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Health & Fitness

Senior Care Video: Speaking Against the Stigma of Alzheimer's

What was you reaction when you learned that someone you knew had Alzheimer's

Sometimes something hits you in the gut and you think, “I wish I had said that.” I had that happen while was I on a social media site and saw the video I will present at the bottom of this article.  In my business I meet many people who have been diagnosed with Alzheimer’s, but have continued to contribute to the family coffers—or have tried to continue. What happened? They told someone they had Alzheimer’s and were treated as if they had told the person they had rabies and just looking at the other person would infect them.

The word used most frequently for this type of behavior is "stigma."

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Related article: Senior Care: Why We are Afraid of Alzheimer's

Find out what's happening in Sonoma Valleywith free, real-time updates from Patch.

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What does stigma mean?

Stigma is defined by Jill Sadowsky in her blog, Jill’s Experiences with Mental Health and Alzheimer’s, as

Stigma is defined as a sign of disgrace or discredit which sets a person apart from others. The stigma of mental illness remains a powerful negative attribute in all social relationships.

Stigma is a marker for adverse experiences, among them, a sense of shame, and is still perceived as a sign of weakness.

The idea of the stigma attached to an illness has occurred throughout history. Sometimes the ill person was cast out of the family group and had to live with others similarly afflicted. For example, leprosy can be held up as an example of a disease which holds the ultimate social stigma society can offer.  The condition is terrible, and even in the absence of actually encountering someone with leprosy, we’re all conditioned that those afflicted are outcasts and should be avoided at all cost. Other times the entire family would be left alone or behind. With Alzheimer’s friendships are tested and friends may choose to stay away. Family members going through mourning for what is to come, often don’t deal well with the person who is also mourning. Relationships become strained or broken.

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Related article: Senior Care: Karen's Credo

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One woman's experience

Here is the story of Kathy Murray from an article she wrote, To Fight Stigma, I Speak Up in the Alz.org | blog.

I was diagnosed with younger-onset Alzheimer’s disease in 2009 at the age of 56. Prior to my diagnosis, I was the senior vice president of operations for M&T Bank, overseeing hundreds of employees across the Maryland and Delaware regions.

I still run into those people — former employees or co-workers — at the grocery store or out at restaurants. I remember faces, but not always their names. Often, I notice that people make eye contact with me and then turn around the corner rather than say hello. Maybe they are just uncomfortable. Maybe they don’t know what to say.

There are times when my husband, Robert, and I are out and friends will ask him, “How is Kathy doing?” He will say to the person “Let’s go talk with her.” Most individuals don’t know what to say and it may be easier for them to avoid me.

Just the facts

The Alzheimer’s Disease International made a report at the end of 2012 with some of the negative attitudes about Alzheimer’s and the effects of the stigma on families as well. Some of the findings were:

·         24 percent of people with dementia try to conceal their diagnosis.
40 percent of people with dementia reported being excluded from everyday life.

·         Nearly 60 percent said that friends and family members began to avoid them and lost contact with them after the diagnosis.

·         Caregivers, too, feel the effect of the stigma:

·         24 percent believe there are negative associations about being an Alzheimer’s caregiver.

·         28 percent felt people were avoiding them or treating them differently.

·         People with Alzheimer’s and their caregivers also reported they had stopped forming close relationships with others because it was too difficult.

The report said that people with dementia and their caregivers felt marginalized by society, their friends and even their family members. The Alzheimer’s Association released some suggestions for those trying to cope with the stigma. These tips were created by people like Kathy who had Alzheimer’s and served as members of the Alzheimer’s Association National Early-Stage Advisory Group.

·         Be open and direct. Engage others in discussions about Alzheimer’s disease and the need for prevention, better treatment and an eventual cure.

·         Communicate the facts. Sharing accurate information is key to dispelling misconceptions about the disease. Whether a pamphlet or link to online content, offer information to help people better understand Alzheimer’s disease.

·         Seek support and stay connected. It is important to remain engaged in meaningful relationships and activities. Whether family, friends or a support group, a network is critical.

·         Don’t be discouraged. Myths about the disease are not a reflection on you. See this as an education opportunity.

·         Be a part of the solution. Advocate for yourself and millions of others by speaking out and raising awareness.

Here are some people like Kathy who have more to say on this stigma. When you finish watching this short video, make up your mind to be a part of the solution.

For more great information, please come visit the blog at our Sequoia Senior Solutions website.

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