Overcoming the Dementia Stigma: It Starts With One Person’s Words and Actions
By Joan C. DiPaola

Dementia carries a negative stigma in our society. It has, unfortunately, led many individuals to avoid seeking an appropriate diagnosis, proper care or even the right pharmaceutical interventions and treatments. This stigma not only impacts those living with dementia, but also affects their loved ones’ ability to seek the necessary care and support.

One of the most detrimental aspects of the dementia stigma is the idea that those with this condition are no longer capable of living fulfilling lives. Labels like “the dreaded disease” only serve to reinforce this misconception. Rather than using negative descriptive words that focus on deficits and weaknesses, we should emphasize a person’s strengths and abilities at each stage of dementia. By focusing on the abilities that remain rather than those that are lost, we can empower people with dementia and increase their self-esteem. All it takes is one person to begin this change.

Here are a few ways caregivers can model a positive care approach, inspire their loved ones to do the same and create a ripple effect in dismantling the dementia stigma.

Words matter

A positive care approach begins with language. Many caregivers and families might not realize the weight of their word choices. Take “diapers” and “bibs” for example. While these products are often necessary for those in the progressive stages of dementia, these terms carry a negative connotation and can be infantilizing. Simple word changes such as “protective undergarments” or “clothing protectors” can enhance communication and minimize negative outcomes. Above all, these word changes signify respect and dignity — which everyone deserves.

When an individual caregiver commits to using more positive language about dementia both inside and outside of a care setting, it can influence how the caregiver’s family and their loved ones speak about the condition, too. As more people become exposed to positive care language, they will adopt it in their own dialogues surrounding dementia.

Nonverbal communication speaks volumes

As with verbal language, caregivers should commit to employing positive nonverbal communication with people with dementia. Understanding and recognizing the importance of nonverbal communication, such as facial expressions and hand gestures, is another critical factor in treating those impacted by dementia with dignity.

First, it is important to maintain eye contact and adjust body language as needed, as active listening can greatly improve communication. Avoid leaning in when communicating because this can be misunderstood as being confrontational. Familiar objects can also aid in communication by helping to resurface old memories.

The inability to verbalize wants and needs can easily lead to frustration. Keep in mind that behaviors exhibited by someone with dementia are often a means of expressing unmet needs such as hunger, thirst, the need to use a restroom, a desire to sleep or the need for comfort and pain management.

If caregivers can model positive nonverbal communication, families, friends and loved ones will follow suit — and the people in their lives will do the same.

See people for who they are, not the condition they have

The focus of a dementia care plan should be on the person, not the condition. When caregivers place the person before their dementia in their approach to care, they are showing that they see the person as the unique individual they are. This patient-centered focus also conveys that the caregiver respects the person’s autonomy, which fosters a sense of control over their own lives.

Providing choices at each stage of an individual’s dementia progression and engaging them in activities that are relevant and meaningful to their life, are integral components of person-centered care. Understanding the life an individual with dementia led prior to their diagnosis allows for a more personalized approach to their care and can ultimately help care providers preserve long-term memories as the individual’s short-term memory begins to fade. Referencing their past and using it as a tool in their care will help gain their trust and build a connection that will allow caregivers to deliver the best care possible. This approach also places value on who they are, not the condition they have.

Breaking the stigma isn’t just about changing how the world views dementia. It also affects how those impacted by the condition view themselves. When caregivers see people with dementia as unique individuals not defined by their condition, people with dementia can feel more comfortable about seeking the help they need.

Patience helps confidence

When interacting with a person with dementia, it is important for caregivers to be active listeners. Being open and patient helps build trust and restore their confidence. Avoid saying “Do you remember?” “Remember when?” “I told you that 10 minutes ago,” or, “Stop asking for your mother, she passed away years ago!” as these remarks can cause serious distress and feel patronizing to someone with dementia. Caregivers should always communicate clearly and apologize authentically. For example, saying, “I am sorry I made you angry,” will validate the person’s feelings and help improve the relationship.

There has been some controversy surrounding the “therapeutic fib,” otherwise known as bending the truth to fit the reality of a person with dementia. However, this technique can help prevent confrontation and increased agitation, sparing unnecessary stress and duress.

Remember: Simple is best. Use simple words, include the person with dementia in conversations and treat them as an equal. Caregivers often fall into a pattern of treating a person with dementia like a child, which can have damaging effects. When they are heard with openness, warmth and empathy, people with dementia can feel a greater sense of confidence. This restored confidence has the potential to influence a patient’s other relationships and help shift those people’s perceptions of dementia, too.

Be the change

Overcoming the stigma associated with dementia requires caregivers, their families and loved ones to make a concerted effort to change the way they think, speak and act toward those with the condition. By following a positive care approach, caregivers can significantly improve their communication with those affected by dementia. Those individuals, in turn, can feel closer to their loved ones and regain their sense of independence and confidence.

Leading by example can create change positively influence how society views dementia. Together, caregivers adopting an affirmative, patient-centric approach to care can help the world treat people with dementia in a kinder, more humanizing way — so everyone can receive the dignity they deserve.

About the Author:

Joan C. DiPaola is a licensed Registered Nurse with over 40 years of experience and active professional engagement. She is also a Certified Dementia Care Specialist and serves as a Senior Director of Dementia Education for CareOne where she developed the Dementia Education Program for CareOne’s Harmony Villages. Additional credentials include being certified as an Independent Trainer for Dementia Education by Teepa Snow’s Positive Approach to Care and certified as a Dementia Education and in Behavior Management by the Crisis Prevention Institute. Joan is driven by her passion to help those affected by dementia and to change the stigma associated with it.


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