Five Myths/Misnomers of Alzheimer’s disease and other related disorders
Let’s face it, Alzheimer’s disease and other types of dementia are complicated to understand. In fact, we don’t even completely understand the various types of dementias — where it comes from, why it progresses, how it progresses or how to treat it or prevent it. But, there are things we do know about Alzheimer’s disease and other related disorders. It is important to clarify these points to help increase awareness and reduce stigma. I have identified a few sayings I often hear and I would like to clarify:
1. “They are suffering from Alzheimer’s disease”
Yes, people do suffer from Alzheimer’s disease and related disorders; it can be painful in many ways. But we have to consider that many people are diagnosed in earlier stages and are still able to remain independent in various ways. Many people with a diagnosis of any dementia are able to laugh, enjoy their day, meet new people, spend time with their family, etc. By labeling these individuals as sufferers, we are not factoring in the life they are living. We have to consider how this statement feeds into the stigma. For that reason, we should consider saying, “living with” Alzheimer’s, not “suffering from.”
2. “Grandma has a touch of dementia” or “Grandpa has flow-blown Alzheimer’s”
These are two descriptive statements that people often use to share how affected an individual is by the disease. The problem with these descriptions is that we are not considering that when dementia is identified it is and will always be dementia from the start to the end. Consider someone who is pregnant. When the woman finds out she is pregnant, although she is in the first trimester, we don’t often hear people saying, “she has a touch of pregnancy.” With dementia, we know there are stages of progression. Some people in the early stages of the disease process can live more independently and are not as impaired. In the later stages, a person becomes more dependent on others to care for their daily needs. For this reason, we should consider saying, “Grandma is in the earlier stages of dementia” or “Grandpa is in the later stages of Alzheimer’s disease.”
3. “Thank god they don’t have Alzheimer’s, they have dementia”
When I hear this statement, I often spend some time explaining what the terms dementia and Alzheimer’s mean. Because Alzheimer’s disease is the most common and well known form of dementia, we often hear this. But it is important to understand that Alzheimer’s disease is one of many various forms, or types, of neurodegenerative diseases or dementias. To learn more about the different types of dementia, read the article “Discussions in Alzheimer’s care”
4. “She is 85 so it makes sense she is forgetful, right?”
Wrong, a person’s age does not determine if they have a neurodegenerative disease like Alzheimer’s. Yes, the older your age the higher your risk factor is to having a dementia. But, there are many people who are living in their 70s, 80s, and 90s without dementia. There are normal changes to the brain that come when we age, but not all older people will develop this disease. If someone is forgetful and it is impairing their functioning they should be evaluated by a doctor. If a doctor turns someone away and tells them, “You are getting older so memory loss is normal,” it may be time to go to a specialist who can evaluate the whole picture and find out what is causing the memory changes. Read more about early diagnosis of Alzheimer’s disease.
5. “Although my Dad has dementia, he is not wandering, so I am not worried about that…”
Wandering is a very scary part of memory loss and confusion caused by dementia. Persons in the earlier stages may have times where they become lost in familiar environment, but are still able to ask a stranger for help. But a person in the middle stages of a dementia may venture out into a cold winter night with the set belief that they need to get home, or get to work, or go to find their daughter. Such determination, mixed with confusion and lack of judgment, are a bad combination. We cannot predict when this type of behavior will surface, but the Alzheimer’s Association has stated that 60 percent of people with Alzheimer’s disease wander at one point in the disease.
So as best we can, we should work to protect the person by preventing this behavior. A common trigger for wandering behavior is increased confusion. Some people with Alzheimer’s or other dementia may not recognize their own home, or the people taking care of them. This may make them feel unsafe and the person may desire a place of comfort. You may see how this level of confusion can cause this person to seek out a place of comfort and leave that place they do not feel safe. The number one way to prevent wandering is supervision. There are also devices and alarms to help prevent. And there are products to help find a person. Keep in mind, although your Dad may not have wandered, it doesn’t mean he is not a risk.
