Overcoming the Stigma Around Alzheimer’s Disease

Overcoming Stigma

There are many stereotypes about Alzheimer’s and other types of dementia.  These misconceptions can intimidate those close to the person with the condition and they may dismiss the symptoms of dementia as a normal part of aging.  Negative language is always associated with dementia-related illness and it demeans the patient who has it.  Labels are not helpful nor fair to the person because no one sees the person beyond the illness.

How Does the Label of Alzheimer’s affect the Patient?

• The emotional impact of the stigma associated with dementia is significant. Social encounters may be potentially negative due to the symptoms of Alzheimer’s; this leads to anger and hurt feelings as well as embarrassment and shame.  Friends and family tend to stop visiting.  Guilt is felt by caretakers, because it is difficult for them to meet societal expectations in caring for the loved one with Alzheimer’s.
• People with Alzheimer’s tend to be treated inhumanely in society. The fact that they are often times forced into social isolation, they lose touch with friends and cannot socialize freely.  Caretakers also experience the same thing as they cannot feel free to leave the loved one for long.
• Many caretakers feel they have to be vigilant in protecting the one with dementia. They are careful who to share the diagnosis with and attempt to keep the patient from gazes for others.  They strive to keep the person with Alzheimer’s from stigmatizing experiences.
• Elderly people are already stigmatized in a sense and have dementia only makes it worse. It results in a double whammy of stigma.

Negative reactions from anyone close to the Alzheimer’s patient can impact that person’s well-being.  Stigma hurts the people with the disease and the people closest to them.  It discourages family members from confiding in others outside their circle and getting the support they need.

Is There a Way to Make a Difference?

• Educate yourself. The only way people are going to change their attitudes is when you share your knowledge. Talking about dementia frequently will help to lessen people’s fears and increase understanding.
• Don’t believe that the diagnosis is “one-fits-all." Even though dementia is a disease that is progressive, every person is affected differently.  The diagnosis doesn’t mean a person has to quit working or give up their daily routine right away.
• Be careful of what you say. Comments like “I think he’s a card short of a deck of cards" or other derogatory statements should not be made. Jokes and other words related to dementia are cruel so don’t say them.
• Be respectful. There will be a time when a person with dementia loses the ability to do the things we take for granted.  No matter how advanced the disease is, treat the person with dignity and respect.  Don’t try to avoid them at family gatherings or talk around him/her.
• Still be their friend. People with dementia are still social people. They enjoy doing activities with their family and friends.  Be a supportive friend or family member.  Studies have shown that social activity helps slow the progression of dementia, so visit as much as you can!
• Be an advocate! Don’t let the media perpetuate the myths about Alzheimer’s or dementia. Call your local radio or television station; utilize social media to send your message.