Destigmatizing Dementia

I work with individuals with dementia every day so I am familiar with many facets of the diagnosis, but for those who are new to it, the manifestations of the disease can be confusing and, for some, even off-putting. 

If you aren’t familiar with the many and varied behavioral changes that can occur with dementia, you might misunderstand, misconstrue, or associate negative feelings or stereotypes with the person experiencing the symptoms.

‍These negative feelings can lead to stigmatizing the individual with memory challenges.

As a society, we don’t want stigma or stereotypes against anyone. 

So how do we address this issue when it comes to interacting with - and caring for - individuals with dementia? Some of the best ways to counteract this negative bias are to increase public awareness through education and to promote inclusivity.

Let’s help combat the stigma that is often associated with a dementia diagnosis by:

• Learning the facts: educate yourself, your family, your friends about what the disease is and what it is not. Look at the facts.

• Not generalizing: there are two sayings in the “dementia universe” that we repeat almost daily. The first is, “If you have met one person with dementia, you have met one person with dementia.” No two people are alike. The other saying is, “One size fits ONE.” Again, every single person is different in their reactions to things, their ups and their downs.

• Watching our words: choose your words wisely when speaking to - or about - the individual with memory challenges so as not to be “labeling.” Know that the individual’s ability to comprehend a situation may be greater than you think. Tone is very important too.

• Not isolating: if a friend of yours was recently diagnosed, don’t let your social circle go astray as a result. Be inclusive. The last thing the person with dementia needs is to feel alone, adrift, or without familiar faces. Continue the routines you always did as friends or family. This is important both for the individual with memory challenges as well as their spousal caregivers. I have had many a client tell me that since their spouse was diagnosed, they are no longer invited places; a very sad display of “friendship.”

• Knowing that the “person” remains: I am someone who believes that regardless of the diagnosis, the “person” always remains. What I mean by that is that an individual with dementia may communicate differently now, may use fewer words, or not know what a toothbrush is for, but underneath it all, “they’re still there.” I believe this not only because it’s what my intuition tells me, but also because I have witnessed examples of this time and time - and time again.

In the end, we can help destigmatize those with dementia by learning more about the disease and more about them as a person. We can encourage stores, restaurants, and banks to include dementia awareness as part of their mandatory training for employees. We can volunteer at an adult day center or a community service organization that helps older adults.

Knowledge, awareness, and exposure are the keys; let’s use them.