Clearing the Water
I hope I may have helped to clear the water on what you may hear when people speak about Alzheimer’s disease and related dementia. It is so important to take the opportunity to educate ourselves, our families, our clients and the community about these types of brain diseases as they are so complicated.
*This article was edited by Heidi Enriquez
This post was written by:
Jaimie Robinson - who has written 31 posts on Chicago Bridge.
Jaimie is a Licensed Clinical Social Worker in Chicago, IL and received her Master’s in Social Work from Loyola University Chicago. After working at the Alzheimer's Association, National Office in Family Programs, Jaimie now works as the Resource Navigator at the Cognitive Neurology and Alzheimer's Disease Center of Northwestern University. As the Resource Navigator, Jaimie works with patients and families living with a diagnosis of dementia in the Neurobehavior and Memory Clinic. Jaimie is a featured writer of the Chicago Bridge blog and is a member of the board of directors for Chicago's Society of Social Work Leadership in Health Care.
Your myths/misnomers are right on the money! As clinicians in the field of aging, we have to be so careful with words we use when speaking with our clients, families, and the public. Whether we are offering support, education, or doing public speaking, we need to pay particular attention to our speech as it affects how people understand issues of aging. Thanks for this article!
So many excellent points ~ a real keeper!
Thanks Alex and Nan!
Yes, I hope this article can give us some insights into how we communicate to each other and our clients about aging and dementia.
If you know any other AD myths/misnomers, please share!
The points you make on dementia are very useful! I used this website as a reference in my support group I lead for employees at my job.
Hi Amalia,
Great to hear that you found this article useful. This website is so informative and I hope that it is helpful for the support group you lead.
Thanks,
Jaimie
Jaimie- that is a great article, I would love to repost it on my blog. I have heard people say those 5 quotes more times than I can count!
Hello Lisa,
Thank you for the feedback- I am so glad to hear you can relate! Please feel free to post this on your blog. But please make sure to link back to the original article on this website as well as making sure that your readers know how to get in touch with me if they would like by email Jaimie.Marie.Robinson@gmail.com. Thanks again!
Jaimie
HI Lisa, About re-post – if you do not mind posting a part of the article and then linking back to this website where the original is, that is known to be the best way to re-blog. Thanks! Jaimie
Jaimie,
This is a wonderful article!! Very well written, it’s written so not only those of us trained in this line of work can use it but anyone can connect with the way you write! Thank you for meeting everyone where they are, that’s not easy to do, very impressive! Do you have an e-mail list of those who want to receive your articles? If so, please ad me: sandrazapchenk@yahoo.com
Thanks again and GREAT JOB!
Sandy
Thanks Sandy.
Thanks for your very wonderful comments and compliments. I am glad to hear that this article is able to be there for any one interested to learn more about Alzheimer’s disease or other dementias.
To get updates from my articles and others, you can go to Facebook and join The Chicago Bridge’s page and get updates that way. Visit http://www.facebook.com/pages/The-Chicago-Bridge-Emerging-in-Aging/114239065285190. There we post the latest articles from this blog. Also, you can become a member of the Chicago Bridge which includes joining a list serv. On that list serv there are emails sent from emerging professionals in the field of aging about topics of interest related to the field as well as when there is a new blog post. Click on the membership page to find out more information http://www.thechicagobridge.org/bridge-membership/
Thanks
Jaimie
This is awesome! I haven’t heard these terms yet, but I know that when I do, I will be prepared with some tactful responses!
I have to confess that I felt really bad watching a soap opera where part of a dialogue was: “do you think I suffer Alzheimer or what”. I found that dialogue really offensive towards people with AD. Also, I found it is common to associate memory loss with Alzheimer and make fun of it in a disrespectful way just as in the soap opera.
[...] The increase in public awareness initiatives by organizations like the Alzheimer’s Association or news media outlets like Larry King can contribute to the public understanding of the disease. Although this understanding may be only surface level, more than ever people are talking about Alzheimer’s disease. However, misinformation surrounding the disease and the lack of treatment or prevention will increasethe fear… [...]
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