Dementia

Dementia was a term that I never knew very much about such as the causes and the warning signs. My friends and I would often tease each other if one of us had forgotten to pick up a bottle of wine for our movie night or couldn’t locate our eyeglasses that were always on top of their heads. We would say, “Oh no, Kevin has dementia,” and we would all laugh together.

Thanks to the push from Dr. Marcy Adelman, Co-founder of Openhouse in San Francisco and a fearless LGBTQI Longevity Consultant and Policy Advisor, who convinced me to join the volunteer team of the Alzheimer’s Association based in Oakland, CA. The goal of our team is to educate those in the LGBTQI communities and educate communities of color about the ABCs of dementia and Alzheimer’s disease. The experience has been an amazing eye-opener that has enabled me to share my knowledge with others. I discovered that most communities of color were unaware of the warning signs or how to help family members that may be showing signs of early dementia.

Every summer of my youth was spent in Louisiana with my many aunts, uncles, and cousins. My family was a large one with many personalities all over the board. I grew up with 9 aunts and 3 uncles, all talking at the same time, laughing, and teasing us kids. The memories of those summers and other school holidays still make me smile when I savour the adventures. There was one older aunt that we children would watch because she became odd as she aged. The adult relatives would say, she is just a bit loopy, pay her no mind. I can remember her having conversations that never made any sense. Often, she would get dressed like she was going to a gala with her face all made up with lipstick everywhere except on her lips. At the time we thought she was doing things just to make us children laugh. Today, I wished I would have been older and wiser to try to help my Aunt LaLa as she was called by her siblings. Today my aunt would be diagnosed with dementia or Alzheimer’s disease if she was alive.

So, when did this all begin? Well, I started doing a bit of research to help me better understand when it was first discovered. The first description of Alzheimer’s disease was in 1906. Dementia’s journey of discovery began when Dr. Alois Alzheimer examined the brain of a lady called Auguste Deter, who died after experiencing symptoms that we would now recognise as dementia. And the research goes even further back. In the 19th century, dementia was a common diagnosis for admission to a mental or lunatic asylum. Dementia then was used to mean cognitively impaired, or mad, and the term wasn’t associated with old age. A common term for what we now call vascular dementia was ‘brain congestion’.

Dementia and/or Alzheimer’s disease is something that all of us will have to deal with on some level. Regardless of our age, gender, or race, someone that we love will be diagnosed with dementia or even ourselves. In my public relations and marketing work, the topic often enters conversations with clients, especially if the program is about health. I am committed to sharing information that may help others to be able to identify issues with loved ones. For me, it came knocking on my door when my older sister started showing many of the signs of dementia. We noticed the changes but brushed them off since everything else seemed normal. Besides, we were all too busy with our working lives and would accept the answer from my sister, “Oh, I am okay, don’t worry,” as the answer we wanted to hear as we went back to looking at our mobile devices for the latest news or to check work emails and messages. Today, my sister has no idea who I am. After visiting her for 2 months, the pain of watching her struggle to try to make a sentence or to make sense of what I was saying or who I am was painful to watch. Can you imagine if it was your mother, father, wife, husband, or best friend? I was always pleased when I would do something to make her laugh or get up and dance with me since she is the person who taught me many of my moves. Funnily enough, she still had those great moves, especially with the shoulders rotating back and forth to the beat of the music.

Is there a difference between dementia and Alzheimer’s disease? While dementia is a general term, Alzheimer’s disease is a specific brain disease. It is marked by symptoms of dementia that gradually get worse over time. Alzheimer’s disease first affects the part of the brain associated with learning, so early symptoms often include changes in memory, thinking, and reasoning skills.

So, what are the warning signs of dementia?

  • Memory loss that affects day-to-day abilities. It’s normal to occasionally forget appointments, names of colleagues, or a friend’s phone number only to remember them a short while later. However, someone living with dementia may forget things more often or may have trouble remembering information that was recently learned. Often, they don’t remember their name, how to tell time, how to write their name, or to read anything.

According to the National Institute on Aging at the National Institute of Health, the loss of smell is linked to Alzheimer’s cognitive impairment and biomarkers. According to their research, the decline in sense of smell is connected to a faster build-up of Alzheimer’s disease-related pathology seen in brain scans, according to new research focused on older adults who live outside of nursing homes. The findings provide additional evidence that loss of smell (known as anosmia) is a key early sign of Alzheimer’s-related cognitive impairment and the accumulation of associated harmful proteins, such as amyloid-beta and tau. The research, led by NIA scientists, was published in the Journal of Alzheimer’s Disease.

Lessons in life have taught me to respect the role of true caregivers. It’s not an easy task taking care of someone that you love that may not remember who you are. It takes a lot of strength and patience to stay strong and focused on making sure the person with dementia is being treated well and with the greatest respect. It’s important to know that the person we may be looking at is no longer the person that we want them to be, nor can they be that person ever again. It’s key to try making them as comfortable as possible. Fighting and arguing can only make things worse. Also remember to seek help when needed, such as hiring a caregiver to help, a physical therapist to help the patient to exercise and walk around, and someone to prepare healthy meals. I also found that playing their favorite music helps to get them moving and trying to sing the words to the song. Sharing photographs of family members may also stimulate their minds. Some days people with dementia can be very clear in their communication, but it may only last for a few seconds or minutes. Be grateful for every moment that you may share.

For more information about dementia or Alzheimer’s Disease, contact your local Alzheimer’s Association or organizations that provide dementia support. Also, get involved in their activities or webinars in order to gain more information that may be helpful.

--

--

Mikael Wagner is a communications project manager with focus on health promotion, public relations , marketing and focus group facilitation.

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store
Mikael Wagner

Mikael Wagner is a communications project manager with focus on health promotion, public relations , marketing and focus group facilitation.