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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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.

The D Word

Since November I’ve been dealing with bouts of depression. Yes, that’s the D word people often do not want to speak on because the stigma of it all. I don’t want to speak on it because the ‘ole, what will people think comes into play, as if it screams something is wrong with me. I deal with it in waves, but most recently as a freak of an injury started getting worse, so too was my depression.

I had a boot on my foot by December and it felt like a boot on my life. The more pain I had, and less that I could do, the more I let it affect me. Then add in the holidays and regular life stressors, I was a big ‘ole bag of emotions. When depression hits, it affects what I need to do for myself and what I like to do, such as my blogging. I start procrastinating, I often feel tired and I’m searching for words that won’t come. Then I feel bad because I haven’t posted in a long time, that I’m not doing more in my advocacy and BOOM, I’m the hamster on the wheel.

But one day I needed to remind myself of why I started this blog. It wasn’t for me to be perfect in how I run it, but to inform, to provide resources, and most importantly to share my journey. Warts and all, whether as a caregiver or not, depression has been a thread through it all.

When I was caring for my mom, I started seeing a therapist. I knew I needed to speak to someone other than my friends, and my dog. I needed  coping skills, but most importantly I needed to talk and release. I didn’t think I was depressed. My therapist said I was, I disagreed, she was right. Depression doesn’t always manifest in being sad or down. Even though I wasn’t those things, being mom’s caregiver was all consuming, and in moving forward towards those things that I could move forward to, I didn’t. I was stuck and that feeling of being stuck is a form of depression.

I still deal with the loss of my mom, my Polo, my dad (even though it’s been 22 years), and the loss of the life I had. I allowed myself to fall into the gloom of feeling less than because my life isn’t what I wish it to be, and it’s taken a toll. Most days moving from the fog appears be a bigger challenge that I care to tackle. I’m uncomfortable where I’m at and yet challenged to get unstuck….oh depression. But they say, “your thoughts become things” and for change to happen, I have to work on how I think about things.

Now I won’t dismiss anti-depressants because I’ve been on them too, they work and I’m considering them again. I’m addressing this because there are some people who are of the “no drugs for me” policy, but I say one shouldn’t judge and you have to do what gets you feeling good and functional.

A big difference for me these past years is that I can feel the wave of depression coming on. I can’t always stop it, but I acknowledge it, and ride it through and let the emotional chips fall where they may.

Thankfully, as I write this today, I am in a lighter place. Pains have started easing in one area, and though I’m still dealing with other health issues, I’m working to get out of my feels and into a it’s now or never mode. I also intend on getting another therapist. It’s been years since I’ve gone regularly and it can only help as I move forward. I recommend therapy for anyone whether you’re going through something or not. It helps to have another opinion, another outlet and/or voice of reasoning. It’s important to take any steps you can for optimal mental and physical wellness.

I wish you well on your mental health and wealth journey.

 

 

 

If you have questions about mental health issues including:

  • Symptoms of mental health conditions
  • Treatment options
  • Local support groups and services
  • Education programs
  • Helping family members get treatment
  • Programs to help find jobs
  • Legal issues (the NAMI Legal Resource Service can connect individuals with attorneys in their area but does not have the resources to provide individual representation)

Contact the National Alliance on Mental Illness (NAMI) who  can be reached Monday through Friday, 10 am–6 pm, ET; 1-800-950-NAMI (6264) or info@nami.org.

or

National Suicide Prevention Hotline (open 24/7): 1-800-273-8255.

Samaritans 24 Hour Crisis Hotline (open 24/7): 212-673-3000

United Way Helpline (which can help you find a therapist, healthcare, or basic necessities): 800-233-4357

National Alzheimer’s Disease Awareness & Family Caregiver Month

Another November is here and another November where advocates and families of loved ones with Alzheimer’s or those serving as Caregivers to someone with Alz is in the continues trenches for a cure. We’re always at work, but November, our dedicated month is time to shine brighter, walk further, and  advocate harder.

My day one was spent doing social media outreach, networking and letting people on those outlets to look out, because I will be bombarding them with information. But not bombarding you all mindlessly, but to hopefully to provide information that will be enlightening, empowering, and of course mixed in with some fun.

I also listened to most of the Women’s Alzheimer’s Movement’s live stream today ( I was at work so I had to listen when I could, LOL). Great panelists, great information, some I was able to jot down quickly and for what I missed, I will go back and get. If you missed it I caught it on Maria Shriver’s Facebook page.

It’s only day one, and I know how I can get, I want to keep going and going as ideas and to-do’s pop into my head. I’m in full-on information overload, which I need to sort out to bring you the best information that I can. And in the meantime, I wish you all a healthful brain day and month.