Ending the Stigma of Alzheimer’s Disease and Other Forms of Dementia

The prospect of a dementia diagnosis is terrifying to almost everyone. According to the Centers for Disease Control and Prevention, twice as many Americans fear losing their mental capabilities than fear losing their physical abilities. When Marist College asked 1,200 Americans what they feared most, the college found people fear Alzheimer’s disease more than any other illness. Fear can be paralyzing, and when combined with ignorance, the stage is set for powerful stigmas to emerge. Perhaps no stigma is more pronounced than that of dementia.

The Stigma of Dementia

Wishing to avoid negative perceptions of family, friends and even strangers, approximately 25 percent of dementia patients will hide their diagnosis. As many as 75 percent of dementia patients report feeling that others perceive them negatively because of their condition, while nearly two-thirds of those caring for an individual with dementia report negative feelings directed at them or their loved one as a result of the condition.

Writing in The Social Psychology of Stigma, Charles Stangor and Christian Crandall posit that stigmas form from “a tangible or symbolic threat.” With so many fearing a life with dementia or Alzheimer’s disease, it is easy to understand why the disease has become stigmatized.

Common Misperceptions About Dementia

Perhaps the most widely held misconception about dementia is that people perceive one loses the ability to function and enjoy activities. As the Johns Hopkins University Press notes in a post on dementia myths, many dementia patients continue to lead active lives. With the right support network and knowledge, it is possible for those living with dementia to have fulfilling relationships, enjoy their hobbies and remain engaged in their community.

Another common myth that frightens people is the perception that those with dementia are violent and aggressive. The Mayo Clinic writes that Alzheimer’s disease affects people differently and not all will become violent, agitated or aggressive as a result of Alzheimer’s or dementia. Often, a dementia patient acting aggressively is the result of confusion or fear as a result of changes in their surroundings. As Alzheimer’s or dementia progress, an individual’s ability to process the world around them declines. This can lead to frustration. Compounding this frustration is that, often, the patient’s ability to communicate is diminished, so their behavior becomes a means of communication. Caregivers and family members who understand how these factors can lead to negative behavior can employ communication tactics to prevent most negative behavior associated with dementia.

Why We Must Overcome the Stigma of Dementia

Fear not only drives the stigma of dementia, but fear can also motivate people to avoid a diagnosis. “Ignorance is bliss” and the desire to avoid the negative perceptions of others tend to be among the top reasons people don’t seek medical treatment when indications of dementia present. Not seeking medical advice when dementia or Alzheimer’s is suspected can lead to missing out on an early diagnosis and treatment options that can slow the progression of dementia or Alzheimer’s.

Numerous studies also suggest support systems are essential to maintaining quality of life. Support networks can be instrumental in warding off isolation, which carries its own set of very real medical consequences. Socialization can reduce stress, contribute to self-esteem and improve relaxation. Studies have also demonstrated that socialization can help an individual living with dementia independently carry on with the activities of daily living longer than if the individual didn’t socialize. Finally, when Alzheimer’s disease has robbed the person of their independence, a strong support system will be crucial in helping the person stay safe, find appropriate housing and ensure they get the care they need during the final stages of the disease.

Ending the Stigma of Dementia

We can all play a role in ending the stigma associated with dementia. First, we must spread the facts about dementia and educate others when we hear them repeating myths about the condition. For those caring for an individual with dementia, it is important for them to share their experiences with others and learn from those who have provided care in the past. Finally, it is important to remember that individuals with dementia are more than just the symptoms of their disease. While dementia changes the support an individual needs, and how they interact with the world around them, it does not change who they are.

Above all else, it is important to remember it takes time and information to change perceptions and remove the stigma associated with dementia. In a moving article about her experience as a dementia caregiver for her father, Carol Bursak reminds her readers that most people likely wish they could help the individual or their caregiver—they just don’t know how to help. It is up to us to show others how they can help and that those who have dementia shouldn’t be defined by their disease.