World Alzheimer’s Day 2018 – Eliminating the Stigma

Today is World Alzheimer’s Day a day that may only be important to someone who is caring/cared for a loved one or knows someone with the disease, but it’s a day dedicated to raising awareness that nearly 50 million people worldwide are living with this disease and to challenge the stigma surrounding it.

I’ve had a brief writer’s block a lot due to life stuff, but I’m here and what better day to inject my words and address the stigma surrounding Alzheimer’s and dementia related diseases as well as to bring awareness to people of color on the high risk that we face.

There has been a shift within the past few years towards removing the stigma around mental illness and though Alzheimer’s falls under its own umbrella, those in this fight to end Alz can attest that it’s even harder to get people and businesses invested in, and talking about a disease that currently has no cure. But in rising awareness this is not a sprint it’s a marathon.

What keeps the stigma going?

Embarrassment, fear, culture, not speaking on illnesses, but it’s those fears that keep us close and stuck.

I’ve personally never had a fear of Alzheimer’s perhaps because I faced it with my maternal grandmother, but early on helping my mom, I definitely had moments of embarrassment where all I could do was to stand in that moment and react as best as I could. As I grew in my role as her caregiver, the embarrassment subsided, I had no time for it. I had to use my brain, my mind for the both of us and help her as she was experiencing changes that she had no control over.

As a caregiver you know that things are going to happen; I had to let them happen, I had to be as prepared as best I could be and when they (changes, words said, etc.) were going to happen, I knew that how I handled those changes was going to be key an most important.

I felt sorry for my mom and that empathy turned to my figuring out how to better help her and other caregivers. To begin to remove the stigma it began with talking and sharing and writing and becoming a voice for the voiceless.

As a woman of color, specifically a Black woman where our community doesn’t speak about health crisis as much as we should, raising awareness became increasingly prevalent.  Too often we sugarcoat things, or have feelings that something will subside; now bring in Alzheimer’s disease; a disease with no cure that changes the brain. Just because we don’t speak about something doesn’t mean it’s not going to show up in our lives and it also doesn’t mean that you or a loved one will get it, but we must begin to have conversations.

By staying silent about our medical history with love ones it only hurts ourselves. For instance, there is a link between hypertension and diabetes and the risk of Alzheimer’s disease. Blacks and Latinos are two times at risk for developing Alzheimer’s. And while genetic factors aren’t known to explain a higher-risk, conditions such as high blood pressure, diabetes do. Even socio-economic disadvantages (income affects healthcare) also plays a role. This awareness on how physical and heart health is linked to brain health shows that we have to support one another and encourage each another to get support services and available treatment when needed.

How can you spread awareness and help to stop the stigma?

  • Use your voice and have conversations.

 

  • Use appropriate and respectful phrases.

 

  • Correct misinformation regarding Alzheimer’s disease.

 

  • Help someone you know who may be a caregiver to a loved one with Alzheimer’s disease, it’ll give you a first-hand view.

 

  • Encourage the individual to pursue hobbies, perhaps offer a list of activities they can do at home.

 

  • Consult a physician.

 

  • Attend an event or fundraiser.

On this day even if your life or a loved one’s life hasn’t been touched by Alzheimer’s perhaps you can say a prayer for the person living with AD, for a caregiver or former caregiver or contact your local government office to ask that resources are increased for research and medical care, and to keep everybody lifted whose life has been affected by Alz.

For more information on Alzheimer’s and Women and Alzheimer’s here are a few of the many organizations that I support:

Women’s Alzheimer’s Movement

Alzheimer’s Association

Us Against Alzheimer’s 

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Bill Gates Announces $30 Million Fund for Alzheimer’s Diagnostic Tools

There is nothing for me to add to this story, the title alone speaks for itself. Bill Gates is becoming our number #1 champion against Alzheimer’s. On July 17th, he announced that he and Estée Lauder Cosmetics chairman emeritus Leonard Lauder and other philanthropists, including the Dolby family and the Charles and Helen Schwab Foundation, will award $30 million over three years to the Diagnostics Accelerator, a venture philanthropy vehicle.

Gates and Lauder provided seed money for the diagnostics collaboration through the Alzheimer’s Drug Discovery Foundation (ADDF), which was founded by Lauder. The Alzheimer’s Drug Discovery Foundation (ADDF) aims to accelerate bold new ideas for earlier and better diagnosis of the disease.

Why diagnosing Alzheimer’s today is so difficult—and how we can do better

When I announced that I was investing in Alzheimer’s research for the first time last fall, I thought I knew what to expect. I knew I would get to engage more deeply with the brilliant scientists and advocates working to stop Alzheimer’s—and I haven’t been disappointed. The things I’ve seen over the last seven months make me more hopeful than ever.

What I didn’t see coming was the amazing response I got from the Alzheimer’s community at large. Because my family didn’t talk publicly about my dad’s diagnosis before the announcement, I had yet to experience how remarkable the support community is. So many of you have shared your personal experiences with me, both in person and online (including here on TGN). It helps to hear from others who are going through the same thing.

Alzheimer’s research is a frontier where we can dramatically improve human life—both the lives of people who have the disease and their loved ones. I’m optimistic that we can substantially alter the course of Alzheimer’s if we make progress in several key areas. One of the biggest things we could do right now is develop a reliable, affordable, and accessible diagnostic.

