How to Reduce Stigma and Empower People With Dementia

It's been well-established that a diagnosis of Alzheimer's and other types of dementia carries a stigma, and this stigma can have harmful and debilitating effects for those already coping with the challenge of the disease. So, how can you help? Here are 13 ways to help reduce stigma and empower those with cognitive challenges such as dementia.

Senior man and woman laughing
Rolf Bruderer/ Getty Images

Share Your Story

If you're dealing with dementia, stop thinking of memory loss and confusion with shame, as if it's a fault you have. Are people ashamed of having a broken leg or cancer? You're still you, and sharing your diagnosis and symptoms with others can be freeing to you and educational for them.

Share Your Loved One's Life Story

If your family member with dementia significantly struggles with word-finding difficulty, help her share her experiences and her story. Put a face on the challenge of dementia. It is much harder for others to remain detached from the fight for effective treatment and a cure when they have a personal connection to someone living with dementia.

Educate Yourself

The more you know, the better equipped you'll be to share information about dementia with others. Learn the facts, what you can expect as the disease progresses, and how you can use complementary and alternative approaches to improve your overall functioning (or that of your loved one).

Don't Assume Immediate Mental Incapacity

Just because someone has a dementia diagnosis, it doesn't mean the cognitive ability switch has been flipped from "on" to "off." In the early stages of dementia, there are enough times that the person living with dementia will doubt herself. She doesn't need to add you to that list. Give her the benefit of the doubt unless doing so would be harmful to herself or others.

Develop and Maintain Relationships

Don't just write off your friend or loved one just because they have dementia. Unfortunately, many people let the uncertainty of what to say or do, stop them from doing anything, adding the loss of friendship to the other losses in dementia. Even in the middle and later stages, your visits can be a gift to both of you.

Advocate for Others

Those with power (in many cases, that's those of us without dementia) need to speak up. Whether it's reminding others that the person with dementia can still express her personality by choosing her own clothes for the day, or asking that the avid gardener is able to plant some flowers outside, advocating for others can make a difference in their quality of life.

Advocating also goes beyond the individual. It's important to use your voice to share with those in government about the challenges of dementia. For example, an initiative that began in 2015 urges communities to become dementia-friendly and is successfully raising awareness and empowering those with dementia. 

Empower by Listening

Ask the person living with dementia how they're doing, and then be prepared to listen without judgment. Don't try to fix anything right now. Maybe later, you'll have the opportunity to follow up on something she said that could be helpful, but for now, just ask a few questions and listen.

Use Cognitive Training to Compensate

One way to empower people with dementia is to provide additional cognitive exercises where they can learn and practice strategies to remain independent longer. For example, one study found that people with early-stage dementia benefited from procedural memory tasks, such as cooking classes.

Be Proactive About Putting Supports in Place

Connecting with community resources can empower people to live safely in their own homes for a longer period of time. If your family member has dementia, encourage them to seek our which resources are available for the future. Although this step may be a difficult hurdle, the appropriate supports can allow for more independence.

Encourage Participation in Simulations of Dementia

Simulations such as virtual dementia tours or a visual imagery of life with dementia can be an eye-opening (and heart and mind-opening, as well) experience. After "experiencing" what it's like to live with dementia, it's difficult for the person to gloss over the person who is living with dementia's challenges.

Participate in Memory Cafes and Support Groups

Stigma can have the effect of keeping the person indoors, safely at home so as to not become stressed or make others uncomfortable. Memory cafes and support groups provide a great opportunity to enjoy getting out of the house and connecting with others in the same situation. This, in turn, can make you more comfortable and confident in sharing your challenges with others. This is true both for the person with dementia, as well as the caregivers.

Watch the Language You and Others Use

Rather than describing someone as "demented" or "senile," emphasize the person. The Dementia Engagement and Empowerment Program recommends using "the person with dementia" or "the person living with dementia" instead.

Use Social Media to Increase Awareness

Consider sharing small pieces of information on social media from time to time. The more we all talk about it, the more attention dementia will receive from society and those in positions of influence.

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By Esther Heerema, MSW
Esther Heerema, MSW, shares practical tips gained from working with hundreds of people whose lives are touched by Alzheimer's disease and other kinds of dementia.