Caregiver and Family

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Category: Caregiver and Family

This category provides Educational Resources for Caregivers and Family members of Alzheimer’s Disease patients.

Brain Donations: Attitudes And Perceptions 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
    research.
  • 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.

The DAWN Study’s Guide to the Early Signs and Symptoms of Alzheimer’s and Dementia

As a leading research organization dedicated to the study of Alzheimer’s disease and dementia, we understand the profound impact that early detection can have on management and treatment outcomes. Recognizing the early signs and symptoms is crucial for initiating timely interventions and planning for the future. Based on our extensive research, here are the key early indicators that may suggest the onset of Alzheimer’s or dementia.

Memory Loss That Disrupts Daily Life
A significant early symptom of Alzheimer’s is memory loss that affects daily functioning. This goes beyond misplacing keys to forgetting significant dates and repeatedly asking for the same information, requiring more frequent use of memory aids.

Challenges in Planning or Problem Solving
Individuals may start to experience difficulties with tasks that require planning or dealing with numbers. This can include challenges in following recipes, managing monthly bills, or solving problems that were previously handled with ease.

Difficulty Completing Familiar Tasks
There may be a noticeable decline in the ability to perform familiar tasks. This could manifest as difficulties in navigating to known locations, managing workplace tasks, or recalling the rules of familiar games.

Confusion With Time or Place
Patients may lose track of dates, the time of year, or the passage of time, and may become confused about where they are or why they are there. This confusion with time or place is a common sign of cognitive impairment.

Visual and Spatial Difficulties
Visual and spatial difficulties are also indicative of Alzheimer’s, including problems with reading, judging distance, and differentiating color or contrast, which may affect an individual’s ability to drive safely.

Problems With Words in Speaking or Writing
Communication issues often arise, with individuals struggling to follow or join conversations, finding the right words, or repeating themselves. This can lead to withdrawal from social interactions.

Misplacing Things
An increase in misplacing personal items and an inability to retrace steps to locate them can be an early sign of cognitive decline. Such incidents may also lead to accusations of theft and increased mistrust among familiar faces.

Decreased Judgment
Changes in judgment or decision-making can manifest, seen in poor financial decisions or a neglect of personal grooming and hygiene, impacting daily life quality.

Withdrawal From Social Activities
Individuals might withdraw from work, social activities, or hobbies that were once pleasurable, often due to their recognition of cognitive challenges.

Changes in Mood and Personality
The mood and personality of individuals can change dramatically, including the development of depression, irritability, or anxiety, which can drastically alter their usual behavior.

The Importance of Early Detection
Our organization emphasizes the importance of early detection and diagnosis. By recognizing these symptoms early, individuals can access treatments that may delay the progression of the disease and significantly improve quality of life. Moreover, early diagnosis enables better planning and support for affected individuals and their families, ensuring they receive the necessary care and resources. If you or someone you know is exhibiting these signs, we recommend consulting a healthcare professional for a thorough evaluation. Early intervention is critical in managing Alzheimer’s and dementia effectively and can lead to better outcomes for all involved.

 

 

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