Continue reading the full story here on Gatesnotes.

Becoming Certified in Mental Health

Names and dates have been crossed out for privacy purposes

Three weeks ago I took another step forward in my advocacy by taking a mental health training course offered through a local NYC chapter of Delta Sigma Theta Sorority, Inc.; which I am proud to say is my sorority. I am now certified to recognize and respond to people experiencing mental health distress and substance misuse. And though I’m an Alzheimer’s advocate,it is still a branch, connected to the tree of mental health, and I want to do my part to become as well-rounded and knowledgeable as I can, to be able to assist others.

This training was offered by the City of New York as part of an initiative called “Sisters Thrive” created by NYC’s First lady Chirlane McCray. Within the first year, Sisters Thrive hopes to amplify the national dialogue about mental health awareness in the black Community.

First Lady McCray is taking on mental health wellness in collaboration with historically black women-led organizations. Her goal is to train 10,000 African-Americans in what she calls “Mental Health First Aid” (MHFA), a course that teaches people how to identify and respond to signs of mental illnesses and substance-use disorders.

Her passion for mental health came from seeing mental illness and substance abuse challenges in her family and these abuses in the Black community. She choose to work with leading women-led Black organizations because in her words, “These women are very involved in their communities and champions of civil rights. They are caretakers. They are fighters….They help create leaders and back our leaders. These are women who are activists in the most serious sense of the word so if we train them, not only will they be able to take care of themselves and their families, they are going to do so much for our communities and so much for our city and world.”

The organizations she choose to partner with are Alpha Kappa Alpha Sorority, Inc., Delta Sigma Theta Sorority, Inc., Zeta Phi Beta Sorority, Inc., Sigma Gamma Rho Sorority, Inc., Eastern Area of The Links, Inc., and Jack and Jill of America, Inc..

I’m grateful to be a part of a movement that is a about mental health awareness and about seeking change and advancements in care. For more information on Mental Health First Aid trainings go to ThriveNYC.

If you’re struggling with depression, drugs or alcohol misuse or anxiety you can contact NYCWell,  NYC’s free, confidential support, crisis intervention, and information and referral service for anyone seeking help for mental health and/or substance misuse concerns, available 24 hours a day, 7 days a week, 365 days a year.

June is Alzheimer’s & Brain Awareness Month

Alzheimer’s Disease (AD) is becoming increasingly familiar because of the growing number of people living with it and other dementias. There are 5.7 million Americans living with Alzheimer’s disease and without effective treatment, prevention or cure, the number of people with Alzheimer’s disease is expected to increase to 13. 5 by the year 2025.

The month of June, has been proclaimed as Alzheimer’s & Brain Awareness Month, where national awareness is given to the crisis of Alzheimer’s, the available resources, the family’s that are impacted by it, and how you can get involved to support the cause.

Unfamiliar with the disease? Here’s an overview on Alzheimer’s and Dementia.

*Dementia is caused from damage to the brain cells and is a general term for a decline in mental ability, memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities. Alzheimer’s and Vascular Dementia (i.e. resulting from a stroke) are too common forms of Dementia. There are many other conditions that can cause symptoms of dementia,  such as thyroid problems and vitamin deficiencies and while symptoms start out slowly, they gradually get worse.

Types of Dementia:

  • Alzheimer’s Disease (see below)
  • Vascular Dementia – Occurs because of brain injuries such as microscopic bleeding and blood vessel blockage.
  • Dementia with Lewy Bodies – Lewy bodies are abnormal aggregations (or clumps) of the protein alpha-synuclein. When they develop in a part of the brain called the cortex, dementia can result.
  • Mixed Dementia – Characterized by the hallmark abnormalities of Alzheimer’s and another type of dementia
  • Parkinson’s – Degeneration of the nerve cells. Problems with movement are a common symptom early in the disease.
  • Frontotemporal lobar degeneration – People with bvFTD generally develop symptoms at a younger age (at about age 60) and survive for fewer years than those with Alzheimer’s.
  • Creutzfeldt-Jakob disease – Believed to be caused by consumption of products from cattle affected by mad cow disease.
  • Normal pressure hydrocephalus – Caused by the buildup of fluid in the brain.

*Alzheimer’s – The most common form of Dementia, that’s not considered an illness of old age, but is a progressive disease that causes memory loss, and problems with thinking behavior.

Symptoms of Alzheimer’s is remembering newly learned information and as it advances it leads to increasingly severe symptoms, such as disorientation, deepening confusion about events, time and place; mood and behavior changes; unfounded suspicions about family, friends and caregivers; and difficulty speaking, swallowing and walking.

7 Stages of Alzheimer’s:

  1. No impairment (normal function)
  2. Very mild cognitive decline (may be normal age-related changes or earliest signs of Alzheimer’s disease)
  3. Mild cognitive decline
  4. Moderate cognitive decline
  5. Moderately severe cognitive decline. Gaps in memory and thinking are noticeable, and individuals begin to need help with day-to-day activities.
  6. Severe cognitive decline. Memory continues to worsen, personality changes may take place, individuals need extensive help with daily activities and they lose awareness of recent experiences and their surrounding.
  7. Very severe cognitive decline. Individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement.

* Information from the Alzheimer’s Association.