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.
- Difficulty performing familiar tasks. A person living with dementia may have trouble completing a task that has been familiar to them all their lives, such as preparing a meal, remembering where the toilet is in the house and remembering how to use it, turning the television on or off, chewing their food, recalling how to swallow their medication, taking a bath, washing their face, or brushing their teeth. These simple daily tasks that we do every day become difficult for someone dealing with dementia.
- Problems with language. Sometimes we all can have trouble finding the right word to express what we want to say. A person living with dementia may forget simple words or they may use or make up words that others may not understand. Often, it’s challenging for them to make a complete sentence that makes any sense to the listener. When interacting with them, one can see the struggle they are having trying to communicate. I have found that it’s best to agree with them, nod your head, and smile during your interaction with them.
- Disorientation to time and place. Forgetting the day of the week, the month, or even the year are warning signs. We all tend to forget the day of the week or will go into a certain room but forget why until it comes back to us 15 minutes later. People living with dementia can become lost in their homes or on their own streets, not knowing how they got there or how to get home. Often, I have met people who are driving and can’t remember how to get back home. On those occasions, I have offered to help them or when I was driving, asked them to follow me to their address. They were always grateful, but they really shouldn’t be driving.
- Impaired judgment. Often people may make questionable decisions such as refusing to attend a medical appointment. Often, people living with dementia may experience changes in judgment or decision-making, such as not recognizing a medical issue that needs attention, walking around the house or going outside naked. For their safety, it would be highly recommended to change the locks on doors so that keys are needed to exit the house or apartment. It also helps to have signs in the house, such as, the word Toilet on the bathroom door — that shows a picture of a toilet. Having a clean and organized home helps a person with dementia. If a home is cluttered with junk, you may consider decluttering or clearing out the space so there are no accidents.
- Problems with abstract thinking. Many people with dementia have problems understanding what numbers and symbols mean. It’s not unusual that there may be some difficulty using a calculator, a mobile device, a computer, paying bills, turning on the washing machine, dishwasher, or balancing a check book. Many people suffering from dementia were once the primary person in charge of household finances, such as paying bills on time and maintaining accurate records.
- Misplacing or moving things. We all are guilty of misplacing things that we may have placed in a safe and secure place. We can temporarily lose our car keys, a wallet, or our favorite watch or ring. A person living with dementia may put things in inappropriate places or pick up anything that a housemate may leave on a table or anywhere. For example, car keys in the freezer, a diamond ring in the sugar bowl, or their spouse’s new mobile phone in the laundry chute. One day while with my sister, my glasses disappeared. I searched everywhere without any luck. When I was complaining to someone that I had lost my favorite pair of glasses and my sister kept saying the word ‘trash’ repeatedly while she was watching a game show. Each time she said the word, she became louder and louder. Finally, it caught my attention, and I ran to the trash can in the kitchen. Without much digging, I found my glasses in its case in the garbage. I am still amazed that she understood what I was searching for every day and night. The experience taught me to be always alert and not leave things laying around. Simple things would disappear, such as pens, caps, letters, medicine, remote controls, computer mouses, and of course, mobile phones.
- Changes in mood and behaviour. You must agree, we can feel sad or moody every day. A person living with dementia can demonstrate major mood swings from calmness to screams of anger, often for no logical reason.
- Changes in personality. Each of our personalities can change in subtle ways over time. In many cases, a person living with dementia may experience more striking personality changes and can become confused, suspicious, or withdrawn. They may enjoy one of their favorite meals today but refuse to eat it tomorrow. Often this can be difficult for the caregivers. Some people with dementia can become violent or put up a fight if there is something they don’t want to do, such as taking a bath, being shaved, or having their hair combed.
- Loss of initiative. It’s normal to get bored or tire of doing housework, writing the same management reports that no one reads, or feeling obligated to attend social engagements, but we often regain the initiative or drive to continue. A person living with dementia may become passive and disinterested, requiring a push to get involved again.
- Loss of Smell.
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.