintaining a quality of life that is as rich and fulfilling as possible.

Navigating the Initial Stages: A Guide for Newly Diagnosed Alzheimer’s Patients

Navigating the Initial Stages: A Guide for Newly Diagnosed Alzheimer’s Patients
Receiving a diagnosis of Alzheimer’s disease can be a pivotal moment filled with uncertainty and concern. However, arming yourself with knowledge and understanding what steps to take next can provide a sense of control and preparedness. Here’s a practical guide for individuals who have recently been diagnosed with Alzheimer’s.

Understanding Your Diagnosis

Learn About Alzheimer’s Disease
Begin by understanding the basics of Alzheimer’s, including its symptoms, progression, and the typical challenges it presents. Reliable sources such as the Alzheimer’s Association, medical journals, and your healthcare provider can offer valuable information.

Discuss Your Diagnosis in Detail
Have an in-depth discussion with your doctor about your specific diagnosis, including the stage of the disease, expected progression, and any particular concerns you should be aware of. Don’t hesitate to ask questions or request further clarification.

Establishing a Support System

Involve Family and Friends

    • Share your diagnosis with family and friends whom you trust and who might be part of your support network. They can offer emotional support and help with managing daily tasks and medical appointments.

Connect with Support Groups

    • Consider joining a support group for Alzheimer’s patients. Sharing your experiences and hearing others’ can be therapeutic and reduce feelings of isolation.

Planning for the Future

Legal and Financial Planning

    • Early planning for the future is crucial. Consult with legal and financial advisors to discuss setting up a power of attorney, creating a living will, and organizing your finances. This is critical to ensure that your wishes are respected as your condition progresses.

Healthcare Planning

    • Work with your healthcare team to outline a treatment plan. Discuss medications, therapies, and lifestyle changes that can help manage symptoms and potentially slow the disease’s progression.

Managing Daily Life

Adapt Your Living Environment

    • Modify your home to make it safer and more comfortable as your needs change. This might include installing safety rails, removing trip hazards, and ensuring good lighting throughout your home.

Establish Routines

    • Keeping a daily routine can help manage anxiety and confusion, which are common as Alzheimer’s progresses. Try to maintain regular times for activities like eating, sleeping, and socializing.

Keeping Physically and Mentally Active

Stay Physically Active

    • Regular physical activity can help maintain your health and wellbeing. Activities like walking, light yoga, and tai chi are beneficial and enjoyable.

Engage in Cognitive Activities

    • Keep your mind active with puzzles, reading, music, or other hobbies that you enjoy. These activities can provide a sense of achievement and enjoyment.

Seeking Regular Medical Care

Continuous Medical Follow-up

    • Regular check-ups with your healthcare provider are important to monitor your health and adjust treatments as necessary. Always keep a list of any changes in your symptoms, medication effects, or general health to discuss during appointments.

Embracing Emotional Well-being

Mindfulness and Relaxation

    • Practices such as meditation, breathing exercises, and relaxation techniques can help manage stress and improve your emotional resilience.


While an Alzheimer’s diagnosis is undoubtedly challenging, taking proactive steps to manage your condition can help maintain your quality of life. Remember, you are not alone—leveraging support from loved ones, healthcare professionals, and the Alzheimer’s community can provide comfort and practical assistance as you navigate this journey.

Alz in the Hispanic Community


The University of Miami Health System, through its Genomic Institute, is spearheading an initiative to increase Hispanic participation in Alzheimer’s research. The primary goal of this study is to identify genetic risks associated with the development of Alzheimer’s disease in the Hispanic-Latino population, which have not been extensively documented in medical literature.

Carolyn Banks’s story is not uncommon. As she noticed her older sister’s memory fading, her own brain health became a source of concern. This personal experience is reflective of a larger, more troubling trend observed in Miami-Dade County. The fear of memory loss, difficulty in recalling words, and names slipping away are signs that resonate with many in the community.

Despite Hispanics having the second highest risk of Alzheimer’s, they are only included in 1% of the studies conducted. Increasing their inclusion is not just about representation; it’s about improving access to medical resources and developing treatments specifically tailored for the community.

Jesús Carcases and his wife, who are caregivers for their 57-year-old daughter with Alzheimer’s, are participating in the study. They believe that involvement in such research is crucial for finding better outcomes. “This disease greatly affects families. We need to participate to seek better results,” says Carcases.

While there is currently no cure for Alzheimer’s, identifying specific human genome variants in this population can aid in creating preventive measures, especially for families at high risk of the disease. “Participating and helping this cause makes you feel good and happy,” adds Carcases.

For more information about Alzheimer’s studies or to participate, individuals can call 877-582-2788 or visit

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