How to Counter the Stigma Associated With Dementia
Creating awareness about Alzheimer’s disease is both necessary and good. Toward that goal, designating the month of September as Alzheimer Awareness Month, and Sept. 21 as World Alzheimer’s Day, is useful. But for a person living with the most common form of dementia, or for their family members and caregivers, every day is Alzheimer’s Day.
Those days translate into weeks, months, and years of navigating the mind-altering disease and caring for those we love the best we can.
Alzheimer’s Disease International (ADI) notes that its global awareness campaign for Alzheimer Awareness Month aims “to challenge the stigma that persists around dementia.” This year’s campaign is titled “Know Dementia, Know Alzheimer’s.” This is important because there is much misinformation about dementia and those diagnosed with Alzheimer’s disease, and misinformation fuels stigma.
Early detection is the greatest defense against Alzheimer’s disease, but convincing an otherwise healthy person exhibiting signs that point to cognitive issues to get tested can be a challenge. We’re fearful of getting tested because we’re afraid that the diagnosis is dementia.
We fear dementia for apparent reasons, but the stigma attached to the disease is also frightening. How will our friends and family respond to the diagnosis? Will they treat me differently? Sadly, the answer is probably yes, unless you take the bull by the horns and share your diagnosis with trusted friends and family members.
Telling people, on your own terms, about your diagnosis is difficult. Still, it is an opportunity to educate your family and friends about the disease and how you expect to move forward in the friendship and family dynamic.
Beat down stigma
Telling the truth is the only method for blowing away the stench that stigma attaches to dementia. Unfortunately, it’s not just friends and family who require education about Alzheimer’s disease and other forms of dementia. Clinicians are often at fault for perpetuating stigma, and this can fuel a failure to diagnose.
ADI estimates that globally, 75% of people with dementia have gone undiagnosed. Unfortunately, one in three clinicians fail their patients because they don’t believe anything can be done about dementia, according to ADI’s World Alzheimer’s Report 2021. Who wants to hear that from their doctor? No one!
Don’t allow yourself or a loved one to be duped by misinformation triggered by stigma. Early diagnosis is crucial and would make a difference to the estimated 41 million undiagnosed people worldwide. If your clinician fails to inform you or a loved one about positive steps to prolong a happy lifestyle while living with dementia, then consider finding another doctor.
If you don’t know where to start, contact the local chapter of the Alzheimer’s Association. The Dementia Map, a global resource directory and event calendar, also is an invaluable resource.
What to bring to your doctor’s attention
Visiting your family doctor is the first step toward early diagnosis. If you or a loved one have concerns about cognitive issues that affect mood or interfere with your lifestyle, then visit a primary care doctor for an initial assessment. Following a dementia diagnosis, seek help from a specialist, specifically, a geriatrician or a neurologist.
The following tips can assist you in starting a conversation about dementia with your doctor:
- A friend or family member is more valuable than you can imagine for emotional support and to help fill in the blanks. Before your appointment, discuss with your loved one what you want to bring up during your conversation with the physician. Having someone with you is a smart move for folks without cognitive issues, too. Two heads are always better than one.
- Speak frankly to the doctor regarding memory issues that are concerning. Bring up all behavior changes and when you first noticed them. Be as truthful and accurate as possible. Don’t be insulted if your friend reminds you of instances. They’re present to help you and can assist with describing a steep, quick, or slow decline and when they became apparent.
- If the cognitive assessment doctor is your primary physician, they will have your medical and family history on record; however, inform them of changes you may have experienced since the last visit.
The initial assessment is the first step in an approach that will include functional and neuropsychiatric symptom assessment. A thorough examination and assessment of these, along with the initial physical assessment and laboratory tests, determine the major areas of concern that affect daily life and everyday needs.
Familial caregivers and persons diagnosed with Alzheimer’s disease should call the shots about when and how a dementia diagnosis is revealed. Taking control and owning the diagnosis and the next steps, and educating others helps to quell the stigma associated with dementia and Alzheimer’s disease.
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Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.
About the Author
michael zuendel
Thank you Ray for your article on Stigma, and especially on early diagnosis. I havebeen diagnosed with MCI and now publicly advocate for awareness and fighting stigma. I feel very strongly that the word dementia is a HUGE contributor to the stigma. If I have dementia that means I am demented. "Demented" means loss of mind, and it's synonyms are insane, disturbed, mad, sick , unbalanced. It is very interesting that over a decade ago the diagnosis of Mental Retardation, and Dementia were dropped at the same time from the DMS manual. Mental Retardation was replaced with Intellectual Disability and Developmental Delay and the usage of Mental Retardation and the stigma it imposed, , thankfully, is no longer acceptable. Unfortunately the term Neurocognitive Disorder, which was instituted as the correct usage and replaced dementia the DMS at the exact time of the change of Mental Retardation is not in common use. The stigma will prevail ,I feel, as long as the horrible, dreaded, and incorrect word dementia is continued. I have MCI due to Alzheimers disease, I am not demented.
Thank you very much MTZ
Ray Burow
Hi Michael,
Thank you so much for taking the time to comment, especially as you deal with Mild Cognitive Impairment. Sharing your personal experience is helpful to many readers, I am sure, and it's helpful to me.
I agree with you. I don't like the word "dementia" for the very reasons you've mentioned! Sadly, we're caught in a Catch 22 situation. Aside from the science and medical fields, the term "Neurocognitive Disorder" isn't well known, so we fall back on the word "dementia" to create awareness about the disease. I wish the term had caught on when it was first introduced. Unfortunately, re-education of the term has to take second place to education about Alzheimer's disease and other neurocognitive disorders since it seems we're just gaining financial momentum for research, education, etc. However, your point is well taken, and going forward, I will attempt to infuse the term "neurocognitive disorder" in future articles.
I wish you the very best!
Ray
Mats Wolff
I want to bring my elderly mother to a memory care center since she is slowly losing her memory. I like when you said that early detection is the greatest defense against Alzheimer’s disease. Thanks for the information on dementia and I hope that I can find a good center for my mother soon. http://sunsetestatesor.com/dementia-care
Ray Burow
Hi Mats!
Thank you for your comment. I am encouraged by the word "slowly" regarding your mother's memory loss. It sounds like you're on the right track in getting her the help she needs to slow the progression of dementia if it's present, hopefully. Yes, diagnosis is the first step. I am unfamiliar with the organization you linked in your comment. However, I am sure you've done extensive research, and if you need further assistance/confirmation, the local chapter of the Alzheimer's Association should be able to assist you. Also, the Dementia Map, a global tool for finding local resources, is beneficial (http://alzheimersnewstoday.com/2020/12/21/dementia-map-resource-caregivers-professionals).
I wish you and your mother the absolute best in finding solutions to help her live her best life with memory loss. Thank you for being a part of this community.
Happy New Year!
Ray