People with Dementia Discuss the Stigma They Experience

The Stigma of Dementia. Hemant Mehta IndiaPicture/ Getty Images

What Is Stigma?

Stigma is a negative stereotype associated with a certain condition, such as dementia. Stigma can affect others' attitudes, perceptions, behaviors and interactions with others.

Sometimes, stigma is simply based on ignorance, while other times, more deliberate prejudice and discrimination contribute to the problem as well.

Stigma in Dementia

Historically, awareness of stigma in dementia has been quite limited.

As a society, we're often not in tune with those whom we're stereotyping and marginalizing. However, our knowledge about people who are living with dementia has grown, thanks in part to individuals who have been willing to share their experiences and others who have been willing to listen.

Multiple organizations and individuals have compiled information on the stigma of Alzheimer's disease and other kinds of dementia. These statements below are representative of a few of the many stories that people with dementia and their family members have shared with the hope of opening our eyes to our preconceived ideas and stereotypes.

1) When they hear I was diagnosed with Alzheimer's, everybody thinks I'm just going to die.

2) I don't even tell people that I have Alzheimer's because I get such terrible looks, full of fear and pity, and I'm treated differently.

3) People who I consider to be my friends avoid me now.

There's not even an awkward silence- they just aren't there any more. I'm sure they are worried and don't know what to say, but saying nothing is hurtful.

4) If I disclose that I have dementia, my thoughts and opinions are automatically dismissed.

5) I don't tell others because I'm afraid of their reaction.

I can fake it for a while right now because I don't look sick.

6) I went through cancer before and others asked how I was doing. With dementia, it's as if it was a disgraceful secret. No one asks, but many assume.

7) Because I have this diagnosis, they think I've completely lost all of my intelligence overnight. They ignore me and ask questions about me to those who are with me.

8) Others seem to think that having dementia is a result of a personal shortcoming, as if I could have avoided it.

9) We're not treated like normal people anymore.

10) We're labeled as "patients." We have dementia- that's not who we are.

11) I'm looked at as if I'm just crazy or mentally ill.

12) Friends of my parents say they "can't stand to see her like this" so they stay away. They seem to think it's catching.

Some people experience much shame and embarrassment about dementia, both as a result from people's internal reactions and opinions of their diagnoses and from the way other people react to dementia.

Stigma by Association

Family members and caregivers also report challenges related to dementia.

A couple of their comments below help give us insight as to their feelings.

1) Because my mother can't control her emotions or wears clothing that's not always appropriate to the weather, I feel that others classify me as neglectful to her.

2) Friends of our family don't come around much anymore, either. We've begun to feel the isolation of dementia, even though it's my father who has the disease.

Next Steps

A statement from the World Alzheimer Report sums it up well: "People with dementia are neither fully competent nor incompetent. Stigma ignores competence and causes harm by delaying diagnosis and ignoring people’s capacity for pleasure and adaptation" (Myrra Vernooij-Dassen as quoted in Alzheimer's Disease International: World Alzheimer Report 2012.)

Education is often one of the most helpful steps in reducing stigma. You can help by sharing people's stories (with their permission, of course) and being willing to gently remind others that although dementia is a challenging condition, it is not the person's identity. You can also use your voice to advocate for people with dementia- for their dignity, for their rights, for respect and for their quality of life.

Suggested for You

Sources:

Alzheimer's Disease International: World Alzheimer Report 2012. http://www.alz.org/documents_custom/world_report_2012_final.pdf

Bamford, S.M., Holley-Moore, G., & Watson, J. October 2014. A Compendium of Essays: New Perspectives and Approaches to Understanding Dementia and Stigma. http://www.ilcuk.org.uk/index.php/publications/publication_details/new_perspectives_and_approaches_to_understanding_dementia_and_stigma

Continue Reading